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
What do you do for your dystonia symptoms? For your migraine symptoms?
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