Community Forum

Nocturnal Seizures / Night seizures

Hello, My name is Danny I am 27 and have been dealing with seizures since 2004. Never before that date have i had one sigh of seizures. it has been one of the worst and hardest battles i have been dealing with also. one questions i have is that the seizures i have are weird, starting like this all the seizures i have had to this day were at night after i had woken up from sleeping, i would wake up have to pee and in a sweat which is weird.  also i have never had any during the day but i have had several grand mal seizures at night like i said. so if anyones has any ideas why this happens please let me know and hope all of you are doing better with your epilepsy.


Hello csihar

I kinda can relate to what you're going through. You see I use to have the granmals, but now I'm just having the pedimals. I have had the pedimals for 33yrs now, but I started having the granmals only four yrs ago. But I have been having the granmals for four yrs now. Since I started having the granmal sz I haven't been able to sleep in my own room by myself, and I live with my parents so I feel like I'm going through a great deal. I mean I'm 36yrs old and I can't even sleep by myself, because I tend to wake up in the middle of the night, and I feel like I'm losing oxygen, and I can't yell out, and I can't move my arms and legs. I have asked my doctors if I could possibly be having  a sz at night, but they say no, and they want me to have a sleep study done. Except that I do have these sleep studies, I feel like my body shuts down, so they can't ever find out what the sympton is or what the cause is. so you're not alone in this, I mean none of us that're in this situation is ever alone we always have others that are dealing with just about the same issues.

Take care of yourself, and God Bless you!

Hi Danny,

 This sounds very similar to the seizures that I have, I've never had a seizure while I'm awake always while I'm asleep. I've had both grand mal and petit mal seizures when I've been asleep and what you describe almost always happens to me after a petit mal seizure, I'll wake up needing the toilet and although I don't normally realise at the time I'm normally pretty confused as well, I'll feel like I've had a really bad nightmare which seems to linger after I'm awake if that makes sense. Normally if I have a grand mal seizure I end up on the floor. You don't mention whether your seeing a doctor or are currently on medication, but just to give you some light at the end of the tunnel, I've been on a pretty good programme of AED's for the last few years which has so far dropped my seizures down to about one every six weeks; which doesn't really affect my life in any major way, and hopefully eventually they will be controlled fully. I'm afraid I can't enlighten you to why this only happens at night,  it just seems to happen to some people like this, but look on bright side at least your already lying down when your having a seizure:)

Oh yes, I sure know what you're going through! Actually, I think that for years before doctors had determined that I had epilepsy, I'd been having so-called "nightmares" as a kid. And that my parents didn't recognize that they were actually nocturnal seizures. But then, that was many years ago and lots of parents didn't even know the definition of "epilepsy." But in my mid-20s I got fully examined over several days in a hospital here in New York, and it was determined that I had (and still have, 40 years later) temporal lobe epilepsy. I've been through surgery, tried about 15 different pills, lost jobs because of seizures, yet still love my life. But I can expect a seizure (often at night when my blood sugar is at its lowest) once or twice a month. Until I found a pill that does help (but doesn't "cure") I'd wake up in urine--sometimes even more--and not have any idea where I was, who I was, or even what had occurred. No, you're not alone. And do remember, over 55-million people 'round the world have various forms of this neurological disorder. The smartest thing is to follow a trusted doctor's suggestions and do not lose contact with other people who also have epilepsy. I've learn much from them--much!

Don´t you think it could be be apnea---Now the doctors have a machine, to proof it. Just over one night..If you don´t have enough oxygen, you will have seizure We dont all realease if the nose is narrow, I did´t realease it myself, it could be loosing of oxygen, that desturbed me

I'm sure glad I found this forum - I really thought I was SO about to lose my ability to function at all. I had day petit mal seizures and I'm sure I'm having night seizures. Weird dreams that (sorta) come true the next day (honest!), frequent urination, night convulsions, sleep walking, memory loss - and more. But, I didn't know low blood sugar can cause it. I already know I have to watch my blood sugar during the day. George R - what surgery did you have? What pills did you use? I'm on lamictal. I REALLY don't want to lose my job and I REALLY don't want to lose my driver's license. Any experiece with your neurologist threatening that?

