Primary Orthostatic Tremor
A Primary Orthostatic Tremor story
I was diagnosed last year after 15 years of not knowing what was going on. Having enjoyed some years of singing with our choral society, I thought I had turned into a nervous nellie when I couldn't stand up for a performance. I couldn't write if I was standing up. I would look for a wall to lean against if I had to stand. I also developed severe pain in my thighs. Lots of physio, ice and massages for this and, fortunately..., it is mostly gone now. I told my doctor I got 'shakey legs' when doing household chores, had to sit down to do the ironing etc.. He said 'Oh, that's interesting' and carried on. I saw an ENT specialist several times with MRIs, hearing and balance tests etc. Eventually he said I should see a neurologist. We had just got one here but, already, there was a 6 month waiting list. For various reasons, I asked my ENT to get me in to one sooner in Brisbane. When I saw her, she said I must come under the migraine umbrella and gave Topamax which didn't agree with me. I went back to her and, again, mentioned to her that I get 'shakey legs'. Her reply...'You will just have to get a walking stick'. I didn't go back. My optometrist is my hero! He gave exercises to do as he thought my eyes may be contributing to my feeling of imbalance. When the exercises had no effect, he suggested that I go to the Neurolical, Ageing and Balance Clinic at Uni of Qld. They put me through a huge range of tests and when I went back the second time, they said I may have OT and should see Dr. John O'Sullivan in Brisbane. After another 6 month wait, he confirmed it. The interesting thing was, I was the third person to see him that day with it!! I have been on Clonazepam up to 1 mg/day but it made me too doughy and really no help. I am reducing it now to compare with and without and maybe try something else. My older sister, who died recently, had Essential Tremor, the 'big sister' of OT but we know of no-one else in our family with it. The two doctors who I see in our family practice and various physios have not heard of OT.
Find people with Primary Orthostatic Tremor through the map. Connect with them and share experiences. Join the Primary Orthostatic Tremor community.