Cervical Dystonia - my story

In February 2014, my neck started twitching a little bit. I felt it just before I went to bed, some nights worse than others. It lasted about 3 weeks. Then on a road trip to visit family in Iowa, it started twitching during the day and ached a little on the trip. I started complaining about it, took some pain meds and found myself resting my head on my hand as much as I could. The day after we returned from our trip, I found I suddenly could not hold my head straight forward at all. I took the day off work, went in to the chiropractor (who was baffled, but still assured me it was just a pulled muscle), then saw a massage therapist (who was also baffled, but agreed with the chiropractor that it must be a pulled muscle), and feeling no better the next day, I returned to work and just held my head in my hands the whole day. It was tiring, to say the least. As the week went on, and turned into the next week and the next, I slowed down more and more and began to cancel things and cut back. Also I was finding that my neck was starting to spasm and jerk and my hands couldn't even hold my head straight (it would spasm right out of my grasp!). I eventually sprained my wrist, scraped up my elbows bracing them on my desk, and pinched a nerve in my back. I saw my general doctor, who was also baffled and prescribed a high dose of valium, to take daily until the 'problem' resolved. This helped with the pinched nerve, but made me feel awful. I started seeing a physical therapist, another massage therapist, and an osteopath who did craniosacral therapy. They were all baffled, and also desperate to try to help. In their desperate 'helping,' they mostly made it worse, with the exception of the craniosacral therapy (this is a very gentle approach to body work), which really helped - it helped with the pinched nerve and provided a little relief so that I could keep working a little bit, although it was only a bare minimum. Also one of the massage therapists, in a brilliant moment of guessing at what might help, showed me how by sitting still and focusing my attention AWAY from the muscles that I was fighting, I could actually control it just a tiny bit - this was the beginning of learning how to live with this although I didn't realize it yet.

I finally had enough with my chiropractor, who after 4 weeks was still singing the same song about it being a pulled muscle. At home we were having our deck stained, and the person we hired to do it took one look at me and asked if he could pray for me - then he got down on his knees right there and prayed. I must have looked pretty bad. I asked him if he knew of a good chiropractor and he gave me a detailed review of all of the ones in town, with his favorite just down the street. I went straight over to her and that's when I finally got a diagnosis.

The new chiropractor told me, as gently as she could, that there was a neurological disorder called cervical dystonia that caused all the symptoms that I had and that I should see a neurologist as soon as possible to check if this was what I had. I was still thinking it all stemmed from a pulled muscle or pinched nerve somewhere, and was devastated to hear there was this other, much more horrible sounding thing that it could be (and when I looked it up, it matched all my symptoms... oh what an awful night of frenzied internet-searching that was). 

I went to the neurologist, who agreed with the chiropractor that it might be a dystonia, but told me not to lose hope - dystonias are treatable with Botox (usually), and besides, we still weren't sure that it wasn't a pinched nerve or pulled muscle. He wanted me to wait another month, get an MRI, and see what happened with my symptoms. He encouraged me to keep taking the valium, even though it was still making me feel awful.

So for a month I hoped that it wasn't a dystonia. On days when I felt better I would cheer and be happy and when my symptoms were worse I despaired. The therapists I was seeing (the osteopath, massage therapists, and physical therapist) who knew nothing about dystonia all assured me that I couldn't possibly have dystonia and kept my hope alive that it was all going to go away. Even after the MRI came back suggesting a dystonia (the conclusion they make when there is no evidence of a pinched nerve or any other clear problem that might cause my symptoms). But MRIs are limited and I continued to hope it was all going to go away, even as I went back to the neurologist and he diagnosed me with cervical dystonia and started the process to get the Botox approved. And to add to my own denial, I kept having stretches that were better than others, and after a few months (it took almost 3-4 months from my first neurology appointment to the actual appointment for my first injections), in little bits, I was starting to feel like I was getting better - or at least, I was learning how to better tolerate the condition. I could hold my head straight on my own sometimes, the spasms weren't wrenching my body so painfully, and I was able to decrease the valium a bit (not a small task, if you know much about benzo withdrawal). So for that first month after my diagnosis I tried hard to believe I wouldn't need Botox after all because somehow I was going to get better on my own.

But between the good days were bad days, and some days were really bad days. Sometimes I had to spend the whole day or even weeks on the floor of my living room because the combination of the neck spasms themselves and the trauma they were causing to my body was just too much for me to even get up. And I couldn't predict when I would feel ok and when I would be so contorted by the pain and neck spasms that I could hardly drive or walk, so I couldn't commit to doing anything that involved leaving my house. Although staying home drove me crazy, and eventually I ventured out anyway. I figured out that I could survive for short trips to a few places like the park or the pool as long as I could find a way to lie down a lot and get over my own self-consciousness over my crazy-looking head (although I found that if I didn't interact with anyone, most people wouldn't notice). But it was still miserable - I could go out, but it exhausted me and I couldn't do much, and the rest of the time I was on the floor, trying not to think about how much my neck hurt. As the date of my Botox injections drew nearer I switched my attitude from one of hope that I wouldn't need Botox to one of hope that Botox would give me some kind of relief from the misery I was in. This change in attitude marked the end of my denial.

