Hi Sophie. I don't have a movement disorder, but my 6 year old son does. I sure hope you can find someone who's willing to try some treatments for you. There are lots of different categories of drugs that can help movement disorders. Usually the first one to try is Levodopa (L-Dopa). If that doesn't work, there are other categories of drugs that might help (anticholinergic, benzodiazepine, MAO-B inhibitor, etc.). Are you seeing a neurologist?

If you want to connect to a community of similar people and are on Facebook, you should look up "Dystonia Friend." I can imagine how lonely and isolated you must feel. Movement disorders are so rare that you may never meet another person face to face who's going through what you are going through. Maybe you can at least connect to an active community on the Internet.