I can’t stress enough how much this has helped, mine has gotten worse over the years been trialed on countless medications along with going through the diagnosis as I was going through puberty, I was so excited to start driving and going out because my mum had isolated me most of my life due to my father, so I was absolutely devastated when I had just started to get my license and then was told I was never to drive, I had to be taken out of school half way through grade 12 so I didn’t get to graduate or go to formal, which had been my dream as a kid. Now that I’m here I have a fear it’s mixed with bpd due to so much trauma throughout my life. I have a boyfriend but I feel like I’m ruining him and his life, I cry everyday especially when I wake up knowing my life has been taken from me while I watching all my peers get careers and houses and get married I’ve been stuck in a place where I can’t seem to be able to move forward, I have a job but can’t work more than 20 hours a week which turn into 16 with my 8 hour shifts. I can’t seem to get my own place as I’ve lived my life either not being allowed to move out of my parents or being stuck in a hospital. I’ve moved into a friends place now only because I ran away from home and haven’t gone back. I’ve lost all my friends due to being diagnosed and as they were still growing up and immature they labeled me as crazy and now they are so much more ahead of life that I can’t reach out.
Your life is precious regardless of however your health is. Start doing painting, art or anything you have interest in to keep you away from stress. If you still have seizures drink cold water immediately after you have a seizure. If you are still unwell throughout the day, you should drink a frappe or something ice blended as this will further relax your body. Sleep well and have your full day meals. Always keep a cold water bottle with you wherever you go. Watch a comedy program to reduce your stress. Keep away from smoking or consumption of anything that affects the brain. Avoid amusement park rides as this can worsen seizures. Avoid being around Chemical factories. Ask your neurologist for a medicine called lamotrigine or Lamictal as this medication is more effective to reduce seizures. Good luck and I hope you stay well 💗
I came across your video just now. Our stories are IDENTICAL. I was put on dilantin, Keppra, regular Lamotrigine. They did not help. Finally, my neurologists prescribed Lamotrigine ER 3 years ago, and I have not had a seizure since. I had a major car accident that I could not remember, which caused the wreck at age 24. I am now 57 seizure free. Comple partial seizures can ruin lives. Pray for those who suffer. Thx for telling your story. No one around me can relate. I feel better knowing someone else feels my heart breaking pain.
I had CPS for 20 years before they were diagnosed after I had a major single car accident. That was more than 20 years ago. Am now 61, married and my husband takes very good care of me. Thank you for taking the time to share your story. I wish you all of the best.
I have been dealing with this for 3 years. The same feeling. Some people tell me it's panic attack. I tell them no it's more than that. The way it starts I can be completely non stressed. Most the time I feel great before an episode. I will pretty much stare like a dark shadow fell over me. I realize something is going on and now that I have had enough of them I know the distinctive feeling that comes over me followed by a sense of great fear. The fear hits and shortly after my whole body will shake. During the episode it's a feeling of doom the whole time. Three things can happen during my episode. I can stand there through the whole episode. I can start to wander around. The urge to walk it off like I think it's gonna help but it doesn't. I can stand and as it starts just want to sit down. Never the less the feeling and episode is paralyzing. Thought and movements even though I end up walking around. Or do all three during that episode. Sometimes I'll recover and and get that worry and Ill trigger another one back to back. All episodes start the same. Often out of nowhere. However so far it's always during the evening hours. Never had one in the morning or mid day. Sometimes my dog will warn me before I even get the Aura. My dog since I had my first one senses them before I do depending on where he is at in the house. If he is close to me he senses it before I do he will come over put his head on my lap and I'll try to push him off but he will resist and not budge. Shortly after that dark feeling comes over me. Then I know.... It's about to happen again. If he is not right near me or he looks over at me from across the room as the dark feeling comes over me he rushes to me and puts his head on my lap if I am sitting down if I am standing up he stands next to me with his body against my legs he never leaves my side the entire time til I recover. My very first one I was sitting down on the couch and he came over put his head in my lap. I tried to push him off and he would resist and be reluctant and put his head in my lap. Seconds later impending doom feeling came over me with this dreadful fear. Then the shakes. Lasted what seemed like more than five minutes. Didn't know what to think. Didn't know what happened thought it was a panic attack. This happened about three more times. In a matter of a week or two since the first time. The next 3 times following my dog knew before I did. After this I started to worry. Started looking into this. After my first four times I became aware and that distinctive feeling I know it's gonna happen just before it does. My dog always is by my side each and everytime.if he is near me before I start he is always there. If he is not and it starts without him he always is by me or head in lap depending on whether I am standing or sitting at the time. He has never missed one. He either is there before it starts to warn me or if he isn't in the vicinity he gets to me as it starts. I have had several in the last 3 years. Sometimes they come in waves. 2 in one week. One a week for three weeks. Go a few months without one. Then get a few more in a months time usually one a week or two a week and one in a few weeks. There isn't much of a pattern to it. Then go quiet a month or two and start again. Its very weird. Now that I have insurance I am gonna get checked out. Anyone else experience this??
Many thanks for sharing. I was diagnosed with Grand Mal seizures in 2015. Life changing, but doesn't have to define your life. Glad to hear you doing so well.
I am so thrilled I found your video. Your story is exactly the same as mine. My primary doctor misdiagnosed me with generalized anxiety disorder and depression since I was a teenager even though I've experienced the classic signs including passing out. I've passed out, broken my nose, and got a concussion. I've passed out while driving and ended up on the other side of the road. I had to ask to be sent to a cardiologist for a year which proved nothing and they still continue. It wasnt until I had my first bout of vertigo and went to see one of the nurse practioners I work for that she finally had the chance to ask me about these issues I've been experiencing because she's heard me talking about them for over a year. She was the one that finally told me that they were seizures and I needed to see a neurologist. I called my primary doctor to tell her what was said and she got me in within a month meanwhile we did the EEG which showed seizure activity and a brain MRI. Unfortunately, the brain MRI showed lesions and early signs of MS so I had a double slam. I've had a handful of times where my seizures have led into tonic-clonic seizures which has scared the hell out of me, but luckily that is rare. The usually symptoms are the most intense deja vu followed by just a sickening level of nausea, pain up my left arm, and my vision goes out for a split second or I will pass out all the way. Afterwards I will have stroke like symptoms that can last for hours or a couple days meaning I stay in a state of confusion, I'm exhausted, I can't remember even when I'm in the middle of a sentence it's like my brain shuts down, and then there's the inability of getting the words in my head to get to mouth like the wires in my brain have been cut. Anyways, I share in your delight of finally have the right diagnosis and being able to show family and friends that I wasn't crazy! :) Thank you for so much again for posting! !
I can relate also I don't black out or have outward signs, but people are uncomfortable with me when I don't speak well & its ruined my self esteem & the stroke like feelings afterwards have ruined all my jobs as I can't keep up. Have you been able to work? For me after many years its really effecting my mental health & learning capabilities, & I routinely get employers & family getting angry at me. Then friend tell me I have to just work harder so I leave my situation & more away... I agree I need to move away but I am not currently well enough to hold down the job. Its very very hard & its only recently I have found a supportive therapist whos doing research with my & I am saving to see a private doctor, because my GP won't take me seriously & I can't change due to location reasons but as soon as I am well enough I want to move on to a more positive environment.
thank you for sharing! I had seizures since I was little. I had no clue what was going on. I called it "thinking of weird things" and it wasn't until highschool before my mom became concerned, as the frequency was increasing and I was becoming aware that this was not normal. I was extremely shy and had severe anxiety and when I look back, I think it was all related to my seizures. I was different and no one understood. I even wondered if I was crazy or possessed by the devil. The feelings during the seizure were horrible. The deja vu was crazy, like I had access to some kind of really important information that I forgot as soon as it was over. I also felt confused afterward, once I even walked out of the restroom with my fly down - in high school! When I was finally put on medicine, I wasn't officially diagnosed with epilepsy. I was told that the EEG results showed "abnormal activity" The doc put me on anti seizure meds before I started driving. I'm thankful that it never got on my record, because I may have never been able to drive. Thank God the meds helped, but I didn't really know what was really going on until I did my own research.That's when I learned that I most likely had complex partial seizures. I took Tegretol for years.When I decided to start a family, my doc put me on high levels of Folic Acid to prevent cleft lip. My baby was fine, thank goodness. When my daughter was little, I kept forgetting to take my meds. I didn't have any more seizures (had been seizure free for years) so I decided with my doctors help to phase off of the meds. I'm very thankful that the seizures didn't return, but I'm still haunted by it. The positive spin for me is that I can empathize with the students that I work with at my job.
Thank you for sharing your story. you're right, even now in 2019, you can't find a lot of people's experiences with partial seizures. I came to this video after having a nasty cluster of partials that involve that same fear you described. I also remember things that make it worse and I got stuck in those thoughts tonight. I am not sure if it is deja Vu because it is not like the moment feels familiar, rather the remembering feels familiar, if that makes sense. I think many people don't want to talk about it because it sounds so bizarre and very hard to put into words. So, I am glad you did.
I have complex partial seizures and didn't know until I was 17. I keep a log to use with my doctors. Thank you so much for this, it means a lot. I do my best to raise awareness and I think you're doing an amazing job!
Hi everyone here in 2021! I cannot believe I made this video 6 years ago. Please support me 🙏 instagram.com/itsanniebean I have been so overwhelmed by the feedback, getting all your emails and hearing how this video has helped. Just remember you are NOT alone in this, we all experience this condition differently, and we have each other. My blog www.talesofanniebean.com - look after yourselves, keep safe and let's keep spreading awareness xxx
Thsnks very much for response) During epilepsy monitoring , EEG(BRAINWAVES) were normal, eyes were blinking or closed, shaked left limbs..But most and main argument 8s friquensy of seizures .I have 4-9 per month. Nor less neither more
Hey Annie B I was wondering do you always have daja vu when this happens? I have been having weird sensations in my head and I have horrible migraines anyway and my body can feel so weak and weird. I will know something's not right and it's scary. I dont really have daja vu but I've gotten very confused like I couldnt hardly talk etc. Does this sound similar? I have no idea what's going on my neurologist wants to do a mri on my brain.
Hi Annie! I have had partial seizures for 40 years, and my Neuologist started me on Xcopri......a really game changer!!! Contact me if you want to talk!! Steven Harris
I got diagnosed in September and it's so good to hear someone else talking about it! Especially this deja vu feeling, I find it so hard to explain to people what it feels like and how paralysing it is, the fear is so real!
Thank you for posting this video my 2 year old was just diagnosed with Focal dyscognitive seizures and it has been a whirlwind of emotions so far. She just did her second EEG and it came back confirming everything. I had to get a second opinion because the neurologist said he didn't think it was seizures and I told them I wanted another EEG I knew it were seizures and I wasn't giving up. The second neurologist listened to me and actually gave me a name of the seizure she was having and the EEG confirmed it. I'm happy to finally have answers but heart broken at the same time. I am on RUclips for countless hours trying to watch videos of others with the same seizure just trying to understand and coming across your video really brings comfort that my daughter isn't alone and if she has it while an adult she will be ok. Thank you!
