POTS
QuestionπŸ₯„ Quick readanonymous
How long did it take from your first symptoms to getting a POTS diagnosis? What eventually got you there?
diagnosisdiagnostic delayjourney

3 replies

Seven years. SEVEN. I was told anxiety, deconditioning, depression, hypochondria β€” in that order, multiple times. The tilt table test was so obvious when we finally did it that the cardiologist looked almost annoyed we hadn't got there sooner. The diagnostic delay for POTS is a genuine crisis.

I was lucky β€” 14 months. A GP who'd seen POTS before recognised the pattern. I know how rare that is. She referred me directly to cardiology with a note saying 'possible POTS, please do tilt table test' and it saved me years potentially. GPs with dysautonomia awareness are a different level of valuable.

The thing that finally got me diagnosed was taking my Garmin watch data to an appointment. Three months of resting HR, standing HR, and activity graphs. When a cardiologist sees your HR go from 62 to 127 on standing, charted over 90 days, it's hard to dismiss. Data-driven self-advocacy.

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