Dystonia Spasmodic Torticollis (DST): a condition whereby the brain sends a message to the neck muscles instructing them to turn right 24hrs a day, 7 days a week, 365 days a year (366 in a Leap year). “Yes!” I thought, when I was finally given a diagnosis back in 2002, “Finally I understand what this annoying, painful, jerking and rotation of my head is!”
My relief was short-lived. Whilst investigating this condition, it seemed to me to be doom and gloom on every website I visited, without a solution or cure. However, I made a decision there and then: I was going to conquer this condition, or at least take total control of how it would feature in my life. Saying this was easier said than done at certain times. Sometimes the pain was unbearable. The pulling to the right would cause my neck, shoulders and back to be pulled out of line. I’d make frequent visits to the Osteopath – followed by 24-48 hours more discomfort – for it all to settle again!
The first medication prescribed to me after diagnosis, was in tablet form. The week that followed was hideous. The tablets made me feel spaced out – as though I were merely an observer of life. Life began to feel as though it was simply happening around me. I stopped taking them very quickly, as a working mother I needed to be focused on what I was doing. I then pursued the route of ‘Botulium’ (Botox) injections, but soon realised that I would have to fight as my local PCT refused my treatment. These injections paralyse the muscles that were pushing/pulling my head to the right, which would alleviate the pressure in my head and on my shoulders and back. In the interim – and due to very kind family members – I paid to see a consultant privately for these injections at a private clinic in Havant, Hampshire. It took quite a few months to get the correct dosage and area, but they worked. These injections weren’t cheap, so I kept fighting for treatment on the NHS, and eventually won my battle in January, 2004. It would be the same consultant, but at Southampton Hospital.
My work during this time was office based and I was finding it increasingly uncomfortable to work at a desk. Determined not to let this condition beat me, I put my mind to identifying an alternative career. I wanted to do something that would allow me to work from home, but something that would also challenge and satisfy me. Hypnotherapy sprang to mind; I had successfully used hypnotherapy to give up smoking, and had also used it to help me with my condition. Hypnosis is a great relaxation tool, and also works well for pain relief and filled me with confidence and a positive attitude toward life with this condition. I found an accredited course, signed up and qualified in 2009.
I can honestly say I have never felt so good about life and myself in general. I believe it’s because of this knowledge that I was able to pursue and undergo the Deep Brain Stimulation operation in 2012, without fear or hesitation. It will be a year 22nd August 2013 since the operation – a year during which, gradually, my head is straightening. Hopefully very soon, it will look and feel totally normal! Also, I’ve gone a year without Botulium injections, which would previously have rendered me crippled with pain. Although I am still having times of discomfort (I don’t like to focus on the word pain), they are becoming less. It’s truly amazing what we can achieve if we set our mind to it!
I will keep you updated with my progress, and feel free to message me if you have any questions or queries in relation to Hypnotherapy. I look forward to hearing from you!