Hi All,

I had my first major seizure, lasting 2 hours, 11 days ago. I've been disabled with CFS/ME since 1990. So, I've had 21 years of nocturnal myoclonus, petite mals, ataxia, "wild and crazy" insomnia and what we think are TIAs. Actually, I've had mild petite mals / staring episides ever since I can remember.

I'll be seeing a neurologist this week. I gave up on neurologists years ago because all I ever heard was that my neurological problems were "normal" for CFS/ME. ... No one ever mentioned gluten or other possible triggers back then ...

Back in 2005, I eliminated gluten, diary, corn, soy and chemicals and that helped quite a bit. I started walking normally in September 2006. I'm currently on a Paleo / low carb / low oxalate diet and I've actually been feeling "human" for the first time in many years.

I'm fairly certain that gluten was associated with my nocturnal myoclonus (NM), insomnia and ataxia. I'm a celiac (DQ2) so neuro problems from gluten would explain my reaction to gluten.

I'm not sure what's behind the petite mals and TIAs (?) but these always start out with what feels like a sharp blood glucose drop. The petite mals happen throughout the day everyday. The TIAs (?) last for an hour and drinking OJ and eating a meal never stop these. I have to shut down (lay down, eyes closed and quiet) and wait these out.

I have some ideas on what may have caused my major seizure, but I'm going nuts trying to pin point these. I KNOW I was being cross contaminated with gluten at the time because I'd already pin pointed some pistachios that gave me NM and insomnia everytime I ate them ... and I suspect that So Delicious coconut milk and probiotic drink are cross contaminated too but I'm not going to try these again to find out. But, I'm so sensitive that it's really hard to tell where the gluten may be coming from.

Frankly, I'm so sensitive to so many things (MCS) though that I have no idea what's behind this ...

FWIW .. I've noticed that when I eat Maverick Ranch steak I can taste the plastic that it's wrapped in and not the meat. I started tasting cans over 10 years ago so I'm not surprised. Um, I started getting winded more easily when I started eating these steaks several months ago, so this is a good possibility.

When I think of all the plastic in my life, eliminating it will be a huge problem. I eat quite a bit of wild caught fish from BJ's that's shrink wrapped and can only drink bottled water.

So possibly gluten or plastic ... BUT, I had just started taking some allergy meds because it's springtime here in FL. Benadryl, Claritin and Nasalcrom. Both Benadryl and Claritin made me feel like I was floating ...

SOOOOOOOOOO ... this brings me to using Klonopin. I've tried to eliminate all possible causes but I haven't slept well since this happened. I couldn't sleep last night so I tried 100 mg of Theanine and 100 mg of 5HTP which have always worked before but was still jerking myself wide awake (nocturnal myoclonus) at 3 am ... Frustrated I took .5 mg of Klonopin and slept like a log. And I'm actually feeling awake today ...

So does this mean that I've reached the point that I need Klonopin to sleep ? Would taking this during the day stop my petite mals ? Are seizure disorders progressive, even if we eliminate known triggers ? If so, what dosage would be appropriate ? I was on Klonopin at night only for 16 years for my NM and gave it up 4 years ago. Maybe that wasn't such a good idea afterall ...

Since then if I've had NM or insomnia, Theanine and 5HTP solved these.

Thanks in advance for your replies ... and sorry this is so long ... Marcia

Ps .. I found this info the other day but I can't post a link here yet so you'll have to google this ...

it's ... coping - with - epilepsy dot com and the thread is " gluten-docs-seizures-good-news"