When I was 23, I was diagnosed with Cervical Dystonia, also known as Spasmodic Torticollis. Per the Dystonia Foundation, Cervical Dystonia is a focal dystonia that affects the neck and sometimes the shoulders. Symptoms include involuntary contracting of the neck muscles, causing abnormal movements and awkward posture of the head and neck. The movements may be sustained, jerky, or a combination. Cervical dystonia may result in considerable pain and discomfort. Treatments may include oral medications, botulinum toxin injections, surgery, and complementary therapies.
I have sustained contractions on the right side of my neck and shoulder, resulting in tension migraines and loss of motion. Botox shots have provided considerable relief, but the symptoms are not always controlled.
Fortunately, there is a ton of information available online. However, I couldn’t find much information about young people suffering from the condition. Honestly, I am not hopeful for a cure, but I do believe that treatments are getting better and will continue to get better.
Before I was diagnosed, I had no idea that Cervical Dystonia, or even Dystonia existed. I want to use my blog to raise awareness about the condition and treatment options.
It felt like a death sentence when I was diagnosed. I knew it could be treated, but I was in so much pain and agony that I couldn’t envision a brighter future. It was hard living from shot cycle to shot cycle. Some sets of shots lasted 10 weeks, some would be useless after 4 weeks, even though I had to wait 12 weeks for more shots.
With the incredible support of friends and family, I now live a much fuller life. I can see good things in the future. It isn’t that having the neck condition doesn’t complicate everything from work schedules to sleeping, but things are getting better.
If you are a young person, or any person, with Cervical Dystonia, I would love to hear from you and share your experiences. It is incredibly lonely because I’ve never met another person with this condition. My doctors have been less than compassionate, even though they mean well. There are several ways to contact me on the right side of the screen. Please reach out!
I have post pertaining to everything from pain relief to living with chronic illness. You can sign up for my monthly Cervical Dystonia newsletter at the top of the page! Just once a month, I’ll send out information relevant to pain relief and Cervical Dystonia.
Additionally, a new GREAT resource that I’ve found is the Cervical Dystonia Support Group on Facebook. There is tons of great information, plus you can ask any question you want. Click here to request to join the group. They usually let you in within a day or so. The closed nature of the group prevents your posts from showing up all over everyone else’s news feeds!