Since you asked:

Different things work for different cases (severity, etc.) in different circumstances.

I took Neurontin (900mgs/day) for 8 weeks and was just taken off it by my doctor as my voice/breathing got worse during that time. We couldn't tell what was going on (whether my dystonia was spreading or what) but we knew things were not improving so no point in continuing a med which was designed to help the spasms/straining...while my symptoms got worse.

It helps some people but not me. Good luck in what you decide. Every patient has his/her own story and his/her own reaction.

You might like to take a look at the information given on Neurontin on the following Rx Drug Website http://www.rxlist.com/cgi/generic/gabapent_wcp.htm

This covers things like high incidence of cancer, vision problems, etc. over long term use of this drug - 2 years.

You might also note that Neurontin is used in the treatment of Epilepsy or other related "seizure" disorders. Key word being "seizure". Dystonia (SD is a Focal Dystonia) is a neurological movement disorder causing "muscle spasms".

The reason I ask this is that it's my understanding that those of us with any type of voice disorder develop compensatory 'tricks' to overcome speech production difficulties. Sometimes these compensatory 'tricks' are bad habits that we've gotten into; but then by the same token,through voice/speech therapy, we manage to develop beneficial compensatory 'tricks' to give us a more normal sounding voice. I understand that these compensatory 'tricks' can either be done on a conscious or sub-concious level. Through speech/voice therapy one attempts to achieve 'good' and 'beneficial' voice habits so that their speech production comes easily to them without so much concentration on exactly what they are doing when they produce voice. Is your speech production to this point yet? You didn't indicate that you were still having any problems and doing well with public speaking situations, etc.

From the information I've gleaned at the various SD Symposiums, it seems to be the norm for a patient with a voice disorder to be given an aerodynamic analysis (flow pattern of phonation) evaluation. This is where you talk into a microphone and/or see your voice on a computer screen (much like the graph that appears on an EEG machine when given a Botox injection). This evaluation will show the flow pattern of speech. This evaluation definitely picks up the speech breaks that occur in a patient with spasmodic dysphonia. Those breaks almost always occur on the long sounding vowel words. Did you go through speech/voice therapy to learn any helpful way to alleviate these definite breaks that occur in a patient with SD, or has the Neurontin alleviated those?

It's great that you've regained your NORMAL voice again. That is truly a blessing.

Anne

I just have to point out again that the key word here is "attempts" for many of us, such things are of no use whatsoever, and for some, they actually make things *worse*, so as with any other form of therapy, everyone has to find their own things that work, and what works for one person, may not work, or may even make things worse for another, and that there is nothing that works for everyone.

I am pleased with the results I have. My speech is clear in most cases. Sometimes when I'm in a stressful situation, my voice is not as predictable. I can order at the drive through at MacDonalds now. Also, I can order at restaurants. Those two things were very annoying when no voice came out at all.

I was watching the local news last night in the SF Bay and saw that the NIH is beginning new studies here on things related to Parkinson's (which my family is full of) so I'm going to do more checking. I'd love to be part of a study as I believe my case is classic, regarding genetic connections, pure symptoms and response to treatment.

Also, after being on the Internet recently and checking out Michael J. Fox's site again (following a repeat of him on *The View* last week), I actually wrote a note to several elderly family members, asking for their memories of my ancestors who had any kind of tremors/spasms. Absolutely fascinating (for anyone else who wants to research their family history, which is a really good idea...before all the old folks die)!

All good information to take into account and patterns to note while patients try to figure out what is going on.

Thanks, Lynne (AD/SD)