Jon,
Welcome to our group.
Yes, are at the right place. If you have szs -- most
of us either still do or used to.
I was 30 when I was diagnosed (DX) 46 years ago. I then
had 3 daughters 2, 4, and 6. I too am on Dilantin and
Phenabarb -- have been for over 20 years.
I am assuming you are on brand name Dilantin. Generic
doesn't work seem to work for most. I am pretty well
controlled. My last sz was 2 years ago and before that
it was 4 years. I doubt if just the Dilantin would control
my szs.
You don't mention having an EEG. For some of us there really
isn't any reason -- we just have szs and try our best get
controlled.
If your read the letters -- you will notice that just because
Dilantin and Phenabarb works for me-- doesn't mean it will
for anybody else. Each person has to find the med that works
for them.
You mentioned about driving. Does your Dr. want you to drive?
Every state has state laws about how soon you can drive after
a sz. In what state do you live?
Millie
My name is Jon. I started having seizures 3 years ago (have to ask my
> wife because I forget
> information)
> 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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