If you’re anything like me, your cervical dystonia pain doesn’t just hurt your dystonic muscles. I get all sorts of headaches, fatigue, and sleepless nights.
Updated on 1/9/2016 after consulting with my Neurologist and Pain Medicine and Rehabilitation doctor.
Disclaimer: I am not a doctor. I am a patient with Cervical Dystonia who share her experiences. What works for me may not work for you, but I am sharing what I have found through trial and error.
Aside from seeing my doctor for preventative migraine medications and regular Botox shots, I like to use the following:
- Lidoderm patches
I had to push and push my doctors to give me these, but I can’t believe that I didn’t get them sooner. Not only do they numb the dystonic muscles, but they’re helpful with the migraines, too.
- Special Compound Cream
This compound from my doctor acts as an anti-inflammatory, local anesthetic, and nerve pain number.
- Trigger point shots
My doctor doesn’t usually put a steroid in the shot, just a local anesthetic. The shots go into the muscle knots that are caused I think are caused by pain from my Botox injections. However, I’m not entirely sure what causes these knots.
Heat is also helpful for my dystonia I prefer to use ice with the headaches, but a nice heating pad at my desk can make a world of difference if the dystonic muscles are pulling.
I have a great recliner at home. When my neck is feeling tired, it keeps me from being bed-ridden. At work, I have a high backed chair. I added a car neck pillow. It really helps when I need to lean back and rest my neck.
If you aren’t ready to invest in a recliner, another friend of mine with dystonia showed me a picture of her Bed Wedge. I never travel without mine, unless I am flying. It’s gone up about $20 since I purchased mine a year ago, at the time of re-writing. However, when I only had my recliner, my husband and I joked about how much we wanted a double recliner so we could sit beside each other and watch TV. This lets us sit next to each other in bed and do that.
- Controlling Anxiety
Sometimes I have to say no to obligations. I really wanted to join Junior League last fall, but I couldn’t spend that many hours on my feet, volunteering in the wearhouse. Even when they offered me a spot on the blog committee instead, I just had to say no. The travel and scheduling was just causing my anxiety to go off the charts. And that’s just one example. I just have to keep my schedule clear because I become more anxious when I cancel on people.
- Accept Help
I like to do everything myself. I also am very goal-driven. So, when something stands between goal and me my anxiety goes crazy. And, I want to do it all by myself. Instead, now I have to let my husband help with the cooking, my parents help me organize all of my stuff, and realize that I can’t run the way that I used to or taking as many group exercise classes that I want. Now, I slow down and accept help. It’s the only way to prevent pain!
- Take a Walk
If you are able, try taking a 10 minute walk. I find that getting my blood flowing helps. My doctor has recommended Australian Dream, to help bring blood to the area, but I haven’t gotten around to trying it yet.
- Massage Table
I know this sounds weird, but stay with me. I have one that slides under my mattress, so I can put my face in it. It allows me to take some stress off of my back. I have this one, but they make a few different ones.
- Kineseo Taping
This one is harder because you need a trained professional to show you the right way for your body to have it applied. I attended the ST Dystonia conference in 2015 and a physical therapist gave a presentation about it. After her presentation, she taped my neck and my husband took a video, so he can now do it for me. Each person has a different taping pattern, depending on where their pain is and how they move.
I’ve tried a few things that haven’t helped me, but other people might find them helpful:
- TENS Unit
- Massage Therapy
- Dry Needling
I edited this post because both my neurologist and pain management doctors separately talked to me about the dangers of using ice for my pain. It gave me a lot of relief, plus I was sick of heat (who isn’t after a few years?) but apparently it does something bad to your muscles. So, talk to your doctor if you have concerns. Apparently there was new research out.
What do you do for your dystonia symptoms? For your migraine symptoms?
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