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Orthostatic Tremor

Orthostatic Tremor

Information, News, Research, and Discussion

Thoughts, Experiences and Suggestions from Visitors

If you have a thought, idea or an OT story that might be helpful to someone and would like it to appear on this page, email me. Indicate what you would like to include in the website and tell me how you want it signed, first initial, first name or Anonymous. I can't post everything, but I'll try.

You can also post your story and/or experiences on the forum.
Click here to go to the "new introductions" area of the forum.
Click on a name in the list below to view their story

Eric, USA

I am 79 and guess that I have had OT for 25 years or so. The problems encountered by this support group are pretty much what I have and kiddingly, I tell people that the 4 things I can't do are stand over a putt for a reasonable time (don't have a problem on the back swing), tour old homes, go to the hymn singing (standing) 2d church service, and the damn TSA lines when traveling.

We're off to Barcellona and a cruise in the western Med in two weeks and I'm nervous...no, terrified. Have a letter from Yale's neurology department that speeds us through the lines. Am trying out a Madgellan device that easily converts from a cane to a small seat and seems stable. This will be a test flight.

I am an active pilot having started at 16 and flown 10 years in the military. Presently working part time (60%) in aviation. Started way back with Clonazapam which lost it's effectiveness and have added Gabapentin. The combination attenuates the disorder. My Yale MD/PhD left to devote 100% of his time to Parkinson's. New MD this November. What the former said was that the OT is statistically rare and the drug cos. aren't interested. If they find something, it'll be by accident.

Eric

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

Daphne, UK

In 1983 I found that when I got nervous my legs would start to 'tremor'. I put up with this for about 10 years. I was absolutely fine when sitting down - so I didn't do anything about it. Then I noticed that I found it difficult to stand and write a 'cheque' or sign a 'credit card slip' so I decided to see my GP. The first GP I saw just told me to wear 'flat shoes'!! This didn't work so she told me to try 'support tights'. This didn't work either. Eventually I decided to see another GP who said he didn't know what it was and decided to send me to see a neurologist. I went to the Thomas Rowney Clinic at the 'Radcliffe Infirmary' in Oxford and saw a Dr Silburn.(this was in 1995).

As soon as I told him my problem he diagnosed it as OT right away. He had seen this before. I asked if it could be cured and he told me that it couldn't be cured but it could be controlled. He prescribed clonazepam. I started taking one .5mg tablet a day and it really did work wonders - the tremor went and I had no 'side effects' what so ever. I couldn't believe that I could actually stand still without my legs starting to tremor.

I was asked if I would mind going on a 'Research' trial and I was happy to do so. I went to see Dr Mills - the research Dr on three different occasions - I was wired up to a machine and asked to stand etc. which told him what strength the tremor was. Unfortunately I was not told the results although they were obviously sent to my GP. The research dates were:- June 1995, May 1996 and October 1996. After this I was told that the research had finished due to lack of funds!! I continued to see Dr Davis (Neurologist) once a year up to the time of his retirement in December 2005.

During this time I found that as time went by I needed to up the dose of Clonazepam and at the moment I am now taking four .5mg tablets in the mornings but I am sad to say that they are not working as well as they did at the start of treatment. I found your website very interesting and you are welcome to add this to your website if you think it will be of any help.  

PS. I am now only seeing my GP as there doesn't seem to be another Specialist that deals with OT in the Oxfordshire Area. (Unless of course your readers have any information which I would be glad to receive)  

Daphne UK

Lorraine

My name is Lorraine and I am new to this illness. I have faith that my neurologist diagnosed me after Ct and MRI and observation of other body functions.  I 've had essential tremor for 12 years and propranolol has been quite successful. Now OT has joined the tremor situation. OT is much more frustrating.

Two days after a flu shot in October suddenly my Orthostatic tremor came on.  Coincidence perhaps but worth noting.  Presently I am on chlonazepam with minor help. One dose of chlonazepam at bedtime and the other is at mid-morning. I am 79 years old (no spring chicken) but have had a happy life with a wonderful husband and three great daughters. I had breast cancer 5 years ago with no recurrance.

Looking ahead my biggest challenge is to keep interested in life around me. I realise it sounds easy to dismiss the inconvenience of OT but outside of investigating treatments for it I must be determined to enjoy what good there still exists in life. Being human  I know I will have to fight depression but I have so much to be grateful for. I can think of many devastating, terminal diseases out there so I must join the ranks of the "hopefuls".

Thank you for your diary. I feel it helped prepare myself  for a coping routine and finding other pastimes that will help me continue a useful, happy life.



Lorraine 

Helen, Canada

Hello I am visiting your website for the first time. What a relief! 

I realize that I have had orthostatic tremor for about 15 years. Yesterday a neurologist gave me the diagnosis and I am to return to have the tremor rate measured. I assume that this will provide a base line to measure any future changes against. My symptons are not extreme but they are an embarrassment and in contradiction to my overall state of health which is excellent. I dread any standing occasion and edge towards walls etc for support. I had put it down to lack of exercise and muscle weakening. However I increased significantly my exercise program over the past 6 years but noted no improvement. 

Happily though I have not noticed significant deterioration over those same years.  I would like to know more about the characteristics and causes of the problem....or is it a disease? I was interested in the reference made by Anonymous USA to playing with mercury as a child. We too spent endless hours in putting silver on pennies and chasing loose balls of mercury around the carpet! Our fingers would be black and I doubt that we engaged in any thorough hand washing routine!

Helen, Toronto, Canada

Kristene, South Australia

I noticed I had OT when I was 48years old and have had it for eight years. I noticed I had jelly legs after a bout of the flu, and the leg shakes didn't go away. My doctor sent me to a neurologist who diagnosed it manually, then on to another neurologist who tested the frequency of the tremor and confirmed it was OT. I now sit to shower, to cook dinner and hang on to the shopping trolley for "dear life" in the Supermarket. I, like other OT sufferers feel embarrassed in social settings, sitting while others stand. I get very tired and sometimes have bouts of feeling sorry for myself. However, I have a beautiful 16 yr. old daughter that I keep pace with and have not cut out any activity over the past 8 years. I am determined to keep going as "close to normal" as possible, though there are times at night, I know I am really exhausted. I use a "stick seat" in certain circumstances.  I have no trouble sleeping "out like a light". I have finally stopped asking "why me" and after eight years of trying to get doctors to research OT I have not achieved it. I tried to get the Brain Foundation to research OT but they just concentrate on Stroke and Epilepsy. I tried to get an article in the General Practitioners Magazine with the help of my doctor to raise awareness, but it was not published. Now the plan is to concentrate again on myself. I am seeing a naturopath and following an exercising program and trying to keep my weigh down, just trying to stay healthy. Keeping calm really helps because like others OT sufferers, the shakes are worse when I am upset. I tried a drug at first  but it affected my head and thinking ability, so my plan is to be drug free.


As far as thinking back on possible causes, I can not pinpoint anything but have experienced most of the problems common to many. As I child I had lung problems and took up competitive swimming. I had lower back problems when two vertebrae fused as a teenager. I trained as a physical education teacher and ended resigning as a deputy principal of a high-school, after the birth of my daughter. I had my daughter at close to 40yrs of age, after 6 years of fertility treatment. What that did to my health I have no idea. I had my teeth straightened to get a more correct bite at 42yrs of age. I literally fell apart physically at 48 yrs when I started menopause with severe hot flushes and joint pain. Not long after that, I had a bout of the flu and recovered but had jelly legs. The weakness developed into a tremor and I feared the worst. I have been dealing with OT ever since.


I am very appreciative of this site and your stories. When I first found this site, I felt reassured and less isolated. I keep looking for some commonality in our stories to find a clue. I am beginning to suspect it isn't any one thing but a build up over time from trauma and diseases. The body reaches a critical threshold of tolerance, and that my flu episode was just "the straw that broke the camel's back". Never the less I still quietly hope for a cure, like everyone else.


Kristene A, South Australia

Carole, Australia

I was diagnosed with OT a few months ago & was relieved to know that I was not alone. I want to thank your other visitors to this page that have helped me to control my shakes with medication.

I believe I have had OT for 3 years, at the time I was suffering  stress as I had 3 tragic deaths  within my family within 6 months. It was then I discovered I was shaking badly I couldn't stand to do my hair . My legs would go from under me.  Simple tasks like washing up, ironing , hand washing all became impossible over a period of time.

After 18 months I went to my Dr. they prescribed  Vallum. I took myself off that as I didn't think that was the answer. I went back to her & she sent me to a neurologist, he was no help at all told me to live with it as no one  knew what it was (not very helpful at all). I played a lot of sports particularly golf & found I couldn't even stand over the ball to hit it without shaking. So I gave golf away for a period. I became very house bound as every time I tried to do banking, PO, Shopping etc. I would go into a panic attack & would to be physically sick, shake uncontrollably  but when I  could sit down I would feel fine. I then went to another GP as I was not happy, he sent me to another Neurologist who much to my surprise, diagnosed me straight away & said he didn't know a lot about it but gave me your page to search. I couldn't believe what I read it was as though I had written it myself, it was describing my condition exactly & it was so good to finally have a name for it. I was prescribed Clonazepam & I found it too sedative.

I  searched your visitors page & found one of your visitors had used Neurontin (with no side affects )which I must say is working for me.  I feel I am in control of my life again to a degree. I am back playing golf & shopping is under control .The cost of the Tablets are very expensive which is a problem but the change in my life is worth it.

I would be happy to hear from anyone who wished to talk to me I would like to know if other people have any idea what triggers this condition , I believe mine was caused from my tragedies as I was fine before that.


Carole

George, WI


I too was relieved when I was finally diagnosed with OT in Marshfield WI by Dr. Roulak approx 2 yrs ago. I have had the symtoms of this disease since I was in my 20s and being a barber I had attributed it to standing most of the day and just a general tiredness in my legs from that, but in reality I was doing more leaning into the barber chair than than standing. I dealt with these symtoms until about 2 yrs ago when all of a sudden I couldnt stand for even a minute. Even though I leaned against the chair and clenched my toes.  When I went to Dr Roulak and he said I had a condition known as OT and that I was going to take Clonazepam 5mg 3 times a day. I thought it was a waste of a Dr appt. as I couldnt believe that this medication was going to relieve my symtoms. However I remember taking the first pill at approx 10 am and I got back to my Barbershop at 2 pm and I had to sit on a stool for my first haircut and then I started my second haircut and I couldnt believe that I didnt need that stool and I didnt need to lean against the barber chair to do my work. I took my second pill of the day at that time and from that time, to this day I have never had a problem.


I had all the other problems in malls and stores where I would have to lean on something or have something nearby that I could grab on to like others with OT. I dreaded meeting someone I knew who wanted to stop and talk as I knew that it had to be a very short coversation. Up until that time, I had never fell down but there were times that another second or two and I was going down. An embarassment that I would have a hard time handling. I am Catholic and I remember how I dreaded going to communion just for the fear of falling. My wife and children were always asked to walk in front of me and there were times that I grab them on the shoulders as a sign of closeness, but the real reason was that I felt I was going down.


Anyway, I read where one OT patients had TB, I also had TB when I was 5 yrs old and I was treated with the medication they used at that time. I remember one of the treatments was  an injection in the butt for  a period of months each day.I dont know what that medication was. I also want to add that I was in my early 20s when  these  OT symtoms started and it was at that time that while playing basketball the rim broke off and struck me in the head. I suffered a severe concussion at that time which gave me a headache for 3 days. Whether this is related to OT I dont know and I forgot to mention that to my Dr. I am in my 50s and I do most everything that any other normal 50 yr old would do, in fact I still jog about 31/2 miles a day which I had been doing prior to treatment for OT the only thing is when I was done jogging it felt like I was going down so I had to keep walking. Gloria thanks for this web page and it sure help me realize that I wasnt alone with this disease. I like so many, am happy just to know what my problem was and that I can deal with it.


