D.A.K, Miami Beach
One and one half years ago my neurologist said that I had Orthostatic Tremor(OT). He prescribed mysoline, 50mg/d. My GP had no idea what my problem was. The neurologist made his diagnosis in about 20 minutes. I am now about 67 and am sure that in looking back the symptoms were there 6 years ago. I thought it was sea legs, we do a lot of boating. My Neurologist has 4 or 5 patients with OT. Mysoline has helped considerably,but, not completely. Mysoline decreases the rate of onset and severity of tremors. After some period of time it lost some of its effectiveness. The dosage has been gradually increased to150mg/d.
A high frequency of Essential Tremor(ET) exists within my mothers and grandmothers side of the family, perhaps 40%. I recently became aware that a cousin probably has OT. It is well known that ET is hereditary. It would be of interest to hear from those with OT as to the history of ET or OT in their family. There exists various opinions in the Internet literature as to if ET and OT are the same or not. My neurologist thinks the two are related because they respond to similar medications.
My condition is not getting better and is getting slightly worse with time. This is to be expected. I have not seen my Neurologist for nearly two years, but , have talked to him over the phone. His response is take more Mysoline. I am currently at 150mg per day. This is the dosage that I have been on for nearly two years. Neurologist says I should be able to go to 750mg/day. At this time I prefer to not increase the dosage.
From what I can tell from the emails on your site, I have a fairly mild condition compared to most of the others. I usually ride bike for about 8 miles each day. Legs are quite rubbery when done, but, I think that it helps overall to get exercise. We have decided to sell our boat, mostly because of my OT. I can still handle the boat OK, but, it is getting more difficult to maintain and operate. Even though when boating I am sitting down, I can tell that stress and anxiety related to boating make my OT worse. Of course this is well known.
An interesting observation. A few months ago my grandson visited. When playing with him in the shallow part of our swimming pool I could feel the onset of tremors. When in deeper water, I had no symptoms for long periods of time. This makes sense as I belive that I read somewhere that OT requires some weight or stress on ones legs.
I can still play golf(poorly). It is important, however, that I use a golf cart where I can sit while others hit. I also do not stand long to address the ball or to putt.
Regarding balance, I need to be careful of anticipated starts, stops or turns. Where steps are involved as in a theater, I quickly grab a hand railing.
Life is not perfect, but certainly it could be much worse with any number of other diseases.
Respectfully, D. A. K, Miami Beach