I'm a 19 year old guy with a very rare autoimmune brain disease that causes seizures and weakness of one side of the body called Rasmussen's Encephalitis. I've had 2 brain surgeries that left me with a 13inch scar, chemo, dozens of meds, and I'm s...

What is it like to have a siezure? How can people best help you when you are in the middle of a seizure?

It's not fun at all. There are many types of seizures. I believe I am having them in my sleep, but I mostly have them while awake. It's a feeling like no other, to have no control of your body. At first it starts off with really hard jerks to my left, my head twists jerks and jerks, then as it progresses, the jerks get smaller and my body begins to "vibrate" or seize up. Before I used to lose conscious. Now I am fully awake. I see, hear, and feel everything. everything is blurry because my eyes are rolled up into my head and vibrating. I can hear my parents trying to calm me, I hear myself gasping. I cant breath. I feel like, electrical pulses running through my body. After about a minute, it's over. And let me tell you, that minute is hell. And feels like years. I am exhausted. You will never ever ever be tired until you have a seizure. God forbid. So tired I can hardly blink I kid you not. I am hyperventilating super fast and short. No matter how much I try, I cant fill my lungs. Im like, limp. And still feel like pulses of electricity running down my right leg and arm. My left leg and arm are literally paralyzed after a seizure. 100% 0 feeling. cut it off and I wont feel a thing. As if I had a stroke. my left hand is clenched shut so tight. I have to wait about 5 minutes until I can start moving my foot and hand again, and massage my left hand open. If i dont keep my nails cut, they will tear straight through. After, I have extreme nausea for like 30 minutes. Then a pounding heading for about 3 days. This doesn't even come close to explaining what it actually feels like. Its a feeling like no other. I'm afraid I'm going to break my thumb one day break during my seizures, my fingers squeeze down on my thumb. My toes also curl extremely hard, to the point were I cant walk for a good while because they are so sore. Every single muscle in your body contracts as you have an electrical pulse racing through it.

And the best thing someone can do is protect the head and hold them on their side. Do so to drain any spit. So they don't choke on it. Don't hold their arms or legs and try to stop them from seizing. It really hurts. Let them be. It will pass. Unless it passes 4 minutes don't call 911. just adds hospital bills. Unless you know they don't have a history of seizures. And never put anything in their mouth. That's a myth. It will break their teeth, make them bite off their tongue or bite off the persons finger, if they are dumb enough to do that.

Good advice. I'm an epileptic (since 15, now 24,unknown cause) I have to explain to so many people that no, someone seizing will not swallow their tongue and to NOT put things in their mouth, just roll them on their side. I was able to explain it pretty well to my bf, he witnessed two seizures of mine and he followed what I said, took very good care of me. Although he did still take me to the er each time. Do you get the whole 'God damn it I seized again' reaction when you wake in the ER? Also, do you have mainly a specific type of seizure? I'm all over the board, from absence to partial complex to tonic clonic (formally known as grand mal) have any meds helped you? I've been on 4: trileptal, lamictal, gabapentin and keppra. The keppra has worked best for me, 3000 mg daily. Sorry for all the questions, feel free to not answer them if you don't want to, I just rarely come across others who have epilepsy and other medical issues (I'm also a liver transplant recipient) so meeting younger people who've been 'sick' during their teen years is nice to find commonalities and to make new friends that 'understand' literally not just figuratively.

Almost 10 years and still unknown? Man these things suck...Yeah a lot of people will freak out when seeing someone have a seizure. I kinda don't blame them, it's not a pretty thing to look at. My gf of 2 years witnessed a couple of my seizures and she took very good care of me as well but we split this February mostly because of my condition :/ I've only been taken to the ER one time for a seizure and that was my first. Because, Well I randomly had a seizure at the age of 15. And I have Grand mals. But I never lose consciousness. I see feel and hear everything. It's horrible. I feel like I'm on the brink of passing out sometimes right when the seizing stops. Probably from lack of oxygen I'm guessing. I also have simple partials, where again Im awake but just one side of my body is jerking constantly really hard and fast. And daily, maybe 50+ times a day, I'm just twitching here and there. You wont notice it unless you really look. Although some of them are really big, hard twitches. More like contractions, then release. My hand or fingers would quickly shut, my leg would pull in, neck would twist, peck would flex, butt cheek would would contract and release, or just a whole body twitch like if someone scared me. Idk what thats called. I just call them twitches. Meds haven't really helped I guess. I mean idk if they are doing anything now. I could stop taking them today and have 100 seizures tonight. So they might? But as of now, they havnt done much. I am currently taking Tripeptal, Captopril, Topiramate, Vimpate, diazepam(as needed), and Midazolam(as needed). I am also taking a round of Immune globulin once a month by IV. I even took 2 rounds of chemo! And keppra is a no no for me! That was the first med I was given and I started thinking suicidal. It was at the beginning of all of this so I thought my life was over anyways. I was taken off of that and got help. That med didn't work for me anyway. I know what you mean about understanding. And you should check out /r/epilepsy theres quiet a bit of us out there.