I know this was posted three years ago and I don’t know if you will ever see this, but THANK YOU. I cannot describe how good it feels to hear someone else explain in their own words exactly the same thing I am experiencing.
Mate, your story is exactly like my epilepsy. I’m 43 I had my first one at 30. I’m on medication that helps and the keppra was no good for me either. I sometimes pass out but not as often now. You are an inspiration. Thank you from down under.
Which medicine are you taking now and how is your health? In your next neurology appointment, ask your doctor for a medicine called lamotrigine or Lamictal Good luck and I hope you stay well
Thank you Annie, for sharing your journey. I'm 61 years old and got diagnosed with focal impaired seizures (complex partial seizures) last year after a car accident (no-one injured, thank God), that got the diagnostic ball rolling. Now I'm not allowed to drive (here in NZ you need to be seizure free for at least 1 year) plus, I'm only allowed to work under supervision until 6 months seizure free which is fair enough since I'm an anaesthetist. In hindsight I likely had auras in clusters for the past 20 years. They feel like I am about to pass out, like having a faint. I crouched down immediately and this "faint" went away within seconds, as faints do. Only last year the seizures changed to impaired seizures, the first one of those causing the accident. The diagnosis came as a deep shock for me knowing that it won't be cured, just the seizures suppressed. The memory loss is really scaring me regarding my job, I just hope it stays away for long enough so I can enjoy my work until I retire in a few years. I am lamotrigine which so far is holding my seizures at bay.
Thank you for mentioning the “aura” or phase that seems to start all my seizures; it’s that strange feeling of “feer or panic” that brings me such anxiety. It always starts in the top of my stomach and runs its own cycle. This is the warning to me that a seizure may be on the way- so slow down a little,or even stop for the moment.
I have epilepsy too and I have both complex partial seizures and grand mal seizures, and I was diagnosed when I was about 12. I tried a lot of medication too, but right now none has helped me sadly yet... My family has also been very helpful with my seizures, but they also don't want other people finding out that I have epilepsy and sometimes it makes me very depressed that they treat me like a 2 year old when I am almost 25!! Nobody will understand what we feel like until they actually go through it themselves, and you are very lucky you have a fiance that has been there for you :)
sat here sobbing - I've spent 4 years being told I'm suffering anxiety and depression. But strangely only at night. Just been told it's Complex partial nocturnal seizures. Thank you Annie
I’m going through this for the past couple of years. Hearing your journey has been what I needed. Thank you for being so open and brave in talking about partial seizures.
I have a neuropsych appointment in March. I've been experiencing something similar to this for three years now. When it first started happening, I went to a doctor and they told me it was anxiety (I have a history of panic attacks; I know what panic attacks feel like, this is very, very different). This past December I went to a different doctor who took me seriously and got me the appointment. I am so, so ready for answers. I am crying reading this because it gives me hope that maybe I will get some real answers. Thank you so, so much for sharing.
Your story is just like mine! I was told for years that my seizures were panic attacks. The horrible panicky DeJaVu feeling followed by a feeling of fear and panic is exactly what I experienced. I am going into the Neurophisiology Monitoring Unit for a 3-5 day stay to monitor the seizures next week.
Annie, so glad I found you. Sorry for what you have gone through. I've suffered through 3 forms of epilepsy since the age of 5. Had 2 brain surgeries to help with the Complex Partial, as it was caused by a tumour, but something formed in the left side of my brain, and the neurosurgeon decided to go to Hawaii instead of doing the operation... He opened my skull, and LOL my brain burst. Coma for 6 days.. But that's another story. Look so forward to hearing from you, and sharing music !! Hugs, Seana
Thank-you for your story. I only just been diagnosed today by neurological testing including an EEG. I went there due finding out why I have cognitive decline and headaches. I was shocked to be told, “You have epilepsy .” I never had a seizure I told him. It’s not the whole brain only the back of the brain. The EEG graph was all up and down and that part of the brain has constant electrical activity. He told me you had multiple seizures during the EEG. I don’t even know what that feels like or looks like. I never even knew. He thinks I have had this my whole life. My Mum is like “Oh that makes sense now.” It makes no sense to me. Anyway, I struggling to find information on non symptomatic Epilepsy. I don’t know what to research. If you find medical RUclips videos of medical articles please send them to me. I don’t know what to research. I lived a very normal life. I am so confused to why the back of my brain has seizures and why I have epilepsy. When I function normally at work and every day life. I want to find some understanding to this mystery.
I’m 44 and had my first of eight focal seizures of the right temporal lobe and amygdala in June. Like you, everyone thought I was nuts. Heck, some people still act like it’s just a headache. Another accused me of relapsing with alcohol. Nope I’m clean as a whistle. So the doctors passed me around since the early 2000s and the diagnosis was always something to do with mood disorders. I was on a number of antidepressants, which may have provoked my first and subsequent seizures. I am now on a good anti seizure medicine that works well with my mood stabilizers. I’m sorry you went through this. We all have this thing in common and it sucks, but we’re here for each other
I've had epilepsy for years now but quietly suffered mentally through it because I don't know anyone who actually knows how it feels. Although it is different type of epilepsy and also a mild form of epilepsy in general, this video was so nice to watch. Thank you for sharing!
I have simple partial seizures with psychic symptoms since I was about 8, and I wasn't diagnosed until 19!!!! I thought I was an absolute freak and there was something wrong with me! I had an awful experience with Keppra as well. I stopped taking it after 3 days because it made me extremely tired and hostile. Thank you for making this video. I knew I wasn't alone in this, but it's nice to hear the voice of another person who is like me. P.s. There honestly needs to be a support group or some sort of online chat for people dealing with forms of epilepsy!
Thank you for sharing I just got diagnosed and i thought I was crazy! I was "passing out" for a year and a half before getting someone to listen to me.
Thank you so much, Annie, for sharing this with us. I, too, have epilepsy, and I have had generalized seizures along with focal seizures (including both simple partial and complex partial). I really hope that things will get better for you. If anything, you can comfort yourself knowing there are many of us out here who have to deal with the same kind of thing as you. ;) Take care!
Doctors wrote me off for a long time. I was told I was having panic attacks. It is hard to get a diagnosis. This is exactly what happens to me. They got much worse during a particularly stressful time in my life. I was finally put on seizure medication which has helped tremendously.
Thank you soooooo much. I have a similar story and I’m glad I’m not alone. No one understands these seizures and when I’m try to explain what is happening to me I can tell they don’t believe me because I stay conscious and can still talk. But my mind is in a state of super daydream and out of body. I have to focus so hard just to function. Comes on instantly and fades in about 15 minutes. I have been diagnosed with complex partial seizures. Thank you again! Kathryn
thank you so much for this. my 4 year old has complex partial seizures and it's really hard to understand what she's going through. she's 4 so she can't articulate it very well. this really gave me insight into what she might be feeling. thank you!
Thank you for posting this. I was just diagnosed with complex partial seizures by my primary doctor and I am seeing a neurologist at the end of the month. There's a lot of uncertainty and I'm currently not on any medicine for it. I had my first big seizure last night - complex partial switched into tonic-clonic and I kept on falling in and out of consciousness. Went to the doctor today and she said it was a psychogenic non-epileptic seizure, but last night I was given Neurontin and it helped. So it is definitely epilepsy.
Thank you so very much,I have seizures,,,i had a bad fall 13years ago with a brain injury,,it’s hard some days,,,after watching your video,,,i dont feel so different now,,,Sandy 😢💕
Thank you so much for sharing I also had the run around for a few years but thankfully I was finally diagnosed with temperal lobe epilepsy. I have not been fortunate enough to get control but I have learnt my triggers so if I look after myself they reduce. I am now in my late sixties and I find it much harder to recover and my memory is getting worse. Hearing you wonderful people is so wonderful and I dont feel so alone.
Hi Annie thank you for posting this your videos that describe your seizures are much like what I am dealing with! I deal with the shame and embarrassment. The doctors keep telling me that it’s this that every time and it’s annoying.
I can't thank you enough. I am a doctor and have been suffering with these seizures. I was great to listen to you. I feel that I have talked to someone who os just like me in a casual way.
My Grandmother has epilepsy and I have been diagnosed with panic disorder. Now we are doing more test, I go for my EEG tomorrow morning. I pray it is epilepsy to be honest, I can't keep living in this hell. Thank you for this vlog, I appreciate you.
@@AnnieBean thanks for your video! I have an EEG 11.30, and over 20 years post meningitis and being misdiagnosed since 14 years old... I would love to know how to prep for the eeg. Took Anti depressants, made me wired in college, anti psych gave me severe faint spells (narcolepsy and absence seizures is what they tried to say I have 2 months ago, suspended my DL and just said to try melatonin which doesn’t help me get quality rest as klonopin did. No medication and no license due to a seizure disorder.. too long of a story 😎) I had seizures every car accident I was in, and the one when I was 17, I am grateful I didn’t hit anyone. Malpractice is very unfortunate and I am looking to shoot a docu series early next year, as my former colleague would like to produce my story. It will be positive, as I too, am very content, not depressed lol Please let me know if you would like to schedule a zoom call with me. I wish you a very happy thanksgiving and praying this eeg goes ok next Monday. I believe it’s epilepsy and narcolepsy due to my symptoms. Nikki ❤️🐶
I'm suspected of having a complex partial seizures, but no one is sure yet and I just... I'm afraid but it's only a guess I may have it. I've done quite a big research and I'm so happy to find this video - most vlogs are about "stereotypical" (I don't feel like it's a good word but I have no idea how to say it) epilepsy with petit and grand mal seizures and here you talk about something I may be going through. I still don't quite get it, especially because I do not black out - I just zone out for HOURS, with my mouth dry and my eyesight being worse than usually, with me being able to do things, but doing them just feels like it's not me doing those, but only my body (still don't know how exactly should I describe it) without my control. I can't focus, I don't understand what I read, I don't know what words are coming out of my mouth. I just don't know what's going on around me, but as I said - I've never blacked out, I always remember what was going on (after the feeling is gone) and I just hope it's not epilepsy. And for sure it is not some kind of mental illness. Sorry for such a long comment, I just needed to let everything out, because I'm simply scared and also very happy I've found your video talking about complex parrial seizures. You did a good job and I wish you the best!
Thank you for sharing. This truly was helpful and touched my life and it’s rare to find someone who talks about this online. I need more positive faces like yours to encourage and be honest about triumphs. Yet, you continue on. I am now subscribed here in America!
Thank you. I don't know if this is my experience, but your story sounds so familiar, and whatever it is, I feel less alone. You are brave and wonderful for your openess.
