Simple Partial/Focal Aware Seizures Description #2
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- Опубликовано: 15 сен 2024
- More descriptions of partial seizures (now called Focal Aware) that I have experienced. They include auditory hallucinations, Jamais Vu, visual hallucinations, and intense emotions. Also I talk about some descriptions of seizures by other people.
It's hard to deal with the fact that you are having an experience that no one else is aware of, but it is real for you.
Thank you very much for your explanations!
I have these exact symptoms and feelings. Especially when you said when you look around and see everyone around you is all normal and happy-go- lucky, but it's not like that in your world... that's the exact thing i think about. Like, why do i feel this way? It's depressing at times. When I'm at work, i can be standing there talking to someone, and I'd have that feeling of being "here, but not here." It sucks to have this condition. I have an appointment coming up with a new Neurologist, I'm praying he can help me. Thank you for your awesome videos, I've learned so much from watching them
Thank you I relate so much to what your saying I just received diagnosis of seizure disorder and this helps so much.
Thank you so much for letting me know, it makes me want to make more videos.
Thank you. I’ve been living feeling like an “alien” most of my life. Been to so many doctors to no avail. Thanks in pat to your videos, I have been able to write down some of my strange feelings/experiences and have something very tangible to take with me to the doctor. Keep spreading the awareness. You’ve inspired me to raise awareness also.
Awesome. Thanks so much for telling me. I know we can make a big difference if we share this because no one needs to go through feeling this way and not knowing what it is for years. It took 14 years for me to figure it out. Don't give up hope if the first neurologist you talk to isn't helpful. Describing these seizures to a regular MD is probably not going to do much because they don't usually know anything about them. I hope you get some help. I am on 2 meds after trying 12, and I have almost no seizures of any kind. My quality of life is so much better! I wish the same for you. Let me know how it goes if you want. I want to someday have lots of people write down their seizures to make a list that doctors can give to a person and say-"does it feel like this?". Because if the doctors have never had one, they really don't know how to describe it. There is nothing quite like it. I already was diagnosed with tonic clonic seizures when I was 12, but no one ever said anything that would give me a clue that the partial seizures are seizures. I think more neurologists should share this info. and I think a pamphlet with patient descriptions would be perfect. Be well!
I'm not alone. 😂😂😂😂😂
Deja vu ones are the freakiest for me. Much more intense than your average deja vu.
When I have a focal aware seizure, it normally happens early in the morning after waking, or in my bathroom for some reason, but the seizure itself is the same pattern every single time. It always starts suddenly and I get a quick moment to think to myself "uh oh.... here it comes" and a wave of symptoms all hit me practically at once. The first symptom is a very intense recollection of a previous dream or many dreams I believe I've had (I think this is referred to as deja reve?). During this time these dreams feel EXTREMELY profound and detailed and feels as if I'm having some kind of epiphany. The subject matter usually seems to be similar each time but never really makes much sense. It's normally like a series of scenes playing out all at once in my head. It's like within moments my head is filled with an entire books worth of story and visuals. I always feel amazed by what it is I'm "remembering". I'll say or think to myself "OHHH WOWWW! I REMEMBER THAT PLACE! I REMEMBER THIS GUY! OH AND THESE PEOPLE TOO! HOW COULD I EVER HAVE FORGOTTEN THIS! THERES NO WAY I'LL FORGET THEM THIS TIME".
As this "dream episode thing" is playing through my head, there are various strong emotions and physical feelings that flood over me, particularly fear and stomach drop. I will become overwhelmed with the feeling of fear as butterflies build with intensity in my stomach and in my chest. I will feel what I can only describe as a massively growing and gnawing ball of energy in my chest and upper back. A wave of heat will wash over my entire body as if I just stepped into an oven. I will begin to sweat and tremor from the flood of anxiety/adrenaline and begin pacing or trying to focus my attention on something in the room to try and slap myself out of the episode I'm having (nothing ever helps). I am terrified, while also feeling a strange feeling of excitement and curiosity all at once.
After about what seems like 15-30 seconds of this, the deja reve, or whatever that "dream episode thing" is begins to end very rapidly. Within seconds all of that intricate detail starts to fade as if it were vapor. I will then be left with only a small fragment of what it was that I was so intensely recalling. My memory just can't seem to hold on to any of it. This is extremely frustrating and frightening and I hate it. I hate not being able to hang on to that memory long enough to make some kind of sense of it, I want to be able to somehow rationalize it so I don't have to be so anxious about it.
The other symptoms like anxiety, confusion, and fear fade less quickly and tend to linger. The anxiety will hang around the longest and normally lingers for at least the rest of the day. I'll also be exhausted and out of it. I'll just want to sleep for the rest of the day, it reminds me of the feeling you'd get from pulling an all-nighter studying for a final exam cramming info. The next day your brain is just fried from all the memorizing and lack of sleep.
