I was diagnosed with Cervical Dystonia in 2007 when the condition progressed to head tremors. The initial CD symptoms I experienced were swallowing issues and tenseness in the neck. The doctor dismissed the neck and shoulder pain as tension as I was only in my early 20’s then and doctor thought of it as stress tension. However I did question the diagnosis at the time as I did not feel stressed.
I tried to live with these symptoms and ignore them as much as possible, what can you do if your doctor does not help you. Eventually I started experiencing severe headaches, this is where my will power was tested. I knew then that I was in a dilemma. You see as I have IBS any pain killers will aggravate IBS so this made it very hard for me to relieve the headache, pain and any other symptoms that came with it. Over time I started also experiencing memory issues, I was always a sharp minded person and I found that this changed as well. It affected my sleep and felt so tired during the day. At this stage I knew something was not right but hesitated to see the doctor as I feared that the doctor would think that I am just stressed or it is all in my mind.
As time went by I started thinking about seeing a doctor for my symptoms and just before I decided to, I woke up one morning with head tremors. I had strong tics or tremors, they would stop for about 40 seconds then start again. I started to panic a little as I could not stop these shakes and the first thought was perhaps I had a stroke or possibility that have a brain tumour. Of course when my family saw what was happening what a shock they got! It was definitely evident then that it was not all in my mind, I had something seriously wrong with me. I went to see the doctor and eventually I was diagnosed by a Neurologist. The failed to help me relieve my symptoms. I was told that I cannot be treated with Botox injections or anything else unless my condition was more worse and was told the only option was Valium as treatment. No way! I thought. My gut instincts kicked in though and knew this was wrong advice. How bad did I need to get for help? Wasn’t swallowing issues, pain, headaches and tremors bad enough? Did this doctor want me to be bedridden before I was assisted? Also I thought been prescribed Valium would affect my quality of life and was concerned about the affects of taking this type of medicine, and the risk of dependence.
I decided to contact the Australian Spasmodic Torticollis Association (ASTA Vic). They provided details of a Movement Disorder Neurologist at Alfred Hospital for a second opinion and who can administer Botox injections to relieve my symptoms. I contacted Alfred and was booked in for injections asap. I was told by this Neurologist that I was correct about getting a second opinion as the Neurologist who initially made the diagnosis provided inaccurate information relating to treatment options. I was on Botox treatment for at least 4 years and relieved my tremors dramatically. I am known as one of the rare successful ones where I was able to stop treatment for a period of three years. I am on Botox treatment again now as the Dystonia was giving me grief during the night/sleeping and really bad pain and headaches in the morning which even became unbearable during the day.
As how I managed to live my life with this condition well that is another long story to tell.