Describing Simple Partial (now called Focal Aware) Seizures can be difficult. Hear about some such as Deja Vu, sudden unexplained fear, anxiety, and more.
With my focal seizures the deja vu becomes so intense that it feels like false memories, so the deja vu starts and then lots of things come flooding back to me and it just goes on with more and more memories coming up. Afterwards I can’t remember what those memories were but I know they weren’t real. It’s like a different reality, someone else’s memories? But it’s so terrifying and crazy intense. It’s like I’ve just been told the biggest secret in the world and it’s all on me... the most intense fear & I could imagine with loads of anxiety. I’m diagnosed with the seizures but never see anyone saying the deja vu becomes ‘false memories’ so I just want to know if anyone has this too
Lois Wilson that’s rough. For me, it gets so intense that it’s really scary for me. Almost “too real” that this has happened before. I would say for me it doesn’t bring up memories that I think were not true, but rather brings up an intense feeling that this moment has happened before. Other similar focal aware seizures include memories and it’s possible to have one right after another. It may be that it’s multiple seizures in a row. I’ve found that most people have a somewhat unique version of these types of seizures.
Lois Wilson I used to have a feeling I was going to “make the worst mistake of my life”, I think similar to what another person called “ a feeling of impending doom”. That may be similar to you “ feeling like the secret is all on you, I don’t know. But severe, intense anxiety with a severe horrible “ending” or “responsibility” is kind of what I feel.
Omg yes! My feelings are exactly like this. And when I mentioned it as a youth, my parents would say they used to get Deja Vu too. But it is so intense that I was always thinking, how can you talk about it so calmly if what I’m feeling during these is what you’ve experienced too?!
I definitely have the same thing. I have had so many where I know for a fact aren't real and it feels like a "past life" it feels like I for sure have been there but I definitely haven't been. A surge of adrenaline hits me and I want to throw up and I get so scared. I have a hard time finding false memories as well from other peoples experiences, but I can tell you I have been through that. At my worst I could look at a random house and picture the inside lay out and feel like I've lived in there. I felt like I was out of my mind. But I was put on lacosamide and it's helped. I only have tonic clonic seizures now when I drink too much. But the medication has taken away almost all of my partial seizures. I have a hard time dealing with the partial seizures when I have it especially when I can't find someone who deals woth the same thing. So if you ever need, we can connect and talk about it. I know how bad it gets. At my worst I felt like I'd rather die than deal with it multiple times a day. Hang in there
I’ve had these focal seizures since childhood, my parents coming up with the term Deja Vu for me when I tried to explain to them after they started. They were 90% of the time in my bathroom. Now in my own home, they are still almost always in the bathroom. Last November I was about to leave the upstairs bathroom, had that feeling. Then woke up in my bed 3 hours later with a bruise and no memory of getting to my bed. Someone told me after they heard one loud thud from upstairs. Last week, I had that feeling in the downstairs bathroom. Was about to pee and wait for the feeing to pass, woke up a while later on the floor with my roommate and paramedics staring down at me. The rest of the weeks memories are hazy. But my roommate said they heard a thud, asked if everything was okay, heard more thuds, then broke into the bathroom and saw me on the floor foaming at the mouth, twitching, face blue, jaw locked tight. Stayed in the hospital one day and they said those have been seizures my whole life and my brain is learning how to do them better now? So I went from just the partial focal to it spreading to a tonic clonic. Not sure what kind it was last November since it started as a simple partial but no one was around to witness anything. I lost memories from both times though. It’s very frightening.
I started having deja vu seizures a few months ago off and on. Describing it to people made me sound like a lunatic. Glad I stumbled upon your vid and realized that I'm actually not losing my mind.
Mr. Awesome Cat Fuzzypants So glad you found my video. I realized, there is nothing in the world like a seizure, so when I use words that have a meaning to someone normally to describe a seizure (which is all I can do for someone who has never had one) it sounds crazy, because it’s not really explaining it. Talking to another person with Epilepsy, you can describe it, and with those words, you understand the different meaning they have in regard to a seizure. I want to make a seizure “dictionary” and tell people about the fact people who’ve never had a seizure, including doctors specifically, will take what you tell them in the context of how they have experienced it, which is not the same. I didn’t tell anyone for 14 years because I thought it sounded crazy to describe them. But I knew I wasn’t crazy. That was a hard situation. Sad that we had to go through it. Hope to help change that someday😁
Losing my mind was my over whelming fear when I had started having FAS, it was in the back of my thoughts all the time "When will I just randomly snap and never come back?" I told a therapist what was happening and my fear and he looked at me with pity for the anxiety and fear I had experienced, because he knew the answer. he said "Dane, if you are not "Crazy" by the time you are 25, you will never be that person you fear. real mental disorders happen before you finish young adulthood. Are you "Crazy" now at 40? (no) Then you will not be that person in your fears" This simple, in-fact very simple, piece of knowledge, has changed my life. I now see my FAS as singular short episodes that are just a descriptor of who I am, like I have green eyes, brown hair, FAS sometimes, I am tall, etc.. It is not changing my personality or who I will be.
Yes! First it's the intense deja vu followed by a feeling being in a dream, and then finally nausea. It would take me a good hour or two to get over the experience.
This just summed up symptoms ive had for years. I had no idea they were seizures. it all makes sense now. im waiting for a neuro referral. i experience the deja vu that is extremely real, feeling like my car or other cars around me are moving when theyre not, sensory issues, hearing music thats not there, ringing and muffling in ears, and so much more. thank you for sharing this! god bless
Cindy Jackson so glad it helped. I hope you get the help you need. I always say that even if they’re not seizures, your experience is real. I’m hoping for the best!
Partial seizures are just strange. There really are no words to describe the experience. No words to describe how or why a sudden feeling of impending doom or a strange smell appears. Why I feel a feeling of numbness like you'd get if you slept on your arm, but on my whole left side? My left eye starts to blink uncontrollably and I start to create so much more saliva, sometimes to the point where I'm drooling. If I don't drool, it feel like I'm drinking a cup of my own spit. I can't understand a word you're saying even though I can hear you just fine but I'm hearing senses overpowering random music in my head. These changes in consciousness can really only be comprehended by those who've had them. Like feeling conscious and unconscious at the same time.... Great video, came out on my birthday XD
I am newly diagnosed but have been having seizures my entire life. It was only from my dogged self advocacy I was able to get my diagnosis. If it weren't for my ability to describe the seizures, I wouldn't have been diagnosed. My doctor was able to follow up with a 72 hour eeg to confirm, and we were lucky enough to log an event. Description is so important! Thanks for sharing 😁
I can feel it coming in my head, like a pressure feeling , so I relax, and prepare myself to loose control over my body, I lie or sit down otherwise am going to fall, it feels as if am drawing back into my self, i feel like am in the Center of my head while it becomes dark around me. It takes all my energy away while its happening. I feel panicky and scared. I can feel it in my head at first it’s like a some sort of pressure coming down and consuming me. My brain starts to shut of and I am very sleepy . I get very sleepy and tired when it’s happening. My head falls down to side when am laying down or forward if am sitting up straight, and my eyes close I start saying prayers in my head because I get anxious. I can hear things happening around me so am conscious but at the same time I am detached. I can’t talk while it’s happening nor can I respond to anyone or move my body, my body feels limp and weak.. i get a rising feeling in my stomach like when you are in a roller coaster and it’s going down fast, also i get this feeling of nauseousness in my stomach. I start to swallow a lot during it and for abit more after it. It last for about minute and a half max or 15 secs minimum, then I come back again slowly to myself. I feel weak and tired after it. I feel fine 10 minutes later When it’s for 15 sec or so less symptoms present themselves and when it longer like a min or so then all the symptoms show. Or Annabelle Lande what is witnessed exactly if you you don’t mind sharing hun x This is what I experience below I get a warning that it’s going to happen, the warning feels like am going to blackout. some sort of sensation comes down from my brain and consumes my head and body. It’s very hard to explain I get a feeling of extreme dread and fear. I have started to relax now, and prepare myself to loose control over my body, so I lie or sit down, when it is happening. (My last one I didn’t have a warning ) The next stage feels as if am drawing back into myself as if am fainting, while my eyes become dark so I close them. Am still aware of what’s happening, I dont loose consciousness. This experience takes all my energy away. My brain starts to shut of and I get very sleepy and beyond exhausted while it’s happening and afterwards aswell. My head falls down to side. I tell my self to be calm and that it will be over soon (in my head) I feel very anxious and fearful during it, a feeling like am about to die. I get a feeling like when your stomach drop when you are on a really fast rollercoaster going downward. It’s aaccompanied with a feeling of nausea. I start to swallow rapidly during the episode and also a while after it has finished. I can’t talk while it’s happening nor can I respond to anyone or move my body, and I don’t have the ability to snap out of it my body feels limp and weak I can’t lift my arms or legs and I can only stare blankly. I don’t have control over my body so I have to let it run its cause. As am going more and more into this state, any noises, eg tv, any small talk, cars, radio or whatever else quietens down and for split second I dont hear anything at all but before long they start to pick up the volume again as am coming back to myself. It lasts for about minute max and 30 secs min I am aware of everything happening from start to finish I come back again slowly to my normal self. I feel weak, sleepy and tired after it.
I have epilepsy but in my specific case, I only ever get them in my sleep. My nocturnal seizures are really intense and they usually involve a full-day hospital visit with several hours of recovery. In the hours after my significant seizure events, I've apparently done things where I seemed fully aware of what I was doing, but I personally have absolutely no recollection of experiencing. Focal aware seizures happen to me really frequently. At this point in my life, it's almost once a day or every other day. Earlier today I had one while making myself some coffee. I always feel as if my life at that very moment is going through something incredibly life-changing, and that the only thing that I could do is try to remind myself that I am alive, and that I am experiencing something important. The sudden stomach-turn, the freeze, the hyperfocus on loss-of-focus. I never actually knew what focal aware seizures were called up until now. People have always told me "oh you're probably just zoning out haha that happens to me sometimes" but they do NOT understand how deep this sensation digs into the entire expanse of your psyche. You explain the general sensation of it extremely well, and I actually finally feel like I've really been seen.
I’m so glad it helped to hear my stories. That sounds horrible. I had 90% of my tonic clonic seizures in my sleep. Many, many focal seizures in my sleep and daytime. I’ve been on meds for 20 years, tried 12 meds, and also now take bio identical hormones and have a continuous glucose monitor and no seizures of any type for a year. First time since I was 12 years old! I hope things get better for you. My life is so much better and my QOL is much better. Seizures can devastate life.
It’s the hardest feeling to describe, I had one about a month ago and it’s made me very paranoid. My seizures have been under control for 5 years and the last time I had this feeling was my freshman year of high-school, I’m now a freshman in college. Now I’m really conscious about my meds and when I take them. My brain has been in a fog since it’s happened and I’m at that age where I should be independent, getting a job, expanding my social circle etc. but I know that driving with me behind the wheel would be a danger to myself and more importantly others. Thank you for this video, I originally chalked it down to just a panic attack but the more thought I put into it I realized it was a focal seizure. I’m at a loss at what I should do.
miseryschewtoy wow, I am so grateful I could help. I know this whole process of learning and having seizures has been such a hard thing for me. I wish you the best. Know that there is support 😀
Thank you soooo much! My twin boys have both been diagnosed with Temporal Lobe Epilepsy over the past year. They are in the thick of this confusion and it's incredible to have you describe what they are trying to understand themselves. Thank you!
Courtney Williams I’m so glad you find this helpful. I always felt so alone and it’s good to know for me also that there are people out there who understand
I suffer with this exact same thing and it’s so comforting in a way to know I’m not the only one. I’ve had neurological tests and the doctors have failed to diagnose me. They have always put it down to anxiety. I’ve recently been battling with these seizures a lot lately and my doctor has agreed to refer me to another neurologist for further tests. So fingers crossed I can get something to help. It literally takes me days to recover from one single ‘episode’ and it seems to take me longer and longer each time I have them. Thank you for making this video!
Thank you for being brave and making this channel. I recently had to go the the ER because I thought I was having a stoke. It is the 3rd time it has happened to me. I was lucky and had a neurologist recognize that it was a focal seizure because it was the right side of my face affecting my word finding speach and vision. My consult with a epileptologist isnt until Aug 3rd. After watching you videos, I have had SEVERAL of your experiences so many times I lost count and now Iam rethinking my entire life. Thank you, Thank you, Thank you, you are helping me so much until I get into the specialist. Julie
I had deja Vu and it was communicated to me what happened or will happen will turn out 100% peaceful and loving. It felt like I went thru the imagery billions of years ago. I had the most fear I ever felt and my pineal gland felt like it was gonna burst. I knew it was Jesus Who ended it as promised and I kept asking Him if He would let if return. I was reassured of the mental imagery of white curtains securing that head feeling
I saw a useless neurologist that did a 3 day EEG and a MRI. He never called me with results. 6 months later I called him. His nurse said everything is normal I just had a mild change on my white whatever. I have no idea. I think is my memory. I have this deja vu feelings at night, while driving and it’s like I entered a dream. My stomach drops and the more I move the worse it gets. I cannot swallow my food and if I’m driving I can’t turn. When I had the EEG, I didn’t have one. My cousin saw me having a few and she asked my mom why I gagged. It was my stomach dropping. My brother is epileptic and he was on tegretol all his childhood. So my mom thought what I have was nothing.
Wow, that sounds really scary. Usually they’re talking about white matter, which is part of your brain matter. having any kind of a change or lesion in your brain can cause seizures. I would definitely see if you can get your hands on the records, even if you never do anything with them, because they can be useful at some point in your life, those tests take a lot of work. I have had multiple MRIs and video EEG, and I should get the records for myself as well. it sounds very concerning that you’re having this sometimes when you drive, I actually kind of recognize the stomach drop feeling but I haven’t had a gagging happen. I also did not have any seizures while I was having the EEG, a lot of doctors will say that if you have no seizure activity on an EEG that you don’t have epilepsy, however, that is not true unless you were actively having a seizure, it may not show up. Heck, there’s a lot to debate about everything when it comes to the brain and ultimately, I think you need to believe your experience and to find help your need to find someone who is willing to listen to you. I had to go to multiple neurologists and epileptologists to find someone who would take me seriously. It’s stupid and it shouldn’t have to happen, but for your safety, while driving and the rest of your life, and your quality of life, getting help might really be good. I am on three meds and for the first time in my life I’ve had no seizures of any type in a year. I am completely different life than I did years ago when my seizures were out of control completely. I wish you the best, I really hope you can get some help and stay safe. I know it sucks, but I had to stop driving for seven years. while I got my seizures somewhat managed. It can be worth it to make sure you’re alive and everyone else is safe too.
@@arielonhealth I am seeing a specialist. He specializes in seizures. He said that my seizures is deep down the brain tissue snd that’s why it doesn’t show in the EEG. He said I am lucky that it didn’t generalize d because is deep in there. What I have is Auras/ focal aware seizure. I knew I wasn’t crazy! Thank you for your reply!
Your videos have given me comfort. I have struggled or I should say avoided even thinking about my condition. It feels like a weakness or that I am losing control of my mind and that’s scary. But your videos really did help ground me again to remember that these are short temporary episodes and there’s no indication that they’re causing long-term damage or that they may increase in frequency. I had my first focal aware seizure when I was in College and then did not have another one for 25 years. I have since had only a half a dozen in the last 10 years and I’m grateful for that. Without education and learning, focal aware seizures can be mentally a really scary thing. For someone who feels like they have control over almost everything in their life to not have control over the one thing that is the most important thing in my life my brain is emotionally draining. So again thank you for your videos you are helping people that you don’t even know.
I was diagnosed with Temporal Lobe Epilepsy with Complexed Partial Seizure at age 43.(I had my first and only baby at 40 and during labor I experienced Ecclampsia and I believe there is a definite correlation). Ive been on medication and I am grateful for this medication because I dont have the seizures as often. Im now 49 I have the De Ja Vu moments that are so strong that it would just pause my life and then I would get very nervously afraid and confused. I didnt know they were seizures...smh...This video has helped me not feel so alone becuase I dont even talk about them to anyone...I guess I should tell my doctor.
I hope you found a doctor who understands these seizures and helps you. They made me very nervous and confused. It's so stressful out of the blue to have a seizure. Mine are almost completely controlled with meds now and I am so grateful.
I'm really struggling with these, I have had two tonic clonic sezuires but have had these weird de ja vu things since I was 9 , they are linked to my dreams I swear... it's like a sudden I've seen this before exactly like this and then my stomach feels sick I feel dizzy and I sweat loads and I start doubting whether life is real and it's just me creating it , even trying to write it doesn't make sense , I just can't cope with it anymore and everyone thinks I'm crazy :'(
Gabs varley wow, that’s rough. I understand when people don’t get it. I had a doctor who didn’t believe me. But, those symptoms sound a lot like partial seizures. Do you have a neurologist? Getting your TC seizures under control is very important as well. I wish I had gotten on medication sooner. Having seizures can be so scary. But if you can get the right help, it can get better. I’m having almost no seizures of any type at this point. I wish you the best.
Holy crap I get like this also, it's like I suddenly disassociate with reality and then start to freak out but it's really brief. I think nothing is real and it makes me feel like a crazy person lol
Thank you so much for making this video. About three weeks ago I was diagnosed with temporal lobe partial seizures (TLE). Four weeks ago for the first time I had a grand mal. I had crazy intense dejavu my whole life or really weird moments where I couldn’t tell if I was moving slow or fast. Two weeks before my grand mal, I finally told my boyfriend something was wrong with my brain, but I had no idea why I thought that.
At the onset, I get this intense feeling, as if I'm on an elevator, and I'm either leaving the top level to go down, or vice versa. It feels like the beginning of an elevator ride, or a bit like those 2-3 seconds over a loop on a rollercoaster. Then there's the deja-vu, of course. Auditory sense is on overload. Ringing in the ears. No strange or familiar smells, nothing olfactory. Fully conscious, but feel slightly paralyzed. Overwhelmingly anxious, scared, wanting it to be over. And they don't last long, obviously. But the weird thing is, after an episode is over, I look forward to another. That is, until it happens again, and I get scared all over again. I used to get them periodically, from the age of about 22, until I turned 44 in 2008. I mean very sporadically. Like once every 6 months for a while. Sometimes I'd go 2-3 years without one. And each time, I'd get an episode around 10 in the morning, knowing that I'd have several throughout the day, but then that would be it. Just that one day. The next day I'd be fine, and nothing again for a year or so. But in 2008, I finally found success when I Googled the deja-vu symptoms, and came across this young English lady on RUclips, describing her auras. It felt so good to finally know what I was experiencing! So I was ready for the next one. At least I knew what they were. But as soon as I found out what they were, I stopped having them. I was a bit disappointed. There were a few times that I'd feel like two seconds of the onset of an episode, and I felt that I was in control, and then it stopped. But that couldn't be it. You can't just control them. Anyway, everything was going along fine until sometime in early 2019. It was the latest in the day that I'd ever had a first episode, and they were shorter and quicker than ever before. I had about a dozen of them back-to-back. About 5-10 minutes break in between. It was a mixture of emotions. Welcoming and frightening at the same time. And nothing since then. Hopefully none ever again. But just wondering if anyone else understands what I'm talking about, when I reference the sensation of an elevator ride?
Dori Sibley I’ve heard a lot of descriptions that are similar to the “elevator ride or roller coaster drop”. People have actually used those words. Really interesting how they have come and gone for you. I hope they stop now. Wishing you the best
Wow thank you for posting this. I was just diagnosed with epilepsy at 22 when I had my first grand mal, and since then realized I have been having partial seizures for years. I was being treated for anixety and panic attacks that we djdnt realize were seizures. I have been trying to deal with the memory loss as you are too. Its very hard to not remember your life at 23.... I have the deja vu seizures as well, and I cant believe I had no clue that is what was happening. There must be so many more people that dont know what is happening to them. Thank you for sharing your story. I feel less alone
Brittany Young I’m so glad you found out what is happening! I spent 14 years not knowing I was having partial seizures because I got diagnosed with tonic clonic seizures at 12, but no one EVER said anything that would have remotely helped me realize that what I experienced were seizures. I felt crazy, and so alone and didn’t tell anyone. I don’t want other people to deal with that. I really hope things get better for you! Glad I could help a little. It took me years, but now I have no grand mal seizures and hardly any partial seizures because of meds. My quality of life is sooo much better 💜
Here is my video on memory. It helped me a lot to feel like I understand what’s going on and why I can’t remember things. ruclips.net/video/tYF0ip-wTio/видео.html
Hi guys, I'm trying to understand all of this. As my husband had a seizure for the first time, we are seeing a neurologist soon. And he might have already been living with focal aware seizures for a while now. Thank you for posting your experience!
I had my first grand mal seizure a couple weeks ago, at the mall and a whole crowd gathered around to look. That morning I had that deja vu feeling you described to the point where it was making me dry heave. I kept saying "I lived this day before." And thought something bad was going to happen. Since then I've had what I think was a partial seizure. I really hate that deja vu feeling, but I feel better knowing I'm not alone. Thanks for posting this!
You are so welcome! That is so rough! Having a tonic clonic seizure in public was devastating to me. I had my first one in my classroom in 6th grade. Another happened outside at school when I was 18. Ultimately I've learned that it doesn't matter and that people are just clueless. But it was hard to get there. I know that the deja vu feeling can be intense for me. I also tend to feel like something bad is happening. So, you are not alone. I hope you get good help and things improve. :)
Though small, the thing that makes these seizures so bad is that they are so frequent, and we have to live with them on a daily basis whereas other people don't. Some days are good days (0 or 1 seizure per day), others are bad days (up to 20 or maybe more seizures in the day). Just gotta "Plow through them": YOU SAID IT
I'm so grateful to have found your videos on this. I've been dealing with these strange deja vu feelings since about 2013/2014 and for the longest while, just chalked it up to anxiety (which I've struggled with since age three) but more and more recently, I've been noticing a significant difference between the two feelings and have started researching TLE with the suspicion that that's what's up. For me, I just get sucker punched with these insane spells of sensation out of nowhere (for some reason almost always while I'm brushing my teeth in the morning, for some reason) that start with these really intense visions of strange things I struggle to describe as if they were parts of a dream I never remember having but they feel so inexplicably familiar, along with jamais vu about the world around me, and then my body reacts with heavy breathing and a lump in my throat and I get kind of dizzy and get this sensation in the back of my throat like I'm about to gag and this tingly feeling in my lower abdomen and these chills or shivers that are nowhere near the same as the trembles I get with a typical panic attack. It only lasts for a few minutes (I had one this morning that I timed while I jotted everything I was feeling down onto a memo pad on my phone for reference, and it clocked in at four minutes long) and then am relatively fine but feel super effed up for the rest of the day kind of like I'm in this haze and sleepy. It's terrifying and I hate it, but I feel grateful to have some semblance of an understanding as to what might be up, and I recently asked my doctor about it and he said he was going to consult some specialists in the office for me to see what he could find out and I guess I'll go from there in working toward an actual diagnosis, but I'm so grateful to have found your videos talking about this because they've really helped me relate what I've been going through and provide some more insight and information on the topic so thank you so much for that. (This got really long, whoops, sorry x_x)
I'm so glad I could help. I know how awful it is to feel all alone in this. Seizures are very intense and scary to me. I really understand feeling hazy and sleepy. I usually feel like I just can't think at all after a seizure. Like my brain is not working. I hope that you can get some help with this. I know a lot of doctors will say it is just anxiety, and people themselves. But sometimes it's more than that. Either way, your experience is real and it's tough. Be well!