Thanks for listening


George.WI USA

Christel, BC, Canada

I have been reading your website since July 2004 and it was such a relief of finally find other people in my situation.  I think I have been suffering from OT for about 7 or 8 years now but only became quite noticeable about two years ago.  I always wondered why my legs would shake when I had to stand in social situations or at work.

About a year ago I finally asked my Doctor about my balance problem and shaking legs and he referred me to a wonderful neurologist in Vancouver.  He did a variety of tests and told me it wasn't in my head and I definitely had a balance problem.  He mentioned I had an orthostatic tremor at that time but I did not realize then that it actually was a condition.  After 6 months and a battery of tests including a MRI  I was referred to a specialist at the University of British Columbia at the Parkinson Research Centre. He and his various other doctors I saw explained that I did indeed have OT but it was very rare and research was still being done.  I almost felt relieved because I finally knew I wasn't crazy and I actually had something wrong with me. I found your website the next day and it was exactly what I was experiencing.  I started on a course of Clonazepam and worked up to 2 pills twice a day.  I was quite drowsy for the first while ( my boss was getting quite worried about me) but I soon levelled off  and got on with my life and work.  I try to exercise as much as possible. 

My job is quite physical and I stand all day but fortunately I am able to lean most times so I can handle it.  Some of the other jobs I used to do I had to give up but on the whole my work place has been very understanding.  I work in a fruit packing house and fortunately do get a few months off a year.  I also am an avid gardener and find I can handle most of it but I had to adjust quite a few of my garden beds so I can reach them.  I tend to use a small stool at times to take the pressure off my legs.  Bending over weeding for long periods of time is becoming harder to do so I will have to adjust as need be. I tell people that I have a balance problem and most are very helpful by lending an arm or finding me a place to lean or sit.  Standing in lines are the worst, especially  at this time of year, in stores.  Also stand up social events which I tend to miss.  My husband is really great and always there when I am having a bad moment.  Sometimes my legs shake and even ache very badly.

On reading your website today I notice Gabapentin was mentioned.  I have been taking it for about two weeks now after an incident with a severe back spasm which somehow caused a numbness in the upper part of my right leg.  I had severe pain in the leg until I took the Gabapentin and so now all I have is surface numbness  but also to my dismay a disminished amout of power in my leg.  My Doctor today finally said I should see my specialist again..  Thank God as I have felt in limbo for the last while.  No specialist mentioned a followup as if there really was nothing they could do. The two drugs I am currently on don't seem to help my tremor much but I am afraid to stop the Clonazepam in case it is acutally stopping me from getting worse. I a 54 year old female and live in British Columbia, Canada. I just wish I  knew more about why I have this and if I will get progressively worse.


Thanks. Christel, Canada

Iris, New Zealand

After having been diagnosed with P.O.T.  14 years ago,  I have only met one other lady with this problem.  I am thrilled to hear from you.  In 1990 Professor Marsden in London diagnosed P.O.T. for me at the "Institute Of Neurology ". Up until then doctors in N.Z. said it was all in my imagination. So when I realised it had a name I felt I wasn't going mad after all. I have had OT for 20 years and have been looking for someone else with this problem.

I have only met one other lady with this problem. I have tried to not let it interfere with my life, but I am sorry to say it is beginning to make life very difficult. I am 71 years old but still try to maintain an active life. I have married again after my first dear husband died suddenly.  I would love to hear from anyone to compare notes.

UPDATE: October 25, 2004

Have travelled all over the world spending 4 holidays in London, through the Panama Canal, over the Canadian Rockies - Vancouver to Toronto, toured all round U.S.A. My husband and I took a trip and went across U.S.A on to U.K.then Scotland over to Norway home via Vancouver. I have tried not to let P.O.T. stop me doing anything. But now I am sorry to say it is becoming worse. I am on Primidone 4 & 1/2 daily .

After reading some of your letters, I would like to tell you of something which I thought were not relevant but now I wonder?

1938 no anti-biotics then.

When I was 5 years I had had a lot of chest problems bronchitis, whooping cough.  I was sent to a specialist who was some distance from where we lived who after examinations said that I had T.B. I had to stay in hospital for 1 month then when they allowed me home I had to have complete bed rest for 2 years. Not even allowed to walk to the toilet. After 2 years I was allowed up but could not walk at all, so I had to learn to walk again-- 1 hour a day for a week and then the next week 2 hours a day and then on till I regained some mobility.    
      
We then moved to our Capital City Wellington and my mother took me to see the Chest Specialist there who after taking many tests said I had never had T.B. in my life.   I started school at 7 years with 5year old children and felt very much out of my size !! I just wonder if this 2 years bed rest had any thing to do with P.O.T. ? After that I went right through school and never had another thing wrong with me till now. I married and had 3 little girls who are all and now have 7 grand children and 1 great grandchild.

I do not drink any drinks with caffeine e.g. tea or coffee I do find I cannot walk far 100 meters and I become very tired. After lunch every day I have, to have rest or I cannot last the day out.  I am thinking about buying a small shopping scooter as I have been unable to do Christmas Shopping for 10 years  Keep up the good work on this web site Please let every one know about my experiences.

Thank you,    

Iris 

Anne, Australia

I have just been diagnosed with OT and am still feeling a little shell shocked.  I have been aware of the leg tremors for probably 2 - 3 years but in the last six months it has got worse.  My balance was the thing that convinced me to look into it as I have been a just- for- fun belly dancer for about 5 years and I also found I could not keep my balance during some yoga exs.  I began to think I had MS when I started to fall against the wall of the shower and could no longer stand to dress myself some mornings.


Standing still for more than 30 secs. is impossible but this week have purchased a "shooting stick" and have also swallowed my pride and dug out my late mother's folding walking stick which has proven to be the right thing to do.   My quality of life worries me a little. I suffer from depression and am being treated for it (prior to this) and it is also not quite a year since I had breast cancer resulting in a left breast mastectomy.  To the great relief of my family and friends and the wonderful man I have in my life, I am retiring from my schoolteaching job in 3 weeks time.  I think it is the right thing to do. With everything that has happened I feel wrung out. 


I am by nature, a bright and bubbly person who enjoys a great social life and the company of my friends and my man.  My 2  married daughters live far away but we are in constant touch and now instead of driving to visit, I will fly or catch the train. They visit me too. I do look forward to giving up the stress associated with teaching and will  now have time to do some other things which interest me.  I feel very fortunate in the love and support from everyone and hope that will be enough to help me face the hurdles which I am beginning to realize are ahead of  me. I am pleased there is a network out there and am happy to communicate.


Anne

Anonymous, USA

I was happy to find your web site and no doubt when hopefully a cure or controlling treatment emerges you will be first to report it. I am a 73 year old retired physician with symptoms of OT for at least 18 years. At first it bothered me more when standing to give a speech or playing a violin solo and I presumed it was performance anxiety - but I more and more noticed it in all standing situations, even when welding or operating a machine in my home shop. About 7 years ago I broke down and consulted a neurologist who made the diagnosis with his medical internet sources. I'm sure other OT patients have more severe symptoms, in fact most of my acquaintances are unaware of my leg tremor. It seems to be very slowly progressive and I expect to put up with it if I live to 95.

I was tried first on a beta-blocker, I forget which, with no benefit. Next, Klonopin, which my wife said made me like a zombie but no benefit. Following this I took Neurontin for 2 years and then Topamax for 1 year. Both of these medications I wound up taking in dosages double the recommended maximum and neither had any benefit, as proven by the fact that when I stopped them my symptoms were no worse. I have been on no medication since 12/1/03.

My neurologist subscribes to the conventional view that OT is a variant of essential tremor. I doubt this, but whether or not it is a form of essential tremor, what causes it? I have wondered if it could be a late effect of heavy metal exposure. I remember as kids we were always rubbing mercury on pennies, and I re-canvassed 2 canoes using lead oxide. I was never careful about hand washing on these occasions. Could it be virus-caused? Recall that most of the people who survived the 1918 flu developed Parkinson's disease starting about 1955. We don't know. It would be a good start if some researcher would contact all OT patients and record all illnesses, immunizations, toxic exposures, family history, etc.; analyze this with computers, and of course compare this data with the same from a control group.

I check in with my neurologist from time to time and presently he has nothing to offer but he keeps up and I hope something worth trying will come along.

Mainly I'm writing to thank you for posting the web site on OT, and you may just help to solve the puzzle of this condition with your information exchange.


Anonymous

Terry, South Africa

I have had OT symptoms for a little over 10 years; they first appeared instaneously on a flight from Europe. I was under very extreme business stress at the time - without a doubt, the worst of my life. Eventually I was referred to the Benjamin Franklin Hospital in Berlin, Germany and after approximately a week of intensive investigation, they in turn referred me to the neurological hospital across town.


Standing was my only problem. (Prof. Lempert of the neurological hospital had apparently hear of the disease while studying at Great Ormond Street Hospital in London). After exhausting all conventional and alternative medicines and healers I ended up with what can only be described as a "witch doctor" some years later. He really seemed spot on in his diagnosis and made me go back to the 6 months prior to manifestation of the symptoms. In confirmation of his diagnosis, when I go on holiday and relax the symptoms certainly do ameliorate and, conversely, when I get angry or lose my temper at work the symptoms become pretty severe. I have had all the conventional medicines mentioned on the web-site (as well as medicines such as Stemitil and Sturgeron), but none of them have worked. I reached a low point where I was taking some 16 pills a day and managed to ding my car 5 times in a week. I then flushed the whole lot down the toilet and set about improving my lifestyle, lost 13kg and now actively exercise. This makes life tolerable. In addition, OT required me having to give up a senior position in business and I now run my own factory.


After I read your " living with OT", you described my life and reactions perfectly, and once again I believed in my own sanity and it made it much easier to get on with the joys of daily living - obviously omitting things I can not do. (Hate cocktail parties). I am 62 years of age, have 6 wonderful children (age 37 down to twins who turned 4 on Saturday last) and a loving wife to help me.


- Terry R, South Africa

Noni, USA

It was like coming home to find your wonderful site and the input from fellow sufferers. I couldn't believe it, I just kept reading stories and nodding in agreement. I have been misdiagnosed with Parkinson's, told I must have spinal surgery immediately, treated with antidepressants and outright dismissed by more doctors than I care to think of.


Finally one of six neurologists I have seen (most of whom recommended spinal surgery)  told me I had a "standing tremor" which would likely not put me in a wheelchair and there was nothing to be done. This was 15 years ago and what started as a slight tremor when giving a speech progressed to not being able to stand in one place for 30 seconds, let alone bend over at the waist (flushed face, wet hair, shaking, clenched toes, pain). Looking up "tremors" on the Internet I stumbled on your website. Everyone here has the same symptoms and I am not the only one in the world and I am not imagining it. Whew! I'm 76 but of strong constitution. Walking is easy for me and I have adapted as best I can to standing problems. I outright tell people I have a "balance" problem and I have to lean on a wall. I don't take any medication although some neurologists put me on Klonopin and then on Sinemet, neither of which did a thing.I have withdrawn a lot into myself and just find it easier to stay home or plan sitting activities. Others don't understand because I look very healthy.


