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 There are very few events in our day that aren’t touched by OT, below are a few examples, please visit the forum to read more or contribute your own thoughts and experiences. 

Exercise: A comprehensive exercise program is essential if we are to maintain/maximize on the mobility issues which enables us to continue to be able to independently shop, travel, cook and other day to day tasks. A program could include core strength training, flexibility and balance exercises. A warning: We produce adrenalin when exercising and adrenalin increases our tremors. A brief rest period usually brings the tremors under control and should not deter us from participating. Increase of adrenaline also occurs when you are stressed, temperature change, tired etc. 

Walking: A regular walking program of 30 minutes/day is the best single activity for maintaining mobility*  This recommendation is commonly accepted for prevention and maintenance among all adults and most OT sufferers can enjoy walking at a moderate to brisk pace for a period of time. However we all seem to experience difficulties when trying to walk slowly, as in visiting an art gallery or walking at a snail’s pace in an airport line up. Many of us in these situations begin to feel exhausted, agitated and in a state of off balance ( mentally and physically). Further when faced with an obstacle such as another person moving towards us or worse as in the mall, a group of persons, we then tend to dither / panic and feel most insecure, again it is both mental and physical. Another difficulty  is presented in the ‘transition’ period as we move into a full walking motion. Simply moving from a seated position into walking motion causes us to hesitate and physically ‘stammer’!  Moving from swimming in a lake to fully standing is overwhelming without some type of support. Changing from kneeling or sitting on the floor to standing and moving is anxiety provoking and produces unsteadiness. We must conclude that our tremors worsen in transition situations. However we should not let these short awkward periods keep us from engaging in those activities that will keep us fit and functioning…..30 minutes a day of walking!! Dr Russoto, a neurologist who is very interested in our disease wrote, “ Anyone who has unresolved gait problems should test for OT as it is a simple test that can prove conclusively that they have OT.” He acknowledges that we have gait problems.

* link to more information about walking and gait related issues

Shopping and Activity: as with many events, planning and familiarity with the environment is good. What has probably become second nature to the seasoned OT’r is to scan the room or location for chairs, or benches. And as in many situations, ask for help, it doesn’t require a thorough description of OT, just a polite - “ I can’t stand for very long, would you mind....... “.   If you are shopping with someone and you find that the crowds, lines and cluttered areas are overwhelming or you have over exerted yourself for the day, ask someone if a wheelchair is available ( usually in large malls ), or if you find yourself in this situation and you can’t move, find a place to sit, and wait until the crowd lessens and you have relaxed. The key is to find ways and tools that you can use to maintain your lifestyle and not to avoid the activity. We must be inventive and just do things differently.

Travel : similar to shopping, it’s important to ask for help. If you are traveling by Air, call ahead or online and request a wheelchair and special seating. This is true of many situations, ask for help and you will most likely be pleasantly surprised. Also, print out the travel tag which is available from the link below, the presence of the universal handicap is very helpful and easily identifiable.

Link to OT Travel Card

Join the forum : this may be the best thing that you can do to improve living with OT, discuss your experiences, compare notes, and make friends that truly understand. 

Click here to read more about my experience with OT - Updated September '09

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.

This disorder was named "Orthostatic Tremor" in 1984 when Kenneth M. Heilman, MD was published in August 1984 in the Archives of Neurology. Read more about this in our interview by clicking on this LINK.

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 2009

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