Anyone else have cervical dystonia?

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 realize this post is from awhile ago. My mom is 82 with cervical dystonia and also has unbearable pain. No doctor or treatment has helped. Looking for ideas for pain management.

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?

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.

@vicky9, @crepass. and all...My son is on 100% disability for 20 years, developed cervical dystonia at age 35. He has lost the important years of his life, suffered immensely, and lives an isolated, painful, lonely life. I help him as I can.

It took me so long and hard searching to find someone qualified to diagnose his problems. He is now, finally, seeing an internationally known leader in the Movement Disorder field of Neurology at Mayo Clinic Florida. It's a gift from above!

This wonderful doctor is caring, understands this and all movement disorders He truly understands my son's issues, he knows exactly where to give the shots, how much Botox to deliver with each, My son tells me this doctor is the best of several who've given him botox shots. He thinks it's miraculous. The help he gets from these treatments is helping him so much. He was on all the opioid meds for many years. With no diagnosis, the docs often thought he was a druggie. He's not. He's in severe pain and couldn't get help for years. I've fought long and hard to get him to this point

He also now, for 2 years, has a morphine pump, with dilaudid. It has taken most of the pain and gotten it under some degree of control, except the shoulder/neck/arm pain that Botox helps.

His third leg of help is medical marijuana. He uses MM daily, vapes, and also the CBD/THC lotion. I use it to help relieve pain in my hands, feets, legs, and back. Arthritis pain, fibro, and sarcoid pain. It is amazing. I also used it on a horrible rash/blistering on my body and it instantly stopped the pain and led to healing. It's amazing stuff.

Find a Movement Disorder specialist, neurology. This is the only doctor who can properly diagnose and treat cervical dystonia. He got the pump from his pain clinic and can now add a boost 4-5 times daily if needed. which probably save his sanity, as he can control the Dilaudid based on the pain using a battery-operated device to click and add med.

It's a combinaltion of treatments developed for the patient's specific needs. I recommend a major clinic or research center, like Mayo Clinic. This doctor treats patients from all over the world. He has conducted years of research and is well known for his findings in movement. He treats me for Parkinson's symptoms, well.

I hope this information has helped and will help you find peace. This is a horrid disorder and very difficult to diagnose and treat effectively. After many years of pain and mistreatment, he is finally finding some relief, from his Mayo doctor.

Blessings and may your find help and peace.
elizabeth