So I took action. Just before getting my first Botox injections, I finally made contact with some people who had cervical dystonia. The first person I met with cervical dystonia, MT, drove right over after we found each other, gave me a hug, sat with me at my kitchen table, and told me not to be afraid of Botox or of cervical dystonia. She had been treated successfully with Botox for 17 years and talked me through what it would be like and how much it would probably help me. She showed me how her neck had been and how much better she was now, definitely not stuck on her living room floor most of the time. Most importantly, she had a matter-of-fact attitude about it that really changed my perspective. Up until then, this had been a weird thing I had never heard of and for all I knew I caused it to myself. It seemed scary and foreign. MT helped me realize that it's nothing more than a medical condition and as far as medical conditions go it's not too bad of one because it's treatable. Traumatic, possibly difficult to manage and in some cases debilitating, but treatable. And in MT's case, at least, she had managed to treat it quite well.

In the middle of all this I met another amazing woman, Ms. Z, who had had generalized dystonia. Ms. Z told me her story about how she had spasms all over her body, night and day, and hardly functioned. Botox is not helpful for generalized dystonia as there are too many muscles involved. Like many of us who have dystonia, Ms. Z was overcome by fear and panic as her symptoms took away her life and career and made her feel miserable. So with great compassion for the situation I was currently dealing with, she encouraged me to learn to accept my life as it is, so that I could live as much as possible without fear. This would help me feel better (because you always feel better when you are happy and relaxed vs. fearful and tense) and would also be critical for me to think clearly to find the right treatment and path toward recovery (because calm leads to clarity whereas blind panic leads nowhere). She reminded me that even though I felt like I was about to lose my job and my life (as she had felt) - this wasn't the case at all. She pointed out all the things I could still do (for example, talk, see, feed myself, think clearly, etc - coming from someone with generalized dystonia this was a profound realization). I could do all those things, and I was still working a little bit, as much as I could, and had gotten nothing but support from my colleagues and boss. I didn't know if I would get better, but I didn't know that I wouldn't get better either. Or (and this came directly from Ms. Z, who was full of hope) - I also didn't know where my job could go if I didn't get better but still didn't quit - sometimes there's a path that you never knew existed. By the way, after 5 years of generalized dystonia Ms. Z's symptoms dramatically improved and she is one of the lucky ones that has gone into remission.

So, as I was slowly coming to accept that I have cervical dystonia and my life-path may never be the same as I had originally planned it, I went in for my first Botox injections. And they helped, about 70%. I could keep my head straight. I could almost have a conversation with someone without them noticing there was something off about my neck. I had enough energy to work all day (most days), interact with my family, even go out to eat - sometimes all in the same day! It wasn't perfect though - my neck still bothered me, and I had to work really hard to not think about it. People did notice it, as it was still stiff and sometimes obviously bothering me. Certain things were still impossible, like driving long distances and sitting through more than an hour of meetings. But I was very, very grateful to be about 70% back to my normal life.

After my first Botox treatment - doing much better but my right should drooped a little and I still struggled a little to keep my head straight

And then i realized that what MT and Ms. Z had told me was true - this was treatable, and staying calm about it would lead to the best possible outcome. I had already discovered and had great success with Botox - but what else could I do? I sought out several different physical therapy programs designed for people with cervical dystonia and through these I started working harder on strengthening my back, improving my posture, and doing the things that generally make you feel better - and this helped. Then on the advice of other people I had met with cervical dystonia I switched doctors, to a movement disorder specialist who specifically treats people with dystonia and is very experienced with giving Botox into the neck muscles. The new doctor not only improved the effectiveness of my Botox treatments, but he also talked me into trying klonopin, a muscle relaxant related to valium that actually helped my symptoms without the awful effects I had with valium. With klonopin I actually had a back-up plan for those times when the Botox didn't quite cut it - and this was also a huge, huge step forward since Botox doesn't always last the whole duration between treatments (treatments must be spaced at least 12 weeks apart to reduce the chance of becoming immune to it and having it no longer be effective).

After my second Botox treatment with a Movement Disorder Specialist, feeling (and looking) even better!

I am happy to say I am now back at work and, although still cautious, I am not too far off track from where I want to be (although I have changed my expectations somewhat, and am much more accepting of wherever I end up). I am also feeling stronger and healthier, and importantly learning how not to let my neck bother me as much, both when it 'feels funny' and also when it might look funny to other people. I'm finding that if I don't pay attention to it other people don't either. 

And through all this there were some positives. My relationship with my family has grown much, much stronger. My mom, who was my constant support through all of this, has truly become my best friend. I am in awe of the amount of energy she was able to put out when I needed it and am so grateful for all the fun we had together when I started to feel better - and even when I didn't. She helped me learn how to live and be happy no matter how much emotional or physical pain I'm in. My husband was my hero through this and proved he can move mountains to keep the ship from going down, and he still give me a neck massage at the end of the day. And my daughter, who was always a momma's girl, showed her support by giving me the space I needed when I needed it the most, which took a lot of growing up and I'm so proud of her for this.

I am also forever changed in my perspective of other people who have to face challenges. I have an aunt who is blind who I have always looked up to for her amazingly functional can-do attitude, and I thought of her often on this journey. This experience has made me more aware and compassionate toward all the people, like her, who have had to figure out a way around something that most people take for granted or never think about. In a very short period of time I went from healthy and normal to disabled and now I will never forget to enjoy every minute to the most that I can.