Anyone else have cervical dystonia?

Me!!!
Have you found anything to help. I live my life in pain 24/7

I forget the technical terms but my spinal surgeon zapped my nerve ending in that part of my neck/upper shoulders/ upper back and the relief is dramatic‼️ In 4 years I have had it done twice and will need it done again soon - within the next 6 months. It’s outpatient surgery.
I tried Botox but it made my head drop worse. Baclofen didn’t seem to help and it made me feel sleepy all day. I eventually have had to go to round the clock pain meds but I also have Spinal DRegeneration and Fibromyalgia too.

I have cervical dystonia/spasmodic torticullis, and am in pain but I have a high pain tolerance and just got used to it over the years. I get Botox every three months which sometimes gels and sometimes not. My first treatment was physical therapy with a specialist in this. I worked hard and it did help with the range of motion and the severity of spasms. Then the Botox while still doing PT, but still kind of the same results. I have done acupuncture as well (didn’t do much for this issue but helped with neuropathy). I then requested a chiropractor so could not initially do much in the way of adjustments because my neck, shoulder, and upper back muscles were solid as a rock. He used a TEMS machine and some massage with a power tool (that’s what it felt like at least), and it helped (with the pain) a little more each visit. Then I paid out of pocket for a sports massage. The therapist worked directly with my chiropractor. The first visit was all about him feeling where the issues are, but it was still like a massage. That did wonders for my pain for a few days. I don’t know if it was the path of treatment I took, but that massage was great because I didn’t realize how bad the chronic pain was until I got a bit of relief. However it didn’t stop my torticullis, sadly. Long reply, but maybe someone can relate or got a good suggestion from this?

@jenandmom I was diagnosed with/CD in 2021 - eerily occurring shortly after receiving the rushed Pfizer Covid vaccination. I tried Botox injections that utilized several different muscle combinations. My body was very sensitive when certain muscles were injected: Scalene caused the left side of my throat to swell/close up; Sternomastoids and Levators (spelling?) caused head-drop (difficult to raise head). I had to take a break from Botox injections July 2024. I was placed on Clonazepam. This medicine did help calm the brain and help me to sleep at night; however, the tremors and neck pain still exist. I cannot lie on the back of my head because this action (as well as the slightest bit of stress) is a trigger for the tremors. My neck, head, shoulders, and back (down the elevator muscles) always feel the strain of tremors. I was just give Carrol’s-Levodopa 25-100 tablets which I take half of, 3x a day. This is mainly used with Parkinson cases. It does calm the brain, but tremors return full force when it wears off (hence the reason for taking 3x/day). I take both C-L and Clonazepam to test efficacy. I have an appointment on January 28, 2026 to discuss both drugs and determine if I should try Botox again. My neurologist is fantastic and very caring. Has referred me to someone in Boston to obtain a second opinion. I’m an anomaly w/regards to my body’s sensitivity to Botox injections. This illness has absolutely changed my life. I had just retired from the workforce and was looking forward to enjoying life further. I keep plugging away, but it definitely upended my plans. I will not entertain Deep Brain Stimulation- it’s my opinion that the medical community has a ways to go in this area. There is another option using ultrasound and laser treatments - it was recently successful for a man who had severe hand tremors. Unfortunately, there is not enough research/clinical trials for cervical dystonia. I’ve read a tremendous amount of research on the Basal Ganglia and the Nervous System. I’ll reply again if I have better results.

@pmhpesp5
Sorry for the autocorrect feature. My new medicine was Carbidopa-Levodopa 25-100 tablets.

Hit it’s Dave from Pa: I struggled with progressive dystonia tremors for years. The neurological team tried Botox and various medications and eventually we agreed to proceed with deep brain stimulation. The results have been amazing as my tremors have all but disappeared. I’m still on maintenance doses of topiramate & clonazepam which I am weaning off of. Other than the 3 month follow ups with the neurologist for adjustments I would consider the DBS successful

@moldybrain

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.