** After effects **
This tends to be just about the worst part due to the length of time it can take for me to feel like myself again. I will always have a variety of symptoms that can last anywhere from 2 days to 2 weeks depending on if I'm able to avoid another seizure, but even if I do avoid one, I still get what I call "mini episodes" and "random memory popups" for days. The mini episodes are like a feeling of a seizure coming on like a sneeze. I can normally hold them off before the full flood of symptoms begin but they are still terrifying and can be quite frequent for the next 1-3 days after having a seizure. The "random memory popups" are always very strange. It's like when you would get a virus on your computer and popups would just intrusively come outta nowhere all the time. I will get these weird little memories and dream memories that are completely irrelevant and can become very intrusive and annoying for days. The memory popups are similar to the mini episodes but I guess you could say less intense as the mini episodes.
During this time I will feel extremely anxious, depressed, and have some pretty intense feelings of derealization (the feeling as if you're dreaming and nothing is really real). I get lost in this strange fog where everything feels strange and off. I'll feel extremely sensitive and kind of like I've lost myself. Things just don't have that same familiar feeling, and I'll become afraid that I will feel that way forever. I'll fear my brain is broken for good and I'm gonna feel weird forever. It's exhausting.
Is this at all common and does anyone else feel these aftershocks and kind of lose themselves for a bit after their seizures? I hate not feeling like myself and things feeling so foreign and strange. It's like I'm in the upside down for days. Theres been plenty of times that when I finally do come out that post seizure funk I'll cry and be so thankful and back to myself again. It is the most tremendous feeling of relief after I feel that I've clawed my way back out of that hole. Everything is great after that until my next seizure, which unfortunately has begun to happen more frequently.
My doctor is going to start me on Keppra next week and I hope its able to help without causing even worse psychological affects than I'm already experiencing with these seizures.
I hope the meds and your doctor help you get fewer seizures. It sounds like you’ve got a good plan. Best to you.
I really appreciate you sharing all these things about simple partial seizures. I also have simple partial seizure. I experienced my first anxiety attack in November and also the feeling of doom which kinda lasted for 3 days before I calmed down. I was so confused. I also had this intense feeling of sadness for 3 days as well. There were several instances I kinda fell out of tune with some parts of my body. They just felt weird. I dunno if it's related to seizures no one seems to have gone through such. I tried to talk to someone about it the person just felt I was depressed or having mood swings. I wasn't. Not even the type to get mood swings. But hearing you share your experience is comforting. At least I know I'm not crazy now. A couple of years ago I used to have this sensation that I was falling into this hole (just imagine the sunken place from Get Out if you've seen the film) it used to happen a lot but I don't get those sensations anymore. It stopped once I got on put on Tegretol. I think that's all I have to say for now. Thanks again for sharing. It has been such great help.
Adekunle Bajo thanks so much for watching! I hope you get things figured out.
Thanks for sharing your story. I was told that I had myoclonic seizures because I was having muscle jerks every day all day and I had two abnormal EEG. Now they are saying I have motor tics and was just told generalized epilepsy. This is all very new to me. I have taken videos of my seizures and will be posting them soon. I’m trying to find a good neurologist that can actually figure out what’s going on and help me because I never feel normal I never feel good. I spend most of the day in that dizzy lightheaded dizzy feeling.
LivingWithEpilepsy I’m glad you found my video helpful. Finding a good neurologist is important. I’ve had some good and some very bad. If a neuro can’t figure it out, you can see an Epilepsy Specialist. But ultimately, believe that your experience is real, if anyone doesn’t take you seriously. Keep looking and learning. It’s really important for your quality of life to stop the seizures/whatever they are, and there are usually meds that can help. It might take awhile. I’ve tried 12 in my life, and now I have have almost no seizures. I’m really grateful for that. 🙂 Hope things get better!
Ariel, thank you so much for sharing and describing your experiences so honestly and clearly. I was diagnosed with left temporal lobe epilepsy last year and SO many of the things you've mentioned in your videos are exactly what I experience. Two or three times I have not recognized my husband, which was absolutely horrifying as one time it was right after we went to bed for the night. Just yesterday I had a seizure where I went in the bathroom and stared at myself in the mirror for a couple minutes, basically thinking "that's me but she sure doesn't look familiar". Several times I've looked at common things and they did not look familiar at ALL - such as the button panel on an elevator, it was as if I had never seen one before and had never used an elevator before! I remember standing there staring at the Up and Down buttons and thinking "Okayyyyy, how does this thing work and what do I do now??" I've also had the exact same thing with my ceiling fan (which was not on at the time) looking like the blades were moving, and one time the light fixtures on it looked like they were repositioning themselves and looking at me - talk about horrifying hallucinations!! I am in the process of trying to get an appointment for a second opinion as my neurologist doesn't seem very competent, but maybe she just doesn't specialize in epilepsy. I am in my late 50's and this is a huge disruption in my life - meds aren't controlling the seizures and I am not allowed to drive because of that, so after being very independent my whole life I have had to rely on my husband to drive me everywhere for the past 7 months. Thank you for spreading awareness by sharing your experiences - it is very comforting and reassuring to know I'm not crazy and that these seizures are very real. I hope your epilepsy is being managed and that you are able to have a good quality of life - God bless!
