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Women's Pots Miraculously Disappears Day Of Appointment With Well Known Pots Doctor


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Hi Everyone,

Just wanted to throw this out there for feedback.

I had been looking forward to advice from a well respected POTS doctor for months and traveled by plane to get there. It happened earlier this week. Going in, I already had a diagnosis of POTS and EDS hypermobile, and for once felt I had nothing to prove to the doctor. That feeling dissolved within the first 5 minutes of the appointment.

During the vitals testing, my POTs had “disappeared”. It jumped from a resting number of 50 beats per minute to something like 65 beats – totally normal and unprecedented in my last few years of monitoring. I was shocked and got panicked. I may have been completely defensive as a result of this (years and years of being dismissed by doctors), but I got the impression over and over again during the appointment that I was coming across as a complete quack and/or hypochondriac. Or that I was highly exaggerating things. The whole time I felt like I was arguing that things were as bad as I was making them out to be. While I do have some cardiac symptoms, I find it is the non cardiac issues that are disabling me (fatigue, brain fog, anxiety and insomnia).

((They went along with the fact that I had POTs (I had a bunch of previously recorded vitals and a positive tilt table test) and I had a family member there to verify the fatigue. It was also evident that I had EDS hypermobile. Still, this has my anxiety racing. I’ve been off work for 6 months, and I don’t feel capable of going back. I need medical support for my disability claim which hasn’t been approved, and which at the moment, I think is going to be denied.))

But back to the miraculous disappearance.

The next day my POTs was still gone, numbers wise.

The day after that, and the POTs was back.

My theory of why it happened:

The day of the testing was the second to last day before my full blown period arrived. I was extremely bloated and carrying a lot of extra fluid. I think this fluid retention was possibly the reason my numbers were normal.

When my menstruation fully started, two days later, my POTs returned to “normal” – generally an increase of 40-50 beats in the range of low 50s high 40s to high 90s low 100s. Right after the heavy bleeding started, I felt waves and waves of anxiety in the early afternoon and I knew the numbers would be back to usual.

Three days later, and the POTs is as per usual.

So, I'm just wondering, how can this brief absence of POTS be possible? Has anyone had this happen? Somehow due to increased levels of progesterone and estrogen. Or sharp drops in levels of progesterone and estrogen...

It might be significant in terms of testing, if a couple days out of the month numbers are screwy and not reflective of the norm.

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It is frustrating, but I actually wouldn't worry about this too much. You aren't the first POTS patient on the forum that this has happened to! In general, white coat syndrome is normal - meaning that patients often have different results when they show up at the dr's office. POTS is also a condition which is up and down. A leading dr would know that people don't have symptoms every day. The positive TTT is enough to diagnose you. I am glad that the dr believed you, and hope you find treatment.

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I had a similar but different experience. The first TTT take my cardiologist have me I failed and felt awful and had to be given an iv of fluids. I get an appointment to have a TTT done while doing autonomic testing and she said everything was within normal ranges and that they didn't know what I was feeling but everything appeared normal. Pretty frustrating. I have improved though on her recommendation to excersize and stay hydrated.

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  • 2 weeks later...


There was a program on radio 2 with vanessa Phelps and a doctor talking about pots with woman who had really debilitating symptoms and was in a wheelchair. She said that if she swam or flew she could then stand for a day or two afterwards. She did one or the other before her wedding so that she could stand for the day. Maybe the flying had a positive effect on you. I remember the woman saying this really clearly as flying has the opposite effect on me and i will never fly again as a result.

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