Welcome to Connect, Oakbourne.
Other members have posted about spasmodic torticollis, also known as cervical dystonia, and other forms of dystonia. You may wish to read and join this discussion.

– Anyone else have cervical dystonia? https://connect.mayoclinic.org/discussion/kaia-hi-kaja-this-is-kevin-kelley-just-read-your-post-on/

I’m tagging @cbuss @Kaia, @netfun2011 @kevinkelley @shenaaz @lo @paulm @ycarney @jpoffo @nissa @sweetheartsdance @tmnm @helpinghand @bjmiller, @matttheschmatt @AgentDarien with the hope they will return and share their insights, too.

Oakbourne, how long have you been dealing with the symptoms? Is surgery a possibility for you?

I have Spasmodic Torticollis, oralmandibular problems, can't smile, and I'm a retro left looker. I was diagnosed in 1990, and had the Selective Denervation operation in 2000. I was choking on multiple foods. Dr, Arce performed the operation and I did well until a few years ago. New neuro pathways are involved. Dr. Arce informed me that I'm a complicated case. No more surgery, and NO to Deep Brain Stimulation. I take 4mg of Klonopin in the morning because of pain and stiffness and I walk 9 miles in the afternoon and have nothing to take for the walk. My young doctor does not want to give me a 2 mg Klonopin for my 9 mile walk. She wants me to take Artane, but it makes me shaky. I have never felt normal, even before I was diagnosed. Always shaky, dizzy, and completely out of sorts. I was 37 when diagnosed at the Medical College of GA. I was given way too much Botox, 300 units every 3 months and built up antibodies. I now take Myoblock by this young doctor but it's hit or miss. Dr. Arce wants to do a Genetic Study on my kin folk. Most of my kin have/had essential tremors, oralmandibular shakiness and tightness, and something had to be in their mouth - cigarettes smoking or chewing gum. I was a member of Dystonic Inc., and they were great, but Howard Thiel and his assistant had to shut down the organization. I am lost! I feel comfortable around ST'rs. Where do I go next for support? I enjoy going to ST symposiums. Can you help? Thanks, Dorothy

Anyone else out there experiencing this condition?

I have it too. What treatments have you used so far?

I self diagnosed 9 years ago. I experienced a broken neck at C1/2 in 1983 resulting from a car accident. A spinal fusion was quite successful in bringing me back to a functional state until one day in 2010 I awoke to the stffest neck I had ever known. The head jerking and neck muscle spasticity follwed soon thereafter. Researched my condition, went to doctors and told them that I thought I had this condition. After some diagnostic work on their part, they too confirmed my findings.
I was injected with Botox for nearly 7 years and am have built an immunity to this toxin. It helped only somwhat during each of the 90 day cycles of administration.

Hi hope everyone is well, I haven't found many people on here with cervical dystonia. I was diagnosed with CD about 17 yrs ago and I was told my CD leveled off about 10 yrs ago. Now after all this time I'm experiencing very bad tremors, at times the sides of my face tighten up, I now having hand & finger spasms and I get bad tremor events that resemble seizures but their not ( been tested too many times already). These happen most evenings which are unbearably painful I'm now in constant pain and the tremors never really go away. I'm so confused and frustrated, nothing in my life has changed except maybe I'm a tad older now. Why now the increase in activity and added symptoms. Any insight will be greatly appreciated thanks

@billdemon Welcome to Mayo Clinic Connect. You were diagnosed 17 years ago with cervical dystonia, You are suddenly experiencing a large increase in tremors and unbearable pain from the disorder. You are looking to connect with others that have had similar experiences.

You will see that I have moved your question into a discussion where members have previously discussed cervical dystonia. You will notice members like @oakbourne @tdonoho @oldkarl @sadnancy have experience with this topic and may be a good resource for you.

I also encourage you to scroll back through the comments to find previously shared suggestions. There are two other previous discussions on cervical dystonia you may want to scroll through a read. I have link these discussions below.

- Anyone else have cervical dystonia? https://connect.mayoclinic.org/discussion/kaia-hi-kaja-this-is-kevin-kelley-just-read-your-post-on/

- Anyone dealing with Dystonia? https://connect.mayoclinic.org/discussion/anyone-dealing-with-dystonia/

May I ask what your provider has said the likely cause of your increased symptoms are?

I got Cervical Dystonia, along with Tardive Dyskinisia and Akathisia earlier this year from one of the prescription drugs given to me. They don’t know which one-I was never on an antipsychotic. I was on Cymbalta for chronic pain, clonazepam, doxycycline, Plaquenil and was given Cipro over a period of time. My neurologist had me stop everything (no taper) and has me up to 30 mg Zolpidem (Ambien- yes, 30 mg!) 10 mg 3x day, 600 mg gabapentin, 120 mg Propranolol, added back 2 mg clonazepam, and now 22.5 mg Mirtazapine (Remeron) to try to taper a little off the Zolpidem. I still have the Dystonia, TD, and Akathisia, and don’t know if any of the meds are making it worse. Not sure where to start with taper-what first, how much. Many of these drugs are supposed to be sedating, but for me the combo and dosage has a paradoxical effect, and for 6 months I have slept and average of 1-2 hours a night. The akathisia is terrifying. The neurologist wants to just increase the meds dosage. I feel trapped in a drug hell.

Hello @watercolor8. I am sorry to hear about your frustrations with your medications and the feeling that you are trapped. I am not a medical professional, however, it sounds to me like you are not happy with this approach and the outcome of not being able to sleep due to the Rx cocktail.

My basic question to start is have you shared your concerns and frustration with your doctor and, if so, what did he/she provide for feedback?

Continuing Akathisia is my biggest concern. The doctor wants to raise the dosage of Mirtazapine, which can also cause akathisia. And yes, sleep would be welcomed!