So strange that a lot of the time I have them when brushing my teeth too, or when getting in the shower which I’ve seen other people say about as well. Or in a certain area of my house. Maybe that’s a thing because I’ve seen other people say it!
I struggle with these, too, and have been for about 5-7 years. They have gotten worse and more regular over the last two years. They seem to come at the same time each month, always in the beginning and the middle of the month, so about every two weeks. I assumed they were hormonal but now I see men get them, too. First i get a wave in my stomach, almost like a quickness (similar to if you go down a slide or something) and then i get a little zoned out but can interact and speak fine, my motor skills are not effected. Then I get a strong whiff of something, it ranges between burning, floral and chemical, the scent varies each time, shortly after the smell comes on the deja vu sets in. For me my deja vu is a fear inducing experience. Whatever is going on in the background has happened before and it has a negative, scary association with it. Whether its a song playing in the background, a conversation I'm overhearing or even a conversation I'm having with someone. I get very scared, scoot away from any walls, desks, anything I'm around if possible and tend to move to the center of an empty space, although I'm always unsure of what I'm actually trying to move away from. After that, the whole feeling goes away as quickly as it came on, it usually comes and goes in 4 or so minutes. Throughout one 24 hour period I will have anywhere from 1-15. These happen over a usually consecutive 2-4 days. Usually the the middle day(s) are the ones where I have the most occurrences (I call them auras). For example, last time I had 1 the first day, 3 the second day, 14 the next day and then 1 the last day. Afterward an aura I am exhausted and nauseated and sometimes have to throw up. The exhaustion lasts for the cluster of days they are happening, but the nausea is only right after an episode. The other strange side effect of this is that my sense of taste is affected on the second day until the last day of auras. Everything I eat tastes very sweet. So sweet that I can't eat more than just one bite. The only thing I can drink is water, and even that has a very small hint of sweetness.
Lauren' Noel Honestly that sounds really exhausting. I actually don’t know how many I was having in a day because before I got on one epilepsy med I had no idea they were seizures.But honestly for me the intensity of the déjà vu is one of the things that seemed so strange when I would tell people that I had déjà vu and they would say they had it and it was no big deal. Now I know that they are not talking about the same thing. I used to basically leave wherever I was and go for a “walk”-meaning get the hell out of wherever I was. It was so mind blowing because I had no idea why I was feeling like it was so scary and horrible and that something bad was gonna happen. I don’t know about the taste thing, I haven’t heard that before but neurology is pretty interesting. One time I was reading patient descriptions of temporal lobe epilepsy seizures and someone said it felt like a “feeling of impending doom”and that helped me to try to describe it to someone. You said that you get them regularly and thought they were connected to your hormones, my guess is that they are. If you look I just posted a video recently about catamenial epilepsy, which is when it is connected to your hormonal cycle. It can happen with any changes which could be around your period or around ovulation or both. I found that it’s helpful for me because mine are related to premenstrual time, to be aware of when that time is coming so that I can just be ready that knowing I’ll have more seizures than usual. But I’m sorry this is such a crazy illness to have and it’s so stressful sometimes and traumatizing I really hope that you can get a handle on it sometime I am Basically having no seizures now because I have tried so many meds and have gotten it under control and my quality of life is so much better. I wish you the best
I too suffer from partial seizures. Both where I’m aware of what’s going on and seizures where I would totally black out for minutes and not remember anything that happened during that period. I’ve had my wife, family, and coworkers witness what I go through during a partial seizure. Everything from lip smacking, talking out of my ass, my eyes pupils getting huge, and my scariest ones where I would remember being in one area like a certain room for example and then snapping out of a seizure and being in a totally different room or even end up outside and having no memory of how I got there. My life has definitely spiraled down since being diagnosed with epilepsy. My driver’s license is suspended so I’m getting dropped off and picked up from work every day. 7 months later after my epilepsy diagnosis, I was diagnosed with anxiety and depression so now I have a trifecta of mental illnesses. I’ve gotten the anxiety and depression under control with meds but the seizures are a pain in ass to even decreases the amount I would go through every week. I’m currently on Lamotrigine 150mg and I’m taking those twice daily but they don’t seem to be working. It’s also a hassle finding the right neurologist that wants to help their patients and get their seizures under control instead of taking advantage of their insurance money. I hope everyone who suffers from this mental illness gets the right medical attention and gets their life back on track. Good luck!
Hi! Wow, that is a very scary history. I get that your life is going haywire. I didn't have my license for 7 years. But once I got on meds that worked, I got my license back. Wanted to mention-this is not a mental illness. Many of us have mental illness as well such as anxiety and depression. But Epilepsy is a neurological disease. It has taken many years for me to get my mental health and my seizures managed well. I tried 12 Epilepsy meds. I had to go to multiple neurologists, because some are not helpful and can be dismissive. I had one say it all was not real. I have tonic clonic seizures as well that were witnessed for 10 years, but he said I couldn't prove it because I had no video. I almost went off my meds in the Epilepsy Monitoring unit so that it would induce a seizure and be on video. But it didn't happen and I am very glad. But partial seizures can be just as scary. So, advocate for yourself. I take a lot more Lamotrigine, so there are other options. There are other meds to try. I'm so glad I kept trying. I even got a VNS. But ultimately, the 2 meds I am on are working. It's such a trial and error because everyone is so different. Take care!
Thank you for taking the time to read my story. I really appreciate all the advice you’ve mentioned and I’m looking forward to the day that I find the right medications that will stabilize my seizures and finally get my life situated. I also forgot to mention that my seizures are weird almost like they have a routine. I would get them every day for about a week straight and I would have none the following week. After that, I would just randomly get them every other day until that routine recycles again. Wow! I’m surprised it took you several years to find the right meds with the right dosage and the right doctor you felt comfortable with. I’m a very inpatient person so when it comes to these sort of situations, I want them to be over with instantly but I know I have to learn to be patient. Lamotrigine is only my second medication after taking Keppra which did absolutely nothing for me. Maybe I just need to increase the dosage but who knows. Like you said, it’s all about trial and error with these meds and I just gotta find the right one or two. Thanks for giving me some hope that one day I’ll be myself again and hopefully behind the wheel driving myself around without the worries of having a seizure on the road. Keep putting out these amazing videos and stay away from that Corona Virus.
Also, what you said about deja vu is my experience as well, I feel a very intense sense of having been in that exact moment before and it's overwhelming and disorienting, and then sometimes I start to sweat, my heart pounds, I get this insane fear that something awful is about to happen. I usually quietly push through it and breathe until it's over, and it's awful. It feels awful, and then it takes me hours to feel right again.
Deja vu was my most common focal aware seizure. It’s amazing how it can be so intense that it’s scary. That’s something that I never quite understood when I tried to talk to other people about déjà vu and they acted like it was no big deal. Obviously they were not having a seizure. After the deja vu I often got that same awful feeling, which someone described in something I read as a feeling of “impending doom”, which I think says it perfectly. It’s so bizarre how strange these are and yet how many of us can have the exact same experience or very close to it. Definitely hope someday we can get more descriptions out there of these seizures so that people can figure out their diagnosis much sooner. I was having tonic clonic seizures since I was 12, but I didn’t know that the other experiences I was having were seizures until it was 26. That being alone and the scary experiences and not being able to share it with anyone was hell. I’m so glad that you found my channel and I hope you don’t feel so alone and can find some comfort here.
This is completely what has been happening to me, mine generally starts with the deja vu and impending doom where I felt like I needed to get up and walk or run or pace the floor. I was previously describing it as like my brain felt like it was on repeat. It comes in waves of intensity, for about 5 to 8 minutes then when the waves of it start to slow down I get teeth chattering chills to the point I cannot get warm enough and my husband and family jack the heat all the way up and wrap me in blankets. Those chills make me shake all over and gradually about an hour, I fall asleep and I’m so exhausted. I’ve been a nurse for 22 years but I had no way of describing what I was experiencing. Thankful for you putting words to what has been happening to me. Tomorrow I finally see an Epilepsy specialist, praying I can get some answers to what has been going on. I even have issues with memory and finding the right word to say at times. I know I have IIH and migraines, but no stroke or aneurysms seen on my CT or MRI. Maybe an EEG will show what’s goin on.
Thank you, I've been frantically looking around because I was terrified of all this, and your video helped me realize what I have. I've done research, and now I'm going to get it checked.
Inferno 7 I’m so glad I was able to help! Figuring out what’s going on can be good and scary. Ultimately, it gives you options for treatment, which is great. I hope you get some good help. Remember your experience is real. Not all doctors and even neurologists really understand Epilepsy or get what you are describing sometimes. Get a new doc if they don’t listen. 😁
This is the first personal account I have heard and it is practically the same as my daughter. I have been trying to find out whats causing all her strange symptoms for about 18 months. Doctors have had her down as anxiety but it just didn't feel right. She hears whispering, whistling and voices and feels like being tapped and watched. Shes been so scared, shes 15yrs old. When i show her this she will be so very relieved to know shes not alone. THANK YOU
caroline taylor this is voice to text so I hope you can understand. I am so glad that you came across my channel. Reading a book that had patient descriptions of the partial seizures from Temporal Lobe Epilepsy was how I figured out that what I was experiencing was seizures. I personally have tonic clinic seizures so I’ve been diagnosed with epilepsy from 12. But when I tried to explain the things that were happening that started around that time they just sounded weird and unfortunately in my family they were spiritual abuse so they said that it was a spiritual experience and caused by negative energy. But I know how it feels to have it Doctors not believe you, not really listen or take you seriously I just stopped telling anyone about them because I knew that people were going to say I was crazy. So I didn’t say anything about them for 14 years. And that was a living hell. I am just so glad that you are there for your daughter and you are advocating for what you feel is right. I always knew it wasn’t psychiatric. But like I said my family scared me and I didn’t know what it was so I didn’t even know where to start. When I was 28 I read that book and was able to get treatment and now I have almost no simple partial seizures or grand mal seizures. The whole experience was very Trumatic. I can tell you that almost everyone who comes to my channel has been diagnosed with anxiety first. I also have a video talking about depression and Epilepsy, How horrible it is when doctors don’t believe you, and the PTSD you can get from having seizures. You can also get PTSD from being miss treated and neglected by doctors. I just say that because I do have anxiety now and yet that’s not what my seizures are. Because it’s perfectly understandable that when you’re worried these are going to happen at any time, you’re anxious. Also, if you’re scared of them and you have one it will trigger a lot of anxiety. But that’s not the original thing. I wish you the best and I am so glad that you’re helping her figure this out it will really make the rest of her life so much better. You may end up needing more doctors that are not helpful I just keep trying. Also as much as you can learn and resource doctors will take you more seriously. But their egos get in the way and they don’t like it, but I still find that knowing the info means they can’t just dismiss me completely.
Thanks for your descriptions. I have complex partial and simple focal aware seizures and I just sat, watching your video, and nodding "Yes," through the whole thing. Very good explanation of something very hard to describe. Thanks and hang in there!
Thank you for this. It helps reinforce what I suspect my son experiences. My 6yo was recently diagnosed with Occipital Lobe Focal Seizures (simple partial) but most of his symptoms tend to be what you've described and involve his temporal lobe. He's exhibited anxiety since infancy but it wasn't until he had some more obvious symptoms while sick (viral infection/covid?) that we realized he was having seizure activity. It's so obvious now the correlation between his anxiety (he goes into fight/flight/freeze very easily) and his seizure activity. I was shocked that his 48-hr home eeg showed frequent 20-30sec seizures because I was watching him closely and mostly it's hard to "see" his. As a mom I felt so guilty for not realizing earlier what was going on with him. I also had epilepsy (absence/tonic/clonic) in childhood and now have Non-epileptic Seizures (fyi, no-longer called Psychogenic).
Thanks for letting me know about the psychogenic term. I think that there’s so much going on in the brain that things like fear and anxiety can be directly connected to your seizures. That’s my experience. It may look like someone has Random anxiety, but actually it’s from seizures. I can only imagine how upsetting this must be. But know that you’re a good mom that you’re getting it figured out and trying very hard to make things better.
You have described so many of my seizures. I never heard of having an out there feeling, or being completely confused . Amazing! Several others as well I have temporal and photosensitivity and partial . Thanks for your explanations
Ariel , It's ok to take a breath ! , I know all this is really needing to be said and it's urgent . . . But - PLEASE ?!?!?!?! just try to relax a little bit . . . My main triggers are #1 Stress , #2 Lack of sleep & Above all ..... Feeling safe ( or not ) in your surroundings . . . . . Having really good friends that you can count on ( this includes ) Family that are or might not be blood related . . . You get the idea . YOU are not the disease --- YOU are SO MUCH MORE THAN THAT !!!
Seized on and off for over an hour last night. Did not lose consciousness. Felt like I was stuck in my mind watching the world happen. Deja vu. Even told my husband this jist happened. Told paramedics that too. I had forgotten my seizure med. I thought that I had died. I was repeating words and phrases but in my mind I was repeating words such as walk to bring myself to the "front" to have control. Paramedics said I was either schizophrenic or on meth....
Wow that sounds really awful. Sometimes if you are withdrawing from medication you can have even more seizures than you normally would and sometimes more intense. I’m sorry that it sounds like nobody would believe you.
i very recently began experiencing deja-vu like seizures. it’s so relieving to listen to you describe exactly what i experienced. thank you so much for sharing.
Ah you are the first person to explain what exactly what I tell people or the paramedics. I tell them my brain doesn’t feel right they just think I’m crazy
Divine Feminine Tarot I’m sorry. I always felt like I couldn’t tell people because I thought it would sound crazy because it’s so hard to explain. But you’re not crazy, and keeping that inside is also awful. I hope maybe you can get some help, so that people will take you seriously. It really is a big deal. Just remember, your experience is real, and it’s important to feel safe. Have you ever talked to a neurologist?
Yes I’ve seen a few I have a dysautonomic neuro he didn’t think I was having seizure but my therapist did. He ordered an eeg and the neurologist I have at my home town did it and said I had spiking and slowing in temporal lobe. Then I was trying to get into an new neuro guy was a jackass so now I’m waiting to see an epileptic specialist.
I think that's great that you will see an Epileptologist. I have had such jerk neurologists/epileptologists before. I'm glad you keep advocating to get to the bottom of it. I hope you can get some help. I have Dysautonamia too, but am going to see a Cardio who deals with it. Mostly POTS symptoms.
Divine Feminine Tarot I have looked into EDS. I am on the hypermobility spectrum, but can’t find a doctor who will work with it. I haven’t looked into CSF leaks. I have ME/CFS which often is comorbid with POTS. It’s difficult to have illnesses that are more rare to find good doctors. Took me the last year to get to this cardiologist. The first one I saw just said she doesn’t deal with this-when I gave her the info on the testing. But that’s ok, she had the wrong words in POTS and thought it was orthostatic hypotension, so I want someone who at least knows a little more than that.
I can't begin to.tell you how grateful I am that you have shared your experiences with us. I was diagnosed with epilepsy in 2019 but have struggled to get proper management/diagnosis until recently. Simple/complex partial seizures due to mesial Temporal sclerosis and I've still been in denial these past 3 years because I was always...confused by my symptoms and how ppl would question me on what happened like I should have the answers and I didn't. I'm still in the process of getting to understand exactly what is going on in my brain so I don't have to just call myself crazy or emotional or disconnected at times so before I ramble any longer thank you so much for making me not feel crazy anymore and get a better idea of how to move forward myself. Thank you so much 🙏
have simple focal awareness epilepsy I am on Lamotrigine. I have migraine so bad it drained me and exhausted me. . I was aware of seizures. I have Daveja, thrown up, I saw patterns. I guess I been having them all a long. I have generalized tonic-clonic epilepsy as infant and childhood. I have 3 grand mal seizures after birth and throughout childhood I would sleep for 3 days. My mother have placenta abruption I have loss oxygen and aspiration meconium my kidneys shut down. I was put on phenobarbital afterwards until 5 than tegretol. What I describe is what I feel thank you
i believe ihad seizures back in mar 2021. I could hear for a few seconds and I could talk, but most of the time I was not able to and my arms/legs were shaking and i could hear and think for a short time.
So amazing to hear someone explain exactly what happens to me- especially the Dejavu... never had the smells like mnaik said but I’ve heard about them a lot.
im 36 and have had TLE from birth (rare case of identified origin) but i am admittedly only now coming to terms with this debilitating disease. Ariel...you have helped me so, so much. Listening to another person speak what i have been living is revolutionary. No one has ever explained to me about these seizures and how very scary and real they are...even if no one else knows they are happening! Im in the process of accepting treatment again, part of that treatment will be a therapist and a support group. Thank you Ariel...you've been more help and support than 36 years of Dr.s and meds :) Laura Leigh
leafofmind I can’t thank you enough for those kind words. I created this channel for that exact reason. I felt so alone with what I was experiencing and didn’t get help with Dx with the partial seizures until 14 years after they started. And the way I figured it out was reading “The Epilepsy Patient and Family Guide” and reading other patients descriptions. I had never heard anyone explain the same thing I was going through until then. I had felt so traumatized and I couldn’t explain it. I really thought everyone would think I was crazy if I did. So glad you can get help and treatment! I see a therapist and it has really helped with dealing with the trauma of all those years. I hope things go well! Blessings!!
ariel on health Thank you :) I went ahead and ordered the book! My appointment with the neurologist is tomorrow. Im so grateful that i can go in confidently now and not in fear. I even opened up to my family about every scary epilepsy "secret" (who wants to admit they hallucinate lol) i was keeping from them and not only was there a major "Aha" moment...but they are all very supportive :) My 16 year old has been amazing! Thank you, thank you for being such an advocate....you truly have helped a lot of people...me and my family included. Very grateful :)
leafofmind wow. I am so grateful you are able to acknowledge your experience, and be able to share it. You have seriously made my day and people like you make this whole channel worthwhile. I am so glad you are getting help. I hope it goes really well. I always say, remember your experience is real, no matter what anyone says. You know you best and can trust yourself. Really, I am so glad you told me this because it makes me know my difficult experience can help others and that is exactly why I share. 😁 thank you. If you want, update me sometime. Blessings!
All I can is wow. This made me cry. I used to have these experiences as a child, and simply thought of them as Night Terrors, as mine would mainly occur at night. It’s only in the last few weeks, someone mentioned Epilepsy that I began to wonder and look into it and your video is the only one that’s ever really explained it. Thank you so much.
Chelsea Skiles I am so so glad you found this and I was able to help. I used to have 90% of my tonic clonic seizures in my sleep. The change in brain wave states is actually a pretty common time to have seizures. It is very traumatic to not know what is going on when you have a partial/focal seizure. I didn’t know for 14 years and was so scared to tell anyone because i thought it sounded so strange they would think I was crazy. Do you still have any?
Thank you so much for posting this! I struggled with seizures, undiagnosed, for almost 20 years and we seem to have a lot of the same experiences. I’d love to chat with you some more. I don’t actually know anyone with epilepsy and have never been able to share experiences with anyone who might understand. It can be so impossible to describe sometimes. I’d love to have you as a friend on Facebook! ☺️ x
I’ve been thinking about that a lot. The fact that we don’t have words or ways to really convey our experience because we have no context or anything really to compare it to when we talk to people and doctors makes the diagnosis process a big problem. I decided I think Epilepsy patients should write a “seizure dictionary”, so new patients can read it and say-“that’s what I’m trying to say!” Glad to hear the videos helped and you don’t feel so alone. I don’t usually write my contact info here but definitely look at things like “The Epilepsy Foundation”, and they have groups in some cities, lots of good info, and conferences that I found extremely empowering. Having community is very important. Blessings! 😁
So true! I never got told anything about what forms seizures come in by any doctors. I’m still learning about what this disorder means to me by doing my own research and just living my life and taking the experiences as they come. I’ve been feeling extremely mortal lately after a few nasty falls and bumps to the head and am definitely looking to connect with others who share this experience. I’ll definitely follow your suggestion but I’m also ok to put my contact info here incase you wish to have a nose. ☺️ Sarah Birch (Duggy) No pressure whatsoever and thank you for replying. You seem like a genuine and lovely person x
I’ve been thinking about what you said about a “seizure dictionary” and I think that’s an amazing idea. I’m contemplating starting a Facebook group for people to post their crazy epilepsy experiences. I’d definitely be interested in learning more about what others go through, as well as clarifying my own experiences. I’m not always sure whether what I’m feeling is epilepsy-related! 🤦♀️
I am currently waiting to see a neurologist at this time. My symptoms are varied sometimes a mild déjà vu type sensation, feeling hot and cold at the same time. A sensation of tingling all over my body. Mild dizzy feelings, feeling sick but not actually being sick. Strange taste in my mouth. These attacks can take place when I am up and about and also more common at night I can wake up with the above feelings. After an event, I have a loss of appetite and feel tired and often have a headache. I have had these feelings for about two years and just recently I have had an MRI brain scan and now waiting on the results.
Spirit76 I’m glad you are getting help for it. The MRI won’t necessarily show anything. Many people have idiopathic seizures. But, they are very real. They sometimes show on an EEG. But for me, unless I am actively having a seizure, there is no seizure activity on an EEG. I say all that because it’s important to know that your experience is valid and real even if the tests don’t show anything. Some docs are dismissive and jerks if they don’t have tests with blatant results. I hope you get the help you need! Having fewer seizures had made my life so much better! But I had to try many meds and see different docs to get the help I needed. I wish you the best.
So glad! I hope you get the proper diagnosis. I know how hard it was not to know what was going on. You are not alone. Let me know if you get some help if you want.
I've had all of this since I was about 10 and I only learned this year (I'm 37 now) that it's epilepsy and temporal lobe seizures. earlier this year I started having tc seizures at night along with burning smells that prompted me to go to the hospital where I was admitted for tests and after all these years of feeling crazy, I know what's really happening now. I'm on medication that helps but doesn't fully control my partial seizures, and I'm still trying to piece everything together. Thanks for the video, your experiences have helped me understand mine a little better. 💜
Miss Riley I’m so glad you finally figured out what was happening! Unfortunately so many people go through this where they don’t know they are having seizures for many years and feel alone and crazy. You’re not alone and I hope that you can keep trying meds because you might be able to find some that do control your seizures. I’m glad that you found my channel and it’s helpful and be in touch.
