The Orthostatic Tremor Forum (archive)

You are all so kind and thoughtful. I appreciate your replies very much. I want to work and would go nuts if I couldn't! I was just so afraid when I heard the diagnosis. Now, I feel a bit reasured. I have started on Klonopin and I'll see if it helps.

Warmest regards,
Louise

To Louise I just read your posting of the 21 sept 04. I think the answer to your question is very individual and one answer does not cover all of us who have OT.
Do you work out of necessity or interest? Have you got a strong support system (eg.family, friends, disability insurance}? How much does the tremor affect the kind of work you do? How bad is the tremor? Is it progressing or have you plateaued? If you find other employment will it cover your present living costs? Can you scale down your present standard of living? (go to smaller house etc.)
As you can see I am very practical and eventhough this may seem a lot to think about once you make a decision the fear will go. I am lucky to have this website to write to as I really write how I feel (you should see my postings they seem such downers compared to other contributors) but, that is because in my daily life I CANNOT show my anxiety and worries as there are still others reliant on me and so they see my SUNNY side.
I dont feel it is necessary to show false optimisim when i am writing here. Sure, look on the positive side but look at the negatives in order to solve them as if you ignore them they will come back and bite you.
Well thats it and as they say down here. No worries mate!

Your posting to Louise shows a realistic approach to life that is wise for all to use. We have OT and it is a hard challenge and life changing but by discussing it and being open about our feelings will help promote better understanding, God knows we need it. Keep up the good work! Gloria

Dear Gloria,
Thanks for answering my last posting. I was a bit concerned I sounded too negative. Somehow this OT has knocked my self esteem a little but am trying to work through this. Have to remember I am a person with OT not an OT person if you get what I mean. Its rather late here and I am up waiting for my daughter and partner who have driven all the way from Perth which is 3,800 kms to be with some of us for the holidays . Eventhough we do not celebrate christmas personally we have a good time at this time of year as it is summer and we eat seafood salads and lamb outdoors. Three of my five children and their partners can make it this year. We are so lucky to live here as some of my family had to cancel their trip to Indonesia because of a travel warning. I hope you all on the website are enjoying a happy peaceful time. Love to you all

Merry Christmas everyone and keep smiling in 2005. This is my first time on the forum and am feeling a bit down right now. My tremors seemed to have increased lately which I find annoying. Probably because I have stopped Gapentin which I was taking for a damaged nerve in my back and leg. That has improved- thank goodnes. I also wonder if the stress of the season doesn't help. I am able to work -standing for 8 hours a day in a packing house- but do experience severe leg pain at times. I am able to lean most of the time and have great support from most people. I am not ready to retire just yet! Will write more later
Chris

Dear Chris: If you feel you have increased tremors since you have stopped using Gabapentin perhaps you should ask your doctor about using it again. There are many of us that are using it for our OT. I have a question "you say that you are standing for 8 hours a day/w leaning", however are you not in a " still" position but rather moving your body while standing as well? Interesting, Gloria

Dear Gloria! Happy New Year! Thanks for responding. I will ask my doctor about Gabapentin next time I see him. Had a great short holiday in Calgary, Alberta seeing some of my family (very cold -27C) My OT seemed worse at times probably because I was quite tired and did drink and party a bit. But, we all have to have some fun sometimes and I coped. In regards to my work in the fruit packing house I am able to move around and walk a bit while I am on the packing line and when I have to stand still and use my upper body I am able to lean on something about waist height. This really helps me to handle my job. I cannot do anything that requires me to stand still and use my upper body and not be able to lean or hold on. I get very shaky very quickly. All in all my legs are very sore at the end of the day. When I am able to sit for longer periods I feel a lot better.
Thanks for listening.
Chris

Dear
It was really nice to hear from you. I do find my job very tiring but hopefully this is the last year I will have to work there. We are seasonal so are usually laid for a few months towards the end of May and I am hoping to take early retirement in September if all goes well. My husband had been retired for almost 3 years now but does a lot of contract work so is still fairly busy. We have been doing a lot of expensive house projects the last few years so that is mainly why I work. I really like the job and have been there for 15 years. It is only a five minute walk from my house. We live in a very small town and all the call centres are in a bigger centre nearby. That does not really appeal to me - mainly because the pay is pretty terrible compared to what I make packing fruit. I am managing so far but today after going back after the holidays by noon I was almost ready to pack it in. I may be lucky and not have such severe tremors as some people. I have slowly been getting worse over the last few years. Hopefully I can hang on for a while longer. Keep in touch. We hope to travel when I retire and enjoy more time with our grandchildren.
Happy New Year
Chris

