Survey and Discussion: Botulinum toxin injections for cervical dystonia

I started Botox injections in July.  Did not alleviate the pain in my neck.  So discouraged I am at a total loss as to what to do next.  Cervical dystonia has totally changed my life, can't do much of anything I have pain 24/7 without any relief.  Lying down helps if I keep my head perfectly still.

I go to physical therapy twice weekly and it’s been worth every minute/dollar. Here’s the “regimen”.

moist heat for 10 min....Physical Therapist then does about 10 minutes of Myofascia Release on my head and neck , following that, Massage for my neck, shoulders and trapezoid muscles and then some time in the gym to work on my balance.

The massage really does wonders and I walk out without neck pain that lasts for two or three days...and then I go back!  I don’t see terminating any part of PT for a long time, if ever.

No Botox for me.

 14 days later....the only effect is right hand and right arm weakness. No effect on dystonic movements. Dr. notified. Next step?????

 Has anyone else tried regular massages for your neck and shoulders?

@Awatchman‍ what was the doctor's suggestion after learning the botox was unsuccessful on the dystonic movements?

The only suggestion he could give me was an anticholinergic. But this has a side effect of short-term memory loss. That will not work for me in my line of work. Back to the drawing board. Looks like brain and hand training for me, which I will do myself with the help of the Lord.

I am sorry to hear that @Awatchman‍... I would be curious to see about others possible success with natural or alternative treatments such as acupuncture/dry needling.

@Awatchman what about biofeedback? It’s worth exploring. Google neurofeedback as well as biofeedback. 

Have you tried this or know anyone who has tried this? For the focal dystonia

I tried it and it helped. It helped me slow my nervous system down thru my breath, become more aware of stressors quickly and those two things alone help a ton.   When I feel neck spasms/head tremors coming on I can usually control it to the point of stopping the spasms by focusing on my breath for a few minutes.