About
About the author
In the summer 2024, at age 40, I first noticed some things that were out of the ordinary.
I remember writing an email and noticing my head tilting right as I typed, ear to shoulder. I’d bring my head back up, but as soon as I started typing again, it started to tilt again. I thought maybe it was a concentration tic. Then I started to notice that when I typed on my phone, instead of holding it straight in front of me, I was holding it to my left side and twisting my body slightly left. (What I didn’t realize at the time: I was doing this because my head was tilting right and turning left, and I was moving the phone to meet my gaze.) Then I noticed just looking in the mirror that my head was a bit tilted to the right. If I held my head relaxed without thinking about it, as I had done for 40 years of my life, it was cocked to the right. I thought maybe it was from laying on my side in bed reading my laptop as I held my head in my right hand. I rearranged my room so I would do this on the left side, but it didn’t fix it. From that point forward, I started intentionally holding my head a bit to the left, which made it look straight. I ignored it and kept living my life: working, going on vacation in Italy, moving across the country.
It wasn’t until October 2024, when I was going through a lot of stress, that I noticed a feeling of tension and tightness in my neck. With the head tilting long in the back of my mind, I thought I should get it checked out. I went to an orthopedic practice that didn’t know what it was and suggested physical therapy. I wasn’t in any pain, but my head was tilting on its own. She did an X-ray, but nothing was wrong. I asked for an MRI and she said she didn’t know what an MRI would even be looking for. She was stumped, and when I asked if they ever see cases like mine, she said no, which is when I knew something was wrong. I did a deep dive googling and it wasn’t until I read the description of “cervical dystonia” and the likely demographics of the people it affects that I knew it matched me.
That was more than a year ago now. I spent roughly a year researching cervical dystonia nonstop, unable to think about anything else much of the time. I’ve probably read hundreds of studies and white papers in medical journals. Tons of anecdotes and experiences in support groups. Everything I could find. I’ve distilled it all into this FAQ I created that answers all the questions I couldn’t easily find answers to without spending countless of hours of research. All that knowledge I’ve gained is what I’ve put together here.
About this FAQ
When I first realized I had cervical dystonia, results from the /r/dystonia subreddit kept popping up on my Google results, and I found some of the most practical advice and anecdotes there. At some point, however, this subreddit that I began to rely on got shut down because the sole moderator of the community had abandoned it. So, I went through the process to take over and, as the new moderator of the community, I wanted to put together a guide of frequently asked questions I kept seeing posted over and over.
Quite frankly, the information on cervical dystonia out in the world is very lacking and impractical. The ignorance I see in cervical dystonia support groups is shocking, and even some people’s doctors aren’t giving their patients good information! Indeed, my experience is that many doctors are poorly trained or operating with very outdated information. I’ve come across so many people suffering because they aren’t being guided properly and they don’t know they can seek better care, so my goal is help everyone navigating cervical dystonia.
Thus, I made this guide for /r/dystonia, but I realized it was hard for non-Reddit users to read it, so I migrated it over here. This is not a “program” I am selling. You will come across many people trying to profit off people with cervical dystonia, which I find absolutely reprehensible. There are no cures being promised here either. Instead, I am sharing cited and research-backed info that I believe can help everyone navigate this disorder. I did all this research for myself so I could understand how to help myself and advocate for my own treatment, and I’m sharing it with whoever wants it. My hope is that the information here is a guide to make better decisions, which leads to better treatments and better quality of life. This information is free for all and I hope you share it far and wide.
I knew from all my research that it would likely take a year before botox helped me. I got my hopes up each time anyway, and was devastated when it didn’t help. I switched doctors twice, and it was on my fourth round with my third doctor (his first round with me) that finally botox worked. I think through all my relentless research, I knew the first two doctors weren’t doing it right, and I finally found one who is. I wish getting treated for cervical dystonia was as simple as going to the doctor and trusting them to treat you, but unfortunately this is a nuanced disorder with treatments that require extraordinary skill, expertise and thoughtfulness. As a patient, you must be informed and be your own advocate. I hope these FAQs enable you to advocate for yourself.
Contact the author
The best way to reach me is to message the moderators at /r/dystonia. Or, even better, you can post at /r/dystonia to reach our community as well as myself because I am a moderator there and see all posts.
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Cervical Dystonia FAQs 