Re: Dystonia from Sinemet/DEFINITIONS FOR PD NEWBIES

[Brenda Ambuehl <ambuehlbr@xxxxxxxx>]

I've been reluctant to chime in after reading about subject lines.  This
relates to dystonia and also to the definitions of dystonia and diskinesia.
I'm a relative newcomer to Sinemet therapy but I believe it's unrealistic to
wait until your body is screaming for it to try it.  I'm hoping there will be
a cure before my body starts reacting to the Sinemet in the form of
dyskinesia.  Already I have distonia--it was particularly bad last weekend,
awoke twice in middle of the night, yelling "ouch, ouch, no no" the first
time, and I won't even bother repeating what I said the second time!
Standing up is the only relief I've tried, but would be interested in knowing
more from others.

Definitions:  taken from a brand new publication from Willamette Columbia
Parkinsonian Society, given to members of the Will Cope Society here in
Portland...but if anyone wants a copy, I'm sure if you write them, they'll be
happy to send one out.  Printing of the publication was generously funded by
a grant from DuPont Pharmaceuticals, so.... why not try?  Write them at
Willamette-Columbia Parkinsonian Society, 1014 NW 22 Avenue, Portland OR
97210.  They also warn folks about reproducing any part of the publication
without prior written permission I notice after typing these two short
paragraphs...aargh!   Although only 15 pages, it's a jewel for referral for
folks not too up on all this, like myself!

DYSKINESIA:  abnormal rapid involuntary movements  of one or more parts of
the body.  This phenomenon is most commonly seen after years of levadopa
(Sinemet) therapy.   (hmm)

DYSTONIA:  Abnormal rapid muscle rigidity causing painful muscle spasms.  It
may affect various parts of the body, most typically the lower extremities
and feet.

Cheers,

Brenda
diagnosed 3/97

Brian Collins wrote:

> 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  <bjc@xxxxxxxxxxxxxxx>