Hi, my neuro-guy told me he was gonna have my license taken away because my seizures have decided to come back strong. I did well for a while then the company that I mail order my meds thru began to mess up. I have grand mal seizures during the day and night. The last ones I had WOW what a mess. My mother came to take me to see my neuro-guy I don't remember leaving the house, I don't remember driving to the office being in the office having seizures in his office he gave my mother a prescription to get filled for me right then she said I walk into the pharmacy with her do I remember no she said she took me home and I had 3 more seizure and she and my brother tried to lift me to take me to the hospital and couldn't I was like dead weight  the had to call an ambulace and the hospital kept me for 2 days. All I do remember is waking at home in total I lost 3 or 4 days. Now I wonder why my neuro-guy wants to take my license...LOL

I don't wake up already having had a seizure, I wake up having one during the night, or I wake up and then I have one, but I always wake up. I have never had one during the daytime hours to my knowledge. Hopefully it stays that way...but from what I have heard, it is doubtfull.


On an interesting note. I developed a heart arrythmia, hypothyriod and seizures all around the same time. . .the only one I cant seem to get in check is the seizures.

wow thats is crazy because i had a-vib last year...and my blood sugar gets to low i will have them but only when i get up from sleeping and nobody knows y

hello i had the same problems at the same time as you with everything you just explained i would like to talk more about this with you, if i could and hopefully beat this war with epilepsy and medical problems i am having and urself

OMG exactly like you I only have them when I wake up at night, never during daytime. I too got a heart arrhythmia at the same time and had to get an ablation

  It i the same here, I always get seizures at night.  But now I think it may be apnea, I will get the result of rearching next days.  It is lack of oxygen.......then I have seizure.  You could ask the doctor for research, if this should be because  apnea, which is disturbing you.    Good greetings to you, from me and my country in North   -  Iceland---

Hello North Island,

How often are you having seizures? I am having them about once a month and when I wake up afterwards it takes me a while to breath cause of the lack of oxygen. How about you?


Two years ago I had some sort of viral infection that put me in the hospital for 10 days ... lost memory, couldn't eat, and had a series of every type of seizure that you can think of.  Since I left the hospital, I only have night seizures.  Almost all of them are right before I wake up.  I have them about once every three months.

You mention that apnea may be causing them.  I wonder if it's the other way around.  I've never had apnea.  However, my wife has told me that I stop breathing for about 10 seconds in the middle of my seizure.  As you can imagine, I wake up out of my seizure gasping for breath.  I have other effects that last for about 5 minutes... I can' talk, I can't hang on for to a thought for more than 3 seconds, I'm dizzy ... but those are probably unrelated.

 What did you finally learn about yours?


i still to this day have not learned anything and it is making me feel very bad...but i have not had a seizure in a long time cause the meds seem to be working but i am having other medical problems now which is not good..


It is interesting that you mention Apnea, i will do some research into this, if you have any information you can send by email that would be very useful


  i was having nocturnal sez, once every mtn or so bad ones clusters of grand malls. Sometimes I'd end up in the er. What put an end to them was getting off generic med, taking a mild sleeping pill & making sure I eat something before going to bed.That keeps my blood sugar from dropping. I still get powerful life like dreams that I remember.It is wierd that that u can remember something that never happened. Tomorrow it's going to be 7mts & no sez. I'm going to see my nero next mt about driving. It was him & the head nurse along with my wife that fought got to ok the generic with the ins co.I tend to blow my top when dealing with those people.Imagine dealing with the gov. Nocturnal sez are tough to deal with because I have a VNS but because u don't know when to use the magnet and don't feel them coming on and u disrupt the whole house so nobody gets a nights sleep. Like when my kids where babys.

 I was on those generic meds for yrs taking so many I would rattle feeling awful,tremers.balance problems,vision problems,moody,depression u name it yet I was still having break through sez.They tell u they are all the same but don't belive it.A least in my case.Maybe I'm more senitve. good luck & don't ever give up.




