On Sun 14 Nov, J. R. Bruman wrote:
> I don't think so; but what do I know? I haven't had it myself, and I'm
> not even a medical professional, but I see reports of it from a few list
> members, that make me wonder. As I said before, the Merck Manual doesn't
> mention it, although it does impute certain ANTI-dopamine drugs, and it
> has plenty to say about the various forms of dyskinesia and their cause.
> Likewise, the long paragraphs in the PDR Sinemet description covering
> Warnings, Precautions, and Adverse Reactions (note the descending order
> of importance) contain no mention of dystonia caused by Sinemet, except
> when it is taken together with a tricyclic antidepressant, a class of
> drugs well-known to counter the action of levodopa.
>
> So how explain reports from a minority of listmembers, contradicting the
> overwhelming majority experience and conventional wisdom? I suspect the
> problem is semantic. It's hard to define exclusively the difference
> between dyskinesia and dystonia, and even harder to interpret what each
> different patient thinks he feels. I've mentioned elsewhere the possible
> confusion of very mild peak-dose dyskinesia with resting tremor, and
> since tremor, dyskinesia, and dystonia all involve the contraction of
> muscles, perhaps the latter two can possibly be confused sometimes.
>
> In any case, I've not yet heard of dystonia like that described by Marty
> related positively to levodopa. The question might be resolved if he
> follows his neuro's advice to avoid Sinemet (and other dopaminergic
> drugs), but IMHO, since Marty certainly has PD, that doesn't sound like
> a very good idea. Cheers,
> Joe
> --
> J. R. Bruman   (818) 789-3694
> 3527 Cody Road
> Sherman Oaks, CA 91403-5013

Hello Joe, and others,
Starting about one month ago, I have become a fully-paid-up member of the
distonia sufferers club, so I now can contribute my case. I am afraid that
I cannot offer any revelations of a general nature, but I'm working on it!

About 2 months ago, I started to wake in the middle of one of those
luxurious stretches which your body demands after a good (6 hours) sleep
but this was immediately spoilt by the begining of a painful cramp in my
left calf muscle. I rapidly learned that there was only one way out of
this , and that was to stand up as quickly as possible.
   I managed to stop the cramps by fitting a warmer duvet to and this
worked for a week, but then they returned and so far they have stayed.
   3 weeks ago, a new phenomenon presented itself: As I was waking, it
seemed that ALL the muscles around the ankle area had received a 'GO'
signal, and were pulling away as hard as they could. The result was not
really painful, but my ankle joint seized up solidly, and from the knee
it seemed that I was one solid bone. Again the cure was to stand up as
quickly as possible, and take a careful walk round the bed, and it went
back to normal after a few minutes. I was not conscious of any particular
pain during the rigid ankle period.
  Finally, (and I think the previous events were pre-cursors of it, came
the dystonia. I now wake up with the feeling that my left big toe, and
the small toe are arching up at an incredible angle - no real pain;
more like discomfort, and pretty scary too.
  As far as my case goes, T see no involvement of levodopa. My usage
of it has been stable for years, at 800 mg/day (I also take Permax, and
this I increase steadily by half a tablet every 6 months to counter my
deterioration. Recently I went up from 5 1/2 to 6 x 1mg Permax per day
quite high, but I think that if anything, it is probably the on-coming
point where vitually all the natural dopaminergic cells are dead and I
must rely on the tablets that has started the distonia.
  So far, I can see only one fix for this problem - sleep standing up !!!

A message for Joe Bruman - As you said, this is one of those things in PD
which you have to experience first hand to understand. I can say that now
and I also see that I was well advised to keep out of the subject prior
to these last couple of months. No disrespect intended, that's just how it
is.

I would like to see some hints and tips- anyone!
Regards,
--
Brian Collins  <[log in to unmask]>