Primary Orthostatic Tremor, also known as Orthostatic Tremor (OT), is a neurological movement disorder, characterized by high frequency tremors of the legs when in a standing position, and an immediate sense of instability.

Because of the speed of the contractions (13-18 Hz)* you may not recognize the problem as a tremor as compared to the more common essential tremor (4-7 Hz) or Parkinsons (3-6Hz) which produces a very visible movement.

Currently considered a rare disorder however, we are greatly under diagnosed and often misdiagnosed as other neurological problems such as Parkinson's, MS, ET, etc. Cause and cure are unknown.

OT/POT is a complicated and difficult tremor disorder to understand. When we describe our symptoms to someone we generally do not complain of tremors as such because our main focus is on a sudden, unique, disabling event that happens to our legs when we attempt to do anything that requires us to remain in a standing position. What we feel in both legs simultaneously is extreme straining, unsteadiness and imbalance. The muscles in our legs become hard, our ankles feel weak and toes curl under as our legs fail to support us. We can stand for only a short period of time, in some cases only seconds. There is a feeling of panic to find a place to sit or the need to walk to relieve our symptoms. This OT profile is a repeating cycle that happens all through our day. OT is an entity that is life changing and unrelenting.

*Hz = oscillations or tremors per second

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 Web Site will become a coordinating link for collecting information, contacting other people with OT, and spreading awareness of this problem. 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, and is not a substitute for medical advice.

Thank you to all the contributors of this website, I know that it is very comforting for all of us to read these stories and to know that we are not alone in our journey. Each message increases our circle of friends and it may help to provide common pieces to the puzzle of this disease. There are two ways to include your story, you can leave it on the forum or you can e-mail me directly with your permission to print it on the Visitors Page., Gloria.

There are a variety of treatments that are used in attempts to control this disorder, and the most current can be found and discussed on the user forum and the visitors pages

Living with OT requires us to develop coping skills to compensate for the limitations of our disorder as we go through the day. The familiar home surroundings are easier to cope with because there are always places to lean against or conveniently placed chairs to sit on. Life in the public arena is filled with unfamiliar,challenging experiences sometimes provoking a sense of
embarrassment, for instance, stopping to talk with someone you meet casually on the street or an associate in the hall at work. Faced with this situation there is no time for a reasonable explanation for people to understand, consequently, our conversation becomes weak in concentration because of the anxiety over what is happening to our legs and all we are thinking about is the need to “ sit down now” !!!

In the work force sometimes OT can mean the need for adaptive changes, or in some cases, moving on to a new more accommodating career. Even happy social occasions can be stressful events because normal expected participation is impossible. Nonetheless, we work hard at being independent but should learn to ask for help if needed. We develop operational skills such as doing things at off hours to avoid waiting in lines at banks, post offices, etc. I no longer recommend the use of a cane because there is a tendency to walk slower with it and we need to walk at a faster pace so our OT’s do not kick in. No need to stop doing things, we must be inventive and just do things differently.

For more insight: throughout the web site you will find wonderful input from our OT friends sharing their experiences and coping skills “Living with OT”.

Click here to read more about my experience with OT

Thoughts, experiences and suggestions from visitors

The information and studies that are related to OT is extremely limited. Most of the available reports and studies throughout the world are a number of years old and generally involve a very small number of patients with very few follow up reports. The other problem is much of the information is repetitive. The symptoms of OT are now defined but the etiology is unknown. A test makes its' definition conclusive because the range of tremor of OT is such a high frequency that it is distinct from other tremors such as Parkinson's and Essential, etc. However, there are very few new cases reported, most doctors do not identify it because they are not aware of it. I hope awareness will prevent OT from being missed as a diagnosis because if it is identified the symptoms are treatable.

