Friday, February 27, 2009

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

Hey Jon,

Most definitely you are in the right group (smile)! Everything posted
relates to most of us! You now are among new friends that really do
relate to everything you said!!! My first seizure was a grand mal
also, it happened just after graduating high school back in 1975.
I've been on so many different medications over the years. My
seizures weren't under control most of my years. I had mostly complex
partials, on average 1-7 each month for most of my year since 1975. I
was on Pheno. and Dilantin from 1975 - 1988. Many different meds.
need blood levels taken a few times a year.

So you don't forget if you took pills or not, why not put your meds in
pill boxes? Maybe a morning pills for the week. Another one for the
afternoons and another for the evenings. Keep them someplace you will
be at and can't miss! Like near you toothbrush or something like
that. Each medication and dosage affects us all differently, most
definitely the side effects affect us all allot!

Jon, you are in the right group, most definitly (smile)! We are all
so open with each other about so many different things in our lives.
We can use your support also. I hope in time you will be making more
posts giving us support as well as sharing with us more about yourself.

Are you working now? How often are you having seizures nowadays? Are
they only only having absence seizures? Take care, keep a smile on
your face!

Steve

--- In epilepsy@yahoogroups.com, "gwynny1165@..." <gwynny1165@...> 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 The grand mal's have mostly subsided and have been
replaced by absence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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