Movements of Cervical dystonia

Another Day, Another Diagnosis: Cervical Dystonia and MS

Last updated: September 2022

I have dealt with essential tremors for as long as I can remember. They began in my hands, but my hand tremors lessened in college, and I began noticing an exaggerated tremor in my head. It was always there but became worse under severe stress or when I was nervous, angry, or excited. It has stuck around since then, coming and going whenever it pleases.

It's been something I have found incredibly embarrassing and has made me want to hide my head under a paper bag more times than I can count. It's made me feel highly self-conscious and ashamed. It has been an enormous struggle for me and has caused immense anxiety and a lot of tears.

Is this symptom just my MS?

I spoke with my MS Specialist and Primary Care Physician (whom I love and trust) about it on multiple occasions. After trying and failing to fix it with numerous medications, it was chalked up to being an essential head tremor, probably due to my MS. That just didn't feel right to me for whatever reason, so I went down a rabbit hole of information about head tremors. I was on YouTube one day and found a video of a woman whose head tremor was identical to mine. Everything from what triggered hers to how her head-jerk perfectly mirrored mine. Her YouTube channel is about her journey with cervical dystonia.

Finally seeking help for my head tremor

I self-diagnosed myself right then and there (which I do not recommend). The more I researched, I realized I needed to see a doctor specializing in essential tremors and tremors in the head. After months of searching, I needed to see a Movement Disorder Specialist. These doctors are neurologists who focus primarily on Parkinson's disease, dystonia, and tremors. I soon found one in my area and booked an appointment.

I had my first appointment and the specialist was wonderful and thorough. She examined my tremor for a long time. After some neurological tests she had me perform, she was confident in her findings and diagnosed me with cervical dystonia. I felt tremendous relief to have answers and a game plan, but I sobbed in her office and the entire drive home.

What is cervical dystonia?

Dystonia is a movement disorder that causes the muscles to contract involuntarily, which can cause repetitive or twisting movements. It can range from mild to severe. It can affect many body parts, but cervical dystonia, also known as spasmodic torticollis, primarily affects the neck and head. It is a rare neurological disorder that originates in the brain. It causes involuntary muscle contractions in the neck, which cause abnormal movements and postures of the neck and head.1

In my case, my neck and head lean significantly to the right. Therefore I have significant weakness and pain on the left side. I struggle with severe pain in my neck and upper shoulders and clenching of my jaw just from attempting to keep my head steady. Cervical dystonia typically begins in middle age, and the cause is primarily unknown. Like MS, I am sad to say, there is no cure. However, I am thankful to have found a doctor who is working with me on a promising treatment plan.

My cervical dystonia treatment plan

On the day of diagnosis, she prescribed me clonazepam as she was concerned with the immense stress I was under. As much as I hate taking more medication, it has helped me in many ways. While it did reduce the tremor, it is still present, so I recently had my first Botox injections in my neck and the base of my head. I will be going again soon for my second dose. We're hoping that by the third dose, we will have the perfect dosage for my condition, and the neck contractions will no longer be noticeable. If Botox does not help enough, physical therapy will be another option.

The importance of self-advocacy

This is just the beginning of my cervical dystonia journey with MS. Still, I am grateful to know I finally found the help I need. My head tremor was such a constant worry for me, and to have answers has been comforting. Suppose you are like me and feel like something is off and you are not finding the right solutions. In that case, I highly encourage you to advocate for yourself and push for answers until you find them!

It took me about ten years of driving myself crazy, thinking it had to just be MS when it was something more. It had become more than just a symptom. It had become a heavy burden. I was saddened by the diagnosis, but I feel a little less crazy and am hopeful for a better future! I will hold my shaky head high!

I would love to know if you or your loved ones have experience with dystonia, cervical dystonia, and MS. I hope together we can be a source of comfort and support!

XOXO,

Calie

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