Living with Dystonia

Finally, after three years of varying symptoms, I was diagnosed officially with dystonia in August of 2008. I’d had stroke-like symptoms on my right side, migraine headaches, and finally right-handed writer’s cramp, and leg/ foot twisting and cramping on the right side. I also have muscle tightness in my throat and right aide of my face. It was not until I went to a Movement Disorder Clinic with doctors who specialize in this particular condition that I began to receive treatments. Several drugs proved of no benefit–Keppra, Sinemet, Levadopa, Tegretol, neurontin. Because of the large amount of muscle groups involved, Botox injections are not a good choice for me. It would require too much “poison.” We have found that the benzodiazepines work best for me in small doses, in particluar, Klonopin and Valium. Although there is a chance of addiction, my doctors have discovered that many patients with severe dystonia symptoms receive relief with this class of drugs. We have to keep an eye on the benefits v. the side effects. Is there anyone out there who has Hemidystonia? Has anyone explored or had deep brain stimulation surgery for their symptoms? God bless you, Deborah