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Question About Pots Parameters


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Hi,

My neurologist is calling it "neuropathic POTS". The clinical trial I am interested in defines POTS as an increase in HR without orthostatic hypotension. I have both. I have a BP that drops rapidly into the 70s and a HR that climbs into the 130-160 range. Am I missing something?

Here is the clinical trial site:

http://rarediseasesnetwork.epi.usf.edu/ARDCRC/studies/6101.htm

TIA

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Hi Tia,

I always find this confusing too. On my TTT my bp was relatively stable so I got a POTS diagnosis, but in real life it often drops when I stand (and last year was even falling when I was supine). Other times it goes up when I stand. This makes it hard to know where we fit in terms of categories.

Have you registered to be contacted by this network when they are looking for research subjects? I noticed the only category for POTS is hypovolemic. I'd like to register, but don't know if I am hypovolemic. It's all very frustrating.

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Abetterjulie,

I am the same way. My ttt showed increase of HR and drop in BP. The doctor labeled me as POTS with orthostasis. In researching that doesn't seem valid.

When I take my BP sitting and standing at home, it seems like it always goes up. So confusing.

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I guess I missed when BP became criteria for a POTS diagnosis? If your HR increases by 30 beats per minute or increases over 120, this is POTS. If your BP drops this is NCS or PAF, you can have both, but POTS has nothing to do with BP and HR has nothing to do with a NCS or PAF diagnosis. I wonder why researchers are lumping BP into a POTS study? Why aren't they asking for patients with both POTS and NCS or PAF? Maybe I'm wrong has the criterion changed and hypotension is now part of POTS?

Just a rant on my part, way too many doctors think if you don't pass out you can't have POTS.

Now after looking at the study they are looking for just POTS patients, nothing else, no NCS or PAF.

Edited by toddm1960
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You're right, Toddm. POTS patients have an increase in heartrate of 30 beats per minute or over 120 within a few minutes of standing. Orthostatic hypotension, NCS, PAF, etc. patients have a drop in BP on standing. You can have both POTS and another dysautonomic diagnosis at the same time, like OH or NCS, but they are two separate diagnoses.

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So, I guess I need to ask Dr. Khurana about having both symptoms to see what he says. I take Midodrine for the BP, but have the diagnosis that matches the HR. I also have symptoms that more clearly match PAF, such as urinary symptoms. I have loss of sweating in my feet, too. It is confusing, and I'd really like to have it clarified. I am thinking of applying for disability, and I am pretty sure they would want that stuff to make sense.

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