Nocturnal seizure... what is it?!

Hi all

I am new to this forum, and just stumbled across it while trying to search for an explanation of something that happened to me. So my story is...

I was on holiays, so was fairly tired after a flight from Australia to New York. I fell asleep around 1:00am and my boyfriend woke up to me at 2:00am having a seizure. Apparently i looked like i was being possessed (charming, i know!). Basically it wasnt jerky movements, but i just lost control of every body movement - i wet the bed, my face muscles had gone all droopy, I couldnt talk except to slur a little bit, and I couldnt sit up. I woke up to the ambulance guys, then within 5 minutes I realised where I was and was starting to be able to speak again and by the time i was in the emergency room, within maybe 20 mins, I was fully functional again.

My MRI and CT scans came back totally clear and the neurologist said that it must have been a random seizure (ie he could see no reason for it except possibly exhaustion). My family has a long history of strokes but the doctors said this wasnt a stroke.

Does anyone know if this sounds like a type of epilepsy?? If anyone could give me ANY info that would be great. Anyone with a similar story etc.

Thank you so much in advance!!



Re: Nocturnal seizure... what is it?!

I have been an epileptic since age 2. From age 2 until age 35 I had seizures while awake. From age 35 on I have experienced nocturnal seizures. As a matter of fact/proof I set up my jvc camera and recorded my sleep habits. If I new/felt I had no seizure activity that night I simply erased, but about 6 mornings ago I had that feeling and my bedspread looked like a tornado had hit it. Sure enough, I found the seizure on my camera. As I sit here now I am copying it to a vhs tape.

Yes, it reads like a seizure. If you can, go see a neurologist. If he has doubt simply record your sleep patterns.  I was lucky to find a neurologist who I can trust and trust me.

I must admit, seeing this seizure is not like the others I have seen. I have viewed my seizures after docotrs recorded them prior to possible surgery. I have been lucky to never loose control of my bladder. But in this recording I now understand why I have neck arthritis, tmj problems, and spinal problems. I to am making facial expressions and bending back and then making this awful sound. For me the only good thing about nocturnal epilepsy is the fact I now have a drivers license. But, I only drive when I feel I did not have any seizures.

 Good Luck, E_Loner

Re: Nocturnal seizure... what is it?!

Hi Alana-

It also sounds to me like a seizure.  I don't necessarily have too much information to tell you with the exception of my actual story, which I wrote and you can read just for a bit more info of what it's like (and the dumb things I did at first!)

Hope it helps a bit.


Re: Nocturnal seizure... what is it?!

Nocturnal seizures /during a nap are the only seizures I have and I only get them weeks sometimes mounths apart.  But they hit me like a truck in clusters. And I do something to my eyes almost allways my right one like I've rubbed it hard or it gets stuck wide open and it dries out it hurts something awful for 1-2 days. No one has been able to help me yet. My lastest doc seems to think from what I do the day before or eat that a drop in blood sugar my be the cause so we've started working on that for a trigger. My last gap in having a sez was about 11 wks. So right now I'm cutting back on the carbs all sweets and making sure I eat something before going to bed, natural peanut butter seems to work. The doc told me to avoid dairy products, and all caffine. It's a pain but if that's my cause hellaua! 

Re: Nocturnal seizure... what is it?!

I have nocturnal seizures. My first one was on July 20 2004. I was vacationing in Virgina Beach when I had a seiuzre at 6am. I was rushed to the hospital across the street, but while I was there, nothing turned up.

I went back to vacationing until a week later. After my older complained about me making noises in the night, I was readmited to the hospital. For two days I was monitored and every night, I had about 3-4 seizures a night. They consisted of grunting in the throat, twitching of the arms and legs, and at the time, my eyes were fluttering and I was some mild muscle spasms.

After being on Tegratol for 4 1/2 years, my seizures are very well controlled (not sure if I have them anymore) but that's my story as far as nocturnal seizures.


BUS 374 Idling at 500 RPM Diagnosed at 16 with complex-partial; now simple-partial 

Love Computers, Gardening, Photography, Biking, Snorkeling and Scuba Diving

Re: Nocturnal seizure... what is it?!

