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Has Anyone Here Experienced Status Epilepticus? It's When Your Seizure Lasts More Than 5 Minutes.

A MyEpilepsyTeam Member asked a question 💭
Montreal, QC

I'm on frisium (clobazam) to treat it. Was on phenobarbital but doc took me off because it changed my personality. I only remember having 2 in my life.

August 18
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A MyEpilepsyTeam Member

Jak994 yeah they can be nasty. If I take Lorazepam soon enough I can stop it. I'm finding the older I get the harder it is for me to come out of the seizure. I really pray research finds a way to help you.

August 22
A MyEpilepsyTeam Member

Margery, neuro said my seizures are Atypical (not textbook seizures). and he had a dozen other patients with seizures like mine. It's not a grand mal but I have had them turn into a grand mal. Imagine my brain as a "pinball" machine with the ball in play; bright lights, music, bumper bells, and the ball being kicked from bumper to bumper, suddenly the machine is pushed wrong and it "tilts". the lights go dim, the music and bells stop, no action but the ball is still in play with no action.
It's like parts of my brain "tilts". I'm conscious but I'm not sure where I am or what I'm doing. you could look me in the face and talk but I don't know what you're saying and I can't answer. I'm somewhat aware and can even remember some of it. can't do simple things, can't talk, and don't even know my name. the longer it goes the worse it gets. At it's worse I just lay going in and out of consciousness for a day or two, maybe longer. when I finally start coming out of it I'm very confused, and it take a while before I'm myself again. the symptoms are mostly the same, the severity of the seizures might change. never found a cause or reason for the seizures but has been confirmed and documented they are epileptic seizures.

August 20
A MyEpilepsyTeam Member

MargeryHarrop, I know the terminology has changed and I don't try to keep up with the changes. simple partial seizure lasts a few seconds, complex partials seizures can last a day or more, and grand mal seizures might last a few minutes or longer. that's that way seizures were explained to me, over 40 years ago. I'm too old to try to keep up with changing term. (lol)

August 19
A MyEpilepsyTeam Member

Yes. The last TC I had I'm not to sure how bad the status epilepticus was, but I had to have other meds to help stop it.

August 18
A MyEpilepsyTeam Member

I had 1 that lasted 15 min. in the basement

September 18

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