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hi marling

you said:

>I spent 8 hours on my bed, unable to move on my own. Much of
>my body, legs and arms were moving, but not when I wanted them
>to. I was sweating terribly, and the contractions/cramps
>were the worst I have ever experienced in my life. ... I went
>to the neuro today.  He said I have "DID", dystonia & dyskinesia
>from the Sinemet CR. ... 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. Now he wants me to take Permax(Pergolide).
>We will be cutting the Sinemet to once a day and adding the Permax.
> ... What can I expect?  My neuro has talked of keeping the dopamine
>level even in my blood.  He said that the Permax has a longer
>"half-life" than Sinemet?  I do not understand this, and I do not
>know what it means to my body.

what a horrific experience to go through!
have you had any periods of dyskinesia or dystonia like this before?
has there been any kind of build up towards the incident on tuesday?
what happened to your pd symptoms when you cut back on sinemet cr
the two different times?

have you ever taken 'regular sinemet' instead of 'sinemet cr' ?

my personal experience with sinemet cr = 'controlled release'
has been pretty poor - and has resulted in major dyskinesia
[not an unusual effect] as well as stomach/indigestion problems

i have taken only the regular sinemet for nine years
and, while it becomes more and more critical to pay attention
to the clock in maintaining a consistent 'level'
i feel much more comfortable with it than the controlled release version
i'm sure that there are many others who feel the same way

i believe that the cr version is more wasteful as well;
[i.e. more expensive] as much as 30%
doesn't actually make it into the bloodstream

if you haven't tried regular sinemet before
i'd be tempted to try it as a first option in tackling this
rather than jumping into the 'fun' of fine-tuning two meds

all of the dopamine agonists tend to 'smooth out'
the body's reaction to the levodopa in sinemet
reducing the 'hills and valleys' of 'on and off' times

my understanding in re pergolide/permax and bromocriptine/parlodel
is that they are the 'old guard' of the dopamine agonists
and will be shortly [this year?] outshadowed by the 'new' ones
pramipexole/mirapex, tolcapone/tasmar, and ?? a third ??
because these new ones have much fewer side effects
and can be very much more effective in making good use of
any natural dopamine still hanging about in your brain
as well as the synthetic dopamine [aka levodopa aka sinemet]
that you take in tablet form

please keep us up to date on your progress


your cyber-cys

janet

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