Is this even possible?

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I have recently started actually feeling my Grand Mals. I have no control over my body, but this is what I feel: I start out feeling funny my head spins, my chest starts to burn and I usually smell marshmallows. I take the time to get to a safe place I usually have about a minute to do so. My knees move up and my toes clench, then my arms bend and go near my chest straight up and down then my fingers clench. My head turns to the left and my breathe starts catching in my throat. Then my body starts to jerk violently and I can no longer breath. My hearts starts to race as I begin to panic and since I am unable to breath. Someone comes in the room and calls me asking if I can hear them and if I'm okay. My lip is starting to sting from biting on it so hard and I'm still shaking and still can't breath, but I so desperately want to respond to the voice asking if I can hear them. Finally after anywhere from 1 minute to 20 minutes my body goes limp and I finally can catch my breath. I am in so much pain then everything goes dark. Sometimes I sleep for 20 hours at a time and its impossible to wake me. This is very scary. I only know the time period because of looking at the time when I an fully aware. I've had Grand Mals that have lasted 30 minutes, an hour even up to an hour and a half I was in the hospital for those though.
 

Nakamova

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Yup, it's possible. It sounds like your seizures are slow to generalize -- that is, instead of all the lights going out at once, one blinks off here (the dizziness and the burnt marshmellow spell, a simple partial), then another few lights go off there (the "tonic" or tensing phase), and then a whole bunch more go off (the "clonic" or jerking phase), and then all the rest of the lights go out and you lose consciousness.

Are you on any medication right now? If so, then it sounds like it's time for a change in dose, or to a different med altogether. You shouldn't be seizing for that length of time, all the more so if you are conscious for the painful parts. One of the very few saving graces for grand mals is that most of us get to be unconscious while we're flapping around.
 

valeriedl

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I usually have one TC a year. All my others are simple or complex partials.

A few years ago I had a TC that I fell face down on the ground shaking. After the shaking stopped my body froze. I knew absolutely everything that was going on and what everything people were saying to me but I couldn't to a thing. I never had anything like that happen before.
 
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I am on Keppra 500 mg 2x/day and I need to get to a new neurologist, but right now I have no insurance. I think I may need to try to get another EEG and try out a different med or add something. I am not controlled at all. And I have several seizure types.
 

George__

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I am on Keppra 500 mg 2x/day and I need to get to a new neurologist, but right now I have no insurance. I think I may need to try to get another EEG and try out a different med or add something. I am not controlled at all. And I have several seizure types.

I feel so bad for you. Due to financial woes you can't control your seizures properly!?

That is seriously seriously (bad word)ed up! :(
 
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Yea it scares me because I am home alone most of the time with 3 kids. I worry about having a seizure in front of them. I also have other health issues (asthma, prematire ventricular contractions and suspected a-fib to name a few). It really sucks.
 

masterjen

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I had what seemed very much like "conscious TC's", but an epileptologist diagnosed 'tonic progressing into partial complex motor with Jacksonian features' - not an official category that exists in any way, but rather a descriptive designation for the seizure type. Now I only get the tonic component on the right medication - a huge improvement.
 
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