How to keep a POTS symptom diary
A useful POTS symptom diary records the same few things every day at roughly the same time: which symptoms appeared, how bad they were on a consistent scale, what you were doing beforehand, and anything unusual about the day. Consistency over several weeks matters far more than detail on any single day.
What to record every day
Keep the daily entry small enough that you will still do it on a bad day. Four or five fields is usually the right size.
- Which symptoms occurred, chosen from a fixed list rather than free text, so entries can be counted later.
- Severity, on the same scale every time.
- Time of day the worst symptoms hit — morning-heavy days and evening-heavy days look very different to a clinician.
- Context: sleep, heat, activity, illness, cycle phase, or anything else out of the ordinary.
- Whether you kept to the routine your clinician set with you, including intake targets and medications, recorded as met or not met rather than as amounts you invented for yourself.
Free-text notes are still worth keeping, but treat them as an addition to the structured fields, not a replacement. A month of paragraphs is very hard to summarise; a month of consistent ratings is not.
How to rate severity so entries stay comparable
Pick one scale and define its endpoints in writing before you start. The scale itself matters less than never changing it mid-diary.
A common approach is a short numeric scale where the low end means "noticed it, carried on normally" and the high end means "had to stop what I was doing". Write those anchors down and re-read them occasionally, because severity ratings drift: as symptoms become routine, people unconsciously start scoring the same experience lower. If you suspect drift, note it rather than retroactively editing old entries.
Symptom categories worth separating
Lumping everything into "bad day" throws away the signal. Splitting entries into a handful of categories lets a pattern show up in one category while the others stay flat.
| Category | Examples people commonly log | Detail worth capturing |
|---|---|---|
| Orthostatic | Lightheadedness, greying vision, feeling faint on standing | Posture and how long you had been upright |
| Cardiac sensations | Palpitations, pounding or racing heartbeat, chest discomfort | What you were doing when it started |
| Cognitive | Brain fog, word-finding trouble, difficulty concentrating | Whether it tracked with fatigue or stood alone |
| Energy | Fatigue, post-exertion crashes | Any exertion in the preceding day or two |
| Gastrointestinal | Nausea, early fullness, appetite changes | Timing relative to meals |
| Thermoregulatory | Heat intolerance, flushing, sweating changes | Ambient temperature and humidity |
These are categories people commonly track, not a diagnostic checklist. Which ones are relevant to you, and what they mean, is for your clinician to decide.
How often to log without burning out
Once a day, at a fixed time, is enough for most patterns. Add a second entry only when something notable happens — a flare, a new symptom, or an unusual exposure — and keep it short.
Diaries fail from ambition, not from lack of it. If you find yourself skipping days because the entry is too long, cut fields until you are logging reliably again. A sparse but complete four weeks beats a detailed but half-finished twelve.
Mistakes that make a diary unusable
- Backfilling from memory. Recall bends toward the worst days. If you missed a day, mark it missed.
- Changing the scale or the symptom list mid-stream. Nothing before the change stays comparable to anything after it.
- Logging only bad days. Without the ordinary days there is no baseline, and every summary looks alarming.
- Recording conclusions instead of observations. "Flare from too little salt" is a guess; "flare, hot day, poor sleep, missed the afternoon routine" is data.
- Mixing in numbers you did not measure. Estimated readings are worse than no readings.
Turning the diary into something your clinician can read
Bring a summary, not the raw log. Clinic time is short, and a stack of daily entries usually goes unread.
A workable summary covers the period, how many days you logged, the symptoms that appeared most often, roughly how severity moved over the period, the days that stood out and why, and anything that changed mid-period such as a new medication or a heat wave. Keep the raw entries available in case you are asked, but lead with the one-page version. Interpretation — including whether a pattern means anything clinically — belongs to your clinician, not to the diary.
Upright is built around this workflow: fixed symptom categories, a consistent severity scale, standing-test history, and a doctor-ready PDF generated on your phone. See also POTS triggers and flares: what to log and how to prepare for a POTS doctor appointment.
Track it in Upright
Upright keeps your symptom log, standing tests, intake, and medications in one private, local-first app and exports a doctor-ready PDF. Learn more about Upright.