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lindsay.sparkles

Orthostatic intolerance but not quite POTS?

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Hi everyone,

I'm a 25-year-old woman. I have hypermobility syndrome/hypermobility spectrum disorder and was evaluated by an EDS/HSD clinic in my city. I have a lot of issues with lightheadedness and palpitations when standing up and especially if I've been bending down and stand up, or even with mild exercise, such as climbing a few stairs. I've had an echo (normal) and a holter (no arrhythmia). During the appointment at the EDS clinic, they did a "poor man's tilt table test" (got me to lie down and stand up) and said that while I definitely have orthostatic intolerance, and my heart rate goes up, I don't quite have the 30 bpm increase associated with POTS. I don't have orthostatic hypotension either, my blood pressure runs kind of low in general but does not drop significantly when I stand up.

My biggest issue is intense tachycardia (sometimes up to 160 BPM) with mild exercise like climbing stairs or walking up a hill. I can't possibly be that out of shape - I walk a ton.

Does anyone else have orthostatic intolerance without technically having POTS? Is this another form of dysautonomia?

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I think you'll need an actual tilt table test to rule it out. Being at 70 degrees for up to an hour is different than standing in a doctor's office for a minute or two. Your heart rate may well have gone up higher during an actual tilt table test. I have a poor man's test done when I go see my POTS doctor,  and sometimes I have a 30 BPM differential, and sometimes I don't.

I have trouble with stairs too. My HR goes way up. And I exercise as much as I can, and I average 20 flights of stairs in a day because I live in a 4 story house. Especially when it's higher humidity and lower barometric pressure, I can get quite winded going upstairs. 

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