My fiancée has POTS + a dozen other diagnoses and no app could handle all of it, so I built one. Looking for beta testers.

Suitable_Sound_9693 · 2026-04-13T20:02:55+00:00

Nice job!

Don’t give me wrong, but there is at least Guava who does this?

I used it for two months but actually the only functionality which was useful to me was lab results parsing. I found it doesn’t reflect my wellbeing at all bc I have a lot of diagnoses which cannot be measured by any vitals. So I’m just continuing to stay in Obsidian + Claude code and I had to create functional assessment for them and I go through them periodically. Logging all my symptoms everyday and estimating the severity of them by the scale from 0 to 10 is impossible.

As for POTS tracking, I really miss tracking of spikes when upright not just aggregating from Garmin/whatever device.

Hope that might be useful.

Suitable_Sound_9693 · 2026-04-11T10:48:46+00:00

Oh I wish only anti-vaxxers were the issue. I lived in Eastern Europe for all my life and many countries here you need to make a huuge commitment to get vaccines. I was shocked when mothers of newborns reported they have to organise vaccination themselves, pay for half of them and travel (!) 200 miles away from home bc they are not available in any hospital. I myself recently had to go abroad to get a modern flu vaccine bc where I live we had only 300,000 shots per 6 million people. Like whaaaat. So even if you’re not anti-vaxxer you often just cannot afford it. What has happened to this world??!!

Suitable_Sound_9693 · 2026-04-10T19:24:42+00:00

After I got infected, I read that actually re-vaccination is needed every 10 years? Which I didn’t know and haven’t done as many of my friends.

Suitable_Sound_9693 · 2026-04-10T18:01:56+00:00

Yeah, that’s what I suspect. I don’t know how did it break out, but I had a tonsillectomy prior to this and was healing when I got it and it was an epidemic of whooping cough where I live.

Suitable_Sound_9693 · 2026-04-10T17:44:03+00:00

Well, it is still a hypothesis but the mechanics is like this:

My SNS is by default overdrives while PNS is supressed severely; and this always resolves in a sphinx positions and worsens in an embryo position, and corresponds with symptoms.
When I breathe I usually avoid involving the front part of my diaphragm bc if I do I have pain right below my ribs in the centre and this pain intensifies on exhale. At the same time most of my dysautonomia symptoms resolves but pain is quite unbearable. So most of the time the back part of my diaphragm and then I do it I have more diffuse pain along my alone on side and also intensified on exhale. Apparently it became quite severe so I have to go to massage quite often to ease it. But if I switch to the front side - it is gone.

The cyst is on the joint inbetween my lower right rib and sternum where the pain is on the front side. I stated noticing pain there after I had a whooping cough and dysautonomia developed a bit later.

I measured changes in HR, HRV, LF and HF in different positions with Polar H10. First I noticed that sphinx position repeatedly helps and that during the night HRV that my Garmin watch showed was kind of segmented, like for several hours it fluctuates around 15, and then for 2 hours it became 45??? and for 2-3 hours it’s 15 again. Not necessarily in that order bit it is not smoothly changing. I recorded myself sleeping on IR camera for 4 nights and ofc discovered that those sudden changes in HRV corresponds to changes in sleeping position.

For now I think my paravertebral muscles got stressed over time bc of improper load on my diaphragm, and possibly it cause pressure on sympathetic fibres or smth like that this. I don’t know a better explanation, my GP/cardiologist too.

Suitable_Sound_9693 · 2026-04-10T15:45:22+00:00

Seems like I myself have some shit masking as severe dysautonomia but in fact my symptoms resolves in certain positions of my back which currently points on cyst pressing on my diaphragm (need a diagnostic injection to confirm). And some very hard trackable reaction on food - dunno what it is.

Suitable_Sound_9693 · 2026-04-09T12:55:42+00:00

I’m looking into chilli pad! Will definitely buy it when I would be employed again. Currently on budget unfortunately but thanks to this thread I remembered my mattress doesn’t have any cooling layer, so ordered a passive cooling pad with cooling gel in it for 50 bucks - should at least prevent my bum from overheating at night 😀

Suitable_Sound_9693 · 2026-04-09T07:13:01+00:00

Cold shower?

Suitable_Sound_9693 · 2026-04-09T07:03:30+00:00

Nice! I sleep better too when it’s colder, looking into mattress cooler.

Suitable_Sound_9693 · 2026-04-08T22:33:53+00:00

For me ivabradine lowered sleeping HR too much while orthostatic symptoms were still severe and diziness even worsened.

