16 Signs You Grew Up With POTS


Editor's Note

Any medical information included is based on a personal experience. For questions or concerns regarding health or diagnoses, please consult a doctor or medical professional.

Postural orthostatic tachycardia syndrome, commonly known as POTS, is a form of dysautonomia in which a person experiences excessive tachycardia (an abnormally fast heart rate) and other symptoms upon standing. On average, it takes nearly six years for someone to be diagnosed with POTS. So even if someone doesn’t get diagnosed with POTS until their teenage or adult years, they may have been experiencing symptoms for many years that simply got overlooked or misdiagnosed.

Sometimes receiving a diagnosis as an adult not only puts a name to your current set of symptoms, but can also make sense of some of your childhood experiences. We asked our Mighty community to share some of the signs they grew up with POTS, which they now recognize in retrospect. Perhaps some of the following experiences will ring true for you, too.

Here’s what our community shared with us:

  1. Every time I stood up, my vision would go black. I thought it happened to everyone. I also could not stand for long periods of time without blood pooling and becoming lightheaded. Looking back after diagnosis, it’s very clear something was going on that my doctors were missing.” – Shelby K.
  2. “On the soccer field I was dizzy and my heart would beat so hard that you could see it out of my shirt.” – Kayla K.
  3. I was only diagnosed last year but it’s so clear that I have had POTS for a long time. I never have been able to lay on my stomach and pick my head up, like how people lay on their bed or couch talking to others, without feeling completely dizzy. I’ve always dealt with a racing and/or pounding heart at rest but was told it was normal or just anxiety. There were some days I felt so dizzy and didn’t know how to describe it because I wasn’t actually spinning. So I’d just tell people I didn’t feel well. Also, I’ve had to sit or lie down after showers for a long time.” – Nicole C.R.
  4. “Learning to test BPM [beats per minute]  in gym class: I didn’t dare tell the class my numbers, because they didn’t match with the others kids’ numbers. I believed I was either counting on the wrong place or just sucked at counting (I was good in math). After running I couldn’t count that fast…” – Aili K.S.
  5. After gym class or sports, I couldn’t sit down. If I did, I’d pass out when I stood up. Doc diagnosed me with low blood pressure, and told me to be careful. People would comment on me swaying as I stood, or standing like a flamingo while leaning against things, because I didn’t feel as tired or shaky when I did that. I also got scolded for trying to sit pretzel style at the table or in my desks, because sitting like that helped me be less fatigued.” – Trisha P.
  6. “The purple legs. Never being able to exercise well. And the dizzy spells and low blood pressure even with a disease that typically has high blood pressure.” – Jennifer S.
  7. I would pass out if I had to stand in one place for too long. Grade school programs always gave me anxiety for that reason. I was told to quit ‘locking’ my knees. I still get that hot, sweaty, nauseous feeling, especially if it’s warm and I’m just standing in one place.” – Marquelle W. 
  8. I was always so sleepy. Every school day at the same time I was unable to keep my eyes open. I even had an agreement with my table mate, he would make sure I was awake by time the bell rang or if it looked like I was going to get in trouble. I hated it but it was out of my control.” – Ashley C.
  9. I used to hate doing the spinny things at the park. They always made me nauseous, dizzy and feel like I was going to pass out. All the other kids seemed to enjoy them but they made me symptomatic.” – Kayla K.
  10. “I struggled in P.E. Always the last one. Always tired and running out of breath. Couldn’t run, chest pain and fainting and gastro problems.” – Farzana S.K.
  11. Heat intolerance. In southern California school campuses are outside; classrooms are indoors but hallways and cafeteria are outside somewhat covered. On hot days I felt terrible, nauseous, weak, tachycardia, blackouts upon standing. I also had undiagnosed gastroparesis and every day it was hot I would vomit and feel incredibly lethargic.” – Tylor R.C. 
  12. “Medication sensitivity, migraines, chest pain during increased exertion.” – Julie A.
  13. Blacked out every time I stood up all through high school. I learned to walk up to the board not able to see anything so that I didn’t look weird just standing beside my desk. During gym class, my face would always be super red and I’d get overheated so fast, and my heart rate always way higher than everyone else’s right away, even though I wasn’t really out of shape. Diagnosed with POTS at 24 (along with some other issues), and now it all makes sense!” – Beth H.
  14. “I would always wake up for school feeling like I had a temperature (it was always low grade but never got worse) and just not well. I had to get up and go to school because I couldn’t miss, my parents said when I got old enough to work I couldn’t miss work just because I didn’t feel well.” – Samantha B.L.
  15. I was always passing out. We used to think it was something like overexertion, heat exhaustion or not enough protein. My heart rate was always high, my friends used to tease me but I just thought it was normal and my doctors all thought it was stress or caffeine so they shrugged it off. It was always significantly worse when I was in pain.” – Tracie G.
  16. I used to hate shopping when I was little. I never understood why, but I just felt so fatigued after walking around for even 30 minutes in a store, and I always thought it was just me… Until I used a wheelchair the other day for the first time in my life. I was with my family, and we shopped for over two hours! I loved it! I now realize that it’s not just me. It’s my dysautonomia making it extremely hard for me to walk long distances. Now I want to go shopping again!” – Cassandra B.

Find this story helpful? Share it with someone you care about.


Related to Postural Orthostatic Tachycardia Syndrome

A picture of a woman sitting alone in a field.

How My Illness Gave a Whole New Meaning to the Word 'Lonely'

Is anyone out there? Fellow spoonies will know all too well that having a chronic invisible illness is lonely. In fact, for me it has given a whole new meaning to the word “lonely.” Previously, lonely meant not having a partner. Being far away from family and friends. Being literally alone. Before – as long [...]
back view of a female boxer flexing her biceps and wearing pink boxing gloves

Preparing for Battle: The Daily Struggle of Living With POTS

Today is one of those days where I just can’t. But today can’t be one of those days where I just can’t. I have too much to do. I don’t need the lightheadedness, heart palpitations, body aches, tremors and headache. I don’t need the pain. Not today. Not ever, if we are being honest. POTS doesn’t [...]
Mother and daughter are having fun at home. Mother touching daughter's nose.

My Adventurous Life Dealing With POTS While Raising Kids

I grabbed my notes from my cardiologist appointment. Maybe he just sent it to the wrong pharmacy? They told me he had called it in a week ago, but here I was and my medicine was not where it should be. I take a medication that elevates my blood pressure to minimize the pre-syncope symptoms [...]
double exposure picture of a woman with clouds across her eyes

When My Vision Problems From POTS Cause People to Think I'm 'Rude'

I cannot tell you how often I get this feedback: “We thought you were really rude until we got to know you.” Ugh, those words sting, but you know what? I am not the only person who experiences this kind of misunderstanding. To be honest with you, if you once thought this as well, I [...]