Insurance companies cannot make you change to generics when your doctor says you must have name brand.  I switch to generic lamictal and had immediate increase with nocturnal seizures.  My epilepsy Doc wrote name brand only on script only and wrote a short letter stating my problem, and necessity of takind name brand.  I am not able to get insurance in the free market, so I got the PCIP (Pre existing Condition Insurance Program) two years ago.  This is referred to "obama care".  You have a payment like everyone else (mine is $309 monthly).  They approved my name brand Lamictal.  FYI,medicaid has a list of medications they want to decrease individuals  taking because of the cost and lamictal is on the list. 

Hey Danny I am in the same situation as you.  I have to sleep through the night or I tend to have seizures.  I had 2 last night after getting woke up.  I hate them it is sooo scary to deal with them because I think that I have anxiet y about them every night when I lay down.  I have a daughter who is 10 and she is scared to wake me up at night.  I am so sorry that you deal with these they are very strange and I was curious if you take anything

yes i am i am taking phenytion sodium, tegretol and a chewable dilantin tablet....yes i know the feeling i was a mads for my anxiety as well but off and i am going to get back on them....hope that helps let me know..


Ive been quite lucky with meds, not taking more than 300mg in one day, im so glad im not on more, couldn't imagine how people feel taking huge doses of meds.

I am on phenytoin but on a 22 week meds change over to lamotrigine as there is something called 'phenytoin syndrome' which is caused by long term use of phenytoin.

What meds are you on ?


I had my first gran mal April 2007.  Since I've kept notes by dates, doctor visits, blood test numbers, various tests I've gone through, how my body feels with diet changes, excercise habits and medication changes.   I've had multiple EEG's and MRI's and they all have been NORMAL.  I'm sure you've read that there are a variety of reasons a person can have seizures.  In short, I've learned that my thyroid (TSH #) was 9 in Dec. 2007.  Normal range is 0.465-4.68.  I was hypo which meant I was tired among other ways it affects my body.  Now my TSH is around 3 and it seems to my personal number for feeling good.  I've learned that if I eat high glucose(sugar) food for example, a bowl of ice cream around supper time and don't eat a high grain sandwich before bedtime I will have dreams, wake up startled, have a feeling to urinate, sweat sometimes, with a choking feeling like I was going to throw up that in the past has lead to uncontrollable shaking of my right hand and body, before passing out into a gran mal.  This event has happened to me in Sept. 2007 and Jan. 2008.  Scary, yes.

I've gone from 750 mg x 2 daily generic (Keppra) to 250 mg x 2 daily with my neurologist's guidance.  I work with my endocrinologist in getting my thyroid medication level right.  I work with my GP to keep him up to date and his guidance on blood glucose levels, blood pressure, weight gain, and cholesterol.  I do my best to watch what I eat, don't over excercise (over 2 hours), and always eat a high grain sandwich with protein.  I avoid pop and juices.  I drink water, tea and milk as much as possible.

Hope with Seizures

I started having seizures only at night or when I was asleep.  It ended my 35 year career as a professional helicopter & airplane pilot.  That was almost 6 years ago.  I am 62 now and my seizures are controlled with medication, Tegretol & Clonazepam.  This is my 8th medication and it seems like I finally found one without any significant side-effects.  So I can't complain too much.  I know there are people who are in a much worse condition than I am.  I am one of the lucky ones.  I thank God for that.  I can still drive.  I don't have seizures and haven't had one for almost 2 years, and then it was because I forgot to take my medication and I stayed up late talking to an old friend so I was sleep-deprived and I had a seizure.  So that was my fault.  If I take my medication and don't get sleep deprived, I am ok.  If anyone needs to talk to me or email me, I would be glad to talk to them and help in any way I can.  Terry 480 830-2484

I live alone & don't know if I have them at night, just had an 72 hr. Ambulatory EEG. I reported, Zero seizures. Doctors will see what is recorded, there might be some at night or some very quick ones daytime seizures(1/2-2 seconds)that I didn't notice. I want to know.Tim B.

