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Orthostatic Tremor

Orthostatic Tremor

Information, News, Research, and Discussion

Many thanks to the doctors, researchers, journalists, caregivers and volunteers that help to uncover the mysteries of this disorder and to care for those with OT.
Be kind, for everyone you meet is fighting a hard battle.
Ian Watson
For more information read this article on OT - Dr Torres-Russotto, University of Nebraska Medical Center.
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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. ( medical disclaimer , website disclaimer )
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what is Orthostatic Tremor ?

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

OT is a very fast so 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. The cause and cure of OT is unknown. Orthostatic tremor was previously referred to as Shaky Leg Syndrome.
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OT symptoms?

When we describe our symptoms, 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, fatigue, unsteadiness and a fear of falling. 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 if possible, walk to gain some relief of our symptoms.

Other areas of the body, such as trunk and arms may also be effected. This OT profile is a repeating cycle that happens all through our day. OT is an entity that is life changing and unrelenting.
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OT diagnosis?

Looking for a Movement Disorder Center?

Thanks to the Parkinsons Disease Foundation there is a helpful resource that lists Movement Disorder Centers by state or province in the US and Canada.

It's not a guarantee that you will find someone that is a specialist in OT, but it's a good start, along with asking your primary care physician, and seeking referrals from other people with OT.

visit the PDF Movement Disorder Center search page

According to many research studies - If someone has difficulty standing but can walk, consider Orthostatic Tremor and a Electromyograph (EMG) is the best way to confirm or rule out the diagnosis. read more

For the majority of people that have OT, the tremor is a very unique identifier. One term used with tremors is Hertz or often abbreviated as Hz. This indicates the frequency or “how many per second”. Compared to the more common essential tremor (4-7 Hz) or Parkinsons (3-6Hz) which produces a very visible movement, the OT tremor is quite fast, usually falls within a range of 13 to 18Hz. As a result of this speed it doesn’t often appear as a tremor. Imagine tapping your finger 18 times a second. A tremor that doesn’t look like a tremor often leads to misdiagnosis.

“in patients with instability when trying to remain standing, we should suspect that orthostatic tremor may be involved, and an innocuous electromyographic study may lead us to confirm or rule out this diagnosis.”

Importance of electromyography studies in the diagnosis of orthostatic tremor
S. Yagüe *, M. Veciana, J. Pedro, J. Campdelacreu, Servicio de Neurología, Hospital Universitario de Bellvitge Príncipes de España, Hospitalet de Llobregat, Barcelona, Spain

But what if you don’t have an expensive EMG machine - but you do have a smartphone. There are several Apps (and some are free) that run on cellphones that may be helpful determining the frequency of a tremor which could potentially be a tool to help with diagnosing OT.

Smartphone Apps, accurate Bedside Screening Tool for Orthostatic Tremor
Danish Bhatti, Rebecca Thompson1, Amy Hellman, Cindy Penke, John Bertoni and Diego Torres-Russotto


read, and discuss Tremor Apps on the OT forum

The “helicopter sign” is a term used for the sound that can be heard with the use of a stethoscope placed over the thigh or calf.
read more here

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OT and walking…

Why is standing a problem, but walking can offer partial relief for some people?

According to recent research at the Neurology Department of the University Hospital Mannheim, Germany, the tremor is reduced as your toe leaves the ground and your leg begins it's swing phase. But once your heel strikes the ground the tremor is back. The foot that is in contact with the ground and is doing all the work is experiencing the tremor, even when you walk. But the other foot experiences some relief because the tremor is reduced.

But, throughout the gait, the one thing that didn’t change was the frequency (the speed of the tremor). So, based upon their results, the tremor always remained but the severity of the tremor changes.

read the research abstract here

Blahak, C., Wolf, M.E., Bazner, H., Capelle, H.H., Krauss, J.K., Hennerici, M.G.; Modulation of orthostatic tremor during gait [abstract]. Movement Disorders 2012;27 Suppl 1 :1233
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Thank you to everyone that has contributed their experiences and thoughts to this website and forum.

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

Le tremblement orthostatique primaire
Temblor ortostático: una entidad enigmática
Primaire orthostatische tremor

more information about Orthostatic tremor...
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ABOUT THIS SITE:
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.

medical disclaimer
website disclaimer