Also I've only had two seizures where I was conscious. I usually always have tonic clonics where I fall down and black out. And they come in pairs nowadays, one right after the other, so that's why I end up in the ER for them as my neuro always says to call 911 if I have more than one. Damn. I had a petit mal once where everything was blurry and I didn't know where we were. I can't imagine what being conscious during one would feel like... Have you found any good ways to treat the day post seizure body ache? I always feel like complete crap the next day...

Were you conscious during your petit? Like trapped in your head? Honestly I'd rather pass out. Because it hurts. Really bad. I guess the only good part about it is, that my parents know I'm here and don't have to wait for me to wake up. And have that fear if I wake up from unconsciousness. :/ And not really, I just power through it. My body is really sore for the whole day. Especially my feet. My feet hurt for like 2 days because my toes curl down so much. And I have a bad headache for about 3 days. And God the nausea after my seizures are terrible.

Yeah I was conscious but everything was blurry, like how I imagine being really drunk is (I don't like alcohol and have never been drunk) I remember my mom introducing me to her friend, this friend was wearing a pink hat. I remember a pink blur and 'blurry' sounding noise. I asked to go home and my mom noticed I was having trouble walking. On the ride home I kept asking where we were and they figured out I was having a seizure. Told my neuro and he said it was a either a partial complex or petit mal. It's all hard to remember though. Whenever I seize since I black out so it takes chunks of my memory, so like an hour or two before the seizure, the post ictal stage being like 2-3 hours and then about 3 hours after... So usually I don't time meet much of the day.

During my seizures everything is really blurry most likely due to my eyes seizing up and shaking as well. I was "drunk" once. Over lapped my pills. took them too late one night, to early the next morning. That morning everything was moving had double vision like never before, tongue was super slimey, could hardly walk. Like legit looked like one of those old drunk guys falling over on tv. Except I didn't fall. Im quite physically fit so I have good balance. I tried drinking water to pass it, nothing. Tried eating, threw up. Was literally the first time I threw up in my life. I kid you not. But my mind was still there. I was perfectly fine inside, just my body. To the hospital I went. Almost overdosed on my own meds.

Can confirm. 10 years with epilepsy, two craniotomies (one this past July), no known cause. Seizure reduction so far, but no seizure freedom. Luckily my seizures only last a few seconds and I do not lose consciousness.

And I just want to put out there that this guy is right about not calling 911 unless truly needed, an ambulance ride can cost hundreds if not a $1K+ depending on how far you are from a hospital.

Also adds to the unwanted attention

Oh God... I hate having them on campus because everyone stops and are like "hey, are you okay?" And I can't speak clearly for several seconds up to several minutes. So I just say "I'm good" or "I'm okay", in hopes they don't call campus security, because all they do is call the EMTs. Campus security and I are good friends because we've had this happen many a time.

It's good that you are friends and they don't constantly call 911 saying there's someone here having a seizure instead. Just give everyone a thumbs up lol

I definitely have the thought of 'Fuck I seized again'. I was diagnosed out of no where in 2011 after driving half a mile unconscious having a complex partial seizure. From there I started having tonic clonic as well. I've gone into status epilepticus on multiple occasions too and recently got in a fender bender cause of one. Damn convulsions. Mine are oftentimes in my sleep and happen alot when I'm waking up. They definitely make me nauseous and hibernate for hours. The worst is the headaches and being sore for days. This shit does suck. I find myself very embarrassed since they happen in public sometimes. I will never get used to waking up staring up at a crowd of faces.

you're aloud to drive? Hell I'm 19 and still not aloud to take out my learners permit.

When you say protect their head do you mean cover it with your arms? Also, what do you mean by putting them on their side, and how does that help?