When I first started working in the field of EEG a Prof. said every living being has a seizure thresh hold.  One day a farmer came into the hospital to have an EEG.  He described what seemed to be a seizure.  He said he had to get his crops taken care of and hadn't slept for 2 days.  When he went to bed for a good rest he had a seizure!  The Neurologist said to the farmer that he had 2 sons that could help him next time.  The farmer as far as I know never came back.  The farmer hadn't had enough sleep, food, and hot weather. 

All humans have a seizure threshold!  loved that comment!  I worked in the field of Neurology for 15 years and will never forget that farmer who just simply overworked himself!

When I have done flying from Europe and layovers in London. I fortuantely live in the East Coast, while others have may have to travel another 5 hours to the West Coast! I have had seizure activity when I get home or on the plane.  I have my back-up medication when I am traveling.  My seizures go askew.  The airline staff have been very helpful along w/ the airport staff.  The medic-alert bracelet is helpful when you can not speak. 

I think I covered that from A - Z!

Re: Nocturnal seizure... what is it?!

Hi, I'm LaVerne

As a child.  I was in a abusive family.  I was stabbed in the head when I was 6 months old.  I don't know if this is what caused my seizures but, I have had seizures all my life that I can remember.  at first, I did not know what it was.  this thing that happened to me every night I slept.  I am now 49 years old and about to by 50 in less that 30 days.  I never knew why I couldn't remember things, or sometimes I stumble when I walk.  i'm parrallized in my sleep, anytime I go to sleep.  whoever now, it has happened when I was out on a date, and at a family member's house.  I am very stressed.  I started college, I work at night, and I have family problems.  I'm scared a little.  my doc put me on some meds.  I fear I may forget to take my meds sometimes.  At least I know now what the issue is and not the silly answer I was given when I was a little girl.  My sister told me the devil was riding my back.  A friend said I was being visited by demons.  I am blessed to be alive and happy too.

Re: Nocturnal seizure... what is it?!

I'm new to this also despite just turning 70 and I invite you all to the house for a dose of California medication (Sierra Nevada, made just up the river from here). We're in some club!

About four years ago I awoke to the sence there was smoke in the room. I was drenched with sweat and couldn't ably stand up. In the next half year, I had about 6 more episodes of diminishing serverity. None since.

In early Feb, 2010, I had a Grand Mal event, or so my wife and the Volunteer fire department tell me. I bit thru my lip and dislocated my shoulder. The fire chief called the Sheriff to restrain me as a precaution before giving aid.

I was transported to the local hospital, scanned, IV'd and diagnosed as having a Gran Mal Seizure.  I have no memory of the event itself, I contacted my Primary Care MD who referred me to a Neurologist who tested me and my Medicare to the tune of about $20K for EEG and MRI... the MRI was done in Chico, CA in a palatial facility that made me wonder: "... this would be great for Bill Gates, but for little old me??????"

AND, the Neurologist warned me NOT TO DRIVE! California DMV was notified of my event and I have submitted the requisite reports, but I am awaiting the determination. Have you thought of living without driving in modern America? I'm on Keppra, have been a cooperative patient etc, and I hope CA DMV will trust me to get behind the wheel again.

 I must also note that I am having big-time reactions (I think) to Keppra). Black depressions. Suicidal impulses that my MD's assistant interrogated me about as soon as I mentioned Keppra. I suspect this is common. Is it. fellow epileptics? BTW, an epileptic these days is anyone with more than one seizure event.

I have additional heath issues within the last two years (anemia mainly), but I have been an athletic horse for the last 25 years. Marathons, Senior Softball, weights etc. What-the-Medicare is going on?

Hang in, y'all. I'm trying to take this seriously, I mean the DMV part, it doesn't take much Googling to find case after case of epileptics who did indeed drive into a tree. These things happen like a lite switch, I'm told.

be safe & be well.



Re: Nocturnal seizure... what is it?!

Hi everyone.

 I started with the nocturnal seizures about 10 years ago. When they come, I get what I've just discovered is called an 'Aura', which apparently is a kind of warning sign. Whatever it is, it's always absolutely terrifying. When I first developed the epilepsy, I was about 15 and due to the nature of the 'auras' I passed them off as nightmares. So did my mother and father. That was until, during a particularly frightning one, I screamed out "SOMEBODY WAKE ME UP!!!!" The next day, my mother told me what I said, and all I could say to her was " heard that?". That was when I knew that these seizures were very real.

