- Cervical Dystonia / Spasmodic Torticollis
- Interviews
TT's interview
How did all start?
Feeling of twisting in neck muscles.
Second time, in my late 30s, intense pain, twisting, invisible tremor.
Do you already have a diagnosis? How long did it take you to get it?
No help yhe year on my 20s. Self medicated for the last month of that year. It stopped .
13 year remission. Returned. Multiple quackery so-called doctors.
Found info on subspecialist to go to from newspaper article.
Pre internet days.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Movement disorder neurologist
What has been the most useful thing for you so far?
Gabapentin
What have been your biggest difficulties?
Paying for the main Rx, Neurontin until generic versions came along.
Being treated badly when people know I take 2 Rxs.
No terrible physical problems.
Having a CVS pharmacy that shorted me 70 out of 90 pills one month.
How has your social and family environment reacted? Have your social or family relationships changed?
My husband beat me several times, insisting I wasn't sick. We divorced just as I found every symptom in a newspaper article my father read and mailed to me.
My condition has been completely controlled for nearly 25 years. I never remarried....
What things have you stopped doing?
Turning my neck as much.
What do you think about the future?
I just worry about something happening to cut off my medication availability.
So far, which years have been the best years in your life? What have you done during them?
When I was married...Before he went nuts
What would you like to do if you didn’t have your condition?
I do whatever I want. Just spent a LOT of money on the non generic Rx.
If you had to describe your life in a sentence, what would it be?
I'm very fortunate, but still sad
Finally, what advice would you give to a person in a similar situation?
Don't give up. Use a T.E.N.S DEVICE for pain until what works for you happens.
*God bless the late Dixie Carter for her public awareness commercial. She was not even a sufferer of it. But she was the only celebrity to bring some attention to it.