Protect their head because when someone is seizing, depending on who they are or what kind of seizure they are having, their head can be shaking and thrashing around. So Just simply hold onto it so they don't smash it against the floor, or a table, etc...and when they are on the floor, which is where they should be, or a bed, you know, wherever, try to maneuver them as best you can onto their side. Because they may produce a lot of spit. And if they are on their back, they can choke on their spit. If they are on their side, it will pour out of their mouth. Some people get sick and vomit after a seizure. Again, they can choke on their vomit. When putting them on their side, try not to pinch their arm under them though..any restriction while having a seizure hurts.

Ah ok. I don't know anybody that's prone to seizures, but who knows? Maybe this information will help me save somebody's life some day.

I'm glad I could help! You never know what tomorrow brings.

I'm so sorry, I can't even imagine going through that.

It's so intriguing though, the different types of seizures. My friend is epileptic, and one time we were standing around the piano, he was playing and a group of us were singing. Then my friend started playing the same chord he was on, over and over, in rhythm, for about 15 seconds, and wasn't responding to us asking what he was doing. After awhile, he stopped, blinked and casually said, "oh sorry, I just had a seizure," and started the next verse.

I find it interesting how horrific a seizure is to you, but to my friend, it's no big deal, but still call it a seizure. A lot of your answers are about your experience having a seizure, but what is the medical definition of a seizure and what characterizes it?

A seizure is uncontrolled electrical activity in the brain. Synopsis gone crazy. It can produce muscle convulsions and contractions. Thought disturbances, or a combination. Some even soil themselves during a seizure. It all depends where that electrical activity is. Synopsis for example, when you blink your eye, it literally makes a like a teeny tiny static shock in your brain. Thats synopsis. Now when someone is having a seizure, imagine their brain completely covered in blue, covered in those static shocks going crazy.
They can be caused by head injury, lead poisoning, tumors, maldevelopment, infections, even fevers. Most cases, they have no known cause.

Tonic-Clonic (Gran Mal) seizure simplified.

First the aura hits: A funny feeling rolling through your body. Kind of fuzzy feeling like white noise.

Panic: Depending on how much experience you have, it may be heavy panic or just the cold realization that you are about go through hell.

The Contraction: Lose feeling in your body for a split second just before you feel all your muscles clench simultaneously with every ounce of strength that they have. The last thing I heard before blacking out during my second seizure was the high pitch screech from the air being squeezed out of my lungs.

The Episode: Yours muscles quickly release all that tension and they start spaz out and pulse uncontrollably. This is when you start to flail. Now you slide in and out of awareness while your body tries to go in ten different directions. This seems like it goes on for an eternity when really it is taking place for a minute or two.

The Blackout: Self explained.

The Awakening: Body now still and almost full consciousness gained, movement is not an option. It feels like all the energy you had was vacuumed out of you. Think of the most tired one of your muscles has ever been, then multiply that by 100 and apply it every single muscle in your body. All 600 of them.

Right on the button. Everything. Except for me, Im awake for every second of it.

What tv shows or movies do you watch when you need a good laugh?

I love ridiculousness. Always gives me a good laugh. Grown ups, Let's be Cops, really any good comedy with good actors. I'm also a big UFC fan. I grew up watching WWE wrestling but as a matured, I realized all the fake in it. So every once in a while me and my dad will watch it again and get a really good laugh at a obviously fake punch, or wrestling move or something.

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Completely different. I was going to join the Airforce, and that got shot. Realized I can't drive. Can't work certain jobs. Can't be alone. I just try to be positive now. But before, I completely gave up. Medication with side effects of suicidal thoughts wasn't helping either. Now I'm taking college classes online and patiently waiting for my doctors next step.

I've heard that medical marijuana is the best thing for seizures. It would be great if consuming a little edible would help you. Have you looked into this? Florida might be slow to legalize it. I've heard a lot of people have moved to Colorado for medical marijuana. Or you could come to Washington. :) I had a roommate who had seizures I know it's hell. Stay strong.

Thanks! I have a doctor in Colorado with all my info. If things don't work out here, I'll be taking a trip up there.

I'm 15 and have been dealing with epilepsy for about 7 years at this point. I have also had (technically) 2 brain surgeries. I've been on a dozen medications that have had mostly negative side effects. I I was curious about some of the most memorable side effects you've dealt with. Has any medication really changed your mindset or have the side effects directly impacted your life?

