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Opinion On How Many Actually Get Better


maggie

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From Dr. Grubb's article: "Postural Tachycardia Syndrome." 2008

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"At present, only limited data are available on the prognosis of patients with POTS. Investigations are presently underway analyzing the outcomes of patients (overall, as well as within different subgroups); however, some basic trends have been observed. Over one half of the patients with postviral onset POTS appear to make a reasonable recovery over a 2- to 5-year period, with recovery defined as the relative absence of orthostatic symptoms alone with the ability to perform the activities of daily living with minimal restriction. However, some patients do not recover, and a small subset will worsen over time. For the most part, the younger the patient, the better the prognosis. In general, close to 90% of patients will respond to a combination of physical therapy and pharmacotherapy. Patients with the hyperadrenergic form of POTS usually require therapy indefinitely. The prognosis of those patients with secondary POTS is usually determined by the prognosis of the underlying disorder."

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From Dr. Grubb's article: "Postural Tachycardia Syndrome." 2008

article full text

"At present, only limited data are available on the prognosis of patients with POTS. Investigations are presently underway analyzing the outcomes of patients (overall, as well as within different subgroups); however, some basic trends have been observed. Over one half of the patients with postviral onset POTS appear to make a reasonable recovery over a 2- to 5-year period, with recovery defined as the relative absence of orthostatic symptoms alone with the ability to perform the activities of daily living with minimal restriction. However, some patients do not recover, and a small subset will worsen over time. For the most part, the younger the patient, the better the prognosis. In general, close to 90% of patients will respond to a combination of physical therapy and pharmacotherapy. Patients with the hyperadrenergic form of POTS usually require therapy indefinitely. The prognosis of those patients with secondary POTS is usually determined by the prognosis of the underlying disorder."

Reading that actually depresses me because I fit all of those-- Post viral onset at a young age, yet 10 years later I'm still here getting worse and worse every year. :( None of the POTS doctors I have seen care at all about looking at underlying conditions though. On paper a lot of these docs sound great, but I find they aren't all that good when you actually go see them. I'm not specifically referring to Dr. Grubbs here, so don't take that as a jab against him.

I think I'm in the lifetime category too, but no where near normal functioning!

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