MARY, FL,USA

Dear Gloria

I was diagnosed with OT by Dr. Carlos Singer at the University of Miami's Jackson MemorialCenter in 1998( I believe). Prior to seeing Dr.Singer, I had discussed my symptoms with my Primary Care Physician, and I was referred to a neurologist who spent 5 minutes with me, and told me he did not think it was Parkinsons but probably elemental tremors.
I then went through a battery tests to assess whether it was an inner ear/imbalance problem. I went through the testing and everything was normal. I then went to another neurologist who referred me to Dr. Singer. All I did was describe my symptoms to him, and he diagnosed the condition as Ortho Static Tremors. He mentioned that the condition was identified in early 80's by a Swiss neurologist (I may not be remembering everything accurately). He prescribed Clonazepam .5mgs. and suggested I begin with 1 in the am and 1 in the pm. He said I could take up to 3 without any problem.
I asked him what caused the condition and he stated that most probably my brain had probably stopped producing a certain substance, and that really what the substance was would probably be identified upon death, if I wanted an autopsy performed.


I began by taking 2 clonazepam pills for first week, and noticed feeling a bit sleepy in the am. I consulted with my PCP and he suggested I take 1/2 in the am and 1 at night. I do the opposite because I feel I need the medicine while I am active. I have been on 1 1/2 pills for about 9 years and really feel that they dramatically help my condition. That does not mean that I am totally relieved. Standing in line at airports, waiting for buses, in general standing still is still bothersome, but it is really under control. I probably suffered with OT for about 5 years before seeking help. I'm an advertising professional, and I first noticed difficulties when I had to make presentations so I assumed there was some stress/anxiety connection. But I noticed that the tremors/pain occurred in happy totally non-stressful social situations, or simply standing up every am, while putting on make up etc., so in spite of the fact that describing the symptoms makes you feel like the listener is going to think there is something wrong with you because they are not discernible, I decided to really try to get help as I was only getting worse. As mentioned, my condition is controlled, but I still find that when I need to stand, I will look for something to lean against or simply find a place to sit.


I am now 59 years old, and have had OT for probably 14 years. My sister who is 7 years younger has not been diagnosed yet, but we know she is a sufferer and has been for probably 5 years. I noticed that one of your writers is Isabel from Spain. We are from Spain as well, and if she wants to write to me in Spanish, I would gladly reply.



MARY, FL