Cervical dystonia (Spasmodic Torticollis): Looking for support

@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?

Not sure yet I see my neurologist next week and a new doctor in February (which specializes in movement disorders) where I live it very hard to find dystonia doctors especially ones that take my insurance the other problem is most doctors are usually booking months out. Well I figured in the mean time I could see if anyone else has similar issues, that was the thought anyway.

Hello @billdemon,

I just noticed your post about cervical dystonia. I found some information on the Mayo Clinic's website. Here is a link to that information, https://www.mayoclinic.org/diseases-conditions/cervical-dystonia/symptoms-causes/syc-20354123. I would encourage you to read it and see what similarities you find to your symptoms.

Have any medications been helpful for this condition?

Hello @billdemon

I would like to invite some other members who have posted about this disorder so that they might share with you their experiences. I would like to invite, @helenfrances @wolfbauer and @jlfisher56. I hope that one of them is able to share some helpful information that you can use when you see the neurologist in February.

In addition, here is a link that provides some great guidance for meeting with a new doctor, https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/. I would encourage you to read the information so that when you go to the appointment you can feel educated and somewhat in charge of the time you spend with the new specialist.

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!

Seriously, I can’t navigate thru all of my conditions much less sort thru all the meds anymore either, and I’m only taking half of what I used to. All I know is, it’s never just one thing. Make a list for your next appointment and don’t leave the office until you’re done with the list. You got all of my support and love watercolor8.
Are you an artist too?

I have been noticing head tremors(very slight) for a year. I then got covid in august( I was double vaccinated), and the tremors gradually worsened. The neurologist diagnosed focal cervical dystonia. I tried baclofen for 2 weeks, it seemed to worsen so the md. Stopped it. My mri is clear and they are suggesting Botox injections. I would like to know how real people feel about the level of improvement post injections. I still work part time as a nurse and would like to hear from others that have similar experiences.

I tried the Botox shots for my cervical dystonia and they did seem to help. I'm not able to take any of the pain medications so I can't address those problems. My problem is in finding a neurologist who is interested in helping. Most of them just have an attitude of "there's nothing we can do". Please let me know if you decide to do the Botox and how it works for you. Good luck.