Almost all of my szs have been while asleep.  It went on for a long time and had no idea why until I woke up one morning and had physically hurt myself and sought medical attention.  It SUUUCKS BAD!!!!!  The memory loss that is.  I'm also disoriented for a long time like you are as well.  I've woke up in hotel rooms and didnt know where I was or why I was there. 

My doc has urged me many times to not drink, and even though the web is full of advice to not drink if you are prone to szs, I dont listen.  For ME I've not found a correlation between the two.  I've gone extended periods, like a month, and during that time had the biggest one of my life. 

I'll admit its probably not in my best interest to drink and, regardless of its they're causing u szs or not, I'm sure the drugs aren't good for you. 

I'm 30 years old been diagnosed with complex partial seizures and grand mal. The grand mals always occur during my sleep usually about 1 every month or so, but the complex partiasl on the other hand occur both during sleep and when I'm concious. I get a few complex partials a week. The complex partials are bad when I'm concious because mine tend to be violent. I do things like grab people, throw things and slam things down, I often yell obscenities at people, though the things I say during a complex partial are often nasty things it usually doesn't make any sense and people just think I'm crazy. I been medicated for the seizures since I was diagnosed but in recent times I had to change medications because my epilepsy has been progressive as of late and I'm going through a difficult time finding one that works well for me that doesn't have horrifying side effects. I think Keppra is poison for my mental well being but tha'ts just me, what works for some won't work for others. I can tell you from personal experience that lack of sleep is when I have the most problems with my seizures. Unfortunalty I also suffer from severe insomnia so that in and of itself produces loads of problems for me. The best thing you can do for yourself is to get yourself on a consistant routine with your sleep schedule even if that means working less and or making significant changes to your lifestyle.

I had my first noctornal seizure subday night. I have a sore back and right side and my left shoulder is somewhat sore. Today I went to talk to the lady that is in charge of our region for the Epilepsy Association of Calgary and she went onto all of her reseach sites for noctornal seizures, All I can tell you is they are usually tonic clonic seizures but not always, mine sure wasnt....but I did get hurt, it took on charastics of my regular complex partial seizures. Almost as if I was doing yoga which I do several times a week, the best rescouce she had was the epilepsy association of ontario website and found noctornal seizures. I dont the site but you can try googling it

I'm 30 years old and I was diagnosed with epilepsy at age 23.  The neuro said it's genetic and I will have to live with it forever.  I only had 2 grand mals in 7 years.  Saturday I had trouble getting out of bed, like I didn't have strength.  A few hours after getting up I realized I wasn't able to have a conversation with people.  Recognizing I fealt weird, I took an ativan (lorazepam) a few hours after being awake.  I went to sleep and don't remember the rest of the day.  I've taken ativan before and not had that reaction.  Even the following day was a bit blurry.  The inside of my mouth is chewed up but it's more towards the front.  I'm single so I don't know if I have nocturnal seizures but I do find myself strongly twitching  while falling or waking up from sleep.  Also, I do wake up sometimes having the insides of my mouth being lightly chewed up.  And.... I know how bad it is, I'm a heavy drinker.  I mix energy drinks with alcohol.  I used to suppress my emotions through alcohol and now I just can't seem to stop.  I'm absolutely freaked out!!!  I'm on 375mg of lamictal.  Is there someone out there that has the alcohol problem and possible nocturnal seizures?  I also black out while drinking.  I know it's a problem!  I became very depressed after being diagnosed 7 years ago and turned to drinking.  Does it sound like I had a nocturnal seizure?  Sorry if this sounds a little neurotic!  I'm just so terrified.  I know I should expect it with drinking so much.  I have an appt with my new neurologist this afternoon and I'm assuming he will do an eeg (I'm due for one in 9 months).  Bless all of you who have it so much worse then I.  It takes a strong person to deal with epilepsy.  And sorry for this sounding a little wacked! 

-Trish 

I had petit mal seizures at the beginning of perimenopause, age 46, then my first grand mal sometime after.  I've had several since and in full menopause now at age 48.  The first took me to the ER and some tests but I refused any medication as I only take natural herbs and supplements.  After seeing my naturopathic doctor I began taking neurotransmitters (amino acids) and stress related herbs and vits.  It made all the difference but as I weaned myself off, they re-occurred.  The seizures only happen a night and my husband tells me the next morning, as I don't know, that I have had one and wake up groggy and lose my taste buds for a day. I suppose it has somethine to do with my hormone level.  So I'm now taking all the natural menopausal herbs and vits I can find that relate to this time in my life and expect to avoid seizures as long as I take it consistently.  I don't understand folks who take all kinds of chemical meds with all those side affects.  Herbs are most effective and feed the body what it needs without altering the body chemistry and potentially causing damage.  Allopathic doctors are tied in to the pharmaceutical industry and trained only in chemical use.  Not for me!!

I'm new to this site as well as having epilepsy. I'm 28 and I had my first seizure in Dec. of 2009. I'm not even close to having it under control. To me and my boyfriend who has been present for most of my seizures, and who even had the opportunity to record a few of them, I have 2 different types of seizures. It's the tonic-clonic seizures that I only have in my sleep. Me thrashing around next to him wakes him up and then he rolls me on my side and shoves a t-shirt or something in between my teeth to keep me from chewing up my tongue too much more than I already had before he woke up. These SUCK. I fall asleep immediately afterwards for hours and wake up with absolutely no recollection of what happened...just achy all over, a sore bitten up tongue, and a foggy brain. I usually come-to hearing him calling my name over and over until I finally answer. Then he tells me I had a seizure. I've had a lot of these since I've been diagnosed. I had 3 in a row one evening a couple months ago.

