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Message
Posted by Rebeca on August 31, 2000 at 04:44:48:

In Reply to: Re: This is new to me and I need advice posted by Joe on August 25, 2000 at 05:22:00:

Hi
I'm 31. When I was 11, I had my first grand mal seizure. (However, my seizures are preceded
by a visual aura- a warning that my seizure is coming. I had these auras as long as I can remember.
They just never advanced to a grand mal seizure. I never told anyone about my auras because
I didn't know that they were uncommon, "abnormal". I always liked seeing them. They are
quite beautiful.) So my parents, who had decent health insurance, took me to a neurologist after
the whole emergency room ambulance thing. Quite a scary experience for them, I'm sure. I saw
this neurologist up until I was about 19. I took phenobarbitol, a very low dose. When they rarely
tried to take me off the medication, I would have another grand mal. So they'd put me back on.
My tests always came out normal. Only one time did I ever have an EEG that showed anything
slightly abnormal. I stopped taking anticonvulsants when I was about 19 and have never gone
back to the neurologist. I used to have a seizure about once a year. A grand mal. I always
have obvious warnings and have time to get myself to a safe place. The last four years or so
I had about 2 years between seizures. Now it has been about a 2 and a half years.
My advice to you is to NOT PANIC. Read up about about seizures. Epilepsy is a catch all
phase that means- you have seizures and we don'[t know why. So everybody's story and situation
is totally different. I think the biggest harm that I have experienced was having people relate
to me as though my seizures were a very bad thing (and in some people's cases I am sure they are)
and should be avoided at all costs. For me however, I would rather be drug free and watch that
I get good sleep, eat regularly, try to stay stress free, exercise, et cetera. But like I said,
everyone's situation is unique. I guess that is the most important thing.If you have more questions
or want more details, please reply. Also, I have not read this book yet, but a friend told me about a book (
(more of a story to read rather than a medical book) called The Spirit Catches You and You Fall
Down about how epilepsy is viewed in another culture as a blessing not a curse.
Don't worry. Help your daughter to feel healthy. Also, children sometimes outgrow seizures.

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