P.O.T.S. or Postural Orthostatic Tachycardia Syndrome, is a chronic illness that causes dysfunction in the autonomic nervous system. The causes of P.O.T.S. are still being researched and little is understood about it in general. This illness was first documented in the 1940s, but wasn’t fully recognized by name until the 1990s. There is no definitive test for P.O.T.S. because it’s under researched, and symptoms are often written off since it mostly afflicts adolescent women.
I was diagnosed with P.O.T.S. on January 17th, 2025. I had been looking for a diagnosis for my symptoms since December of 2023. I went to a psychiatrist, general pediatrician, cardiologist, and finally, a neurologist. I was tested for a thyroid issue, hormone imbalance, an adrenal tumor, arthritis, autoimmune diseases, Lyme disease, anemia, pre-menopause, and heart problems. I got my blood drawn about 6 times; one of those times I even passed out due to an incompetent medical student who didn’t know how to put in a needle. After all of that testing, my G.P. (general practitioner) suspected that I had P.O.T.S.
To confirm or rule out the P.O.T.S. suspicion, I was sent to a cardiologist to get something called a tilt table test done. Instead of that happening, the cardiologist refused to do the test because I wasn’t hydrated enough. He told me I definitely didn’t have P.O.T.S., and the symptoms I experienced were simply because I was just a dehydrated and a pubescent girl. Asshole. He reluctantly gave me a heart monitor to wear for a few days to ensure that the almost constant tachycardia wasn’t damaging my heart. The results came back as a bunch of charts that we didn’t understand, and despite several messages from my very pissed off mother, he never got back to us.
Losing hope, we went to a neurologist next. After answering his questions and doing some tests, the neurologist said he was more than confident that I had P.O.T.S., and I was finally diagnosed. He had no idea why the cardiologist was so sure I didn’t have it and even messaged him for clarification. Surprise surprise, the cardiologist never got back to him.
When I finally received a diagnosis, I was put into an emotional blender. On the one hand, I was just happy I didn’t have cancer. On the other hand, I had to come to terms with the fact that I wasn’t going to get better. I was told I would never be able to live a normal life, and I would have a possibly-debilitating-at-times-illness. And this upsetting news was passed on to me when I was in my most vulnerable state: sitting in a chill doctor’s office wearing a Spider-Man T-shirt from the little boy’s section of Target.
The next step was finding treatment, but that was easier said than done. Most doctors refuse to prescribe any medication that could help lessen P.O.T.S. We were on our own. As of now, our method of treatment is compression socks/ leggings along with drinking a LOT of water with electrolyte powder and hydration drops. When I do have a P.O.T.S. flare up, there’s little we can do except wait it out. Sometimes they last for 3 hours, sometimes they last 15. But all the doctors can tell me is to stay hydrated.
There is one doctor who is considered to be “THE” specialist when it comes to P.O.T.S. His name is Dr. Armitano. This balding white man is the only person in the U.S. who will prescribe me treatments like medication and IV infusions. He’s extremely booked up, and the soonest we could get an appointment when we booked in January was in late April! He’s privatized his research and assistance, making it very difficult for people to get help from him. Dr. Armitano has decided not to take any insurance and to charge crazy fees. A single consultation with this man is going to cost my family over 20k. Assholes.