  I was diagnosed and put on Sodium Valporate to treat the seizures, with the doctor assuring me that they generally go away for people at that age. It didn't...

 What led me here today was that last night was particularly bad. I didn't actually HAVE a seizure, but I felt as though I was going to. The familiar flickering of my vision in the dark. The overwhealming feeling of dread. I had to get up, and so I thought I'd do some research, since I seemed to be the only one I knew who suffered with this kind of epilepsy.

 Typically, the seizures will occur as I'm either falling asleep or waking up. The 'aura' I described is overwhealming and, even after 10 years, still so frighening that at 25 years old I scream out. It's hard to describe, since it tends to differ from time to time. There's always flickering of some sort in my vision, which intensifies as it goes on. I get a strange feeling of dread and displacement. Like "this is my room, but something's not right with it...'. The walls and ceiling seem to close in as it intensifies, and sometimes I see patterns on the walls, and objects that shouldn't be there. Since I'm waking up into this, sometimes I have known there to be things from whatever I was dreaming about at the time (in the worst cases, In the case of one of the earliest ones I can remember, try having a nightmare about dogs chasing you and then waking up in a room full of dogs!). Then, amidst all the chaos, I just lose time and next thing I know I'm coming round and can barely string a sentence together, or take in my surroundings. Then I fall asleep again (or 'pass out', rather). When I come around for the 2nd time, my body aches. My head aches. I feel weak.  And in the worst cases, this can last for days, especially if I should fall from my bed when it happens (nothing like waking up stuck to the carpet because you bashed your face on a desk of drawers on the way down). I've been told that my seizures can last anything from 2-15 minutes. Sometimes longer too, but I'll have to take their word for that.

  While, for the most part, the medication works well, I'm still getting these seizures. And lately I've been getting a lot of the familiar warning signs.

 I know this post seems long, but I've never really been able to relate to anybody about this. Has anybody on here experienced seizures like mine? I'm sure I'm not alone.

 Many people who get nocturnal seizures apparrently know nothing about it, and just "Wake up" in their rooms or in the hospital (in some cases mentioned on this thread previously). Does anybody suffer with the same things as me?

 Take care,

 Nathan Canavan


Re: Nocturnal seizure... what is it?!

I started getting really really dizzy out of nowhere sometimes in the summer of 2005. I also talked in my sleep and moaned and cried a lot. I went to the doctors several times and they just gave me medicine that didnt work. Slowly things got worse. I started hallucinating sometimes and my boyfriend at the time said I would talk and move around like crazy in my sleep. I had moved out and was on my own in the summer of 2006. One night after work I felt really sick and when I got home I layed on my couch and just felt the walls closing in on me. Thats all I remember before "coming to" again and shaking and slapping my hands together till I fell off of the couch. My awareness was only like three seconds but then I was ok and started crying. The docter in the ER said I might have nocturnal seizures. I continued to have worse symtoms like waking up somewhere else and feeling exhausted when I woke up. Then I stared getting these head pains on my left side, but they werent headaches. They were a stabbing sensation that was very painful. I also started having "episodes" where I would get really confused, and sometimes I would even forget who I was or where I was at.  I saw 3 neurologists and two ear doctors. Nobody found anything but two tried to tell me I had migraines! I had a new boyfriend at the time and he went with me to a neurologist someone had recommended to me. I went and had my second EEG and fourth MRI since it had happened. The sleep deprived EEG showed lots of seizure action. The doctor was amazing and he explained it all. I have complex-partial seizures but they are a little different than most. I have had a few more seizures in my sleep, but most of my seizures are just me being very silly, confused, and sometimes fearful. I have been on Carbatrol for a year and have improved a lot. When my hormones change they get worse. Also if I dont get enought sleep or get stressed they get worse as welll. It took me 2 years to find a good neurologist, several test to have one with seizure results, and a year on medicine to get it under control. Keep searching online for answers and keep searching for a good neurologist. Mine got worse before it got better but my life is finally back on track after 3 years!

Re: Nocturnal seizure... what is it?!

