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I think you'll find many cases of adult-onset seizures. My first grand mal

happened when I was 34 and pregnant with my first child. Eleven years later

I have had 5 seizure episodes. My thinking now is that my seizures are

related to times of bigger than normal hormonal changes.

I have been taking Dilantin/phenytoin, and the side effects have been very

minimal. However a friend of mine tried to take it and could not tolerate

it.

The book _What Your Doctor May Not Tell You About Premenopause_ by Lee,

Hanley, and Hopkins was helpful to me (including the suggested reading list

in the back of the book).

Here in Michigan, a person has to be seizure free for six months before

driving again. I used to hate it even though I knew it was a good idea.

Now I even somewhat (not totally!) enjoy it because it slows my life down.

Am I getting old or what!? :)

Jan

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I am one of those who cannot tolerate Dilantin. When trying to

switch to something other than Depakote (in the hope of having future

children), my old Neurologist tried Tegretol first, which resulted in

horrible hives at the end of a two week trial. Then he tried

Dilantin (which I now know has many similar properties and probably

should have just been skipped). When I broke out in the hives with

the Dilantin, my intructions were to just stop taking it all together

because I was still taking the Depakote. What he forgot to mention

was that the blood work he had in his hands showed that Dilantin had

lowered my blood levels of Depakote to sub-therapeutic and I ended up

having two 10-minute grand mals in one day.........and two ER visits

to two seperate hospitals in one day. I was also very lucky because

had the first seizure happened about 5 minutes earlier than it did, I

would have been driving my car. That is why I mentioned the driving

thing. I do not get auras before my seizures, so I have no way of

knowing they are coming. This is also why I found a " medication

guru " in a big city hospital. Topamax seems to be working wonders

for me so far.

Jeanne

> I think you'll find many cases of adult-onset seizures. My first

grand mal

> happened when I was 34 and pregnant with my first child. Eleven

years later

> I have had 5 seizure episodes. My thinking now is that my seizures

are

> related to times of bigger than normal hormonal changes.

>

> I have been taking Dilantin/phenytoin, and the side effects have

been very

> minimal. However a friend of mine tried to take it and could not

tolerate

> it.

>

> The book _What Your Doctor May Not Tell You About Premenopause_ by

Lee,

> Hanley, and Hopkins was helpful to me (including the suggested

reading list

> in the back of the book).

>

> Here in Michigan, a person has to be seizure free for six months

before

> driving again. I used to hate it even though I knew it was a good

idea.

> Now I even somewhat (not totally!) enjoy it because it slows my

life down.

> Am I getting old or what!? :)

>

> Jan

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  • 2 years later...
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I have a brother that has blephophimosis with mental retation.I have

been trying to reseach the syndrome with little luck.Most of the

informatiom any one in the family had was lost years ago.Also, from

what i understand, little was know about the syndrome at the time of

his birth.I am interested in the genitics and any info any one would

like to share.

Thank you,

Daisy Richhart

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