Dystonia Support Group

Hi, I tried to e-mail you a little over a month ago, & you asked that I post this in the "Neuropathy Group," so that you would have more time to research it, et al. Well, there's no "Neuropathy Group" in "Daily Strength" (that I could find), so I'm posting it here, & I hope that is okay.

Date: Saturday, June 21, 2008, 11:03 PM
Hello,
I'm a member of DS (member name: "aposey"), and I have
many questions about dystonia, that I've had for about
2 years now. It's getting worse, and I know that it
is related to dysfunctions of the basal ganglia, but
I'm not sure if that is a "nerve" problem, or
if my questions can be answered here. Right now, I am up,
because my body will not stop moving, so I am unable to
rest. I am on Clonazepam (2mg at bedtime), but
apparently, I've built up a resistance to it, and it no
longer relaxes me to where I can get to sleep. I am very
frustrated about this, and do not know what to do. I
received botox injections on 5/29, and they usually take
about a month to take effect, offering me temporary relief
for my cervical dystonia. The cervical dystonia has lessened somewhat over the past few days (it always becomes
much worse following the injections). I also can barely
keep my eyes open, at all times. My pelvis
"thrusts," my torso twists, my arms
move; it's painful, and I can get no relief. Are
there any treatments for this currently available? I was
on Clozaril for a short while for my tardive dyskinesia,
before my movements became this bad, but I had to
discontinue it, as I could not handle the side-effects
(poor memory, confusion, poor coordination, and
constipation). Presently, I've lost my job due to
this condition, and I really need any and all help you
could/would provide.
Thank you.
Sincerely, A. Posey
Posted on 07/27/08, 03:07 pm