I am having great pain from dystonia, and yet I can not find much medical
info on this scourge.

I need some good info, please...

All of us to another. "Dystonia pain" in PD is a result of "which subtypes and what are the particular problems of the nigral population of neurons, your special "case" of PD creates dytstonia, rendering the feeling of a kind of bone not fully "with" the rest of your body. Most PWP who have experienced dystonia know it as a "pain in the neck" which is often a symptom of early PD prior to introduction of sinemet or some other drug. Many go on for a long time, ignoring the fact of the growing incapacitation is the signal that has to be addressed. We still don't know how to control dystonias all that well. For most, initial treatment with sinemet will resolve matters. But as you go on, the sinemet response wanes and the "dystonias" come back.
Dystonia, when and if it raises it's ugly head in your particular "case" of PD, often respond things like massage, swimming, bathing and partaking in as much of anything that gives you "relaxation", and you've got to take it real easy for awhile. Dystonias arise from tension building up in one set of muscles in the "tensor flexor" muscle pairs that are attached to bone, and not being able to relax, and then tense up. The amount and length of time the misdirected signals occur, the more "Dystonic " you may become.
The drug way is first to rank up your sinemet (if you can!). Dystonias can lead to bizzarre "posturing" as you continue your life, without some kind of interdiction. Many PWP have tried muscle relaxant type drugs (there's a whole bunch of them like flexeril, benzodiazepines (test klonopin against valium and a few others to deetermine which suits you best).
That being said, it's time to try to answer what I think the author of this thread had in mind. Ya just gotta keep trying different drugs (Baclofen, Neurontin, etc).
We just gotta take it, blather on, check all options, try something, anything. Everybody's got that "difference" in what they consider their worst manifestation of PD. If you start to get "intolerable dystonia, with moderate to severe pain syndrome" then you've got to go to a neuro, tell them that life sucks big time with the dystonia, and what the hell are you gonna do about it!. That's not all by any means. Dystonias incurr such different feelings among different PWP, that it's difficult to get insight of what's happening to you as compared to other's who can only think in terms of their own experiences.
Wish I could say "try this and it's definitly gonna end your dystonia, i can't, but i'm sure that their are others here who can put in their reply if anything they did or do to prevent dystonia works OK ,no BULL

Tena,

I'm sorry to say that the only thing that helps my dystonia is sinemet and getting back 'on'. It is incapacitating but there are certain postions and stretching I do as soon as I can. Mostly you have to ride it out. I hate it.

One thing i do is lay across the bed and let my head hang loosely face down off the side of the bed so the neck muscles aren't working and blood goes to head. I either let my arms hang down too or put them down at my side with palms up, relieving wrist tension and shoulder tension.

It also helps to have the edge of the bed or a chair or something to let your toes grab onto at the other side of the bed to relieve toe cramping. I do a few yoga stretches and breathe deep when i can.

Dystonia - looking like Frankenstein - same thing for me.
Paula

When I do get dystonia on a scale of 1-10 it's a 10+
effects my neck -lower back and toes, I am very much stressed as this summer, my son who is almost 21,
was assaulted by 3 gang members, who broke into my sisters home,
we have a Criminal case against them, but they are still harassing us
badly.
ryan has been hurt to the amount of 6000 dollars in hospital bills and more!
thank you paula

Old thread might help:

http://64.233.161.104/search?q=cache...&ct=clnk&cd=13

Interesting article about dystonia in this cached thread:

http://64.233.161.104/search?q=cache...&ct=clnk&cd=11

PAGE 2 OF THAT THREAD:

http://64.233.161.104/search?q=cache...s&ct=clnk&cd=9

Mirapex has helped my dystonia.
maam

...on a thread near this one. While dystonia is one aspect that we have barely tested, my own experiment with a left foot determined to convert itself into some sort origami creation was favorable. It reduced it by 90% while I waited for the morning dose to kick in. Try just a loose wrapping. It doesn't need to be tight.

You are great helper!
thank you very much my friend!

Tena,
Like Paula, I found being off and dystonia went together.
I used to find the dystonia much worse the longer I was off and the only cure for it was sinemet (when it finally kicked in.)
You have my sympathy as I clearly remember the pain as almost unbearable, however I no longer get it (if that's any comfort!) since DBS 2 1/2 yrs ago.
Lee
particular