Wow, I've only had it 4 years..Well I noticed that I have a pretty high tolerance with medication. Like I'll take a sleeping pill and hardly feel anything. But if my dad pops half of one he's out in 5 minutes. So the side effects of the medicine aren't super strong. The strongest though, was probably the first. I was on Keppra. And it brought on some suicidal thoughts and crap. It was my first seizure medication and it was while all this started so I was just stressed and I felt like my life was ruined, etc. That med. wasn't good for me at all. I was token off of it and got the help I needed for the suicidal sayings and thoughts. Im also taking immune globulin by IV once a month at the hospital and it leaves like these little patches on my back, a couple on my chest and arms, and some on my belly. Like a slight discoloration. Nothing big, its not as noticeable now as it was before. Every once in a while my face, head and hands would get really really tingly. Like trillions of teeny like ants crawling on them. And it multiplies when I touch or rub it. I was told this was from the Topiramate. And I also took 2 rounds of chemo. I was lucky enough that my hair didnt fall out, but I did lose some weight. Went from about 135lbs to 125lbs. Besides that, honestly I dont get heavy side effects from any of my medication. Thank God. I'm sorry you have to deal with them.

Didn't your doctor tell you that you shouldn't do AMAs if they trigger you seizures?

Ooohh now I get it -.- you're not the first person

This sucks. Im not sure id have to ask my parents but i think that my brother has something similar. He has diognised epilepsy and has his left side extremely weakened. He is 35 now but the illness started when he was 7. From what i heard it went from life threatening because in the begining he couldnt even eat due to a lot of seizures but it got better. Its true that he cant use his left hand at all and mobility in his legs is troubled. But his seizures are scarce. So its good now.

My question is: What is your friends reaction to all this? And how did this affect your social life?

Oh and on what meds are you? My brother is on eftil and lamictal.

I am currently Tripeptal, Captopril, Topiramate, Vimpate, diazepam(as needed), and Midazolam(as needed). I am also taking a round of Immune globulin once a month by IV. My social life is good. And friends take it fine, they are all understanding. Although I did lose my gf of 2 years because of my condition in February. She was the one who pulled me out of the beginning of my depression and suicidal thoughts (mostly because of another medication that i was on). And now shes gone.

I have medical mj. I don't use it for siezures but, me personally, I don't like being high all that much so if/when you do try it, try to find one low in THC / high in CBD if you can if it bothers you as well. There are some specialty strains coming down the pipe like that as well.

Yes, the one for the epilepsy thats being developed is called Charlotte's Web. It is very very low in thc and very high in cbd.

I'm sorry to say this, but I think if all it took to dump you after two years was you're condition then she didn't actually dump you because of that. She was just using you're condition as an excuse because she was too much of a coward to say the truth.

I reaaallly hate being clichéd but I truly mean it when I say: stay strong, and have a wonderful life :)

I broke up with her. But for weeks she'd say "please break up with me". and was completely serious about it.

She didn't want the guilt/public opinion

She has a tremendous amount of pride

I have no idea what any of those do but i recognise diazepam ive seen my brother take those. One more question: Does your insurence cover the expenses if not how much do you spend monthly on medications etc.

My insurance covers it. Diazepam, or Valium, can also treat muscle spasms anxiety, insomnia, and many other conditions.

You're girlfriend dumped you because you had a brain problem? Excuse me for saying that she's a cold hearted bitch :)

Sounds like you've been through a lot man, best of luck with the rest of you're life!

She was really supportive at first. Then she just started changing. Like after my chemo, I lost weight. She didnt like that. Said I was to skinny and skrawny. Said I wouldnt be able to support her or a family in the future if i didnt get cured. I'm technically the one who did the break up. But for weeks, she'd practically beg to break up with her.

That's awful, made my jaw drop. Though it probably feels otherwise, you're rid of someone who wouldn't support you when you needed it most - and that's truly a good thing. Makes space for someone who Will support you.

She did support me for about the first year. Then literally started saying "I cant keep babysitting you". No one will ever understand the amount of pain felt when she'd say that.

Do you prefer cookies or brownies?

Man...the hardest question today. I'm serious. Probably cookies. Only because I'd probably want some milk after a brownie. And I don't always have access to milk. I cant eat cookies anywhere and be cool. Chewy oatmeal raisin preferably. :)

Will you ever be able to rehab your left hand so that you can use it without suffering the seizures?

Also, where was your most awkward seizure?