The OT survey is completely anonymous and it only takes a couple minutes to complete, so please take the time to share your experience. If you are curious about what questions are asked, simply view the survey results first.

contribute your experience to the new survey

view the survey results

Communication is the key to building our OT community. Read posts about handling everyday life, or strike up a conversation with another OT person. This is your forum, so please register and join in

Forum News: click here to visit forum

• the '08 meeting was a wonderful success, read about the it here
• if you are new to the website, welcome! and please register here
• if you have not yet added your location to your profile click here to find out why and how

* in the near future there will be portions of the forum that will be available only for registered members so join now.This is your forum, so please register and join in.

The way this site can make a difference is to participate. I would like to compare notes, thoughts and ideas about OT with you. The following are some of the many questions that you might be able to contribute to:

Is there currently any research being done?
Is anyone trying alternative treatments for OT?
Have any of the medications been successful for you?
Did your symptoms develop over time or quickly?
If you have OT is there anything in your history that you
suspect or feel might have contributed to your condition?

email me

1. The first thing you can do is to take care of yourself, both emotionally and physically. Exercise whenever possible.

2. Keep searching for answers (if you find any, email me)

3. Donate to support research towards the cause, treatment and cure of Orthostatic Tremor through NORD**

Click here to read more about the program and how to donate, let's work together to find a cure!

**The National Organization for Rare Disorders (NORD), a 501(c)3 organization, is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

News, Articles, Organizations and Resources -

If you have a published article and would like the OT Resource to link to it, please let us know.

Developing Unique Brain Maps To Assist Surgery And Research "Microscopic images inside the living brain will transform diagnosis and treatment of diseases such as multiple sclerosis, Parkinson's disease, Alzheimer's disease and Huntington's disease," A/Prof Egan said.

Is the spinal cord the generator of 16-Hz orthostatic tremor? This raises the possibility that the spinal cord could be the source of orthostatic tremor.

Link: An excellent 55 minute online video - "Orthostatic Tremor" Visiting Professor: Diego Torres-Russotto, MD Washington University in St. Louis, School of Medicine. Scroll down the page and look for the first listing under "November Grand Rounds". (this video requires that your computer have Real Media software - free version available - US versions: Mac / PC or UK versions)

Link: CONCLUSION: Analysis of power spectra from posturographic recordings is a simple, quick method to screen for primary orthostatic tremor. The condition might be more common than previously assumed. It is important to identify patients with primary orthostatic tremor because they might be misdiagnosed and left without treatment.

Presentation notes from the October 8th talk at the National Tremor Foundation by Dr. Peter Bain, Charing Cross Hospital, London

Gabapentin can improve postural stability and quality of life in primary orthostatic tremor. : Gabapentin may improve tremor, stability, and QOL in patients with OT, and symptomatic response correlated with a reduction in tremor amplitude and postural sway.

Four patients who developed orthostatic tremor after exposure to dopamine blocking drugs

We describe changes in the extent of sway in a man with orthostatic tremor (OT) who reported increased stability after alcohol.

We have reviewed these aspects in 41 OT patients fulfilling current diagnostic criteria, seen at our institution between 1986 and 2001.

The aim of this study was to determine if orthostatic tremor is invariably associated with the orthostatic and weight bearing conditions in the arms and legs, and to investigate the features of orthostatic tremor under different levels of peripheral loading.

[123I]-FP-CIT-SPECT demonstrates dopaminergic deficit in orthostatic tremor There is increasing evidence of a potential role of the dopaminergic system in orthostatic tremor (OT)

Quality of life in patients with orthostatic tremor :We conclude that OT strongly impacts on QoL (quality of life). The results highlight the importance of recognizing and treating depression in patients with OT.

Gabapentin in the treatment of tremor: 63 patients aged 59.4 years (SD, 16 years): 34 essential tremor, 16 Parkinson s disease tremor, 10 multiple sclerosis tremor, 4 writing tremor and 3 orthostatic tremor.

Technology Review has an interesting article about a bioengineer at Boston University that is using "noise" to enhance weak signals that are related to balance. This link is only for a preview to the article and a slide show.