Thank you so much for sharing that with me. I enjoy hearing your experiences too because some of mine I have not heard other people describe. It reminds me how I would have an adrenaline rush when I realized I didn't know WHY these things were happening, and just solidified my intention not to tell anyone what I was experiencing because I knew it sounded crazy. I didn't find out that they were seizures for 14 years. I had tonic clonic seizures so I knew I had been diagnosed with Epilepsy, but I had NEVER heard of anything remotely close to what I was experiencing as being seizures. So that was horrible. I am so grateful to say that after many years I am now almost seizure free! I tried 12 meds, and I have gone through periods of no driving when the meds were not working, or when I was switching. But it has all been worth it. My quality of life is sooo much better. Some neurologists are better than others, sometimes it is important to see an Epilepsy specialist. But, I tell everyone, remember your experience is real. Some docs are arrogant and so if you are not treated well by someone, go to someone else who believes you and takes your concerns seriously. Sending you the best! Good luck with your meds and new doc!
I hope you can respond. I think my son may be having focal seizures with hallucinations. He is 4. It just started really bad over the last few days. He has been shaking his head (tensing and moving his jaw) following that he asks me “what that noise is?” And sometimes he may ask me “what’s that smell?” But I never thought anything of it because I thought he was just being silly shaking his head and moving his mouth but he is doing it more frequently.... but now along with that he is talking to things we don’t see. Screaming and yelling at them like it is a real time nightmare. Yelling “No! No! No! Don’t take the puppies” or another was “No! Noooooo! Not my baby sister!!” “Don’t hurt my baby sister!” He also just was saying he had red all over his hands. He was almost asleep and jumped up screaming and then grabbed my nose saying it was red and then acted like it got on his hands. Then he continually kept saying he had red on his hands for over an hour later. I don’t know if it should last that long. He just spent all day talking to truly nobody and I kept trying to ask him who he was talking to. He still wouldn’t really respond to me well but he is also still so young. He did get exhausted today outside and today was the worst day. He is throwing tantrums and having a hard time. I am calling his pediatrician tomorrow and telling them about what is going on. Idk what he has seen on a television but he has some horrible nightmare type of hallucinations I guess? I think he is having these but I don’t feel like they would last all day? Insight would be so great. 🥺
Oh and he also has been complaining of his tummy hurting him as well. He said it was rumbling and also was having a meltdown about it rumbling. Maybe it sounded louder to him or was just really uncomfortable? I just want to help my baby boy. My brother has “seizures” anxiety? Something? They never could diagnose him but his are not the same as my sons.
That sounds really scary. I’m glad you’re calling his doctor. Because it’s definitely sounds confusing between whether it’s some type of seizure induced hallucinations or what not. That sounds like they’re all very stressful and kind of like nightmares. Partial seizures are usually very short. The time it takes to recover afterwards can be a few hours. But usually the actual moment of experiencing hallucination is during that short period of the seizure. I’m sorry you have to go through this. I hope you’re able to get some good help. Best to you!
Thank you for sharing. I too suffer from temporal lobe epilepsy. It's so hard to describe. You did a great job
Clare Fraser It’s so crazy to try to tell people what seizures are like, because in my experience, there really is nothing exactly to compare it to, it’s so weird.
You just described my daughter's seizures word for word with the "vibrating/buzzing" she described it as a TV static in her brain that starts in the back and migrates up and around her whole head and body.
She sees bubbles/floaters that are iridescent rainbows.
Now she says she can't physically raise her hand or talk to alert anyone she's having them in class :( she's aware of what's going around her but her body feels too heavy
I’m so glad I was able to help. I know having seizures is tough, especially in school. Just tell her to keep your head up and never be ashamed about having a health condition. That’s the one thing I would change about how I lived. Obviously you can’t explain these seizures to everybody but I didn’t even tell anyone besides my closest friends that I had epilepsy. that’s just my two cents.
i realy appreciate that you sharing your experience with that kind of epelipsy , my mom had a complexe partial seizures , and i 've know that just with that descriptions , thank you , thank you soooooo mush
Khalil El Moudden I’m so glad I could help! Blessings 😀
Thank you for making this video! I have been having tingling and vibrating feelings in my head daily and I have no idea how to describe it.
Glad it was helpful! Hope you get some help.