After my surgery in 2011, using my left hand was fine, I could use it all I wanted. I took physical therapy for it to try to regain its dexterity back. It wasn't until around march or April of this year that using my hand became a big problem. My most awkward seizure was probably at a Color Vibe 5k run. I was volunteering at the register booth checking in the runners readying them for the race, there are hundreds of people there, thousands outside that tent. And I began having a seizure while registering a woman as hundreds of others watched. It only lasted about 10 seconds, I got up, sat in my chair as if nothing happened, and continued working.

I could only imagine how that looked to everyone else. "Oh don't mind me, I was just having a seizure. Sign here please."

Yeah, literally. Like I just got off the ground and looked at the lady, asked for her name again, found it on the list, checked it off, gave her the race bib and continued on. No one did anything except my mom who was there volunteering with me, who laid me down. Like no one cared. Didn't even ask if I was ok.

May not have known how to react -- but it's disturbing they didn't ask if yu were ok.

I was pretty embarrassed. That was the first time anything has happened outside of my house.

NO! I take the awkward one back! I just remembered I had some in the shower. In two separate occasions I began having a seizure in the shower and had to call for my parents. The first time I managed to hop out and grab a towel to cover myself just barely. But the second time, my body seized to quickly and couldn't jump out. My mom barged in with my standing naked in the shower, I then slipped and sliced my back open on the faucet thing...as i continued to seize naked with mom trying to protect me from getting hurt. Oh well. what can I do...

What was the reason your doctor thought chemotherapy would help?

I believe he thought it would kill off the antibodies that are doing the damage to my brain, and give it a chance to grown new healthy ones or something.

Fellow epileptic here. I'm 19 and 1 year seizure free, but I've had them for the past 3 years. I've had that "twitch" that you're talking about and will have to mention it to my doctor the next time I go in... My questions are these:

When you sleep are you hooked up to an EEG or any other machines to check for seizures or do you just know?

Do you have any warning before your seizures? (Like an aura)

Congrats on your 1 year. I hope that's not a sign of return though. I'm not hooked up to anything when I am sleeping. But I've had dreams of drowning, my nose being held shut, and a snake contracting me. Multiple dreams like those. Where I cannot breathe. I also wake up sometimes with very sore feet. And During seizures, my toes curl down really hard. So I'd like to believe that I'm having them in my sleep. Yeah I get auras. They are just this weird kinda chilly electrical feeling on the left side of my face, tongue and arm. They happen and i have about 5 seconds until the actual seizure starts. Just enough time for me to call for help (Im never alone. Im not aloud.) And lay on the floor or something.

I'm epileptic as well and I was just wondering if you had a warning signal/aura back when you were having the seizures? I'm always curious if others do since I have de ja vu.

I never saw this comment, and it's weird because sometimes when I wake up, I'd have a really really strong de ja vu mixed with like a million butterflies in my stomach.

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I really don't know...I guess I'm still just a little self conscious? It's a weird feeling to put out a picture of your brain for everyone to see lol. At first it was, surprising. Unbelievable that I was looking at MY brain. I mean who gets to say "hey I have a picture of my brain."? It's a little weird though. It's two pictures, before and after. The after shows a chunk or two missing..

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No, It looks like 2 nickels next to each other in the picture. But idk how deep down. I asked for a piece, but they declined...they had to send it off for testing and such

I asked for a piece

This guy asks the doctor for the important things

Come on now. Who doesn't want a piece of their brain? Walk into my room, "hey whats that?" Oh its just a chunk of my brain...floating in a little jar of liquid

formaldehyde or whatever it is

That sounds sucky. Have you seen the Surgeon's knot for your shoelaces? I've heard of it being taught to kids with wrist casts because it's simple enough, says put and fits in with their uneven dexterity.

Thats a pretty cool site. I saw a show on tv once, I forgot what it was called but it was all about tying show. Well that particular episode. Like the guy was like "ok you woke up with one arm what do you do?" and he walked another guy who to lace up and tie his shoes with one hand.

What are the biggest obstacles in your daily life? Is it the disease itself or is it more of everything that goes along with it... (i.e. Financial Issues, Family, Healthcare etc.)

The reason I ask this is that I am the founding Vice President and Director of Operations for a start up non-profit organization dedicated to Neurological Disorders, primarily focusing on seizure activity from uncommon diseases. We feel that if we can help researchers and doctors find the origin and cause of most seizure activity that we can help cure some of these diseases affecting millions of people globally.

We are in the very beginning stages of getting this non-profit organization together. I live in Cleveland, Ohio which is basically the Healthcare Capitol of the world, with Cleveland Clinic, University Hospitals, and CASE Western Reserve University, along with our new Medical Mart (aka Global Center for Health Innovation). If we can make this nonprofit successful we hope to contribute money and resources not only to researchers and healthcare professionals, but to the families and loved ones that deal with these diseases on an everyday basis.