Primary orthostatic tremor is an exaggeration of a physiological response to instability.Mov Disord 2003 Feb

Its prevalence accounts for around 4% for tremors explored in neurophysiology-Rev Med Interne 2002 Feb;23(2):193-7

Primary orthostatic tremor: slow harmonic component as responsible of instability The full report in spanish can be found here

The pathophysiology of tremor.-Orthostatic tremor is likely to originate in hitherto unidentified brainstem nuclei.

Orthostatic tremor arises from an oscillator in the posterior fossa. tested the hypotheses that orthostatic tremor is generated by a central oscillator and that the tremor is expressed through spinal Ib interneurons.

The main aim of this study was to see if the characteristic postural tremor in OT can be identified with force platforms. 2001 Feb;13 London UK

After he has stood for about a 30 seconds he developed a visible tremor of his quadriceps. a typical example of OT with a printout showing the tremor at 15hz

Gabapentin in orthostatic tremor: results of a double-blind crossover with placebo in four patients.

Effective treatment of orthostatic tremor with gabapentin. Mov Disord, 1998 Sep, 13:5, 829-31

http://archneur.ama-assn.org/issues/v57n10/abs/nob90044.html
Pramipexole Is a Possible Effective Treatment for Primary
Orthostatic Tremor (Shaky Leg Syndrome) Oct. 2000

"Primary" orthostatic tremor. 10 clinical electrophysiologic observations
observations of 3 men and 7 women, 37 to 74 years old with OT

A dissociation between subjective and objective unsteadiness in primary orthostatic tremor.
"standing under four conditions (eyes open or closed, feet together or apart) in six patients with OT. "

http://www.neuroland.com/move/tremor.htm
A nice overview of various tremors and their symptoms

http://www.postgradmed.com/issues/2000/07_00/cooper.htm
A more indepth look at the classification of tremors,

http://www.aafp.org/afp/990315ap/1565.html
Another good reference on classification of tremors

ORGANIZATIONS AND GROUPS

http://www.rarediseases.org/
The National Organization for Rare Disorders (NORD), a 501(c)3 organization, is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

http://rarediseases.info.nih.gov/
Office of Rare Diseases (ORD), National Institutes of Health
The goals of ORD are to stimulate and coordinate research on rare diseases and to support research to respond to the needs of patients who have any one of the more than 6,000 rare diseases known today.

http://www.disabilityresources.org/
Disability Resources, inc. is a nonprofit organization established to promote and improve awareness, availability and accessibility of information that can help people with disabilities live, learn, love, work and play independently.

http://www.tremor.org.uk
The National Tremor Foundation- British foundation for sufferers of all types of tremor

http://www.essentialtremor.org
website of the International Tremor Foundation

http://wemove.org
organization for movement disorders, info on related disorders

USA -Social Security - Information on disability benefits

Tremor Action Network : National non-profit dedicated to increasing awareness of essential tremor by advocating for a cure through research. Offers support for patients, family members, and caregivers through a quarterly newsletter, videos, and guidance from advocates.

MEDICAL SEARCH ENGINES

http://www.queryserver.com/health.htm
searchs several medical databases

http://clinicaltrials.gov/
provides patients, family members and members of the public current information about clinical research studies

http://www4.ncbi.nlm.nih.gov/PubMed/
search the National Library of Medicine

Medical Dictionaries
a list of online medical dictionaries

http://medscape.com
search articles and medicines

SCIRUS-Search Engine for Scientific Information only

http://www.dogpile.com
not specific to medical information but a very good metasearch engine, which searches several search engines at once.

TIP FOR SEARCHING THE WEB- when you are searching for information on OT, make sure that you put the words orthostatic and tremor in quotes like this "orthostatic tremor". This will force the search engines to search for the phrase "orthostatic tremor" only when the words are together. Otherwise, you will get results for websites where the two words exist but not necessarily together. Please email me if you find any websites that you feel would be helpful, and if you find that any of the of the above links are broken.

Do you have any suggestions, comments,
or something you would like to add to this site?

http://www.orthostatictremor.org/
email me

copyright 2008

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