my dystonia

[Petersdyst]

Hi, I’ve had a nervous tic sinc about the age of 13. Its never been properly diagnosed nor have I received much treatment. One doctor prescribed rivotril which I became slightly addicted to and took for many years. I quit using it at one point (maybe after ten yrs or so) since it hat never affected my condition, either positively or negatively. I saw no reason to continue using it. Since I have used no medication - basically since the mid 90s). I just accepted my tic as something incurable. It’s probably not the worst one ever, but over the years it has changed my posture and my head leans too far to the right. My only „self-remedy“ is to tr and find exercises and stretches to relieve muscular tension. I did want to try Botox and even had an appointment. But I funked it at the last minute and never went back. It was only when I found this group (by accident on the web), that I realized it had a name.

I‘d like to rejoin the group and read your stories and share experience. Thanks peterdyst

[Gjan3]

Hi. I was diagnosed with cervical Dystonia nearly 20 years ago. At that time, my head tended to turn up to the left side as well as having a tremor. When offered Botox injections, I was happy to try them. They seemed to be very successful in reducing the turning to the left - although I also did exercises every morning and evening - and still do. However after a few years the tremor seemed to increase and become more painful and I decided to stop the Botox, with the agreement of my Dystonia specialist who said that so many muscles were affected that the few muscles helped by the Botox just strengthened those other muscles and made the problem worse.

Sorry I can’t be more positive about the Botox - I have met quite a few people who have been helped by it.

All the best with your efforts to solve your condition!

[Petersdyst in reply to Gjan3]

Thank you for this post. I had a feeling that Botox would not be the longterm solution.

I wonder if there are more dedicated exercises one could do to ease or reduce the tics. I was told once about performing a pseudo tic, opposite to the real one in order to anticipate and therefore prevent the real one happening. Hard to explain or maybe my English has gone too rusty..