Here is a weird story. Last summer, I was on a yacht in the Mediterranean and my daughter and I were sitting on the steps that open up from the hull at a 45 degree angle. We had our feet  in the (cold) water and as other boats would pass in front of ours we would be momentarily submerged by their wakes I would say waist-high.  Sort of like being dipped in cold water.  We stayed there about 20 minutes, then swan off and around to the side to climb up side ladder. When we got on the deck, I was amazed to find I could stand unaided, run, and my balance was temporarily restored, this lasted for an hour or more. Don't know if it was immersion in cold water or the fact that circulation was stimulated. It was a wonderful feeling, one that gave me hope that there is a cure if it could only be found.


In the meantime, I am going to an integrative doctor. My approach is three-pronged,detox, nutrition and Bowen. The Bowen Technique has been spectacular for me, almost no more arthritis pain and can move easily, can stand for up to 3 minutes, with some discomfort. I no longer have depression.  I think my OT started after a bout of shingles, but not clear. I had to quit work five years ago because it was too stressful physically and mentally. Also, I had a kidney stone and I think the anesthetic made the tremor worse for a long time after the operation. I have a silicon chin implant (1990).I am A positive blood type. Have had numerous auto accidents and broke my coccyx in a fall. Have flat feet and pronated ankles.


Again, thank, thank you, thank you.  


Noni , Fl

Paul, USA

What a relief it was to finally be diagnosed with OT. For six years I had been doctoring to discover why, when standing for any length of time, I would experience leg tremors. As time went by the tremors increased and I learned very quickly to sit or lean on something when I felt one coming. One of my first encounters occurred while hiking. As long as I was hiking I was fine but when the group stopped to rest I had problems standing still. Eventually I had to quit hiking altogether. I am a 75 year old retired policeman living in a senior citizens community. Neighbors are aware of my problem and are quick to accommodate me whenever I need a place to lean, to sit, or to walk away.


For the past six years I have seen several doctors. Each ordered blood work and an MRI and neuropathy tests and none had an answer. Finally, my new family physician referred me to Barrows Neurological Institute in Phoenix. In May 2003 I saw Dr. James Frey, M.D. at Barrows Institute. MRI's performed at Barrows Institute indicated that I had had two mini strokes within the past 5 or 6 years. I was about to give up when Dr. Frey ordered another neuropathy test. I agreed to have just one more test. This test was given by Dr. Kumar from the Neuromuscular Research Center at Barrow Neurological Institute, St. Joseph Hospital and Medical Center, Phoenix, AZ. HALLELUJAH!! On Aug. 11, 2003 Dr. Kumar, halfway through the neuropathy test, stopped the test and told me I have OT. Dr. Kumar prescribed clonazepam 0.5 mg tab twice a day. Within 10 days I noticed a definite decrease in leg tremors. I am experiencing a problem with my balance. Prior to taking the medication I was able to ride my bike and I am now afraid to try riding the bike because of my balance problem.


I am going for physical therapy, the main thrust of the therapy is to strengthen my abdominal muscles and work on my lower back muscles. Hopefully, this will straighten my walking posture and I will be less inclined to pitch forward. We are also working on my balance. Please accept my thanks and appreciation for your web site. It is gratifying to know that I am not alone with this problem. Feel free to use this information. Several of the web site correspondents mentioned that tremors are often brought on by stress and anxiety -- something my wife noticed and was happy to have verified.


Paul, Az

Maggie, Tulsa, OK

I have been reading your website for at least a year trying to convince my doctors that this sounded like what I might have. I have probably had these symptoms for at least six years and have seen five doctors before being diagnosed. My Neurologist in Tulsa had never heard of this condition. As so many others, I had had all of the MRI's and blood work done and still no diagnosis. Finally, my neurologist in Tulsa, who is a fine doctor, but just was at a lost, referred me to Baylor College of Medicine in Houston, Texas where I was examined by Dr.Joseph Jankovic. He is the founder and director of the Parkinson's Disease and Movement Disorder Center. After reading my file, which included my mention of your website and the similarities to my symptoms, he very quickly determined I indeed had OT. Their center is a research and teaching facility and they video taped and interviewed me when they used the machine to test the frequency of the tremor.


I would encourage anyone who thinks they may have this to consider visiting this center if it is near where they live. We were seen at our appointment time and all of my questions were answered. I am taking Clonazepam twice daily and have been on this medication for about a month. At first, it made me very drowsy and dopey feeling. That seems to have left for the most part and I have noticed about 50% improvement in my tremors. I just turned 50 two days ago. I worry about taking such stong medications for years. I forgot to ask the doctor about the progression of this disease. Does it always continue to worsen? My progression has been very subtle and slow.


I am scheduled to return for a follow up visit in December. I was so grateful when I first found your website and read about others who were experiencing similar difficulties in social situations. I am glad I finally have a diagnosis, and find your website helpful. Hopefully we can learn from one another. You have my permission to share this with others if you think it is helpful.


- Maggie Tulsa, OK

Lee, England

In August of 1999, I was painting the outside of my house when I noticed my legs shaking. As I hated heights, I put the shaking down to fear of heights and took little notice. My daughters were shocked to notice the tremor in my legs when standing. It had crept up on me slowly and I had learnt to compensate for the tremor by propping myself up and leaning on things. In February 2000, I visited the Doctor. She did various tests and made an appointment for me to see a neurologist. In June 2000, I was diagnosed as having Orthostatic Tremor. He also arranged an MRI scan to be sure that there was no other cause for the tremor. The scan, in the Autumn of 2000, revealed compressions on my spinal cord in the neck between C4-C6. I was sent to to the Neurosurgery Department at Oxford. In December 2000, I was told that the compressions might easily be the cause of the tremor. Surgery was necessary to stop the compressions making life more difficult but any improvement would be a bonus. I was operated on in November of 2001, by which time the tremor was exhausting.


In December, I developed numbness and pins and needles in my hands, legs and trunk. In January 2002, after another scan, it was decided to operate again to further relieve the pressure on my spinal cord. In October 2002, I underwent further surgery. The operation caused the numbness and pins and needles to disappear but the tremor, which had diminished to a great degree, returned with a vengeance and I am back to square one with a diagnosis of Orthostatic Tremor. The discovery of the compressions on my spinal cord was fortuitous and the operations necessary, as sooner or later it would have led to severe and perhaps irreversible damage to the spine but appears to not have been the cause of the tremor. I followed a daily exercise regime to strengthen and improve muscle control in my hips and legs and I learned to relax for the first time in my life. The neurologist wants to try me on Clonazepam but I am resisting at the moment.


Lee, England

Barbara, Georgia

I just happened upon this website and for the first time since my OT onset seven years ago, I am able to "touch" someone who knows how I feel. I know exactly when my problems started and how -- I'll try to be as brief as possible, but there's been a lot of ups and downs in these past seven years!


I came in contact with a child in my child's kindergarten class who had "Fifth Disease". If you know much about this, it is a little viral thing small children frequently have without any problems -- a little rash on hands and face, a little bit of fever a few days then it's over. It's name "Fifth Disease" has something to do (I believe) with it being the fifth most identifiable rash ??? Anyway about a week after coming in contact with the child I had a rash that broke out only from my knees to my ankles, followed by extreme pain in my elbow and knee joints only. This lasted a couple of weeks, then followed with a rash on my face for a few days. The only other symptoms I had were extreme fatigue. I saw my doctor at the onset of the rash and blood work was done to determine that there was a parvo virus present.


Within a couple of weeks the pain in my joints was gone, the rash went away, but the fatigue continues....seven years later. I started having problems standing without support, and my legs seemed to feel like no muscles, just jello. My physician referred me to several other doctors, including three neurologists at separate facilities -- none could seem to reach a diagnosis. They were very suspicious of MS at the beginning, but blood work ruled that out. Finally after nine months I was seen by a neurologist at Mayo Clinic who did the studies and determined a diagnosis of Orthostatic Tremor. For the past seven years I have continued to see a neurologist and have taken many different medications including Clonazapen, Neurontin, Tegretol, Depakote, Mirapex, and maybe some others. Clonazapen and Neurontin have provided the best results; however, I had to discontinue Neurontin because it made my feet retain lots of fluid, something I had never had problems with before.


Personally, I believe I did better on Neurontin than all other drugs until this problem developed. I am now on Clonazapen again after the most recent attempt at a new drug, Lamictal. It just didn't seem to help the tremors. Life for me did a complete turn around seven years ago. I've always been a high-energy person who never would even consider lying down for a rest during a day -- only night time was bedtime for me until then. I did yard work, house work, cooking, helping others, playing with my child, even jumping on the trampoline and playing chase, etc.


All of those days are behind me. I now have help with my housework, cannot do any yard work, cook sitting on a stool or more often pick up something for meal times. I'm tired all the time. I catalog order for shopping -- cannot stand long enough to do any shopping. My groceries are purchased a few items at a time, preventing me from having to stand in line at the checkout -- also I choose a grocery store that puts the items on the belt for me; I cannot handle picking up items and then writing a check for the items --- my once perfect penmanship is almost unreadable. I avoid any lines, and I'm sorry to say the disease seems to be progressing worse as time goes on. I'm reading the site to find out if there's any information about foods, etc. that might help -- I'm already onto this blueberry thing. I'm willing to try anything to get some qualilty life back.


Sincerely, Barbara

Rich, Missouri

I am a 62 year old male living in the midwestern USA.


After an increasing problem with weakness and trembling in both of my lower legs which had come on gradually since the early 1990s, I finally started my search on the internet in early 2002 to see if I could find a description that fit my condition. The only problem with trying to find information about a health problem is that you really need to know what to call it. Search engines don't respond too well to "you know, my leg problem". After working my way through the words unsteadiness, restless legs, shaky legs, Parkinsons (oh, please no!) trembling, and tremor I finally found the www.orthostatictremor.org/ site (thank you, Gloria).


I was so grateful to find this website with it's set of experiences and descriptions accompanied by all the medical jargon fitting my symptoms that I printed everything out and took an inch stack of papers to my general practitioner. He had no information on the malady and willingly referred me to a neurologist about 1 1/2 hours away in Kansas City (we live in a rural area). I then saw Dr. Charles L. Weinstein of Neurological Consultants in Kansas City in June 2002. He listened to my internet based self-diagnosis and looked at my stack of printouts briefly. He then had me walk back and forth in the examining room as well as attempt to stand still. I explained that when standing still, in order to maintain some semblance of vertical static control, I feel like I'm trying to grip the floor with my toes right through my shoes. He then had me sit down on the examining table and thumped me on the knees with his hammer. That was the extent of the exam. He said that I was correct, that I had Primary Orthostatic Tremor and that it was very rare (oh, thanks). Then I asked Dr. Weinstein how long he had been in practice and he said over 40 years. I asked how many cases he had seen of POT. He said that I was the second one (!) and that was why no one seemed to be doing any serious research on the disorder considering that it was not life threatening. When asked how to treat it, he said that various drugs used for controlling Parkinsons had been used but usually without too much effect or success. He wrote a prescription for Lorazepam which has proven to be useless in controlling my POT symptoms. I have not been back to see him. At this point I do not take anything although I am encouraged to see what some of the postings on this board say about Gabapentin.


He did say that there was a medical school research group that was studying the disorder in Arizona but that they were having problems finding enough people for their studies to make them effective.


Noting what some of you all have said about the social embarrassment (which I can certainly agree with) I have found a useful way to help the other person you are conversing with (as you pace back and forth like a tiger in a cage) to understand quickly using the following method. I simply say to them, do you remember what it was like to learn how to ride a bike? (They always say yes.) And do you remember when you found out that the only way to remain upright and to maintain your balance was to keep moving forward? Well, that is what having orthostatic tremors is like. And they seem to understand immediately.


