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POTS diagnostic criteria


Nathalie
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Has any one tried a tilt table test while on florinef? Do they make people come off it before hand?

Also, what is everyone's take on the diagnostic criteria for POTS? Should a heart rate be at least 30 bpm above resting *for at least 10 minutes* for someone to say you have POTS? Anyone have any tilt table test results that can weigh in on it? I'm not asking for myself but rather out of curiosity.  I know that for myself, while I do pretty good on florinef, I have days when I have a 60 bpm increase above resting. And over the course of 5 minutes, it will go up and down a little bit but always goes back up to the 120's, despite the short lived dips.

I ask because I wonder how fickle some specialists can be about telling people they don't meet the criteria...as I've read stories on here and find them crazy infuriating that people get dismissed without even being seen by specialists.

 

 

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I must have something other than POTS, but I did have a TTT while off medications, and one reason why I probably "didn't meet criteria " for another diagnosis is that when my BP dropped it didn't go a full 10 points every time. That's because I was already low, and 10 points between 130 and 140 is very different than between 94 and 84. The "super awesome neurologist guru" who ordered my testing before seeing me did not give me the pleasure of seeing him after that. What a waste, and a terrible experience. My next neurologist actually saw me and spoke to me before ordering testing. I mean, did the first guy imply that I had nothing wrong with me because it didn't fit his neat little boxes for one of a few diagnoses!?

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The official diagnosis criteria is a 30bpm increase when standing, but my doctor views that as more of a guideline than a rule.  There are a variety of things that can cause a variance in that number throughout the day (anxiety, the amount of recently consumed fluids and sodium, etc) that I agree with my doctor's view of it.

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My TTT on florinef showed drop in BP and rise in HR but did not "exactly meet criteria" for POTS but rather Neurocardiogenic Syncope (though I never passed out-not even with BP of 58/40 but boy! did I have a lot of symptoms at that BP) The stress from my job and life at the time was the trigger factor for my flares that made it impossible to work. As long as I am home and doing my routines-doing things in 30 min increments with rest afterwards, I do OK. I am still trying to get social security disability because the anxiety of work, or stress of any kind (even travel-flying-to a cousins wedding) causes me to flare. Everyone with POTS is slightly different in some ways and so dead on with others, it is definitely a cause of frustration. It took me several years of pushing doctors to get a TTT that is evaluated by the right doctor , so keep looking and hopefully you will find your answers.

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I think doctors disagree on whether to be on meds for the test, so ask your dr.  But the meds would affect your baseline condition and could mask your symptoms.  So it never made sense to me personally to be on meds for the test

A positive TTT is great - conclusive - but POTS symptoms wax and wane on any given day. You might have POTS and it doesn’t show up on the test on a good day.  So I think it is helpful to keep a home record of HR and BP.  You will start to see a clear pattern if you have dysautonomia.

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