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.

Does anyone have or know of someone who has cervical dystonia? I have had this since 2012, and I am always looking for anything that helps with the pain and spasming muscles.

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).

Hello everyone,

My wife was diagnosed a few years ago with cervical dystonia and blepharospasm. We previously sought care at Barnes Hospital as well as with a local neurology team, and we’re continuing to learn as much as we can about her condition.

I’m wondering if anyone here with a similar diagnosis has been evaluated or treated at Mayo Clinic in Rochester. If so, we would truly appreciate hearing about your experience.

If anyone would be willing to connect by phone, I would be very grateful for the opportunity to speak with you directly. Thank you all for your support and for being such a valuable community.