I was diagnosed with OT in 1993 in Oxford, England at the age of 50 years old. At that time I was told there were only twelve documented cases. My G.P. had sent me to a neurologist when I complained of a tremor in my legs on standing for the last five years, usually when the adrenalin was flowing it was worse and that when I was in the shower washing my hair with my eyes closed I found it difficult to keep my balance. The neurologist had never heard of the condition but the neurophysiologist had and was very excited that he had discoved this in me with a shake of 15 htz per second. I decided at that time not to take any medication and hoped things would not get any worse. In 1997 I went for a further consultation as the tremor was in fact getting worse. I could no longer stand in the kitchen for long and had to sit for most chores. I saw Dr Bain in London who apparently is the most knowledgably in this country on OT. He told me that OT may get a little worse over time and that it would then reach a plateau and there may be another step up later on, but on the whole he made me feel that things wouldn't become really disabling. He prescribed Clonazapam which I tried for only four days and stopped it as I felt it affected my concentration which was hopeless as I am a competitive bridge player!
This year I have feel that my condition is detiorating. My tremor was very bad on holiday getting on and off boats. I find that seeing or being on another movement effects my tremor dramatically, I am sure that for me there is some visual connection. Now I am having trouble with my right hand shaking. Friends have told me my writing has become like a old persons writing, which I had not realised. Recently I have sudden violent shaking of my hand for no reason and then it stops.
Yesterday I had a consultation with another neurologist in my own county and he said I really should go on to medication. He also told me that he did not think I would get much worse since I had already had it for over ten years. I think time will tell. I am starting medication once my G.P. has received his letter. I mentioned Gabapentin to him as the letters on this website seem to suggest it is helping but he also suggested some of the Parkinson drugs he has found helps some people. He said no trials had been done with placebo's so it was a matter of trial and error. I am interested to see what happens.
I have had a lot of comfort from Gloria and her website which I discovered a couple of years ago and to know that one is not alone with this condition, which I certainly felt back in 1993.
- Cynthia Gloucestershire, England