Hi David,
Thanks for your concern  :-)
I'll get Patsy to give you an update a bit later as I can't remember what's
happened from one day to the next. But basically, what we ended up doing was
reducing my tegretol from 1600mg to 1200mg and reducing the neurontin from
1800mg to 1500mg. That seems to have reduced the bad side effects somewhat,
and I think it's given me a chance to get used to the neurontin, as
initially the dose was put up too fast. (Dum neuro). Seizure control seems a
little better now than it was before going on the neurontin.....before I was
having up to 15 CP's a day, but now only seem to be having 5 to 10 and a lot
milder. They were more severe for a few days, but have calmed down now and
are less severe than before I started on the neurontin. Still don't seem to
think too clearly sometimes. Such as right now for example. I feel like a
dunce trying to be a genius. Probably when Patsy posts here she will tell
you it was all different from what I have said, but she has a memory...I
don't. The memory thing is becoming a pain in the a.s. It's very hard on
Patsy having to remember everything for both of us, and it causes arguments
when sometimes she just doesn't believe that I can't remember something. It
must be very hard on her and she handles things well. It's like she has a
six foot three child to look after. I don't know what I'd do without her
support.

Here's a strange thing.
I found when taking the high doses of tegretol and neurontin that when I
have a cigarette, that was when I would start to feel like the room was
spinning and would get all unsteady - even to the point of falling down.
I've been smoking for years, so it wasn't like I wasn't used to it or
something. Anyone got a plausible explanation for why that would happen??

Oh, by the way - yesterday I only had one seizure and the day before I had
none!! It was great since I spent most of yesterday in a seminar with a
couple of hundred people.

Cheers.
Darryl.
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To email, change daryl to darryl in address.
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03 June 2004.  2:00AM
Latest update:

Note: All alterations to medications mentioned in the following document
have been with the cooperation of the neurologist, who, incidentally,
doesn't know squat.
"Do not try this at home, we are trained professionals".

Things have settled down quite nicely since reducing the Neurontin
(Gabapentin) which the neuro in his infinite wisdom thought I should start
on and increase at record speed up to 1800mg. (Within four weeks!)
I reduced it down to 1500mg, then stayed at that for a few weeks before
putting it back up to 1800mg, which I am currently on. I also reduced my
Tegretol from 1600mg down to 1200mg. Also reduced Clobazam from 80mg to
60mg. Still on 2000mg Epilim.

Reducing the neurontin decreased the side effects I was having - dizziness,
stumbling, collapsing, shaky hands, unsteady eyes, wobbly head, slurred
speach, nausea, thick as a brick......couldn't think straight. Eventually
they all went away and I was able to put the neurontin back up to 1800mg.

When I started I was having up to 15 complex partials every day, with the
occasional cluster of up to 30 small ones within an hour.

*********************************************
Now I have reached a stage where I am having 2 to 5 C.P's a day, with
frequent days where I have none at all. (That in itself is SUCH a blessing
after 30 years of knowing I'm going to have between 5 and 15 seizures every
day).
*********************************************

The severity of the seizures has also decreased, to the point where often
people around me don't even notice I have had a seizure. (They mainly effect
my eyes and a strange sensation similar to an adrenalin rush, but previously
also involved screaming and hysterical laughter and shaking and spinning in
circles).

I think now I just need to stick with this for a few months and see where it
goes. If necessary, after that we can do some fine tuning of the meds to try
to get even better control.

It's strange, but after having seizures every single day for most of my
life, you'd think that on the days I have none it would be quite noticable.
But I get to the end of the day and Patsy asks me how many seizures I've had
and I realise that I've had none. Didn't even miss them.

Happiness is a seizure free day.

Darryl.