how to view the latest posts, registering problems, change the type size.... etc.

Adding your general location may be helpful when researchers plan future studies. Because OT is a rare disease it is important to get a geographic picture of where everyone is located. Support groups may start up if they see that there are enough people in a certain region. And even if we see that someone is on the other side of the world we know that we have a connection.

You general location is all that is needed, and it is not recommended to post specific addresses.

You can change many of the settings associated with your profile and login information such as:

Email address
Location (although for privacy you should only included general details such as a county, town or region)

1. First step is to login with your current Username and Password.

2. Then click on PROFILE in the upper right of the page:


3. Then click on the Profile tab, just under the heading User Control Panel:


4. Click on the "Edit profile" and the "Edit account settings" and look for the fields containing the information that you would like to change:


5. Make sure that you click on "Submit" after making the changes:

Hi! bigfish: Sorry but you need to click on "link" to take you back to where you can find your profile and there you can enter your location. It is a little confusing but keep on trying. I know you know how important it is to post your location and we thank you. Gloria
Dear Eleanor, Bigfish and DataGirl and all: Please scroll back up to the top of this page for the instructions on how to go to your profile page to enter you location. Just leaving it on this page will not put it on the membership list because only you have access to your profile so no one can do it for you. It is important that everyone give their location so please follow the instructions above. Thank you, Gloria
I am a new member to the forum. The first doctor that I saw was to do deep brain stimulation, so I changed to the University of Colorado which is quite far from my house. The person I was assigned to had never seen orthostatic tremor and did not send for my previous records. They tried almost every drug they had and started me on Keppra. I have been told this never helped so it has frustrated me to try many drugs that did not work. Klonipin has helped a little but I am very much aware that the disease is advancing. I have generalized symptons. I take 1 mg of Klonipin 3 times a day and it makes me very tired. I also have word finding problems. I am confused about exercise because it makes me worse and it can continue for several days even though I read that epinepherine disappeared after 20 minutes of rest. I think not exercising more increases the weakness. I have started to get hammer toes from digging my toes in to get my balance. I have been to Mayo's in Phoenix and there is no one else in Denver besides the doctor who wanted to do deep brain surgery and the medical center. So I feel very much that I am experimented on. I contributed to our fund but I don't think anyone thinks we have near enough money yet for separate research. I have tried to stay as active as I can and belong to Rotary and church activities. I have a stool to sit on, a walker, or a pink wheelchair that someone has to push. I am a retired Pediatrician. Thank you for allowing me to join the forum. Barbara Chase
Hi! Barbara and all:
Welcome Barbara to the Forum, so happy to see that you registered and introduced yourself to all your new OT friends. I have a few questions, how long have you had your OT symptoms and was that the reason that you had to retire as a Pediatrician? As far as exercising is concerned the more you read the input from most OT friends you will find that the people who keep as mobile as possible do exercise in moderation. Stretching and walking are the most helpful. Also deep breathing is a must, it helps to calm us and that is something we all need in order to fight this stressful cycle that we go through all day long. A good physical therapist can help with this. I do daily walking and take chair/moderate yoga and I find it very gentle but very good maintenance. Maintenance is the only thing we can do, there is nothing that will change our problem but we cannot let it control us, we must learn to work around it. Do you have any thoughts about anything that happened in your life that might have caused the onset of OT ? I wish everyone would go back in their history and report their thoughts on this as well.

As always , Gloria
I live near London, Ontario, Canada.
I started having symptoms in 1992 just before I turned 50.
As I recall, I was healthy at the time. I was fairly active and had just run a 10K race a few weeks
before. I saw two different neurologist over the next several years and had several MRI & nerve
tests but nothing came of it.
My symptoms have gradually gotten worse over the past few years.
I was diagnosed with OT at the Movement Disorder Clinic at University Hospital in London, Ontario
just a few weeks ago.
As far a exercise goes: I use a stationary bike a few times a week and do some weights (sitting down, of course!). Walking is difficult because I have osteoarthritis in one hip which causes me some pain.
Mary Louise & all who have not posted their Location in their Profile:

Please scroll back up to the top of this page and you will see 1,2, & 3 steps on how to post your location as a registered member. You are the only one who is able to post on your profile page so it will show on the registered member page. Posting it here or when you write a post on the Forum it will not register it in you profile. Hope this will help, Gloria
By Bustarzan
I will not bore you with all the situations, diagnosis', the long time it took to find out what was wrong with me, etc. Most of you have been there, done that. Nothing really new. I do however want you to know it is not a disease, it is a condition. Also, please see a MOVEMENT DISORDER SPECIALEST, as they know about this where the average neuro specialist has probably never seen a patient with orthostatic tremor.

I have read several things in this forum that talks about the Medtronic Deep Brain being used for OT. Some with success and some with no success.

I would like to hear from any of you that have had this surgery for this condition, be it good or bad.

I look forward to hearing from you very much!


Beverly McCarter, Thomasville, NC
Hi Gloria:
Sorry I didn't leave a profile. I am 68 years old and live in Merritt island Florida. I finally found a neurologist who knew exactly what I have OT. I have had it for 3 years and it is getting worse this neurologist was just great and told me to get on your site that it would help. I have read a lot of post and it is just great in helping me see what others are doing.
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