My nine year old son was diagnosed with benign Rolandic Epilepsy. His seizures only happen while sleeping. Usualy within an hour after falling a sleep or once upon waking up. He had one once within a minute of falling a sleep. They say he will outgrow it by puberty. He has had numerous eeg's and all but one came back normal. He even had a 3 day veeg. Normal.  he also has Arnold Chiari Malformation. the MRI he had after his first seizure showed this. He shows no symptoms of the ACM at this point. A lot of people have that without ever showing symptoms. Hope you get some answers. Email me if you would like.

Re: Nocturnal seizure... what is it?!

Hi Alana,

Nocturnal seizures are convulsions that occur in sleep, usually in the REM stage of sleep from my own personal research into it. It is usually brought on by certain stressors. I have had nocturnal seizures that are brought on by lack of sleep and mental/physical exhaustion which also sounded like your situation. The first onset were perpetuated by my full time job, marathon training and studying for my MCATs. I started convulsing one night and awoke with my tongue completely chewed up, a massive migraine and my muscles all achy.

Do not let your treatment fall by the wayside and do yourself a favor by being compliant and proactive in your treatment. The side effects of the drugs are intolerable, have the dosage titrated to minimize the effects. The doctor does not see eye to eye with you- get another doctor. I actually had a doctor in the past say to me, "I am going to ask you to get another doctor since you refuse to be compliant." He ignored my complaints that the Tegretol made it difficult to concentrate.

You have only had one, but seizures beget other seizures. I thought I could "control" them myself by getting more sleep... I was wrong. I ended up putting off grad school until now because the seizures that were perpetuated by my anxiety forced me to keep delaying my exams. Everyone has the potential to have a seizure, but once the threshold has been lowered- it is really difficult for the brain cells to resist another convulsion. In my experience, most patients don't die from the seizure itself, they incure other accidents during the seizure. Don't discount the potential for a severe accident.

Take care!


Re: Nocturnal seizure... what is it?!

Hi Alana,

This is my first time posting.  Something similar happened to me twice this year out of the blue.  Have you had another nocturnal episode like the one you had last year?  What has your doctor said?  Are you on any meds?  My appt with the doctor is in a few days and I'm trying -to prepare myself.  Thanks for any info.




Re: Nocturnal seizure... what is it?!

Actually I just joined because I have nocturnal epilepsy and so that I can talk to other member with the same issue.

When I read your question, it was a total description of what goes on with me when I have a seizure during sleep. The only difference is I don't look control of my bladder and wet the bed, but the biting the tongue, the disoriented state of mind is totally what happens to me.

I have a neurologist that I am seeing and actually my epilepsy was inherited from my father's side of the family.

My brother and I both had these seizure when we were both infants, then quit having them when we were close to a year old. I'm the only one in my family that has had a seizure past the infant stage.

Last night/this morning I had a nocturnal seizure and I'm pregnant. The lack of sleep that usually comes with being pregnant is clashing with the sleep I need to remain seizure free.

Your doctor should be giving you tests like the EEG which will monitor your behavior while you're sleep deprived or asleep. Mine have always come back normal but just to be safe they want me to get as much sleep as I can.

I'm luckily on the lowest form of medication there is for epilepsy, Keppra. When my brother and I  were babies though they had us on phenobarb (not sure how to spell).

But the Keppra works when taken everyday twice a day for me, so I hope you get something worked out with your doctor to where you won't have to worry about having another seizure and get it under control.

Best of luck! 

Re: Nocturnal seizure... what is it?!

My name is Lindsey and I was diagnosed with epilepsy when I was 10.  At first I had Grand Mal seizures during the day, and after a few years I was able to get them under control after going through about 6 different meds and combinations of them; When I was on Keppra for the three years of my high school career I was seizure free.  But one day driving home I had an aura and pulled off the road in time before I had yet another partial seizure.  It seemed that with each medication I switched to, I would eventually become immune to it somehow. 

Once I started college in 2007 my sleep schedule and eating habits and everything changed (I wasn't sure if it was due to the meds).  One night sometime that year I began having nocturnal seizures in addition to the partial day ones.  However they were never of the same intensity or duration.

I still have seizures day and night (more often at night though).  I never wet the bed or bite the insides of my mouth but they will sporadically wake me up.