Sitting here watching this video with my 12 year old who we think has been having CPS, which have presented like panic attacks. This last one was the worst and we are researching the heck out of it. So grateful to have found this video, I smiled and cried for my baby girl. Thank you from the bottom of my heart for sharing your story.
Thank you for sharing. I am 15 and have a very very similar story, I was also had a bad reaction to kepra ( i don’t know how to spell it). And they think I have been having complex partial seizures but on this last New Year’s Eve, I started having myopic seizures so now I have both and I was finally diagnosed with juvenile myopic epilepsy. Hearing someone with a story similar to mine is super helpful and makes me feel less alone. Thank you
I'm so glad I came across this . I appreciate someone else talking about a journey I went through. Good job explaining how it feels. FIrst time I heard someone talking about seizures the way I experience them.
Just received a diagnosis today after 2 years of being told I wasn't worth doctors' time or they were just panic attacks. It seems really scary and I know there's a long road ahead, thank you very much for sharing your story and giving me hope for my future.
Thank you for this video! I have had this go on since I was very young never understood it. My boyfriend gets very concerned for me and started looking into things and I believe I have it. I know it and I want to get a diagnosis now. I genuinely thought I was the only one and there was something wrong with my mental state even though when I’m not having them I have no other problems. This video gave me so much reassurance so thank you x
I want to say thank you for this video! I was diagnosed with Complex partial seizures and I am trying to gain more information on the subject. I have my own fitness company maybe I hope to one day use my company to raise money for epilepsy research. Y.A.M.S. Fitness it stands for You're Always Motivating Someone. Thanks agai n for sharing your journey. I hope I can be as brave as you one day!
THANK YOU SO MUCH FOR THIS. I have all the symptoms and I’ve been diagnosed with BPD and major depression with anxiety. My whole life I’ve felt like a mess and I’m on tons of medication. You’ve helped more than the tons of doctors I’ve seen!
I have the same kind of seizures, and have struggled for years with Doctors and ER personnel telling me I'm "mentally ill," "panicking," "faking," etc. My housing and job were on a month-to-month basis, and when my license was revoked last month I lost both (housing/job). I live in a rural area with no disability resources, and have unsupportive parents who don't care to look into epilepsy/seizures, etc. It's been an incredibly difficult journey, and it's far from over. Looking forward to the validation of my EEG at the end of the month. :) Thanks for this video.
Thank you for doing this video. I have recently been diagnosed with complex partial epilepsy and you have helped clear a few unanswered questions for me. Much love
I just recently got diagnosed with partial complex seizures 3 months ago and you described EXACTLY what I went through! I'm so glad you shared your story and I know that I'm not alone in this battle. I wish you the best and may we fight this battle together!
Although this was posted more than 2 years ago, I truly thank you for your video! It helped me immensely! I believe you can imagine how much this helps me seeing that you also felt confused and alone! Thanks dear!
Great video Annie. And you are so right about turning what seems negative into positives. I was diagnosed in my early 20s and was just going to university, so lost my licence too, but ended up doing a lot of cycling and also did a triathlon! Now driving again, but still keeping active and positive. Keep up that great attitude and keep sharing :)
Thank you soooo much! I have epilepsy as well and was on Kepra,now taking Lamictal. Covid has taken me back a few steps. I believe its from being rundown and stress.
I have complex partial seizures and I've been having them for roughly 4 years and I haven't been fully diagnosed yet cause my doctors keep trying to avoid epilepsy but that's what it is. I've had more than 100 a year and it's nuts. Epilepsy really sucks and it is scary. I'm on Keppra right now and it's not working but all my family and friends say I'm just being stupid but I know it's not. I'm glad I finally found someone who can finally say it too so I can prove I'm not being stupid.
And I also have grand mal and absence seizures but most of the time it's complex partial. I've have 3 in a row before and it was terrible. Plus recently they've been getting so bad, I'll wet my pants and I can't stand it ☹️
The drs. Couldn't help me. I have a similar story. I appreciate you telling your story. I have been managing it with a keto lifestyle. And I will back you up on the devil pills.
Thank you. The way you described going through the steps leading to your diagnosis and then coming to grips with the changes needed resonated with me. Especially appreciating things in a different light. Much appreciated. Cheers.
Thank you for this video ❤️ I have been having what I thought were dizzy spells, or even early menopause or something but I finally had one around a coworker and she’s the first person to mention seizures. My doctor initially thought anxiety; I went to the ER due to the severity of one and she thought it was just because I was hyperventilating. I am upset that doctors don’t think of the possibility of seizure activity but am so relieved that I’m not alone. My friends and family have suggested anxiety but I’ve had anxiety and depression since my teens and they have never inhibited my ability to move, talk, or hold things. Thank you! Thank you! Thank you!
Thank you so much for doing this video. Im currently going through the diagnosis process but with simple partial seizures...and getting a lot of push back saying they are panic attacks...which I know they aren't. I'm just waiting for a prolonged EEG and kind of hoping something gets proven as its better than limbo! Thanks for sharing x
Bless you sweetheart I have exactly the same they only realised after constantly saying ‘ Depression ‘ exactly what I had was when I had a huge fit and was told I had an ARTERIAL VENOUS MALFORMATION. In my left temporal lobe It’s hard to explain to people about our fits and you explained exactly how I do so you done well I understood what you meant. This also affects my short term memory so I don’t even remember if I’ve had a seizure. Fair play to you x
I’m going through this right now and it is beyond terrifying. And hearing “it’s anxiety” or you need to see Psyche first if you are becoming overwhelmed with feelings of dread during these “episodes”. It’s so disheartening.
Thank you so much for this video Annie. I have suffered from Simple Partial Seizures since I was 12. I had a Complex one about 12 months ago and subsequently lost my licence too. I would have been allowed to drive again next month but today I had another Complex Partial Seizure at an exercise class too....your auras sound VERY familiar and like yourself, I hate hate HATE the fear/terror!! Listening to you, I will do my best to try and adjust to this new development. Thanks again :) x
This is me!! Thank you for making this video ! I feel less alone and found nothing on complex partial seizures except this. I was diagnosed a few months ago amd was on keppra too ! It was the worst drug ever and now I’m on lamaotrogine I hope it works. Thank you
Oh, thank you so so so much. I was diagnosed with epilepsy in January and I've felt completely alone and scared. This is so eye-opening and I relate to so much. Thank you.
This describes how i feel and the things you've said, I also have. The neurologist thinks they are anxiety, but they don't seem like that to me. I had a clear MRI and CT scan. I am awaiting an EEG and am anxious about the results...
I have a long story which I won't go into too much detail over, but I have this but have not been understood by those around me & have lost jobs, been treated badly by family, & have wasted years in a depression & anxiety state believing I was mental & also a bad weak person. I hope the drugs will work for me, starting them this week. I am anxious about their effects on cognition & work recall as thats where I already trip up & get mocked for. I've been bullied & casted out my entire childhood for being 'always ill' & a 'bit weird at times' but when I explained what I was feeling I was always told 'theres nothing wrong with you its all in your head', which is such a bloody hypercrital line! Anyway, my experiences with others has not been helpful, & I really hope the drugs work so I can be well enough to improve my life quality & networks to more positive places. Has anyone else experienced this? Negativity from others that has just lead to more stress, more seizures, & more handicap? Did you manage to get out & turn your lifes around once the pills kicked in?
Thank you for sharing this! Our little one is 10 months old and it’s hard to understand what he is going through since he can’t describe it. This was very insightful. I hope you’ve reached the ever reached for “ 2 year seizure free” mark!
Firstly, I can't say how amazing this video is and how much you have just helped me. It's currently 5.40am where I am, and I'm sat in a hospital bed having took an episode earlier. I've never felt so much relief to see that these episodes are not just in my head. Ive had doctors telling me it's just panic attacks etc. In my gut I've always felt it wasnt, and that it was something more. I'm hoping when the doctors are round in the morning I can explain now how similar my symptoms are to the ones you've just described. Wish me luck!
Even now I feel like I'm going mad with the symptoms, like I'm imagining them... even now! I have them in my sleep too but exactly like this. It is so strange and so hard to describe to anyone. Its like a fear but a different kind of fear and feeling that doesn't pop up in any other part of life. Like a new emotion. I'm so pleased this has helped you, don't let it box you in you can still live a great life with the condition. I'm up mountains, doing triathlons... honestly getting through diagnosis is the hard part but once you're through, you can start your new chapter. Sending a big hug 🙂♥️ I'm always sharing over on my Instagram instagram.com/itsanniebean
I ha e a nearly identical story. Started having these episodes (extreme feeling of doom). Doctors blamed anxiety but eventually was diagnosed with complex partials. Neurologist put me on Keppra and it was terrible!! Then switched me to Lamotriguine and it works great. I hope you're doing well. Thanks for sharing your story!
I too have Partial Complex seizures. Started with Kepra and it made me very angry and uncomfortable all yje time. Now take Divalproex which I tolerate well. I was allowed to drive again after six months without a seizure. Thank you for your video. ❤️
How are you doing now? I've also been suffering from this for 16 years. Still not controlled. And yes, people are so ignorant and unwilling to understand. Thank you for this video! Your right. No one really talks about complex partials.
Thank you so much for taking the time to put this up on video. Our Dad has been diagnosed with complex partial seizures....difficult to get the diagnosis and even more difficult to understand. It’s been great to hear about your experiences. Dad is on Keppra. Take care and best wishes
thank u for putting up this video it help me out. the way u expand the start of ur complex partial seizures explained a lot because that's how i feel when one coming on. for a long time i thought it was only me having those kind of partial seizures
I was diagnosed with simple partial seizures after having panic attacks, migraines, vertigo, derealization, cold sensations at the top of my head nearly everyday. I am scared to try Lamictal. I’ve been taking vitamins but will try my new med soon. Thanks for your story. I was told I needed antidepressants, too.
Thank you for posting this video. Not just for me but hopefully this will help my family and friends to understand. I have multiple different types of seizures I deal with Complex Partial Seizures just one of them. I was told for every they were episodes. I had my primary assistant tell me I was severely depressed. I am lucky and have a dog who would tell me upto 2 hours in advance I would have an seizure so I wouldn't leave the house. This day my emotions kicked in and I had one at the office. My chart still referred to depression 😕. Luckily my neurologist and my main primary knows what's up.
Thanks for sharing! I am very similar and my doctor kept telling me it was panic attacks till one night I actually had a proper full on seizure and woke up on the bathroom floor , bitten my tongue so badly and the fall had very nearly broken my arm. Only then they listened! I'm now also on lamotrigine and it's lessened the ones I call my "head attacks" but still trying to get the dosage correct for me. The feeling of sudden extreme fear you described is EXACTLY how the mini ones make me feel but I'm able to talk and function and yes, nobody would know I'd had one.
Thank you! Im a complicated case. I took an EEG and it was abnormal. My brain waves spiked. I took another 16 hr EEG and my spells did not show up high enough. The doctors said it is not epilepsy or seizures. For now they call them non-epileptic episodes.
