Kim,

Thanks for your responses.  You make some very interesting points.

>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.

This is the same concern I had when he did this and in fact I have lowered
my medicine dose back down to where it was before to minimize the noticable
side effects(dizziness, etc.).  This has helped minimize those, but the
seizures of course are still as active as always.

The interesting part is when he did the blood test my levels were within
therapeutic levels.  My bet based on that is that the raise in my dose
probably put them too high.

>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'm not sure about that.  I have been tried on Dilantin(or I believe an
equivalent) along with the Tegretol and by itself.  It did no good and in
fact made me more drowsy.  Based on that I told the doctor I considered it
"counter productive".:-(  That was a different doctor as we were living in
Utah at the time.

>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.

I know this is quite a bit.  Infact I thought I had read somewhere that this
dosage was considered by those "in the know"LOL to be a dangerous dose.  I
had also been told that 5 pills a day was the maximum safe dose of Lamictal,
yet I'm on 6?! As I mentioned a little higher the doctor did a blood test
last time I was in there and checked medication levels and CBC which I
assume includes blood enzyme count(?).  He said both were within therapeutic
ranges, yet raised my dose anyway.  This seems to make no sense to me.

>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 was evaluated for brain surgery once before.  I was and am very reluctant
to consider that.   What I have asked the doctor to consider if he would be
willing is the VNS("pacemaker") treatment.  I have heard its results are
very good.  I have noticed dizziness before seizures lately and based on
what I've heard might even be able to stop seizures before they start.  He
says he does this several times each year, but wants to try more treatments
first.  I really want to start work and be able to function better now and
am impatient.

>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.

I have researched the HBO treatment on my own.  Turns out that this
treatment is used more to loosen tight muscles and, in fact, has been known
to increase seizure activity for those with epilepsy.

The ketogenic diet I have read great things about, but like you have heard
of its use mostly with children.  Like I told the doctor and my wife ev,
even if I wanted to try this how do I do it and still maintain a decnt diet
for my wife and six children.

As you say this is hard to live with, but I have always been able to.
Luckily I also have people around me who understand seizures and don't get
alarmed.  Even my youngest children have learned what they are and don't
become alarmed when they see them.

Will keep you very posted on what goes on with this.  I have an appointment
with the neuro on Tuesday morning.  I will post whatever information and
decision is made about treatment here Tuesday afternoon.

Thanks again,
Dave