I been feeling everywhere in my body and started to have seizures
amiya keno that sounds scary
I get this all the time deja vu and then it will get extremely strong and super vivid and then that's when these hit at first i thought they were panic attacks but now im thinking theyre seizures
POOP PANTS I never knew they were seizures for 14 years. I thought they were some kind of psych thing, but not sure what. I get how it can get so vivid. In my life I’ve had so many, that a lot of my memories are those intense moments that I now know are seizures. I used to tell people I was having deja vu, and other people just said, I do too! I now know that we are talking about a totally different experience that is sudden and so clear. I read where someone said their seizures seemed “more real than real life”. I feel that. I hope you get the help you need. Wish you the best!
I started having these years ago. They were the freakiest things ever. I was at work one time and swear I kept trying so hard to remember where I had seen this before… then suddenly it got so strong my memory completely lapsed and I swear I must have been out of it for at least a half hour. My memory was so dazed I had to keep asking people what I was just doing even though I had a slight memory of it yet I had to keep making sure. Even after someone confirmed for me, I still had to ask over and over.
I started having these years ago. They were the freakiest things ever. I was at work one time and swear I kept trying so hard to remember where I had seen this before… then suddenly it got so strong my memory completely lapsed and I swear I must have been out of it for at least a half hour. My memory was so dazed I had to keep asking people what I was just doing even though I had a slight memory of it yet I had to keep making sure. Even after someone confirmed for me, I still had to ask over and over.
Hi there! Been on the search to figure out tf is going on w/me and came across TLE. Had no idea seizures could happen while fully conscience til last week. Just thought I was nuts. Got an appt w/primary care upcoming and doing research in the meantime. Here's a list of things I'm jotting down to tell him that might point to seizure: suddenly feeling so lost at the local mall I broke down crying, feeling disoriented and lost while driving on a road I've been on 100xs, suffocating smell of ashtray with no origin (happened 3xs last wk and that's the thing that got me worried, this other stuff is wierd but that's just terrifying and confusing and maddening), feeling like I'm falling over and falling asleep while up and going, feeling like I have cotton mouth but I don't and having to force words out, feeling like I'm on a roller coaster and my heart drops, suddenly feeling aggittated and angry but don't know why, hearing conversation that's not there as I fall asleep, feeling like my consciousness is over my right shoulder and not inside of me, feeling as if I can see myself from outside myself- watching myself work and talk while feeling nauseous and confused as to how my body's still going if my mind isn't in it, feeling as if the world around me is strangely vivid and more real than acceptable, sometimes these are coupled with a mild nausea that's right in the pit of my stomach or a dizziness. Crazy vivid dreams. As a teen I was on the phone, felt outside of myself and began to say several sentences worth of words that didn't even go together, cane back to myself and felt confused and afraid. Teeth clenching in my sleep, talking in my sleep. Childhood sleepwalking. Thanks for the videos they're really helping me to be able to get a grasp on what to write down to tell the doc. 💜
These are really great things to get clear! A lot of those things sound like common partial/focal seizures. The most common smell that I hear people say is a burnt smell. Auditory hallucinations happen, nausea is common especially with a drop like you described, as well as sudden emotions. Also, someone once described to me that a seizure feels "more real than real life".
That's exactly what you said
"Feeling as if the world around me is strangely vivid and more real than acceptable."
Depersonalization and derealization can happen too.
I don't want to tell you not to tell your doc everything, but it's important to remember that most docs hear these descriptions with words that we use usually to describe psych stuff and they will often blow it off as that, and say you are just convinced you have seizures. If possible, I hope to some day find words that we can use to describe things from seizures that are not linked to psych stuff. But honestly, I have never experienced ANYTHING like a seizure other than a seizure, so what can I compare it to when I'm talking to someone who has never experienced anything like it? I feel like only other people with Epilepsy will actually know the difference when you describe the "anxiety feeling" when you have a seizure, versus generalized anxiety. I have both, so I can know the difference, but a doc hears one thing. I just say this because I have had horrible docs and know so many neurologists who are really mean and don't believe people.
A key thing is that it is all sudden. Doctors will say it's psych often if they think it has to do with anything going on around you or stress/emotions you were already feeling.
So, just a caution to remember, your experience is real, this is hard, it is important, you deserve treatment, and no one can tell you what you feel. Let me know if you have any questions. Best to you!
Holy shooooot! I have been living with exactly this experience my whole life, and have been researching mental illnesses I thought were responsible.....but this fills in all the blanks.thank you for deciding to share your knowledge with the internet!
Emily PhoenixBleu I’m so glad that helps. I spent 14 years not knowing what was going on thinking I must be crazy or who knows what. I really hope you get some good help and neurologist sometimes don’t know all that much about this type of epilepsy so definitely advocate for yourself. It can be hard to deal with them and get a diagnosis but I am on meds and I have almost no seizures anymore and my quality-of-life is so much better. I’m so glad you found out this information I hope it brings about good changes in your life.
Thank you. I to get the vibration feeling and the buzzing and definitely the muffled in one ear. Yet know one has ever believed me and problems with doctors not listing
That unfortunately is all too common. I find that doctor's don't want to just believe something you say, or they belittle it. That's really scary. I hope you can get some support.
