20 Signs You Might Have POTS

Despite how common postural orthostatic tachycardia syndrome (POTS) is (it’s estimated between 1 and 3 million Americans have it), many people with the condition can name a time when they were experiencing symptoms — but didn’t know POTS was the cause. There’s so little awareness of POTS, and all forms of dysautonomia, among the general public, so it’s sadly common for people to be dismissed when they say they’re feeling lightheaded, black out or have a racing heart. You may not even realize it’s not “normal” to feel these things!

POTS is typically characterized by an increase in heart rate upon standing, but as a disorder of the autonomic nervous system, it can affect the rest of the body in various ways as well. We wanted to highlight some of the signs that may indicate someone has POTS, so we asked our Mighty community share signs of POTS they experienced. (Please follow up with your doctor for more information and to rule out other conditions.) If you have POTS, perhaps you’ve experienced these signs, too.

Here’s what our community shared with us:

1. “I always craved salty foods, even in my family who tried teaching me to avoid it… Anytime I was able to I would eat salty food and it made me feel better.” — Angie K.
2. “In grade school I couldn’t play with the other kids at recess because my heart rate would get so high that I couldn’t breathe and would begin to pass out. I thought that I just had poor stamina.” — Alexandra J.
3. “I couldn’t sit down right after gym class because if I sat down, I passed out when I stood up. I also got scolded a lot for sitting cross-legged at my desk, on the couch, or at the dinner table, because ‘I felt better’ sitting that way, even though I couldn’t quite explain why I felt better.” — Trisha P.
4. “I thought everyone stood up and their vision went white at the edges!” — Stacey G.
5. “When I was a kid I had difficulty standing during choir, same with drill practice at cadets as a teen, and I was unable to stand at my wicket to serve customers when I was a bank teller, I needed a chair. All of these things would make me very lightheaded and nauseous. I didn’t understand why it made me feel sick.” — Sheryl F.
6. “Migraines. I was having really bad migraines that would pop up after situations where my heart rate was high. I had a really stressful day at work as a certified nursing assistant where a patient had started to tank, and at the time, I was still in orientation, so I was pulled to train as a scribe, only to find out it was my patient who was in trouble. My heart rate shot up due to the stress and anxiety that it induced. And then I was also a person who had to be bradycardic. But suddenly my resting heart rate was 122, and I could barely stand for long or walk far without being severely exhausted.” — Saylor A.
7. “My heart rate is consistently over 100 BPM. I also have significant blood pooling in my legs.” — Christa R.
8. “Showers were extremely difficult for me and made me sick every time. My parents always thought I was faking to get out of taking them, but showers always made me sick.” — Claire M.
9. “Heat intolerance. I would get horribly dehydrated whenever it got warm outside resulting in all sorts of symptoms and oftentimes would quickly turn to heat stroke if I wasn’t careful. I had no way of controlling it aside from not going outside when it was hot until I was diagnosed. Now I still have to be careful and avoid heat, but I can manage it much easier!” — Katelynn N.
10. “I thought it was normal to stand up and see nothing. So normal that I instinctually kept going and just guided myself along furniture and walls until my vision returned.” — Tab M.
11. “Seeming more nervous than I am (because my heart is racing and I’m in fight-or-flight mode) when I’m standing up talking to people. I had finally gotten truly comfortable with public speaking in my early 30s when my POTS started to get bad. It’s definitely affected my career path.” — Kate E.
12. “I used to lie about my heart rate in gym. I thought I was unfit because my heart rate would skyrocket and I’d get dizzy so fast.” — Samantha R.
13. “Having the machines at the gym that monitor heart rate beep frantically after I used it for like 30 seconds. The trainers would always come over and advise me to stop… that’s why I love the pool!” — Staci H.
14. “Not being able to clean. Not being able to bend over to pick stuff up from the head rush and dizziness.” — Katrina G.
15. “Playing sports, I would black out or pass out from heat and running. My coaches told me I was out of shape and pushed me to work harder. Turns out it was POTS, and no amount of conditioning was going to cure it. Made me feel pretty terrible about myself for years.” — Kerri B.
16. “Temperature intolerance! I cannot stand to be in anything above 60 degrees Fahrenheit without feeling like crap. Winter is my savior!” — Michelle K.
17. “Losing my vision in the shower. I didn’t know this was dysautonomia. I thought it was something normal so I never brought it up.” — Samantha R.
18. “I was diagnosed at 15, but as young as 9 I was heat intolerant. I was a ‘low energy kid’ my whole life. I stopped being able to sleep and had terrible nighttime anxiety (what we now know are adrenaline surges and tachycardia). I always had severe blood pooling, even before POTS symptoms came in full force.” — Sam S.
19. “I always thought it was normal to ‘see stars’ when I stood up, bent over, etc. I’ve never been able to run without feeling like my heart was going to come out my throat and couldn’t catch my breath… as a kid/teen I always felt like something was wrong but pushed harder to be like everyone else.” — Nicole T.
20. “[A] sign was getting out of breath from everything. Sitting up, standing, walking, everything lead me to being disproportionately out of breath. All of this started to make sense only after my POTS diagnosis.” — Anastasia G.