I was diagnosed with Cervical Dystonia in 2007 when the condition developed into head tremors after initially experiencing a stiff sore neck over a period of time.
Tremors, No Way!
The doctor dismissed the neck and shoulder pain as tension. I was only in my early 20’s then and doctor thought of it as stress tension. However I did question the opinion at the time as I did not feel stressed.
I tried to live with these symptoms and ignore them as much as possible, as was not much can do if the doctor was not aware of another cause. Eventually I started experiencing severe headaches, this is where my will power was tested. I knew then that I was in a dilemma. I also lived with IBS and 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 was all in my mind.
As time went by I started thinking about seeing a doctor for my symptoms and just before I resolved seeing one, I woke up one morning with head tremors. They were strong and would stop for about 40 seconds then start again. At the stage I was alarmed as I could not stop these shakes and the first thought was perhaps I had a stroke or the possibility of a brain tumour. My family watched on in shock! It was definitely evident then that it was not all in my mind, I had something seriously wrong with me.
I went to see a doctor and referred onto a Neurologist and diagnosed with Cervical Dystonia (CD). I was told that I cannot be treated with Botox injections or anything else unless my condition was much worse and the treatment option was Valium. No way! I thought. My gut instincts kicked in and knew this did not seem like adequate medical advice. How bad did I need to get for help? Wasn’t 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, I was concerned about the affects of taking this type of medicine and the risk of dependence.
I decided to contact a Spasmodic Torticollis Association for information and they provided details of a Movement Disorder Neurologist who was seeing patients at a Hospital clinic for a second opinion and who could also administer Botox injections to relieve the symptoms. I was booked in for injections asap. I was told by this Neurologist (Movement Disorders Specialist) 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 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!
Australian Dystonia Support Group 