Is there anyone else who has been diagnosed with Dystonia? What are your symptoms? I have Cranial/Cervical Dystonia. I was wondering if any sufferers are receiving treatment that is working for them.
Thanks
Lee
PS I don't know how this question ended up in the Breast Cancer section. Sorry! I will explore and try to delete it. Hope you are all having a great day!
I have never heard of this. Is it associated with breast cancer? What is your story?
hi
we have a few members with Dystonia in the Rare Movement Disorders group who have posted within the group.
http://rarediseases.bensfriends.org/group/raremovementdisorders
I didn't relaise there was a forum for the whole site too.
Kati
I have taken Diazepam, Dilantin, Depakote, Klonipin, Lorazepam, and Keppera. They all worked for me but I became very drowsy with each one for a while. But they are worth a try if you re desperate. Mention them to your doctor.
Jeanne
Lee,
I have cervical torticollis and spasmodic dysphonia. (Funny how the dystonias always seem to run in pairs.) They tried several drugs in the beginning, alcatane (sp?), baclofen, clonzapam, but none of them worked very well.
I get botox injections regularly now both in the neck and larynx. I take Inderal daily for the head tremor, but the Depakene I take for PME is making that worse. I've found medication is just a bunch of trade offs based on what you are willing to put up with and how much relief you get.
I hope you find relief.
m
Thanks Jeanne and Molly!
I have just had another Botox treatment. This time he did the usual around the eyes, cheek, forehead, neck and shoulders, but also added the Migraine set into and around the scalp. It is early days and the neck and shoulders are still giving me grief, but the pressure on the forehead and continual headache in that area has eased a little. I will be starting with Clonazepam in 2 weeks - I have already trialled Tegretol, Lyrica, Inderal, Endep, Artane, Neurontin, Cymbalts - with no major benefits (just a few negative side-effects). I know it is all about trial and error but I feel that we are working towards the best possible treatment! :) I also feel that the condition is still progressing, so we will have to continue adjusting the treatment.
Thank you again for your input and support!
Lee
Hi Lee, and welcome to the group:0) I have tried botox only once, but my neck muscles spas so bad, that I had to have alot of shots in it. The trouble I had with it was it was very painful to get 15 shots at once, and also, I had so many, I couldn't hold my head up. I did not have anymore. I too have spasmatic torticollis. I take a muscle relaxer called Zanaflex. It does help calm my spasing down, but have to take 4 a day! I'll keep checking back on progress of the group, and hang in there.
Janet
Lee Pagan said:
Thanks Jeanne and Molly!
I have just had another Botox treatment. This time he did the usual around the eyes, cheek, forehead, neck and shoulders, but also added the Migraine set into and around the scalp. It is early days and the neck and shoulders are still giving me grief, but the pressure on the forehead and continual headache in that area has eased a little. I will be starting with Clonazepam in 2 weeks - I have already trialled Tegretol, Lyrica, Inderal, Endep, Artane, Neurontin, Cymbalts - with no major benefits (just a few negative side-effects). I know it is all about trial and error but I feel that we are working towards the best possible treatment! :) I also feel that the condition is still progressing, so we will have to continue adjusting the treatment.
Thank you again for your input and support!
Lee
Thanks, Janet!
I know what you mean about getting so many shots at once - I felt as if I had been attacked by an vicious porcupine! Fortunately, I have a fairly high threshold of pain (which usually means that I don't like to show the pain and tell myself to be tough), so I will continue with the botox shots. and hope for some relief.
How do you function on the meds? Do you work or do you have to rest because of the side-effects? I have had to give up teaching because of Dystonia, but I want to feel 'alive' even if I am stuck at home!
I will let you know how the meds go! Please keep me updated with your progress, too.
Lee