I had POTS before COVID, but it got worse after COVID. And you’re right, there is a link between viral infection and POTS. My original onset occurred after a viral infection.

I’m not trying to minimize the importance of a provider who treats POTS, but there’s actually a lot you can do aside from medication and there are many online resources. There are tons of POTS blogs and organizations who publish guidance, recommendations, even exercise protocols. I’d hate for you to just be waiting until that 2026 appointment =(.

These are a few of the well-known National and international organizations: https://www.standinguptopots.org/
https://www.potsuk.org/managingpots/
Sadly, there aren’t enough autonomic neurologists or doctors who treat POTS before COVID. Now there are definitely not enough. 2026 is a long time.

The first-line treatments for POTS are drastically increasing your fluids (which increases your blood volume), especially with electrolytes if possible. If it’s safe for you to increase sodium, that helps too. I use a supplement called Klaralyte, specially designed for people with POTS and similar conditions. Compression leggings, tights, or abdominal binders help with the blood pooling that causes the dizziness, but I haven’t been able to tolerate it.

If your fatigue isn’t so bad and you can do even a tiny bit of exercise—swimming or starting in a supine position like a recumbent bike, or Pilates-like exercises down on the floor, even if you start at a few minutes and slowly increase. Over time, the cardio prompts your body to increase blood and blood flow which helps the symptoms.

If your cardiologist or even PCP is willing to work with you, much of the information about off-label use of medications for POTS is widely available and the medications are older ones that have been used before for other conditions. They might be willing to prescribe them if you don’t get enough relief from increasing fluids and/or salt and if that can get you over the hump to be able to start PT or exercise.

Not sure if you’re willing to travel, but you could try calling the POTS Clinic at Johns Hopkins to see if their wait list is open. I had to wait about 9 months to see one of the PAs for Dr. Tae Chung, who is the clinical director of their POTS Clinic and now is very involved in research and treatment of Long COVID. He’s been treating POTS since before COVID.

I live in the Midwest and it was totally worth it for me because as you pointed out—not many physicians treat POTS. Mayo Rochester misdiagnosed me and Mayo Jacksonville Autonomic Neurology declined to see me despite test results from Northwestern Medicine in Chicago. Access to specialists is really rough.

You could also look for a PT locally who treats POTS—there are more of them (in my experience) than physicians and I got a lot more practical advice from my PT than from the physicians I immediately saw.

There is hope—just getting a diagnosis can be a huge hurdle for those of us with POTS. It’s been said from surveys the average time it takes to get a diagnosis is 5 years or more. Now that you have an idea of what could be affecting you, it can give you a path for where to look for things you can do, but I know it’s hard. You’re definitely not alone.