This is the "main" forum that contains new introductions and other topics. A place to talk about your experiences, thoughts and advice.

Moderator: gloria

By Betty
Hello Hester,
My name is Betty and I live in Melbourne, FL.
I have had OT for twenty-five years and it took me almost ten years to find out what I have. I saw nine neurologists and none had any answers for me except I should see a psychiatrist, which I did. He told me I didn't need a psychiatrist, which I knew, I just needed someone with knowledge of OT.
I saw Dr. Seth Pullman at Columbia Medical Center in NYC. He did several tests on me and diagnosed me immediately. I was thrilled to finally have a name for what I have.
I tried numerous medications, and I, too, am sensitive to almost everything, but finally found I could take Klonopin. I only take 1/2 in the a.m. and 1/2 in the p.m. Same dosage as you. I do feel I could/should be taking more, but haven't a neurologist at this time and won't increase the dosage on my own. If you feel you should increase your Klonopin, consult with your neurologist. He or she will be your best advisor.
The symptoms you described are the same as most of us have. I am so pleased you found some relief from your tremors with Klonopin, I hope that continues ~ we are all different.
You said you have some good days and some 'not so good' days. I think that is something we all experience, at least at first. As time goes on, you may find your tremors will become more frequent; that seems to be the progression for most of us.
Weakness and fatigue are also something we all experience, at least I do. When you feel fatigued, or tired, listen to your body, give it a rest. I do have pain in my legs and feet when I have tried to do too much. That's when I rest.
As for navigating the forum, you should check with the Administrator; he will be able to answer ALL of your questions. He is in charge of this website, worked out the format and keeps things in order and running smoothly. He is wonderful.....
Hope I have helped a little; stay strong and continue to read posts.
Betty in FL
Hello, my name is Theresa and I was diagnosed with OT about 10 to 15 years. As you all know it is a very difficult disease . I can't go with out my walker.
Thank you for listening to me. I look forward to hearing about all the OT have this brutal disease.
Thank you so much, Betty. You were very helpful and supportive.
My doctor has left it up to me to experiement with Klonopin but not raising dosage without seeing him. So I am going to try and split the 2 pills throughout the day and see if that makes a difference. I'lve read that others have done that.
In the meantime, I will just try to adjust to a new lifestyle. It's just that I do so much and don't know how to stop! I have almost an acre of gardens that require daily attention, I do all home repairs and chores like pressure washing, cleaning gutters, painting, etc. It's what I enjoy and I'm having trouble dealing with the fact that I may not be able to do everything . I have, however, stopped going up on the roof!
I'll figure out how this forum works and check with the admin...
thanks again
Welcome. It's not just the constant tremor on standing, it's as you noted, the change in lifestyle. In the past I never stopped moving, working full time as an RN, accomplishing endless tasks, errands, hiking, bicycling, etc., etc. My mother used to ask me: "don't you ever relax?" Now it's constant movement of the legs, arms, and hands on standing (and the constant fatigue). Everything I do seems to be in slow motion. Taking a shower is like a workout at the gym. No medication helps even for a moment. It's discouraging, but I consider it a challenge. When I enter a restaurant and ask for a seating arrangement where I can place my rollator out of patrons' way, I hear: "We'll put it up back"; or - "we'll put in the fire exit" (!!!! brainless!!!), or, as I heard yesterday, "We'll put in in the closet." I have to say gently but firmly, no thank you. It stays with me. I thank God for my husband who is a great help. Good luck to you. We're part of a sophisticated, albeit not desirable, group. Maybe one day soon someone will find, if not a cure, at least a viable treatment.
By Comma
Hi, there have been a number of posts in this thread mentioning the Melbourne Conference (held last week) and the associated web site(s).
We now have a permanent website at and amongst other things, the presentation materials from the 2013 and 2019 Conferences are there. The videos of the presenter sessions from the 2019 Conference are not back from the post-production house yet, but I expect links to them to appear on the website as soon as the content has been uploaded.
Hope this helps.
Cheers, Colleen.
By Jolanda
Hi everyone,

My name is Jolanda, living in The Netherlands. I've seen a neurologist because of increasing tremors while standing. I've been diagnosed with OT, but the neurologist isn't very familiar with this condition. That's why he has referred me to another neurologist, I'm waiting for an appointment now.
I haven't had an EMG yet. So the diagnosis stil has to be confirmed. I see a 100% match if a read the symptoms though.