One other thing that I have found helpful is a product called a Sport Seat. It is light and very portable and looks like a cane when closed. In fact you can carry it in one hand and use it like a cane. But it quickly opens to a little three legged stool that gives you that needed stability when you are in a setting that requires you to stand in one place. You can find one and order it from Sport Seats International Ltd. in Garland Texas (800) 567-1898 and for those of you outside the USA TEL:(972) 485-8300 or on the internet at http://www.handyseat.com/ or by email through . It is a quality product, doesn't cost much and works exactly as advertised. The other day, I used mine for the first time in a library while perusing bookshelves - what a lifesaver! I'll write again if I develop any other answers to our mutual problem.


Meanwhile - keep smiling (it makes people wonder what you're up to).


Rich in Missouri

Richard, Florida

My introduction to OT began in July '02. I was standing on the patio watching some men working on electrical wires. I watched them for about 10 minutes and when I turned to walk to the house my legs did not cooperate. It was only for a few seconds and then I was able to walk normally. The next episode occured at my doctor's office where I stood in the doorway of the examining room for several minutes, and when I turned to walk the same thing happened again. There were four more occurences one of which happened while I was walking and I had to hold on to a wall for support.
On my October 9th visit with my doctor I gave him a written history of what had been happening. He then had me stand in front of him, and in about seven minutes he witnessed the leg tremors. He immediately sent me for an MRI as a follow up to one I had done a year earlier. He then arranged an appointment with a neurologist for the following day. The neurologist, Dr. Shawn Shea examined me, gave me various tests and then had me stand for several minutes and he too witnessed the tremors in my legs. He diagnosed the condition as OT and read me a description of OT from a medical book.
So that is the background and where I am at now. One thing I want to mention is that when I am standing I feel heat rising from my ankles half way up my lower legs and that is a warning sign that the tremor is starting. Another thing, when the tremor in my legs starts and I try to walk I feel as if I am walking on coil springs. The treatments that Dr. Shea is trying now is a medication Primidone. He started me on 50 mg's, and I am now taking 250mg's. So far the results have not been promising. I cannot stand for several minutes without tremors, nor can I walk a block without tremors.
I have been reading the 'case histories' on your website with great interest and commend you for the fine work you are doing. I hope something in my case history will be of use to someone

UPDATE-

I last wrote in November 2002. It is still shown in the case studies. Here is the latest on my condition which I think is quite miraculous. From November 2002 through 2003 my orthostatic tremor condition did not improve. I took primidone, neurontin and one other medication prescribed by my neurologist, Dr. Sean Shea, a kind and caring physician. The medications were not effective. In late March 2004 I noticed that my tremors while standing were not so pronounced. Not only that, but I was able to walk without tremors occurring. It seems that for now at least the tremors have ceased. I believe in the power of prayer, and I am convinced that it had a great deal to do with this. So that is the story. This condition started suddenly and has stopped just as suddenly. I just hope it doesn't return.


Richard

Maureen, USA

After 9 years and 9 neurologists, I finally have been diagnosed with OT. At first, I thought "no joke"--you are simply describing my symptoms. I always knew I had tremors when I stood! It was interesting to read some comments on your site that I can really relate to.


At first, I was misdiagnosed with MS, then there was a thought of "Gulf War Syndrome", so it was helpful to learn others "can walk", but just "cannot stand"! I have had to modify my job twice in the past 9 years; first I was a RN in the intensive care nursery--being "unsteady" and off-balance" just did not go well with starting IVs on tiny patients. So I became a Pediatric Nurse Practitioner until the tremors spread to my arms; trying to hold a little one down to look in his ears or mouth would "trigger" the tremor; so now I am a Family NP in internal medicine.


Although I'm not thrilled to know OT is so rare, and the cause is unknown, I am thankful there are a few medications to treat the symptoms, and I'm glad that so far I've not heard anyone reference "cognitive" deficits, which was a concern when I was dealing with the MS diagnosis. I've started therapy on mysolin about 6 days ago; does anyone else notice that fatigue-like excessive walking makes OT s/s worse? Does anyone else have a problem with leg/foot cramps?


- Maureen RN, USA

Eleanor, NJ, USA

I am lucky, and I am unlucky. I am lucky because I have a lot of support. I am unlucky because I have OT. I've had it for about 10 years, and I'm currently 81 years old. Initially, in 1993, I visited my family internist complaining about leg tremors. He scheduled a spinal MRI, and then referred me to a neurologistin the Red Bank, NJ, area, Dr. Philip Ilaria. This neurologist assured methat I did not have Parkinson's Disease and prescribed Klonopin and Sinemet.Neither helped. I then went to another neurologist, also in Red Bank, Dr.Alan Pertchik, a Diplomat of the American Board of Psychiatry and Neurology who practices at Riverview Medical Center. Dr. Pertchik continues to treat me. Between 1995 and 1997 we tried Zoloft, Inderal, Mysoline, andNeptazane, all with unsatisfactory results.


In 1997 I visited a neurologist in Jupiter, FL, Dr. Sonia Neuz, who recommended balance therapy and Tai Chi. I did not follow her recommendations. She felt I had "essential tremors" and said that since this was not a killer disease, not much research has been done to find a cure.


Also in 1997 I visited Dr. Scherazad Musaphir at Lahey Clinic in Boston, MA.She had no medications to prescribe but referred me to Dr. G. Rees Cosgroveat Massachusetts General Hospital in Boston. Dr. Cosgrove examined me and subsequently presented my case at his Movement Disorders Conference, where it was agreed that I had OT. He considered, but did not recommend (due to my age), ablative surgery, and suggested resuming Mysoline and Clonazepam,which I did.


I then went to Dr. Richard Lehman, a neurologist at the Robert Woods JohnsonHospital in New Brunswick, NJ. He had been recommended to me by Dr.Cosgrove and was closer to my home. Dr. Lehman confirmed Dr. Cosgrove'sdiagnosis. I returned to Dr. Pertchik in late 1997 and he prescribed Clonazepam. I discontinued this drug in 1998. I started Depacote, but discontinued it after it proved ineffective.


I then learned about Dr. Mitchell Brin, Associate Professor of Neurology andDirector of the Movement Disorders Clinic at Mt. Sinai Hospital in New YorkCity. He and his staff all but drooled when they saw a real, live OT case--we are so rare. He had me see a Dr. MacKinnon, a physiologist, who measured my tremors. All of these people were doing the same thing my home neurologist was doing: experimenting. We tried Clonazepan again, Mysolineagain, and Propanalol.


Many of the medications not only had no effect on controlling the tremors but also had adverse side effects such as acid stomach, depression,grogginess, fatigue, and light-headedness, which led to my discontinuing them. In recent years I have been using a stool in the kitchen when I cookand I have a bench and a bar in my shower.


You can see we haven't been just sitting around waiting for this curse to go away. My husband has been most supportive. He has been my legs (andbrains!) most of the time. But then, there are the times he just doesn'tunderstand because he doesn't have OT. And I guess I was lucky in anotherway, too: I was never misdiagnosed.


I am currently on Neurontin, Propanalol, and Topomax--a new one. All we can do is hope one of these drugs, or a combination of them, will help orthat one of the drug firms will come up with a new drug that works--maybe this Topomax?


I, too, would love to hear from others of you out there with this same mortifying, humiliating affliction. Good luck to all of you.


Eleanor NJ

Norma, CA,USA

Your web site is an excellent resource for those of us who have this mysterious malady. Perhaps some day the mystery of its cause and cure will be solved because we are willing to share our experiences and concerns.


My diagnosis was made after about five years of noticing the onset of tremors. The physician to whom I first mentioned the problem said he had never heard of such a thing and when I asked if there was anyone else I should consult, he replied, "No." After a few years, when the tremors did not disappear and I finally convinced myself that this was not my imagination, I consulted a young general practitioner who was not long out of medical school. She seemed to know what it could be and immediately referred me to the neurologist, who agreed that this is a rare disease and who took the time to research it. I have been, since then, taking a small dosage of Mysoline, but have noticed recently that it is becoming less effective. I will be increasing the dosage gradually, with my doctor's approval, and hopefully will get to a more comfortable level.


I found the phrase used by one correspondent,"coming out of the closet" to be particularly apropos to me. Because I look quite normal I don't like to use a portable seat, but I am always embarrassed to be trying to find something to lean on, or a place to sit when standing in line or, worst of all, at a social function. Or trying to have a conversation with a neighbor I meet on the street. My dilemma is whether I should just keep moving and have them think I am snooty, or try to explain why I have to keep moving (or sit on the curb)! My husband is especially supportive (literally), and helps by taking my place in line whenever possible or watching for when I need to be rescued. I still enjoy gardening, although I have to do much of it sitting down or on my knees. It's amazing how much you can do if you really want to do it.
I still have many projects to do that will take some ingenuity to accomplish, but I look forward to the challenge.


Thank you to you and all who share their experiences on your web site. At the risk of sounding like Pollyanna, there is still much to be grateful for in our lives.


Norma

Anne B. MA, USA

Dear Gloria

I was so happy to find your website! As with all the others, I have been to many doctors and have had many tests. I have mentioned the symptoms to every doctor I have ever been to, and they said they didn't know what it was or ignored the complaint. Finally, I found a wonderful neurologist who took the time to diagnose the condition. He put me on a heavy course of Vitamin B-12, which didn't help. However, I am still on it. I just started on Neurontin, and it hasn't kicked in yet. The information I would like to share with you is what I think was the origin of my OT.


Incidentally, I am 76 years old. Sixty-seven (67) years ago, I had Chorea, which is also known as St Vitus Dance. At that time, doctors knew very little about this type of disease, plus there were very few medicines. Consequently, he prescribed complete bedrest which my mother complied with, and I didn't touch my foot to the floor for three months. I was also taking Phenobarbitol in varying doses. I completely lost my ability to write and other things. Chorea is Rheumatic Fever in the Nerves instead of the bones.


My mother also had Rheumatic Fever in the bones. After an auto accident, when I was handling her medical needs, she was always complaining about shaking inside her body. I reported it to every doctor she saw with no diagnosis. By the way, I think my Chorea was brought on by a strep throat which was never treated, but I stayed out of school for almost a month. I have also been diagnosed with Atrial Fibrillation, and my mother was in AFib for the last two years of her life. I consented to an interview with a resident cardiologist while I was in the hospital, and his opinion was that the AFib was caused by the Chorea.So my consensus is that OT is caused by diseases contracted in early childhood and and are manifested in later life. Also the predisposition is hereditary.


Now the good news is that my mother lived to be 96 years old, and was lucid until the last six months. I hope other OT sufferers will look into their background and see if they come up with any similarities.



