It started in March 2020 with chest pain and shortness of breath. By mid-July, I was blacking out after taking ten steps from standing up, falling down after walking up just four stairs from exhaustion and a pounding heart, and completely fatigued each day. Lightheadedness, nausea, blacking out, chest pain, pounding heart…it was an everyday experience only alleviated when I was laying down.
A friend asked if I knew of POTS, but it was never a term I’d heard before. Doing at-home tests by laying down (HR 70 bpm) then standing up (HR 120 bpm), I was convinced this was it. This began the journey of more than eight doctors at four different hospitals/clinics, and a slue of tests including a two-week holter monitor, stress test, multiple echocardiograms, MRI, nerve conduction study, and more. I was finally able to get a tilt table test in June 2021, and at 20 minutes of standing I fully passed out. I was officially diagnosed with POTS with syncope.
Despite being told by my doctors, “Young girls like you will grow out of it”, “You just have a generally fast heart rate”, and to “Probably just cry about it”, my diagnosis confirmed the reality I live each day. Now, I am still trying to find what helps my body, and I stand (well…sit) as an advocate for people with POTS.