POTS! POTS! Read all about it! Next up for Women’s Health Week is our very own associate ED Reina who has POTS, a condition that’s been on the rise ever since—you guessed it—Covid. See what’s going on below.

If you’ve heard a lot about the medical term POTS lately, it’s probably because a ton of people are being diagnosed with it, just like Reina Sultan (she/her), associate editorial director of The Newsette. As to why this is happening, she has a few thoughts: “POTS has always been more common in women, as are most of the comorbidities. As to the increase in cases, I would attribute that to Covid. It’s one of the most common types of Long Covid, but even some specialists don’t understand or recognize it very well. Since it’s an invisible illness that more often affects women, there’s a lot of medical gaslighting at play, too.”

Unfortunately, that makes sense. Keep reading to hear about her own diagnosis, common symptoms that individuals might share, and Reina’s advice on what to do if you think you might have this (literally) dizzying disorder.

How did you find out you had POTS?
After having Covid in May 2022, I started having some weird symptoms. It began with rashes which I’m still undergoing tests for, but was then narrowed down to histamine intolerance or MCAS. But then, I started having “episodes.” I would be sitting around doing nothing and all of a sudden, my heart rate would sky rocket, but my blood pressure would lower. I felt like I was going to faint while having a panic attack. This would culminate in me throwing up most of the time. It was honestly terrifying.

I also began having a really hard time in the heat, experiencing vertigo, and getting shoulder/head pain after physical activity. Online research led me to believe that I had POTS or another kind of dysautonomia, and I made a cardiologist appointment where that was confirmed.

Do you know of any common symptoms that people share among the POTS community?
POTS stands for postural orthostatic tachycardia syndrome and the name kind of indicates the common symptoms. It suggests signs like tachycardia (fast heartbeat) and orthostatic intolerance (intolerance to standing)—which is usually attributed to blood pooling in the extremities as well as reduced blood volume being returned to the heart. Someone with POTS might struggle with fainting, dizziness, vertigo, nausea, brain fog, headaches, and fatigue.

Have you had to make any lifestyle changes since being diagnosed?
Yes! My whole routine has changed. Every morning when I wake up, I sit up in bed for a while rather than standing up right away. I then try drinking water and electrolytes before getting out of bed. (I use this powder in this cool whisking bottle.) All of this is in hopes that my heart rate doesn’t jump up too much at the start of the day. Then, I put on my compression socks which I wear all day. Some people wear them at night, too, but I’ve found that daytime use is enough for me. I eat a lot of tiny meals throughout the day because eating a really big meal can be a big trigger for me. I also limit my exertion, both physical and mental, as much as I can. A lot of people with POTS have exercise intolerance, which can set off a ton of nasty symptoms.

Aside from the above, are there any other treatments you use?
During a flare up, I take propranolol which is a beta blocker that slows down my heart rate. I make sure to drink plenty of electrolytes if I take that to even myself out.

I’m currently doing the Levine or CHOP/Dallas Modified Program under the supervision of a physical therapist in order to try to train my heart to withstand exertion a bit better. We take it super slow, but it’s shocking to see how unwell I get after doing 10 minutes of biking when I used to be a spin girlie who could do doubles.

What’s your advice for those who think they might have POTS but don’t know what to do?
I would advise looking on social media (ex: Twitter, Reddit, FB, etc.) to find healthcare providers who know of and understand POTS and other kinds of autonomic nervous system dysfunction. Try to make an appointment ASAP. When I found the cardiologist I wanted to go to in November 2022, her first available appointment was in February 2023. If you can do so at the same time/ without seeing the doctor first, try to get a tilt table test scheduled. These are often even harder to get appointments for since there are few places to get tested while so many people seem to have POTS post-Covid infection.

In the meantime, get a heart rate monitor and collect data on the changes in your heart rate when you stand, sit, and lay down. Make sure to watch out for how long it takes your heart rate to recover after being elevated. All of this info will help a medical professional with diagnosing you. In terms of immediate relief while you wait, you can try compression garments, lots of water and electrolytes, and laying down with your legs up when you feel symptoms coming on.

And finally, what’s your advice for those dealing with POTS?
I’ve said a lot above about what works for me, but I think trying to find other POTSies online is super helpful because patients know their needs best, even if doctors think they’re the experts. You might uncover a treatment you didn’t know about or a better electrolyte solution by connecting with others with the same or similar conditions. If you have other symptoms that aren’t explained by POTS, look into commonly comorbid conditions. A lot of us also have MCAS and/or Ehlers-Danlos Syndrome.

Is there anything else you’d like to share?
It’s hard to know what the truth is about Covid these days, especially with the emergency ending while the CDC releases new guidance on improving air quality and encouraging masking. But one thing is certain: Covid can cause POTS, and the more infections you have, the more likely you are to have a bad outcome. So, try to avoid infection and reinfection as much as possible.