Thanks for sharing this. I’ve been diagnosed with epilepsy recently, I didn’t knew that this kind of seizures even existed and now everything makes sense. I thought it was only bad anxiety or other similar things that I had to mentally work to make them go away and get better, I tried and tried to manage this situations but anything seemed to be enough so I always ended up feeling defeated. Having this diagnosis is a relief for me, I hope that the medication that I’m about to take helps me too.
I’m glad you finally figured out what was going on. I had the same experience, where I was trying so hard to change things mentally and it absolutely didn’t work. I have tried quite a few meds, so don’t give up hope if the first one doesn’t work well. Basically the only solution is epilepsy meds, and I have to say my quality-of-life is so much better than it used to be now that I take them. Wishing you the best.
Yes! More real than real life is so true. I get these. Very intense deja vu of a dream, dream realm, parallel universe....something of this sense. Though when it's over I can't remember what I was thinking of. I remember it happening and I'm conscious of my surroundings. So frustrating when it's undiagnosed though.
I started having my simple partial seizures at 10. They are in my temporal lobe, and they are deja vu seizures. As a 10year old, I had no clue how to explain this to anyone. I would get really nauseated, then extreme deja vu (with like “video”playing over reality) and extreme anxiety. As a child I was convinced I was psychic and “fighting” it (I read A LOT). I tried to tell people something was wrong, but I was accused of being a hypochondriac because all I could explain was my stomach was upset (and it was that way for a long time) and the school nurse would act like I was trying to just get out of class all the time... I got labeled the weird kid. So I didn’t talk about them to anyone. I had at least two a month until I was first married at 22 and I told my husband about them (I finally could explain them), but still had no clue what they were. About 3 years ago (I’m now 36) I started Wellbutrin which was my “miracle”drug for depression, anxiety, and ADHD... until suddenly I was having these deja vu episodes weekly, sometimes 7-8times a day. It finally occured to me to look them up and it said they could be seizures. I didn’t believe it, until one day I had one in my therapist office and had to explain it all to me. That was this past June. So now, after 26 years or exactly what you described, I’ve got these under control...
jessmerrick So glad to hear you finally got them figured out! I had a very similar situation. It took me 14 years to know that what I was experiencing were seizures. I started having tonic clonic seizures at 12 and those are more obvious, but never knew what the other things were. My parents said it was “energy” or that I was psychic when I tried to explain it to them. So I stopped telling people about them. They got much worse at times and I didn’t know what to do. Who do you tell this stuff to? I thought people would just think I was crazy. So, it is such a relief to have them stopped by my meds. So grateful for to have this knowledge.
ariel on health I worry about my kids with them too. My daughter tells me all the time she has stomach aches and I’ve read there can be some genetic components (plus she’s had two concussions already). I love your channel and am so grateful you have taken so much time to sit down and talk about all of this!
I know how you feel. I had a traumatic brain injury mostly of my temporal lobe when I was about 10 months old. Literally up to the age of 37 yrs old I thought I had no side effects from my brain injury, other than a long scar on my scalp that my hair covers perfectly. My whole life I had crazy intense dejavu. Whenever I would describe it to people, they would say that they’ve had dejavu before too. Two weeks before I had a grand mal seizure I told my boyfriend something was wrong with my brain, I really couldn’t put into words what it was, because I didn’t know that dejavu was a symptom of epilepsy. I’ve had two EEGs a CT and an MRI since and a sleep study. My neurologist diagnosed me with TLE, sharp spikes on an EEG. Sometimes it takes half a lifetime to figure it all out. 750mg Keppra has stopped almost all of my partial seizures and I haven’t had a grand mal since.
Wow, that sounds scary. I know how people just ignored the deja vu. Anyone I told said they had it too. But, it's much more intense. So glad it's stopped. I am so grateful to have very few as well. My quality of life is so much better.
I have those seizures when I feel that I'm daydreaming and everything feels more real. I don't feel any smells I feel a huge adrenaline wave in my stomach and some stuff in my head that is the same kind of memorie or a dream that tell the same story and the seizure doesn't end till the story ends, I know what comes after what, I even can tell what is "going to happen" but it's really difficult for me to talk while having it. I can tell the whole story when it starts, although when it finishes I always forget what I was thinking about. I just remember some visual things that I was visualizing in my mind while having a seizure. I usually freeze and close my eyes just so I could speed up the "story line" of the seizure. Before having a seizure I know that it's coming, I think that's called aura, so when I feel that I start looking around or talking so it wouldn't start and usually it helps ( I just distract my mind ). Per 10 years I fainted 4 times and I had hundreds of those simple seizures. My mum and doctors didn't believed me at first so I had strong depression because I felt alone and didn't what's happening to me.
It is so hard when people don't believe you and when you don't know what's happening. I had both of those happen and it really caused alot of depression and anxiety for me as well. I hope that things keep improving. Some of those seizures sound like the "deja vu" and automomic seizures. I hope you get them under control. Be well.
Laura, I get the same, with knowing what is going to happen next, and if people are around, knowing exactly what the dialogue is about to be, word for word. But even though totally conscious, it's like I'm in a trance, so I can't mutter the words before they do, just to let them know I know what they're going to say.
I love it. It is exciting. I never bother to explain it you cannot explain what is colour red to a colour blind person. But it is cool. I take meaning out of it like indians used to ,triggering similar experience with poisons and drugs. We are real werewolves the folklore of them is originated from that too. My own theory coming from parallels between people like us and stories of werewolves. Great stuff. I had other seizures too. Been deaf for 4 years because I got facial seizures that gave me about 20 sentence a day to say and then my facial muscles began to jerk cutting words off. That scared everyone away from me,so that had its upside too. :)
Tiff Parsons When it happened to me, it was very intense. Really vivid and frightening because it was so sudden and seemed so real. I didn’t know why it was happening, that made it harder. I hope things are going better now. 😁
Same. Younger people tend to experience the most intense déjà-vu - mine lasted about 20 seconds and would literally just stop me in my tracks. I would almost disconnect from the people around me in shock and awe. Many times I’ve stopped mid-sentence while talking to someone, look around in confusion and only be able to utter, “I’m having the craziest déjà-vu of my life” and never quite understood when people would say, “maybe you’ve been here before.” To me it was a complete shift in consciousness and that kind of explanation seemed so trivial. I’m not epileptic but I’ve had three seizures in my life, we think due to medications. I’ve been reading a lot of spirituality and philosophy and physics concepts about consciousness. One of the more interesting proposals is that we may be connecting with our higher spirit or to another spiritual counterpart who is experiencing the same déjà-vu in a different galaxy or universe. It’s so batshit to think about but if you believe in “souls” (I’m unsure at this point) I find it fascinating to read the theories on how it interacts with your physical body and especially how our brains perceive it. I know this likely sounds absolutely insane but it’s at least fun to think about. I think déjà-vu and seizures could have a much deeper explanation than just faulty wiring or an overactive brain. Just my thoughts🤓
I am 30 years old and have been experiencing that déjà vu feeling since I was 14 years old followed by severe nausea and dizziness, sweating, heart pounding, head pounding just the most awful feeling in the world and I can always feel it coming on and after wards am just exhausted and I never knew how to explain it or if there was a way to explain it other than I must be crazy. The more that I’m looking this the more it makes sense. I have all the symptoms including the deja vu aura thing. Which is the worst feeling in the world I dread it because I know how awful I’m going to feel very very shortly plus it’s just a very odd and uncomfortable feeling. Also I have had rhythmic contractions or twitching in my face and in my fingers on my right side. involuntary weird head turning movement that I’ve done since I was a baby and neither me or my family have ever known why. The more I read into it the more I think that this is a very real possibility to explain all of these things that I just thought I was crazy but I don’t really know where to start because just calling around today and trying to find a primary care doctor and telling a nurse these symptoms. And answering a zillion questions about dizziness and things like that. It was an obvious just change in the way that that nurse talk to me like it change in his tone towards the end of the conversation and I feel he probably thinks that I am either dramatic or maybe a hypochondriac or just reading too much into it. But I never thought in 1 million years that there might be a legitimate reason for what is wrong with me and I know that most people are gonna think I’m crazy I have thought I was crazy for such a long time but now I think I might not be. And to hear other people say these things that I thought it could only possibly be me... The last 16 years I thought it was only me I never knew that there were other people out there going through this. I guess I just need some advice from somebody who is experiencing it how Can I get a doctor to listen to me about this and take me seriously and not brush it off and say it’s or stress or anxiety or me overthinking? Any advice from anyone going through it or who has gone through it would be deeply appreciated because For so many years I just never thought that there could possibly be an explanation and now to think that there might be is almost unbelievable please any advice at all and I would be very grateful
I have lots of thoughts on ways to talk to a doctor and finding the right person. You will ultimately need to see a neurologist. An Epileptologist possibly. They are a neurologist who specializes in Epilepsy. The descriptions of these experiences can sound very odd to people who have no knowledge of it. I would not recommend explaining to a nurse your issues. If you don't already have a primary care, it's good to get one in general in case you have any type of health problems. You can find someone and just say you want to" establish care" with someone to be your "primary care practitioner". No need to say anything to anyone until you see your doctor. When you do see them, it's important to read up and figure out how to describe what is going on in a way that sounds like it may fit these categories. Then you get a referral from them to a neurologist. Ultimately, the thing that will work is that once you believe that you are not crazy (which you are not regardless of whether these are seizures or not), you will be able to confidently share to a doctor and then they will listen. It took multiple neurologists to find one that was helpful for me, so it is a whole process. Main thing I recommend- Remember your experience is real. No matter what anyone says, whether it is psychiatric or epilepsy, it is real, it is hard, and you need support to deal with it. When you start with that, you can make things happen. I am happy to share more ideas. I know it can be hard after many years of not understanding and doubting yourself, but you are dealing with something that you need to treat, and things like non-epileptic seizures have treatments as well. I'm not saying you have those, I am just saying that no matter what is going on, you're not crazy and remember-"YOUR EXPERIENCE IS REAL, VALID AND IMPORTANT" and don't let anyone tell you otherwise. Hope that helps. Be in touch if you want more ideas as you start the process, because it is about being strategic when you have an "unusual", difficult to explain, confusing illness. I have multiple and have learned ways to get help. You can too!
It took me 14 years to understand that what I was experiencing was seizures, so I know the trauma that goes along with feeling like you are crazy, but I can tell you that you are not. It took many meds to find the right ones, but now I have almost no seizures and my quality of life is so much better and I am so grateful.
I can relate and share the same experiences and feelings of thinking that everyone just thinks I'm crazy or over dramatic or a hypochondriac e.t.c and that's so frustrating and a helpless hopeless feeling . It taken 35 years to get answers for me. But we'll all get thru this. God is with us . He brings peace.
Mine is simply I feel a slightly kind of weakness like a feeling of very sleepy or weak , (and Does not feel BAD ) and then I kind of extremely relax, close my eyes I can feel very very chill as a feeling of want to take a quick nap LOL , During all this.. I heard the voice of a fairy and she always say the same thing... and a Deja Vu with all of this at the same time... and then after about 30 more seconds everything is gone , and I can just keep on as if it never happened .... only happen for about 3 days about 5 times or 3 a day.. and only every one or 2 months , so I experience absolutely none of this for months and then again it happen after a few months. Now I honestly don't mind this at all, I don't care for it ... I was just curious looking info about it to see if is actually something really bad that I should worry.. I'm very surprise that many people also experience this similar things
I have that kind of Deja vue!! I HATE calling it that because It’s not like I feel like I’ve been in a similar situation. It’s “I’ve been in this EXACT situation before.” Even upcoming events I’ll think of are a part of the Deja vue, but how could I have such a thing happen previously when upcoming events are new? Then I panic after. Oddly, I came across this looking up potentially focal seizures for my baby.
3 years ago I woke up in the middle of the night with deja vu, weird smells, terrible fear, strange thoughts or memories, feeling of waves or a rollercoaster then it would crash only to start again a few minutes later. That morning I think I fainted twice in bed. By evening they had slowed down and I almost was too embarrassed to tell my husband. I was standing in the kitchen describing them when I said,” Here one comes again.” I woke up on the floor. I had fainted. My husband said my eyes were staring up and to the side and I just fell hard. After that day I was fine but every few months I have them but of much less severity but bad enough to put me in bed for the day. The feeling of fear...that is what I dread about these episodes.
I’m glad you told your husband and I really hope that you were able to get some help with this because it’s dangerous to be fainting and falling down. I know what you’re talking about with that feeling. It’s amazing that your brain can cause that from its own misfiring. I think I’ve never felt that feeling of terrifying fear or impending doom that I experience in my seizures in most of my life and I’m very glad. I wish you the best.
What kind of ''phantom smells'' do you get? I got a TERRIBLE smell of plaque, completely disgusting and overwhelming, and none of the other 4 people around me smelled it! Really freaked me out.
AzBboy I personally don’t get smells, but many people do and they can be varied. The most common I have heard is a burnt smell, but I believe any smell can happen.
I totally get that it's hard to put these into words but I have to say, this is an excellent description and something I find very helpful in understanding / describing my own experience. In particular, you do a great job of describing the difference between "normal" deja vu and the sort that happens in a seizure. For me I describe it a little differently but in the end I think it's essentially the same - I feel the usual "this has all happened before" sense, but then I get this extremely extremely uncomfortable feeling like I know what is going to happen next but can't quite put my finger on it. Incidentally, the few times I've tried to say something, I often can't speak at this particular moment. Even at the time I know I don't *actually* know what's about to happen, but I can't shake the feeling, and something about it does create a panicky feeling. It's interesting how these things manifest. Again, thank you, and I wish you all the best.
I really appreciate you saying this. It's always great to know when my videos are helping people. I get the thing about feeling like you know what is going to happen. I get that too, and it also freaks me out. The feeling seems so real, that's what really feels scary for me. Be well.
Ive been trying to figure out for years whats wrong with my daughter. She is 15 . she always will get the deja vu feeling is exactly how she explains it and it gets her nauseous and a weird taste in her mouth.. doctors for years send us to g.i for stomach issues and this Thursday the 26th she had a actual seizure.. it all ties in now .. we are waiting on a appointment with neurologist now
I believe I've been experiencing Simple Partial Seizures (self diagnosed). I'm 54 years old and never had a seizure. They started about 8-9 months ago. It starts off with a really weird feeling that I can't put into words, then I have a flashback type memory of a random dream then I get this bizarre surge throughout my entire body for a few seconds and then it goes away. This all lasts maybe 15 to 30 seconds. It's always the same dream flashing back but once the episode is over I can't remember the dream. I've had maybe about 6 episodes since they started. I'm in complete control, I don't loose consciousness, my body doesn't experience any involuntary movements and I am fully aware. What scared the shit out of me and made me look into this is that the last episode that I had two days ago occurred while I was driving to work. My driving did not become impaired what so ever but it scared the crap out of me. I'm terrified to go to the doctors for fear of loosing my drivers license. Any advise?
Flavia DePasquale I understand how scary they can be. It’s so strange to have these weird experiences and when I didn’t know what they were it was terrible. The fear of losing your license is real. I’ll be honest I have multiple times. I would say think about if you can talk to a doctor and weigh the importance of it with how much you need to figure it out. My doctors have been much more concerned when I had Tonic Clonic seizures than now. Sometimes they don’t take your license away, they just advise you not to drive.
I am so glad I came across your video! Thank you for sharing what you've been through with partial seizures - I believe I have been experiencing some of the same symptoms relating to confusion, deja vu as well but I am only new to realizing that they're actually seizures. About 2 weeks ago, I underwent a full on grand mal seizure - woke up in the ambulance and had to get some mri/catscan tests run. Now I have never before in my life went thru that severe of a seizure. So far, I will be seeing a neurologist in a few weeks to further analyze what may have motivated the seizure; however, my primary doc already prescribed me with Keppra, which I have yet to start taking. I'm a little nervous and would prefer to get the neurologist's suggestion on the proper medication. Thanks again, ~ Des
Hi! I am so glad it helps! I know how it is not knowing that they are seizures. It was very confusing for me. I also have grand mal seizures when I am not on medication. I have tried 12 meds. bc some worked, some didn't, others had horrible side effects. Now I am on 2 that work to stop all my tonic clonic (grand mal) seizures and almost all of my simple partial seizures. I hope it goes smoothly for you. An epileptologist told me once that a drug is only efficacious if it stops your seizures AND is tolerable. I wish you such the best. I hope the neurology appt. is helpful. Sometimes, it's just hit or miss with trying meds so know that can happen. :)
I’m curious about how people feel physically during their seizures. I usually feel very nauseous and then extremely exhausted afterwards. And when I was younger, I used to experience terrible migraines from them.
Levi Rolten for me, it was sudden and usually intense. Feeling “out of it” and anxious during the experience with emotions and sensory stuff. Then, I would get totally confused and unable to think afterwards. I also get exhausted. Have to lie down for a couple of hours.
Thank you soooo much for shedding some light on a really dark time. I’m totally in a similar situation and this is the only thing that’s really explaining it to me
okay there’s a huge chance i have seizures because this is EXACTLY what i experience but multiple times a day now. i either have epilepsy or i’m losing my mind. i’ll just be going on with my day and suddenly get EXTREME déjà vu and i freeze and feel INTENSE TERROR. it’s soo freaky! it’s so strong it feels so real and shocking it’s almost like i’ve dreamt the exact MOMENT to every detail but know i couldn’t have? or i get this RLLLY BAD FEELING like something very bad is going to happen. sometimes when i get the déjà vu and fear my lips almost act like i’m eating something when i’m not. or sometimes (this one is more rare like once every week or two) i get these things where it’s like i’m talking to someone ans then my eyes move away and lock on something like a daydream but i feel almost like i just fell asleep. it happens in seconds and it’s so scary, and i’ll feel like i’m asleep or falling asleep for a few seconds before i get this entire shock or shiver throughout my body and then i come back and feel anxious and confused. idk what this is. i’ve always had anxiefy and so when i tried speaking of the deja vu in the past my doctors said t might be anxiety, but now i have the déjà vu everyday and ik something isn’t normal because it’s so common, unles i have dreamt the entire 2020 and 2021 bc the déjà vu is so intense. the only thing is they normally last me a few seconds to 5 mins. could this still be seizures? i’m 18
Wow, that sounds really difficult and intense. What you described is very much like mine. I didn’t know what they were for 14 years and I felt like I was going crazy. They definitely could be seizures. Honestly, I have never heard of deja vu being anything other than something mild that people talked about. But mine was so intense I just couldn’t understand why no one understood that it was scary. So the other feelings you were talking about, I also experience after my déjà vu. I would have a really intense deja vu and then suddenly get this rush of adrenaline like a tiger was chasing me, and then I would have a sinking feeling like the world was going to end. So talking about intense terror is probably similar to the tiger moment. And when I finally read about someone else experiencing that bad feeling, they described it as a “feeling of impending doom” and to me that is perfect. The other things you talk about could totally be neurological also. The thing you described with the chewing, is usually called an automatism, and it’s also a seizure. Having these experiences come out of the blue is definitely one of the hallmarks of a seizure. Basically, especially with temporal lobe epilepsy, seizures can just be really odd. Also the amount of time you were talking about is also pretty average. After the seizure, the Post Ictal period, meaning after seizure, Can go on for a few hours. Being anxious and confused was exactly what I always felt. I literally felt like my brain was just fried and I could not think at all. It was like someone had disconnected my brain from my mind. I couldn’t make decisions and often got lost, because I would be in sort of a daze afterwards.I really hope you can see a neurologist. Because this would definitely be important to get help with. I have tried 12 meds, so don’t give up hope if the first one doesn’t work. Getting on meds that work really well has been the best decision for my quality-of-life for sure. Please let me know if you are able to get some help. There’s resources you can look up if you want to bring any information to your doctor. Some doctors only know the common symptoms of less common types of epilepsy, unless you see an epileptologist, it might be good to bring in some info that is clearly what you were describing. If you watch more of my videos you might get more words for descriptions. That was the thing that was hardest for me was trying to figure out how to explain it to a doctor. Hearing other peoples descriptions made it so I could more clearly tell them what was happening. There is a book called the Epilepsy patient and family guide, that I read it and had a lot of good info. If you need some help finding resources, don’t be afraid to ask I’m sure I can give you some links. I’m so grateful that my video could help you. Your story just sounds a lot like mine. I felt like I was in a living hell. I am just so grateful that I learned what they were. I hope you’re able to get some good help. Sending good vibes.
I've been wondering if my panic attacks (and by extension, panic disorder) are secondary to something like this. It's entirely possible that I'm just hoping there's something a little more... definitive, I guess, than a mental disorder going on. I get very spaced out and dizzy, sometimes it's hard to make words, and I often have spells where I just can't remember things. I know these are also very common symptoms of extreme anxiety (and a million other things), but I have two justifications for wondering. 1: I've never experienced the two big panic attack symptoms - the choking and heart attack sensations. I don't hyperventilate. In fact, I usually find myself breathing normally or sometimes catch myself holding each breath for a few seconds before taking the next one. My heartrate also doesn't increase *that much* - certainly never "races". No chest pain or anything. I know everyone experiences these things differently, but when roughly 9 out of 8 people complain about these symptoms and you don't get them, it raises questions 2: None of the SSRIs or antixylotics I've tried have done anything to help. Even the strong stuff only knocks the anxiety down. The other symptoms (particularly the dizziness and spaciness) remain. Furthermore, the severity of the symptoms doesn't seem to correlate with starting/stopping/changing doses. Not to say I don't have anxiety attacks (or at least frequent but brief instances of debilitating anxiety), but I've always been extremely high strung. A worrier, as my mother says. I'm curious as to whether my panic attacks are in response to something else going on. Sorry, just thinking out loud here
I think it's good to question things that seem more complex. Ultimately, we as patients know ourselves best. I also have anxiety and depression and I know that there is a difference. I thought for a long time my partial seizures must be psychiatric because I had never heard of any like this. I was diagnosed with Epilepsy bc of the tonic clonic seizures already. I think one of the key things is exactly what you said. If all of those psych meds are not working, and you don't have the hallmark symptoms, then is it something else? I did research and saw more neurologists. Once I started Epilepsy meds, it took quite awhile to find the right combination. I understand that it's not fun to have a psych diagnosis, but to me it sounds like you have real reasons to look into it more than just hoping it's not panic attacks. Because stopping them is the goal, I think finding a neurologist who will really listen and look into what you say more is important. Not many are like that. That's my only caution. Doctors love to give a psych diagnosis when they don't know the answer. It happens a ton with other complicated illnesses too. That book I read really helped me. I'll post the link to my other videos I think will help. The amount of anxiety and trauma I have experienced from my seizures is huge. So, I can imagine the anxiety around it is real, but the thing that needs to be treated first is the seizures. They will only stop with seizure meds. My favorite thing to say to people is "Remember, your experience is real." whether it makes total sense or not. :)
I don't know if you still use this account, but did you ever figure this out? I'm experiencing the same thing and am wondering if it could be seizures or it's anxiety.
