In late 2017 I started to feel a strange sensation when I’d try to hold my head still. It felt like it was quivering. 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 physiotherapy. After a few sessions my physiotherapist said he too could feel my head shaking slightly. He told my doctor and by the time I saw her a few weeks later, she was also 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 reduced 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.

For a long time I felt quite despondent as the injections and various medications I tried weren’t the miracle cures I was hoping for. There was a lot of trial and error, unpleasant side effects and sleepless nights. For a while I found driving hard as it was difficult to turn my head to the left, so I only drove short distances. I could feel my world shrinking around me.

Fortunately, my neurologist referred me to a physiotherapist who specialised in neurological conditions. She taught me neck stretches and exercises which helped with pain and improved my range of movement. I recently saw another physiotherapist and together we worked on developing harder exercises and even some weight training. I realised that the healthier and fitter I am, the better I’m able to cope with having a chronic illness.

In 2021 I stopped the injections and at the moment I’m relying on stretching and exercise to manage my symptoms, along with occasional pain medication and muscle relaxers. I realise I’m lucky that at this point I’ve found what works best for me and that now there are more good days than bad days. I’m fortunate to have the unwavering support of my husband, family and close friends. I’ve also developed wonderful new friendships within the dystonia community and found enrichment from my volunteer work with DNA.