Anne B., MA

Elizabeth, New Zealand



My name is Elizabeth. For the last 20 months, I have been looking for answers!
A brief run down.....
I have had 25 years of back problems, including 2 surgeries, a laminectomy 1982, & another to take the scar tissue away from the spinal cord. ( during that surgery, my spinal fluid canal was nicked & had to be drained for 3 days as well as having to be kept with my bed elevated to get the fluids back to my brain?) My surgeon explained what happened & said there would never be any more surgery done again. Fair enough, I don't have a problem with that. This was in 1992. From this day on, when I went back to work, the pain level kept increasing. I probably noticed the tremors starting about 5 years later.
Until last May 2000, I worked in a bookstore for 15 years. Heavy lifting of books, constant bending & lifting, aprox 10 to 12 hours a day on my feet. (if I sat down I couldn't get up again for a couple of hours) Pain was a constant.....In trying to relieve the pain when standing for long periods, I wore an elasticized brace, but I feel in doing so , my thoracic area took the brunt. Consequently, when I lifted a tray of food at a cafe, my thoracic T7 & T8 went kafluie. I have been on so many different drugs, some that have scared me silly...a lot anti-depressants, for the pain you know! The silly thing is, that now that I haven' t been working for nearly two years, I don't have the pain.....but I still have those wretched tremors!
My tremors have increased to the point of having to use crutches when I go out. I have been using them since last Xmas just to keep on my feet & keep walking, because when one stops, the legs literally lock from the sheer strain of trying to keep upright. The tremors are so bad at times, I sweat,(pardon the terminology, but I am past putting things politely) so badly & my body temperature raises to such a point that I must look as though I'm going to explode. To date, no-one will give me a name much less even understand what it is that is happening to me. My local GP is great & has probably got the reasoning right, but not a name.I have been to numerous other medical people etc, but it is still in my "brain" you know! "you can do it if you try. Tell your feet to do it!" & so on....I am really no further ahead with a diagnosis than I was until I read your piece on OT.

I live in New Zealand & because this is being treated through a work- related causative, I have had to go through "the Process". Stress does not help, that's a given, but understanding would go a long way I feel. Reading some of the first pieces of information I read, is like looking at my life at the moment. I don't have a good concentration level at the moment , so I haven't read it all, but enough to see that this is what I appear to have.

Thank you for the chance at least to see that it isn't "just in my head!". Frustration can lead to depression etc...

UPDATE 12/20/02
Hi Gloria Thank you for your email and all the support that you have given me. I got back from Wellington today and wanted to let you know what the results were! I definitely have OT! Dr Mossman did extensive tests with me as I was a self diagnosis and he had to start from scratch. He is Neurologist and has rooms in the Hutt Valley and does his stint at the teaching hospital in Wellington. He was so excited!
The more he tested me the more excited he became! Before I had the EMG, I asked him what he thought. He said that he was certain that it was OT and it would be confirmed with the EMG. He came along to the room with me and couldn't tear himself away until he had seen the first startling results. He said that they had never had such a clear picture before and the recordings were that the tremors in my leg was 18 per second and the normal is 9. Then they did my arm while I stood and extended my arm out from my side. Again it was nearly twice the normal tremor.He had the student doctors around and in and out of his office... Dr Mossman was so tickled to think that we got an accurate diagnosis from your site. He was fascinated and told the story again and again as to what it took for me to get someone to see me in NZ .
He was horrified at some of the responses I had from the medical fraternity and was every angry on my behalf. So you can chalk one up to yourself and give yourself a big pat on the back. If I were there, I would give you a big hug and a kiss! Thank you again. He has put me onto new meds and we will see how they work out. To date nothing has worked except to make me so blah, that I didn't know one day from another! we shall see!

Elizabeth - Taupo, New Zealand

Shirley, California

I was finally diagnosed with Orthostatic Tremors yesterday and I had been treated by a neurologist for everything but.... He put me on Paxil,Prozac, etc, etc, etc and nothing worked. Finally I told my own doctor that this was ridiculous and I do not have Anxiety Attacks or Panic Attacks and I want something else done so I quit going to that neurologist and my own doctor put me on Neurontin, which seemed to help the nerves but I don't think it did much for the tremors. Then he sent me to the University of San Francisco and the neurologist there did an hour and a half test with me and sent me home.


On the 1st of April I went back again to San Fran for an EMG diagnostic test and when they connected my legs up to this machine, the needle jumped off the screen. I then came home and yesterday my doctor told me just what I have. I went in to the web site yesterday afternoon to find out anything I could about it and was amazed that everything that this site said, I have those very same symptoms.


Honestly, reading it was just like reading about ME!!!!! I am open to any information I can get at this time. My own doctor is simply baffled as he said he had never even heard of this disease. My doctor is now sending me for a series of tests to see if I need Vitamin B-12 shots. He isn't sure this will help but is still trying to find something to help me with all of this.


Shirley from California

MARY B, PA, USA

I discovered your website recently and read it through with sympathetic interest. I am an 83 year old woman now living, with my husband, in a pleasant retirement home complex in Pennsylvania.


I've struggled for about 50 years with OT, trying to cope with ever increasing problems of inconvenience, embarrassment, and misunderstanding; also with skeptical and uninformed doctors, futile examinations and medications that caused other troubles and did not work. It is hard for me to pinpoint an exact time for my first OT encounters except to say that in my late 20's and early 30's I can recall instinctively backing up against something when I had to stand for any length of time, such as while watching a parade with the children (4 of them). Then in my late 30's my legs started to shake uncontrollably at one time when I was singing a solo. That began the endless encounters with doctors who treated me for "nerves". I knew differently, but what could I do? I had to make adjustments in how I managed my housework and worked at my job as a Research Librarian. Fortunately, there was little pain involved, and I could walk quite well, participate in sports activities, and do a lot of traveling. I switched my music activities from singing and directing music to playing the piano. I guess this is one emphasis I would make--to know what you can't handle, and either find an alternate way to do it or abandon that project for another. It wasn't until about 1986, that, in a Florida neurological clinic, one of the doctors had recently read in a medical journal of cases similar to my "neuromuscular disorder" which they named "Orthostatic Tremor".


My primary reason for writing this is to tell others about a piece of equipment that has helped me greatly. It is a stroller/walker with four 8 inch wheels, adjustable handbars with brakes, removable basket, and, best of all, with a stool-height ledge seat that you can turn around and perch on to shop, or stop to converse with a friend. It is light weight, collapsible, and easily transportable in the trunk or back-seat of a car. It's readily available now in most retail medical supply stores, or (cheaper) through health-oriented mail order catalogs. I bought my walker from a mail order house which now has a great catalog website: www.drleonards.com using "deluxe mobilator" as a search word. With this unit I have been able to maintain a reasonably active and productive lifestyle. Osteoarthritis has added further complications, and I now use a cane and a wonderful electric scooter to get around our living complex. (Our apartment home is full of high stools, some with wheels, and grab rails from here to there!) Hope this will be helpful to someone.


My very best wishes to all my world-wide "fellow-sufferers"--living with OT is indeed a frustrating challenge!


- Mary B. PA, USA

Lynne, Australia

Thank you for this wonderful web site. I found it after doing searches for "Standing Shakes" & Shaking legs Syndrome" both terms that my cousin has been told her condition is. She or her husband couldn't remember the technical term so I was thrilled to read about your symptoms and also the symptoms of others. I couldn't believe it. I kept saying..'Yes, thats Val' & things in similar vein as I kept reading. Recently we had her here with us for a week (she lives about 3 hours away) and she read this site thoroughly, and she was nodding and agreeing with things, just like I was as she was reading. She got very emotional as she had finally found out that she is not alone in feeling all the things she does although she knew in reality that she wasn't the only one. It just felt that way.. It took a long time for this to be diagnosed, she was being treated for Parkinsons disease for a while with no effect. Just very sleepy and unable to do as much as before treatment. At present she is on Clonazepan and it is helping but it would be wonderful if something else did a better job of controlling the tremors. While here she printed most of this site and took it and showed her doctor since who prescribed 250mg Mysoline twice daily. She took one dose that night, when she woke next morning she was like she was drunk and had a hangover at the same time....bumping in to things, seeing double, nauseous and vomiting, splitting headaches ..the lot. She ended up in hospital and kept overnight and of course at the Doctors advise stopped taking the Mysoline straight away. We think maybe the dose was to high and he should have started her off on a lower dose but who knows. It is all trial and error and unfortunately all who suffer with O.T are the guinea pigs.


Keep up the good work that you are doing for others.

Regards


Lynne, Melton Victoria, Australia.

Peg, Maryland, USA

OT is the greatest Christmas present I've ever had. For two years I've been going to all kinds of doctors including eye ear nose & throat, orthopedec, rhumetoid and neurologists with no diagnosis. I've had MRI's with and without dye, total scans with dye,blood tests, nerve conduction tests still no diagnosis. My symptoms are at first a staggering walk, then falling and then walking with a cane and now a walker. I have no pain which seem to puzzle every doctor. I can walk by touching something. I have to be carefull leaning backward even a little without holding on, like when you close a freezer door and your too close. I will fall backward and can't stop myself. I know exactly when this all started and wonder if anyone else knows when theirs started. I had laser surgery for a partially detached retina. When I stood up my right leg was stiff and rather numb. I thought it was a nerve since I was sitting so long or even a minor stroke (I'm now 70 years old) Prior to this episode I was very active, weighed 120 lbs at 5ft1in and walked 2 miles or more every day and did 30 minutes of low inpact aroebics afterward.


At this point I though I could walk out the stiffness and continued walking but soon found I was becoming very unsteady on my feet and was afraid I would fall in front of a car. I stopped walking but still picked up my grand daughter at her bus stop until that to got to be to much. Then I started to stumble and fall over practicly nothing. Soon my family bought me a cane and even that wasn't enough after awhile and I now use a walker. I have a very hard time getting up out of chairs and I can't get on hands and knees, can't take a shower without holding on to something, can't take a bath because I'd never be able to get out of the tub. Anyway i'm sure you get the picture.


All of this and no one knows what's wrong with me until Christmas eve when a friend of my daughter's sent her the information about OT. It was like a Christmas miracle. I was starting to give up hope that I would ever know what happened to me, now I might even find something to help my symptoms. You can only imagine how happy and thankful I am to finally have an answer when someone says whats wrong with you. Sorry this is so long but I've just had all this inside me all this time and had to get it out. Thanks Gloria for this web site


Best wishes to you and yours


Peg, Maryland

Anne, Australia

We are new to the internet and my first search was "orthostatic tremor". Finding Gloria's website was wonderful. I am 53 years old and have had OT for 13 years. My husband is a sub-contractor (fitting outside awnings, carports, internal blinds, security etc.) and I worked with him for 10 years. I first noticed my legs shaking when I was standing on an aluminium plank supported by high trestles and I was extending my arms helping to support a light awning whilst Lou was preparing to fit it. The whole plank was shaking but because we live in the tropics here in North Queensland I put it down to being overheated. I didn't go to a GP for several years after this first incident - just stopped work when the shakes occurred and tried to ignore that this was happening at all. The same as all of you I went from one doctor to the next. I had blood tests, an MRI, all the nerves, muscles and reflexes in my legs tested etc. A correct diagnoses of OT was made when I asked for a referral to a neurologist. He made the correct diagnosis first time.
I was offered the range of drugs that you have all listed but thought I would try managing on my own. I found white light meditation which I learnt from a professional helped and I also go to gym on a regular basis to strengthen my legs. I am now finding that my tremors occur more frequently and things like stress and overheating bring them on almost immediately. I am really happy that I now have somewhere to express my views and that someone else actually wants to listen to what I have to say.

My husband, Lou,saw a sturdy shopping trolley (one that you pull along behind you) at the hardware shop today. It has a solid wooden top, lighter plywood sides, covered in vinyl and is collapsible. We are both going to inspect it this afternoon to see if the height is right for me to be able to sit on the top when I need to, whilst shopping. Apparently the wheels are strong enough to support an adult's weight - so sounds promising. At the moment Lou is doing the major shopping and I only do a small amount. I am finding it hard to find employment now. Originally I was a Secretary, then worked with Lou in our own Home Improvements Business (both on the job and running the office) and last year I completed a traineeship in Business Office Administration. When the traineeship ended so did the job as the company could not afford to pay full adult rates - they hired another trainee. My office skills have been updated but I found it very stressful trying to do filing, faxing, photocopying etc.even though I was able to take a chair with me there were lots of times where standing was necessary. I am going to do some voluntary data entry work at the James Cook University here in Townsville this year, in the careers department, so am hoping that may lead to part-time employment.