Incredible story! Since you shared your story, I might as well share mine. I have epilepsy - simple partial seizures, and they are very similar to what you were having, except for the fact that I can communicate with people during one. I can tell people if I am having one and they won't know if I have one unless I told them or I made a dramatic scene (such as falling). My auras last 5 seconds before I get one, so I really have not time to think about where I am going to go to have it. Sometimes, I have mini auras, which are auras where it doesn't lead to a seizure. The feeling begins in my head and goes toward my right knee. Funny thing is I was operated on to remove these over a year ago; they went away for a year and came back. The medication I am currently on is Kepra and Clobazam (if I went off the clobozam then I would return to Grand-mal seizures), and they don't have any affect on my treatment. So this is my story.
I am on a new medication called Lacosamide, and they seem to do the job. I still get them at night every so often, but I feel much better. Thanks for asking :)
Similar story here. 15 years living with misdiagnosis- anxiety & panic attacks. I have simple & complex partial + started having nocturnal tonic-clonic in Feb '15. For years I'd wondered why my panic attacks were different to other people I'd spoken to. One day I explained, to maybe the 4th psychologist, what I felt when having a panic attack and how they'd changed over the years (including a few auras). She looked me in the eye & said ' I don't think you're having panic attacks'. I was diagnosed in Nov '15. Keppra also depressed the hell outta me & I've switched to lamotragine. I'm still having seizures as often, but they're not nearly as bad as they used to be.... More tests & I'll know how we're moving forward with is. All the best. Thanks for sharing 🙂
Omg, the entire video I just kept nodding my head in agreement Hi, I would like to start by saying this , in my life , is the most relatable video ever, ever Here's my story So, at the ending of my 16's , one fine day, doing my physics homework ,I suddenly lost connection for a moment , it was like being here, then a monent of your life is missed, like skip in a beat then normal again, and the only thing I thought was "What just happened " Then I turned 17 and now these blankness thing started to occur more frequently and I started to feel them coming, I tried to distract myself in many ways possible, sometimes I could , other times couldn't, so i used to go blank and then it felt like being unconscious/unaware then when I returned to my normal self I used to forget what I did the entire day, but on trying i did recall it back, sometimes it happened so much by the end I had terrible headaches ..and the entire feeling was the most horrible in the world and the worst part was I couldn't even properly describe in words what happened, because it's a feeling... From my childhood I dud have anger problems, then weird social phobia like for every single thing I felt guilty, and was and am still very very scared of doctors and sharing my symptoms were the most scary thing ever with them so I didn't go.. But I was desparate to know wgat was happening to me,I searched everywhere on net , but since I couldn't exactly describe what I was going through, i didn't get the answers , once I was told maybe it's depersonalization disorder , so I thought maybe... Fast forward to 2 years, 2 weeks after my 19th birthday, Though I don't remember any of it, only felt like waking up from a deep sleep and my mother and sister sitting beside me, but I got to know I had a fit/tonic clonic convulsions, my sister saw it since we sleep together, and called for my mother, I bit my tongue, my llips turned blue etc.. I felt confused and disoriented the entire day Noe, I couldn't avoid hoing to doctors, they heard everything and suggested an MRI with a dye It was absolutely normal We then went to neurologist, she heard me and said it maybe Juvenile Absence Epilepsy and started me on levera(same as Kreppa) Now that moment I felt, finally after years of searching ...this is what happened and it didn't matter what i had just I wanted relief and treatment... Then intially my meds worked well, i did have aura but not beyond that , 2 weeks later Iam facing symptoms of depression( this I feel having from when i was 18), panic attacks extreme, fear extreme, and my seizures(absences) are worse , so many together, and with a weird intensity, Later , I did feel scared, scared of society treating me differently, scared of sleeping, going to bathrrom, college, thinking what if it happened in front of everyone, I thought once i get the meds things will start improving but no... , I hve to face more side effects of meds now..no energy, appeptite etc... Also it's hard for my mother to accept it, i can't explain my feeling to her , what I feel during the seizures, and also my eeg report was normal, so... I am 19 now, I am currently having my uni exams, i study microbiology Honors, I am done with 2, and the moment my exams are over, I am going and taking both physical, mental help in any way possible This video helped me a lot , atleast I am not alone Thank you to whoever reads this, I pray nobody ever goes through all this and it's become my goals to help people who do...🙂
I've had the same exact symptoms but my EEG didn't show any abnormal brain activity although I sat on the table during the test and couldn't stop twitching I don't know how it didn't show anything. Thank you for putting everything into perspective for me I know I have epilepsy I just haven't been diagnosed
Oh my goodness this could be me but I've been getting the other 3types of lobe areas,I've been ill since November,they ruled out epilepsy because 'with epilepsy you lose consciousness ' according to the many professionals who have seen me,I cried when I saw this clip,I had been reading up last night,I've had to give up two job and my life has changed with the professionals not knowing what's wrong with me,yet to see a neurologist I can't thank you enough I feel so lonely,my daughter is my advocate who is researching too,I hope you are doing well this was taken a few years ago,onwards and upwards beki xx
Thank you thank you thank you! I have Hashimoto and at one point I started having deja-vu all the time and blackouts and they thought that was the reason I was behaving like that. Had EEG and MRI scan and found that because of an old brain haemorrhage I now have epilepsy. I started medication, changed my diet. I'm taking Keppra but hope to stop at one point taking them. I think is really good to speak about i to people. They should learn more about epilepsy. Thank you again, and never never give up. :)
Thank you for sharing this. I somehow relate to you. I do have auras and 'blank' spatial moments. (And I'm sharing this the same I did in other youtube channels with the same topic). There are times I felt like I'm just a floating being/onlooker inside this form and I'm not really here in this reality yet it's familiar and not at the same time. That felt nauseous. I have migraine/vertigo attacks that made it worst. Two years ago I was rushed to the E.R. because I was very exhausted and probably reached a burn-out from my career and all sorts of very vivid dreams just couldn't stop my head from spinning and continuously thinking night and day. My face felt numb, my eyes very hot, unrelenting headaches, my right foot would twitch from time to time, I spoke inaudibly at times. The doctors could not even give a decent diagnosis (except deficiency, exhaustion and vertigo). I couldn't explain but it was more than that. After every attack, I feel very exhausted and disoriented I couldn't do much. But now, I am able to better manage all this - I meditate a lot and try to free my mind from thoughts whenever I can. Lots of water, cold showers and sleep in a silent dark room are very helpful. I googled and it might be related to Temporal Lobe Epilepsy or the like. You need to know your triggers. I wrote my encounters on a journal too and I tried my best after every encounter to know what might have caused it - prolonged eye-exposure to too much sunlight, too much stress, etc It's not very easy to control one's thoughts and I don't even know if it's chemical-based or not. We all have our burdens to share. I don't want others to experience the torments of my attacks but it feels somehow relieving that others are fighting just as much as I am.
I'm watching this in 2021 and I'm currently going through menopause. I have catamenial epilepsy, simple partial seizures. I was diagnosed first with absences, complex seizures, then I basically self diagnosed with catamenial when I was about early 20's. My neurologists haven't been that good. I've never been able to learn to drive which is a nightmare. I have taken lots of diff meds throughout my life, but have been on keppra and lamotrigine for many years and although they hv worked the best, i still have seizures. I have found recently that I am finding it hard to find the right words at times and also say the wrong words of recent. This is concerning but I'm staying positive hoping it will pass. I am hoping once M is over, I will become seizure free, one day. Nightmare.
I started having seizures after my first major surgery. The best way I can describe it is "being squeezed back in time thru the eye of a needle". This is in relation to the squeezing and vibrating in my brain followed by the deja vue. Ugh. In the beginning they'd wipe me out for the whole day. I couldn't respond to things around me, talking was difficult and my recall just was not there. They gave me a "walking" EEG to try and capture a seizure. I didn't have one, but on my way back to the Dr the next day (still attached) I had one while driving (a small one), because I was stressed about not "having one" to diagnose. It was enough and finally got on treatment. I'm taking Lamotragine and it has been a life changer. The only times I rarely have a seizure not is if I miss doses or go thru something very stressful. But when I have one now, I'm disoriented for maybe 15-30 minutes, then I'm mostly ok...just a little mentally slow. It's so nice to come this and know that I am not alone and that we can understand each other.
thank you so much!!!! I am currently waiting to see a neurologist because the eeg results came back with several abnormalities. thank you so much though this was very helpful and really have me hope thank you so much again. I can't say enough. thank you. I am happy for you that you are doing well now
Oh my gosh It’s nice to hear. You explained it so perfectly. A fear a fear that’s beyond explainable! That’s what I was told! I had anxiety and depression!
I was diagnosed with complex partial seizures in 2017. I was having them for 3 years prior though and went through the same nightmare. Mine are strange. I dont loose consciousness I remember everything thats going on. But I loose words to start. Like forget words. Or can't speak at all. What I want to say is there but I can't verbally communicate. Then I get dizzy and will seize up. But I remember it all. This condition is so frustrating and most dont understand at all. Lucky for me I have control of gross motor in a seizure so I can put my hand up to motion im having one.
I have this Deja Vu feeling all my life and it came with an Aura and nausea. I never cared for it until I was driving with my kids. This thing started and I got confused and didn’t know how to turn. Actually I couldn’t turn. Usually when I have it I immediately find a place to sit down and close my eyes. But it happened while I was sleeping and woke me up. I am now doing an EEG but everytime I explain to someone they think I’m crazy
![Felix "Unfair" | [Stray Kids : SKZ-PLAYER]](http://i.ytimg.com/vi/Oswujxm2Ag0/mqdefault.jpg)
I can’t stress enough how much this has helped, mine has gotten worse over the years been trialed on countless medications along with going through the diagnosis as I was going through puberty, I was so excited to start driving and going out because my mum had isolated me most of my life due to my father, so I was absolutely devastated when I had just started to get my license and then was told I was never to drive, I had to be taken out of school half way through grade 12 so I didn’t get to graduate or go to formal, which had been my dream as a kid. Now that I’m here I have a fear it’s mixed with bpd due to so much trauma throughout my life. I have a boyfriend but I feel like I’m ruining him and his life, I cry everyday especially when I wake up knowing my life has been taken from me while I watching all my peers get careers and houses and get married I’ve been stuck in a place where I can’t seem to be able to move forward, I have a job but can’t work more than 20 hours a week which turn into 16 with my 8 hour shifts. I can’t seem to get my own place as I’ve lived my life either not being allowed to move out of my parents or being stuck in a hospital. I’ve moved into a friends place now only because I ran away from home and haven’t gone back. I’ve lost all my friends due to being diagnosed and as they were still growing up and immature they labeled me as crazy and now they are so much more ahead of life that I can’t reach out.
Your life is precious regardless of however your health is.
Start doing painting, art or anything you have interest in to keep you away from stress.
