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DiscussionAnyone else have cervical dystonia?
Spine Health | Last Active: Jan 31 12:42pm | Replies (18)Comment receiving replies
Replies to "I realize this post is from awhile ago. My mom is 82 with cervical dystonia and..."
@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.
Connect

Hello @jenandmom and welcome to Mayo Clinic Connect. I see you wish to help your mother who has cervical dystonia.
Members like @oldkarl and @sadnancy have experience with this topic and may be a good resource for you.
I thought you might find this video on DBS interesting. The video mentions that this can be used to treat Dystonia.
- Deep Brain Stimulation Using Segmented Leads:
https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/videos/deep-brain-stimulation-precision-using-segmented-leads/VID-20457940?
Also, in case it is beneficial, I've also included some basic information about how Mayo Clinic goes about treatment.
- Cervical Dystonia: Diagnosis & Treatment:
https://www.mayoclinic.org/diseases-conditions/cervical-dystonia/diagnosis-treatment/drc-20354128
What has your mom tried for treatment to date?