Posted by: eaubeauhorn | January 17, 2011

Dopamine-Responsive Dystonia

A very interesting email from a friend:

Dear Eaubeauhorn,

As you know, I have embouchure dystonia which is known in the medical
world as focal dystonia, a cluster of involuntary motions that focus
around a particular activity, body part or both.  I’ve worked very
hard to overcome the symptoms by developing various Jedi mind tricks.
I’ve been able to play about 95% of the time w/o seriously disruptive
symptoms, but sometimes, I can’t control it, especially if I’m
nervous, hungry, tired, stressed out, in pain, etc.  Under these
circumstances I play with a constant slight vibrato… not so pretty
on a French horn.

For Christmas I was playing in a quartet.  My dystonia decided to act
up so badly at the second rehearsal, I could hardly play anything
right.  I apologized to the group explaining that my dystonia was
acting up.  One of the other horn players said, “I know what dystonia
is.  My wife has dopamine responsive dystonia, DRD.”  He explained
that she’s gotten complete relief from Sinemet, a drug that supplies
the brain chemical known as dopamine.  I’d never heard of DRD, but decided to
research it.

I found a website that described DRD, which usually strikes young
children with a  crippling disability.  But it also described a
recently discovered and milder form of DRD in adults that can present
with only one symptom:  a focal dystonia.  “Wow!” I thought, “could
that be me?”  Could it be possible that I could take a pill and be
able to play like a normal person again?  I didn’t think it would work
for me, but felt compelled to try it.

I got a Sinemet prescription from my family doctor.  After I took the
first dose, I found I could play normally, but was afraid that it was
a placebo effect or just a “good day” phenomenon.  So I continued to
watch & wait and experiment with the dose for the next two weeks.

Well, the undeniable results are in:  I’m getting a good reponse from
Sinemet, which means I probably have DRD.  I’ve been getting relief
from the symptoms by taking only 1/2 of the smallest dose of Sinemet,
so there’s virtually no side effects.  The relief lasts for about 4 or
5 hours before symptoms return.

If this is true DRD, I will probably never need to increase the dose
and there’s a chance that the dystonia symptoms could still go away on
their own.  Because it’s such a borderline, thing, sometimes this
happens.  But if it doesn’t go away, I’m still happy because I can
play my horn normally now without having to use Jedi mind tricks!

Anyway, that’s my big news!  Way cool, huh?

And, BTW, I got my fist 90 generic version of Sinemet tablets for only
$5.00 from Walmart.  Good cheap drugs — too good to be true, huh?

<signed by the friend>

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Responses

  1. Wow! I got excited when I read this. As a professional trumpeter in a large metropolitan area, I’ve fought FTSED over the past 3-4 years. Every few months, I check online for new findings on the subject and I had not come across these blogs before yesterday. When I read that someone discovered a drug (and a cheap one at that) that would help manage the condition, I got in my car and went to the nearest clinic to get a prescription. The doctor showed me Sinemet in the AMA handbook (the doctors’ “Bible”) and how the terminology, “Indications: Parkinson,” meant that it is only legally prescribed in the U.S. to those with that disease. I paid the $45 for the visit and after educating them about the disorder, only to walk away with a “I gotta call ahead next time” thought. What a disappointment. I then thought that maybe their AMA handbook was outdated. Can anyone further illuminate? Was this person prescribed Sinemet in the U.S.? I know it is not a guaranteed fix, unless my disorder is DRD-related, but I feel it’s worth a try. Thoughts?

    • From my friend who has had some success with Sinemet:

      It is legal for any medical doctor in the USA to prescribe Sinemet to any patient for any reason s/he sees fit. If your doctor didn’t want to prescribe for you, you can look for another doctor.

      Consider this:

      There’s no blood test or other non-drug diagnostic test(s) to prove 100% that a patient has PD or DRD. A drug trial is the least expensive and most reliable indicator for diagnosis. So if the doctor can’t prescribe the drug before he knows what the diagnosis is, NO ONE would be taking Sinemet.

      I continue to use Sinemet as I’ve previously described and I continue to get satisfactory results. Sinemet is not a cure for anyone’s focal dystonia, but it can help some.
      ————-
      Hope this helps with the concepts. Sorry about the clinic doctor. BTW, the person who wrote the above is an RN.
      EBH

      • Thank you for this response. I got the same info two days later from a doctor at my church, but he is an ENT and recommended that I go through another doctor.

  2. Dear Anon,
    I don’t know if you’ve read Dave Vining’s web page, but you should. (http://www.davidvining.net/) He has recovered from dystonia; I’ve met him personally, got a private lesson from him, and attended a lecture by him in which he played the socks off of the trombone. He knows how to do it.

    You also might look into the Balanced Embouchure system, and also read the existing posts on the yahoo list embouchuredystonia, which I moderate. There are not really any new posts but there is a wealth of very good information (conceptual, which is all that is available) in some of the existing posts.

    Good luck.
    EHB

  3. I’m so happy I found this posting! I have been suffering for a long time with pain all over and a feeling of stiffness, this year it started to affect my walking, I have other symptoms as well. But I took my first dose and I could walk better! I too am asking myself if it is a placebo affect. I’m really hoping that it is not because I want to feel normal again. I have not found much information on this topic in adults! But here goes with the simenet! Hoping it helps! Thank you for sharing! And my doc said if it helps it will lead to a full diagnosis.

    Please respond with any advice or updates!

    • Just a couple weeks ago a naturopath told me to try 1500mg of L-tyrosine, which is inexpensive and OTC, for my so-called restless legs syndrome, which also can have a dopamine component. It did nothing for the so-called RLS, which in my case has to do with an inability to eliminate toxins, primarily from foods, but….it did have a beneficial effect on the dystonia. Did you know there is actually a placebo gene? (you can find that out through 23andme analysis.) I do not have the placebo gene, so if something works for me, it is actually doing something. I’ve had three rehearsals now since I started the L tyrosine, and the change appears to be continuing. It has not totally relieved the dystonia, but it has definitely improved it so that my chops are noticeably more stable. I was taking tyrosine anyway, but in a much lower dose. Caution: if you are NOT dopamine deficient, tyrosine can cause quite a bit of havoc, so if you want to try it, try 100mg to start. Don’t start with 1500mg because if you don’t actually need it, you’ll be in for at least several hours of discomfort.


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