If you still have seizures drink cold water immediately after you have a seizure.
If you are still unwell throughout the day, you should drink a frappe or something ice blended as this will further relax your body.
Sleep well and have your full day meals.
Always keep a cold water bottle with you wherever you go.
Watch a comedy program to reduce your stress.
Keep away from smoking or consumption of anything that affects the brain.
Avoid amusement park rides as this can worsen seizures.
Avoid being around Chemical factories.
Ask your neurologist for a medicine called lamotrigine or Lamictal as this medication is more effective to reduce seizures.
Good luck and I hope you stay well 💗
Sat watching this crying as your descriptions are how i feel during my seizures and i don't feel so alone. Thankyou x
I came across your video just now. Our stories are IDENTICAL. I was put on dilantin, Keppra, regular Lamotrigine. They did not help. Finally, my neurologists prescribed Lamotrigine ER 3 years ago, and I have not had a seizure since. I had a major car accident that I could not remember, which caused the wreck at age 24. I am now 57 seizure free. Comple partial seizures can ruin lives. Pray for those who suffer. Thx for telling your story. No one around me can relate. I feel better knowing someone else feels my heart breaking pain.
I had CPS for 20 years before they were diagnosed after I had a major single car accident. That was more than 20 years ago. Am now 61, married and my husband takes very good care of me. Thank you for taking the time to share your story. I wish you all of the best.
I have been dealing with this for 3 years. The same feeling. Some people tell me it's panic attack. I tell them no it's more than that. The way it starts I can be completely non stressed. Most the time I feel great before an episode. I will pretty much stare like a dark shadow fell over me. I realize something is going on and now that I have had enough of them I know the distinctive feeling that comes over me followed by a sense of great fear. The fear hits and shortly after my whole body will shake. During the episode it's a feeling of doom the whole time. Three things can happen during my episode.
I can stand there through the whole episode.
I can start to wander around. The urge to walk it off like I think it's gonna help but it doesn't.
I can stand and as it starts just want to sit down. Never the less the feeling and episode is paralyzing. Thought and movements even though I end up walking around.
Or do all three during that episode.
Sometimes I'll recover and and get that worry and Ill trigger another one back to back. All episodes start the same. Often out of nowhere. However so far it's always during the evening hours. Never had one in the morning or mid day. Sometimes my dog will warn me before I even get the Aura. My dog since I had my first one senses them before I do depending on where he is at in the house. If he is close to me he senses it before I do he will come over put his head on my lap and I'll try to push him off but he will resist and not budge. Shortly after that dark feeling comes over me. Then I know.... It's about to happen again. If he is not right near me or he looks over at me from across the room as the dark feeling comes over me he rushes to me and puts his head on my lap if I am sitting down if I am standing up he stands next to me with his body against my legs he never leaves my side the entire time til I recover. My very first one I was sitting down on the couch and he came over put his head in my lap. I tried to push him off and he would resist and be reluctant and put his head in my lap. Seconds later impending doom feeling came over me with this dreadful fear. Then the shakes. Lasted what seemed like more than five minutes. Didn't know what to think. Didn't know what happened thought it was a panic attack. This happened about three more times. In a matter of a week or two since the first time. The next 3 times following my dog knew before I did. After this I started to worry. Started looking into this. After my first four times I became aware and that distinctive feeling I know it's gonna happen just before it does. My dog always is by my side each and everytime.if he is near me before I start he is always there. If he is not and it starts without him he always is by me or head in lap depending on whether I am standing or sitting at the time. He has never missed one. He either is there before it starts to warn me or if he isn't in the vicinity he gets to me as it starts. I have had several in the last 3 years. Sometimes they come in waves. 2 in one week. One a week for three weeks. Go a few months without one. Then get a few more in a months time usually one a week or two a week and one in a few weeks. There isn't much of a pattern to it. Then go quiet a month or two and start again. Its very weird. Now that I have insurance I am gonna get checked out. Anyone else experience this??
Many thanks for sharing. I was diagnosed with Grand Mal seizures in 2015. Life changing, but doesn't have to define your life.
Glad to hear you doing so well.
I am so thrilled I found your video. Your story is exactly the same as mine. My primary doctor misdiagnosed me with generalized anxiety disorder and depression since I was a teenager even though I've experienced the classic signs including passing out. I've passed out, broken my nose, and got a concussion. I've passed out while driving and ended up on the other side of the road. I had to ask to be sent to a cardiologist for a year which proved nothing and they still continue. It wasnt until I had my first bout of vertigo and went to see one of the nurse practioners I work for that she finally had the chance to ask me about these issues I've been experiencing because she's heard me talking about them for over a year. She was the one that finally told me that they were seizures and I needed to see a neurologist. I called my primary doctor to tell her what was said and she got me in within a month meanwhile we did the EEG which showed seizure activity and a brain MRI. Unfortunately, the brain MRI showed lesions and early signs of MS so I had a double slam. I've had a handful of times where my seizures have led into tonic-clonic seizures which has scared the hell out of me, but luckily that is rare. The usually symptoms are the most intense deja vu followed by just a sickening level of nausea, pain up my left arm, and my vision goes out for a split second or I will pass out all the way. Afterwards I will have stroke like symptoms that can last for hours or a couple days meaning I stay in a state of confusion, I'm exhausted, I can't remember even when I'm in the middle of a sentence it's like my brain shuts down, and then there's the inability of getting the words in my head to get to mouth like the wires in my brain have been cut. Anyways, I share in your delight of finally have the right diagnosis and being able to show family and friends that I wasn't crazy! :) Thank you for so much again for posting! !
Tristan Beamis Your stroke-like symptoms..... are possibly Todd’s Paralysis ruclips.net/video/9ViqmUTa0KU/видео.html
I can relate also I don't black out or have outward signs, but people are uncomfortable with me when I don't speak well & its ruined my self esteem & the stroke like feelings afterwards have ruined all my jobs as I can't keep up. Have you been able to work? For me after many years its really effecting my mental health & learning capabilities, & I routinely get employers & family getting angry at me. Then friend tell me I have to just work harder so I leave my situation & more away... I agree I need to move away but I am not currently well enough to hold down the job. Its very very hard & its only recently I have found a supportive therapist whos doing research with my & I am saving to see a private doctor, because my GP won't take me seriously & I can't change due to location reasons but as soon as I am well enough I want to move on to a more positive environment.
thank you for sharing! I had seizures since I was little. I had no clue what was going on. I called it "thinking of weird things" and it wasn't until highschool before my mom became concerned, as the frequency was increasing and I was becoming aware that this was not normal. I was extremely shy and had severe anxiety and when I look back, I think it was all related to my seizures. I was different and no one understood. I even wondered if I was crazy or possessed by the devil. The feelings during the seizure were horrible. The deja vu was crazy, like I had access to some kind of really important information that I forgot as soon as it was over. I also felt confused afterward, once I even walked out of the restroom with my fly down - in high school! When I was finally put on medicine, I wasn't officially diagnosed with epilepsy. I was told that the EEG results showed "abnormal activity" The doc put me on anti seizure meds before I started driving. I'm thankful that it never got on my record, because I may have never been able to drive. Thank God the meds helped, but I didn't really know what was really going on until I did my own research.That's when I learned that I most likely had complex partial seizures. I took Tegretol for years.When I decided to start a family, my doc put me on high levels of Folic Acid to prevent cleft lip. My baby was fine, thank goodness. When my daughter was little, I kept forgetting to take my meds. I didn't have any more seizures (had been seizure free for years) so I decided with my doctors help to phase off of the meds. I'm very thankful that the seizures didn't return, but I'm still haunted by it. The positive spin for me is that I can empathize with the students that I work with at my job.
Hey where can we private message?
Thank you for sharing your story. you're right, even now in 2019, you can't find a lot of people's experiences with partial seizures. I came to this video after having a nasty cluster of partials that involve that same fear you described. I also remember things that make it worse and I got stuck in those thoughts tonight. I am not sure if it is deja Vu because it is not like the moment feels familiar, rather the remembering feels familiar, if that makes sense.
I think many people don't want to talk about it because it sounds so bizarre and very hard to put into words. So, I am glad you did.
I have complex partial seizures and didn't know until I was 17. I keep a log to use with my doctors. Thank you so much for this, it means a lot. I do my best to raise awareness and I think you're doing an amazing job!
Same
Hi everyone here in 2021! I cannot believe I made this video 6 years ago. Please support me 🙏 instagram.com/itsanniebean
I have been so overwhelmed by the feedback, getting all your emails and hearing how this video has helped. Just remember you are NOT alone in this, we all experience this condition differently, and we have each other. My blog www.talesofanniebean.com - look after yourselves, keep safe and let's keep spreading awareness xxx
Thanks very much for video.God bless you and your family
Thsnks very much for response) During epilepsy monitoring , EEG(BRAINWAVES) were normal, eyes were blinking or closed, shaked left limbs..But most and main argument 8s friquensy of seizures .I have 4-9 per month. Nor less neither more
Hey Annie B I was wondering do you always have daja vu when this happens?
I have been having weird sensations in my head and I have horrible migraines anyway and my body can feel so weak and weird. I will know something's not right and it's scary. I dont really have daja vu but I've gotten very confused like I couldnt hardly talk etc. Does this sound similar? I have no idea what's going on my neurologist wants to do a mri on my brain.
Hi Annie! I have had partial seizures for 40 years, and my Neuologist started me on Xcopri......a really game changer!!! Contact me if you want to talk!! Steven Harris
Yes I've had daja vu seizures it is a really weird feeling
I got diagnosed in September and it's so good to hear someone else talking about it! Especially this deja vu feeling, I find it so hard to explain to people what it feels like and how paralysing it is, the fear is so real!
Thank you for posting this video my 2 year old was just diagnosed with Focal dyscognitive seizures and it has been a whirlwind of emotions so far. She just did her second EEG and it came back confirming everything. I had to get a second opinion because the neurologist said he didn't think it was seizures and I told them I wanted another EEG I knew it were seizures and I wasn't giving up. The second neurologist listened to me and actually gave me a name of the seizure she was having and the EEG confirmed it. I'm happy to finally have answers but heart broken at the same time. I am on RUclips for countless hours trying to watch videos of others with the same seizure just trying to understand and coming across your video really brings comfort that my daughter isn't alone and if she has it while an adult she will be ok. Thank you!
I know this was posted three years ago and I don’t know if you will ever see this, but THANK YOU. I cannot describe how good it feels to hear someone else explain in their own words exactly the same thing I am experiencing.
Mate, your story is exactly like my epilepsy. I’m 43 I had my first one at 30. I’m on medication that helps and the keppra was no good for me either. I sometimes pass out but not as often now. You are an inspiration. Thank you from down under.
Which medicine are you taking now and how is your health?