Some of mine remind me of the giant mosquitos in jumanji flying through my head.
There are many different ways we can learn to describe these seizures. I always called it a buzzing sound but I would agree that a possible way to describe it too.
Hello, I was about 11 when I remember getting de ja vu. I use to get along with it,in my field of vision, sparkling geometric lights. After the lights dwindled, my vision would be partially blocked out. Like I could only see half of things. Gradually my vision would return along with a horrible and debilitating headache! This continued. Around the age of 23 when I described all this to my ex father in law, he said he too had the lights and headache and his doc said it was migraines. So I thought that was what I had. Until for some reason when I was approximately 33, I took my blood sugar reading whilst having the lights and it was in the 30's. I quickly ate and lights vanished and no migraine came. At that point I assumed the cause was low sugar. Everytime I get the lights I consume, they go away and no headache. But I started college at age 36 and I loved researching. I researched de ja vu and found a connection with seizures studies. It has been a long time since I have had the full experience because if I see lights I eat immediately. But the whole experience felt like I was out of my body and then it was if I knew exactly what would happen next and I knew what was going to be said. I also became very shaky and sweaty, which is also what happens with low blood sugar. So still I wonder if it is low blood sugar causing all of the experience or is it a simple partial seizure? However if mine was a simple partial seizure causing all of it, even low blood sugar, why would it cause low blood sugar and what is the connection. So more to research!
Jocie Covington Hi, I’m glad you’ve figured out a way to sort of manage it. I know that super low blood sugar and high can cause seizures. So it could be a simple partial seizure that is caused by the hypoglycemia. Do you have Diabetes? I get hypoglycemia so I am on a strict no sweetener diet and I eat every four hours with protein. I don’t know that it’s impacted my seizures hugely but it definitely helps me feel better. I get shaky and all when it gets low. 30 is extremely low though and in the danger zone. Checking your blood sugar frequently may be a must for you and help prevent that. Keep me updated because I’d be curious about it. I don’t feel well when my glucose is below 90.
Thank you for sharing! I am just now beginning to learn about seizures as I had my first witnessed focal seizure that turned into a grand mal. Still going for tests but the Dr. believes that what I’ve always thought to be panic attacks are actually focal seizures & I never knew it. He started me on Keppra and I’m exhausted all the time even though I’m sleeping good. I hope this goes away soon. Thank you for making this video...it’s opened my eyes for sure about all the different feelings you can have when you’re having a seizure. ♥️
I am so glad you got a diagnosis! So many times people are diagnosed with panic attacks/anxiety when it is actually focal seizures. Sadly, until one turns into a tonic clonic seizure (grand mal), oftentimes no doctor checks out that avenue which ends up being dangerous for the person! I hope you feel better soon. I had to try 12 meds to end up on the ones that work the best with the fewest side effects. So don't give up, you can always change meds if Keppra doesn't work out. Wish you the best!
My neurologist is not 100% sure yet..still getting testing. I was on a heavy dose of amoxicillin prior to this seizure (actually the day of my seizure was supposed to be my last dose) I read that beta lactams can cause seizures. Have you heard of that? Also thank you so much! I wish you the best as well!
Marlene Bennett Remember, your experience is real regardless of test results. I have not specifically heard of beta lactams causing seizures. But honestly, if you read side effects of many meds, seizures are on the list, even if it’s less common. Hope you figure it out and do well. 😁
ariel on health Thank you!!! 💕💕💕
I was recently told I probably have temporal lobe epilepsy by a epilepsy specialist. I experience simple partial seizures once a month, I get extreme de ja vu where I have to ask people around me whether or not I'm in a dream, I also see people around me like cartoon characters and I'll know what they're about to say and so on. But I've also had tonic clonic seizures in the past as well, and that's when I started taking medication. Now I am working to control all my seizures. Thank you for making videos about this it does make a difference when someone else is going through a similar thing.
Lydia Christina So glad you’re getting good help with your seizures! I really hope you find things that work. I so grateful for my meds. I have very few seizures now. It’s intense though just dealing with these. Be well!
Thank you. :) I hope you continue to gain control over your seizures and that you carry on to inspire others to talk about epilepsy.
