The diagnosis guide
Most POTS patients wait four to six years before they get a name for what's wrong. This guide is about why — and about what patients can do to move a diagnosis forward.
This page is being finalized for review. The complete guide covers: what it feels like to be undiagnosed; why primary care misses POTS so consistently; the 77% problem (being told it's psychiatric); the active stand test and the tilt table test; how to prepare for a specialist appointment; what to bring, what to ask, what to push back on; finding a clinician who knows POTS; and what to do when insurance doesn't cover the specialists who do.
Expected publication: end of next week.
4.7 years
Average time to diagnosis
From symptom onset to a confirmed POTS diagnosis. Many patients see 7+ specialists before getting an answer.
Source: Shaw et al., J Intern Med, 2019
77%
Initially told symptoms are psychiatric
More than three in four POTS patients report being told their symptoms are caused by anxiety or depression before receiving a POTS diagnosis.
Source: Dysautonomia International Patient Survey, 2020
1–3M
Estimated U.S. patients
POTS is not rare. Prevalence estimates range from 1 to 3 million Americans, with onset most common in adolescents and young adults.
Source: Vernino et al., Autonomic Neuroscience, 2021
5:1
Female-to-male ratio
POTS disproportionately affects women, contributing to the pattern of symptoms being dismissed as psychosomatic.
Source: Sheldon et al., Heart Rhythm, 2015
Also see: What is POTS? for the medical background, and our articles for shorter pieces on specific parts of the diagnosis path.