Seizures while sleeping~

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Hello everyone,

I am new to this site... It is late, but I thought I would throw this question out -

Anyone have grand mals only while sleeping?

My apologies if I'm not using the correct verbiage (grand mal, to me, meaning the 'generic' seizures 1 hears about mainly throughout life - full body convulsions lasting a couple of minutes, eyes rolling, etc.).

This encompasses my seizure history, mainly. Quick summary: If I have a petit mal, it starts in my right arm, electric feeling, tone in the ear, still have full control. When sleeping, many times I wake up w/ what seems to have started as this right arm petit mal, but has 'spread' into my chest. Most of the time I can wake myself up out of them...seems if my level of awake/self-awareness is high enough, I can stop a grand mal from happening. However, there are times when I can not wake up enough. I then lapse into a seizure, experiencing/remembering far too much (scary!), & then next thing I know I am waking up very groggy, & so on.

Some may see this as a blessing in disguise, as I have never had a grand mal when I've not been asleep first. I suppose it is, but the experience is no less terrifying.

Thanks for the feedback,

Ache

Comments

RE: RE: RE: RE: RE: RE: RE: Seizures while sleeping~

Submitted by Lynn610 on Fri, 2005-03-04 - 10:46

Hey CookieWhy is this last post all crossed out? Did the web site administrators do this or did you? I think it has some good info in it. It is exactly what has been going on with me. I'd love to get a lady doc like yours to treat me. Lynn

RE: Seizures while sleeping~

Submitted by westcoast on Fri, 2005-02-18 - 18:31

Hi.Saw your message and can relate. I've had nocturnal only szs since 1993. Original cause of problems is most likely a cycling accident I had years ago; I fractured my skull and it's come back to haunt me.I have them every 4-6 weeks. I seem to have some control over them. If I go to bed angry or stressed, this has been a trigger. Too much exercise can do it too altho a reasonable amount on a daily basis seems to be the best "medicine" I have. I have a pre bed routine that includes 1/2 hour of yoga and writing in my diary. This seems to help too.I've tried several different meds w/o much luck. Am currently on 450mg of Dilantin (200/250).There are some great books on things you can do. One I really like is "Epilepsy, A New Approach".Good luck!Jim

RE: RE: Seizures while sleeping~

Submitted by cookieparty on Sat, 2005-02-19 - 06:30

Just adding my 2 cents to everyone else's here about nocturnal seizures....i am a 47 year old woman who has been described by my regular doctor as the 'healthiest sick person' he's ever seen. I walk 4 miles a day, lift weights, don't smoke and live by the Adkins diet for probably most of the last 10 years. About 2 years ago, I started having Gran Mals (or tonic clonics or whatever) in my sleep and on a scale of 10, they hit 11 plus. I "woke up" to my husband looking terrified and my bed soaked and my tongue bleeding and you know the rest....now I've had every test because the first guess the neurologist had was that I must have MS that was presenting itself in a weird way...nope that doesn't seem to be it. (I thought I would have trouble walking 4 miles a day with MS but they tested anyway).

Long story short, it is two years later and 3 neurologists and 3 medications, and I don't know how many tests, but the "FEMALE" doc I am seeing now says it could be hormones and that I probably had some sort of seizure issue in puberty and that as I approach menapause, I am seizing again in a big way. She says that I probably have had some sort of seizure activity all my life and it's so mild I have never recognized it ..like twitching, or zoning out, etc.

I am currently switching from topamax which makes me stupid (something I cannot handle since I want to keep my very good job) to lamactil which so far has been really easy to live with...we will see when the topamax is weaned out of my system..right now I am taking both at full dosage.

Wish you all luck in finding answers, the right docs, the right meds, AND the right people around you who don't act as if you have become stupid right before their eyes!!! I want to *(^((^%$ those idiots!!!!

Just adding my 2 cents to everyone else's here about nocturnal seizures....i am a 47 year old woman who has been described by my regular doctor as the 'healthiest sick person' he's ever seen. I walk 4 miles a day, lift weights, don't smoke and live by the Adkins diet for probably most of the last 10 years. About 2 years ago, I started having Gran Mals (or tonic clonics or whatever) in my sleep and on a scale of 10, they hit 11 plus. I "woke up" to my husband looking terrified and my bed soaked and my tongue bleeding and you know the rest....now I've had every test because the first guess the neurologist had was that I must have MS that was presenting itself in a weird way...nope that doesn't seem to be it. (I thought I would have trouble walking 4 miles a day with MS but they tested anyway).