Postural Orthostatic Tachycardia Syndrome
I began searching my symptoms. “Normal” labs, dizziness (especially upon standing), fatigue, heat/cold intolerance, and of course, tachycardia (heart rate over 100 bpm) when standing. POTS appeared to fit all of those symptoms, so I asked my cardiologist for a tilt table test. She stated that she didn’t think I had POTS, but agreed to a test. I had significant symptoms during my test, including tunnel vision, shortness of breath, sweating and a sustained increase of 25 bpm (however, it was 95 at “rest” and 120 standing). She stated that I did not have POTS, and that was that. No follow-up or treatment of my symptoms. No thorough work-up or holter monitor.
I did more research. While a sustained increase of 30+ bpm is the traditional diagnostic criteria for POTS, a sustained heart rate above 120 bpm along with symptoms is considered diagnostic, as well. Then, I got an idea. If I can find a doctor listed as an author in a research paper, then I can find someone with the latest insights in POTS research. That’s when I found Dr. Suleman at the Heartbeat Clinic. Luckily, he was within an hour from me, so I made an appointment.
It took several months to get in with Dr. Suleman, but it was well worth the wait. I started my journey in 2016, and by the end of that year, I found out not only did I have POTS, but I also had Ehlers-Danlos Syndrome (diagnosed by Dr. Golder Wilson – a renowed specialist in his field), severe gastroparesis (diagnosed with an emptying scan at Dr. Suleman’s clinic), Median Arcuate Ligament Syndrome (diagnosed with celiac artery duplex scan in Dr. Suleman’s clinic and later confirmed with a CTA), as well as high levels of Lyme Disease and Esptein-Barr Virus antibodies. FINALLY, I was validated and my instincts that something was amiss in my body were confirmed.