Thanks Gloria for your website and I hope I will receive some e-mails from anyone who wishes to correspond.

Anne, North Queensland, Australia.

Peter, California

Hi, just found your web site and am very glad I did. I have suffered with these D---- things for about 12 to 13 years. Being a recovering alcoholic (sober now for about 16 years) I have always thought that somehow I messed up my metabolism and that was the cause. My doctor has me on Propanolol-40MG twice a day and that seems to help just a little as it slows the heart down a little. The best help has been Alprazolam.5MG (Xanax). I have been taking that for about 5 years and it does help. It was prescribed for twice a day , but I only take it when needed (whenever a stressful situation is forthcoming). However, as my doctor warned me, it is now taking more and more to get the same effect. I have found one little thing very helpful- I have a " Sport Seat" . It folds up like a cane but has three legs and a very small seat. So, if I know I am going to stand in a line, like at the airport, I merely unfold it & sit down. Being 74 years old also helps because nobody even looks at me twice except in envy. One guy at the airport last year said, "It's too bad you don't have about twenty more of those, you could sell them for a profit". About a year or so ago, I was in contact with a Dr. Jacob Chodakiewitz at a Tremor Research Lab and he recommended Clonazepam - .5 to 2.0MG per day and for those that did not respond to that, Chilardiazeporide (Librium) 30 MG twice a day. He said that Propranalol was not effective in studies even up to 320 MG.


As a youngster, I had a huge sweet tooth and then when I was heavily into alcohol, that took care of the need for other sweets. Once I got rid of the booze, my sweet tooth came back with a vengeance. I could very easily eat a quart of ice cream every night if I'd let myself. However, when I do indulge in sweets, which is quite often, I find my tremors are greatly increased in frequency and intensity. In fact, after a piece of pie,cake or some ice cream, I find that I have trouble even standing up if I try to stand still. Has anyone else have that type of experience?


Peter, in Sacramento,Ca

Isabel, Spain

I am a fifty-year-old woman from Spain who has just been diagnosed with OT. My case is as follows: Two years ago I started to have tachycardia and shortly after that I started to feel unsteadiness: my legs trembled as if I was going to fall and it would pass when I leaned against something or when I would start to walk again.

At first I thought it was related to my heart disease, but when this was controled the feeling of usteadiness would not go and I was sent to the neurologist who diagnosed OT one week ago. I have been treated with Clonazepam, but it is too soon to know how effective it is. I am currently taking 0.5 mg. every twelve hours, which I should double in a few days if I dont see any improvement in my condition.

I was treated for my heart disease with Amiodarona, until July 2000, for seven months and it caused hypotiroidism so I had to stop taking it. Now it has returned to a normal level. I would be interested in knowing more about the relatioship between OT and the intake of Amiodarona, or even somebody whose case is similar to mine and would be very thankful for any information you could give me. Also I am especially interested in any information in Spanish.

Even though I do not speak English and write to you through a translator, I would like to thank your effort for putting together all the information that has helped me understand more about my own disease.

UPDATE 04-15-02
I am currently taking 3mg of Clonazepam lately but I am not feeling completely well. The neurologist in my last visit has told me that I should increase the dose to 4mg, but so far I am getting by on 3mg, but I may have to increase it now that I have returned to work. I have been on sick-leave until I could change my job, always an administrative worker for the provincial government but now I have changed to a job where I don't have to stand often or deal with the mass of public I used to have to deal with on a daily basis. So far, I manage well in my new job since there is no public and I don't have to stand for long periods of time. So far with the dose I am taking of Clonazepam I am not experiencing any side-effect.
In my last visit to my neurologist I told him about your web page and he had never heard of it but he thought it was a great idea and said he would be visiting it.
Sincerely Isabel

Kristin, USA

I'm a 28 yr old female and was just diagnosed with OT. For 3 years I have been fighting with multiple medical problems and doctor after doctor have been scratching their heads in confusion. When they gave up trying to figure out the problem, they would just send me off to more doctors. Some even tried to tell me that this was all in my head. That I was either "faking" this or imagining these symptoms. To say I was frustrated and depressed would be an understatement.

I was experiencing migratory arthritic type joint pains, severe exhaustion, weakness in my lower extremities, pain and leg cramps, mid and lower back spasms and pain, vertigo, imbalance and unsteadiness. They tested me for every disease under the sun. All of which came back negative.

To complicate matters I have a thyroid problem and hyper-mobility syndrome so my doctors always attributed any minor visible tremor to that and nothing more. Then about a month ago I developed a very visible tremor as my lower body and torso basically grew weak enough to no longer support the rest of my body. The weakness was so bad I could barely stand, walk or even move. My legs could barely support my weight and my whole lower body was wracked with hard tremors. Lying down was the only relief I would get and even then I would jerk and twitch. Sitting I could only do for a short time. More tests and MRIs showed nothing. Again I was left in the dark with no diagnosis. Never any answers, only more questions.

I was beginning to think there was no solution to this problem and even began to doubt my own sanity thinking maybe the doctors who were telling me this was in my head was true. I have always been an active person and my morale and emotional state were really taking a beating.

Finally I was referred to a young neurologist who diagnosed me with OT. Today is the first day in a month that I don't shake, that my tremors are under control and that I feel human again. I am still a bit weak in my legs but I can stand and walk. She has prescribed a combination of medications that has given me a "functional" life back. She's young, enthusiastic and very interested in my case and pursuing options, treatments and causes. It is my hope that through her treatment of me, we'll find solutions to help others.

I know I will never live without OT but for the moment I am learning that I can live "with" it. I hope you continue to improve your site and continue to network with others who have OT. Most importantly, those of us with it now know that we are not alone. So thank you again for your site, the information you provide, and for sharing your experiences.

Sincerely,

Kristin , USA

Cynthia, England

I was diagnosed with OT in 1993 in Oxford, England at the age of 50 years old. At that time I was told there were only twelve documented cases. My G.P. had sent me to a neurologist when I complained of a tremor in my legs on standing for the last five years, usually when the adrenalin was flowing it was worse and that when I was in the shower washing my hair with my eyes closed I found it difficult to keep my balance. The neurologist had never heard of the condition but the neurophysiologist had and was very excited that he had discoved this in me with a shake of 15 htz per second. I decided at that time not to take any medication and hoped things would not get any worse. In 1997 I went for a further consultation as the tremor was in fact getting worse. I could no longer stand in the kitchen for long and had to sit for most chores. I saw Dr Bain in London who apparently is the most knowledgably in this country on OT. He told me that OT may get a little worse over time and that it would then reach a plateau and there may be another step up later on, but on the whole he made me feel that things wouldn't become really disabling. He prescribed Clonazapam which I tried for only four days and stopped it as I felt it affected my concentration which was hopeless as I am a competitive bridge player!

This year I have feel that my condition is detiorating. My tremor was very bad on holiday getting on and off boats. I find that seeing or being on another movement effects my tremor dramatically, I am sure that for me there is some visual connection. Now I am having trouble with my right hand shaking. Friends have told me my writing has become like a old persons writing, which I had not realised. Recently I have sudden violent shaking of my hand for no reason and then it stops.

Yesterday I had a consultation with another neurologist in my own county and he said I really should go on to medication. He also told me that he did not think I would get much worse since I had already had it for over ten years. I think time will tell. I am starting medication once my G.P. has received his letter. I mentioned Gabapentin to him as the letters on this website seem to suggest it is helping but he also suggested some of the Parkinson drugs he has found helps some people. He said no trials had been done with placebo's so it was a matter of trial and error. I am interested to see what happens.

I have had a lot of comfort from Gloria and her website which I discovered a couple of years ago and to know that one is not alone with this condition, which I certainly felt back in 1993.

- Cynthia Gloucestershire, England

Walt, USA

I contracted orthostatic tremor about 15 years ago. It has progressed very, very slowly and now, at age 71, I am is still getting by - - shaky with imbalance when standing, but able to walk quite well.

Specifically, it started quickly - - when I was still working for the Federal Government and they had an all-employee class in the auditorium. All the seats were taken so I had to stand in the back. After 10 minutes
or so I started shaking and losing my balance so I had to hold on to a chair. That was the beginning. Since then I have been to many doctors - - internists, neurologists, even a psychiatrist. The first neurologist (highly recommended) prescribed Klonopin some 15 years ago (2 mg daily - - later increased to 4 mg). No improvement was noticed. Recently, I went to Shand's Neurological Center (part of the University of Florida, and supposedly an equal to Mayo Clinic). That doctor recommended .25mg of Xanax to the Klonopin. Still no improvement.

I also had an MRI of my brain with emphasis on the cerebellum. Also a test of my auditory nerve function. Also a test of my overall nerve reaction, with "electrodes" taped to various parts of my body, especially the legs. And, of course, tests to rule out Parkinson's and dementia. All tests proved to be negative.

The last 3 weeks he has been taking physical therapy 3 times a week. Not for a cure, obviously, but supposedly to strecth my leg muscles in various directions in case I should lose balance I would be able to keep from falling, assuming there was nothing to grab onto.

That brings us up to date. I am able to mow the lawn since I have the mower handle to support me, but I am unable to walk with the string trimmer because it must be held up slightly and consequently I can't lean on it, I wobble too much."

UPDATE 11-28-01 After reading several print-outs wherein OT sufferers switched to Neurontin after not getting results from Klonopin, I thought I'd try it. After weaning myself off Klonopin, by the time I got up to 1800 mg a day on Neurontin I started having unpleasant side-effects. My shakiness got worse and sometimes walking or keeping my balance was quite difficult.

So the moral of the story is: For those who thought about trying Neurontin, be aware it doesn't work for everyone. So, needless to say, I'm back on the Klonopin (2 mg twice a day) and feeling better, but of course still shaky when standing. I have pretty much resigned myself that I'll just have to live with it.
-Walt, USA

Chuck, USA

I was thrilled when my daughter found your site while looking for information on Orthostatic Tremors. I has lost a complete description of the O.T. she had found in our local library. I found your OT resources very interesting and carbon copy of my condition. I'd like to share my story with you.

My experience w/ OT Diagnoses fall of 1996 - fall of 1997: Fall of 1996 started to notice light tremors, constantly changing my stance while standing. Using stools and chairs, or backing against walls to support myself. Went to my MD Dr. V.H. He first thought it was Parkinson's. He put me on Klonopin with no results. Jan 1997 he referred me to Dr. M.L. a Toxologist. Many different tests, I can't recall. Referred me to Neurology dept at local state University Hospital, Dr. E.P. After his initial examination he ordered the following: EMG, MRI and over a dozen blood tests to see if there was any relation to chemicals I had worked with in the last forty plus years. All tests were normal and could find no relation to chemicals.

The following is a portion of neurologist Dr. E.P.'s final analysis... several medications have been tried to include; Mysoline, Sinemet and Sinemet CR and previously he had a trial with Klonopin by MD Dr. V.H. Unfortunately all of these medications have failed to produce any significant improvement. Chuck as suffered significant side effects. The trial with the standard form of Sinemet resulted in severe dizziness, sympotomatology that suggests Orthostatic Hypotension (dizziness, vertigo) and GI disturbances. On 7/97 I switched him to Simemet CR 50/200, and unfortunately this medication failed to improve his condition... He has failed on medications used for OT such as: Klonopin, Sinemet, Mysoline and the controlled released preparation of Sinemet. I had a chance to discuss Chuck with my colleagues at Columbia Presbyterian different alternative. Suggestions were new medications Permax & Requip...

