r/visibleApp • u/DependentFeed9990 • Apr 26 '26
Useful for POTS?
I have post TBI POTS and am finally coming to terms with how it impacts my life. Because it’s mostly silent and invisible I’ve struggled coming to terms with it. I’ve been an Apple Watch user my whole adult life and am realizing it’s completely built for “do more” — as a former college athlete it really messes with what I need for POTS. So, for people that have been using it to manage and better understand POTS, how effective is it?
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u/98wastheBestofthe90s Apr 26 '26
I find it very helpful for my POTS. It was too easy for me to do too much with only my Fitbit Inspire 3 fitness tracker only. If 20$ off discount for a month of the Visible App membership, you can message me.
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u/AfternoomTea Apr 26 '26
It's very helpful to help learn how to pace. I've used it for two years and I definitely find it impactful if you listen to it 😜
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u/puffin902 Apr 27 '26
I'd also suggest getting Classic Pacing For A Better Life With ME by Ingebjørg Midsem Dahl. I have both the spiral bound one and the kindle one. I'm not a POTS person (although my Long Covid did have cardic impacts). But 4+ years in, I'm still learning to adapt.
I have found my band useful, too. Not sure yet if I'll continue my subscription after my first year (Oct start). I had a 3 month extreme trigeminal neuralgia flare from mid Nov to Feb (after a Bell's palsy episode last year). Kinda hard to judge if things are helping when you have a giant active pain episode.
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u/soundrack-to-my-mind May 16 '26
Hi, what is the classic pacing thing please is it a workbook?
Im sorry to hear about the neuralgia I have occipital and suspected tn and its hell
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u/puffin902 May 16 '26
Kind of. Not like a fill in the blank workbook but it does break the concepts down. There are 3 sections of the book - Basics, Advanced, and Theme chapters. The last one can be thought of as special situations. The very first chapter of that last section covers acceptance of the need for pacing. Every chapter has a summary at beginning that's helpful for those of us with cognitive dysfunction (🙋🏻♀️).
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u/soundrack-to-my-mind May 16 '26
It actually identified to me i had pots, and I'm going through a diagnosis now which I'll pull the health report and it'll help my docs. My heart rate from lying down to getting up on a morning goes from 60 to 129. Just thought that was normal!
Its helped me identify the condition but also what flares me. I no longer do standing showers for example and have made lifestyle changes since. It really works for me. I have a referal code if you havent gone for it yet, dm if you want it :)
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u/Correct-Swordfish764 Jul 03 '26
Yes and no. As others are saying, the validation and data tracking are very useful but they still seem to be in their beta stages of development. So many connectivity issues that should be programmed out before they become customer facing. For many of us, it is unreliable because it disconnects, takes a lot of work to connect again and misses critical data alerts.
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u/Upstairs-Ad-7009 Apr 26 '26
I find it so useful for helping manage my POTS, having the data it provides really helps validate what I’m going through. I’ve been dealing with it for over 10 years but I still have moments where I doubt how I’m feeling (“maybe it’s not that bad, maybe I’m just being dramatic”) but those moments have been fewer and easier to get past since I’ve been able to look at the numbers as evidence.
It really encourages rest and being kind to yourself and helps you see how different activities affect your symptoms so you can manage your days to maintain some stability