All three doctors who answered said they had no information confirming that it was effective for SD, and one compared the recent hype about neurontin to the way drugs like actifed and sudafed were touted as 'cure-alls' in the 1980's.

David Barton (AD/SD, Auckland, NZ)

You are so right and in fact (I'm going to say the *s* word again). It's never more evident how different (unique, let's say) and how individual our responses to dystonia(s) and its treatments are, than when so many of us gather in one place - such as last week in Miami (the *symposium*). There truly isn't one of us alike, which is one reason it's so difficult to get the message out, re all forms of dystonia. If it's difficult for us (and our doctors) to get our arms around it, it's REALLY difficult for the general public.

On that subject, I wore my symposium sweatshirt ("Dystonia" - very colorful and attractive) around town yesterday because I had appointments with my otolaryngologist and speech pathologist and wanted to show it off. But, it occurred to me that the slogan on it (which explains dystonia briefly) has little to do with SD because it emphasizes physical pain, and most of us don't have much of that, compared to ST patients. Unique again. However, several people asked to read the message up close, so it's sort of like a lifesize "tri-fold card."

Also, I've read your accounts of your trip around the US, staying with other dystonia patients, and was highly inspired. I remember you from a couple of years back on the Dystonia BB. I'm so glad that what you are doing is working for you. You're an excellent example for all of us.

Thanks, Lynne

PS: If anyone wants info about the shirts (sweatshirt or tee-shirt), write me off the BB. They're being sold by a support group in New Jersey and are quite attractive. ALL proceeds go to dystonia research. Also, if anyone wants to see what they look like first, that info is probably available online also (such as in our pictures in the URL Dee Linda put out). So many of us bought them and wore them Saturday at the medical sessions that we looked like troops of Bobsey twins. ;-).

I've been on Neurontin. I was prescribed this by my psychiatrist who said it helps with "throat stutters." He was really treating anxiety but I didn't know if SD yet so thought anxiety was the cause. I was on an antidepressant at the time (and have been for a couple years) and Neuronin is use psychiatrically as a "mood stabilizer." It gets the optimum results form an anti-depressant. It is also used for bipolar disorder at times.

Originally it cam ebaout as an anti-seizure medication. I've heard it is also used to help people cope with chronic pain in the face/head/neck. I believe it lessens/decreases nerve activity in some way which might bewhy it helps with SD.

When I was on SD, I did have a higher fatigue level and felt tired a lot. It actually made me feel more socialable, too, whichmight be my own reaction with the anti-depressant. I also put on some weight and was somewhat more lethargic.