I've had deja vu before alot in my teens especially when I was younger and when that happened my anxiety would skyrocket. mine is always like im repeating something over again or an event would happen and i think to myself this happened before and i think to myself am I going crazy.
David Kellar it’s such a bummer you have to deal with this too. I wish you the best. Mine are pretty much controlled with medication now and I am so grateful. They are scary.
My simple partial seizures were also difficult for me to describe until I read about the Alice In Wonderland syndrome. I thought I had migraines...with "auras" until the EEG results came back... And then they found a tumor in my brain... Ugh. Thanks for your video!
I'm sorry to hear about the brain tumor. I really do think it's so hard to describe seizures, that a lot of people don't get diagnosed correctly, or if they do, it takes forever. Wish you the best
My doctor has diagnosed me with focal undetermined seizures and I'm pretty sure it's something like this. I have had deja vu since I was in about 6th grade and its just progressed and in September 2017 I had a tonic clonic seizure and they put me on medication. and now ive only had deja vu but I have memory problems and it makes me crazy.. I would love to not have deja vu anymore. I really hope I will be able to get either the right medication or the VNS.
Mallory Richardson Hi! I agree that having focal seizures is still hard and upsetting. I tried 12 meds before I got all my tonic clonic seizures and focal seizures almost completely under control. It is totally manageable now. I recommend trying until you find what works, if possible. I got a VNS, and had a pain reaction, so I am getting mine removed. Didn’t know it could do that, so wanted to let you know in case you are going to try it. I have multiple videos on my experience. I hope things improve for you. Wishing you the best!
Mallory Richardson Here is some info on Epilepsy and Memory. It can be from repeated seizures, or meds, or both. ruclips.net/video/tYF0ip-wTio/видео.html
I was misdiagnosed with PTSD after a car accident because my seizures increased and the dejavu was insane. I was having these since I was 6 and remember telling people I’m having dejavu but no one would listen to me until I seen a neurologist after the accident. I hate these partial seizures ugh I’m on the struggle bus today!
Melisa M I’m glad to hear it finally got worked out. That is so scary and hard to go through something like seizures alone and when no one understands. I would tell people about the deja vu and try to explain what was happening, but people would just tell me they have deja vu too. Not the same! It took 14 years to get my diagnosis of partial seizures. I always hope that by having this channel, someone will get diagnosed sooner. 😃 Wish you the best!
OHHH MY GOODNESS!!! I'm not crazy! I keep having this type of feeling and I would always describe it as deja vu x1000 and everyone just thought I had crazy bad deja vu... until I had a 'big' seizure and was in hospital and it all stopped for about a month and now they've started again. I don't know what to do because I feel like crying after every one because they are horrible and I just feel fuzzy afterwards. Thank you so much for this video x
Wow, that sounds intense. I went 14 years not knowing I was having them also. I was having tonic clonic (grand mal) or big seizures as you called them, but did not know I was also having the partial seizures. I just thought I must be crazy. It was hell. I understand how scary it is to feel like your brain is being messed with and you have no control over it. I really hate that feeling. I always say that I just "CAN'T THINK" afterward. It's more than confused etc. It's like my brain is just not working properly yet. Which makes sense neurologically. Epileptic seizures are rapid misfiring in the brain. Your brain gets overwhelmed and it takes awhile to get back to normal. I'm so glad you found this channel and can know you are not alone. I am now on 2 meds and almost all my seizures are stopped. Once in awhile I have a very mild partial seizure. Now I have learned to be gentle with myself and rest afterward. It's really important to get them validated and hopefully treated. It's also important that other people in your life know the reality and danger with seizures. I hope you can see a neurologist if you haven't already. Stopping my seizures has improved my quality of life so much, it's amazing. I wish you the best. Look at the other videos if you want to learn more, or feel free to ask me any questions. It took a lot of trial and error with meds to get the right ones, so it can be a process. But for me, it was so worth it.
ariel on health I am seeing a neurologist - and currently waiting for an EEG rest to get more tests done. I am slightly concerned about driving though - is it still the usual 6 months for each simple partial seizure? - I was so close to taking my test before all this started 😭 Thank you for replying and all the advise in your videos, it’s helped me a lot 😊
Geeky Girl 70 I’m glad you’re seeing a neurologist. If it’s not enough help, at some point seeing an epileptoligist can be a good move. In terms of driving, tonic clonic seizures are where you are unconscious, and complex partial seizures are impaired consciousness. Those are the big concern. So, yes seizure free for 6 months. Simple partial seizures there is no impairment of consciousness, so it depends on how they manifest. If it doesn’t impair your driving, then your neurologist may ok you driving if they are significantly controlled or mild enough not to interfere. In the same way, your neurologist may not make you wait 6 months after a simple partial seizure if they are really mild. Hope that helps. Not driving was really hard for me. There have been many times where I had to stop driving to change meds, and before I got my tonic clonic seizures under control. That was really hard. It’s about freedom for me. However, now my current illness-M.E. is so severe that I can’t leave my house usually and I can’t drive now. It’s a sad thing not to have that ability. Be well!
ariel on health - thank you so much for replying, I am trying to learn as much as I can about what I am experiencing and you/your channel has helped so much thank you 😊
Since I was little I had seizures and had no idea what they were at the time. People would look at me like I was crazy when I would have an attack they didn't know what it was just assumed I was acting out. I had a serious head injury about 5 years old and my parents didn't take me to a doctor they thought I was ok but i didn't feel right. Understand what it feels like when you describe how you feel when it's happening.
It's so horrible when kids are not given the help they need to stop their seizures. Since I didn't know what it was, I didn't tell anyone. It's a scary world to live in. I hated having seizures. So grateful I am almost seizure free now, my QOL has highly improved.
Some times I actually enjoy them most of the time I do not... Mine will give me up to a 10 second warning where I can end a conversation or walk away from people. Then each second it gets worst and worst. Sometimes its the dejvu feeling but no matter what anxiety is involved. I can not carry on a conversation with people, i can try but my words are all jumbled together and I have no idea what i am saying. If I am trying to unlock a door it feels like the first time I am doing it and will take me awhile, even after the aura has ended, to be able to remember how to unlock the door. Finally feeling exhausted will last me for most of the day. If I have one I know I will have them about every 4 to 6 hours for the next 3 to 7 days. That is the anxiety part. Not knowing for the next 7 days if one of these will pop up to say hello. I am controlled with Carbamazepine twice a day. BUT my big triggers are lack of sleep, drinking/drugs and of coarse missing my meds.
Yes I get the warning feeling too and my words get jumbled there's the confusion and anxiety irritability if someone tries to talk to me or have me doing something while it's happening bcuz they don't realize I'm having a seizure and I didn't even know what sad happening to me all these years until a week ago. Finally a dr figured it out although I still have to go to my neurologist to have it confirmed. But I have every symptom and every sign of having these and nocturnal or sleep seizures plus I did have a staring seizure when I was 5 that my parents and drs recognized but everything you said here I can relate to
Yes, I have NF1 and I some times get these(specifically triggered by certain scenarios), and this video would help in better explaining it to doctors. Plus I am not sure if they are related to NF1 or not.
I don't know what NF1 is. I do think that it helps to have other people with seizures also describe them, because it is so hard to do. I felt like people would look at me crazy, and many have. But, ultimately I remember that your experience is real. Whatever it is, even if it doesn't make sense, it is real for you and can be debilitating. Also, there is nothing to compare seizures to, so that people or doctors will understand. Literally, I have never had an experience that was not a seizure that I can tell them what it is like. Nothing else is. So, doing the best to describe it is all you can do. Check out the book I talk about here if you want more descriptions to share with your doctor.
NF1 stands for Neurofibromatosis Type 1, it is a genetic disorder with effects different people very differently. It can either occur as a random case(for me it was random as none of my parents had it) or one can inherit it from either of the parents(If one of the parents has it then their is a 50% chance and if both have it then their is a 75% of baby having it - If I am not wrong insemination can be ued to avoid it). Many times, even the doctors have a very basic idea about it unless they are neurologists or dermatologists. And for me it was very difficult to share my experience with doctor's, but your videos are really helpful in explaining it. They are also helping me to better understand myself. Thanks again for the effort.
And my seizures, they are triggered by excessive stress and/or fear. I try to avoid all such situations. And usually they can start with shaky legs and then their is a stage where I do have the consciousness and awareness but I do not have any memories of it. But this memory loss happens very very rarely and it is more like I avoid such situations which can trigger any of these.
i felt really stupid trying to describe the episodes i’ve been having to the doctor. like “yeah i keep remembering things and then i very remember something and feel sick and scared” she said she doubts theyre seizures, but i worry i just did a terrible job explaining. i do have an eeg scheduled but my episodes have been happening months apart, so i doubt anything will even show up
I was just looking true you tube and came across your video and i was o my go some one out there somewhere can actually describe what i feel and knows exactly what i have been going on for 25 years.same type of tonic seizures at 13 and focal seizures after brain surgery .
Paulina Nunez sorry to hear you’re dealing with that. I feel grateful to know there are others out there as well, helps to share experience and understand.
2 years I suffered with this I thought I had a trapped nerve lol. The worst ones were night ones,they would occur in my dream and wake me up,I would have trouble breathing and it would rise up and my arms would feel squeezed as if by a blood pressure cuff and then subside that was always the pattern of mine,day or night. I have had to lie down on the floor of a changing room because lying down helps. My neurologist took ages to make me understand these were seizures and now am on medication. They have stopped,I hope my night ones but I get small ones occasionally in the day but however small the exhaustion is overwhelming and I cant stop yawning.
I am so glad that you have figured out what they are. Also, getting them under control is so much better for quality of life. I had to try 12 meds to get the best control, and now I have almost none. I don't know if you want to try more meds, but sometimes that is the ticket to none. Wish you the best!
RinaTheRoo I’m so glad you found out! The best step is to know because then you can treat them. Also, for me, the fear and confusion around not knowing what was happening, added a whole other level of trauma. Hope you are able to get some help. 👍🏼
I'm having seizures now for about 4 weeks. I'm aware of what's going on, but at the same time, I can't understand what is going on around me like I kinda feel like everything doesn't make sense. When I have them, I can't control my face at all like my breathing is controlled, but I just can't control my weird facial movements, and it happens in fits. Afterward, for 2 or 3 days, I just feel depressed as hell and not all there, or I feel head sick. It cripples me literally. I'm only 22 and after about falling out at work twice because of them does my doctor start taking it serious.
How does the description of a “Forced Daydream” sound to you, regarding Simple Partial seizures...?? It’s sad that I’ve used that description all my (34 years) life. Yet no one I know understands that description. Now that I’ve heard your description and seen other people HAVE these types of seizures on video. I really feel like it’s a good way to describe them 🤷♂️
Rick Boney I think that makes sense. Some people describe “absence” seizures as like someone is daydreaming. But the person is not as aware like in a simple partial. It’s hard having these and no one understanding. It took me 14 years to learn what they were. I’m glad you can feel like you’re not so alone now I hope. I wish you the best in dealing with them!
Do you have strange smells prior or during your partial seizure? I haven't had the deja vu, but I get the chemical smells, I get little spacey and have very profound fatigue! It takes a while to get over it like you said; but the confusion and the palpitations and anxiety are unbelievable!! I'm on my 4th medication and have take 2 medical leaves from work so it's been frustrating. I think this medication is ok, so far but my memory is not the best
mnaik I don't have smells. I know that quite a few people do. I get very spacey after mine too. I just can't think when I have one. I try to plan so that if I am out and I have one, I have a safe way to get home because I've had some bad situations due to having a seizure out of the house.
"Do you have strange smells prior or during your partial seizure? I haven't had the deja vu, but I get the chemical smells, I get little spacey and have very profound fatigue!" Holy fuck, your partial seizures are EXACTLY like mine, except sometimes I experience extreme Jamais Vu, and other times extreme Deja Vu. I also have the same olfactory hallucinations you have. It tastes like I have paint in my mouth and I smell a very powerful, overwhelming scent of paint. I call them "paint sensations", or "painters" for short. I have these "paint sensations" right before my partial seizure generalizes and I go unconscious.
mnaik I do. I have burning smells and today I had one that smelled like my husband's cologne but it was SO overpowering and it poured out of the fridge.
I have seizures similar to this. For me, it's often when I question myself on something that I don't know the answer to (e.g. what was the name of that song again?), and then that question lingers. It triggers a snowball effect: first it's the question, then it's the worry that a seizure might happen, then it's knowing that it WILL happen, although not knowing when or how bad, then comes the seizures- the anxiety is not over yet, I'm still wondering what's gonna happen or how to defend myself. Eventually, it all falls back down, and I'm ok again. The name of the song doesn't really matter anymore. I can think about the question all night long and I usually don't because it's already stopped troubling me.
Epilepsy is so hard. I find that when a seizure starts I tend to feel upset that I can tell it's going to happen. Afterward in the past, I would always doubt whether it was a seizure. In the post-ictal state I am very confused and so that makes sense.
I used to get really really intense Deja Vu. I don't really get them now but when I do they're very intense, probably more intense than before. I have been diagnosed with multuple anxiety disorders but sometimes I feel like the seizures overlap with anxiety and maybe even be semi misdiagnosed (like the panic and anxiety that comes in before/after). I've been trying to look into it more but I know I won't be diagnosed anytime soon because my parents will never believe me or even intertain the idea. Oh well.
Never had any grand but definitely the partials. Altered consciousness. Dejavu. Odd sensory perceptions of words repeating over and over in my mind. Have hardly any memories of my life... Only started to remember the series of weird events which were triggered by an odd Metallic smell/taste(but different) or other various States
Many people have a taste or smell as part of their partial seizure. I have heard "burnt" the most, but I recall someone else saying the "metallic". It's rough to have all these. Having no memories is hard. I still can only remember times that I am pretty sure were seizures since they are vivid and strange and I felt confused and off. Wish you the best!
I can't speak for everyone with epilepsy, but I have actually grown attached to my seizures. I don't mind having them, and sometimes I feel as though they are an experience that I somewhat enjoy, although most of the time they are scary and exhausting. Call me fucked up in the head, but I accept my seizures as a part of who I am.
Well, I'm glad you no longer have them. "The worst feeling I got was a sense of worry at the deja vú" I get that exact same feeling EXCEPT I have a Jamais Vú feeling. It's like a feeling of impending doom. Anyway, I hope you live long and prosper! I'm glad you don't have them anymore! =)
I can so relate to this and it's so hard to explain to others and I feel like nobody understands me. It's so frustrating. And I hate it. This is tormenting. I'm not on meds and it's out of control. I also have sleep seizures and I am just now getting a diagnosis I'm 40! I've been misdiagnosed my entire life except that they knew I had one seizurewhen I was 5 that's when it all started for me but I didn't know what was happening to me. It's all so confusing. And the adrenaline rush feeling up my spine into my brain and in my stomach then the confusion and irritability and muscle tensing and my brain feeling like it's being shot up with novocaine then the terrible smell and taste that smells like rubbing alcohol or nail polish remover. And yes the fear feeling the impending doom is how I've said it. But I was diagnosed wrongly at 19 with bipolar and put on toxic meds for years that made things worse. Then diagnosed as anxiety and depression disorder and sleep disorder and put on more toxic and not helpful but harmful meds for more years. The drs always say it's just anxiety. But the past 3 yrs it's gotten so bad that the seizures aren't stopping or letting me sleep and destroying my health and I am trying to hold it in not let ppl see it which I have been doing so long hiding in my room and it's gotten to a point where I can't fight thru this anymore I knew something was wrong neurological and have been in and out of the hospital trying to get help with no help and even thrown into the psych ward which then they realized I wasn't crazy something else was wrong well just everything your saying is what I relate to. But can't explain to others. I have tried to tell my family and drs but they just say it's in your head or anxiety. Finally a dr a week ago said I believe I know what's going on the sleep seizures and partial focal aware seizures when I looked it up boom it was like wow now it all makes sense this is the only diagnosis I've ever had that does make sense. My counselor took me off the antidepressants, antipsychotics, sleep meds, and antianxiety medication 7 years ago things actually have gotten worse since but I think that's just because you can't just take someone off of those kinds of meds especially that many that fast and they already are having neurological issues like these seizures (which we didn't know) but you get what I'm saying. Plus I have low vit d low potassium e.t.c and I have battled anorexia thru my life also so didn't help the malnutrition issues and other health problems I have. But yeah this is such a hard thing to deal with especially not being in the right environment like right now I can't be in my bedroom because it's being worked on so I'm on the couch and my mom and brother and their friends make all this noise and all the lights e.t.c very overstimulating for me so with not having insurance and can't see my neurologist to get meds and being in this environment and not having any help or understanding from others then having other stressful situations going on right now plus my other health issues acting up like my metabolic disorder and arthritis and ibd e.t.c e.t.c this is too much the seizures are going almost non stop with no recovery time. I just can't wait until I can get my insurance back and see my neurologist so i can get the help I need bcuz the er won't do it and I'm in torment the ppl around me dont understand that I'm going thru all these seizures while being awake they think I'm going crazy because of the jerks and the confusion irritability and anxiety the seizures bring also they don't understand that I can't help it. They try to talk to me while I'm going thru it and it's over stimulation to me and I'm already feeling over whelmed and confused and in torment from the electrical zaps going thru my body the adrenaline feeling rushing thru my brain spine and stomach is a horrible feeling but ppl don't get it bcuz they never felt it. And I've been hiding things so long that now I am letting it out they think I've suddenly went mad or using drugs which I proved isn't true by taking a complete drugs alcohol screen and the psych ward let me go after a few hours instead of keeping me 72 hours because they could see it's neurological at nature not a mental health issue although it does cause me to end up with irritability, anxiety and depression at times. If I had meds a better environment and can support system I doubt I'd have the anxiety and depression so badly that the seizures bring. But I'm talking your head off lol sorry just finally found someone I can relate to thank u for sharing this v such a vulnerable thing but so helpful to so many others. God bless you
17 - 22 you only remember seizures - you poor poor kid! My best thing with SPSs is that I appreciate what epileptics who have way more intense stuff than mine actually go through - must be hell! I'm blessed with mine TBH
Thank you for your lovely message! Since it was such bad trauma, I still think about it since it affects me so much. But, seizure free for almost a year now!
@@arielonhealth I get SPSs. I get them every 3-4 weeks over a day or a day and a half. Neurologist tried me on TEGRETOL and I got Stevens Johnson Syndrome. Keppra seemed to make me depressed so I just cope sans meds. I have enormous appreciation for what “real” epileptics go through! Thanks again Ariel
No fun getting Stephen Johnson’s. I tried 12 meds before I found the best two for me, it’s a pain, but if it bugs you, you might try different meds. You are a true epileptic too. It’s still hard and seizures of any type are intense. Wish you well 😊
I think I had a siezure from sleep. I woke up thinking it was sleep paralysis and in the dream i wanted to call my mom or 911 because my body physically hurt and tingled. Felt wired. And I felt the impending doom. I can be totally awake and my vision goes out and things stretch and swirl and I'm having issues with twitching amd moving and convusling. I remember texting my bf at 3 in the morning saying I'm scared. And hes like nightmare? Sleep paralysis? Fever dream? And im like idk my head feels loud, my vision is going in and out and my body feels weird. And its scary in my head. My dreams weren't ever scary. And this happened til 6 am. I cant keep thinking its sleep issues or anxiety. Because I don't think im stressed. I dont have reason to be stressed put of the blue like that. And the vision and dizzy issues. I thought i had alice in wonderland syndrome. But my body closer to night time and sometimes during the day I can twitch hands or have tremmors and convulsions. I think I'm weird. Im not really connected to my Brian. Dissosiating usually so I can't tell if I made that happen or I just did that for no reason. I have an MRI next week though at least. I have anxiety and depression but the meds made me feel numb and made my brain zap
That sounds horrible and totally scary. Whatever is happening it’s traumatic, so that can add to dissociation or cause it with PTSD. You can get PTSD from Epilepsy. Sending good vibes. ruclips.net/video/TqVUQyfr6Ag/видео.html
With my focal seizures the deja vu becomes so intense that it feels like false memories, so the deja vu starts and then lots of things come flooding back to me and it just goes on with more and more memories coming up. Afterwards I can’t remember what those memories were but I know they weren’t real. It’s like a different reality, someone else’s memories? But it’s so terrifying and crazy intense. It’s like I’ve just been told the biggest secret in the world and it’s all on me... the most intense fear & I could imagine with loads of anxiety. I’m diagnosed with the seizures but never see anyone saying the deja vu becomes ‘false memories’ so I just want to know if anyone has this too
Lois Wilson that’s rough. For me, it gets so intense that it’s really scary for me. Almost “too real” that this has happened before. I would say for me it doesn’t bring up memories that I think were not true, but rather brings up an intense feeling that this moment has happened before. Other similar focal aware seizures include memories and it’s possible to have one right after another. It may be that it’s multiple seizures in a row. I’ve found that most people have a somewhat unique version of these types of seizures.
Lois Wilson I used to have a feeling I was going to “make the worst mistake of my life”, I think similar to what another person called “ a feeling of impending doom”. That may be similar to you “ feeling like the secret is all on you, I don’t know. But severe, intense anxiety with a severe horrible “ending” or “responsibility” is kind of what I feel.
Snap...... Plus my sense of smell is intense to say the least
Omg yes! My feelings are exactly like this. And when I mentioned it as a youth, my parents would say they used to get Deja Vu too. But it is so intense that I was always thinking, how can you talk about it so calmly if what I’m feeling during these is what you’ve experienced too?!
I definitely have the same thing. I have had so many where I know for a fact aren't real and it feels like a "past life" it feels like I for sure have been there but I definitely haven't been. A surge of adrenaline hits me and I want to throw up and I get so scared. I have a hard time finding false memories as well from other peoples experiences, but I can tell you I have been through that. At my worst I could look at a random house and picture the inside lay out and feel like I've lived in there. I felt like I was out of my mind. But I was put on lacosamide and it's helped. I only have tonic clonic seizures now when I drink too much. But the medication has taken away almost all of my partial seizures. I have a hard time dealing with the partial seizures when I have it especially when I can't find someone who deals woth the same thing. So if you ever need, we can connect and talk about it. I know how bad it gets. At my worst I felt like I'd rather die than deal with it multiple times a day. Hang in there
I’ve had these focal seizures since childhood, my parents coming up with the term Deja Vu for me when I tried to explain to them after they started. They were 90% of the time in my bathroom. Now in my own home, they are still almost always in the bathroom. Last November I was about to leave the upstairs bathroom, had that feeling. Then woke up in my bed 3 hours later with a bruise and no memory of getting to my bed. Someone told me after they heard one loud thud from upstairs. Last week, I had that feeling in the downstairs bathroom. Was about to pee and wait for the feeing to pass, woke up a while later on the floor with my roommate and paramedics staring down at me. The rest of the weeks memories are hazy. But my roommate said they heard a thud, asked if everything was okay, heard more thuds, then broke into the bathroom and saw me on the floor foaming at the mouth, twitching, face blue, jaw locked tight. Stayed in the hospital one day and they said those have been seizures my whole life and my brain is learning how to do them better now? So I went from just the partial focal to it spreading to a tonic clonic. Not sure what kind it was last November since it started as a simple partial but no one was around to witness anything. I lost memories from both times though. It’s very frightening.
