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Orthostatic Tremor

Orthostatic Tremor

Information, News, Research, and Discussion

The History of Orthostatic Tremor

In 1970 Professor Elio Lugaresi described patients with high frequency tremor while standing and no tremor at rest. Based upon evaluating 3 patients with an “unusual disorder of erect standing position” featuring tremor of the legs, which started with a short latency when they stood." The team of Pazzaglia et al. concluded that they had found a condition that was "potentially associated with an inappropriate postural response".This information is from a new historical report by Roberto Erro RE, MD, Elena Antelmi EA, MD and Kailash P. Bhatia KPB, MD, FRCP researched the following article originally published in 1970.

Pazzaglia P, Sabattini L, Lugaresi E. [On an unusual disorder of erect standing position (observation of 3 cases)]. Riv Sper Freniatr Med Leg Alien Ment 1970;94:450–457

"The earliest account of orthostatic tremor (OT) dates back to 1970, when Pazzaglia and colleagues reported on three patients with a peculiar disorder only occurring on standing. Although Pazzaglia et al. did not use the term OT, they first provided both the clinical and neurophysiological features of such a condition." This article was researched and written by: Roberto Erro RE, MD, Elena Antelmi EA, MD and Kailash P. Bhatia KPB, MD, FRCP Link to article

There is some discussion as to when OT was actually discovered, but one thing we do know is when it was named “Orthostatic Tremor”. The name of our disorder has a very recent history, and only dates back to the 1980's, when Kenneth M. Heilman, MD was published in August 1984 in the Archives of Neurology.

In 2009 Dr Heilman was very gracious to answer several questions and allow us to include the answers on our website. We are grateful to Dr. Heilman for taking the time to shed some light on the event in 1984 when he recognized our disorder as a different entity and gave us the name Orthostatic Tremor.

August 2009, Q&A with Dr Kenneth M. Hellman

Q. Discoveries always seem to have interesting origins, and often not what was set out to find. What were the circumstances that lead up to the idea that Orthostatic Tremor may not fall under the same category as the already recognized tremor disorders? Was there a single moment when you thought that this may be different?

A. When I saw my first patient with this disorder and heard his complaint, I realized even before examining him that I had never heard or read of any patient who had this type of complaint. I had no question about this patient's sincerity. My examination confirmed my initial impression. I thought that this set of signs and symptoms is so unusual that someone must have previously reported this syndrome and hence I checked the past literature but could find no reports. I thought that perhaps other experts in movement disorders have either read about this syndrome or have seen patients with this disorder so I wrote to one of the worlds experts, and asked others. None of these experts had either read about such a disorder or had seen a patient with such a disorder. Within a few weeks of seeing this first patient I saw two others with the same symptoms and signs. I, therefore, decided to write up these cases and submit an article to the Archives of Neurology. The editorial board did accept it for publication and it was published (Arch Neurol. 1984 Aug;41(8):880-1).

Q. It’s been 25 years since your discovery have you revisited any of your thoughts or ideas about Orthostatic Tremor and have there been any changes from the original description? Are there any patients that you have followed over the intervening years? How have they fared ?

A. Some people have suggested that this orthostatic tremor was a form of essential tremor and their continues to be debate about this. However Thompson et al 1986, measuring electrical potentials from the muscle (EMG) demonstrated that the tremor occurs about 16 times per second and no tremor at this high frequency has ever been previously reported. In addition as we reported in our original paper, patients do respond to clonazepam and not to beta blockers such as propranolol. In contrast, essential tremor usually responds to propanolol. In addition to clonazapam some investigators have found that gabapentin seems to also work for some patients and some patients also were helped by primidone. I have not followed any of the original patients for 25 years.

Q. Do you think there are many misdiagnosed people who actually have OT? What is OT usually misdiagnosed as?

A. Yes, I do think there are people who are misdiagnosed...usually as essential tremor. After the initial report several people wrote to me to tell me they were unfortunately initially diagnosed as having a psychiatric disorder.

Q. Do you think OT is a new disease? And if so, do you think its causes are environmental? Or do you think it’s been around for a long time but too rare to attract attention until recently?

A. I do not know if it is new disease or just unusual.

Q. Do you have any thoughts or hopes about what we may see in the future in regards to Orthostatic Tremor and it’s treatment?

A. I also do not know what the future holds. However, unlike human relations, medicine has made tremendous progress and hopefully, a cure will also be found for this disorder.


and in conclusion Dr Heilman sent the following:

Finally, thanks for all your work on behalf of the people who suffer with this disorder.

Kenneth M. Heilman M.D.
The James E. Rooks Jr. Distinguished Professor Department of Neurology University of Florida College of Medicine Gainesville, Florida 32610
many, many thanks to Dr Heilman.

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 website will become a coordinating link for collecting information, contacting other people with OT, and spreading awareness of this problem. Here you will find an active forum, my story / blog, and many other people that have shared their stories, advice and tips on coping with Orthostatic Tremor. 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. Any information relating to a therapy, treatment or diagnosis must be received with caution. Only a physician is authorized to confirm its validity. It must not, under any circumstances, delay or replace the advice of the treating physician. And is not a substitute for medical advice.

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