I'll try to answer this from a non-expert point of view seeing no-one else has jumped in.To the best of my knowledge the only type of dystonia that sinemet is effective with is DRD = dopa-responsive dystonia, sometimes referred to as Segawa's dystonia. With that disorder the effects of treatment with sinemet can be dramatic. DRD is similar to generalised dystonia or idiopathic torsion dystonia in that affects many parts of the body.
On the other hand, SD is a focal dystonia (laryngeal dystonia, actually) and I've never heard of sinemet even being prescribed, let alone being effective, with any of the focal dystonias (blepharospasm, spasmodic torticollis, oromandibular, etc).
David Barton (AD/SD, New Zealand)
I took Sinemet 25/100 for several years to alleviate the symptoms of Restless Leg Syndrome (RLS). Since I also had ADSD at the same time, I must say that it never occurred to me that the Sinemet could be useful for the SD symptoms. In fact, I'm quite sure it did absolutely no good at all. Consequently, I discovered that Sinemet is known to have a "rebound" effect in that it often makes symptoms worse after a prolonged course of treatment, necessitating an increased dosage to achieve therapeutic benefits. From my knowlege and experience with the drug, I think that it probably will do more harm than good in the long run. (I have since switched to "Mirapex" which is very beneficial, by the way, if any of you suffer from RLS.)I have read on this BB that many folks have been helped by Neurontin. This drug is probably much more suited to treatment of SD than Sinemet, although I did not try it myself.
My SD no longer plagues me since I had the SLAD/R surgery in April 2000. I am happy with the results of my surgery, and it feels great to be free of the symptoms.
We all need to be wary of any sort of medication because of all the side effects and untoward reactions that can occur. I must caution you to seriously consider whether or not the Sinemet is good for you.
Best of luck in finding help to control your SD symptoms.
Lloy Keeling, RN (ADSD/CA)
I find that there is a definite improvement in my voice through the use of Sinemet. My voice tends to break more when I don't use it. It doesn't do much for the tremors, though. It does seem to be consistently helping. On days when I forget (or decide not to) take it, my voice breaks much more often. The first week I took it (before beginning Botox) I noticed about an 80% improvement. The second week it dropped to about 50%. With the Botox, it seems to be fairly consistent at topping me off to give me (combined with the botox) about 90-95% of my voice back.Is there any real harm in continuing?
-Karen