Having seizures is so scary. That’s why I have so much trauma from it. I really hope you got some good help, glad you figured out what was happening.
I always have mine in the bathroom too.
I started having deja vu seizures a few months ago off and on. Describing it to people made me sound like a lunatic. Glad I stumbled upon your vid and realized that I'm actually not losing my mind.
Mr. Awesome Cat Fuzzypants So glad you found my video. I realized, there is nothing in the world like a seizure, so when I use words that have a meaning to someone normally to describe a seizure (which is all I can do for someone who has never had one) it sounds crazy, because it’s not really explaining it. Talking to another person with Epilepsy, you can describe it, and with those words, you understand the different meaning they have in regard to a seizure. I want to make a seizure “dictionary” and tell people about the fact people who’ve never had a seizure, including doctors specifically, will take what you tell them in the context of how they have experienced it, which is not the same. I didn’t tell anyone for 14 years because I thought it sounded crazy to describe them. But I knew I wasn’t crazy. That was a hard situation. Sad that we had to go through it. Hope to help change that someday😁
Losing my mind was my over whelming fear when I had started having FAS, it was in the back of my thoughts all the time "When will I just randomly snap and never come back?" I told a therapist what was happening and my fear and he looked at me with pity for the anxiety and fear I had experienced, because he knew the answer. he said "Dane, if you are not "Crazy" by the time you are 25, you will never be that person you fear. real mental disorders happen before you finish young adulthood. Are you "Crazy" now at 40? (no) Then you will not be that person in your fears" This simple, in-fact very simple, piece of knowledge, has changed my life. I now see my FAS as singular short episodes that are just a descriptor of who I am, like I have green eyes, brown hair, FAS sometimes, I am tall, etc.. It is not changing my personality or who I will be.
This was extremely helpful
Yes! First it's the intense deja vu followed by a feeling being in a dream, and then finally nausea. It would take me a good hour or two to get over the experience.
Sounds very average, like many of the experiences people have. I hope you’re able to get good help.
This just summed up symptoms ive had for years. I had no idea they were seizures. it all makes sense now. im waiting for a neuro referral. i experience the deja vu that is extremely real, feeling like my car or other cars around me are moving when theyre not, sensory issues, hearing music thats not there, ringing and muffling in ears, and so much more. thank you for sharing this! god bless
Cindy Jackson so glad it helped. I hope you get the help you need. I always say that even if they’re not seizures, your experience is real. I’m hoping for the best!
Partial seizures are just strange. There really are no words to describe the experience. No words to describe how or why a sudden feeling of impending doom or a strange smell appears. Why I feel a feeling of numbness like you'd get if you slept on your arm, but on my whole left side? My left eye starts to blink uncontrollably and I start to create so much more saliva, sometimes to the point where I'm drooling. If I don't drool, it feel like I'm drinking a cup of my own spit. I can't understand a word you're saying even though I can hear you just fine but I'm hearing senses overpowering random music in my head.
These changes in consciousness can really only be comprehended by those who've had them. Like feeling conscious and unconscious at the same time....
Great video, came out on my birthday XD
My partial seizures feel like deja vu/ impending doom too.
Same here, except sometimes I feel Jamais Vu, but I always feel the impending doom part combined with a weird taste and smell.
My ketogenic diet has got rid of them for just now- check it out. It stops people especially kids having seizures
FunnyBuns1 They are very strange! Hope you get some relief from them.
Truly something that only those who have experienced understand
I am newly diagnosed but have been having seizures my entire life. It was only from my dogged self advocacy I was able to get my diagnosis. If it weren't for my ability to describe the seizures, I wouldn't have been diagnosed. My doctor was able to follow up with a 72 hour eeg to confirm, and we were lucky enough to log an event. Description is so important! Thanks for sharing 😁
So glad you were able to, good job on self advocacy!
This is the first time I’ve heard someone that gets it! I always describe it as a rollercoaster that I didn’t ask to be on.
I totally get you there!
I can feel it coming in my head, like a pressure feeling , so
I relax, and prepare myself to loose control over my body, I lie or sit down otherwise am going to fall, it feels as if am drawing back into my self, i feel like am in the Center of my head while it becomes dark around me. It takes all my energy away while its happening. I feel panicky and scared.
I can feel it in my head at first it’s like a some sort of pressure coming down and consuming me. My brain starts to shut of and I am very sleepy . I get very sleepy and tired when it’s happening. My head falls down to side when am laying down or forward if am sitting up straight, and my eyes close
I start saying prayers in my head because I get anxious.
I can hear things happening around me so am conscious but at the same time I am detached. I can’t talk while it’s happening nor can I respond to anyone or move my body, my body feels limp and weak.. i get a rising feeling in my stomach like when you are in a roller coaster and it’s going down fast, also i get this feeling of nauseousness in my stomach. I start to swallow a lot during it and for abit more after it. It last for about minute and a half max or 15 secs minimum, then I come back again slowly to myself. I feel weak and tired after it.
I feel fine 10 minutes later
When it’s for 15 sec or so less symptoms present themselves and when it longer like a min or so then all the symptoms show.
Or
Annabelle Lande what is witnessed exactly if you you don’t mind sharing hun x
This is what I experience below
I get a warning that it’s going to happen, the warning feels like am going to blackout.
some sort of sensation comes down from my brain and consumes my head and body.
It’s very hard to explain
I get a feeling of extreme dread and fear.
I have started to relax now, and prepare myself to loose control over my body, so I lie or sit down, when it is happening.
(My last one I didn’t have a warning )
The next stage feels as if am drawing back into myself as if am fainting, while my eyes become dark so I close them. Am still aware of what’s happening, I dont loose consciousness. This experience takes all my energy away.
My brain starts to shut of and I get very sleepy and beyond exhausted while it’s happening and afterwards aswell.
My head falls down to side.
I tell my self to be calm and that it will be over soon (in my head) I feel very anxious and fearful during it, a feeling like am about to die. I get a feeling like when your stomach drop when you are on a really fast rollercoaster going downward. It’s aaccompanied with a feeling of nausea.
I start to swallow rapidly during the episode and also a while after it has finished.
I can’t talk while it’s happening nor can I respond to anyone or move my body, and I don’t have the ability to snap out of it
my body feels limp and weak I can’t lift my arms or legs and I can only stare blankly. I don’t have control over my body so
I have to let it run its cause.
As am going more and more into this state, any noises, eg tv, any small talk, cars, radio or whatever else quietens down and for split second I dont hear anything at all but before long they start to pick up the volume again as am coming back to myself.
It lasts for about minute max and 30 secs min
I am aware of everything happening from start to finish
I come back again slowly to my normal self. I feel weak, sleepy and tired after it.
I have epilepsy but in my specific case, I only ever get them in my sleep. My nocturnal seizures are really intense and they usually involve a full-day hospital visit with several hours of recovery. In the hours after my significant seizure events, I've apparently done things where I seemed fully aware of what I was doing, but I personally have absolutely no recollection of experiencing.
Focal aware seizures happen to me really frequently. At this point in my life, it's almost once a day or every other day. Earlier today I had one while making myself some coffee. I always feel as if my life at that very moment is going through something incredibly life-changing, and that the only thing that I could do is try to remind myself that I am alive, and that I am experiencing something important. The sudden stomach-turn, the freeze, the hyperfocus on loss-of-focus.
I never actually knew what focal aware seizures were called up until now. People have always told me "oh you're probably just zoning out haha that happens to me sometimes" but they do NOT understand how deep this sensation digs into the entire expanse of your psyche. You explain the general sensation of it extremely well, and I actually finally feel like I've really been seen.
I’m so glad it helped to hear my stories. That sounds horrible. I had 90% of my tonic clonic seizures in my sleep. Many, many focal seizures in my sleep and daytime. I’ve been on meds for 20 years, tried 12 meds, and also now take bio identical hormones and have a continuous glucose monitor and no seizures of any type for a year. First time since I was 12 years old! I hope things get better for you. My life is so much better and my QOL is much better. Seizures can devastate life.
It’s the hardest feeling to describe, I had one about a month ago and it’s made me very paranoid. My seizures have been under control for 5 years and the last time I had this feeling was my freshman year of high-school, I’m now a freshman in college.
Now I’m really conscious about my meds and when I take them. My brain has been in a fog since it’s happened and I’m at that age where I should be independent, getting a job, expanding my social circle etc.
but I know that driving with me behind the wheel would be a danger to myself and more importantly others.
Thank you for this video, I originally chalked it down to just a panic attack but the more thought I put into it I realized it was a focal seizure.
I’m at a loss at what I should do.
Glad I could help with your understanding.
I'm 20 years old and I've been sobbing the entire way through your videos. You've helped me tremendously and words couldn't thank you enough.
miseryschewtoy wow, I am so grateful I could help. I know this whole process of learning and having seizures has been such a hard thing for me. I wish you the best. Know that there is support 😀
Thank you soooo much! My twin boys have both been diagnosed with Temporal Lobe Epilepsy over the past year. They are in the thick of this confusion and it's incredible to have you describe what they are trying to understand themselves. Thank you!
It feels better to know that there are people who understand the way it feels and who can help explain it this well🙏🏽🙏🏽
Courtney Williams I’m so glad you find this helpful. I always felt so alone and it’s good to know for me also that there are people out there who understand
I suffer with this exact same thing and it’s so comforting in a way to know I’m not the only one. I’ve had neurological tests and the doctors have failed to diagnose me. They have always put it down to anxiety.
I’ve recently been battling with these seizures a lot lately and my doctor has agreed to refer me to another neurologist for further tests. So fingers crossed I can get something to help.
It literally takes me days to recover from one single ‘episode’ and it seems to take me longer and longer each time I have them.
Thank you for making this video!
I hope things go well with your doctor
Thank you for being brave and making this channel. I recently had to go the the ER because I thought I was having a stoke. It is the 3rd time it has happened to me. I was lucky and had a neurologist recognize that it was a focal seizure because it was the right side of my face affecting my word finding speach and vision. My consult with a epileptologist isnt until Aug 3rd. After watching you videos, I have had SEVERAL of your experiences so many times I lost count and now Iam rethinking my entire life. Thank you, Thank you, Thank you, you are helping me so much until I get into the specialist. Julie
So glad I could help 💜
I had deja Vu and it was communicated to me what happened or will happen will turn out 100% peaceful and loving. It felt like I went thru the imagery billions of years ago. I had the most fear I ever felt and my pineal gland felt like it was gonna burst. I knew it was Jesus Who ended it as promised and I kept asking Him if He would let if return. I was reassured of the mental imagery of white curtains securing that head feeling
I saw a useless neurologist that did a 3 day EEG and a MRI. He never called me with results. 6 months later I called him. His nurse said everything is normal I just had a mild change on my white whatever. I have no idea. I think is my memory. I have this deja vu feelings at night, while driving and it’s like I entered a dream.
My stomach drops and the more I move the worse it gets. I cannot swallow my food and if I’m driving I can’t turn. When I had the EEG, I didn’t have one. My cousin saw me having a few and she asked my mom why I gagged. It was my stomach dropping. My brother is epileptic and he was on tegretol all his childhood. So my mom thought what I have was nothing.
Wow, that sounds really scary. Usually they’re talking about white matter, which is part of your brain matter. having any kind of a change or lesion in your brain can cause seizures. I would definitely see if you can get your hands on the records, even if you never do anything with them, because they can be useful at some point in your life, those tests take a lot of work. I have had multiple MRIs and video EEG, and I should get the records for myself as well. it sounds very concerning that you’re having this sometimes when you drive, I actually kind of recognize the stomach drop feeling but I haven’t had a gagging happen. I also did not have any seizures while I was having the EEG, a lot of doctors will say that if you have no seizure activity on an EEG that you don’t have epilepsy, however, that is not true unless you were actively having a seizure, it may not show up. Heck, there’s a lot to debate about everything when it comes to the brain and ultimately, I think you need to believe your experience and to find help your need to find someone who is willing to listen to you. I had to go to multiple neurologists and epileptologists to find someone who would take me seriously. It’s stupid and it shouldn’t have to happen, but for your safety, while driving and the rest of your life, and your quality of life, getting help might really be good. I am on three meds and for the first time in my life I’ve had no seizures of any type in a year. I am completely different life than I did years ago when my seizures were out of control completely. I wish you the best, I really hope you can get some help and stay safe. I know it sucks, but I had to stop driving for seven years. while I got my seizures somewhat managed. It can be worth it to make sure you’re alive and everyone else is safe too.
@@arielonhealth I am seeing a specialist. He specializes in seizures.
He said that my seizures is deep down the brain tissue snd that’s why it doesn’t show in the EEG.
He said I am lucky that it didn’t generalize d because is deep in there. What I have is Auras/ focal aware seizure. I knew I wasn’t crazy! Thank you for your reply!
Your videos have given me comfort. I have struggled or I should say avoided even thinking about my condition. It feels like a weakness or that I am losing control of my mind and that’s scary. But your videos really did help ground me again to remember that these are short temporary episodes and there’s no indication that they’re causing long-term damage or that they may increase in frequency. I had my first focal aware seizure when I was in College and then did not have another one for 25 years. I have since had only a half a dozen in the last 10 years and I’m grateful for that. Without education and learning, focal aware seizures can be mentally a really scary thing. For someone who feels like they have control over almost everything in their life to not have control over the one thing that is the most important thing in my life my brain is emotionally draining. So again thank you for your videos you are helping people that you don’t even know.
I was diagnosed with Temporal Lobe Epilepsy with Complexed Partial Seizure at age 43.(I had my first and only baby at 40 and during labor I experienced Ecclampsia and I believe there is a definite correlation). Ive been on medication and I am grateful for this medication because I dont have the seizures as often. Im now 49 I have the De Ja Vu moments that are so strong that it would just pause my life and then I would get very nervously afraid and confused. I didnt know they were seizures...smh...This video has helped me not feel so alone becuase I dont even talk about them to anyone...I guess I should tell my doctor.
I hope you found a doctor who understands these seizures and helps you. They made me very nervous and confused. It's so stressful out of the blue to have a seizure. Mine are almost completely controlled with meds now and I am so grateful.
I'm really struggling with these, I have had two tonic clonic sezuires but have had these weird de ja vu things since I was 9 , they are linked to my dreams I swear... it's like a sudden I've seen this before exactly like this and then my stomach feels sick I feel dizzy and I sweat loads and I start doubting whether life is real and it's just me creating it , even trying to write it doesn't make sense , I just can't cope with it anymore and everyone thinks I'm crazy :'(
Gabs varley wow, that’s rough. I understand when people don’t get it. I had a doctor who didn’t believe me. But, those symptoms sound a lot like partial seizures. Do you have a neurologist? Getting your TC seizures under control is very important as well. I wish I had gotten on medication sooner. Having seizures can be so scary. But if you can get the right help, it can get better. I’m having almost no seizures of any type at this point. I wish you the best.
Holy crap I get like this also, it's like I suddenly disassociate with reality and then start to freak out but it's really brief. I think nothing is real and it makes me feel like a crazy person lol
You're not crazy!
I feel this exactly 🥺
Oh so emotional for me to hear the same story as I my own. 10 years into this caused by aneurysm. So perfectly and exactly the same as me. Stevoxxxx
Stephen McGinn it’s a rough situation. I hope things improve for you.
Have you found any way to stop them? Mine are getting real bad and its scary.
Thank you so much for making this video. About three weeks ago I was diagnosed with temporal lobe partial seizures (TLE). Four weeks ago for the first time I had a grand mal. I had crazy intense dejavu my whole life or really weird moments where I couldn’t tell if I was moving slow or fast. Two weeks before my grand mal, I finally told my boyfriend something was wrong with my brain, but I had no idea why I thought that.
Hi! I had some messages that got misplaced. I'm glad you found these videos helpful and hopefully things are going better now.
At the onset, I get this intense feeling, as if I'm on an elevator, and I'm either leaving the top level to go down, or vice versa. It feels like the beginning of an elevator ride, or a bit like those 2-3 seconds over a loop on a rollercoaster. Then there's the deja-vu, of course. Auditory sense is on overload. Ringing in the ears. No strange or familiar smells, nothing olfactory. Fully conscious, but feel slightly paralyzed. Overwhelmingly anxious, scared, wanting it to be over. And they don't last long, obviously. But the weird thing is, after an episode is over, I look forward to another. That is, until it happens again, and I get scared all over again.
I used to get them periodically, from the age of about 22, until I turned 44 in 2008. I mean very sporadically. Like once every 6 months for a while. Sometimes I'd go 2-3 years without one. And each time, I'd get an episode around 10 in the morning, knowing that I'd have several throughout the day, but then that would be it. Just that one day. The next day I'd be fine, and nothing again for a year or so. But in 2008, I finally found success when I Googled the deja-vu symptoms, and came across this young English lady on RUclips, describing her auras. It felt so good to finally know what I was experiencing! So I was ready for the next one. At least I knew what they were.
But as soon as I found out what they were, I stopped having them. I was a bit disappointed. There were a few times that I'd feel like two seconds of the onset of an episode, and I felt that I was in control, and then it stopped. But that couldn't be it. You can't just control them. Anyway, everything was going along fine until sometime in early 2019. It was the latest in the day that I'd ever had a first episode, and they were shorter and quicker than ever before. I had about a dozen of them back-to-back. About 5-10 minutes break in between. It was a mixture of emotions. Welcoming and frightening at the same time.
And nothing since then. Hopefully none ever again. But just wondering if anyone else understands what I'm talking about, when I reference the sensation of an elevator ride?
Dori Sibley I’ve heard a lot of descriptions that are similar to the “elevator ride or roller coaster drop”. People have actually used those words. Really interesting how they have come and gone for you. I hope they stop now. Wishing you the best
Exactly my symptoms. Like, why would I look forward to the next episode?!
Wow thank you for posting this. I was just diagnosed with epilepsy at 22 when I had my first grand mal, and since then realized I have been having partial seizures for years. I was being treated for anixety and panic attacks that we djdnt realize were seizures. I have been trying to deal with the memory loss as you are too. Its very hard to not remember your life at 23.... I have the deja vu seizures as well, and I cant believe I had no clue that is what was happening. There must be so many more people that dont know what is happening to them. Thank you for sharing your story. I feel less alone
Brittany Young I’m so glad you found out what is happening! I spent 14 years not knowing I was having partial seizures because I got diagnosed with tonic clonic seizures at 12, but no one EVER said anything that would have remotely helped me realize that what I experienced were seizures. I felt crazy, and so alone and didn’t tell anyone. I don’t want other people to deal with that. I really hope things get better for you! Glad I could help a little. It took me years, but now I have no grand mal seizures and hardly any partial seizures because of meds. My quality of life is sooo much better 💜
Here is my video on memory. It helped me a lot to feel like I understand what’s going on and why I can’t remember things.
ruclips.net/video/tYF0ip-wTio/видео.html
Hi guys, I'm trying to understand all of this. As my husband had a seizure for the first time, we are seeing a neurologist soon. And he might have already been living with focal aware seizures for a while now. Thank you for posting your experience!
I had my first grand mal seizure a couple weeks ago, at the mall and a whole crowd gathered around to look. That morning I had that deja vu feeling you described to the point where it was making me dry heave. I kept saying "I lived this day before." And thought something bad was going to happen. Since then I've had what I think was a partial seizure. I really hate that deja vu feeling, but I feel better knowing I'm not alone. Thanks for posting this!
You are so welcome! That is so rough! Having a tonic clonic seizure in public was devastating to me. I had my first one in my classroom in 6th grade. Another happened outside at school when I was 18. Ultimately I've learned that it doesn't matter and that people are just clueless. But it was hard to get there. I know that the deja vu feeling can be intense for me. I also tend to feel like something bad is happening. So, you are not alone. I hope you get good help and things improve. :)
Though small, the thing that makes these seizures so bad is that they are so frequent, and we have to live with them on a daily basis whereas other people don't. Some days are good days (0 or 1 seizure per day), others are bad days (up to 20 or maybe more seizures in the day). Just gotta "Plow through them": YOU SAID IT
I'm so grateful to have found your videos on this. I've been dealing with these strange deja vu feelings since about 2013/2014 and for the longest while, just chalked it up to anxiety (which I've struggled with since age three) but more and more recently, I've been noticing a significant difference between the two feelings and have started researching TLE with the suspicion that that's what's up. For me, I just get sucker punched with these insane spells of sensation out of nowhere (for some reason almost always while I'm brushing my teeth in the morning, for some reason) that start with these really intense visions of strange things I struggle to describe as if they were parts of a dream I never remember having but they feel so inexplicably familiar, along with jamais vu about the world around me, and then my body reacts with heavy breathing and a lump in my throat and I get kind of dizzy and get this sensation in the back of my throat like I'm about to gag and this tingly feeling in my lower abdomen and these chills or shivers that are nowhere near the same as the trembles I get with a typical panic attack. It only lasts for a few minutes (I had one this morning that I timed while I jotted everything I was feeling down onto a memo pad on my phone for reference, and it clocked in at four minutes long) and then am relatively fine but feel super effed up for the rest of the day kind of like I'm in this haze and sleepy. It's terrifying and I hate it, but I feel grateful to have some semblance of an understanding as to what might be up, and I recently asked my doctor about it and he said he was going to consult some specialists in the office for me to see what he could find out and I guess I'll go from there in working toward an actual diagnosis, but I'm so grateful to have found your videos talking about this because they've really helped me relate what I've been going through and provide some more insight and information on the topic so thank you so much for that. (This got really long, whoops, sorry x_x)
I'm so glad I could help. I know how awful it is to feel all alone in this. Seizures are very intense and scary to me. I really understand feeling hazy and sleepy. I usually feel like I just can't think at all after a seizure. Like my brain is not working. I hope that you can get some help with this. I know a lot of doctors will say it is just anxiety, and people themselves. But sometimes it's more than that. Either way, your experience is real and it's tough. Be well!
So strange that a lot of the time I have them when brushing my teeth too, or when getting in the shower which I’ve seen other people say about as well. Or in a certain area of my house. Maybe that’s a thing because I’ve seen other people say it!
