Hi all,

I've been going through some changes lately in my medications after
basically having the same thing for about 20 years.  I've been taking
zonisamide for the past couple of months, which is something of an
improvement over carbamazepine/lamotrigine, but has its own problems.
It doesn't make me drowsy directly like the carbamazepine, but it's
causing muscle cramps that keep me from getting more than about five
hours of sleep (and may be something serious in themselves).  But I'm
starting to wonder if it's really worth it.

As a scientist, the lack of experimentation in medical treatment - and
the consequent position of ignorance that we are usually in - is often
shocking to me.  For instance, when I was started on the zonisamide I
was told to ramp it up to 400 mg/day, 100 at a time.  No attempt at
trying lower doses to see if they might work (which, apparently, they
do).  One thing that has always bothered me is that I was put on meds
quickly after my first seizure, so I have no idea what the "natural"
frequency is.  Since I invariably had one after missing a dose of
carbamazepine, I assumed it was often but there was always the nagging
suspicion that they might just be reflex seizures due to the drop in
the drug level.  After having a video EEG and going a week without a
seizure (the one time I wanted one!), that suspicion was pretty much
confirmed.

So, when I go in for an appointment next week to discuss how the
zonisamide is going, unless the muscle thing eases off or there's some
way to counter it, I'm thinking about talking to my doctor about just
dropping meds altogether, at least temporarily.  I'm curious to hear
from other people who have decided to stop taking drugs and their
experiences.  Did you stay off?  Start taking them again?  Have bad
experiences?  One thing I want to do is to find out the "natural
frequency" of seizures.  Obviously, if it turns out that I would be
having them every week or so, that wouldn't be tolerable.  But unless I
really want to drive again (something that could actually be possible
with the zonisamide, though I'm not counting on it by any means), if I
have a seizure every three months or so I think that would be
preferable to the kind of impact that the meds have had on my life.  I
suppose there is always the risk of a status attack, and that's
something to discuss with the dr.  But barring that, it seems like
something that's worth trying.

Anyway, thanks for reading this far, and I'd be interested to hear what
people have to say.  One thing that just occurred to me is about taking
"sub-theraputic" levels of drugs; doses that might not be enough to
totally prevent seizures, but blunt some of the effects without causing
side effects.  When I was doing the video EEG, I was taking 100 mg/day
of Tegretol for the whole time, which was probably something like this.
Is anyone taking doses like that?

Karl