Rob Turek ( www.robbieflair.com ) is the President and Founder of The Dakota Turek Foundation. His son was diagnosed with LKS, a disease which sounds quite similar to yours that affects seizure activity within the brain, and when sleeping his seizure activity is at its worst.

We have an awesome group of people working together to make this organization a success. We would really like to start figuring out how best to help those in need and where to contribute our resources to help find a cure and take care of those affected by the disease in the most productive way possible. We have a number of sports players and celebrity contacts that will be involved with this organization to help get it up and running.

Local News Story: http://www.19actionnews.com/story/26480555/bartender-dad-hosts-fundraiser-for-son-with-rare-brani-disorder

Pictures from our Foundation Fundraiser "Dakota's Challenge": http://www.clevescene.com/cleveland/photos-from-cocktail-week-cleveland-dakotas-challenge-fundraiser-at-barley-house/Slideshow?oid=4376661

I'm not trying to steal your IamA Thunder, but I really would like to hear from you on how to best support those affected by neurological diseases. I am bookmarking this page as a reference. Thank you!!!

I have never heard of anything like that. It's incredible. Dakotas rocking a pretty cool scar there ;) As for the obstacles, it's pretty much everything you mentioned and more. You can already guess why the disease itself is an obstacle. I mean seizures, light paralysis of one side of my body, learning disability, the scar causing self consciousness, being restricted from driving, working, etc. And each of those can be broken down much much much more. I have in other questions. With the financial issues, this becomes a problem when I am not aloud to be alone anywhere I go because I can have a seizure and have no one to take care of me. My mom had to quit her job and be a stay at home mom. I am 19 and have yet to have ever had a job. We only rely on my dad's income and my SSI I get for my disability. We have to pay for gas, food and other expenses when we have to travel to Miami once every 3 months to meet with my neurologist and to Tampa an Hour away once a month so I can have a monthly treatment of Immune Globulin done. My dad gets paid once every 2 weeks and I get the SSI once a month. Sometimes we cut it close and its just not enough. This ties in with Healthcare. Again, I go once a month to Tampa for treatment where I sit in a chair and get pumped with antibodies. I sit there for about 8-9 hours. They are very nice and treat me great. But its never something I look forward too. The MRI's, CT, scans EEGs, Blood work, EKGs, IVs, etc. It's not fun. And sometimes I think the insurance agrees. And they decide its our responsibility for the medication and treatment. So then mom has to go through a big process and fight with insurance because there's no way we can afford an MRI scan. Which then that ties with the family part. Mom and dad have obviously been the biggest supporters. No way I could do any of this without them. I cant even begin to explain. But it hurts to see them hurt. My sister witnessed my first seizure. Shes the one who went to get my mom. She is also a great help. But my dad is the most sensitive of all. He already suffers from depression and high blood pressure. And I think I just make him worse. He is paranoid about me. Any noise he hears in my room, he will bolt to my room and ask if I'm ok. It's been 4 years, and its still like this. I am Puerto Rican. And during my seizures I can feel, hear, and see everything. And it kills me when I'm seizing and I hear him almost in tears, "ya mijo por favor. calmate. por favor ya mijo." Translating to "stop my son, please. calm down. please stop my son." Continuing on with family, is my love life. I had a girlfriend, we started dated 11 months after my surgery. She pulled me out of my depression and kept me up. We were perfect. Our families loved each other, everything was great. She witnessed some of my seizures and was supportive. She knew what to do and was great. But about a year and a 7 months in, she began changing and said she couldn't do it anymore. She said if I couldn't get cured, I wouldn't be able to support her and a family in the future. We split this February. I fell into a depression. Not only because I lost my highschool sweet heart. But because I lost her because of this. I fell to about 119lbs. I'm 5'9 1/2. physically fit. Now back normally in shape at 135lbs. I was going to join the Airforce. But that got shot. I am now studying Criminal Justice Technology in online classes, but I'm currently having some financial aid issues. Once I finish this, I am looking forward to a career in forensics. I cant even drive. I'm a teen, what teen doesn't want to drive? But there's more to life than that. I've overcome these obstacles though. Because I'm still here.