Hello. I have had seizures since I was 6 months old. I am now 29. I have had alot of night seizures both as a kid and now. Over time I just tend to think before I sleep and dream ; ) so-far my night seizures have stopped.... But so far in life they have yet to find a way to control my seizures because I have somany types. (patitmal, sympol & complex partal's, grandmals, Myoclonic, Atonic, Tonic, Clonic, Tonic-clonic, Febrile, Status Epilepticus.) 

I noted about 7 years ago after I had my Vagal Nerve Stimulator battery replaced , I would wake up w/ a cloudy mind and headachy and confused.  I thought maybe I hit my head on the table next to the bed.  My husband tried to stop the movement in the bed and talk to me.  He realized I was having a seizure in bed while I was sleeping.  I talked to my Neurologist.  I was having them 2 -3 times a week.

 He did a sleep study and found out that my oxygenation levels drop during the night.  He told me to have a CPAP.  He also noted my wheezing too.  He thought this too could cause seizures too.

I was refered to a Pulmonologist and found out that my asthma had become worse for some reason since the change of VNS battery.

When the CPAP was worked w/ and I found the right medication for my asthma.  My seizures decreased.

I do have a seizure at night when I have a cold or respiratory problem but not as often.

I also started to fast walk again daily and my oxygen intake decreased my seizures at night and the day.  I was averaging 3-5 mi. a day.  I started off doing one block.  Now I walk all over the place!  I am healthier because of it.

My culprit is not getting enough rest and food during a 24 hr. period.

DEFINITELY what I have. I was on klonopin but I kept waking up with auras which freak me out bcs I get some that turn into seizures...only around 2-4am. EVER. now i just started keppra...good luck. to us both!

I have had 3 night seizures in the last 3 months. I am 30 and have not had seizures since I was a kid...I have been on tegretol my whole life. I wake up to go to the bathroom, then fall and blackout after I go. I have been to the hospital twice with various injuries. (broken nose, bit tongue, chipped teeth, facial wounds) And have had several diagnosises. fainting or seizures. My new neurologist did a 24 eeg that came back abnormal with seizure activity at night. He believes I am definately having seizures.  I also feel that I am having them while I sleep and they jerk me awake.

He is in the process of switching me to lamictal...but just had another one last night:(

I am very confused. Does anyone else have symptoms like these?


Hello Emily

I need to push my consultant for a night time eeg as all tests both in 1999 and 2004 came back inconclusive, ive been quite lucky with injuries until last year when i dislocated my shoulder and damaged it quite badly requiring surgery.

Hopefully making some minor adjustments at home will avoid any further injuries...fingers crossed...hope you don't encounter many more accidents


Thank you..I hope so too.
We actually set an alarm up that will wake up my husband if I try to get I won't hurt myself anymore.
They also put me on a sedative at night to keep the seizures away and help me sleep, until I am up to my full dose of lamictal.
I hope u figure yours out soon and hopefully they will give u the 24 monitor, that really helped me.
But no driving for me now till they lget this all figured out.
Best of luck

Thank you..I hope so too.
We actually set an alarm up that will wake up my husband if I try to get I won't hurt myself anymore.
They also put me on a sedative at night to keep the seizures away and help me sleep, until I am up to my full dose of lamictal.
I hope u figure yours out soon and hopefully they will give u the 24 monitor, that really helped me.
But no driving for me now till they lget this all figured out.
Best of luck

Hi, Emily.  My symptoms sound a lot like yours.  I am 58, and became aware of a problem 2 years ago, but probably I had seizures before then, as I look back on it now.  I wake between 2 a.m. and 6 a.m., have to go to the bathroom urgently (the runs), and frequently black out.  I have had concussions, two broken noses, etc.  The next day after the episode I am exhausted, and have no appetite.  For 2 years the doctors thought it was a GI problem, and that I 'fainted" because i had lost fluid with the nausea and diarrhea--even though I told them that sometimes I fainted BEFORE losing a lot of fluid.  Anyway, finally someone suggested an EEG, and it was abnormal.  So was the second. I am currently waiting the results of a 24 hours EEG, and then the doctor will probably prescribe meds.  Hope things go well with you and they can get this under control!


i've fainted before the EMT said i beat the widow maker, but the ER doctor said i had a seizure. each time that i have fainted i felt like i had a elephant sitting on my chest, they thought i was having a heart attack. the ER only treated for what they thought was a heart problem. they NEVER sent for a neurologist. i told the ambulance guys i was having a seizure.