Your videos have been most helpful. I am still undiagnosed though on going investigation. For the past year and a half they thought I had FND / PNES, it wasn’t until a neuro witnessed them during a hospital admission did they say I now don’t fit with PNES. I’m struggling, I lose my vision and speech when they happen, I feel everything I experience and they are intense. They don’t think they are generalised. It’s been good to listen to someone explain things. :)
Julie Goodchild I’m sorry it’s been so rough. I’ve had a lot of docs who won’t believe a seizure unless they see it, which is really stupid in my opinion. I’m glad you did get some validation and that hopefully you can get a diagnosis soon. The best reason for a diagnosis is then you can try things to stop the seizures. My seizures are almost completely controlled by meds now. It took trying a lot of different ones, and different combinations. But my quality of life is so much better. It’s too bad that lots of docs diagnose PNES when it’s not, and you can’t stop seizures without meds or something, so it doesn’t help the person. That’s something that really frustrates me. I’m sending you lots of good thoughts, and I hope you get some good help soon. 😁
ariel on health thank you :) I have a sleep deprived eeg this coming Monday. I hope this leads to treatment finally. They have witnessed two and my eyes are fixed and not reactive to light, that still hasn’t been enough to medicate yet though. The battle continues! Keep up with your videos, they are great and it’s nice to see someone so positive. X
Julie Goodchild 😁👍🏼thanks! I hope you get somewhere soon. Keep trying. My sleep deprived EEG didn’t show anything, but I hope yours will. Have fun staying up all night! 🤪
It took me 4 months to come out the seizure state, that i thought it was anxiety and panic attack at first, but the deja vu doesnt make sense. I can suddenly feel calm for couple of days suddenly the feeling came back with a base trigger, f.e, watching TV, taking bath, etc. the way it make me panic and scared is because of the deja vu, its so intense that i feel i have lived this life for so many times, thats when my brain making irrational thoughts, making me think that im dead and this is all a dream. I also have the ringing sound so loud that both my ears muffled up and i cant hear anything accept the ringing sound, my head get a waving feeling, i got a headache for hours after it happens. Now its getting milder, i dont have the deja vu anymore. At first i have the dejavu everyday for 4 months, OMG it scared me so much. Im really happy i found your video its makes me feel less alone because , i talk to my family about this and they say thats not a seizure, seizure is when you blacked out (thats what my mom said to me ) and i never talk to them about it afterwards, even when i have a SPS i wont tell them and i just said im fine. TY for the video, i love it. I hope you got better, GBU
bobom paw Wow, that sounds rough. It sounds a lot like my experience. When I was having them daily, I was so confused. I felt like I was crazy but I knew I just couldn’t think clearly because it wasn’t all the time. Scared me to death because I didn’t know what they were. Couldn’t figure it out until 12 years after my Epilepsy diagnosis for tonic clonic seizures. Just like with your family, those are the only ones that are talked about. My docs and family never ever talked about these. Helps to know what they are even if just you know. I hope that someday you get more support with it though. Sounds like maybe you can figure out some of your triggers. I like to remember it doesn’t cause them, just increases the chances of having one. Mine include sleep deprivation, sugar crash, extreme emotional experiences, head injury, and stress. Best to you!
Thanks for sharing. I would get petite mals as a kid before diagnoses. I would get a rush of panic and go numb on right side of my body
I know why is it so hard to explain. And OMG!!!! you described a weird feeling I know of. Are those hallucinations what I've been feeling. Wow. 🙁 I was very confused too! And I forget having seizures. OMG. I get anxiety and fire when I'm about to get a seizure and I get tired of it. HOLLY COW!!! I can relate so much. I should stop. OMG!! I need to rest. 😯MEMORY!!!!!!! HOLLY COW!!!!!! THAT'S EXACTLY WHAT I HAD!!!!!!!!!! OMG!!!!! OMG!!!! OMG!!!!!! I'M LITTERY SO... SO.... AHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!
My mind is all jumbled up from seizures. But I do remember waking up in the hospital. A lot. Probably more than ten times.
You are good wanna throw more bricks
Jamais vu + intense euphoria + Intense Fear+Derealisation
I had one where it felt like someone put my brain in a frying pan for a year after that lol
Seizures sure can be intense
that sounds awful
@@arielonhealth intense but so interesting.
This really interested me as I tend to get a metalicky taste in my mouth followed by the feeling of intense panic and feeling like everything I do was the wrong thing, I also get fizzy type feeling in my left nostril (the side of my epilepsy) which lasts about a minute I also get alot of day jah vu and I never knew this was my epilepsy I just thought this was normal I also get ones where I'm in middle of talking to someone and I go completely blank and unconscious x
I'm glad you figured out those were seizures. I hope you are getting help with them and not going unconscious anymore.
I get the buzzy head feeling, shortly after waking, it can be so intense, it’s almost painful... and everything sounds weird.. like I can hear the person talking to me, but I don’t know what they are saying. During that time, I look mostly normal on the outside. I tend to stay in bed until the feeling passes and I feel safe.
I think it's hard to deal with how sudden they are. I find because they are invisible to other people, it can be hard for others to understand what it's like to experience them. I hope things are well.
Listen to white or colored noise when you have an auditory hallucinations. It stops them.
I have focal and generalized seizures
I don't know if this is auditory, but I can't handle it when there are many people talking at the same time, like a group of friends or something In a small area, It makes me go crazy. My head feels like it's going to explode and I have to put my hands over my ears.
