Living with Dystonia

February 2009

• Dystonia Attacks - by Ctherese - (Wed, Feb 25 2009)
  Here is my problem which is Dystonia myself and my Daughter. It started about 10 years ago I believe stress enhanced by symptoms. My husband was diagnosed with Type 2 Diabetes. We believe he was in contact with Agent Orange He’s a Vietnam Vet. He lost his leg about 3 years ago. He 2 years ago lost his small toe on his Left Foot. He has a difficult time moving and his balance is poor even with Therapy. We are both in treatment for Depression too! I have a 13 year Daughter living at home. The Dr. Told my Daughter this can not be inhered but, in my research I have found that prove otherwise. You have to be your own advocate and research everything Dr.’s are not God or the last word. Go to another Doctor if possible, or get a referral to a specialist in my case a neurologist. Plus, if one neurologist does not help and went to another one who finally helped me. I know Stress Increases the changes of attacks. I have keep myself under control for my Daughter and Husbands care. Go to web site and read books be your own best friend and love yourself. This is a lesson I have learned the hard way. Take care of yourself so, you can care for other. I am considering going back to school at age 55. I feel that my age is making it more difficult to find a good job. My Dystonia attacks can happen any time. it usually happens some time after a high stress level in my life. I am surprised it’s not worse. I believe the stress is affecting my daughter too!! We have started Yoga together and try to be kind to each other. Her Dystonia is small her month tongue and eyes spasm not that can’t be controlled. She went to the ER and they also said it had to be drugs. They did a drug screen for that cause Dystonia but, not where present. I told them, I get Dystonia but, the Nurses and Doctors said you do not inherit this. My father had uncontrolled seizures and small spasms at times. My own Dystonia is overwhelming. It involves my Neck to one side, My teeth get tight and I can’t even talk at times. My eyes are very sensitive to light. I have to stop what I am doing till it’s gone. After words I am left overwhelming wore out and going to sleep for some time helps. At first Benadryl did help me feel better. However, I believe I developed a strong tolerance to it and it became not effective. I finally am on Anti-anxiety and an anti-depressants that are helping a lot. Never stop looking for your answers. [more..]