“It’s Probably Nothing” — Until It’s Not: What POTS Taught Me About Delayed Diagnoses
A new client shared this story with me recently, and it is why she reached out.
Her daughter first started showing symptoms three years ago. It started after a bout of COVID. Racing heart. Nausea in the mornings. Brain fog. Left arm pain, Weakness. It looked, on paper, like it could be anxiety. The episodes can mimic a panic attack. And for three years, anxiety is what it was called.
Every cardiac workup came back clear. Holter monitor, ECG, echo were all normal. So the assumption held: anxious teenager, panic attacks, nothing physically wrong.
Then, this past May, she went back in with her daughter, this time asking to see the holter report herself. She noticed something the doctors hadn’t flagged. Every heart-rate spike lined up with her daughter standing up. Not exercise. Not panic. Standing up. The clinical note had attributed one spike to “physical activity.” The activity was walking to the refrigerator, on a day her daughter hadn’t left the house.
Once that one assumption got corrected, an in-office simple test, sit, then stand, and watch the heart rate, gave them the answer in minutes: high indication of POTS. Three years of “it’s probably anxiety,” resolved by one mom who refused to accept an explanation that didn’t quite fit. Moms ROCK.
It’s not always this hard to catch. Another client noticed her daughter feeling faint and dizzy every time she stood up or bent over. She saw a physician who tested early, a pediatric cardiologist. Same condition. Completely different timeline, because someone looked sooner.
That gap — between the family who caught it in months and the one who fought for three years, is the reason I’m writing this.
What Is POTS?
POTS stands for Postural Orthostatic Tachycardia Syndrome. A mouthful of a name for a condition that affects how the body regulates blood flow and heart rate when a person moves from lying or sitting to standing. According to the National Institutes of Health, people with POTS experience an abnormal spike in heart rate upon standing, along with symptoms like lightheadedness, fainting, and heart palpitations, because not enough blood is making its way back to the heart during that shift in position.
The symptom list is long and often confusing, which is part of why it’s so frequently missed. NIH’s National Institute of Neurological Disorders and Stroke and its News in Health resource both note that people with POTS may experience any combination of:
- Racing heart or heart palpitations upon standing
- Lightheadedness or dizziness when moving from sitting/lying to standing
- Fainting or near-fainting
- Reddish-purple discoloration in the feet or legs
- Shortness of breath
- Fatigue and weakness
- Headaches
- Digestive issues like nausea or constipation
- Brain fog or trouble concentrating
- Trouble sleeping
- Blurred vision
- Difficulty tolerating exercise
No single symptom confirms POTS on its own, which is exactly why it so often gets missed, misattributed, or dismissed for months or years before anyone connects the dots. It disproportionately affects women and often first appears in the teenage years, sometimes triggered by a viral illness or other physical stressor.
I’m not a doctor, and this isn’t meant to diagnose anything. But if any of this sounds familiar, for you or for your child, it may be worth bringing to a physician, ideally one experienced with autonomic or orthostatic conditions. Not all physicians treat POTS. Often, the ones who do are pediatric cardiologists.
The Real Pattern I See
I’m not sharing this because POTS itself is rare. It’s more common than most people realize. I’m sharing it because of a pattern I see constantly in my work, and POTS is just one example of it.
As the client in the first story put it to me:
“It’s eagle-eye observations, and it’s on the patient and their caregiver to know. Being thin, young, female, and a little anxious — doctors assume it’s just anxiety or poor nutrition, because they can never really piece it together.”
That’s the piece that stays with me. It wasn’t that her daughter’s symptoms were vague. Palpitations, weakness, nausea, brain fog. That is a real, specific pattern. It’s that she fit a profile-young, thin, female, anxious-that made it easy for one explanation to stick, and hard for anyone to look past it. Every symptom got filed under the same heading instead of examined on its own.
Almost every client I work with, whether it’s her own health or her child’s, says some version of the same thing: I knew something was off. It just took a long time to get past the most obvious explanation. It’s rarely about a provider not caring. It’s the reality of a fifteen-minute visit, a most-likely diagnosis, and no time to rule out everything else before the next patient. Meanwhile, the mom becomes the one cross-referencing symptoms at 11pm, requesting the actual test report, and pushing back when an explanation doesn’t quite add up. On top of everything else she’s already carrying!
If You Recognize This
If you’re reading this and thinking about your own health, or your child’s, and something has felt “off” for longer than it should have. Trust that. You don’t need a diagnosis in hand to take the next step. You just need someone willing to keep asking the question until you get a real answer.
That’s the work I do every day.
Sources:
NIH News in Health — Recognizing POTS
NINDS — Postural Tachycardia Syndrome (POTS)