Hello Danny. I am a 40 yr. old woman who started having grand mal seizures in my sleep 2 yrs. ago on March 12, 2009. Never had them in my life before. First seizure I was taken to the hospital. Nothing was done. 2 months later on May 9. had 2 seizures 2 hrs apart. Taken to hospital again. Was given anti-seizure medication, had MRI and CAT scan. all normal. Dr.'s took my blood, it was normal. Later I had EEG, normal too. The dr. don't know what is causing my seizures. I take Phenytoin 100mg 2 a day and an anxiety pill for the nausea. So far I have had 10 seizures and 4 aura's. I wake up from seizures confused knowing something happened but not sure what until I get my bearings back. I have extreme headaches that last for 2-3 hrs. after seizure, I have extreme nausea, tongue bitten, peed pants and weak legs. Like you, I too only have seizures in my sleep. I don't know what is causing your seizures. They can be caused from head injury, blood vessel malformations in the brain. low calcium, magnesium levels, infections in the brain. Any number of things can cause seizures. What I have noticed by being on here, there are many more people today having seizures than they have had 10-20 yrs. ago. Seizures take alot of energy from us, hence the sweating, and they use up alot of calories too. I have noticed since my seizures, I am hungry all the time. The only thing I can tell you is go see a dr. and get a sleep MRI done so they can know what seizure type you actually have. Each seizure has its own brain waves and there are over 40 different seizure types. I think you have Nocturnal Seizure Disorder, same with me. Seizures that only happen while sleeping. This seizure type is not very well known and dr. don't know much about it. Hope this helps you and good luck with your seizures.



I have just had my meds changed from Phenytoin to Lamotrigine after nealry 9 years as i am concerned about the effects of whats called 'phenytoin syndrome' something to look out for if you are on phenytoin for any prolonged period.

Take care


Hi everybody. Last Tuesday I had a sleep study done and there's evidence of seizure activity while I'm out cold. My boyfriend has told me that I seize in my sleep as well. I was at the study because my doctors were certain I have a form of sleep apnea. By reading the comments on here, I guess my sleep apnea (which is mild in my case) could really be causing my night time seizures. I have to wait until I get my insurance issue solved before I can get my CPAP machine and equipment. My old insurance ended at the end of January and my social worker said that I shouldn't have any gaps. It's been several weeks and I still haven't received my ID card from UCare. They said to call my social worker, so I did and I have to wait for her to call me back since the offices were closed today. I have to call my epileptologist, too and see what he says we should do.

before you get that CPAP device, there is a mouth piece device that repositions the jaw to fix the sleep apnea problem and it's way less expensive than the CPAP around $10.

Hello -

My name is Kaitlin and I am 22-years. My seizures started out as absent seizures, and when I was 16 I started having partial and grand mal seizures in my sleep. My first was falling asleep getting my hair done for prom - what a day that was.

Anyways, when the nocturnal seizures started I wouldn't know until I woke up at a usual time and felt I had two deep gashes on the sides of my tongue from where I had bitten down (on top of being swollen), my face and neck being covered in broken-blood vessels, and feeling very shaken and sweaty. I do know, during a few more recent ones, I became somewhat conscious during the seizure - it was truly like being frozen and watching yourself have a seizure. After that, it took me about 30 minutes to crawl across the floor and up the stairs to alert my Mom or Step-Dad.

Hello - I'm a 37 year old mom of two boys, new to this site. I just signed up tonight because I've been in the hospital all day after having an apparent seizure in my sleep around 4am this morning. I "woke up" (sort of) to my husband being very concerned and telling me I was having a seizure. This is the first occurrence we've been aware of. At the time of it, he tried to talk to me but said I was pretty incoherent (to me, I just felt tired, partly I think from being awakened), and he said my eyes rolled back and that I was thrashing or something. Next thing I knew, EMTs were taking me to the hospital, where I still felt a bit foggy on arrival. As I gained more awareness of what had gone on, I realized from some of the after-effects that this had happened at least twice before, and only at night, but no one else had been there to witness it on those occasions.