Dear Chris,
How do you do it? I got a job at a call centre but as part of the orientation had to do 3 days in the warehouse so we could see what we sold (medical supplies). It was gruelling to keep upright and I only just managed to do it. I had to show them I was capable because the fellow who hired me noticed the tremor when he took me for the tour of the workplace and we stood still for what seemed like hours (probably 2 minutes).
I think your wonderful to do that job. no wonder your legs are sore after that effort all day. I know how it is with getting work but could you not work at something like a call centre because its ideal to sit and very little standing still (maybe at the tea break!)
I worked for a company that did not sell on the phone just took orders for the goods that hospitals and doctors wanted though of course, we tried to sell them some u-beaut new product too. I wish we had call centre here but in the country they dont. That is one of the things on my to do list- like move back to Sydney.
My legs ache when I teach and I can only manage casual as I need days in between to recover. I dont know how you do it.
The call centre training is good and it is a low stress job and the computer skills are only data entry which took maybe a week to grasp. I know you probably like the people and workplace where you are but it would be easier on you if you could work somewhere like that.
I really admire you doing that work 8 hours a day leaning as you do. Would be great to win the Lottery and travel and have some fun. You can see I dont work because I want to!
Best wishes

I have been reviewing this forum today and noticed these articles about upper body tremors. I was diagnosed with OT 4 years ago but have had tremors about 14 years.I also have upper body tremors and have been told it is essential tremors since I have a brother and son with the same condition. When I saw my neurologist lately he noticed that when I lean forward that the tremors go into my arms. What ever that means. I am going back to have more tests at Mayo so I will talk to Dr. Matsomoto about "all over" tremors.
Happy New Year to all.
Lorie M

Hi Lorie,

I definitely have upper body tremors that include my arms, hands, jaw, eyelids. My neurologist (Yale) told me that he did not think they indicated a separate condition but were "related" to the OT. All of the upper body tremors worsen when I am standing. But some (esp. jaw, eyelids) occur even when seated or lying down and are more like essential tremors. The jaw tremor feels like the muscles in my mouth are still working after I am done chewing something and the eyelids pop all over when I close my eyes. Makes for an interesting time getting to sleep. My hands often hardly work at all when I've been standing for a while. My fingers become completely uncoordinated.

I would be interested to hear what Dr. Matsumoto says about these "related" essential tremors.

Amy

diag082504 wrote:Hi,
Just wanted to post again and let you all know that I asked my neurologist about OT's and told him that from what I've read, the tremors only affect the legs and not the head, shoulders and arms like I am having (along with the lower body). He told me that I shouldn't believe everything I read on the internet and that OT's can also affect the upper body. He was pretty blunt about it and seemed PO'd that I was questioning his "expertise". Aarrgghh. Anyone else get tremors in the upper body?
Theresa

Theresa,
Here is one fellow POTer affected by arm tremors. But they only come when they are asked to bear weight. If I lean on a low counter top and use one of my arms (or both) to support some of my weight, the arm carrying the most weight load will begin to tremble. This is my theory why so many of us with POT will say that using a cane does not do any good.

In fact, in some ways, using a cane as a weight dependent device actually has the effect of making the problem worse because now I have three appendages shaking and moving.

I mean, hello ... If the appendage holding the cane is oscillating, guess what the cane (which has no compensating muscles of its own) is going to do? Right - it's going to shake too.

But, putting the cane aside, it is interesting to experiment by increasing the angle between one's vertical (standing) body and the arm you are using to bear part of the weight. The more the arm is angled down, the more it shakes as weight is applied to it. The more the arm is extended out to the side closer to 90° to the body, and the less weight it is asked to bear, the more the shaking disappears. Then finally, if all you are asking the arm to do is provide a steadying influence by lightly touching the wall, the tremors in the arm disappear. This is pattern that is clearly different from of ET (essential tremors).

So are tremors in the upper body part of POT? You bet they are, when weight is being supported.

Rich
(continuing to observe his body and how it acts in an effort to discover how this vehicle housing his spirit is malfunctioning and why)

Theresa,
I was told years ago that I had essential tremor of the upper body. Years after when OT appeared it was said I did have ET along with OT. When I had the extensive testing this spring at Mayo, Dr said the upper shaking was indeed OT. I believe with each individual it may be different at different times. Since OT is uncommon it is not surprising that the doctors do not have all the answers. Rich described it accurately for me and it did show up when Dr. Matsumoto did the extensive motion testing for me in Feb. with his research study.
Best of luck to you!
Lorie M

Theresa, how are you doing now.

About upper body tremors, Rich and others have already described this well, but with OT any weight bearing limb can have tremors, so that leaning on the arms on a counter for example will produce tremors.

I also find that sitting without a back support to disperse the body weight is also a problem.
Am not sure if this is directly only related to OT but the sense of balance while sitting with no back support can get uncomfortable.

Otherwise, sitting and lying down are absolutely the most comfortable positions to be in with no OT symptoms.

Lily