I am 56, and have had these for about 5 years now (that I know of) I take 800mg of Lamictal and 100mg of Topamax daily. For some reason, mine have increased lately, having them about 3-4 nights a week, and 3 times this past week during an afternoon nap. I even had one (I think) while at a physical therapy appt. the other day. I was in a room alone, with moist heat on my neck, lying down on heating pad, for neck problems and dozed off. I woke myself up when I bit the inside of my cheek.

I have never had one while awake; they are always at night, usually very early am, usually aways wake me because of the pain in my tongue and/or inside cheeks from biting them. But I immediatly fall back asleep. And when I wake up I'm generally tired and irritable.

I guess I'm frustrated because I STILL after 5 years, find it hard to really believe these are truly seizures I'm having. I wonder if I really maybe could be just clenching my teeth or something. My Neuro says no, that I'm just in denial. Although, when I was first DX'ed, I wet the bed one night, that is what sent me to the Neuro to start with.
She says lots of people clench or grind their teeth and don't bite their tongue and cheeks at night.


I have never had one where I "chewed" my tongue and it bled or anything. Just "crunched" down on it. I can even hear the sound, it will wake me at times.

My DH wouldn't notice anything, he can sleep thru a tornado, so he's no help in seeing anything unusual. I'm really afraid to tell the Dr. mine have increased lately because she would most likely increase my meds.

I have been under a lot of stress, I think that is why they have increased lately. Hopefully that will level off soon.:(

So, if you have the Nocturnal variety, I would love to hear all about them. ANYTHING you can tell me. Your age, how long you've had them, what meds you take, how often you have them, just WHAT happens when you do have them, etc. ANYTHING at all you can tell me. :wave:

Sounds very similar to yours, although I also have daytime seizures (complex partial). I wake up with the inside of my cheeks or side of my tongue (usually right side) chewed, and feel worn out, sometimes with a headache when I wake up. Have also been incontinent at times (maybe 1/4 - 1/3 of the time), so keep a pad on the bed to protect the mattress.

A lot of people have nocturnal seizures- it's not weird, or anything- feels weird, but not a medical trainwreck !

Hope you find something that helps with these.

99 percent of my seizures have been nocturnal or the first thing in the morning before I've had my coffee. I can feel that I've bitten my tongue and my brain feels like it was hit by a train. I also have no memory of what I did the day before until at least 15 minutes after coming out of it. Never had incontinence.

Don't be afraid to tell your doctor, maybe they need to CHANGE your meds instead of increase. Your doctor is supposed to help you, remember that. Good luck.

I agree... talk to your doctor. Different meds might work better, not more.

Do you sleep or wake up on your back???

I was 46 when my first GM Seizure happened while under a lot of stress, as well as 9/11/01 happening just one month earlier...(I'm from NY State).
I've had a total of only 9 GM's.
I have taken 300-400mg generic dilantin (now 300) since the beginning.
They all happen in the early AM while sleeping.
I wake up on my back.
I've bitten my tongue until it bleeds.
I ache all over, especially my arms and legs.
I wake up within an hour of them happening... a little foggy, and remember NOTHING!

After lots of research, doctors agree that mine are caused by sinus trouble... which causes sleep apnea... but only when I wake up on my back. Something in my sinuses, just above the roof of my mouth way in the back, closes off the air.
Stress doesn't help matters either.
Surgery should correct seizure problem.

Good luck!

I agree, stress is the biggest problem for me. And yes, mine happen when I sleep on my back! That I know of anyway. I wonder why that is? I've heard a lot of people say that. What is it about being on your back as oposed to your side?

My memory is becoming horrible, I don't know if it's because of having the seizures over the years, taking the meds or a combination of both. It's like, which came first, the chicken or the egg.

My memory is becoming horrible, I don't know if it's because of having the seizures over the years, taking the meds or a combination of both. It's like, which came first, the chicken or the egg.[/QUOTE]


It is probably the Topamax. Memory problem is one of the biggest side effects and I can speak from experience, that my memory was shot as a result of the Topamax. It's much better now that I'm not on it (although not 100 percent of what it was prior to going on the Topamax).

Do an internet search on Topamax and Memory and read all about it.

I have had epilepsy since I was 4 years old,that is for 40
years.I can tell you that I had a GREAT memory for many
years(better than anyone else in my family).Then about
5 years ago I started having GM seizures along with the
complex partial and my memory went to h*ll,especially
after I fell once and injured my head very badly.I thought
at first maybe it could have been part of entering menopause,
but,my mother,gmother and many aunts that are all older
than me by at least 15 years and had already been thru the
change still have a better memory than I do.Good-luck,Sherri

The memory is a muscle that must be exercised. I learned this in college (I studied drama). I had an impeccable memory in spite of my epilepsy, the fact that I had grand mal seizures. I would memorize full plays, blocks of text, dialogue without a problem. It was part of my routine. Everyday I would memorize something, beit a poem, a quote, a monologue. I noticed memory and focus/concentration problems about a month after I went on the Topamax. I got cast in a play and blanked out mid-monologue. this has never happened to me before. It got progressively worse and to the point that I didn't have the confidence to audition anymore.

As I said previously, when I did research, learned of the memory/concentration problems associated w/ Topamax, I got off it and went on Keppra. My memory has improved greatly although it's not what it once was. I am hoping that eventually it will improve. I've only been completely off the Topamax for about 3 months.