 Just my advice from what I've experienced, don't stay up too late, sleep in too late, and exercise as much as you can on a regular basis... a regular sleep schedule and relaxed muscles keep my nocturnal seizures to a minimum and help me get a good night's rest.  Good luck!

Re: Nocturnal seizure... what is it?!

 I would sometimes have nocturnal seizures. When I awoke, I would be very sick to my stomach, be wet from losing my bladder control, sometimes with a sore bitten tounge and the fear that something has happened. My husband would tell me that I had had a seizure. Losing bladder control and tounge biting happend sometimes even if I didnt have night seizures. Since having right templobe surgery in '07, I have been blessed to not having any since. Take Care, Becky

Re: Nocturnal seizure... what is it?!

My God it does me good to know that I'm not alone in the world. For the longest time I thought I was some kind creature who needed to be put down and now I see that I am not alone in this.

Re: Nocturnal seizure... what is it?!

I have nocturnal epilepsy as well which started when I was 16.  I am now 44 and have been seisure free for almost 12 years, thanks to God!  They are terrible, and it helps to know you are not alone in this!  I have been taking Tegretol (carbamezapine) since I was about 18 and this has worked wonderfully for me EXCEPT for the fact they brought on panic attacks as a side effect.  As well, for the past year I have been having some serious problems with the twitching and falling down, but no actual grand mal seisures.  Anyone else experience a similar thing?  I am wondering if it is because I am entering menopause, or if I am becoming immune to the drug. 

Something all of you haven't mentioned that I have experienced is that after a seisure I would have a temporary memory loss, so severe that at times I didn't even know my own family.  It would slowly come back to me over a period of hours.  As well, it would feel like my limbs were made of lead after a seisure, and I would be very stomach sick. 

I read somewhere that Tegretol is not the best drug for Epilepsy that includes twitching or involuntary body movements.  Has anyone else come across that?  I know you can't always believe what you read online, and I am curious as to how many out there have read this as well. 

 I am scared to switch to another medication as this one has been working so well for me.  Has anyone else switched and if so, how did that work for you?  Glad I found this forum.  Hang in there folks, it is a very tough thing to live with but when you find a good doctor and treatment it gets much better!

Re: Nocturnal seizure... what is it?!

FruitedPlain - you can do some quick searches on this forum and find lots of references to people having trouble with Keppra.  I seem to read more negatives than positives about it.  Some have "Kepprage", i.e. irritability to the point of bouts of rage.  And some have deep depression as well.  Talk to your doctor and see if there might not be some other medication that might work better for you.

I'm reading more and more about people finding that smoking marijuana seems to help as well, but not sure how you feel about that.  It's legal there in CA, right?

Keep up with the exercise, staying active, etc.  It is a good way to work off the stress of the whole seizure reality show we call our lives.  Long as the anemia doesn't get in your way.

Take good care!


Re: Nocturnal seizure... what is it?!

CA will vote on marijuana legalization this fall with Prop 215. I say "high time!" (forgive me)

I'm going to start looking into this though I have a long-standing aversion to putting anything into my lungs after 20+ years of tobacco addiction. In my decades of long distance training runs with the great San Jose Quicksilver club, you could always identify the former smokers as they climbed the hills: they wheeze a little.

If pot legalization happens it's expected to devistate the economy of the Trinity Alps region of CA, not just from the illicit grower side, but the enforcement compliment employed there. Some estimate a 40% income drop.

As mentioned, I have to hang in with my Keppra to demonstrate due diligence for the DMV, but I want to get off this ASAP. My MD would probably give me an MJ-permit as she was giddily offerring me anti-depressants when I mentioned my Keppra side effects. I've so far declined the offer hoping I can get thru life without a drug induced happy face, but we'll see.

thx for the input


Re: Nocturnal seizure... what is it?!

You are welcome.  I also would have an aversion to the effects of the smoke in my lungs - I totally understand where you are coming from.  But assuming so many posts on this forum are true - RE: the relief people have found using MJ for their seizures - well maybe that is another avenue to consider.  But yes, if you can keep on keeping on with the Keppra, until your doc feels you have truly given it a shot, that might be good as well.  If the side effects get too awful, though, don't be afraid to say "enough is enough".