Gloria I could go on forever, but this is probably enough for now. Your web site is my first and only contact with another person w/ OT. Thanks for your insight and information. I read it several times!! Too bad we have to correspond under these conditions. I have learned many ways to hide OT - many the same as you describe. My doctor says "Posturing" is the keyword!

Chuck,

Vicki, Switzerland

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

Kay, New Hampshire, USA

I have suffered from leg tremors for 13 years now and no one has been able to diagnose anything. I have had 4 MRI's, evoked potentials (to R/O MS) and just general neurologic exam and was told I had essential tremor. However, when I researched essential tremor it made it clear that it rarely effects the legs. Today I was doing more research on tremor and found your web site and feel that I have finally discovered what it is I have been suffering from. I have an appointment with my GP tomorrow and plan to bring in all the information I printed from your web site. I am just thrilled about this because I am so limited in what I can do. I am only 45 years old and can't even clean my house without sitting down or leaning. I bought myself a stool for the kitchen so I can use it to cook and do dishes. When I shop I need a carriage to hang on to. I want to take my daughter to Disney this fall and I am notsure how I am suppose to do it - being on my legs for 4 days straight.
I just wanted to say thanks so much for your website and all the information it contains. I am not happy about my disease but I am really excited about finally determining what it is. I have no doubt in my mind that it is OT - it describes me perfectly. Wish me luck with my appointment tomorrow!!

Update:
I went to my doctor who listened intently to my concerns and she reviewed the info that I brought to her from your web site. She wrote down the diagnosis of OT on my chart and she has started me on Klonopin , titrating up. Living with this has been the most frustrating thing I have ever had to deal with. I plan to go see a neurologist just so they can do the testing on me to confirm this diagnosis, though I am convinced that it is definitely the disease I suffer from.

Update:
Well, after a neuro exam, the doctor determined that my symptoms indeed resemble OT and he is obtaining my medical records for the past 12years. He cut my dose of Klonopin back and told me to up it very slowly to see if it will minimize the side effects. He told me we would try other options if the side effects don't subside. I have a chronic headache and am drowsy on the med and I just don't feel that well, but it is helping the tremor somewhat. I will see him again in 6 weeks once he receives and reviews my records. He says he may have had 1 or 2 otherpatients with the same symptoms, but he doesn't really know a lot about it. Says it is a very difficult disease to treat and the symptoms won't go away completely with any of the medications. At least Iknow what I am dealing with now - thanks to YOU. I am sure you know the frustration I have been going through for the past 12 years. I'm 45 and feel like 80 at times.

Update:
Not having much luck with medications, although the Klonopin actually was helping more than I knew. When I went off of the Klonopin and tried the Clonidine I was a real mess. My legs shook so bad I couldn't stand it. My heart was beating out of my chest, and I was only on 1/2 pill a day. I couldn't sleep either. I actually was down to less than 3 hours sleep anight. So, I went off the Clonidine and have just gone back on the Klonopin. I will see thedoctor next Tuesday again. I just couldn't stand it without taking something and the Klonopin makes me somewhat sleepy, but I would rather be sleepy and have my tremors under some control,even though not a lot. It takes the edge off of them anyway. My MRI was fine - so I guess we are dealing strictly with orthostatic tremor. I just wish there was a cure!!! I really hate this disease a lot.

Kay, New Hampshire, USA

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.

UPDATE 102902

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 Beac

George, NC, USA

What a delight to find your website so quickly. Here is the experience we have been through for several years and now have an answer!!

My husband is a 56 year old Philosophy and Religion Professor with a BA, MA, and Ph.D.. The Ph.D. was from Columbia University with the highest honors. A very intelligent man and an "absent minded professor" slow moving in many ways. We would joke about his slowness and my speed, he was never able to keep up and my inability to slow down. He taught for 26 years at the Community College of Southern Nevada (in fact he helped start the college). We decided to take a year and go teach at Africa Nazarene University for a year, what an experience that was. He would walk slow but no real problems.

Upon our return he was having troubles with sinus, took some cold meds and began to notice the shaking and so he went to our local Doctor and he told him that he had just overdosed on cold medication and to stay away from a drug that ended with "ephrin"-which is in most cold meds. We moved to North Carolina in the summer of 1999,that school year he was progressively tired, would take a lot of energy to walk around. We just thought it was the move, no friends, family and going back in time twenty years as well as humidity we were not used to.

It was last fall I became concerned when he couldn't stand for more than five minutes, but he kept insisting it was the cold meds. One day we went to the mall. I thought, he could go to the book store and I would shop. The book store is his earthy heaven so no problem. He was in there for about 10 minutes. A girl friend had stopped me to talk when he came out with a panic look on his face looking for a place to sit down. That corked it for me, I made an appointment with the local office and we began our rollercoaster. He started with regular blood work-OK.Because of his familles history of cancer we had a colonoscopy done then too. Chest x-rays and a trip to the neurologist-DR. Tesfaye then an Mri,Cat scan and Ataxia profile blood work. All were clear.The other neurologists in the practice came to consult, they decided to send us to Bowman Gray-part of Wake Forest teaching hospital-but the first appointment we could get was not until Aug.!! this was December. They then decided to send us to Duke.

We were excited and drove the night before to Raiegh-2 1/2 hours away and spend the night. Our appointment was at 12 noon. We arrived about ten-because we did not know where we were going and it is better to be early than late. The DR finally saw us at 1:30 saw my husband stand for-at the most 2 minutes-and he was told he starts to shake at about 5 minutes. Talked AT us not With us and did an average physical-the entire time acting like we were an imposition on his time. Saw all the reports and pronounced that my husband needs to lose weight and excersise. My husband is 5 ft. 11 and about 210-mostly in the stomach. He does not drink or smoke. Needless to say, we were devastated and my husband started talking about just giving up! When we came home I reported to the neurologist and needless to say he was not happy. Our regular GP then decided to rule EVERY thing out and because of the slowness and no energy to look at the heart and make sure-so we had a stress test, heart cath, and tee-everything fine. DR Tesfaye then called DR Francis Walker from Bowman Gray and asked if he could see us in June-yes was the answer.! We saw him the 13th and our lives have changed!

We arrived at 12:30 for a 2pm appointment. At one (1) pm the nurse called usback and started to asked all the regular questions. We had all the medical information with us and she read it all!She watched my husband stand for about ten minutes-with his feet apart, had him put his legs together with arms outstretched had him close his eyes and bumped him, she caught him. She said the DR would be in a few minutes. It was 1:30 when Dr. Walker came in-1/2 hour BEFORE our apt!!!We talked and then he attached some wires to my husband right legs from what I call the heart monitoring machine. You would have thought this was a two year old with his first sucker-he became so excited and of course we did not understand.He returned to us with a very big smile and said,my nurse told me you had OT and I said no it's to rare. Well you really have it! Normal reaction with the machine is about 13-18 yours are over 30!He attached the ultrasound to him and the beat was so fast it was almost untrackable. He told us he was in the process of writing a journal article about this, he took all kinds of readings and said he would have to readjust some of his comments in thejournal, that he had only seen 5 in his career and this was by far the fastest. with all the excitement and question etc.

We finally had an answer. We will be seeing our Dr. Tesfaye soon and probably start on medications. We are making plans to alter the house, showering standing is difficult. He will at least be able to teach for as long as he wants. He'll just have to get to class in a wheelchair and that is ok. I suspect it won't be even a year before that becomes a reality but he won't have to stop teaching, his life. I went to the web to find more information and tremors brought up DR Walker as a major reacher! What a treat that was. We went shopping last night and I had my husband use one of those electric wheelchairs and he said it was the best shopping trip he had been on.

Thank you for sharing your life and allowing me to make you smile-my"slow-mo-joe husband is actually speedy gonzales inside"

Love,
Barbara

Sussie

So far I have not noticed anyone saying that their tremors are affecting there arms. By this time of night , I often find it difficult to use the computer. I have been able to walk quite normally in appearance, but if someone cuts in front of me he is quite likely to have a started expression on his face as my hand comes down guickly on his shoulder. So far these experiences have just been funny . As I have told people, I can walk quickly or I can sit down . But I cannot stand. I need a walker so when I get in places where I cannot set my own pace I can sit on my walker.. Yes I am sure I feel more conspicuous but the alternative is to become a hermit and I do not want to go down that lonely path.

- Sussie

Michelle, France

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.
I would like to mention that I took a new medication called Keppra (levetiracetam), another anti-epileptic drug, which notably reduced the tremor for 10 days. Then it became ineffective. But as there is no telling how other patients would react, I thought it was important to post this piece of information on the visitors' page. Could our new friend Kristin indicate to us what her treatment consists in ?
I am also being treated for my dental occlusion problem (it is coupled with a lingual dysfunction, that is why it is so difficult to reach a good balance). I would like to say again that each time there was an improvement, my tremor disappeared or abated. Struggling against our condition seems to be our best medication. (Finding ways of doing things we can't do) In my case, the front has been our apartment building in Paris - the staircases are being redecorated, and as it is important to me, I am on the site whenever necessary, sitting on the steps as we go up and down. I am also having small alterations done in my apartment. This way I feel that I don't give up.
Michelle, France

Sue, England

Dear Gloria,

I had written to the MRC Human Movement and Balance Unit at the National Hospital for Neurology in London? This is the hospital where the article on your website came from ' Yarrow K, Brown P, Gresty MA, Bronstein Am - Gait Posture 2001 Feb 13 (1) : 27-34. Today I received a reply from Dr.Peter Brown, Consultant Neurologist at the National Hospital for Neurology and Neurology and Neurosurgery:

"In my experience, orthostatic tremor may get worse over the years but does not develop into other conditions and does not affect other systems. Therefore sufferers do not develop sensory loss, trouble with their waterworks or memory. The problem remains confined to one of tremor, although over the course of several years patients may have more difficulty from the tremor. In the vast majority of cases orthostatic tremor has no known cause despite detailed investigation.

There is ongoing research at this institution regarding orthostatic tremor, and the person responsible for this is Dr. Gerschlager. I hope you find this useful."

Just thought you would be interested in the reply,

UPDATE 09/25/01

Having just read the updates on your Thoughts, Experiences, and Suggestions from Visitors page, I was interested to read the letter from Vicki, Switzerland. I notice that she follows an exercise and deep breathing routine 4 times a week. I would like to add to this that I have been following a Rosemary Conley course of exercise since July last year. I attend a class once a week sometimes twice and in the interim I do the exercises in my own home every morning following one of her video exercise programmes. I have a routine whereby I exercise for about 40 minutes every morning before going to work. I find that this has considerably helped my OT symptoms and enabled my balance to greatly improve on what it was in April last year. If for any reason I should miss a session I notice the difference. She is right when she says it maintains muscle tone and flexibility and also releases 'those wonderful endorphins which promote a feeling of well being'. This has helped me tremendously during a very stressful time with my job last year and having to cope with the recent diagnosis of OT last June.

I hope this is of some encouragement to other sufferers.