I went through an MRI and EEG today, and hopefully will hear about results, prognosis, treatment, etc. tomorrow. I wonder about what all this means, and am worried about the possibility of not being allowed to drive a car, but I am hopeful for the best, for myself and everyone suffering from seizures.

My seizures had a similar beginning. My first seizure was identical to yours and it seemed to start a chain of deja-vu-type sensations which were almost always followed by a seizure. My doctor inquired about "triggers" and at the time I had no knowledge at all of anything I may have done or experienced that would "trigger" a seizure. A brain scan was also ordered to rule out a tumor. I was new to the "game" and this was 8 years ago. I do not have nocturnal seizures any longer but only doing the day, and when I do have a seizure, I receive the deja-vu sensation as a trigger. I am blessed in that so far, I have always received this sensation as a warning. Initially, after the first (night) seizure, they suspected "excessive fatigue" which I NOW know in itself IS a trigger. I'm also told that most seizures, unless it's caused by brain injury or tumor, are triggered by fatigue, high stress levels, tension, or even hunger. It's very scary at first because we tend to think that any problem involving the brain is serious, but in my case, and so far, after the tumor thing was ruled out, I simply made it a game to minimize the stress of a condition (epilepsy)I knew little about. No one even mentioned driving. I think "control" is a key factor, and if you find you are prone to seizures, they can be controlled by medication. I have concluded that for me, epilepsy is only a term for which there are little conclusions as to cause.

Hi Sarae,

I am writing just to see how things are going, and if you got any results back, or if youve had more seizure since, did you end up taking medication etc?

The reason why I am interested is because I am in/was a similar situation, except my first seizure was 3 weeks after my son was born (he is 7 and a half months now). Same deal where I was woken up in the middle of the night, with the paramedics already there. I was taken into hospital, I had a bunch of tests done (as they thought it was some kind of seizure you can get as a new mum). Nothing showed up, so I was sent to a specialist, had an EEG done and two MRI's, everything showed up that there was a SLIGHT difference between the temporal lobes, but nothing massive, so probably in the normal range. My neurologist said I have temporal lobe epilepsy after I described to him what apparently is one of those partial seizures or deja vus, whatever. And he wanted me to start taking medication. I said no way, because I was breastfeeding AND I thought all of that was B.S, as a new mum (you would know too as a mum of two!) that you can go into lala land "deja vu" time with the awesome amount of sleep you get with a tiny new bub :).

BUT, I got another seizure about 2 weeks ago, was woken up the same way, ended up in hospital again, cant remember a thing about it, hehe just the bitten tongue again ;). So they said I have no choice but to take the meds, have been on 2 x 500mg of keppra since, seeing the specialist today.

So how are you going? What ended up happening? Have you been diagnosed with anything? Are you taking medication? Have you had any other seizures? Were they at night too? Or what it is caused by?

By the way, I am in Australia and I am 26 years old. And I just thought it would be cool to get a comparison, BUT if you dont want to/cant be bothered/dont have time etc, all is well and understood :)

Cheers :) 

i'm 52 yrs. lady, i don't have kids however, when i don't get enough sleep , or work on a rotating shift, i'm more likely to have seizures. but as far as having to deal with epilepsy, those of us who have our seizures only at nite while sleeping and like that, we are the lucky ones. yes because during our regular waking hours, we can expect to be seizure free, and be cleared to drive. i'm in texas,where if your seizures are in control it's ok for a person to drive.


I have had parisomias (sleep  walking talking, chanting, climbing up on items, moving things, and doing funny things with my body position) and seizures at night ALL my life. I have generalized during day, but only every few years with Lamictal.  My Doc referred me to Psychiatrist for medication to keep me more alert during the day.  I was ALWAYS sleepy.  I feel asleep while at the Dallas Cowboys football game (at the stadium watching). Since on Provigil my day time sleepy problem has almost gone away, and night time episodes have decreased.  I find that when I am stressed they increase..  Hope this helps. My daytime sleepy medicine has greatly improved my life.  

