| I am a Canadian temporarlily living in the Geneva area. I've had primary orthostatic tremor for about 30 years. Its progression hs been very slow and the conditon was initially bothersome only in some social situations; consequently,I was thought to have a form of social anxiety. In 1996 when the symptoms began to become quite intrusive, I was referred to a neurologist who quicky diagnosed my condition as POT. An electromyogram as well as a consultation with a movement disorders specialist confirmed the diagnosis. (On reading some of the literature about this rare tremor, I realize that an early diagnosis was not possible since this particular tremor was not clinically described or named until 1984.) Since 1996 I have noticed a general decline in my condition although I have had a few periods when the tremors subsided to the point where they became manageable and my quality of life greatly improved The last such period which ocurred in 2000 came to an abrupt end once I came down with a mild cold with fever. Within a couple of days my tremors came back with a vengeance and I began to notice much more leg rigidity. (It seems that the added stress of an illness or surgery causes the tremors to increase.) This was quite a set back for me and I have gradually come to terms with the limltations it has placed on me and with the need to put into place certain coping mechanisms. At present I have significant disability from my tremor. The stiffness in my legs often makes walking at a normal pace very difficult. There are times when my whole body becomes tremulous and rigid such as signing for my credit card while standing. After leaning against an object , I am often so stiff that I have difficulty trying to walk. Although the tremors completely disappear when I'm sitting down, I am finding that I need to be sitting with my back supported. When I'm seated on a backless stool gardening, I have begun to notice that I develop an uncomfortable "restless" sensation in my legs and when I try to get up, and I am often shaky and unstable. Over the years I have tried the following medications with little or no benefical effect: Propranolol(Inderal), Diazepam(Valium). Clonazepam(Rivotril/ Klonopin), Primidone(Mysoline), Gababentin(Neurontin), Madopar(Levadopa) which is similar to Sinemet, Baclofen(Liorésal), Cogard(Nadolo) which is similar to Inderal, and PK-MERZ (Amantadine) which is an anti -viral medication that has shown some efficacy in the treatment of Parkinson's. Some of these drugs have been taken in combination. I have been on clonazepam for 3 years and am presently taking 1 mg/day. I gradually worked up to a higher dose but the side effects of drowsiness and headaches far outweighed any benefical effect so I gradually decreased the dose to 1mg. I am not happy with this medication since I feel it has affected my short term memory and my ability to concentrate while doing little to alleviate the tremors. When I was first diagnosed with POT, I searched the internet for information on the disorder. I came across The International Tremor Foundation (ITF) based in the US who then put me in touch with their affiliate organization based in England,The National Tremor Foundation, (NTF) which I joined. Although these two organizations deal mostly with essential tremor (ET) there are a few articles and references to POT in their publications. Even though the "jury" may still be out as to whether POT is a variant of ET or a completly different syndrome, I do feel that what can be learned about ET might have implications on POT. Through the British publication I have come into contact with other POT sufferers with whom I now correspond and I have had the opportunity of meeting a few of them. For those of you interested in the work of these two organizations here are the websites: NTF:www.tremor.org.uk ITF:www.essentialtremor.org I also joined an internet-based international essential tremor support group in which I was active for some time but I was the only person online with POT. Now, I periodically log on to read what new drugs treatments or theories etc. are being discussed by the members. In coping with my tremors, I follow an exercise and deep breathing routine which I do 4 times a week. Not only does exercising maintain muscle tone and flexibility but it also releases those wonderful endorphins which promote a feeling of well being.Thanks to the tips passed on by my friends with POT, I have the following useful items which make my life easier. In my kitchen I have an adjustable swivel office-type chair which I find extremely handy for cooking and moving around the kitchen. I have acquired a portable collapsable stick chair which unfolds into a regular chair. It is slightly cumbersome to carry around but when I go out with it, I feel much more secure and confident knowing that I can sit down immediately no matter where I am. I even use it if I have to queue. ( An alternaive would be to use a light stool/seat which you can sling over your shoulder.) My motto is: Have chair, will travel! - Vicki, Switzerland mabella@worldcom.ch |