In your next neurology appointment, ask your doctor for a medicine called lamotrigine or Lamictal
Good luck and I hope you stay well
Thank you Annie, for sharing your journey. I'm 61 years old and got diagnosed with focal impaired seizures (complex partial seizures) last year after a car accident (no-one injured, thank God), that got the diagnostic ball rolling. Now I'm not allowed to drive (here in NZ you need to be seizure free for at least 1 year) plus, I'm only allowed to work under supervision until 6 months seizure free which is fair enough since I'm an anaesthetist. In hindsight I likely had auras in clusters for the past 20 years. They feel like I am about to pass out, like having a faint. I crouched down immediately and this "faint" went away within seconds, as faints do. Only last year the seizures changed to impaired seizures, the first one of those causing the accident.
The diagnosis came as a deep shock for me knowing that it won't be cured, just the seizures suppressed. The memory loss is really scaring me regarding my job, I just hope it stays away for long enough so I can enjoy my work until I retire in a few years.
I am lamotrigine which so far is holding my seizures at bay.
Thank you for mentioning the “aura” or phase that seems to start all my seizures; it’s that strange feeling of “feer or panic” that brings me such anxiety. It always starts in the top of my stomach and runs its own cycle. This is the warning to me that a seizure may be on the way- so slow down a little,or even stop for the moment.
I have epilepsy too and I have both complex partial seizures and grand mal seizures, and I was diagnosed when I was about 12. I tried a lot of medication too, but right now none has helped me sadly yet... My family has also been very helpful with my seizures, but they also don't want other people finding out that I have epilepsy and sometimes it makes me very depressed that they treat me like a 2 year old when I am almost 25!! Nobody will understand what we feel like until they actually go through it themselves, and you are very lucky you have a fiance that has been there for you :)
Alina, I couldn't agree more. To be honest I found lots of comfort talking to fellow epileptics as they understand
sat here sobbing - I've spent 4 years being told I'm suffering anxiety and depression. But strangely only at night. Just been told it's Complex partial nocturnal seizures. Thank you Annie
I’m going through this for the past couple of years. Hearing your journey has been what I needed. Thank you for being so open and brave in talking about partial seizures.
I have a neuropsych appointment in March. I've been experiencing something similar to this for three years now. When it first started happening, I went to a doctor and they told me it was anxiety (I have a history of panic attacks; I know what panic attacks feel like, this is very, very different). This past December I went to a different doctor who took me seriously and got me the appointment. I am so, so ready for answers. I am crying reading this because it gives me hope that maybe I will get some real answers. Thank you so, so much for sharing.
Your story is just like mine! I was told for years that my seizures were panic attacks. The horrible panicky DeJaVu feeling followed by a feeling of fear and panic is exactly what I experienced. I am going into the Neurophisiology Monitoring Unit for a 3-5 day stay to monitor the seizures next week.
Annie, so glad I found you. Sorry for what you have gone through. I've suffered through 3 forms of epilepsy since the age of 5. Had 2 brain surgeries to help with the Complex Partial, as it was caused by a tumour, but something formed in the left side of my brain, and the neurosurgeon decided to go to Hawaii instead of doing the operation... He opened my skull, and LOL my brain burst. Coma for 6 days.. But that's another story. Look so forward to hearing from you, and sharing music !! Hugs, Seana
Thank-you for your story. I only just been diagnosed today by neurological testing including an EEG. I went there due finding out why I have cognitive decline and headaches. I was shocked to be told, “You have epilepsy .” I never had a seizure I told him. It’s not the whole brain only the back of the brain. The EEG graph was all up and down and that part of the brain has constant electrical activity. He told me you had multiple seizures during the EEG. I don’t even know what that feels like or looks like. I never even knew. He thinks I have had this my whole life. My Mum is like “Oh that makes sense now.” It makes no sense to me. Anyway, I struggling to find information on non symptomatic Epilepsy. I don’t know what to research. If you find medical RUclips videos of medical articles please send them to me. I don’t know what to research. I lived a very normal life. I am so confused to why the back of my brain has seizures and why I have epilepsy. When I function normally at work and every day life. I want to find some understanding to this mystery.
I’m 44 and had my first of eight focal seizures of the right temporal lobe and amygdala in June. Like you, everyone thought I was nuts. Heck, some people still act like it’s just a headache. Another accused me of relapsing with alcohol. Nope I’m clean as a whistle. So the doctors passed me around since the early 2000s and the diagnosis was always something to do with mood disorders. I was on a number of antidepressants, which may have provoked my first and subsequent seizures. I am now on a good anti seizure medicine that works well with my mood stabilizers. I’m sorry you went through this. We all have this thing in common and it sucks, but we’re here for each other
I've had epilepsy for years now but quietly suffered mentally through it because I don't know anyone who actually knows how it feels. Although it is different type of epilepsy and also a mild form of epilepsy in general, this video was so nice to watch. Thank you for sharing!
I have simple partial seizures with psychic symptoms since I was about 8, and I wasn't diagnosed until 19!!!! I thought I was an absolute freak and there was something wrong with me! I had an awful experience with Keppra as well. I stopped taking it after 3 days because it made me extremely tired and hostile. Thank you for making this video. I knew I wasn't alone in this, but it's nice to hear the voice of another person who is like me.
P.s. There honestly needs to be a support group or some sort of online chat for people dealing with forms of epilepsy!
Thank you for sharing I just got diagnosed and i thought I was crazy! I was "passing out" for a year and a half before getting someone to listen to me.
Thank you so much, Annie, for sharing this with us. I, too, have epilepsy, and I have had generalized seizures along with focal seizures (including both simple partial and complex partial). I really hope that things will get better for you. If anything, you can comfort yourself knowing there are many of us out here who have to deal with the same kind of thing as you. ;) Take care!
Doctors wrote me off for a long time. I was told I was having panic attacks. It is hard to get a diagnosis. This is exactly what happens to me. They got much worse during a particularly stressful time in my life. I was finally put on seizure medication which has helped tremendously.
Thank you soooooo much. I have a similar story and I’m glad I’m not alone. No one understands these seizures and when I’m try to explain what is happening to me I can tell they don’t believe me because I stay conscious and can still talk. But my mind is in a state of super daydream and out of body. I have to focus so hard just to function. Comes on instantly and fades in about 15 minutes. I have been diagnosed with complex partial seizures. Thank you again! Kathryn
thank you so much for this. my 4 year old has complex partial seizures and it's really hard to understand what she's going through. she's 4 so she can't articulate it very well. this really gave me insight into what she might be feeling. thank you!
Thank you for posting this. I was just diagnosed with complex partial seizures by my primary doctor and I am seeing a neurologist at the end of the month. There's a lot of uncertainty and I'm currently not on any medicine for it. I had my first big seizure last night - complex partial switched into tonic-clonic and I kept on falling in and out of consciousness. Went to the doctor today and she said it was a psychogenic non-epileptic seizure, but last night I was given Neurontin and it helped. So it is definitely epilepsy.
Thank you so very much,I have seizures,,,i had a bad fall 13years ago with a brain injury,,it’s hard some days,,,after watching your video,,,i dont feel so different now,,,Sandy 😢💕
Thank you so much for sharing I also had the run around for a few years but thankfully I was finally diagnosed with temperal lobe epilepsy. I have not been fortunate enough to get control but I have learnt my triggers so if I look after myself they reduce. I am now in my late sixties and I find it much harder to recover and my memory is getting worse. Hearing you wonderful people is so wonderful and I dont feel so alone.
Hi Annie thank you for posting this your videos that describe your seizures are much like what I am dealing with! I deal with the shame and embarrassment. The doctors keep telling me that it’s this that every time and it’s annoying.
I can't thank you enough. I am a doctor and have been suffering with these seizures. I was great to listen to you. I feel that I have talked to someone who os just like me in a casual way.
My Grandmother has epilepsy and I have been diagnosed with panic disorder. Now we are doing more test, I go for my EEG tomorrow morning. I pray it is epilepsy to be honest, I can't keep living in this hell. Thank you for this vlog, I appreciate you.
Hey Brooke, how did you get on?
@@AnnieBean thanks for your video!
I have an EEG 11.30, and over 20 years post meningitis and being misdiagnosed since 14 years old... I would love to know how to prep for the eeg.
Took Anti depressants, made me wired in college, anti psych gave me severe faint spells (narcolepsy and absence seizures is what they tried to say I have 2 months ago, suspended my DL and just said to try melatonin which doesn’t help me get quality rest as klonopin did. No medication and no license due to a seizure disorder.. too long of a story 😎)
I had seizures every car accident I was in, and the one when I was 17, I am grateful I didn’t hit anyone.
Malpractice is very unfortunate and I am looking to shoot a docu series early next year, as my former colleague would like to produce my story.
It will be positive, as I too, am very content, not depressed lol
Please let me know if you would like to schedule a zoom call with me.
I wish you a very happy thanksgiving and praying this eeg goes ok next Monday.
I believe it’s epilepsy and narcolepsy due to my symptoms.
Nikki ❤️🐶
I'm suspected of having a complex partial seizures, but no one is sure yet and I just... I'm afraid but it's only a guess I may have it. I've done quite a big research and I'm so happy to find this video - most vlogs are about "stereotypical" (I don't feel like it's a good word but I have no idea how to say it) epilepsy with petit and grand mal seizures and here you talk about something I may be going through. I still don't quite get it, especially because I do not black out - I just zone out for HOURS, with my mouth dry and my eyesight being worse than usually, with me being able to do things, but doing them just feels like it's not me doing those, but only my body (still don't know how exactly should I describe it) without my control. I can't focus, I don't understand what I read, I don't know what words are coming out of my mouth. I just don't know what's going on around me, but as I said - I've never blacked out, I always remember what was going on (after the feeling is gone) and I just hope it's not epilepsy. And for sure it is not some kind of mental illness. Sorry for such a long comment, I just needed to let everything out, because I'm simply scared and also very happy I've found your video talking about complex parrial seizures. You did a good job and I wish you the best!
You should look into depersonalization and derealization disorder! Sounds like what I go through! Also a symtom of siezures
Have you checked with a neurologist ?
Do you have severe pain like electric movement in part of your brain & does your body become stiff ?
Thank you for sharing. This truly was helpful and touched my life and it’s rare to find someone who talks about this online. I need more positive faces like yours to encourage and be honest about triumphs. Yet, you continue on. I am now subscribed here in America!
Thank you. I don't know if this is my experience, but your story sounds so familiar, and whatever it is, I feel less alone. You are brave and wonderful for your openess.
Sitting here watching this video with my 12 year old who we think has been having CPS, which have presented like panic attacks. This last one was the worst and we are researching the heck out of it. So grateful to have found this video, I smiled and cried for my baby girl. Thank you from the bottom of my heart for sharing your story.
Thank you for sharing. I am 15 and have a very very similar story, I was also had a bad reaction to kepra ( i don’t know how to spell it). And they think I have been having complex partial seizures but on this last New Year’s Eve, I started having myopic seizures so now I have both and I was finally diagnosed with juvenile myopic epilepsy. Hearing someone with a story similar to mine is super helpful and makes me feel less alone. Thank you
I'm so glad I came across this . I appreciate someone else talking about a journey I went through. Good job explaining how it feels. FIrst time I heard someone talking about seizures the way I experience them.
