IMPORTANT NEWS: Primary Orthostatic Tremor Research Grant
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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.
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.
**Hz = oscillations or tremors per second
* The term Primary is often used interchangeably or in conjunction with idiopathic when describing Orthostatic Tremor. Idiopathic/primary is defined as “...from an obscure or unknown cause”. Primary Orthostatic Tremor often describes a condition without other neurological features whereas Orthostatic Tremor plus or OT plus is a term which is often used to describe a condition where other neurological features also exist such as: Parkinson’s disease, Parkinsonism, Ataxia, hemifacial spasm, Restless Legs Syndrome, Tardive Dyskinesia, Essential Tremors, Head trauma, Pontine lesions, Aqueduct stenosis, Peripheral neuropathy, and others. OT Plus has also been referred to as: secondary OT, and symptomatic OT.