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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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  • 2 weeks later...

The 30 bpm increase is on a tilt test.  It makes a difference.  I was anxious the week before because my poor man's tests at home weren't all over 30.  i was having a good week.  hah!  They tilted me to 80 degrees and my HR shot up 99 bpm in the first minute.  Tilt test is a whole different ballgame!

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Symptoms are up and down. You won't have the 30 ppm increase every day.  And many people with dysautonomia have EDS.  Start keeping a log of your resting and standing HRs at various times in the day and you'll have a better sense.

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I'll agree with everyone that a tilt table is a far different experience. But also, if you do another poor man's tilt table, either on your own or in a doctor's office, it's important to make sure you're not applying any countermeasures. A lot of people with dysautonomia subconsciously learn ways to manage their symptoms, like bending their knees or tightening leg muscles when they stand up, which alters blood flow and lessens severity. That's why the Tilt Table is so effective - you're strapped down and less mobile and don't have the same impulses from muscle memory you have when you stand. So I'd suggest you try re-testing yourself but be very aware of how you stand and keep your body straight and still. 

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