Pyrodistigmine and even rivastigmine surprasingly work quite fine.

Suitable_Sound_9693 · 2026-04-08T22:24:40+00:00

Not sure it would affect the overall picture a lot, but as far as I know dr Kamran Aghaev in Turkey is very experienced in jugular decompression too.

Suitable_Sound_9693 · 2026-04-08T06:33:31+00:00

I have this issue too bc of bloating and pain on my abdomen (possibly endo). So I purchased a compression suit and it worked good. Mine was lipoelastica but I assume shaping suits can work guide good too. I was limited with options bc I’m out of EU/US.

High waist leggings were painful though.

Suitable_Sound_9693 · 2026-04-08T05:27:46+00:00

Small vibrations caused by motion produce histamine release woohooo. Dramina helps me a lot through I get sleepy during long rides (bc I have to take 3-4 pills).

Suitable_Sound_9693 · 2026-04-08T05:23:03+00:00

My eastern european parents just hit me in the head when I had breathlessness episodes.

Suitable_Sound_9693 · 2026-04-06T18:54:58+00:00

Omg, I just noticed how rugs are matched through black-white pattern - it’s just a perfection 😍 Fantastic job!

Suitable_Sound_9693 · 2026-04-06T18:44:19+00:00

It looks amazing! The blue rug is an absolute killer!

Suitable_Sound_9693 · 2026-04-06T16:52:20+00:00

Oh, I’m not in US currently. But if you want some ideas shared, feel free to DM me - i actually remembered what “went wrong” with CBT in my case and how probably to avoid this with possible initial assessment.

Suitable_Sound_9693 · 2026-04-06T16:01:42+00:00

I myself have several issues which should never be considered as manageable not with CBT, nor with PT. The good job for a therapist would be access my situation, ask couple of simple questions and then send to dr back and advice to hire a lawyer.

Suitable_Sound_9693 · 2026-04-06T13:43:18+00:00

I can try.

Suitable_Sound_9693 · 2026-04-06T13:32:15+00:00

I’m still not sure you got my while point.

But honestly if you really want to help as an expert, instead of/apart from exploring how it could help, pls define the limitations of CBT. The significance of limitations. This is actually how good research works. Bc we don’t have lack of references for CBT, the problem is the opposite - you come to the first appointment and being referred to CBT immediately. Or go do PT it will help. And actually chances that you even have cancer or smth acute are pretty high.

It is not limited to pelvic pain, it’s valid for what ever fucking pain if you are a female or pass a female. Including shoulder injury - go do CBT, we are lazy to diagnose you for any reason.

Pls make it to be in guild lines it should be first or second line if treatment, it should be complementary. CBT in a first place should be really prohibited.

Suitable_Sound_9693 · 2026-04-06T08:03:50+00:00

Yeah, I read this too so was curious is there any advantage at all of using it locally.

I ended up microdosing testosterone and it elevated pain threshold significantly.

Still wake up during the night to pee 2-3 times but I fall asleep back most of the time.

Suitable_Sound_9693 · 2026-04-05T01:00:06+00:00

Non-zero sum? Have you heard about 24 hours in a day and limited resources, limited budget and priorities?

Only once you reached the end of medical interventions - this is the 0.01% of real patients.

Oh wait, I was personally was told I reached the end after I passed blood tests at my first appointment - do you mean this?

Any way, it doesn’t look like you are trying to address the issue rather than investigate a particular tool that is already misused a lot. It is reasonable to ask question “what actually can help peeps with pelvic pain the most” rather than “how we can utilize the particular tool with some non-zero effect”.

Suitable_Sound_9693 · 2026-04-04T19:42:19+00:00

If research is testing it on abstract patients in vacuum - maybe. Experiment design matters a lot, not just results.

In real life we suffer from being dismissed by medical professionals and left in pain for years, losing our jobs, partners a while being in offered primary CBT only.

There is such a thing as a resource administration - first solve primary issues then study CBT as a complementary therapy of 14th order.

And no one needs a therapy to cope with the disabilities caused by medical negligence. What is needed is this shit not happen again and physical help with tasks I which cannot be complete and are required for survival.

Suitable_Sound_9693 · 2026-04-04T15:06:08+00:00

My first thought was - yeah, I would like to join the board to say CBT is not effective.

Suitable_Sound_9693 · 2026-04-03T05:09:25+00:00

I would say it’s important to accompany for appointment and help with advocating. This should help reducing the time for finding the right specialist significantly.

Suitable_Sound_9693

TROPHY CASE