I also have complex partial seizures but I only have these while I'm awake. No convulsing or tongue biting though. I just stare off at nothing, fidget my fingers around and grab at my clothing, and chew as if I'm chewing food or a piece of gum. I have a recording of me having one of these. My boyfriend recorded it so I could see for myself. He can call my name and I'll look at him, but I never reply back...kinda like the lights are on but no ones home. There's nothing like watching a video of yourself just stare off at nothing unresponsive, or convulse uncontrollably with your eyes rolled up in the back of your head.

I've recently been switched from Lamictol and Neurontin - which didn't stop my seizures and also made me nauseous - to Lyrica and Depakote. So far I haven't had a seizure on the new meds but it hasn't been that long yet. Wish me luck!!

I'm new to this site but I just joined because my husband has seizures in his sleep.  It's been very helpful to read all of your stories.

He had seizures at the age of 10 and was on medicine until 19 when they weaned him off.  He has been seizure free for nearly 21 years and then just had a gran mal in November 2010.  Ever since we can't figure out what's going on.  He is on 3000mg/day of Keppra and 1200mg/day of Trileptal yet still having seizures in his sleep throughout the entire night.  There was a period of about 2 or 3 weeks where they seemed to be decreasing, but now they are increasing in frequency and seem to be getting worse.

During our last refill the pharmacy told us they changed manufacturers for Keppra (he is on generic) and so I wonder if this could trigger it.  Anyone experience anything similar?  Just trying to find a patter. It's been over 6 months since the gran mal and he's still having auras and the seizures at night.

will me getting them in my sleep just started. Ive been on my med changed a lot about my life style so that i can try on preventing them, now i'm scared since there different ones involved and coming more frequently, i'm only 27 and i still got a lot a head of me

Ive had  Partial Complex seizures for 54 years, and my seizures seem to come between 11pm and 7am.  I can't seem to get more than 4 hrs of sleep per night.  I spoke to my Dr and he gave me an antidepressant named  Celexa to take at night hoping it will make me drowsier and sleep longer but it is of no use.  In the day hours as long as I'm doing something and keeping my mind occupied Im seizure free.

The two meds that seem to work well together for me is Keppra and Trileptal. What triggers seizures in me is Depression, Anger, Tension, Stress, Overanxiety, and constipation. People say I'm emotionless,but to prevent seizures, I've sort of trained myself to not allow anything to bother me.  I remain cool, calm and collected and nonchalant most times.  I've become an Introvert, because trying to fit in with these high anxiety people just doesn't work. Just me and my cats.  I read a lot, watch tv, write, draw, do puzzles and things that are not group oriented. 

When a seizure does come at night, once I wake up its not easy to go back to bed.  I never even know I have had a seizure unless someone else tells me that last night at such a time you had a seizure.  I have no idea that I had one. Sometimes the only way I might know is when I'm out of it, I wonder why am I in the living room at 3am when I went to bed at 11pm? How I got in there I don't know?  but mine are always between 11pm and 7am

Hello internet.

Firstly, I wish to say sorry if I'm on the wrong road here, I'm just trying to understand the problem, which I'll describe - hoping that someone of you can label it or maybe point me to someone who can.

About 90% of the times I'm going to sleep, which can be any time of the day since I'm always very tired I start to "hear" things sounding like electric bursts or like someone hammering a wall very far away. Then I feel like I'm falling or flying or rolling, like I've lost all sense of balance. My jaw use to start to hurt a lot at this point and I try to relax and wake up - I'm totaly conscious during this, and I'm capable of thinking about anything, often I use to try to wake up but it's no use - when I breathe it feels like I breathe through closed teeth and I'm incapable of talking or, as I frequently try - screaming. I try to open my eyes, and I try to move. I can open my eyelids but my eyes are fixed at their position (looking upwards). I can't hold the eyelids open more than a few seconds. This event hurts, since it feels like my body's being stretched out or lifted all the time, when I "wake up" i use to do that with s short scream, waking up my girfriend who hasn't noticed anything.
At first I thought it was just a weird dream, but it's happened for about eight months, repeatedly, each time I'm falling asleep, often a few times in a row before I can sleep properly. When I wake up after this, I'm so tired I can hardly move, and my head aches as hell.

If someone knows ANYTHING please help me.

I'm 19 years old, diagnosed with ADHD. This sleeping problem has been going on for about eight months and only when I'm falling asleep. The whole thing goes on for about a few minutes or so, or so it feels - if that's any help.

Thanks in advance.

At least 99% of my seizures occur during sleep.  For the last 5 years, anyway.  Are you conscious during yours?  If you are, and you find them painful (as I do), express this to your doctor, because it can make your situation worse.

Consciousness aside, you will not get a good night's sleep every night unless you are on a drug that works well with you.  I only recently found a drug like this, and I've been sleeping better than I have in the last 5 years.  I still have about 12 small seizures/week (all at night) but it's better than the 30 I was having previously.  So that is your step one.

Correction: Your step one is to ditch the alcohol and drugs.  Not that I am an amazing role model, but I do make it very occasional.  This will help.

Also, don't know your climate, but make sure you're not too cold and you're well-fed.  Any weakening of the body makes you more susceptible to seizures.

Let me know how it goes! (kelly.ella.hall@gmail.com)