I hope to learn more about the condition, the symptoms, the treatment and about coping mechanisms by reading the posts on this forum. I'll keep you posted about my appointment with this new neurologist and what he/she has got to say about my tremors.

OT-diagnosis has been confirmed after an EMG bij my second neurologist at may 24th 2019.

With love, Jolanda
Last edited by Jolanda on Sun May 26, 2019 10:07 am, edited 2 times in total.
By admin
It was a big news day for OT!

The NORD Orthostatic Tremor Research Grant has sent out a request for proposals. The grant is for $42,500 and the deadline for the application is June 18, 2019. Read more here: viewtopic.php?f=83&t=977

And, the OT Survey Team and created it's second survey "Symptoms and Diagnosis". This survey is now open for participation until May 24th. So please take the survey as soon as possible. Read more here: viewtopic.php?f=98&t=976#p6218
I have tried to join this forum a few years ago, but I didn’t, and still don’t, understand how to navigate your system. I’m giving another try here.
My name is Joy Michele and I have been diagnosed with OT last September 2018. But I had diagnosed myself for years before, but no one would listen to me until I finally got referred to UCDavis Medical Center in California. The doctors there listened to me and it was so wonderful that someone finally understood! I’m 67 years old now and have had this for about 15 years. I did your survey #2 today. I’m not on Facebook, but maybe thinking I should just because I’m all alone with this. Would like to talk to someone who actually has it.
So that’s my quick story. I’ll see if I wrote this in the right place this time.
Joy Michele
By drlorimom
I signed up for this forum a couple years ago, but don't think I posted anything at that time. Finding this website was very reassuring...realizing that there are other people out there with this dreadful disease, as I haven't met anyone else yet. My experience started in ~1995 and (being a physician myself), I found the symptoms to be rather crazy and illogical (being able to run, ride a bike, play tennis, etc...but not stand!?!). But I knew they were real! My family doc, a neurologist and an internist were equally unable to offer a reasonable I just lived with it and did what I could to cope & hide it from people. Finally I self-diagnosed using info found online; and eventually found Dr. Diego Torres-Russotto at U of NE, and he made the definitive diagnosis. It oddly felt good to have an official label.

Now, I think perhaps my sister has OT, as well. She is experiencing resistance from her neurologist, who (based on what she tells me) is not familiar enough with the disease and has been dismissive. I am wondering a couple of things:
1) Has anyone seen a neurologist in the Scranton, PA area, where my sister resides, who might be more receptive to considering OT as a possible diagnosis for her? Her neurologist said that "the primary symptom of OT is obvious trembling of the legs immediately upon standing" which I know not to be true. So discouraging for her!
2) Is there a way to get in touch with other OT patients in my area? In other words, is there a means on this website for us to easily identify people who are nearby (rather than search through 6,000-plus posts)? I live in Cedar Rapids, Iowa in the USA.

PS-Before submitting this post, I read several other peoples' posts. Gee, such a nice group of people! I want to meet everyone! :)
By Susie
Hi Dr Lorimom,
I have to say it's heartbreaking to hear of people going for years with this OT thing, either undiagnosed or misunderstood by health professionals, and for you, a Doctor yourself, it must have been so terribly frustrating. But so pleased you found Dr Diego Torres-Russotto, he may not have told you but (I believe) he is the leading expert in OT and OT research in the USA. I am in Melbourne, Australia and last month we had our second Australian OT conference in Melbourne, it was fantastic, and Diego made a video presentation for us on OT and the latest research he is undertaking. But most of all the overwhelming value of just meeting others with OT, the instant bond and camaraderie was incredible. For those few days I didn't have to explain myself, or like you said hide anything, for once I could be normal. It was wonderful.
We do have a Facebook page that brought us all together, not sure if you are on FB, hopefully your sister may be, it was founded in Australia but there are members all over the world and lots in the USA. There is a document that lists what countries/cities/towns everyone lives in which may help to find someone near her, or just get on there and ask! We are a friendly and helpful bunch and you will get an instant reply! Just search for "Primary Orthostatic Tremor" or here is a link:
And if you would like to see Diego's video presentation from the conference or any other info from it here is a link to the website:
Colleen did mention this a few posts back, everything is uploaded now.
And I did ask Gloria, this site's Admin, how I could search for members by location (i.e. Australia) but the information of location isn't captured for everyone, each member has to update their profile with that sort of info and most haven't so I ended up with a very short list!
Good luck with everything,
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