Anyone else have cervical dystonia?

Not to repeat myself, but both Clonazepam and Carbidopa -Levodopa medications do calm the misfiring in the brain or at least calms you. Periodic massages from trained staffers is helpful, but refrain from visiting untrained personnel. I need to try Physical Therapy to build up strength in my neck and back so they don’t feel weak. The tremors put so much strain on the spinal cord by the neck, it sometimes feels as though my neck could break with a sudden reaction/jerk.
Hot showers and heating pads help. Stress is a huge contributor to and trigger for tremors. Learning to deal with stress using a variety of techniques definitely helps (deep breathing activities, soft music, avoiding people and augmentative discussions lol, etc). I find that exercise gets my mind off the tremors as long as they don’t affect the neck. The fresh air from walking is invigorating, swimming mostly breaststroke to avoid turning the head, cardio that is done while standing (no sit-up’s), weight lifting to build strength, and getting proper sleep. Stiffness, pain in the neck/ back of head (locations of basal ganglia & occipital lobe) are always present. I use the many “tricks” for relief.

I’m testing increasing the dose for Carbidopa-Levodopa over a month. If this doesn’t show progress, then we’ll inject deeper muscles as well as the Sternocleidomastoids - due to my head always wanting me to pull to the left. Deep muscles have not been tried.
I’m anxious about Botox, because if this muscle group has a side effect, then I’m stuck with it for 3 months.

Hello everyone,

My wife was diagnosed a few years ago with cervical dystonia and blepharospasm. We previously sought care at Barnes Hospital as well as with a local neurology team, and we’re continuing to learn as much as we can about her condition.

I’m wondering if anyone here with a similar diagnosis has been evaluated or treated at Mayo Clinic in Rochester. If so, we would truly appreciate hearing about your experience.

If anyone would be willing to connect by phone, I would be very grateful for the opportunity to speak with you directly. Thank you all for your support and for being such a valuable community.

Cervical dystonia symptoms? I would appreciate anyone willing to give a more detailed description of your symptoms & their progression. Diagnosed with dystonia recently, but no explanation of what that really means. My symptoms are constant stiff, twisting down my entire right side, top of my head to toes, particularly pulling my neck, plus episodic seizing & loss of strength in hands & feet. Sounds like cervical dystonia, but none of the tremors, spasms or other movement I infer from many of your stories. Trying to figure out what to expect in the future & what to ask from my next neuro appointment. Thanks for your help

@mlledaffodil - this Mayo Clinic information, if you've not read it, may be useful in your quest to understand better:

- Cervical dystonia https://www.mayoclinic.org/diseases-conditions/cervical-dystonia/symptoms-causes/syc-20354123

@dave56pa and all... Dave, did you have pain with your tremors, or tremors only? My son, 57, was an attorney with his own successful practice when Dystonia stopped him cold at age 35. 100% disabled since in a horrible life of constant 24/7 nerve pain, multiple muscle problems, living a life in chronic and acute pain. He wakes every morning screaming for at times 15 minutes in such agony as his body wakes. He sleeps in a recliner with zero gravity at night that helps, has a dilaudid/baclofen pain pump embedded in his back, has the maximum Botox injections every 8 weeks, is on multiple oral meds. Klonapam was stopped abrptly almost killing him, etc. 22 years, possible longer as he was having issues with his muscles prior and worked for several years with heavy workouts, lifting weights, running, heavy exercise to try to get his muscles to relax. Until it was too painful!

The Mayo doctors said DBS would not help relieve the pain, so declined the surgery. He gets nerve ablations regularly and other procedures from his pain clinic.

He's lived a totally isolated life for 22 years, unable to function normally, limited mobility. He is worsening now drastically with increased mobility issues and pain. He needs help but there doesn't seem to be much around!

He gets deep muscle massages that release some of the seizing muscles, but is quite painful.
A.C, we live in Florida, makes him scream in pain... wears heavy jackets in the summer at times! It's tough going into a doctor's building or grocery store with a.c.!

Any suggestions anyone? He is consulting now, very late in the game in my opinion, Rheumatology to get additional help for his overall issues. Hope is eternal!

We've had quite a long, excruciating, debilitating, emotionally and physically exhausting couple of decades with a future of worsening pain and immobility. My health has deteriorated severely as well. At 79, I'm almost bedridden and unable to help him as much. We're in quite a pickle!

Blessings to you... Elizabeth