My daughter is 5 and was just diagnosed with complex partial seizures and this was very helpful.. thank you.
Just received a diagnosis today after 2 years of being told I wasn't worth doctors' time or they were just panic attacks. It seems really scary and I know there's a long road ahead, thank you very much for sharing your story and giving me hope for my future.
Thank you for this video! I have had this go on since I was very young never understood it. My boyfriend gets very concerned for me and started looking into things and I believe I have it. I know it and I want to get a diagnosis now. I genuinely thought I was the only one and there was something wrong with my mental state even though when I’m not having them I have no other problems. This video gave me so much reassurance so thank you x
I want to say thank you for this video! I was diagnosed with Complex partial seizures and I am trying to gain more information on the subject. I have my own fitness company maybe I hope to one day use my company to raise money for epilepsy research. Y.A.M.S. Fitness it stands for You're Always Motivating Someone. Thanks agai n for sharing your journey. I hope I can be as brave as you one day!
I’m going through the same thing. ❤️ Thank you for sharing.
THANK YOU SO MUCH FOR THIS. I have all the symptoms and I’ve been diagnosed with BPD and major depression with anxiety. My whole life I’ve felt like a mess and I’m on tons of medication. You’ve helped more than the tons of doctors I’ve seen!
I have the same kind of seizures, and have struggled for years with Doctors and ER personnel telling me I'm "mentally ill," "panicking," "faking," etc. My housing and job were on a month-to-month basis, and when my license was revoked last month I lost both (housing/job). I live in a rural area with no disability resources, and have unsupportive parents who don't care to look into epilepsy/seizures, etc. It's been an incredibly difficult journey, and it's far from over. Looking forward to the validation of my EEG at the end of the month. :) Thanks for this video.
Thanks for your comment. That is quite a story - are you any closer to finding out?
Thank you for doing this video. I have recently been diagnosed with complex partial epilepsy and you have helped clear a few unanswered questions for me. Much love
I just recently got diagnosed with partial complex seizures 3 months ago and you described EXACTLY what I went through! I'm so glad you shared your story and I know that I'm not alone in this battle. I wish you the best and may we fight this battle together!
Although this was posted more than 2 years ago, I truly thank you for your video! It helped me immensely! I believe you can imagine how much this helps me seeing that you also felt confused and alone! Thanks dear!
Roelanie Botha thrilled it has helped you xx
Great video Annie. And you are so right about turning what seems negative into positives. I was diagnosed in my early 20s and was just going to university, so lost my licence too, but ended up doing a lot of cycling and also did a triathlon! Now driving again, but still keeping active and positive. Keep up that great attitude and keep sharing :)
Thank you soooo much! I have epilepsy as well and was on Kepra,now taking Lamictal. Covid has taken me back a few steps. I believe its from being rundown and stress.
I have complex partial seizures and I've been having them for roughly 4 years and I haven't been fully diagnosed yet cause my doctors keep trying to avoid epilepsy but that's what it is. I've had more than 100 a year and it's nuts. Epilepsy really sucks and it is scary. I'm on Keppra right now and it's not working but all my family and friends say I'm just being stupid but I know it's not. I'm glad I finally found someone who can finally say it too so I can prove I'm not being stupid.
And I also have grand mal and absence seizures but most of the time it's complex partial. I've have 3 in a row before and it was terrible. Plus recently they've been getting so bad, I'll wet my pants and I can't stand it ☹️
loved watching this. I recently celebrated 2 years seizure free, and I just posted a video to spread awareness! Keep it up :)
Yay! That is awesome news!
I'm hoping one day I can celebrate this milestone with you! Has it been 4 years now?
Please bcause you can maybe help us,
Awesome! How’d you get them to lessen and eventually stop?
The drs. Couldn't help me. I have a similar story. I appreciate you telling your story. I have been managing it with a keto lifestyle. And I will back you up on the devil pills.
I see myself in this story... thanks for sharing #fightepilepsy
:) thanks for your comment x
Thank you. The way you described going through the steps leading to your diagnosis and then coming to grips with the changes needed resonated with me. Especially appreciating things in a different light. Much appreciated. Cheers.
Thank you for this video ❤️ I have been having what I thought were dizzy spells, or even early menopause or something but I finally had one around a coworker and she’s the first person to mention seizures. My doctor initially thought anxiety; I went to the ER due to the severity of one and she thought it was just because I was hyperventilating. I am upset that doctors don’t think of the possibility of seizure activity but am so relieved that I’m not alone. My friends and family have suggested anxiety but I’ve had anxiety and depression since my teens and they have never inhibited my ability to move, talk, or hold things. Thank you! Thank you! Thank you!
Thank you so much for doing this video. Im currently going through the diagnosis process but with simple partial seizures...and getting a lot of push back saying they are panic attacks...which I know they aren't. I'm just waiting for a prolonged EEG and kind of hoping something gets proven as its better than limbo! Thanks for sharing x
Bless you sweetheart I have exactly the same they only realised after constantly saying ‘ Depression ‘ exactly what I had was when I had a huge fit and was told I had an ARTERIAL VENOUS MALFORMATION. In my left temporal lobe
It’s hard to explain to people about our fits and you explained exactly how I do so you done well I understood what you meant.
This also affects my short term memory so I don’t even remember if I’ve had a seizure.
Fair play to you x
I’m going through this right now and it is beyond terrifying. And hearing “it’s anxiety” or you need to see Psyche first if you are becoming overwhelmed with feelings of dread during these “episodes”. It’s so disheartening.
Bless you for sharing this helpful information with those who suffer in the shadows!
Thank you so much for this video Annie. I have suffered from Simple Partial Seizures since I was 12. I had a Complex one about 12 months ago and subsequently lost my licence too. I would have been allowed to drive again next month but today I had another Complex Partial Seizure at an exercise class too....your auras sound VERY familiar and like yourself, I hate hate HATE the fear/terror!! Listening to you, I will do my best to try and adjust to this new development. Thanks again :) x
How do your Auras of fear feel like how long do they last and what happens after?
Thank you! I'm a med student and I was trying hard to understand this and your description really helped. :) all the best.
This is me!! Thank you for making this video ! I feel less alone and found nothing on complex partial seizures except this. I was diagnosed a few months ago amd was on keppra too ! It was the worst drug ever and now I’m on lamaotrogine I hope it works. Thank you
I enjoyed listening to your video. I also have epilepsy. Thank you for your story.
Oh, thank you so so so much. I was diagnosed with epilepsy in January and I've felt completely alone and scared. This is so eye-opening and I relate to so much. Thank you.
Thanks Anna, how are you doing now?
This describes how i feel and the things you've said, I also have. The neurologist thinks they are anxiety, but they don't seem like that to me. I had a clear MRI and CT scan. I am awaiting an EEG and am anxious about the results...
I have a long story which I won't go into too much detail over, but I have this but have not been understood by those around me & have lost jobs, been treated badly by family, & have wasted years in a depression & anxiety state believing I was mental & also a bad weak person. I hope the drugs will work for me, starting them this week. I am anxious about their effects on cognition & work recall as thats where I already trip up & get mocked for. I've been bullied & casted out my entire childhood for being 'always ill' & a 'bit weird at times' but when I explained what I was feeling I was always told 'theres nothing wrong with you its all in your head', which is such a bloody hypercrital line! Anyway, my experiences with others has not been helpful, & I really hope the drugs work so I can be well enough to improve my life quality & networks to more positive places. Has anyone else experienced this? Negativity from others that has just lead to more stress, more seizures, & more handicap? Did you manage to get out & turn your lifes around once the pills kicked in?
Thank you for sharing this! Our little one is 10 months old and it’s hard to understand what he is going through since he can’t describe it. This was very insightful. I hope you’ve reached the ever reached for “ 2 year seizure free” mark!
Firstly, I can't say how amazing this video is and how much you have just helped me. It's currently 5.40am where I am, and I'm sat in a hospital bed having took an episode earlier. I've never felt so much relief to see that these episodes are not just in my head. Ive had doctors telling me it's just panic attacks etc. In my gut I've always felt it wasnt, and that it was something more. I'm hoping when the doctors are round in the morning I can explain now how similar my symptoms are to the ones you've just described. Wish me luck!
Even now I feel like I'm going mad with the symptoms, like I'm imagining them... even now! I have them in my sleep too but exactly like this. It is so strange and so hard to describe to anyone. Its like a fear but a different kind of fear and feeling that doesn't pop up in any other part of life. Like a new emotion. I'm so pleased this has helped you, don't let it box you in you can still live a great life with the condition. I'm up mountains, doing triathlons... honestly getting through diagnosis is the hard part but once you're through, you can start your new chapter. Sending a big hug 🙂♥️ I'm always sharing over on my Instagram instagram.com/itsanniebean
I ha e a nearly identical story. Started having these episodes (extreme feeling of doom). Doctors blamed anxiety but eventually was diagnosed with complex partials. Neurologist put me on Keppra and it was terrible!! Then switched me to Lamotriguine and it works great. I hope you're doing well. Thanks for sharing your story!
Thanks Billy. Well we clearly are alike! Pleased to hear you're doing good!
I too have Partial Complex seizures. Started with Kepra and it made me very angry and uncomfortable all yje time. Now take Divalproex which I tolerate well. I was allowed to drive again after six months without a seizure.
Thank you for your video. ❤️
How are you doing now? I've also been suffering from this for 16 years. Still not controlled. And yes, people are so ignorant and unwilling to understand. Thank you for this video! Your right. No one really talks about complex partials.
Thank you so much! Yes googled the lot and never found my symptoms. Swallowing sleep seizures are so scary.
Thank you so much for taking the time to put this up on video. Our Dad has been diagnosed with complex partial seizures....difficult to get the diagnosis and even more difficult to understand. It’s been great to hear about your experiences. Dad is on Keppra. Take care and best wishes
thank u for putting up this video it help me out. the way u expand the start of ur complex partial seizures explained a lot because that's how i feel when one coming on. for a long time i thought it was only me having those kind of partial seizures
I was diagnosed with simple partial seizures after having panic attacks, migraines, vertigo, derealization, cold sensations at the top of my head nearly everyday. I am scared to try Lamictal. I’ve been taking vitamins but will try my new med soon. Thanks for your story. I was told I needed antidepressants, too.
Wow this means so much to me. I’ve never heard anyone talk about this and I feel so heard. Thank you so much for making this ❤️
Thank you for posting this video. Not just for me but hopefully this will help my family and friends to understand. I have multiple different types of seizures I deal with Complex Partial Seizures just one of them. I was told for every they were episodes. I had my primary assistant tell me I was severely depressed. I am lucky and have a dog who would tell me upto 2 hours in advance I would have an seizure so I wouldn't leave the house. This day my emotions kicked in and I had one at the office. My chart still referred to depression 😕. Luckily my neurologist and my main primary knows what's up.
