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Ginny's Story

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My dystonia began in 1995 whilst teaching in a primary school. I began to notice my head starting to turn to the right and pain in the back of the neck.

After a series of visits to my local doctor, physiotherapist, orthopaedic surgeon combined with massage and x rays I was still none the wiser.  Finally after 6 months I visited a doctor who suggested I had cervical dystonia - news to me but a relief that the condition had a name at least.

I was referred to a neurologist who then directed me to the Royal Melbourne. Hospital to begin a series of Botox injections.  At this stage I had given up my work and was struggling to maintain an ordinary lifestyle.  Having to hold my head up for support and finding many everyday activities a trial (especially shopping, driving, sitting without neck support and having a hair cut) was pretty depressing.

Heat packs and massage gave temporary relief.  Exercises suggested by physiotherapists seemed to aggravate my spasms and swimming gave me a form of exercise without too much side effects.

I noticed that there was a support group set up in Geelong and so attended my first meeting in 1996.  Talking with other sufferers started the journey back to reasonable normality.  I was particularly interested to hear of medications that helped others and little techniques used to overcome the feeling of being different.  Just a touch at the back of the neck was a help to put the head back into a reasonably upright position.

I went back to my doctor and requested a script for Rivotril (anti epileptic drug) and began to see improvement almost immediately.  My doctor knew very little about the condition and noted that he would probably only see one or two sufferers during his career in all probability.

As a fairly experienced sufferer I would suggest that the number of patients attending doctors and physios etc. with the condition may well go undiagnosed.  In fact, the first physio I saw who specialised in neck disorders merely told me there was nothing wrong and that I was…”…just a high achiever who wants to look straight.”

So, with the combination of both the Botox and the Rivotril I began to improve …and my life started to return.

I have now reached a plateau, with the improvement far exceeding my expectations.  That is not to say that I don’t still get neck pain, nor do I face a meeting with any great delight if it requires sitting without a wall nearby for support.  Sleeping is not always easy as I do tend to have spasms in the neck depending which side I sleep on and at times my head tremors if I try too hard to keep it perfectly still- as when having a photo taken!

I continue to have Botox every three months with a neurologist in Richmond and take 1mg of Rivotril a day. (costs about A$26 for 6 months)  As a result I now have my life back again. I have even gone back to casual relief teaching (and as one gets absorbed in the day’s activities the neck becomes less of an issue) and I now enjoy going out for dinner once again and feeling pretty normal.  In fact, people who don’t know I have dystonia are amazed when I tell them about it- so that makes me feel okay

My condition has not improved over the last 5 or so years but remains stable and well managed.  I enjoy walking, travelling, even using a computer, coffees with friends etc.

It was the support group that gave me the move forward that I needed.  The many friends I have made through the group and the opportunity to talk about dystonia with other suffers, has enabled me to see light at the end of the tunnel

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