Anyone else have cervical dystonia?

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.

Oh my God I am so sorry you have been poly drugged sending prayers your way I have akathisia it's horrible I have not taken any drugs to help it I stopped the offending drug that my akathisia did not go away... there is no cure for this

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?

Hi, I am Mary. I went many, many years without knowing what this was. It was not till I was in my 30s that I was understanding what was wrong with me. I used to do Botox but due to life being crazy, it has not always been consistent. I now do Dysport and I like that more than Botox. I think it works better.

ADD IN: Also finding a Institute for Neurosciences doctor or someone that has that in their name. The institute part. I have found they seem to be better for some reason. Anyone else have this experience?

My daily meds or cocktail I formulated over the years is what keeps symptoms down as well. First, I stay away from benzodiazepines, Xanax, and Klonopin; these somehow make symptoms worse. Why? Because these drugs make cervical dystonia symptoms worse. The brain will say oh I am relaxed, but the body is not really relaxed at all.

Second, No narcotics unless absolutely needed as in surgery or in a hospital environment. The same with the benzos.

My personal medications lists that has helped me

1 a day 60 mg ER Propranolol = Beta blocker
2 a day 200 mg Topimax - movement control can start out lighter dose this is a high dose most would hit the floor - best to start at 50-100mg adjust as needed. I have taken for years. You want to be able to function. I started at 50mg over a decade ago for migraines. Figured out it worked at controlling movements as well at a little higher dose.
3 a day 10 mg Baclofen - movements can be higher dosage for more movements - used to be on 20mg
1-2 Tizanidine Hcl 4 Mg Capsule as needed for sleep or when muscles are extra tight
1 at night Quetiapine Fumarate 50 Mg Tab - Sleep rest is so important for the brain
1 day Venlafaxine Hcl Er 150 Mg Cap antidepressant and anxiety
1-2 Gabapetin 300 mg pain as needed
1 multivitamin with vitamins B and D and iron—iron is needed to keep up the red blood cell count in cervical dystonia patients extra vitamins no matter how good the diet is.
1 stool softener - all these meds absolutely needed!

Let me know what you think if you have been on any of these or what you have tried. I am very curious to know what others feel or are doing. No judgment, this is just what has worked for me. We are all individual cases. I know I am not as severe as others. My doctor even said I was not a candidate for surgery or anything because I was not a severe case. Probably why I went so long in life without getting properly diagnosed, just suffering with symptoms and masking with meds. This is just my cocktail I am not a doctor.

I have had Cervical Dystonia 20 yrs. It soon developed after I had left neck bone spurs removed by Minimally invasive Microneurosurgery in two close together locations, in my left neck. It happens after dark and in first half of my sleeping hrs. I have not found anything that helps except a microwaved cloth rice bag draped over my left neck as I sleep on my Rt side and 15 mgs of Baclophen muscle relaxer 2 hrs before bedtime (constipating).

@watercolor8
Yes, akathisia is terrifying! From my psychiatrist-prescribed meds over decades!
No cure! I got off Zolpidem by starting Costco's "Sleep Aid" otc pills!

@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