I struggle with these, too, and have been for about 5-7 years. They have gotten worse and more regular over the last two years. They seem to come at the same time each month, always in the beginning and the middle of the month, so about every two weeks. I assumed they were hormonal but now I see men get them, too. First i get a wave in my stomach, almost like a quickness (similar to if you go down a slide or something) and then i get a little zoned out but can interact and speak fine, my motor skills are not effected. Then I get a strong whiff of something, it ranges between burning, floral and chemical, the scent varies each time, shortly after the smell comes on the deja vu sets in. For me my deja vu is a fear inducing experience. Whatever is going on in the background has happened before and it has a negative, scary association with it. Whether its a song playing in the background, a conversation I'm overhearing or even a conversation I'm having with someone. I get very scared, scoot away from any walls, desks, anything I'm around if possible and tend to move to the center of an empty space, although I'm always unsure of what I'm actually trying to move away from. After that, the whole feeling goes away as quickly as it came on, it usually comes and goes in 4 or so minutes.
Throughout one 24 hour period I will have anywhere from 1-15. These happen over a usually consecutive 2-4 days. Usually the the middle day(s) are the ones where I have the most occurrences (I call them auras). For example, last time I had 1 the first day, 3 the second day, 14 the next day and then 1 the last day. Afterward an aura I am exhausted and nauseated and sometimes have to throw up. The exhaustion lasts for the cluster of days they are happening, but the nausea is only right after an episode. The other strange side effect of this is that my sense of taste is affected on the second day until the last day of auras. Everything I eat tastes very sweet. So sweet that I can't eat more than just one bite. The only thing I can drink is water, and even that has a very small hint of sweetness.
Lauren' Noel Honestly that sounds really exhausting. I actually don’t know how many I was having in a day because before I got on one epilepsy med I had no idea they were seizures.But honestly for me the intensity of the déjà vu is one of the things that seemed so strange when I would tell people that I had déjà vu and they would say they had it and it was no big deal. Now I know that they are not talking about the same thing. I used to basically leave wherever I was and go for a “walk”-meaning get the hell out of wherever I was. It was so mind blowing because I had no idea why I was feeling like it was so scary and horrible and that something bad was gonna happen. I don’t know about the taste thing, I haven’t heard that before but neurology is pretty interesting. One time I was reading patient descriptions of temporal lobe epilepsy seizures and someone said it felt like a “feeling of impending doom”and that helped me to try to describe it to someone. You said that you get them regularly and thought they were connected to your hormones, my guess is that they are. If you look I just posted a video recently about catamenial epilepsy, which is when it is connected to your hormonal cycle. It can happen with any changes which could be around your period or around ovulation or both. I found that it’s helpful for me because mine are related to premenstrual time, to be aware of when that time is coming so that I can just be ready that knowing I’ll have more seizures than usual. But I’m sorry this is such a crazy illness to have and it’s so stressful sometimes and traumatizing I really hope that you can get a handle on it sometime I am Basically having no seizures now because I have tried so many meds and have gotten it under control and my quality of life is so much better. I wish you the best
I too suffer from partial seizures. Both where I’m aware of what’s going on and seizures where I would totally black out for minutes and not remember anything that happened during that period. I’ve had my wife, family, and coworkers witness what I go through during a partial seizure. Everything from lip smacking, talking out of my ass, my eyes pupils getting huge, and my scariest ones where I would remember being in one area like a certain room for example and then snapping out of a seizure and being in a totally different room or even end up outside and having no memory of how I got there. My life has definitely spiraled down since being diagnosed with epilepsy. My driver’s license is suspended so I’m getting dropped off and picked up from work every day. 7 months later after my epilepsy diagnosis, I was diagnosed with anxiety and depression so now I have a trifecta of mental illnesses. I’ve gotten the anxiety and depression under control with meds but the seizures are a pain in ass to even decreases the amount I would go through every week. I’m currently on Lamotrigine 150mg and I’m taking those twice daily but they don’t seem to be working. It’s also a hassle finding the right neurologist that wants to help their patients and get their seizures under control instead of taking advantage of their insurance money. I hope everyone who suffers from this mental illness gets the right medical attention and gets their life back on track. Good luck!
Hi! Wow, that is a very scary history. I get that your life is going haywire. I didn't have my license for 7 years. But once I got on meds that worked, I got my license back. Wanted to mention-this is not a mental illness. Many of us have mental illness as well such as anxiety and depression. But Epilepsy is a neurological disease. It has taken many years for me to get my mental health and my seizures managed well. I tried 12 Epilepsy meds. I had to go to multiple neurologists, because some are not helpful and can be dismissive. I had one say it all was not real. I have tonic clonic seizures as well that were witnessed for 10 years, but he said I couldn't prove it because I had no video. I almost went off my meds in the Epilepsy Monitoring unit so that it would induce a seizure and be on video. But it didn't happen and I am very glad. But partial seizures can be just as scary. So, advocate for yourself. I take a lot more Lamotrigine, so there are other options. There are other meds to try. I'm so glad I kept trying. I even got a VNS. But ultimately, the 2 meds I am on are working. It's such a trial and error because everyone is so different. Take care!
Thank you for taking the time to read my story. I really appreciate all the advice you’ve mentioned and I’m looking forward to the day that I find the right medications that will stabilize my seizures and finally get my life situated. I also forgot to mention that my seizures are weird almost like they have a routine. I would get them every day for about a week straight and I would have none the following week. After that, I would just randomly get them every other day until that routine recycles again. Wow! I’m surprised it took you several years to find the right meds with the right dosage and the right doctor you felt comfortable with. I’m a very inpatient person so when it comes to these sort of situations, I want them to be over with instantly but I know I have to learn to be patient. Lamotrigine is only my second medication after taking Keppra which did absolutely nothing for me. Maybe I just need to increase the dosage but who knows. Like you said, it’s all about trial and error with these meds and I just gotta find the right one or two. Thanks for giving me some hope that one day I’ll be myself again and hopefully behind the wheel driving myself around without the worries of having a seizure on the road. Keep putting out these amazing videos and stay away from that Corona Virus.
Also, what you said about deja vu is my experience as well, I feel a very intense sense of having been in that exact moment before and it's overwhelming and disorienting, and then sometimes I start to sweat, my heart pounds, I get this insane fear that something awful is about to happen. I usually quietly push through it and breathe until it's over, and it's awful. It feels awful, and then it takes me hours to feel right again.
Deja vu was my most common focal aware seizure. It’s amazing how it can be so intense that it’s scary. That’s something that I never quite understood when I tried to talk to other people about déjà vu and they acted like it was no big deal. Obviously they were not having a seizure. After the deja vu I often got that same awful feeling, which someone described in something I read as a feeling of “impending doom”, which I think says it perfectly. It’s so bizarre how strange these are and yet how many of us can have the exact same experience or very close to it. Definitely hope someday we can get more descriptions out there of these seizures so that people can figure out their diagnosis much sooner. I was having tonic clonic seizures since I was 12, but I didn’t know that the other experiences I was having were seizures until it was 26. That being alone and the scary experiences and not being able to share it with anyone was hell. I’m so glad that you found my channel and I hope you don’t feel so alone and can find some comfort here.
This is completely what has been happening to me, mine generally starts with the deja vu and impending doom where I felt like I needed to get up and walk or run or pace the floor. I was previously describing it as like my brain felt like it was on repeat. It comes in waves of intensity, for about 5 to 8 minutes then when the waves of it start to slow down I get teeth chattering chills to the point I cannot get warm enough and my husband and family jack the heat all the way up and wrap me in blankets. Those chills make me shake all over and gradually about an hour, I fall asleep and I’m so exhausted. I’ve been a nurse for 22 years but I had no way of describing what I was experiencing. Thankful for you putting words to what has been happening to me. Tomorrow I finally see an Epilepsy specialist, praying I can get some answers to what has been going on. I even have issues with memory and finding the right word to say at times. I know I have IIH and migraines, but no stroke or aneurysms seen on my CT or MRI. Maybe an EEG will show what’s goin on.
Girl yes! 41 and just diagnosed. I have felt like a crazy person forever.
Thank you, I've been frantically looking around because I was terrified of all this, and your video helped me realize what I have. I've done research, and now I'm going to get it checked.
Inferno 7 I’m so glad I was able to help! Figuring out what’s going on can be good and scary. Ultimately, it gives you options for treatment, which is great. I hope you get some good help. Remember your experience is real. Not all doctors and even neurologists really understand Epilepsy or get what you are describing sometimes. Get a new doc if they don’t listen. 😁
@@arielonhealth thank you
Me too
This is the first personal account I have heard and it is practically the same as my daughter. I have been trying to find out whats causing all her strange symptoms for about 18 months. Doctors have had her down as anxiety but it just didn't feel right. She hears whispering, whistling and voices and feels like being tapped and watched. Shes been so scared, shes 15yrs old. When i show her this she will be so very relieved to know shes not alone. THANK YOU
caroline taylor this is voice to text so I hope you can understand. I am so glad that you came across my channel. Reading a book that had patient descriptions of the partial seizures from Temporal Lobe Epilepsy was how I figured out that what I was experiencing was seizures. I personally have tonic clinic seizures so I’ve been diagnosed with epilepsy from 12. But when I tried to explain the things that were happening that started around that time they just sounded weird and unfortunately in my family they were spiritual abuse so they said that it was a spiritual experience and caused by negative energy. But I know how it feels to have it Doctors not believe you, not really listen or take you seriously I just stopped telling anyone about them because I knew that people were going to say I was crazy. So I didn’t say anything about them for 14 years. And that was a living hell. I am just so glad that you are there for your daughter and you are advocating for what you feel is right. I always knew it wasn’t psychiatric. But like I said my family scared me and I didn’t know what it was so I didn’t even know where to start. When I was 28 I read that book and was able to get treatment and now I have almost no simple partial seizures or grand mal seizures. The whole experience was very Trumatic. I can tell you that almost everyone who comes to my channel has been diagnosed with anxiety first. I also have a video talking about depression and Epilepsy, How horrible it is when doctors don’t believe you, and the PTSD you can get from having seizures. You can also get PTSD from being miss treated and neglected by doctors. I just say that because I do have anxiety now and yet that’s not what my seizures are. Because it’s perfectly understandable that when you’re worried these are going to happen at any time, you’re anxious. Also, if you’re scared of them and you have one it will trigger a lot of anxiety. But that’s not the original thing. I wish you the best and I am so glad that you’re helping her figure this out it will really make the rest of her life so much better. You may end up needing more doctors that are not helpful I just keep trying. Also as much as you can learn and resource doctors will take you more seriously. But their egos get in the way and they don’t like it, but I still find that knowing the info means they can’t just dismiss me completely.
Thanks for your descriptions. I have complex partial and simple focal aware seizures and I just sat, watching your video, and nodding "Yes," through the whole thing. Very good explanation of something very hard to describe. Thanks and hang in there!
Thanks for your note!
Thank you for this. It helps reinforce what I suspect my son experiences. My 6yo was recently diagnosed with Occipital Lobe Focal Seizures (simple partial) but most of his symptoms tend to be what you've described and involve his temporal lobe. He's exhibited anxiety since infancy but it wasn't until he had some more obvious symptoms while sick (viral infection/covid?) that we realized he was having seizure activity. It's so obvious now the correlation between his anxiety (he goes into fight/flight/freeze very easily) and his seizure activity. I was shocked that his 48-hr home eeg showed frequent 20-30sec seizures because I was watching him closely and mostly it's hard to "see" his. As a mom I felt so guilty for not realizing earlier what was going on with him. I also had epilepsy (absence/tonic/clonic) in childhood and now have Non-epileptic Seizures (fyi, no-longer called Psychogenic).
Thanks for letting me know about the psychogenic term. I think that there’s so much going on in the brain that things like fear and anxiety can be directly connected to your seizures. That’s my experience. It may look like someone has Random anxiety, but actually it’s from seizures. I can only imagine how upsetting this must be. But know that you’re a good mom that you’re getting it figured out and trying very hard to make things better.
You have described so many of my seizures. I never heard of having an out there feeling, or being completely confused . Amazing! Several others as well I have temporal and photosensitivity and partial . Thanks for your explanations
So glad it was helpful. It's amazing how much doctor's don't tell us and we need to share with each other or we don't know.
Ariel , It's ok to take a breath ! , I know all this is really needing to be said and it's urgent . . . But - PLEASE ?!?!?!?! just try to relax a little bit . . . My main triggers are #1 Stress , #2 Lack of sleep & Above all .....
Feeling safe ( or not ) in your surroundings . . . . . Having really good friends that you can count on
( this includes ) Family that are or might not be blood related . . . You get the idea .
YOU are not the disease --- YOU are SO MUCH MORE THAN THAT !!!
Seized on and off for over an hour last night. Did not lose consciousness. Felt like I was stuck in my mind watching the world happen. Deja vu. Even told my husband this jist happened. Told paramedics that too. I had forgotten my seizure med. I thought that I had died. I was repeating words and phrases but in my mind I was repeating words such as walk to bring myself to the "front" to have control. Paramedics said I was either schizophrenic or on meth....
Wow that sounds really awful. Sometimes if you are withdrawing from medication you can have even more seizures than you normally would and sometimes more intense. I’m sorry that it sounds like nobody would believe you.
i very recently began experiencing deja-vu like seizures. it’s so relieving to listen to you describe exactly what i experienced. thank you so much for sharing.
That’s exactly how I felt when I first read about them. I finally felt like I was not alone and things made sense for once. Definitely a huge relief.
Ah you are the first person to explain what exactly what I tell people or the paramedics. I tell them my brain doesn’t feel right they just think I’m crazy
Divine Feminine Tarot I’m sorry. I always felt like I couldn’t tell people because I thought it would sound crazy because it’s so hard to explain. But you’re not crazy, and keeping that inside is also awful. I hope maybe you can get some help, so that people will take you seriously. It really is a big deal. Just remember, your experience is real, and it’s important to feel safe. Have you ever talked to a neurologist?
Yes I’ve seen a few I have a dysautonomic neuro he didn’t think I was having seizure but my therapist did. He ordered an eeg and the neurologist I have at my home town did it and said I had spiking and slowing in temporal lobe. Then I was trying to get into an new neuro guy was a jackass so now I’m waiting to see an epileptic specialist.
I think that's great that you will see an Epileptologist. I have had such jerk neurologists/epileptologists before. I'm glad you keep advocating to get to the bottom of it. I hope you can get some help. I have Dysautonamia too, but am going to see a Cardio who deals with it. Mostly POTS symptoms.
ariel on health have you looked into EDS and CSF leaks ? I have bad POTS and Inappropriate Sinus Tachycardia
Divine Feminine Tarot I have looked into EDS. I am on the hypermobility spectrum, but can’t find a doctor who will work with it. I haven’t looked into CSF leaks. I have ME/CFS which often is comorbid with POTS. It’s difficult to have illnesses that are more rare to find good doctors. Took me the last year to get to this cardiologist. The first one I saw just said she doesn’t deal with this-when I gave her the info on the testing. But that’s ok, she had the wrong words in POTS and thought it was orthostatic hypotension, so I want someone who at least knows a little more than that.
I can't begin to.tell you how grateful I am that you have shared your experiences with us. I was diagnosed with epilepsy in 2019 but have struggled to get proper management/diagnosis until recently. Simple/complex partial seizures due to mesial Temporal sclerosis and I've still been in denial these past 3 years because I was always...confused by my symptoms and how ppl would question me on what happened like I should have the answers and I didn't. I'm still in the process of getting to understand exactly what is going on in my brain so I don't have to just call myself crazy or emotional or disconnected at times so before I ramble any longer thank you so much for making me not feel crazy anymore and get a better idea of how to move forward myself. Thank you so much 🙏
have simple focal awareness epilepsy I am on Lamotrigine. I have migraine so bad it drained me and exhausted me. . I was aware of seizures. I have Daveja, thrown up, I saw patterns. I guess I been having them all a long. I have generalized tonic-clonic epilepsy as infant and childhood. I have 3 grand mal seizures after birth and throughout childhood I would sleep for 3 days. My mother have placenta abruption I have loss oxygen and aspiration meconium my kidneys shut down. I was put on phenobarbital afterwards until 5 than tegretol. What I describe is what I feel thank you
It is hard to have seizures and I’m sorry you’ve had to go through so much. I hope things keep getting better.
I finally found what it is
Me too took 35 years but finally know what's going on with me now
i believe ihad seizures back in mar 2021. I could hear for a few seconds and I could talk, but most of the time I was not able to and my arms/legs were shaking and i could hear and think for a short time.
So amazing to hear someone explain exactly what happens to me- especially the Dejavu... never had the smells like mnaik said but I’ve heard about them a lot.
im 36 and have had TLE from birth (rare case of identified origin) but i am admittedly only now coming to terms with this debilitating disease. Ariel...you have helped me so, so much. Listening to another person speak what i have been living is revolutionary. No one has ever explained to me about these seizures and how very scary and real they are...even if no one else knows they are happening! Im in the process of accepting treatment again, part of that treatment will be a therapist and a support group. Thank you Ariel...you've been more help and support than 36 years of Dr.s and meds :) Laura Leigh
leafofmind I can’t thank you enough for those kind words. I created this channel for that exact reason. I felt so alone with what I was experiencing and didn’t get help with Dx with the partial seizures until 14 years after they started. And the way I figured it out was reading “The Epilepsy Patient and Family Guide” and reading other patients descriptions. I had never heard anyone explain the same thing I was going through until then. I had felt so traumatized and I couldn’t explain it. I really thought everyone would think I was crazy if I did. So glad you can get help and treatment! I see a therapist and it has really helped with dealing with the trauma of all those years. I hope things go well! Blessings!!
ariel on health
Thank you :) I went ahead and ordered the book! My appointment with the neurologist is tomorrow. Im so grateful that i can go in confidently now and not in fear. I even opened up to my family about every scary epilepsy "secret" (who wants to admit they hallucinate lol) i was keeping from them and not only was there a major "Aha" moment...but they are all very supportive :) My 16 year old has been amazing! Thank you, thank you for being such an advocate....you truly have helped a lot of people...me and my family included. Very grateful :)
leafofmind wow. I am so grateful you are able to acknowledge your experience, and be able to share it. You have seriously made my day and people like you make this whole channel worthwhile. I am so glad you are getting help. I hope it goes really well. I always say, remember your experience is real, no matter what anyone says. You know you best and can trust yourself. Really, I am so glad you told me this because it makes me know my difficult experience can help others and that is exactly why I share. 😁 thank you. If you want, update me sometime. Blessings!
All I can is wow. This made me cry. I used to have these experiences as a child, and simply thought of them as Night Terrors, as mine would mainly occur at night. It’s only in the last few weeks, someone mentioned Epilepsy that I began to wonder and look into it and your video is the only one that’s ever really explained it. Thank you so much.
Chelsea Skiles I am so so glad you found this and I was able to help. I used to have 90% of my tonic clonic seizures in my sleep. The change in brain wave states is actually a pretty common time to have seizures. It is very traumatic to not know what is going on when you have a partial/focal seizure. I didn’t know for 14 years and was so scared to tell anyone because i thought it sounded so strange they would think I was crazy. Do you still have any?
Thank you so much for posting this! I struggled with seizures, undiagnosed, for almost 20 years and we seem to have a lot of the same experiences. I’d love to chat with you some more. I don’t actually know anyone with epilepsy and have never been able to share experiences with anyone who might understand. It can be so impossible to describe sometimes. I’d love to have you as a friend on Facebook! ☺️ x
I’ve been thinking about that a lot. The fact that we don’t have words or ways to really convey our experience because we have no context or anything really to compare it to when we talk to people and doctors makes the diagnosis process a big problem. I decided I think Epilepsy patients should write a “seizure dictionary”, so new patients can read it and say-“that’s what I’m trying to say!” Glad to hear the videos helped and you don’t feel so alone. I don’t usually write my contact info here but definitely look at things like “The Epilepsy Foundation”, and they have groups in some cities, lots of good info, and conferences that I found extremely empowering. Having community is very important. Blessings! 😁
So true! I never got told anything about what forms seizures come in by any doctors. I’m still learning about what this disorder means to me by doing my own research and just living my life and taking the experiences as they come. I’ve been feeling extremely mortal lately after a few nasty falls and bumps to the head and am definitely looking to connect with others who share this experience. I’ll definitely follow your suggestion but I’m also ok to put my contact info here incase you wish to have a nose. ☺️ Sarah Birch (Duggy) No pressure whatsoever and thank you for replying. You seem like a genuine and lovely person x
I’ve been thinking about what you said about a “seizure dictionary” and I think that’s an amazing idea. I’m contemplating starting a Facebook group for people to post their crazy epilepsy experiences. I’d definitely be interested in learning more about what others go through, as well as clarifying my own experiences. I’m not always sure whether what I’m feeling is epilepsy-related! 🤦♀️
craftycowsarah I’ll get back to you soon because I’d like to look at that.
Hi Sarah, I looked for you on FB, but there are multiples. Are there any more specifics you can tell me here or in some way?
I am currently waiting to see a neurologist at this time. My symptoms are varied sometimes a mild déjà vu type sensation, feeling hot and cold at the same time. A sensation of tingling all over my body. Mild dizzy feelings, feeling sick but not actually being sick. Strange taste in my mouth. These attacks can take place when I am up and about and also more common at night I can wake up with the above feelings. After an event, I have a loss of appetite and feel tired and often have a headache. I have had these feelings for about two years and just recently I have had an MRI brain scan and now waiting on the results.
Spirit76 I’m glad you are getting help for it. The MRI won’t necessarily show anything. Many people have idiopathic seizures. But, they are very real. They sometimes show on an EEG. But for me, unless I am actively having a seizure, there is no seizure activity on an EEG. I say all that because it’s important to know that your experience is valid and real even if the tests don’t show anything. Some docs are dismissive and jerks if they don’t have tests with blatant results. I hope you get the help you need! Having fewer seizures had made my life so much better! But I had to try many meds and see different docs to get the help I needed. I wish you the best.
Finding this video and hearing this is life changing for me. I never knew what the hell I was experiencing. THANK YOU so much.
So glad! I hope you get the proper diagnosis. I know how hard it was not to know what was going on. You are not alone. Let me know if you get some help if you want.
I've had all of this since I was about 10 and I only learned this year (I'm 37 now) that it's epilepsy and temporal lobe seizures. earlier this year I started having tc seizures at night along with burning smells that prompted me to go to the hospital where I was admitted for tests and after all these years of feeling crazy, I know what's really happening now. I'm on medication that helps but doesn't fully control my partial seizures, and I'm still trying to piece everything together. Thanks for the video, your experiences have helped me understand mine a little better. 💜
Miss Riley I’m so glad you finally figured out what was happening! Unfortunately so many people go through this where they don’t know they are having seizures for many years and feel alone and crazy. You’re not alone and I hope that you can keep trying meds because you might be able to find some that do control your seizures. I’m glad that you found my channel and it’s helpful and be in touch.
