Grand mal seizure blues

it's been a while since i've logged on, but something happened to me that i wanted to share it, to see if any of you guys experienced something similar; it was noon a couple of days ago, when i heard knocking on the fence; i suddenly got up from bed (after being there for a lil more that 12 hrs omg! i know!) then kinda ran to the gate to open it, i did, after i sat down on the steps, then started to get a familiar tingling in my left leg, so i ran back to the house and into my bed, i started partially seizing at first, from my leg then it went up into my chest and arm, i tried my hardest to control it, but it was to no avail, it went into my head and i felt my entire left side have the worst muscle cramp ever, my left hand and arm turned completely the opposite direction OMFG! kinda like the exorcist and it HURT! like a mofo! to top it all off i was fully conscious, i have not been taking the trileptal for like a year, this pain i just had made me go out a buy more meds, im afraid to feel that pain again, i was literally feeling like i was gonna die, i even prepared myself for it, it was that painful! then i came back like normal albeit with a lil headache; i did a quick research on the web and it turns out they have a medical term for bending your body in the opposite direction it's called "hypermobility", have any of you experienced anything like this during your GM seizures? it's scary as hell not to mention PAINFUL!

Hi, Monztrrr, I was just thinking about you and wanting to start up that interview with you. I'm sorry to hear about the new seizure symptoms. I think what you are describing is hypertonicity or some kind of tonic seizure, but I'm hoping to hear from our members who have personal experience with this. Until they do, here is a web page with more information about all types of seizures that you'll probably want to know, but check out the tonic part:

thank you very much dancermom!!! =D it's a scary enough ordeal not knowing what the hell is going on, im thinking about buying a football helmet lmao xD and being helmet boy when my leg starts to go numb, so i dont bang my head hard against the floor or walls as i have before, i mean i dont want to get more messed up than i already am =( i started to feel the numbing on my leg earlier tonight, the episode lasted more than an hour but i rode thru it, no more coca cola for me EVER! and pizza for that matter; im beginning to realize that the food im eating is trying to make my AVM angry, and it's succeeding apparently, im scared enough to get a new diet, those damn seizures HURT! thanks again dancermom, looking forward to that interview =]


Wanted to jump in with something that you most likely already know about seizures. Of course, it's impossible to know exactly what triggers your seizures (even your DR can't guess).

But some common things/things to avoid:

1. Eat regularly and don't skip meals.

2. Moderation or abstain from alcohol (especially if you are on anti-S med, as they can impede the effectiveness.)

3. Get Plenty of rest and try not to Stress. Being tired and stressed can lead to S.

Like I said, you most likely know these. Hope it helps.

Ron, KS

thank you Ron, i sometimes skip meals =( because i didn't know they could be a trigger, i wont anymore NOW, my main problem being the things i used to do are harmful for me now apparently, i really dont get how i could have such a huge AVM and not have any symptoms for so many years, idk if its because im getting older, but its starting to botter me, i dont want to act like an old man by the time im 30, where's the fun in life if i cant climb a mountain or at the very least dance at a rave, i have abstained from alcohol 100% and i dont want anything to do with it anymore, even though my doc said it was ok, but i've still been getting the seizures ='(

Hi Mon,

It's not that skipping meals definitely is a trigger, but it can be sometimes for some people.

Sadly, I think every seizure suffer has to figure out, if they can, what triggers their seizures. So might find it, some may never find it.

If you feel a seizure coming on, laying down, and try deep breathing/relaxation exercises might be worth a try. If you feel them start, that's a good clue for you to take action. My wife's seizures (toward the end) were like that. The DR called them breakthru seizures, where she had a seizure even though she was generally controlled by meds.

Best wishes,
Ron, KS