Hang in there.


Re: Nocturnal seizure... what is it?!

my married daughter in NYC (where they know as much about these things as they do in LA), reminded me of the soothing possibilities of injestion, ie, brownies! My frau already makes the best straight brownies in the world, there are indeed many paths to enlightenment.

BTW, long ago I lived in Kansas, "mental health capital of the world" via the Menenger Clinic and several state facilities, and it seemed every third person I knew had had electro-shock therapy. The basis for this procedure: to induce seizures since epileptics were free from mental disorders (they said).

My same frau observing me writing this wonders if verbosity is another Keppra side-effect.

regards again

Re: Nocturnal seizure... what is it?!

I'm new to this forum too, as my ten year old daughter has just been diagnosed with benign childhood epilepsy. It started for us in the early morning hour with a grand mal or (tonic clonic) seizure. Scary!
The emergency room doctor was fantastic and did the CT and the blood work and then sent her for an EEG (the test of choice for Epilepsy.) The EEG was done even before we had our appointment made with the neuro. I don't understand why you weren't given this test. It told us so much about our daughter's condition. You may want to question this with your primary care or get a new neuro.

Re: Nocturnal seizure... what is it?!

What type of medication is your daughter on?

My son is on Keppra for BRE. email me at

Re: Nocturnal seizure... what is it?!

currently we do not have her on any medication. The carbetrol she was on had too many side effects. Since she only has an average of 1 seizure every two months between 4:30 and 6:30 am we decided that we could monitor her and be there to assist her when she had the seizures. At the time of her diagnosis the Doc told us that there was a small risk of dieng from a seizure but that seizures in themselves if lasting 1 minute or less would not cause any lasting effects. Iv'eread recently that that view has changed and that there maybe become lasting cognitive and memory loss. Is Keppra tolerated well ? What are the side effects ..






Re: Nocturnal seizure... what is it?!

I found your posting after joining this forum looking for answers on nocturnel seizures. My daughter is also ten and still having nocturnel seizures one every two months. Always between 4:30 and 6:00 am. We have kept her off medication and try to manage her sleep hygene and stress management. We tried tegratol and the side effects were terrible. I'm reading now that there is some evidence that seizures can cause brain damage, however not in all cases. I'm curoius, how is your daughter and what have you learned since your post in 2007 ? We are struggling with outting her back on meds after reading the scare on brain damage .


Re: Nocturnal seizure... what is it?!

I forgot to comment on one other thing, it sounds like your seizure was a Partial Siezure and not a Generalized one you might look both of those up in google. It seems that there are many different types of epilepsy and syndromes and many different kinds of seizures.
I'm trying to wade through the world of information to educate myself.
Like you, we are watching and waiting to see if there will be another seizure, which grinds on my nerves!

Re: Nocturnal seizure... what is it?!

Stress and lack of sleep can both onset a seizure, but for someone that has never had a seizure I know it makes no sense. I had my first seizure fifteen years an adult, and none of the doctors could explain it. However, if you wet the bed during the episode that is a sign of a large (grand mal) seizure. When I arrived at the hospital I wasnt fully aware of what was going on either, it took about two hours to get back to my old self. The ER dr. asked me who the president was and I said "Jimmy Carter"...haha, this was in 93!

I have been through test after test and they have found no physical evidence of Epilepsy, yet diagnosed me with "Adult Epilepsy" in which they can not explain the reason why I have them. It is very frustrating either way.

Good luck to you

Re: Nocturnal seizure... what is it?!

Hi, sounds almost exactly like the seizures I have. My doctors do not seem to want to find out the why or anything, they just want to medicate me so that I can not function properly. My MRI and CT scans came back normal when I first started in 97, I was on meds for 2 years then was weened off. I was med and seizure free for 7 years and just started having them again. You are lucky that it does not take you too long to recover. It can take me up to a week sometimes before I feel normal and when I bite my tongue it takes forever for it to heal.

My doctors say that night time seizures happen to some people and can eventually lead to day time seizures. Great news, right? Wish I knew more, but it is a relief to see that I am not the only one who has these types of seizures. I am in the process of finding a doctor who wants to help me and not just medicate me, if i find something out I will let you know. One thing, if they put you on medication don't stop taking it. I refused to accept this the first time and did not take my medicine all the time which led to me almost loosing part of my tongue. Until they say you don't have to anymore it is always good to be safe because you never know when one is coming.