Thanks for sharing this. I’ve been diagnosed with epilepsy recently, I didn’t knew that this kind of seizures even existed and now everything makes sense. I thought it was only bad anxiety or other similar things that I had to mentally work to make them go away and get better, I tried and tried to manage this situations but anything seemed to be enough so I always ended up feeling defeated. Having this diagnosis is a relief for me, I hope that the medication that I’m about to take helps me too.
I’m glad you finally figured out what was going on. I had the same experience, where I was trying so hard to change things mentally and it absolutely didn’t work. I have tried quite a few meds, so don’t give up hope if the first one doesn’t work well. Basically the only solution is epilepsy meds, and I have to say my quality-of-life is so much better than it used to be now that I take them. Wishing you the best.
Yes! More real than real life is so true. I get these. Very intense deja vu of a dream, dream realm, parallel universe....something of this sense. Though when it's over I can't remember what I was thinking of. I remember it happening and I'm conscious of my surroundings. So frustrating when it's undiagnosed though.
illustrationdresser It’s really hard when it’s undiagnosed. I hope you can get some help if you need it. Wish you the best.
I've often used the term "parallel universe" when I talk about the auras and deja-vu experiences as well. Who is to say they're not related?
I started having my simple partial seizures at 10. They are in my temporal lobe, and they are deja vu seizures. As a 10year old, I had no clue how to explain this to anyone. I would get really nauseated, then extreme deja vu (with like “video”playing over reality) and extreme anxiety. As a child I was convinced I was psychic and “fighting” it (I read A LOT). I tried to tell people something was wrong, but I was accused of being a hypochondriac because all I could explain was my stomach was upset (and it was that way for a long time) and the school nurse would act like I was trying to just get out of class all the time... I got labeled the weird kid. So I didn’t talk about them to anyone. I had at least two a month until I was first married at 22 and I told my husband about them (I finally could explain them), but still had no clue what they were. About 3 years ago (I’m now 36) I started Wellbutrin which was my “miracle”drug for depression, anxiety, and ADHD... until suddenly I was having these deja vu episodes weekly, sometimes 7-8times a day. It finally occured to me to look them up and it said they could be seizures. I didn’t believe it, until one day I had one in my therapist office and had to explain it all to me. That was this past June. So now, after 26 years or exactly what you described, I’ve got these under control...
jessmerrick So glad to hear you finally got them figured out! I had a very similar situation. It took me 14 years to know that what I was experiencing were seizures. I started having tonic clonic seizures at 12 and those are more obvious, but never knew what the other things were. My parents said it was “energy” or that I was psychic when I tried to explain it to them. So I stopped telling people about them. They got much worse at times and I didn’t know what to do. Who do you tell this stuff to? I thought people would just think I was crazy. So, it is such a relief to have them stopped by my meds. So grateful for to have this knowledge.
ariel on health I worry about my kids with them too. My daughter tells me all the time she has stomach aches and I’ve read there can be some genetic components (plus she’s had two concussions already). I love your channel and am so grateful you have taken so much time to sit down and talk about all of this!
I know how you feel. I had a traumatic brain injury mostly of my temporal lobe when I was about 10 months old. Literally up to the age of 37 yrs old I thought I had no side effects from my brain injury, other than a long scar on my scalp that my hair covers perfectly. My whole life I had crazy intense dejavu. Whenever I would describe it to people, they would say that they’ve had dejavu before too. Two weeks before I had a grand mal seizure I told my boyfriend something was wrong with my brain, I really couldn’t put into words what it was, because I didn’t know that dejavu was a symptom of epilepsy. I’ve had two EEGs a CT and an MRI since and a sleep study. My neurologist diagnosed me with TLE, sharp spikes on an EEG. Sometimes it takes half a lifetime to figure it all out. 750mg Keppra has stopped almost all of my partial seizures and I haven’t had a grand mal since.
Wow, that sounds scary. I know how people just ignored the deja vu. Anyone I told said they had it too. But, it's much more intense. So glad it's stopped. I am so grateful to have very few as well. My quality of life is so much better.
I have those seizures when I feel that I'm daydreaming and everything feels more real. I don't feel any smells I feel a huge adrenaline wave in my stomach and some stuff in my head that is the same kind of memorie or a dream that tell the same story and the seizure doesn't end till the story ends, I know what comes after what, I even can tell what is "going to happen" but it's really difficult for me to talk while having it. I can tell the whole story when it starts, although when it finishes I always forget what I was thinking about. I just remember some visual things that I was visualizing in my mind while having a seizure. I usually freeze and close my eyes just so I could speed up the "story line" of the seizure. Before having a seizure I know that it's coming, I think that's called aura, so when I feel that I start looking around or talking so it wouldn't start and usually it helps ( I just distract my mind ). Per 10 years I fainted 4 times and I had hundreds of those simple seizures. My mum and doctors didn't believed me at first so I had strong depression because I felt alone and didn't what's happening to me.
It is so hard when people don't believe you and when you don't know what's happening. I had both of those happen and it really caused alot of depression and anxiety for me as well. I hope that things keep improving. Some of those seizures sound like the "deja vu" and automomic seizures. I hope you get them under control. Be well.
Laura, I get the same, with knowing what is going to happen next, and if people are around, knowing exactly what the dialogue is about to be, word for word. But even though totally conscious, it's like I'm in a trance, so I can't mutter the words before they do, just to let them know I know what they're going to say.
I love it. It is exciting. I never bother to explain it you cannot explain what is colour red to a colour blind person.
But it is cool. I take meaning out of it like indians used to ,triggering similar experience with poisons and drugs.
We are real werewolves the folklore of them is originated from that too. My own theory coming from parallels between people like us and stories of werewolves. Great stuff.
I had other seizures too. Been deaf for 4 years because I got facial seizures that gave me about 20 sentence a day to say and then my facial muscles began to jerk cutting words off. That scared everyone away from me,so that had its upside too. :)
Puberty was the worst! A very very confusing time in my life. Your videos really help.
Kimberly Smith I’m so glad it helps, makes my day to know that. 😄
Deju vu happened to me alot in middle school and early years of highschool
Tiff Parsons When it happened to me, it was very intense. Really vivid and frightening because it was so sudden and seemed so real. I didn’t know why it was happening, that made it harder. I hope things are going better now. 😁
Same. Younger people tend to experience the most intense déjà-vu - mine lasted about 20 seconds and would literally just stop me in my tracks. I would almost disconnect from the people around me in shock and awe. Many times I’ve stopped mid-sentence while talking to someone, look around in confusion and only be able to utter, “I’m having the craziest déjà-vu of my life” and never quite understood when people would say, “maybe you’ve been here before.” To me it was a complete shift in consciousness and that kind of explanation seemed so trivial. I’m not epileptic but I’ve had three seizures in my life, we think due to medications.
I’ve been reading a lot of spirituality and philosophy and physics concepts about consciousness. One of the more interesting proposals is that we may be connecting with our higher spirit or to another spiritual counterpart who is experiencing the same déjà-vu in a different galaxy or universe. It’s so batshit to think about but if you believe in “souls” (I’m unsure at this point) I find it fascinating to read the theories on how it interacts with your physical body and especially how our brains perceive it. I know this likely sounds absolutely insane but it’s at least fun to think about. I think déjà-vu and seizures could have a much deeper explanation than just faulty wiring or an overactive brain. Just my thoughts🤓
I am 30 years old and have been experiencing that déjà vu feeling since I was 14 years old followed by severe nausea and dizziness, sweating, heart pounding, head pounding just the most awful feeling in the world and I can always feel it coming on and after wards am just exhausted and I never knew how to explain it or if there was a way to explain it other than I must be crazy. The more that I’m looking this the more it makes sense. I have all the symptoms including the deja vu aura thing. Which is the worst feeling in the world I dread it because I know how awful I’m going to feel very very shortly plus it’s just a very odd and uncomfortable feeling. Also I have had rhythmic contractions or twitching in my face and in my fingers on my right side. involuntary weird head turning movement that I’ve done since I was a baby and neither me or my family have ever known why. The more I read into it the more I think that this is a very real possibility to explain all of these things that I just thought I was crazy but I don’t really know where to start because just calling around today and trying to find a primary care doctor and telling a nurse these symptoms. And answering a zillion questions about dizziness and things like that. It was an obvious just change in the way that that nurse talk to me like it change in his tone towards the end of the conversation and I feel he probably thinks that I am either dramatic or maybe a hypochondriac or just reading too much into it. But I never thought in 1 million years that there might be a legitimate reason for what is wrong with me and I know that most people are gonna think I’m crazy I have thought I was crazy for such a long time but now I think I might not be. And to hear other people say these things that I thought it could only possibly be me... The last 16 years I thought it was only me I never knew that there were other people out there going through this. I guess I just need some advice from somebody who is experiencing it how Can I get a doctor to listen to me about this and take me seriously and not brush it off and say it’s or stress or anxiety or me overthinking? Any advice from anyone going through it or who has gone through it would be deeply appreciated because For so many years I just never thought that there could possibly be an explanation and now to think that there might be is almost unbelievable please any advice at all and I would be very grateful
I have lots of thoughts on ways to talk to a doctor and finding the right person. You will ultimately need to see a neurologist. An Epileptologist possibly. They are a neurologist who specializes in Epilepsy. The descriptions of these experiences can sound very odd to people who have no knowledge of it. I would not recommend explaining to a nurse your issues. If you don't already have a primary care, it's good to get one in general in case you have any type of health problems. You can find someone and just say you want to" establish care" with someone to be your "primary care practitioner". No need to say anything to anyone until you see your doctor.
When you do see them, it's important to read up and figure out how to describe what is going on in a way that sounds like it may fit these categories. Then you get a referral from them to a neurologist. Ultimately, the thing that will work is that once you believe that you are not crazy (which you are not regardless of whether these are seizures or not), you will be able to confidently share to a doctor and then they will listen. It took multiple neurologists to find one that was helpful for me, so it is a whole process.
Main thing I recommend- Remember your experience is real. No matter what anyone says, whether it is psychiatric or epilepsy, it is real, it is hard, and you need support to deal with it. When you start with that, you can make things happen. I am happy to share more ideas. I know it can be hard after many years of not understanding and doubting yourself, but you are dealing with something that you need to treat, and things like non-epileptic seizures have treatments as well. I'm not saying you have those, I am just saying that no matter what is going on, you're not crazy and remember-"YOUR EXPERIENCE IS REAL, VALID AND IMPORTANT" and don't let anyone tell you otherwise. Hope that helps. Be in touch if you want more ideas as you start the process, because it is about being strategic when you have an "unusual", difficult to explain, confusing illness. I have multiple and have learned ways to get help. You can too!
It took me 14 years to understand that what I was experiencing was seizures, so I know the trauma that goes along with feeling like you are crazy, but I can tell you that you are not. It took many meds to find the right ones, but now I have almost no seizures and my quality of life is so much better and I am so grateful.
I can relate and share the same experiences and feelings of thinking that everyone just thinks I'm crazy or over dramatic or a hypochondriac e.t.c and that's so frustrating and a helpless hopeless feeling . It taken 35 years to get answers for me. But we'll all get thru this. God is with us . He brings peace.
Mine is simply I feel a slightly kind of weakness like a feeling of very sleepy or weak , (and Does not feel BAD ) and then I kind of extremely relax, close my eyes I can feel very very chill as a feeling of want to take a quick nap LOL , During all this.. I heard the voice of a fairy and she always say the same thing... and a Deja Vu with all of this at the same time... and then after about 30 more seconds everything is gone , and I can just keep on as if it never happened .... only happen for about 3 days about 5 times or 3 a day.. and only every one or 2 months , so I experience absolutely none of this for months and then again it happen after a few months. Now I honestly don't mind this at all, I don't care for it ... I was just curious looking info about it to see if is actually something really bad that I should worry.. I'm very surprise that many people also experience this similar things
Neo J. Ssk I’m so glad your experience is not horrible. Seizures are pretty bizarre and there are so many different types. So interesting.
I have that kind of Deja vue!! I HATE calling it that because It’s not like I feel like I’ve been in a similar situation. It’s “I’ve been in this EXACT situation before.” Even upcoming events I’ll think of are a part of the Deja vue, but how could I have such a thing happen previously when upcoming events are new? Then I panic after.
Oddly, I came across this looking up potentially focal seizures for my baby.
Your description is so right on. It’s the exact same situation, and it makes me feel freaked out too. I wish you the best.
3 years ago I woke up in the middle of the night with deja vu, weird smells, terrible fear, strange thoughts or memories, feeling of waves or a rollercoaster then it would crash only to start again a few minutes later. That morning I think I fainted twice in bed. By evening they had slowed down and I almost was too embarrassed to tell my husband. I was standing in the kitchen describing them when I said,” Here one comes again.” I woke up on the floor. I had fainted. My husband said my eyes were staring up and to the side and I just fell hard. After that day I was fine but every few months I have them but of much less severity but bad enough to put me in bed for the day. The feeling of fear...that is what I dread about these episodes.
I’m glad you told your husband and I really hope that you were able to get some help with this because it’s dangerous to be fainting and falling down. I know what you’re talking about with that feeling. It’s amazing that your brain can cause that from its own misfiring. I think I’ve never felt that feeling of terrifying fear or impending doom that I experience in my seizures in most of my life and I’m very glad. I wish you the best.
What kind of ''phantom smells'' do you get? I got a TERRIBLE smell of plaque, completely disgusting and overwhelming, and none of the other 4 people around me smelled it! Really freaked me out.
AzBboy I personally don’t get smells, but many people do and they can be varied. The most common I have heard is a burnt smell, but I believe any smell can happen.
I totally get that it's hard to put these into words but I have to say, this is an excellent description and something I find very helpful in understanding / describing my own experience.
In particular, you do a great job of describing the difference between "normal" deja vu and the sort that happens in a seizure. For me I describe it a little differently but in the end I think it's essentially the same - I feel the usual "this has all happened before" sense, but then I get this extremely extremely uncomfortable feeling like I know what is going to happen next but can't quite put my finger on it. Incidentally, the few times I've tried to say something, I often can't speak at this particular moment. Even at the time I know I don't *actually* know what's about to happen, but I can't shake the feeling, and something about it does create a panicky feeling. It's interesting how these things manifest.
Again, thank you, and I wish you all the best.
I really appreciate you saying this. It's always great to know when my videos are helping people. I get the thing about feeling like you know what is going to happen. I get that too, and it also freaks me out. The feeling seems so real, that's what really feels scary for me. Be well.
Ive been trying to figure out for years whats wrong with my daughter. She is 15 . she always will get the deja vu feeling is exactly how she explains it and it gets her nauseous and a weird taste in her mouth.. doctors for years send us to g.i for stomach issues and this Thursday the 26th she had a actual seizure.. it all ties in now .. we are waiting on a appointment with neurologist now
I believe I've been experiencing Simple Partial Seizures (self diagnosed). I'm 54 years old and never had a seizure. They started about 8-9 months ago. It starts off with a really weird feeling that I can't put into words, then I have a flashback type memory of a random dream then I get this bizarre surge throughout my entire body for a few seconds and then it goes away. This all lasts maybe 15 to 30 seconds. It's always the same dream flashing back but once the episode is over I can't remember the dream. I've had maybe about 6 episodes since they started. I'm in complete control, I don't loose consciousness, my body doesn't experience any involuntary movements and I am fully aware. What scared the shit out of me and made me look into this is that the last episode that I had two days ago occurred while I was driving to work. My driving did not become impaired what so ever but it scared the crap out of me. I'm terrified to go to the doctors for fear of loosing my drivers license. Any advise?
Flavia DePasquale I understand how scary they can be. It’s so strange to have these weird experiences and when I didn’t know what they were it was terrible. The fear of losing your license is real. I’ll be honest I have multiple times. I would say think about if you can talk to a doctor and weigh the importance of it with how much you need to figure it out. My doctors have been much more concerned when I had Tonic Clonic seizures than now. Sometimes they don’t take your license away, they just advise you not to drive.
I was diagnosed a few years ago with partial seizures. It is my understanding that they won’t let u drive only if you have had a full seizure.
I am so glad I came across your video! Thank you for sharing what you've been through with partial seizures - I believe I have been experiencing some of the same symptoms relating to confusion, deja vu as well but I am only new to realizing that they're actually seizures. About 2 weeks ago, I underwent a full on grand mal seizure - woke up in the ambulance and had to get some mri/catscan tests run. Now I have never before in my life went thru that severe of a seizure. So far, I will be seeing a neurologist in a few weeks to further analyze what may have motivated the seizure; however, my primary doc already prescribed me with Keppra, which I have yet to start taking. I'm a little nervous and would prefer to get the neurologist's suggestion on the proper medication.
Thanks again,
~ Des
Hi! I am so glad it helps! I know how it is not knowing that they are seizures. It was very confusing for me. I also have grand mal seizures when I am not on medication. I have tried 12 meds. bc some worked, some didn't, others had horrible side effects. Now I am on 2 that work to stop all my tonic clonic (grand mal) seizures and almost all of my simple partial seizures. I hope it goes smoothly for you. An epileptologist told me once that a drug is only efficacious if it stops your seizures AND is tolerable. I wish you such the best. I hope the neurology appt. is helpful. Sometimes, it's just hit or miss with trying meds so know that can happen. :)
I’m curious about how people feel physically during their seizures. I usually feel very nauseous and then extremely exhausted afterwards. And when I was younger, I used to experience terrible migraines from them.
Levi Rolten for me, it was sudden and usually intense. Feeling “out of it” and anxious during the experience with emotions and sensory stuff. Then, I would get totally confused and unable to think afterwards. I also get exhausted. Have to lie down for a couple of hours.
80% i end up being sick
yeah I get Nausea real bad too, sometimes migraines, but mostly nausea, exhaustion and anxiety.
Thank you soooo much for shedding some light on a really dark time. I’m totally in a similar situation and this is the only thing that’s really explaining it to me
Lauren Thurston I am soo glad you are finding them helpful. I hope you are finding some resources to help you out with it. Let me know if I can help.
okay there’s a huge chance i have seizures because this is EXACTLY what i experience but multiple times a day now. i either have epilepsy or i’m losing my mind. i’ll just be going on with my day and suddenly get EXTREME déjà vu and i freeze and feel INTENSE TERROR. it’s soo freaky! it’s so strong it feels so real and shocking it’s almost like i’ve dreamt the exact MOMENT to every detail but know i couldn’t have? or i get this RLLLY BAD FEELING like something very bad is going to happen. sometimes when i get the déjà vu and fear my lips almost act like i’m eating something when i’m not. or sometimes (this one is more rare like once every week or two) i get these things where it’s like i’m talking to someone ans then my eyes move away and lock on something like a daydream but i feel almost like i just fell asleep. it happens in seconds and it’s so scary, and i’ll feel like i’m asleep or falling asleep for a few seconds before i get this entire shock or shiver throughout my body and then i come back and feel anxious and confused. idk what this is. i’ve always had anxiefy and so when i tried speaking of the deja vu in the past my doctors said t might be anxiety, but now i have the déjà vu everyday and ik something isn’t normal because it’s so common, unles i have dreamt the entire 2020 and 2021 bc the déjà vu is so intense. the only thing is they normally last me a few seconds to 5 mins. could this still be seizures? i’m 18
Wow, that sounds really difficult and intense. What you described is very much like mine. I didn’t know what they were for 14 years and I felt like I was going crazy. They definitely could be seizures. Honestly, I have never heard of deja vu being anything other than something mild that people talked about. But mine was so intense I just couldn’t understand why no one understood that it was scary. So the other feelings you were talking about, I also experience after my déjà vu. I would have a really intense deja vu and then suddenly get this rush of adrenaline like a tiger was chasing me, and then I would have a sinking feeling like the world was going to end. So talking about intense terror is probably similar to the tiger moment. And when I finally read about someone else experiencing that bad feeling, they described it as a “feeling of impending doom” and to me that is perfect. The other things you talk about could totally be neurological also. The thing you described with the chewing, is usually called an automatism, and it’s also a seizure. Having these experiences come out of the blue is definitely one of the hallmarks of a seizure. Basically, especially with temporal lobe epilepsy, seizures can just be really odd. Also the amount of time you were talking about is also pretty average. After the seizure, the Post Ictal period, meaning after seizure, Can go on for a few hours. Being anxious and confused was exactly what I always felt. I literally felt like my brain was just fried and I could not think at all. It was like someone had disconnected my brain from my mind. I couldn’t make decisions and often got lost, because I would be in sort of a daze afterwards.I really hope you can see a neurologist. Because this would definitely be important to get help with. I have tried 12 meds, so don’t give up hope if the first one doesn’t work. Getting on meds that work really well has been the best decision for my quality-of-life for sure. Please let me know if you are able to get some help. There’s resources you can look up if you want to bring any information to your doctor. Some doctors only know the common symptoms of less common types of epilepsy, unless you see an epileptologist, it might be good to bring in some info that is clearly what you were describing. If you watch more of my videos you might get more words for descriptions. That was the thing that was hardest for me was trying to figure out how to explain it to a doctor. Hearing other peoples descriptions made it so I could more clearly tell them what was happening. There is a book called the Epilepsy patient and family guide, that I read it and had a lot of good info. If you need some help finding resources, don’t be afraid to ask I’m sure I can give you some links. I’m so grateful that my video could help you. Your story just sounds a lot like mine. I felt like I was in a living hell. I am just so grateful that I learned what they were. I hope you’re able to get some good help. Sending good vibes.
I've been wondering if my panic attacks (and by extension, panic disorder) are secondary to something like this. It's entirely possible that I'm just hoping there's something a little more... definitive, I guess, than a mental disorder going on. I get very spaced out and dizzy, sometimes it's hard to make words, and I often have spells where I just can't remember things. I know these are also very common symptoms of extreme anxiety (and a million other things), but I have two justifications for wondering.
1: I've never experienced the two big panic attack symptoms - the choking and heart attack sensations. I don't hyperventilate. In fact, I usually find myself breathing normally or sometimes catch myself holding each breath for a few seconds before taking the next one. My heartrate also doesn't increase *that much* - certainly never "races". No chest pain or anything. I know everyone experiences these things differently, but when roughly 9 out of 8 people complain about these symptoms and you don't get them, it raises questions
2: None of the SSRIs or antixylotics I've tried have done anything to help. Even the strong stuff only knocks the anxiety down. The other symptoms (particularly the dizziness and spaciness) remain. Furthermore, the severity of the symptoms doesn't seem to correlate with starting/stopping/changing doses.
Not to say I don't have anxiety attacks (or at least frequent but brief instances of debilitating anxiety), but I've always been extremely high strung. A worrier, as my mother says. I'm curious as to whether my panic attacks are in response to something else going on.
Sorry, just thinking out loud here
I think it's good to question things that seem more complex. Ultimately, we as patients know ourselves best. I also have anxiety and depression and I know that there is a difference. I thought for a long time my partial seizures must be psychiatric because I had never heard of any like this. I was diagnosed with Epilepsy bc of the tonic clonic seizures already.
