Let's talk about my POTS!
I recently got a mobility aid to assist me, and I want to talk about that. But I feel like I should give the full backstory of my POTS in a post first, and then my next post will be talking about my mobility aid.
Content warnings for covid mention, feet pictures (blood pooling), and medical gaslighting
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POTS is short for Postural Orthostatic Tachycardia Syndrome. It is currently described as a dysfunction of the automatic nervous system, which is what controls involuntary things like heart rate, blood pressure, breathing, etc. but some studies incidate that it may also be an autoimmune disorder (though more research is needed on that).
The primary criteria for diagnosis of POTS is a heart rate increase of 30 beats per minute or more within 10 minutes of standing up from a resting position. Many experience other symptoms such as lightheadedness, dizziness, shortness of breath, cold and/or discolored hands or feet, fatigue, etc. and some patients even faint.
An ongoing issue for patients with POTS is getting a diagnosis. Few doctors or specialists know enough about POTS to test for it, and many doctors even blame it on other disorders such as anxiety.
I developed POTS after having COVID-19 in September of 2022. I was experiencing lightheadedness, dizziness, increased heart rate within a few minutes of standing, blood pooling in my feet, and fatigue. I went to my primary doctor at the time (we will him Dr. J), and he ordered bloodwork, which all came back normal. Dr. J brushed off my symptoms as anxiety and told me to stop drinking caffeine, so I did. I stopped drinking anything with caffeine (soda, coffee, etc.) for about a month, and it made zero change to my symptoms. After kicking caffeine had no change, he reluctantly referred me to a cardiologist.
The cardiologist I saw (we will call him Dr. B) had a heavy accent which made communicating with him difficult. I had to rephrase what told him about my symptoms a few different times, and he didn't seem to fully listen or understand what I was saying becuase the only symptom he wrote in my chart notes was orthostatic lightheadedness (lightheadedness when standing). Dr. B did send me off to have more bloodwork done, and have an ACTH stimulation test. All of these came back normal, so Dr. B said he couldn't help me because "it's not a cardiac issue"
So I went back to my primary doctor, and asked him if he would do a heart rate test. He told me he didn't have time for that, and Dr. J basically accused me of "worrying too much" and claimed all of my symptoms were "normal" and that "everyone experiences that" so I should just stop bringing it up. After he said that, I felt like I was being gaslit by him so I switched providers.
I made an appointment to see a different provider (he's a nurse practioner, so we will call him NP C. I cant remmeber the full acronym for his degree/job title) and at my very first appointment, he preformed the exact heart rate test I had asked Dr J. to preform without me even asking, and listened to all of my symptoms I was describing. He told me "yeah that's POTS" and I left with a diagnosis of POTS. This was either late October 2023 or early november 2023.
I then went to see a different cardiologist who had more experience with POTS, and he agreed it sounded like POTS but ordered a tilt table test to be sure. I had the tilt table test in late December 2023, and the cardiologist who prefomed the test (a third, entirely different cardiologist that I hadn't seen before) confirmed that I had POTS.
Unfortunately, I never got a follow-up appointment with the new cardiologist, because he was forced to re-retire due to illness. So I ended up seeing a fourth cardiologist, who didn't know anything more about POTS and POTS treatments than google does. She confirmed the diagnosis that I was given, but wasn't able to offer me any additional treatments. Medications to lower heart rate aren't an option, because my resting heart rate is already the low end of normal, and that taking one would risk bradycardia (low heart heart rate)
So it took me over a year to get a diagnosis, after being gaslit by my former primary doctor and not understood by a specialist. But I had my new provider and three different cardiologists all agree that I have POTS.
My advice to anyone who thinks they have POTS, but isn't being heard by their doctor, switch doctors if you can. Even if you've been seeing that doctor for years, switch doctors. I had been seeing my former primary doctor since I was a baby, but I couldn't handle being gaslit and accused of making things up anymore.
Below is a photo of my feet as an example of blood pooling. Depending on the device you are using to view this, the discoloration in my feet after standing may be less visible/dramatic due to different screens showing different colors. It's more visible and closer to accurate when viewed on a newer phone than it is when I view it on my laptop that I am using to write this post.