Re: Nocturnal seizure... what is it?!

First let me start by saying, I am very sorry to hear this happened to you! It does sound like a seizure to me I would ask a doctor about an EEG maybe a family doc can help you about by referring you to a neuro. If you feel like something is wrong don't let anyone get in your way of finding out what it is. Be persistent, I hope you find out what is going on. Good Luck


Re: Re: Nocturnal seizure... what is it?!

I'm 26 and just over 4 years ago I had a seizure while I was sleeping at night. My girlfriend was with me at the time and called the ambulance, and all I remember from that night was going to bed and then being in the hospital the next morning with no clue as to what was going on. I did know I was extremely sore and my tongue was cut up though. I went through all the tests and the Doctor was unable to find anything wrong. One month later I had another seizure, sleeping at night, and once again I found myself in the hospital the next morning in the same state I was afer my first one. I went through all the tests again, and everything came back normal. He put me on medication and I've been seizure free since. I visit a neurologist twice a year and this year I will seeing a new neurologist for the third time.

Re: Re: Re: Nocturnal seizure... what is it?!

What you are going through sounds exactly like what is happening to me. I started having seizures when I was 13 (right before my period). I was put on medicine and was seizure free until about two years ago when I had one driving. Thankfully no one was hurt. However this summer has been horrible. I am on four different times of medicines (some only when I have my period) However now I am having seizures when I am ovulating. My last seizure was the weekend of August 17/18 when I had 7 within 24 hours. I don't remember anything. My EEG was clear. I see my neurologist tomorrow (9/5) but I am at the end of my rope. I hope you are still seizure free, but I would love to know what meds you are on.


Re: Re: Re: Re: Nocturnal seizure... what is it?!

What's the first thing that emergency personnel do when they take you to the hospital? That's right they put an intervenious in you and HYDRATE you. Then you feel better when you are in the hospital because they are constantly pumping liquids into you. Then they can't find anything wrong with you, but they medicate you anyway just so you feel like they did something. Do you know that most people are dehydrated all the time? I have been having Nocturnal Seizures since I started perimenopause and they really got bad with full blown menopause. So one of the common threads here is hormones. This epilepsy site says that there was a study done in 1999 that says that 20% of women going into menopause start having seizures. It also says that seizures along with your periods are called catimenial seizures. So if they know there is a connection why have I been unable to find a neuro who knows about the hormone link. I even bought the book "Women's Moods" and gave it to my neuro to read. It is about the connection between your brain, hormones and stress. I am feeling much better since I am drinking a lot of water and exercising and I am now "through" menopause. I am hoping to get off the seizure meds soon. I probably should have been on Hormone Replacement Therapy for the past 7 years instead, because the Topamax did NOT stop the seizures. Good luck to all of us.

Re: Nocturnal seizure... what is it?!

Hi, what you had to say really got to me.  I am 40 years old and started having nocturnal seizures when I was 18.  I have never had a seizure when I was awake (thank god).  And I did not know that this was such a common event.  I have never met anyone else who has had Nocturnal Seizures.  I have been seeing a nurologist since I started having them and had countless tests done but never found anything wrong.  Its very frustrating.  I was on dylanton for many years than taken off and switched to TOPAMAX which I agree doesnt seem to work.  I fineally took myself off because my nurologist wasnt listening to me that the meds were making things worse.  All he seemed to be concerned about was if I was exercising??  Anyway since I had gone off the meds I have had 2 in the past year.  What scares me though is what you said about having more and more intense from menopause.  Truthfully I dont think the nurologists know even half of what they claim to know.  What I know is they are scary and I am tired of being told Nothing is wrong!!!  And I am also tired of taking medication that doesnt work.



Re: Nocturnal seizure... what is it?!

I have had seizures since I was a child, and they always seemed to come in clusters (3-7 seizures over a period of 3 or 4 days). The first one always happened in my sleep, so that gave me a warning to take it easy for a few days. If I went 2 days without having a seizure, I knew they were over with until the next month. Sometimes I would wet the bed and sometimes not.