I think one of the key things is exactly what you said. If all of those psych meds are not working, and you don't have the hallmark symptoms, then is it something else?
I did research and saw more neurologists. Once I started Epilepsy meds, it took quite awhile to find the right combination. I understand that it's not fun to have a psych diagnosis, but to me it sounds like you have real reasons to look into it more than just hoping it's not panic attacks.
Because stopping them is the goal, I think finding a neurologist who will really listen and look into what you say more is important. Not many are like that. That's my only caution. Doctors love to give a psych diagnosis when they don't know the answer. It happens a ton with other complicated illnesses too. That book I read really helped me. I'll post the link to my other videos I think will help. The amount of anxiety and trauma I have experienced from my seizures is huge. So, I can imagine the anxiety around it is real, but the thing that needs to be treated first is the seizures. They will only stop with seizure meds. My favorite thing to say to people is "Remember, your experience is real." whether it makes total sense or not. :)
PTSD and Epilepsy ruclips.net/video/TqVUQyfr6Ag/видео.html
Here is the book that helped me the most, ruclips.net/video/BIfWWtx5Oq8/видео.html
I don't know if you still use this account, but did you ever figure this out? I'm experiencing the same thing and am wondering if it could be seizures or it's anxiety.
Deja Vu seizures suck! They literally make you feel like you have early onset dementia. Have i watched this before? Haven't i done this before?
I find them really almost scary because it feels so real that it kinda trips me out.
I've had deja vu before alot in my teens especially when I was younger and when that happened my anxiety would skyrocket. mine is always like im repeating something over again or an event would happen and i think to myself this happened before and i think to myself am I going crazy.
Spike 1984 I found Deja Vu scary at first. I didn’t know I was having seizures. It felt to me like it had all happened before, so weird.
Spike 1984 I am the same way. I don’t think it any pills for what we have going on
I've been this way so long. Crazy panic fear. Mines in bed. Bad head pain and hard to recover. Thx
David Kellar it’s such a bummer you have to deal with this too. I wish you the best. Mine are pretty much controlled with medication now and I am so grateful. They are scary.
My simple partial seizures were also difficult for me to describe until I read about the Alice In Wonderland syndrome. I thought I had migraines...with "auras" until the EEG results came back... And then they found a tumor in my brain... Ugh. Thanks for your video!
I'm sorry to hear about the brain tumor. I really do think it's so hard to describe seizures, that a lot of people don't get diagnosed correctly, or if they do, it takes forever. Wish you the best
My doctor has diagnosed me with focal undetermined seizures and I'm pretty sure it's something like this. I have had deja vu since I was in about 6th grade and its just progressed and in September 2017 I had a tonic clonic seizure and they put me on medication. and now ive only had deja vu but I have memory problems and it makes me crazy.. I would love to not have deja vu anymore. I really hope I will be able to get either the right medication or the VNS.
Mallory Richardson Hi! I agree that having focal seizures is still hard and upsetting. I tried 12 meds before I got all my tonic clonic seizures and focal seizures almost completely under control. It is totally manageable now. I recommend trying until you find what works, if possible. I got a VNS, and had a pain reaction, so I am getting mine removed. Didn’t know it could do that, so wanted to let you know in case you are going to try it. I have multiple videos on my experience. I hope things improve for you. Wishing you the best!
Mallory Richardson Here is some info on Epilepsy and Memory. It can be from repeated seizures, or meds, or both. ruclips.net/video/tYF0ip-wTio/видео.html
Mallory Richardson Here is a video soon after mine was turned on. ruclips.net/video/QrSFs2oocIU/видео.html
Mallory Richardson One more video about my experience after my VNS was turned off. There are others too. ruclips.net/video/ar3oUUS1TJM/видео.html
I was misdiagnosed with PTSD after a car accident because my seizures increased and the dejavu was insane. I was having these since I was 6 and remember telling people I’m having dejavu but no one would listen to me until I seen a neurologist after the accident. I hate these partial seizures ugh I’m on the struggle bus today!
Melisa M I’m glad to hear it finally got worked out. That is so scary and hard to go through something like seizures alone and when no one understands. I would tell people about the deja vu and try to explain what was happening, but people would just tell me they have deja vu too. Not the same! It took 14 years to get my diagnosis of partial seizures. I always hope that by having this channel, someone will get diagnosed sooner. 😃 Wish you the best!
OHHH MY GOODNESS!!! I'm not crazy! I keep having this type of feeling and I would always describe it as deja vu x1000 and everyone just thought I had crazy bad deja vu... until I had a 'big' seizure and was in hospital and it all stopped for about a month and now they've started again. I don't know what to do because I feel like crying after every one because they are horrible and I just feel fuzzy afterwards. Thank you so much for this video x
Wow, that sounds intense. I went 14 years not knowing I was having them also. I was having tonic clonic (grand mal) or big seizures as you called them, but did not know I was also having the partial seizures. I just thought I must be crazy. It was hell. I understand how scary it is to feel like your brain is being messed with and you have no control over it. I really hate that feeling. I always say that I just "CAN'T THINK" afterward. It's more than confused etc. It's like my brain is just not working properly yet. Which makes sense neurologically. Epileptic seizures are rapid misfiring in the brain. Your brain gets overwhelmed and it takes awhile to get back to normal. I'm so glad you found this channel and can know you are not alone. I am now on 2 meds and almost all my seizures are stopped. Once in awhile I have a very mild partial seizure. Now I have learned to be gentle with myself and rest afterward. It's really important to get them validated and hopefully treated. It's also important that other people in your life know the reality and danger with seizures. I hope you can see a neurologist if you haven't already. Stopping my seizures has improved my quality of life so much, it's amazing. I wish you the best. Look at the other videos if you want to learn more, or feel free to ask me any questions. It took a lot of trial and error with meds to get the right ones, so it can be a process. But for me, it was so worth it.
ariel on health I am seeing a neurologist - and currently waiting for an EEG rest to get more tests done. I am slightly concerned about driving though - is it still the usual 6 months for each simple partial seizure? - I was so close to taking my test before all this started 😭 Thank you for replying and all the advise in your videos, it’s helped me a lot 😊
Geeky Girl 70 I’m glad you’re seeing a neurologist. If it’s not enough help, at some point seeing an epileptoligist can be a good move. In terms of driving, tonic clonic seizures are where you are unconscious, and complex partial seizures are impaired consciousness. Those are the big concern. So, yes seizure free for 6 months. Simple partial seizures there is no impairment of consciousness, so it depends on how they manifest. If it doesn’t impair your driving, then your neurologist may ok you driving if they are significantly controlled or mild enough not to interfere. In the same way, your neurologist may not make you wait 6 months after a simple partial seizure if they are really mild. Hope that helps. Not driving was really hard for me. There have been many times where I had to stop driving to change meds, and before I got my tonic clonic seizures under control. That was really hard. It’s about freedom for me. However, now my current illness-M.E. is so severe that I can’t leave my house usually and I can’t drive now. It’s a sad thing not to have that ability. Be well!
ariel on health - thank you so much for replying, I am trying to learn as much as I can about what I am experiencing and you/your channel has helped so much thank you 😊
Since I was little I had seizures and had no idea what they were at the time. People would look at me like I was crazy when I would have an attack they didn't know what it was just assumed I was acting out. I had a serious head injury about 5 years old and my parents didn't take me to a doctor they thought I was ok but i didn't feel right. Understand what it feels like when you describe how you feel when it's happening.
It's so horrible when kids are not given the help they need to stop their seizures. Since I didn't know what it was, I didn't tell anyone. It's a scary world to live in. I hated having seizures. So grateful I am almost seizure free now, my QOL has highly improved.
Some times I actually enjoy them most of the time I do not... Mine will give me up to a 10 second warning where I can end a conversation or walk away from people. Then each second it gets worst and worst. Sometimes its the dejvu feeling but no matter what anxiety is involved. I can not carry on a conversation with people, i can try but my words are all jumbled together and I have no idea what i am saying. If I am trying to unlock a door it feels like the first time I am doing it and will take me awhile, even after the aura has ended, to be able to remember how to unlock the door. Finally feeling exhausted will last me for most of the day. If I have one I know I will have them about every 4 to 6 hours for the next 3 to 7 days. That is the anxiety part. Not knowing for the next 7 days if one of these will pop up to say hello. I am controlled with Carbamazepine twice a day. BUT my big triggers are lack of sleep, drinking/drugs and of coarse missing my meds.
Yes I get the warning feeling too and my words get jumbled there's the confusion and anxiety irritability if someone tries to talk to me or have me doing something while it's happening bcuz they don't realize I'm having a seizure and I didn't even know what sad happening to me all these years until a week ago. Finally a dr figured it out although I still have to go to my neurologist to have it confirmed. But I have every symptom and every sign of having these and nocturnal or sleep seizures plus I did have a staring seizure when I was 5 that my parents and drs recognized but everything you said here I can relate to
Thanks for the share and all the effort to share it.
So glad you are able to find it helpful.
Yes, I have NF1 and I some times get these(specifically triggered by certain scenarios), and this video would help in better explaining it to doctors. Plus I am not sure if they are related to NF1 or not.
I don't know what NF1 is. I do think that it helps to have other people with seizures also describe them, because it is so hard to do. I felt like people would look at me crazy, and many have. But, ultimately I remember that your experience is real. Whatever it is, even if it doesn't make sense, it is real for you and can be debilitating. Also, there is nothing to compare seizures to, so that people or doctors will understand. Literally, I have never had an experience that was not a seizure that I can tell them what it is like. Nothing else is. So, doing the best to describe it is all you can do. Check out the book I talk about here if you want more descriptions to share with your doctor.
NF1 stands for Neurofibromatosis Type 1, it is a genetic disorder with effects different people very differently. It can either occur as a random case(for me it was random as none of my parents had it) or one can inherit it from either of the parents(If one of the parents has it then their is a 50% chance and if both have it then their is a 75% of baby having it - If I am not wrong insemination can be ued to avoid it). Many times, even the doctors have a very basic idea about it unless they are neurologists or dermatologists. And for me it was very difficult to share my experience with doctor's, but your videos are really helpful in explaining it. They are also helping me to better understand myself. Thanks again for the effort.
And my seizures, they are triggered by excessive stress and/or fear. I try to avoid all such situations. And usually they can start with shaky legs and then their is a stage where I do have the consciousness and awareness but I do not have any memories of it. But this memory loss happens very very rarely and it is more like I avoid such situations which can trigger any of these.
i felt really stupid trying to describe the episodes i’ve been having to the doctor.
like “yeah i keep remembering things and then i very remember something and feel sick and scared”
she said she doubts theyre seizures, but i worry i just did a terrible job explaining.
i do have an eeg scheduled but my episodes have been happening months apart, so i doubt anything will even show up
That’s so hard. Doctors not listening is the worst.
I was just looking true you tube and came across your video and i was o my go some one out there somewhere can actually describe what i feel and knows exactly what i have been going on for 25 years.same type of tonic seizures at 13 and focal seizures after brain surgery .
Paulina Nunez sorry to hear you’re dealing with that. I feel grateful to know there are others out there as well, helps to share experience and understand.
2 years I suffered with this I thought I had a trapped nerve lol. The worst ones were night ones,they would occur in my dream and wake me up,I would have trouble breathing and it would rise up and my arms would feel squeezed as if by a blood pressure cuff and then subside that was always the pattern of mine,day or night. I have had to lie down on the floor of a changing room because lying down helps. My neurologist took ages to make me understand these were seizures and now am on medication. They have stopped,I hope my night ones but I get small ones occasionally in the day but however small the exhaustion is overwhelming and I cant stop yawning.
I am so glad that you have figured out what they are. Also, getting them under control is so much better for quality of life. I had to try 12 meds to get the best control, and now I have almost none. I don't know if you want to try more meds, but sometimes that is the ticket to none. Wish you the best!
Thank you so much for this! 🙏🏻 so much I relate to it has helped me cement what I’ve got going on. 👍🏻🥰
This is so strange for me. I just found out today that this is what's been leaving me so confused!
RinaTheRoo I’m so glad you found out! The best step is to know because then you can treat them. Also, for me, the fear and confusion around not knowing what was happening, added a whole other level of trauma. Hope you are able to get some help. 👍🏼
@@arielonhealth The name to put to the experience is huge!
I'm having seizures now for about 4 weeks. I'm aware of what's going on, but at the same time, I can't understand what is going on around me like I kinda feel like everything doesn't make sense. When I have them, I can't control my face at all like my breathing is controlled, but I just can't control my weird facial movements, and it happens in fits. Afterward, for 2 or 3 days, I just feel depressed as hell and not all there, or I feel head sick. It cripples me literally. I'm only 22 and after about falling out at work twice because of them does my doctor start taking it serious.
I hope you find a good Doctor Who will listen to you, because that sounds really horrible, but it does sound pretty much like some common seizures.
I have NESA AND PARTIAL. The sudden feeling of being lost
How does the description of a “Forced Daydream” sound to you, regarding Simple Partial seizures...??
It’s sad that I’ve used that description all my (34 years) life. Yet no one I know understands that description.
Now that I’ve heard your description and seen other people HAVE these types of seizures on video. I really feel like it’s a good way to describe them 🤷♂️
Rick Boney I think that makes sense. Some people describe “absence” seizures as like someone is daydreaming. But the person is not as aware like in a simple partial. It’s hard having these and no one understanding. It took me 14 years to learn what they were. I’m glad you can feel like you’re not so alone now I hope. I wish you the best in dealing with them!
That's an awesome description!
Do you have strange smells prior or during your partial seizure? I haven't had the deja vu, but I get the chemical smells, I get little spacey and have very profound fatigue! It takes a while to get over it like you said; but the confusion and the palpitations and anxiety are unbelievable!! I'm on my 4th medication and have take 2 medical leaves from work so it's been frustrating. I think this medication is ok, so far but my memory is not the best
mnaik I don't have smells. I know that quite a few people do. I get very spacey after mine too. I just can't think when I have one. I try to plan so that if I am out and I have one, I have a safe way to get home because I've had some bad situations due to having a seizure out of the house.
"Do you have strange smells prior or during your partial seizure? I haven't had the deja vu, but I get the chemical smells, I get little spacey and have very profound fatigue!" Holy fuck, your partial seizures are EXACTLY like mine, except sometimes I experience extreme Jamais Vu, and other times extreme Deja Vu. I also have the same olfactory hallucinations you have. It tastes like I have paint in my mouth and I smell a very powerful, overwhelming scent of paint. I call them "paint sensations", or "painters" for short. I have these "paint sensations" right before my partial seizure generalizes and I go unconscious.
mnaik I do. I have burning smells and today I had one that smelled like my husband's cologne but it was SO overpowering and it poured out of the fridge.
I have seizures similar to this. For me, it's often when I question myself on something that I don't know the answer to (e.g. what was the name of that song again?), and then that question lingers. It triggers a snowball effect: first it's the question, then it's the worry that a seizure might happen, then it's knowing that it WILL happen, although not knowing when or how bad, then comes the seizures- the anxiety is not over yet, I'm still wondering what's gonna happen or how to defend myself. Eventually, it all falls back down, and I'm ok again. The name of the song doesn't really matter anymore. I can think about the question all night long and I usually don't because it's already stopped troubling me.
Epilepsy is so hard. I find that when a seizure starts I tend to feel upset that I can tell it's going to happen. Afterward in the past, I would always doubt whether it was a seizure. In the post-ictal state I am very confused and so that makes sense.
I used to get really really intense Deja Vu. I don't really get them now but when I do they're very intense, probably more intense than before. I have been diagnosed with multuple anxiety disorders but sometimes I feel like the seizures overlap with anxiety and maybe even be semi misdiagnosed (like the panic and anxiety that comes in before/after). I've been trying to look into it more but I know I won't be diagnosed anytime soon because my parents will never believe me or even intertain the idea. Oh well.
SpasticGalactic I hope you can get the help you need. 🙂
Never had any grand but definitely the partials. Altered consciousness. Dejavu. Odd sensory perceptions of words repeating over and over in my mind. Have hardly any memories of my life... Only started to remember the series of weird events which were triggered by an odd Metallic smell/taste(but different) or other various States
Many people have a taste or smell as part of their partial seizure. I have heard "burnt" the most, but I recall someone else saying the "metallic". It's rough to have all these. Having no memories is hard. I still can only remember times that I am pretty sure were seizures since they are vivid and strange and I felt confused and off. Wish you the best!
@@arielonhealth thank you
I can't speak for everyone with epilepsy, but I have actually grown attached to my seizures. I don't mind having them, and sometimes I feel as though they are an experience that I somewhat enjoy, although most of the time they are scary and exhausting. Call me fucked up in the head, but I accept my seizures as a part of who I am.
Well, I'm glad you no longer have them. "The worst feeling I got was a sense of worry at the deja vú" I get that exact same feeling EXCEPT I have a Jamais Vú feeling. It's like a feeling of impending doom. Anyway, I hope you live long and prosper! I'm glad you don't have them anymore! =)
I can so relate to this and it's so hard to explain to others and I feel like nobody understands me. It's so frustrating. And I hate it. This is tormenting. I'm not on meds and it's out of control. I also have sleep seizures and I am just now getting a diagnosis I'm 40! I've been misdiagnosed my entire life except that they knew I had one seizurewhen I was 5 that's when it all started for me but I didn't know what was happening to me. It's all so confusing. And the adrenaline rush feeling up my spine into my brain and in my stomach then the confusion and irritability and muscle tensing and my brain feeling like it's being shot up with novocaine then the terrible smell and taste that smells like rubbing alcohol or nail polish remover. And yes the fear feeling the impending doom is how I've said it. But I was diagnosed wrongly at 19 with bipolar and put on toxic meds for years that made things worse. Then diagnosed as anxiety and depression disorder and sleep disorder and put on more toxic and not helpful but harmful meds for more years. The drs always say it's just anxiety. But the past 3 yrs it's gotten so bad that the seizures aren't stopping or letting me sleep and destroying my health and I am trying to hold it in not let ppl see it which I have been doing so long hiding in my room and it's gotten to a point where I can't fight thru this anymore I knew something was wrong neurological and have been in and out of the hospital trying to get help with no help and even thrown into the psych ward which then they realized I wasn't crazy something else was wrong well just everything your saying is what I relate to. But can't explain to others. I have tried to tell my family and drs but they just say it's in your head or anxiety. Finally a dr a week ago said I believe I know what's going on the sleep seizures and partial focal aware seizures when I looked it up boom it was like wow now it all makes sense this is the only diagnosis I've ever had that does make sense. My counselor took me off the antidepressants, antipsychotics, sleep meds, and antianxiety medication 7 years ago things actually have gotten worse since but I think that's just because you can't just take someone off of those kinds of meds especially that many that fast and they already are having neurological issues like these seizures (which we didn't know) but you get what I'm saying. Plus I have low vit d low potassium e.t.c and I have battled anorexia thru my life also so didn't help the malnutrition issues and other health problems I have. But yeah this is such a hard thing to deal with especially not being in the right environment like right now I can't be in my bedroom because it's being worked on so I'm on the couch and my mom and brother and their friends make all this noise and all the lights e.t.c very overstimulating for me so with not having insurance and can't see my neurologist to get meds and being in this environment and not having any help or understanding from others then having other stressful situations going on right now plus my other health issues acting up like my metabolic disorder and arthritis and ibd e.t.c e.t.c this is too much the seizures are going almost non stop with no recovery time. I just can't wait until I can get my insurance back and see my neurologist so i can get the help I need bcuz the er won't do it and I'm in torment the ppl around me dont understand that I'm going thru all these seizures while being awake they think I'm going crazy because of the jerks and the confusion irritability and anxiety the seizures bring also they don't understand that I can't help it. They try to talk to me while I'm going thru it and it's over stimulation to me and I'm already feeling over whelmed and confused and in torment from the electrical zaps going thru my body the adrenaline feeling rushing thru my brain spine and stomach is a horrible feeling but ppl don't get it bcuz they never felt it. And I've been hiding things so long that now I am letting it out they think I've suddenly went mad or using drugs which I proved isn't true by taking a complete drugs alcohol screen and the psych ward let me go after a few hours instead of keeping me 72 hours because they could see it's neurological at nature not a mental health issue although it does cause me to end up with irritability, anxiety and depression at times. If I had meds a better environment and can support system I doubt I'd have the anxiety and depression so badly that the seizures bring. But I'm talking your head off lol sorry just finally found someone I can relate to thank u for sharing this v such a vulnerable thing but so helpful to so many others. God bless you
LaShawna Blanton I really hope you’re able to get some help and that things improve for you sending you good vibes.
Thank you so much for making these videos!
Tyler Gibson you are so welcome!
great stuff Ariel - dont know you but I am SO proud of you for doing this!!!
17 - 22 you only remember seizures - you poor poor kid! My best thing with SPSs is that I appreciate what epileptics who have way more intense stuff than mine actually go through - must be hell! I'm blessed with mine TBH
Thank you for your lovely message! Since it was such bad trauma, I still think about it since it affects me so much. But, seizure free for almost a year now!
@@arielonhealth I get SPSs. I get them every 3-4 weeks over a day or a day and a half. Neurologist tried me on TEGRETOL and I got Stevens Johnson Syndrome. Keppra seemed to make me depressed so I just cope sans meds. I have enormous appreciation for what “real” epileptics go through! Thanks again Ariel
No fun getting Stephen Johnson’s. I tried 12 meds before I found the best two for me, it’s a pain, but if it bugs you, you might try different meds. You are a true epileptic too. It’s still hard and seizures of any type are intense. Wish you well 😊
I think I had a siezure from sleep. I woke up thinking it was sleep paralysis and in the dream i wanted to call my mom or 911 because my body physically hurt and tingled. Felt wired. And I felt the impending doom. I can be totally awake and my vision goes out and things stretch and swirl and I'm having issues with twitching amd moving and convusling. I remember texting my bf at 3 in the morning saying I'm scared. And hes like nightmare? Sleep paralysis? Fever dream? And im like idk my head feels loud, my vision is going in and out and my body feels weird. And its scary in my head. My dreams weren't ever scary. And this happened til 6 am. I cant keep thinking its sleep issues or anxiety. Because I don't think im stressed. I dont have reason to be stressed put of the blue like that. And the vision and dizzy issues. I thought i had alice in wonderland syndrome. But my body closer to night time and sometimes during the day I can twitch hands or have tremmors and convulsions. I think I'm weird. Im not really connected to my Brian. Dissosiating usually so I can't tell if I made that happen or I just did that for no reason. I have an MRI next week though at least. I have anxiety and depression but the meds made me feel numb and made my brain zap
That sounds horrible and totally scary. Whatever is happening it’s traumatic, so that can add to dissociation or cause it with PTSD. You can get PTSD from Epilepsy. Sending good vibes. ruclips.net/video/TqVUQyfr6Ag/видео.html
Also, this is to validate your experience ruclips.net/video/VDNTuMOvej4/видео.html
Spot on girl, same here