I also experience the ja me voux. I can drive somewhere where I've driven many times then all of a sudden I knew where I was, but I didn't. Sounds crazy!
The hallucinations, as a child I would wake up and really visually see a spider in my bed, however after having parents checking there really wasn't. To this day I can a presence or a shadow.
Talking about memory - mine seems to have gone from bad to worse and then panic and get confused. I then can't follow someone when they're trying to get explain something. I feel sometimes like I battle to get the correct words out. Sometimes I feel like I loose focus and daydream but can still hear them in background.
Any advice please
Lindsey Flood wow, that sounds really intense. I honestly don’t know if those are seizures. If not, they could be a sensory issue meaning the sound is overwhelming. Other people get that from different illnesses. I believe you and know it can be scary. Your experience is real and hard, it’s just not clear what is causing it. Have you ever talked to a neurologist?
ariel on health yeah. My psychiatrist did a 24 hr eeg about 1.5 years ago and it showed a lot of activity and I was diagnosed with right temporal lobe epilepsy. I also have major depressive disorder which is treatment resistant. This is all frustrating.
Lindsey Flood that’s rough. I’m glad you got it figured out but depression is the worst. I can’t imagine how frustrating it must be to have no treatment work. Mine has been bad in the past but meds work for me. So grateful. I hope you find something.
My birth mom has severe epilepsy and I have a lot of symptoms of the simple partial seizures (deja vu, depersonalisation, and de realization and lots of body spasms) but I am told that these are due to my PTSD and sensory processing disorder. They did a brain scan and it didn’t show anything weird. Not sure if I should push for an EGG or just let it go :/
I have to say, Neurology is so complicated. I have Epilepsy and PTSD. I don't have anything show up on a CT scan or an MRI. They can't always find the spot. Also, if you are not actively having a seizure you may not have anything show on an EEG. That doesn't necessarily mean you don't have seizures. The depersonalization, and dissociation etc I experience I think is my PTSD. The deja Vu and other seizures I've figured out feel different. They are sudden, have nothing to do with the current situation, are not about the subject or experience or feelings I was going through. Granted stress can trigger seizures. Ultimately, I think it's about what help you need. What treatment can help. If you try meds to stop them as if they are seizures and that works, good. There are meds that are used for psych and seizures. Even if it't not totally clear "what is what", getting your symptoms down so that your life is more manageable is the goal. Any doc who brushes you off and tells you it's not important is a jerk. Your experience is real and valid. I hope you are able to get the help you need. :)
I think as a kid I had a visual hallucination. I remember thinking I saw my dad in our back yard and, he came home and I said you was in the yard, and he said no I wasnt. It freaked me out.
I know I was very scared by my seizures when I was younger because I didn't know they were seizures, that's the worst thing I think really.
@@arielonhealth yeh, I would have petite mals as a teen and my whole right side would go numb and I would start hyperventilating and couldnt focus and talk out of my head.
Stephanie Pike wow, that’s hard. It feels so upsetting to have something happen to my body out of the blue that is out of my control.
@@arielonhealth yes it does. My mind and body is a capsule of pain it feels like
Stephanie Pike it could of been someone else you’re dads size
I understand. Keep making videos
David Kellar Thanks! It’s good to have encouragement.
My bilateral tinnitus started over 48 years ago and never stopped. There are days that a second ring also know as thibre is in one ear. The ringing does cause light head pain but it has been there for so long I don't even care about the pain anymore
That sounds rough. Some people hear a ringing just during a seizure, but not all the time. All the time sounds horrible.
@@arielonhealth I'm used to it because I've listened to the ringing for 48 years. My first seizure was when I was 53 (grand mal) They removed a neuroepithelial cyst in 2017 and the seizures are smaller now but still get them. They want to go in and remove the rest of the cyst because they removed only 98% but this time they will remove the rest of the cyst and brain matter and that scares me.
Bill Nicholl I’m glad they got most of it. Brain surgery is scary though, and the thought of taking any brain matter has always seemed so awful. But, our brains are more resourceful than we think sometimes-and find new pathways. Doesn’t make it any less big and scary. I hope it works out well.
@@arielonhealth It scares the hell out of me. Short term memory has problems so I think if they take more brain "what will happen?" Past courses I took for fun showed me how the brain works with removal or damage, but with my memory loss now the feeling is another. The referral to a new doctor maybe the turning point for me to have the removal of the rest of the cyst. Thank you for your words of help.
@@arielonhealth please get a hold of me i need to see if.im having the same.plz
Im very confused on my seizures, at work I have seizures when Im walking and someone say I fall no shaking I just do a light head dizzy feeling and a deja vu next thing I know Im on the ground its so scary I need help on witch one I have
BTOSHAW309 Hi, that’s hard. Do you have a neurologist? It sounds like you might have an atonic seizure where a person drops, or it could be a tonic seizure where you stiffen but don’t shake (clonic). A tonic clonic seizure (stiffen then shake while unconscious) is just one type but most people associate seizures with it. Are you conscious? It’s dangerous to be having that.
ariel on health yes I do have a neurologist doctor Im not conscious when I have them
BTOSHAW309 I think your neurologist needs to work harder at trying different meds and looking at the possibility of the different types of seizures you might be having.
