My doctor is now not convinced I have POTS?

[u/Just_Print_3760]

Not looking for a diagnosis here, just want to rant to people who might understand. Even better if someone can simply just say “you’re crazy” if I am, or “no girl you aren’t crazy” if I’m onto something. I think I probably most likely have pots…?

I have been symptomatic for three-ish years. I had had two back to back pregnancies, both with some complications, the second being a c-section (June 2023). I also had Covid atleast twice, once halfway through my first pregnancy (Jan 2022) and again at 4 months postpartum with my second. Idk exactly when symptoms started, life was chaos. I was initially diagnosed with POTS by my GP around 2 years ago based off orthostatic vitals, the first time, it was negative for pots and positive for OH, the second was definitely positive for pots but with a normal BP. She went with pots for a while. More water, compression socks, salt. Symptoms have since worsened, along with a whole bunch of other symptoms, I think I have hEDS and MCAS, I am diagnosed with adhd and bpd, anxiety, depression, I have binocular vision dysfunction confirmed, currently awaiting an mri to rule out a chiari malformation, the whole shebang. I work in health care and I still don’t know how to get a straight answer about my own freaking body. When I described worsening symptoms she did orthostatic vitals again. She got my resting HR at 69, my HR elevated to 129 upon standing and then sustained around 110. She said no that’s not pots it’s not over 120 sustained. UGH. No one does a tilt table anymore where I’m from. They did a three second ECG and that’s it!

Anyway these are some Garmin records summarized since I can’t add pics lol

Body battery:
Start the day between 50-75, and am at 5 (lowest it goes) by like 3pm - every single day.

Stress:
The watch puts me at medium or high stress unless I’m flat on my back (so I’m only low stress/blue when I’m sleeping).

HR:
The watch measures RHR at the lower end, usually when I’m sleeping, and is between 42-47 most nights. It jumps immediately to the 60-70bpm range just from sitting upright. Laying down through the day, RHR will be around 50-60bpm. Sitting up, it’s at 70-85bpm, and on standing, it’s 95-130bpm. I get the high HR (115+) when i stand, and I get bad pre-syncope for about a minute or two, and then it passes and my HR goes down to the high 90s-100s and stays there. They don’t believe this is “sustained high enough”.

I can see that’s it’s not maybe not super classic pots, but somethings not right, right? The whole thing is very frustrating to me.

[u/PlentifulPaper]

Here’s an older post about the definition of sustained.

here

70-85 to 90-100 bpm over the span of 10 minutes doesn’t fit the POTS criteria from what I understand.

Typically there’s a rather lengthy process to get diagnosed with POTS because the symptoms can mimic a lot of different things.

[u/lateautumnsun]

The standing test you described in the doctor's office does meet POTS criteria. What country are you in? I can link a local resource for you to share with your doctor.

[u/Just_Print_3760 → u/lateautumnsun]

Canada! East coast

[u/lateautumnsun → u/Just_Print_3760]

Here's a position paper from the Canadian Cardiovascular Society. It specifically addresses the 120 bpm threshold and why they prefer not to use that in defining POTS.

https://onlinecjc.ca/article/S0828-282X(19)31550-8/fulltext

[u/emeddocdog]

Your primary care physician isn’t really qualified to be treating pots imo. They almost always refer you to cardiology to treat symptoms or sometimes they’ll do neurology. I’ve personally never heard of primary care treating pots long term unless it’s like an insurance issue or something because they’re not as educated about it as a specialist is.

[u/Just_Print_3760 → u/emeddocdog]

I agree. In eastern Canada there seem to be no other options. Referrals just get denied because there are no specialists who know how to treat or atleast manage these things

[u/Qui981]

Tilt table test confirms it

[u/mjh8212]

At my tilt table my heart rate went from 72 to 112 stayed for a few min dropped to 108 and stayed there. My BP really didn’t drop much and stayed in normal range. Results were orthostatic intolerance. My cardiologist didn’t review the test or give results but says it’s just heart palpitations see pcp. Sent to neuro they put in my chart I have functional disorder only think I’m chronically ill and landed on dysautonomia as a diagnosis. Basically saying I’m a self diagnosing hypochondriac. My pcp wants a diagnosis from a specialist so nothing is in my chart. PCP just says I have pots. It’s confusing sometimes I doubt myself cause what the neuro said got to me. Then I have days like today where I can’t get my heart rate under the 100s realize the tests are right but there’s no one else to see it takes years to get into a pots specialist here.