Im going to say you will probably say yes to this question but have you tried contacting Dr. Ben Carson at Hopkins? He specializes in RE and had treated all ages including people your age (oldest patient was 24 ish). it sounds like you had some brain tissue resected but his approach is a full hemispherectomy of the affected lobe with very promising results over the years. Most make a full recovery with a slight limp. Based on your symptoms it seems thats the next logical treatment. Best of luck mate

-medical student

That is my worst fear...and last resort

I'm 18 now but when I was 7 every time I would wake up my body would start twitching/vibrating/shaking?(I don't know like if you've ever tried to grab something so hard that your hand started shaking, like that but throughout my whole body) and after about 30 seconds of that weird twitching thing I would pass out for about 30 seconds, and then I get a huge headache that lasts a couple of hours and I would be fine the whole day until I wake up again the next morning. About 3-4 months after I turned 14 it all stopped and now about a year ago it started up again but now it doesn't happen every time I wake up, more like once maybe twice a week. I'm worrying that it'll get worse and something will happen where I get seriously injured. Does anyone else have this happen to them, is this normal, should I be worried and go to my doctor and ask her about it?

I think you should definitely tell your doctor. Because 7 is the prime age for seizures. And most kids that age literally just grow out of it. And there have been cases where the seizures do return. She is probably just going to send you to get and MRI done. If not that, a sleep study in the hospital, where they put you in this room and hook up these things to your head that read your brain waves called an EEG. And it will read your brain while you sleep. Hopefully you will have one of those episodes that night in the hospital and they will send the results to a neurologist to read the waves and check if its serious or not. I think you have a better shot at the MRI though. That way they can look right at you brain and see if anythings wrong.

How do I know if I have a seizure while I'm sleeping? From what I can remember, I've had a couple of occasions where I start to shake while in bed mid sleep. I mostly remember my neck/head moving from side to side (not fully side to side but def a left to right movement) then I either get conscious or fall sleep but I always feel my neck tense afterwards. I also feel my body tense up and can't really move.

This has happen to no more than 10 times in the past 3 years but idk if I'm not sure if it's a seizure or not. I know all of this might sound stupid since I'm unable to tell but just thought id share it with u. Good luck.

I dont really know anything about it but I know that when people have sleep paralysis their body tenses up and they can't move. You should look it up.

Fellow rare autoimmune guy here, how compromised is your system? Does like a cold take you out for a while?

I haven't gotten sick in a while. I get pumped with Immune Globulin (fresh antibodies) once a month at the hospital. I guess that helps with my immune system and keeps me healthy.

I see, do you have to do regular therapies like corticosteroids?

Nope. They just give me some allergy meds, Tylenol, Cortisone steriods then pump me with the the antibodies. takes about 9 hours. Then I go home.

Unless thats what you were asking

Have you thought about trying medical marijuana?

Yeah, Im in a lottery for it. It means they are only going to pick a couple people to try it out in Florida since its not fully legal yet.

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No, I've been lucky enough to not have any seizures in school. I would begin to daydream and would just twitch really hard though. And it would wake me up and I'd have no choice but to focus in class. I was always terrified of falling asleep in class, because I knew that waking up could trigger a seizure. I did sleep a couple times but again, I was lucky enough to not have any during class. Well, I sit down and I bring one foot up there, then I take my cheek...lol jk there's no way I'm that flexible

I twitch a lot when calling asleep but I thought it was just muscle spams. Should I get that looked at?

I think you're alright. My ex used to twitch all the time when she fell asleep. Im sure thats normal for a lot of people.

Have you done any research on medical marijuana strains? There is one that was featured on CNN for a kid that had a large number of seizures daily. If you choose to use medical marihuana, it could be a good place to start!

Here is a wiki article for that strain: http://en.m.wikipedia.org/wiki/Charlotte's_Web_(cannabis)

Yes, I'm in a Lottery here in Florida for that. They are only picking a couple people to do trials of the medical marijuana at the hospital I go to since its not fully legal here yet. I am hoping that I am one of the few selected for this medical mj treatment!

Having encountered such a case as a med student, did the doctors suggest you only the total hemisperectomy procedure as an option or there were other surgical options such as cortical "shaving" of the affected areas of the brain? How soon did you manage to regain control of the left side of your body? Did you undergo physical therapy or you managed on your own?