Thanks for sharing! I am very similar and my doctor kept telling me it was panic attacks till one night I actually had a proper full on seizure and woke up on the bathroom floor , bitten my tongue so badly and the fall had very nearly broken my arm. Only then they listened! I'm now also on lamotrigine and it's lessened the ones I call my "head attacks" but still trying to get the dosage correct for me.
The feeling of sudden extreme fear you described is EXACTLY how the mini ones make me feel but I'm able to talk and function and yes, nobody would know I'd had one.
I am in the process of testing now. (Soon I will have a 24 hr EEG) I am glad someone else feela the way I do. Thanks for sharing your story!
Hope it all goes well. Just remember this doesn't have to limit you and there are many of us who have the same thing - you're not alone x
Thank you! Im a complicated case. I took an EEG and it was abnormal. My brain waves spiked. I took another 16 hr EEG and my spells did not show up high enough. The doctors said it is not epilepsy or seizures. For now they call them non-epileptic episodes.
Official Diagnosis PNES
Incredible story! Since you shared your story, I might as well share mine.
I have epilepsy - simple partial seizures, and they are very similar to what you were having, except for the fact that I can communicate with people during one. I can tell people if I am having one and they won't know if I have one unless I told them or I made a dramatic scene (such as falling). My auras last 5 seconds before I get one, so I really have not time to think about where I am going to go to have it. Sometimes, I have mini auras, which are auras where it doesn't lead to a seizure. The feeling begins in my head and goes toward my right knee.
Funny thing is I was operated on to remove these over a year ago; they went away for a year and came back. The medication I am currently on is Kepra and Clobazam (if I went off the clobozam then I would return to Grand-mal seizures), and they don't have any affect on my treatment.
So this is my story.
Wow that's quite a journey. My auras last around the same time. How are you getting on now?
I am on a new medication called Lacosamide, and they seem to do the job. I still get them at night every so often, but I feel much better. Thanks for asking :)
Similar story here. 15 years living with misdiagnosis- anxiety & panic attacks. I have simple & complex partial + started having nocturnal tonic-clonic in Feb '15. For years I'd wondered why my panic attacks were different to other people I'd spoken to.
One day I explained, to maybe the 4th psychologist, what I felt when having a panic attack and how they'd changed over the years (including a few auras). She looked me in the eye & said ' I don't think you're having panic attacks'.
I was diagnosed in Nov '15. Keppra also depressed the hell outta me & I've switched to lamotragine.
I'm still having seizures as often, but they're not nearly as bad as they used to be.... More tests & I'll know how we're moving forward with is.
All the best. Thanks for sharing 🙂
Omg, the entire video I just kept nodding my head in agreement
Hi, I would like to start by saying this , in my life , is the most relatable video ever, ever
Here's my story
So, at the ending of my 16's , one fine day, doing my physics homework ,I suddenly lost connection for a moment , it was like being here, then a monent of your life is missed, like skip in a beat then normal again, and the only thing I thought was "What just happened "
Then I turned 17 and now these blankness thing started to occur more frequently and I started to feel them coming, I tried to distract myself in many ways possible, sometimes I could , other times couldn't, so i used to go blank and then it felt like being unconscious/unaware then when I returned to my normal self I used to forget what I did the entire day, but on trying i did recall it back, sometimes it happened so much by the end I had terrible headaches ..and the entire feeling was the most horrible in the world and the worst part was I couldn't even properly describe in words what happened, because it's a feeling...
From my childhood I dud have anger problems, then weird social phobia like for every single thing I felt guilty, and was and am still very very scared of doctors and sharing my symptoms were the most scary thing ever with them so I didn't go..
But I was desparate to know wgat was happening to me,I searched everywhere on net , but since I couldn't exactly describe what I was going through, i didn't get the answers , once I was told maybe it's depersonalization disorder , so I thought maybe...
Fast forward to 2 years, 2 weeks after my 19th birthday, Though I don't remember any of it, only felt like waking up from a deep sleep and my mother and sister sitting beside me, but I got to know I had a fit/tonic clonic convulsions, my sister saw it since we sleep together, and called for my mother, I bit my tongue, my llips turned blue etc..
I felt confused and disoriented the entire day
Noe, I couldn't avoid hoing to doctors, they heard everything and suggested an MRI with a dye
It was absolutely normal
We then went to neurologist, she heard me and said it maybe Juvenile Absence Epilepsy and started me on levera(same as Kreppa)
Now that moment I felt, finally after years of searching ...this is what happened and it didn't matter what i had just I wanted relief and treatment...
Then intially my meds worked well, i did have aura but not beyond that , 2 weeks later Iam facing symptoms of depression( this I feel having from when i was 18), panic attacks extreme, fear extreme, and my seizures(absences) are worse , so many together, and with a weird intensity,
Later , I did feel scared, scared of society treating me differently, scared of sleeping, going to bathrrom, college, thinking what if it happened in front of everyone,
I thought once i get the meds things will start improving but no... , I hve to face more side effects of meds now..no energy, appeptite etc...
Also it's hard for my mother to accept it, i can't explain my feeling to her , what I feel during the seizures, and also my eeg report was normal, so...
I am 19 now, I am currently having my uni exams, i study microbiology
Honors, I am done with 2, and the moment my exams are over, I am going and taking both physical, mental help in any way possible
This video helped me a lot , atleast I am not alone
Thank you to whoever reads this, I pray nobody ever goes through all this and it's become my goals to help people who do...🙂
I love your positive energy, and enthusiasm. Keep going!
I've had the same exact symptoms but my EEG didn't show any abnormal brain activity although I sat on the table during the test and couldn't stop twitching I don't know how it didn't show anything. Thank you for putting everything into perspective for me I know I have epilepsy I just haven't been diagnosed
Oh my goodness this could be me but I've been getting the other 3types of lobe areas,I've been ill since November,they ruled out epilepsy because 'with epilepsy you lose consciousness ' according to the many professionals who have seen me,I cried when I saw this clip,I had been reading up last night,I've had to give up two job and my life has changed with the professionals not knowing what's wrong with me,yet to see a neurologist I can't thank you enough I feel so lonely,my daughter is my advocate who is researching too,I hope you are doing well this was taken a few years ago,onwards and upwards beki xx
Thank you thank you thank you! I have Hashimoto and at one point I started having deja-vu all the time and blackouts and they thought that was the reason I was behaving like that. Had EEG and MRI scan and found that because of an old brain haemorrhage I now have epilepsy. I started medication, changed my diet. I'm taking Keppra but hope to stop at one point taking them. I think is really good to speak about i to people. They should learn more about epilepsy. Thank you again, and never never give up. :)
Thank you for sharing this. I somehow relate to you. I do have auras and 'blank' spatial moments. (And I'm sharing this the same I did in other youtube channels with the same topic). There are times I felt like I'm just a floating being/onlooker inside this form and I'm not really here in this reality yet it's familiar and not at the same time. That felt nauseous. I have migraine/vertigo attacks that made it worst. Two years ago I was rushed to the E.R. because I was very exhausted and probably reached a burn-out from my career and all sorts of very vivid dreams just couldn't stop my head from spinning and continuously thinking night and day. My face felt numb, my eyes very hot, unrelenting headaches, my right foot would twitch from time to time, I spoke inaudibly at times. The doctors could not even give a decent diagnosis (except deficiency, exhaustion and vertigo). I couldn't explain but it was more than that. After every attack, I feel very exhausted and disoriented I couldn't do much. But now, I am able to better manage all this - I meditate a lot and try to free my mind from thoughts whenever I can. Lots of water, cold showers and sleep in a silent dark room are very helpful. I googled and it might be related to Temporal Lobe Epilepsy or the like. You need to know your triggers. I wrote my encounters on a journal too and I tried my best after every encounter to know what might have caused it - prolonged eye-exposure to too much sunlight, too much stress, etc
It's not very easy to control one's thoughts and I don't even know if it's chemical-based or not. We all have our burdens to share. I don't want others to experience the torments of my attacks but it feels somehow relieving that others are fighting just as much as I am.
I'm watching this in 2021 and I'm currently going through menopause. I have catamenial epilepsy, simple partial seizures. I was diagnosed first with absences, complex seizures, then I basically self diagnosed with catamenial when I was about early 20's. My neurologists haven't been that good. I've never been able to learn to drive which is a nightmare. I have taken lots of diff meds throughout my life, but have been on keppra and lamotrigine for many years and although they hv worked the best, i still have seizures. I have found recently that I am finding it hard to find the right words at times and also say the wrong words of recent. This is concerning but I'm staying positive hoping it will pass. I am hoping once M is over, I will become seizure free, one day. Nightmare.
I started having seizures after my first major surgery. The best way I can describe it is "being squeezed back in time thru the eye of a needle". This is in relation to the squeezing and vibrating in my brain followed by the deja vue. Ugh. In the beginning they'd wipe me out for the whole day. I couldn't respond to things around me, talking was difficult and my recall just was not there. They gave me a "walking" EEG to try and capture a seizure. I didn't have one, but on my way back to the Dr the next day (still attached) I had one while driving (a small one), because I was stressed about not "having one" to diagnose. It was enough and finally got on treatment. I'm taking Lamotragine and it has been a life changer. The only times I rarely have a seizure not is if I miss doses or go thru something very stressful. But when I have one now, I'm disoriented for maybe 15-30 minutes, then I'm mostly ok...just a little mentally slow. It's so nice to come this and know that I am not alone and that we can understand each other.
Thanks for sharing this. Have these too and hopefully will make epilepsy more understanding to others too
thank you so much!!!! I am currently waiting to see a neurologist because the eeg results came back with several abnormalities. thank you so much though this was very helpful and really have me hope thank you so much again. I can't say enough. thank you. I am happy for you that you are doing well now
Oh my gosh It’s nice to hear. You explained it so perfectly. A fear a fear that’s beyond explainable! That’s what I was told! I had anxiety and depression!
I was diagnosed with complex partial seizures in 2017. I was having them for 3 years prior though and went through the same nightmare. Mine are strange. I dont loose consciousness I remember everything thats going on. But I loose words to start. Like forget words. Or can't speak at all. What I want to say is there but I can't verbally communicate. Then I get dizzy and will seize up. But I remember it all. This condition is so frustrating and most dont understand at all. Lucky for me I have control of gross motor in a seizure so I can put my hand up to motion im having one.
I have this Deja Vu feeling all my life and it came with an Aura and nausea.
I never cared for it until I was driving with my kids. This thing started and I got confused and didn’t know how to turn. Actually I couldn’t turn. Usually when I have it I immediately find a place to sit down and close my eyes.
But it happened while I was sleeping and woke me up. I am now doing an EEG but everytime I explain to someone they think I’m crazy