Friday, February 27, 2009

Re: [epilepsy] Hi people. I think I may have joined the wrong group.

Dear Jon,

I would say that you are truly in the right group. There are people here who are involved in Epilepsy from many different aspects. Personally, I am in your wife's position. My husband and I had been together for 7 years when all of a sudden at the age of 32, he had a massive seizure. His health has been down hill ever since. (He is on Zonegran and Lamictal). It has been a struggle for him as a man to deal with his new way of life. It has been a struggle for me as his wife to deal with it all. It has been a struggle on us as a couple and with our children as a family to deal with it. We take things a day at a time. It is not easy for any of us, but we make it work. This group offers me excellent support and advice when I dont always understand things or feel alone. I hear points of view from others who suffer as my husband does and I hear points of view from other family members of those with E who experience things like I do. I do not know what I would do without the
emails that I receive from this group.Welcome to our family!

Staci

"gwynny1165@sbcglobal.net" <gwynny1165@sbcglobal.net> wrote: My name is Jon. I started having seizures 3 years ago (have to ask my wife because I forget
information). I'm 43 now and have no childhood record of seizures. My first seizure was a
grand mal in the middle of the night. I ended up throwing myself from the bed onto the floor
between the wall and bed. When the EMTs arrived I was still seizing. I've been on Dilantin
since that day. The grand mal's have mostly subsided and have been replaced by absence
type seizures. This of course happens mostly when I forget to take one 100mg pill on time
(6am, 2pm, 10pm). Every MRI I've had come up clear. No tumors or abnormaliies. This last
seizure I had was on my wifes and I's way home from the movies one night (I asked her to
drive cuz I was feeling "seizurely" and dammit it I really wanted to see "Taken" and remember
it! dammit!) anyway, the doctors took blood and noticed my potassium level was REALLY low.
Has anyone else had this side effect with Dilantin?
The doctors seem to think that the fact that I've been in 2 auto accidents that I ended up
cracking the windshield with my head and one moped accident where I opened the ground
with the same head, are a cause of the seizures. (scar tissue, calcium buildup etc.) but nothin
shows up on the MRI.
Anyway, is this where I belong? Does anyone else suffer from adult onset seizures? I feel so
alone sometimes. My wife is here for me but she doesnt know what I go through. The loss of
appetite after a seizure, the strange taste in my mouth. The loss of all control. I have to stop,
I'll make myself cry again.






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