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Marling -

Our hearts go out to you - those hours must have seemed like the longest
hours in your life.  I thought I'd share Dick's experience with you in the
hope that it helps.  When Dick was first started on CR several years ago, he
also had severe dystonia with a bit of dyskinesia.  He was so uncomfortable
and miserable on it that he eventually switched back to regular Sinemet
10/100.  Dick is also highly sensitive to Sinemet, and we believe that the CR
was in effect giving him an "overdose."  He "evened out" the Sinemet flow in
his body by taking half a regular 10/100 every two or three hours, and that
worked well for awhile.

Eventually his need for dopamine increased (a couple of years later, I'd
say), so he tried the CR again, and this time was able to tolerate it.  It
does sound as if you were simply "overdosed" by the amount of medication you
were taking.

>I was suffering severe dystonia.  I went to the neuro today.  He said I have
>"DID", dystonia & dyskinesia from the Sinemet CR.  I seem to be sensitive to
>it.
> At first I was on 50/200 3 times a day, then he cut it in half, 25/100 3
>times
>a day and now only 2 times a day, but I still am having trouble as it begins
>to
>take effect and when it wears off.

In regard to the Permax - I wonder if your doctor would consider Mirapex
instead of Permax.  Dick wasn't helped by the Permax at all, but the Mirapex
has truly been a miracle drug for him.  I know it hasn't worked that way for
everyone, but we theorize that his extreme sensitivity to Sinemet somehow
made this drug the answer for him.  He has cut his usual Sinemet intake down
to two-thirds of his original dose (back up from 1/2 dose when he started on
the Mirapex).

>Now he wants me to take Permax(Pergolide).  We will be cutting the Sinemet
to
>once a day and adding the Permax.

Good luck, and let us know how it goes.  Warmly, Margie Swindler
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