BTOSHAW309 I really hope you can get some seizure control, that sounds very stressful and dangerous. I have a video that goes over the different types more. I will link that. I hope you can tell your neurologist to look more into options, because you shouldn’t have to be having those.
BTOSHAW309 There are 4 videos on the names and categories of seizures. This is the first one. Let me know if it’s too confusing, I’ll try to find some other sources. ruclips.net/video/9SVaRtYq1NQ/видео.html
Thank you for explaining this! I want to know what my 8 year old feels when he has these types of seizures. He’s been on every med there is 😢 he just had a VNS implanted January 18. I hope this works soooo bad. Sometimes he doesn’t remember me or he comes out of it screaming because he’s so scared.
Jasmine Christina That sounds so rough! I really hope it works for him too. It’s awesome that you’re learning about it for him. It will make such a difference in his life having a parent who really understands what it’s like. I wish you the best!
Jasmine Christina 😥xxxx
Are eyes always open during seizures?
In tonic clonic seizures, the person is unconscious, but sometimes their eyes are open a little. In partial seizures, the person is still completely conscious, so usually the eyes are open. But, motor seizures like myoclonus of the eyelids could interfere with that. Hope that helps.
@@arielonhealth Hi. How are you? I hope you enjoyed a Christmas)and happy coming new year.Thanks very much for answer on my question)My eyes blink during seizures or closed. Because of that when I had EEG and epilepsy monitoring in 2017,my neurologist said EEG is ok and eyes closed ,you have no epilepsy, you have psychogenic seizures. In 2009 EEG and monitoring showed that brain waves were look like partial epilepsy and eyes were opened and closed (within 3 days there wrere 3 seizures).But in 2017 final conclusion doctors said: YOU HAVE CONVERSIVE SEIZURES (EPILEPTIC AND NONEPILEPTIC SEIZURES) .
I am really confused where is true))) I asked then to make an appointment with psychiatrist but they said YOU DON'T NEED IT. Every month I have 4-13 seizures (never less than 4 and never more than 13) I start to feel and predict when it comes.Thanks very much for your response anyway.
Akhsarbek Getoev That sounds really hard. To me, it looks like they said you have both types. That happens to other people too. The treatment generally is to treat the seizures with seizure meds, and work with a psychologist or therapist probably to see if there are any ways to lower the amount of psychogenic seizures. I do hope you can get them to follow up on your condition. Don’t give up if you know something is wrong and it’s messing with your life. I always say “remember that your experience is real.” Regardless if the type of seizure, they need to treat it and I hope you get the care you need.
@@arielonhealth Thank you very much for support )God bless you and your family)I will be praying for you)
Amazing thing that,I know people who unfortunatelly have psychogenic seizures and they say me that they might not have seizure 1 months some times 2 month and longer.Some time they have regularly ,but me have it every month 4-13 times.Even when I happy and glad,relaxed it can happen.
When in 2007 started to take Keprra and topomax and in 2012 started to take vimpat,seizures and their frequency and types changed.probably it affected EEG and type of seizures and they look like non epileptic.When doctors said me that I have non epileptic, I was in shock))) Pseudo epilepsy I thought they (doctors)think that I pranck and Mock that I have epilepsy.I was reading lot of sites about it and was talking to people who have it.I become a happy because non epileptic seizure are easy to treat than epilepsy.But they don't permit me to take any antidepression and antistress medication ,don't make for me appointment with psychiatrist.Just advice me to give up study and to give up my job.They think that are cause of seizures.I have a cyst in the brain because of delivery trauma.doctors say it doesn't matter.
I apologise for wasting your time.Thanks very much once again.See you
Akhsarbek Getoev That sounds awful and frustrating. I had doctors disbelieve me and one neurologist diagnosed me with Bipolar and a somatoform disorder-(meaning I was making this up unintentionally but it was all psychiatric.) I kept researching and found new doctors. I also have anxiety and depression, so I know that people often blame that for everything. The key, in my opinion, regardless of EEG or what not, is what works. If seizure meds helped, then I say keeping talking to your doctors. If you have crappy insurance or get turned away, remember that you matter and no one knows what you feel or need more than you. I just wish you the best in finding help with a doctor who will really listen to the whole story and help you figure it out. It’s complicated- I mean, go figure, it’s the brain! I tried 12 different epilepsy meds and got a vagus nerve stimulator implanted before I got mine under control. I just know people will brush off people’s experiences when they don’t understand them. Your quality of life matters, and you deserve a good life and being able to function. I hope you can find the right meds and doctors. 🙂