My friend told me to pass this to the list to make sure that Dave gets
this.  Since she is not a part of this list but has epilepsy.  I'm just
trying to be a good friend to pass it along.  This may also help other
people as well.


Chester Worwa

---------- Forwarded message ----------
Date: Sat, 8 Apr 2000 15:32:34 -0400 (EDT)
From: Kimberly McGann <[log in to unmask]>
To: [log in to unmask]
Cc: [log in to unmask]
Subject: seizures/treatments

Hi Dave!  My name is Kim.  A friend of mine is on your list and showed me a
message you posted because I have epilepsy and have also had trouble with
seizure treatment.  The one thing that I can tell you right off the bat is
that your doctor should not have raised your medication doseage if your
levels are already too high- that can be deadly, I know this from personal
experience.  A suggestion that I can give you is to try a different drug.
The tegretol XR is very good, but if you stopped using Lamictal and added
Dilantin instead you may have a better chance of being seizure free.

I must say you take an awful lot of tegretol in one day and I don't know how
good that is for you.  Do you make sure that your doctor checks your liver
enzyme count?  If not start doing so because the tegretol can cause severe
liver damage.

And about surgery, doctors will only do that as a last resort because the
brain is a very delicate thing to operate on and they are still not sure of
the overall outcome of what could be lost if they would perform surgery.

I can't say anything about the HBO because I have never even heard of that
kind of treatment.  But the ketogenic diet is supposed to work, but mostly
on younger patients, such as children.

There are also other meds that could help.  I know that playing the med game
is not an easy one but it usually works out to be the best choice.  Taking
medication is a lot better than putting your life on the line with a surgery
which may or may not work.  This is only my opinion and I can't tell you
what to do but you have a family and I don't think that they want to lose
you.  With the kind of surgery you're talking about there are so many risks
such as becoming blind, deaf, losing long term/short term memory, and the
possibility of becoming a vegetable for the rest of your life, and of course
there is always the possibility of death during this kind of surgery.

I know it's hard to live like this but you just have to keep going on
someway or another.  I wish you all the luck.  Please keep me in touch with
what's going on.  Thank you.

Kim

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