| The following is a letter from Michelle who has included some very good observations about OT, and has allowed us to post them here on the website. I have been treated with clonazepam for 3 years now, with no effect whatsoever, rather a worsening of the symptoms. It is true that I have never wanted to increase the dosage too much, as I distrust very much this kind of drugs. (I am a translator and I can't risk to impair my memory for example). The most I took was 1.6 mg daily.But the point is I don't really rely on possible symptom relief. I have always been convinced that OT has a cause, or several causes, and that they should be investigated. I have met with a refusal from the neurologists to "go further" and try to find a cause. You know, OT is "primary", "idiopathic", and so on. Recently, as I mentioned in my first e-mail, I found that specialists in Europe and America point to various causes (Medline - National Library of Medicine): - pontine (cerebellum) lesions or dysfunctions. - stenosis of the carotid. - deficiency in B12 vitamin. The treatments of course would vary according to the origin of the disease. I am not B12 deficient, and my carotid flow is normal. Now I want to check whether there is something wrong with the cerebellum. One doctor once diagnosed a link between it and my tremor. I am going to have a EEG next week. Another possible cause is a slipped disc (herniated intervertebral disc). I also know that in my case dental malocclusion has played a role. A stomatologist made me bite on soft resin. Total contact of my teeth brought 100% relief of my tremor when standing motionless on the street. This was experimental of course and I had occlusal treatment since. Unfortunately there is still a slight imbalance and we are still working on it. Anyway I can't be sure that it would be a perfect cure as OT appears as a neurologic disease anyway and probably multifactorial. I think that every patient affected with OT should benefit from investigations, and if doctors are reluctant to move, one should try to find one who is willing to help. Access to information through the Web is invaluable. I went to see my doctor with a compilation of my findings and he was very interested. I am aware that many physicians would not react in the same way. I have leg pains, initiation of walk is difficult, and more and more I have to struggle to walk "normally". Walking used to be a great relief from the pain of standing. I would like to know if other people have the same kind of symptoms. In the literature I have been reading, I only found rare allusions to this problem. To answer another of your questions : for 8 years my symptoms were manageable. Since 1999 however they have been increasing dramatically. I tried to go to the message board and couldn't. I think that your idea of trading information online is brilliant. Please feel free to use anything from this (much too long letter) as you like. I do hope that we (you and me, OT patients) will find a solution. UPDATE 11-19-01 Each contribution to your site brings a new and comforting light to our ordeal. It is sometimes amazing to see how close our experiences are. |