First-hand account

My symptoms,
and how I handle them

Written honestly — what each symptom actually feels like, and the routines that took it from unmanageable to survivable. Flip any card below to see what works for me.

See the daily playbook
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Symptom by symptom

The front of each card is what it feels like. The back is what I do about it.

Daily Practice

What is always in my flare kit

Nothing exotic — just the handful of habits and items that stop a bad hour from becoming a bad week.

1

Insulated bottle already mixed with electrolytes, refilled the night before

2

Salt tablets in the bag I actually carry

3

Cooling towel and a small fan for heat days

4

Compression on before getting fully upright, not after

5

A folding seat or a known place to sit on any long outing

6

Heart rate on my wrist so I can see a spike before I feel it

7

A written symptom log so appointments aren't guesswork

This is one person's playbook

POTS varies enormously between people. Everything here comes from lived experience, not clinical training — use it as a starting point for conversations with your own care team, not as medical advice.

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