In late 2017 I felt my head start to quiver a bit when I’d try to hold it still. It wasn’t noticeable to anyone else but I could definitely feel it. After a couple of weeks I asked my husband if he could see it but he couldn’t. I went to my doctor and she referred me for some physiotherapy. After a few sessions my physiotherapist said he could feel my head shaking slightly. He told my doctor and by then a few more weeks had passed and my doctor was able to see the slight shaking. She referred me to a neurologist who specialised in movement disorders.
I had no pain to start with but by the time I saw the neurologist a couple of months later I did have some pain and the shaking had progressed to a slight head tremor. I was diagnosed with dystonic head tremor and offered botulinum toxin injections which I had a couple of weeks later. They virtually stopped the tremor for about four months and then I returned for more injections. Over the years I’ve had injections in muscles in both the front and back of my neck about every three months. They paralyse the active muscles and reduce the tremor. Unfortunately my condition became a bit more painful and I also started having some spasms in my jaw.
My neurologist also referred me to a physiotherapist who specialised in neurological conditions. This has been the best treatment for me as I learned neck stretches and exercises to do which help my dystonia. I have to do them regularly and they reduce my pain and also give me greater range of movement in my neck. My head wants to turn right all the time so I find driving a bit hard, especially when I have to look to the left to change lanes. So I continue to do my stretches and exercises and go to the gym a couple of times a week and do some gentle cardio and the occasional yoga or stretch class.
I decided in 2021 to stop the injections and focus on stretching and exercise to manage my dystonia. I always have some level of pain but most days it’s tolerable. Unfortunately I do seem to get a lot more headaches since I developed dystonia, and I feel they’re related. Also my sleep is pretty poor as I find it hard to get my head comfortable. I’ve probably tried about ten different pillows over the last four years! My life has slowed down considerably since I got dystonia. I’m lucky that I could retire early from work and now I just do what I can, when I can and if I need a day at home in my pyjamas I don’t feel guilty.