Connect
← Return to Anyone dealing with Dystonia?
Discussion
Comment receiving replies
Hello. I have the type of dystonia called cervical dystonia, which involves the neck but in many of us also affects the jaw and facial and head muscles. I tried beta-blockers and muscle relaxers and while they gave me some relief, the side effects were so bad in me that I had to come off them. I really don't want to do the botox. I'm looking into LDN, because I've heard it can help some with dystonia a lot and I also have fibromyalgia and it has great results with that too. Problem is, LDN is off-label usage and it is hard to find a prescribing doctor. I'm still in the process. I do tai chi in that helps a lot with balance and mindfulness and relaxation. Lifestyle Changes focusing on low stress and meditation and muscle relaxation are kind of the only things that help so far for me.
Replies to "Hello. I have the type of dystonia called cervical dystonia, which involves the neck but in..."
I appreciate your adding to this discussion about the use of Tai Chi, etc. for your stiffness. I have stiffness related to a neurological problem and Tai Chi and other gentle exercise programs are most helpful to me in maintaining range of motion as well as balance.
Teresa
Hi indren77, I was wondering, what is LDN? I've dealt with this monster all my life. I've had Selective Denervation performed by Dr. Arce, the best! It has saved my life, literally. It's given me almost 20 years of relief. Plus Klonopin is my answer. I can't live without it, but when you get these young neurologists who think they know everything, creates a BIG PROBLEM! They think they know it all. I've lived with this monster all my life, have a support group, attend symposiums, I'm a RN and the young neurologists don't care to hear what I have to say. Don't they realize they learn from their patients? I THINK NOT! I've even given them Dystonia, Inc and DMRF magazines and they treat them like trash. What is medical school teaching these young doctors who know nothing! They don't want to give you Klonopin for treatment. I get way lower the therapeutic dosage. I fired her and she was so childish that she wrote and fired me. I fired her first!!!!! Many young neurologists don't feel comfortable in their own skin and act CHILDISH! Medicine is failing us!
Connect
Hello @indreni77, Welcome to Mayo Clinic Connect. Thank you for posting! I'm sorry to hear you are in pain.
I'm glad to see you are doing some martial art and practicing mindfulness and relaxation. From experience, I know it really helps and is so good for our mind.
I'm interested to follow you and see if you do find a prescribing MD for LDN and how it effects you and if it helps. Please keep us updated!
What side effects did you have with the beta-blockers and muscle relaxers?