They did suggest it. But thats my worst fear and probably last resort. You wouldnt understand unless you were in the position. To have half your brain removed. Idk what the shaving is, but I did post the picture of my brain now. It took some time. After 2 weeks, I could pick up a cup, but my hand looked like a robot. and i had to keep looking at it for it to work. once i looked away, the cup or whatever is in my hand would fall out. After those two weeks, i could slowly start walking with assistance as well. I can hold things fine now with my left hand. but if I were to close my eyes, and you put something in it, I couldnt tell you what it is. I also have a little trouble reading texture with it. some i can, some i cant. I took physical therapy for the dexterity, it helped a little but its no where near as good as it was before.

Have you tried meditation?

I wouldn't know what to think. If I'm alone in a room, with my thoughts, I'd go crazy.

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cool story! I have never met another person with my condition before. And I too have to drink out of soda cans from the right side of my mouth.

When I get migraines I get nausea afterwards and then a headache. It seems similar to what you get after a seizure. Do you know if that is normal for seizures? My symptoms have gotten milder as I gotten older.

I would think so? I tell my neurologist and he never said it wasn't normal. He just prescribed me some meds for nausea. One or two mornings I have woken up with this sharp headache. Sensitive to sound and just a little to light. It lasted all day long. I'm not sure if it was a migraine. I cant tell you if Ive even had one before. But it felt similar to the headaches I get after seizures, and I do think I am getting them in my sleep, so maybe that night I had one in my sleep. idk

Have you had any EEGs done while you are sleep and capture the seizure happening?

No, I am having a sleep study set up this month for this reason.

Good! There's a chance there's something in the way your brain sends signals to itself when your body comes out of the sleep brain wave patterns that's causing your seizures. I take it they've already ruled out autoimmune?

Its in the brain stem. http://en.wikipedia.org/wiki/Reticular_activating_system And idk? The condition I have is an autoimmune disease so I have no idea.

Have you ever tried medicinal cannabis? If so has it helped? Best wishes to you buddy.

Im on a list waiting to be picked for it. Thanks!

Yeah, I have catamenial epilepsy, adult onset at 18.Took the neuros 10 years to figure out what was wrong with my brain. Nothing was, just my hormones. The large amount of hormones during PMS cause tonic clonic seizures, but most of the time it is an aura only now. Do you remember what having no fear of the seizures felt like?

Yeah. I could use my left hand for anything. And I wasn't afraid to go to sleep...When I was like 13, my cousin had a strobe light in his room. I fell on the ground and pretended to have a seizure. What karma huh? Irony

Have you thought about using Dragon Dictate for your typing needs? That might help you avoid seizures as a result of typing.

My right hand has been getting much better at everything. I can type pretty much just as fast with one hand than with two. Same with texting.

Sincere medical marijuana isn't legal in Florida yet have you ever tried some of the weed floating around the locals. I know it's not the same but does it help even a little?

It probably wont. Its grown in complete opposite. Street mj is grown for high thc so you can feel high. the stuff i need is low thc high cbd. the medicine.

Have you tried taking shrooms? People have had success with various neurological disorders. Or liquid THC/CBD, certainly couldn't hurt much?? Im not a doctor so... can't hurt to look into it on your own.

Hope you find some relief and peace from your symptoms soon.

Not going down the shrooms path man lol. Im on a lottery list for the CBD. Hopefully my name gets pulled. Youre the first person Ive ever seen say to use them for med use

Hope it helps. I get migraines with an aura and visual disturbance but never since I use cannabis regularly. I'm not a medical patient but found using it recreationally gave me a relief from migraines. Move to Colorado, may find it's easier to obtain.

I have a doctor there with all my info. If my name doesn't get pulled, that's were I'm headed

Any particular reason you don't want to try shrooms? Not trying to peddle but I've heard of lots of people who suffer from SEVERE! migraines who dose once a month to keep the attacks at bay permanently with no ill effect. Can't remember if it was just limited to migraines, but CBD I know has had results with seizures.

IDK, its your body and your choice, but we are talking about two completely natural plants which people have used and tested extensively, baring some one in a million issue when interacting with your condition or anything specific to you. I think compared to some of the other stuff you must have already tried this is a no brainer.

Unlike most I dint have an issue thinking of myself as a lab for this kind of stuff. So I know I make it sound like an easy decision.

Hopefully someone else can chime in and throw down some info. Im not the best at this area.

I've just honestly never heard of them used for medical use is all. Im already in the running for the marijuana. Just waiting for it.

Drugs Inc did a documentary one a man who grew his own mushroom for medical purposes. He suffered from some of the worse migraines they had ever heard of. The only thing that helped him was tripping out on mushrooms.

Def. better than migraines