Hey, I know you wrote this a long time ago but I just wanted to say that I have seizures in the same way. Ill be sleeping and if something or someone wakes me up ill go into convulsions. I can sometimes remember the very beginning, the part where I know I "don't feel good" and jittery but after that I have no idea. Ive woken up with paramedics around me several times, and the thing about me if I'm just starting to go into a seizure I want to do stuff, like get up, walk out, go to the bathroom and all while I'm convulsing and know I shouldn't be on my feet but the seizure just makes me so compelled to do SOMETHING. Ive been having seizures since I was 15 and I was sleeping and the phone rang. I can never be woken up cause Ill have a seizure. Oh by the way my name is Barbara and I'm 28 years old living in Miami, FL, USA. I hope your better and that your children are in good health. reply if you want cause I would love to talk to someone that has the same type of problem I do. Bye

Hello, I have never been told what kind of seizures or episode that I have and it is so frustrating. I just saw about nocturnal seizures while searching the web last night and it kinda sounds like what I have/get. I have had MANY tests and all have showed nothing, I am fully aware of what is goin on during these episodes. they happen at nght in the early morning hours and feels like I am being electricuted, I feel jerky inside and it usually begins with the right side of my body. Touching me can trigger a full episode, please help me if you can...

My name is Kylie. I hae epilepsy since only a few weeks old...Just since September I have been having noctonal seizures, I will usually injure myself in my bed or get up and re arrage things in my room, a few times I have turned on my light and gone back to bed...I do usually wake up for a few seconds and roll over right before. I had one about two months ago and I got up, fell down the stairs (both my parents were awake but neither noticed that this happend to me). Crawled into my brothers bed (we switched rooms about 8 years ago when my seizures were getting really bad in the day and my dad was not yet retired then my mom would actually let me A) sleep after a seizure or B) get into a bed. She did not want me alone downstairs. So anyways Got up went to the bathroom, went back to bed in my brothers bed, then woke dad started doing laudry in the next room. Realized what happened tried to treat the bruises on my back, neck and head and tried to sleep for another half hour...didnt work...but tried

Hi Danny,  I might be able to lighten your worries. I have a son, 8 yrs, and started to experience night seizures about 3 yrs ago. I`ve been documenting everything, trying to find patterns as to what is causing it. He only started in Oct 2011, on Lorazapam .5 ml that is disolved under his toungue/cheek at start of seizure. This stops the convulsion part. the blank stare stays until the episode is done. Same thing as you... needs to go pee usually between 1230 am and 230 am, that is the time frame where one would occur. I have a question... do you WALK a lot? I say this because I pin pointed with in the last 2 yrs, when ever he would walk more than a city block he would have them frequent, like 2-3 times a week. Then we cut it out, and he only walks every so often. Any other exercise is fine. But if he walks more than 1.6 kms a day, guarenteed one would occur within 12-24 hrs. I don't know what it is.  My son also shows which side of brain it effects. Mainly the right side of brain, but has had night seizures 2 times  a year about with the left side of brain. The way he is effected at night after seizure is, he has dead limbs on one side or other. This is how I know which side it effects. (very important) I've caught a video from start to finish on a mild one.  This was effecting his left side, because his right side was effected. Fast asleep, then wide awake with a twinge in leg/foot. called out for help, and it started. I gave him his lorazapam, but this time it took longer to take effect. I do know for the right side of brain it works VERY quick. Almost as soon as pill is dissolved. I use to wake up myself at night, but it was morning thing. Like 230-530 am. I would wake up to having dead limbs on my left side. Happened all my life every couple months. Though nothing of it. Was always told it was the way I was sleeping. Now Dr's are asking why didn't I get help? Why should I? I know it's not the same as having your limbs "fall asleep" so to say. This was like I just had a stroke! That same feeling you get when you go to dentist and they freeze your mouth.? You know your touching your cheek but you feel nothing on your skin. Weird feeling. The last one I had was right after my son developed symptoms for night seizures.  I could only move one side of my body. The right side.  So I've been trying to make some connection with my son. The tremors started about 3 yrs ago. With jitters in leg(s) he would shake them back and forth on purpose to try to make it go away. He would cry because there was a dulling pain that he couldn't describe. We used a hot water bottle and he said it helped.  I could write a book by now. :)   I almost know more than the Dr.!  We are able to control it for the most part with out meds, but it worries me from the last and first strong seizure he had in July 2011.  There is a pattern. I'll try to come back to see if things get figured out for you. Oh, nothing shows up on his test results either. Nothing showing any signs of seizure even occured. Seizures always leave a mark behind in the brain.  I'll chat with you later. Cindy

