u/oguzhankayan

Quick context. I have hypertrophic cardiomyopathy, which often comes with paroxysmal afib as a side complication. Mine kicks in maybe once or twice a month, usually triggered by alcohol or poor sleep. Cardiologist tracks it via Holter monitor every year but the in-between is on me to log.

I tried using the Apple Watch ECG plus notes apps for a while, but reconciling the two for cardiology visits was a hassle. Built a small iOS app for myself that handles symptom logging (afib episodes, chest tightness, presyncope, the usual list), meds, and exportable summaries for appointments.

It's HCM-focused so the wider context is built around that, but the afib tracking and trigger correlation might be useful for others here too. Free, no signup, on the app store as HCM Companion. Cardiologist collab in progress for procedure and medication content.

Not pushing anyone to use it, just figured this sub gets the "tracking the in-between" problem better than most.

Question for the sub: how do you all log triggers? I keep going back and forth on whether alcohol is really my trigger or if it's just correlation, and I can't seem to keep clean enough data to be sure.

Bearable is great and I still recommend it to friends with anything from fibro to long covid. But for my specific condition (hypertrophic cardiomyopathy, a genetic heart muscle disorder) it never quite fit. The symptoms list didn't capture what I actually needed to track. There was no way to log echo measurements over time. Heart-specific medication info wasn't there.

After enough frustration I ended up building my own. It's iOS only for now, free, no ads, no signup wall. Called HCM Companion. Logs symptoms, tracks meds, exports a clean summary for cardiology appointments.

My own cardiologist recently agreed to help expand the educational side, so HCM-specific procedure and medication content is being added gradually. Worth saying clearly: if you don't have HCM, this isn't the right tracker for you. Bearable, Chronic Insights, or CareClinic will serve you much better.

I'm sharing here because some of you might know someone with HCM, or have a relative who does (it's genetic, runs in families), and getting the word out to the right people is genuinely hard for rare-ish conditions. Curious what other condition-specific trackers people use vs. general ones. Always interested in seeing what works for niches.

not strictly heart attack but i think the underlying problem is the same for a lot of us in heart-stuff subs. wanted to ask how people here actually manage the in-between.

i have HCM (hypertrophic cardiomyopathy). genetic, thick heart muscle, the whole package. see my cardiologist every 6 months. and every single time i sit down across from him i blank on half the things i wanted to bring up. did the chest tightness happen 3 times this month or 6? was it after exercise or random? did the new med dose change anything?

for a long time i just used the iphone notes app. it was a mess. then a paper journal, which i stopped filling out after 2 weeks. then a spreadsheet, which my wife correctly pointed out was insane.

eventually i got tired of it and just built a small app for myself. symptom logger, meds list, appointment notes, exportable summary i can show my doctor. nothing fancy. it’s on the app store as HCM Companion if anyone with HCM specifically wants to try it, free and no signup. but honestly more curious how the rest of you handle this.

do you use a notes app? a paper diary? something like bearable? a smartwatch? do you actually remember to log when symptoms happen, or is it always retroactive? does your cardiologist ever look at the data or do they just nod politely?

genuinely interested. i feel like the time between appointments is where most of the real disease management happens and nobody talks about it.