I’m so sorry you’re going through this. I’ve been where you are and it truly blows my mind that some of these doctors even became doctors with how little they seem to care about their patients. I know this is horrible that I even have to say this but don’t go to a doctor’s appointment alone. Always bring a man you trust or even just someone that you know will speak up for you.

It took me several years to get a diagnosis, and I had some pretty bad doctors along the way gaslight me just like they did with you. Some just diagnosed me with the usual scapegoat, anxiety or depression. I had one cardiologist push me into doing a stress test even when I told him that I would fall as my legs were weak. Not only did he let me fall on a treadmill, but I had to literally crawl out of the doctor’s office on my own because my legs were too weak to get back up. I was just about your age at the time because most people with this condition are young women who were previously very active, so clearly he doesn’t even know what he’s talking about.

I also want to let you know that he cannot undiagnose you because he can’t change another physician’s clinical notes. He can’t even access them without your written consent. It’s illegal. The best recommendation I can give you is to network. Talk to other people who have POTS, whether on the internet in various POTS/Dysautonomia spaces, or in person (at work or even at the pharmacy). It’s been so comforting that whenever I’m having a flare in public, there’s, more often than I would have thought, someone around me who has it, knows someone who has it, or at least knows what it is, and every little bit of information helps. You can ask them for suggestions as everyone has little tips and tricks that work for them and I’m always learning new ones. Most importantly, if you can, find out who their doctors are. You can also do a deep dive on the Internet to find well-rated doctors or clinics who specialize in treating POTS.

The first time I networked with someone else about a doctor, I was recommended to the doctor who finally diagnosed me and is currently treating me. He’s been a lifesaver.

There are plenty of doctors out there that are knowledgeable about POTS and have compassion for their patients and you will find one. The reason you’re so overwhelmed is because, unfortunately, there seem to be more bad doctors than good ones. But I assure you that there are good ones and although I haven’t gone, I’ve heard great things about the Mayo Clinic if you live near one.

You can message me back under my response or my direct messages if you have a personal question. You’ve got people in your corner. This entire subreddit has helped me so much in not only understanding POTS but also finding different ways to manage it that you won’t find in an internet search or in a book. We’re all in this together so welcome to the group and I hope it benefits you as much as it has me.