UPDATE 05/14/02- (the following article written by Sue was printed in the National Tremor Foundation April newsletter)

PRIMARY ORTHOSTATIC TREMOR Attitude of Employers to Sufferers
I was diagnosed with Primary Orthostatic Tremor in June 2000 after extensive visits to my GP, Consultants and Specialists over a period of nine months. My symptoms began in October 1999 at work and manifested themselves in the form of being light-headed and unable to stand. I also passed out on several occasions whilst at work and in a restaurant, although I was told that if I had a balance problem this was unlikely to happen. I found that after driving to work I was unable to stand for around 15 minutes afterwards and would stagger as if drunk.
My job at the time was Personal Assistant to the Head of an independent girls school where I was also Office Manager. After about a month I was signed off sick by my GP with a diagnosis of Labyrinthitis and given the appropriate medication. I was referred to a Balance Specialist who sent me for tests with an Audiologist where my balance and hearing were found to be perfect! I was referred back to my GP with the advice that if my symptoms continued I was to be referred for a general medical examination or to see a neurologist. My GP referred me to a neurologist but during this time my employer also referred me to the School Doctor and subsequently to an Occupational Health Doctor. By this time over three months had passed and I had been in and out of work trying to do my job. I was sent home from work in February 2000 and told not to return until I had seen the Occupational Health Doctor and a report had been received. I was seen by a Doctor in Oxford in February 2000 who sent me for an MRI scan and took a blood test. The MRI scan revealed that I had a small cerebellum and my GP deduced from this that I had cerebellar ataxia, which I was devastated to hear. However, two weeks later when I again visited the neurologist he put my mind at rest and informed me that I did not have cerebellar ataxia but he still didn't know what was causing my symptoms. As I seemed to have improved since the last time I saw him he suggested that I keep a daily record of my symptoms and send this to him after three weeks to see how I was getting on. By the end of the three weeks I had started back at work and duly sent off my diary. However, after being back at work I deteriorated and by April I was unable to stand still and when trying to walk down a corridor I would stagger from one wall to the other. By this time I was working shorter hours as recommended by the Occupational Health Doctor.
I returned to see my Doctor who recommended further tests during a day spent in hospital and having a lumbar puncture carried out. This occurred at the beginning of May 2000, I then had an agonising wait for any results as I was referred to a Movement Disorder Clinic at the end of June. By this time I was shaking rather badly from the waist down. At the Movement Disorder Clinic I had my legs listened to by two Consultants and other tests carried out, still no conclusive diagnosis was made. I was then told that I would be referred for further tests. However, it only took a week this time to get an EMG test carried out (I was told it normally takes over a year for an appointment for this test). The Doctor who carried out this test immediately informed me that I had Primary Orthostatic Tremor, I still didn't really know what this meant, but I was relieved at last to have a name given to my problem. I subsequently looked it up on the internet and found a website called orthostatictremor.org; I was one of the first to contact the site back in July last year and have kept in contact ever since. It was a great comfort to correspond with someone who knew the disorder and had only recently been diagnosed herself after years of misdiagnosis.
I started taking Clonazepam (Rivotril) at the end of July 2000, gradually building up the dosage as it did tend to make me sleepy. However, I started back at work in August and had also began an exercise programme to build up my stamina, I was keen to get back to my job after such a long time away from it. Unfortunately, this did not work out as planned as my employer told me that she did not want me staggering around in front of the parents. I was extremely upset at this statement, which of course made my tremors worse. I carried out my work to the best of my ability for another two months or so but during this time I felt that there was a definite change in the working atmosphere. The outcome of this was that I was immediately suspended from work on a "trumped up charge" and subsequently disciplined. This all made my condition worse and caused anxiety and depression. I was not allowed to return to my designated employment. This was extremely sad after loyal service of over five years.
I would like my story to be read by other sufferers and to know whether any of them have had a similar experience in the workplace, as I feel this has scarred me for life. I still continue with the exercise programme and felt that this gave me a focus in my life when "the chips were down". I have now found another job with an employer who is sympathetic to my condition and has no problems with it at all. I attended the National Tremor Foundation Conference in Stratford last year and met other POT sufferers and intend to keep in touch. I have also joined the Foundation and hope to raise awareness of the condition in my area.
Sue - Oxford, England

Pam, Australia

I am 54 years old and female. It has taken 23 years + to diagnose my condition. Unfortunately because I am asthmatic, the drugs to alleviate the symptoms are very limited. I am currently on 5 mg of Clonazepam per day (with little effect I might add). When I first started taking it, I found some relief but now I feel I am getting less benefit from it. ( I've been taking it since mid 1999). I too was misdiagnosed, generally everyone was saying that it was my Asthma Inhalers / Asthma tablets that were causing 'the shakes'. I was also told that I had 'Essential tremors' but basically no one had any idea and I was always being 'sent away to just put up with it.' I finally went to see a Neurologist and even though he had never seen anyone with the complaint before, he had just read 3 articles about it. He put his stethoscope on my legs to listen and apparently the noise of the contractions sounded just like 'helicopter blades rotating' !

After checking with another renowned neurologist at Cambridge they all came to the same conclusion, I had Orthostatic tremors. I do believe mine started when I was going through a very difficult part of my life trying to control asthma attacks and the GPs were trying all types of tablets to get the asthma under control. The tremors started very suddenly and have been with me ever since. I do find it increasingly difficult to carry out normal household duties and it curtails any social activities. I make sure I'm near something to lean against , sit down to iron and do cooking chores and try not to go where I know there can be queues.


Pam, Australia

Len, Canada

My name is Len. I am a 62 year old retiree from Nova Scotia, Canada, and I was diagnosed with OT about ten years ago. My first diagnosis, several years earlier, was that of essential tremor, an obviously incorrect evaluation. My tremor is severe and will affect my entire body if I attempt anything physical, such as lifting, shovelling, working around the house, etc. My hands and arms will begin to tremble with something as simple as replacing a ceiling light bulb

The medications that I have taken over the last ten/twelve years include:

- several Beta Blockers such as PROPRANOLOL / INDERAL - no results as these work primarily for essential tremor.
- PRIMIDONE - an anticonvulsant - no results
- BOTOX INJECTIONS taken directly into the legs every three months for a year and a half. Botox was to relax the muscles and nerves in my legs, but only made my legs very tired, especially when walking, therefore it was discontinued.
I have discovered that Botox is a rather controversial and rare treatment for OT in this part of the world at least. It is a deadly toxin, thus the dosage must be monitored very carefully. Botox, however, is in various stages of clinical development for neuromuscular treatments and muscle over-activity. For those of you who might be interested in learning more about Botox, here are a couple of web-sites.
http://www.botox.com/botox_info.html http://www.botox.com/prescribing_info.html http://www.botox.com/mech_action.html The above sites were given to me by my pharmacist. - SINEMET - used primarily for Parkinsons - no results - DIVALPROEX (valproic acid) - an anticonvulsant, but no results - BACLOFEN - a muscle - relaxant which acts on the nervous system. I had a violent reaction - all of the nasty side effects, and stopped immediately once these were experienced. - VITAMIN B12 injections - had several even though my B12 levels have always tested normal. No results as this was not a problem.
PRESENTLY AND INTERMITTENT WITH THE ABOVE: - GABAPENTIN / NEURONTIN - 3600mg. per day This seems to be the only medication that is helping at the moment. Because of the high dosage, I have been experiencing nausea, and have thus been prescribed METOCLOP (Metoclopramide). This is controlling my nausea, and apparently allowing me to eat proper meals, but it too has side-effects. Even at this level of Neurontin, I struggle to do very basic things, such as shave, pour a cup of coffee, etc. I do have "good moments", however. These seem to be few indeed. - CLONAZEPAM - 4mg.per day. I am just now in the process of reducing the dosage from 6mg.a day to hopefully NONE. This reduction is by 1/2 mg. every three weeks, so it is a long process. I have been on this particular drug , off and on, through ALL of the above. Although there may have been a very slight benefit at one time, Clonazepam is now serving mainly as a sedative. I have been sleeping both morning and afternoon for several hours at a stretch! This has been counter-productive and angers me greatly. Cutting back on the clonazepam is easing all aspects somewhat. The last THREE days have been the best in a very long time. Remember though, all things are relative! This past year has seen my legs become very painful and sore, so that even walking for exercise a short distance is difficult, and at times, impossible. An Advil several times a day has been my only relief from the pain, but this is more medication, of course. I have JUST COMPLETED another series of tests with my neurologist, who is considered to be the top doctor in Eastern Canada specializing in tremors. These tests have revealed an neuropathy (inflammation of nerves) in both legs. His feeling is that IF the cause of the neuropathy is discovered, it can be treated ( in most cases), thus relieving the pain, and thus soothing the tremor - certainly not curing it! But to lose the pain would be wonderful.
In the last few weeks I have had an EMG (electromyogram - nerve conduction study) which determined the neuropathy, extensive blood work, and a chest X-ray - all aimed at zeroing in on the cause of the neuropathy. I see my doctor in two weeks at which time, I understand, he will make some recommendations for further treatment. I shall keep you posted. Prior to these last tests, I have had an MRI and an EEG - both of which showed no irregularities. My life has changed dramatically. I am in perfect general health, love the outdoor life, puttering about in house and garden, and really want to productively enjoy my retirement. My wife and I are still young enough to contribute to the Community as well as do the things we always said we would. Because of OT and all the medications, my QUALITY of life has been reduced drastically. This angers, frustrates and upsets me. I feel as though I have been experimented on, BUT by the same token, with so little known about the causes and treatments of OT, I guess this is one of the ways, at present, that solutions can be found.
In response to the interesting letter from Michelle of France, I agree that the medical community is still "in the dark" as to this condition. Other Conditions have higher profiles, and maybe rightly so, as the numbers who are suffering are greater than ours. This, however, does not diminish our concerns. I do agree that we must exchange information and actively urge our doctors to seek solutions. I am thankful, nevertheless, that this Web-site has been so thoughfully and accurately created. I think we all appreciate the "author" of this Site. I will be very pleased to hear from anyone who has information, concerns, and similar problems with OT .
I do give permission to the 'originator' of THIS site to release my Email address to those who are seriously concerned with the problems of OT.

UPDATE April 26, 2001

I am now down to 1mg. clonazepam per day. I have been told to decrease by 1/2mg. bi-weekly, so I do have a bit of a way to go before I am free of this drug, which does not seem to help the tremors! I am continuing with 3600mg. Neurontin per day. With this dosage divided by three, by evening I now feel like a human being mentally, although my tremor is bad. Being over medicated is an awful situation, and I feel I have been over treated as such. I have also finished my fourth acupuncture treatment. The pain in my legs HAS GONE! The acupuncturist is a Medical Doctor, and a PH.D. She has taken my tremors on as a "challenge", but cannot guarantee anything in that regard. I have been having a difficult time "withdrawing" from my many medications over the years,but am now ready to correspond with any of you out there. Michelle, I shall write you very soon! Gloria, once again, THANK YOU for this web site and your continued support and concern.....

- Len, Nova Scotia, Canada
ABOUT THIS SITE:
The purpose of this site is to share information about Primary Orthostatic Tremor (OT). Since my diagnosis, my quest to learn more about this disorder has been frustrating and difficult to track. Hopefully, for all persons interested in this disorder, this website will become a coordinating link for collecting information, contacting other people with OT, and spreading awareness of this problem. Here you will find an active forum, my story / blog, and many other people that have shared their stories, advice and tips on coping with Orthostatic Tremor. If you have any information, suggestions, stories or services that you would like to share please email me.
This website is intended to be an informal guide. Any information relating to a therapy, treatment or diagnosis must be received with caution. Only a physician is authorized to confirm its validity. It must not, under any circumstances, delay or replace the advice of the treating physician. And is not a substitute for medical advice.

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