Hi Everyone,

I am 37 years old and have epilepsy most of my life.  I began with insomnia and frequent auras at 9 yrs. old and nocturnal seizures about 11.  Every single seizure has been at night at I've done everything from sleep walk, even to the point of leaving my home, almost falling down stairs, falling out of my bed, and having grand mals.  You need to know what your triggers are first and foremost.  My triggers are being overly tired and excessive exercise so my exercise routine is limited to a few days a week 20 mins. at a time.  For some reason when I hit 26 I began having more night seizures than ever.  I have have had a long sleep study done and found I was having multiple per night.  Sometimes merely blinking my eyes, some sleep walking and falling.  My seizures are under full control right now; I take 1000 mg. of tegretol XR and 1500 mg. of keppra.  One thing I have found over the years of struggling to live a normal life is that it is best to try for full seizure control.  I do live a pretty normal, independent life, but epilepsy has taken a toll and I became depressed about three yrs. ago when things were bad.  I couldn't even live by myself.  Now, I am in a good place only because I've worked so hard at it.  I am a teacher, live alone, but take my meds religiously and know not to over do things.  I know this can change at any moment though and have come to accept this.   My hope for all of you who fight the daily battle of living with epilepsy find some peace for yourself and you never give up; even when it gets hard.  God bless and good luck:)



I'm 59 years old

I've  only had two Grand Mauls  30 year

I have had and still do have Gelastic Seizures it's where I walk around and laugh, or chuckle.

I wake up and start laughing and saying things like Damn Damn Damn I have walked right around the house.

I'm on Lamictal and Keppra. Without them I used to have them during the day, now I don't walk as far, they don't last as long and they only happen during a sleep or just after waking.

They seem to be the only drugs that I don't get severe side effects.

I've tried so may drugs and test drugs I can't begin to remember, what they were.

I did found out that if I eat late at night or during the day and take a nap I will have continus 

seizures till I take something that will knock me out totally.

Every night I have at least 10. Some worse than others.

But like you it's only at night. Or when I have a nap and wake up.

There are many things that happen not just laughing. Stange feelings wierd deams 

a whole wack of things I could get into some detail, but that would take too much typing.

I wish everyone good luck in dealing with thier seizures


Thanks for listening to my situation I hope I find someone like me,

that I could help or just go over some of things they have done. plus some suggestions

for me to do.





My son is 9 and has gelastic seizures at night, though they started in the day and now seem to be kept to night time with meds.  He was having 40 of these episodes per day with the majority coming at night.  Even with meds he has 5-10 each night-

 He has had 1 tonic clonic seizure but was not on any meds at the time because the Doctors told us his seizures were a nervous tic.  You have found someone else like you-


In regards to "night seizures," I have been tested for sleep apnea and several other sleep disorders. The final verdict was that I was suffering from Myoclonic Epilepsy/Seizures. This type of Epilepsy causes endless fatigue due to the fact that it's only trigger is when your right about to fall asleep or awaken by sleep. For instance, if I have trouble sleeping at night, I try to make up for the lack of sleep through the day. However, when I try to sleep in the day the symptoms are still there...only worse. These Seizures feel as if your having a dream where your falling off a building and your body jolts. 

I hope this helps anybody out there. My proper diagnosis was not made until I had a five day sleep study with a nurse constantly sitting by my side in a chair. Luckily the nurses changed shifts and made me feel as ease, heck, they even made me laugh.

Keep your heads up. 

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

24/7 helpline