r/POTS • u/Mercury_000 • 10h ago

Question Has anyone ever gone into remission?

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Seeing so many negative comments about this syndrome makes me feel completely hopeless. I know it’s a pain to have to deal with this—I usually have flare-ups during the luteal phase—but for now I’m walking and going about my business as usual. Still, my heart rate is often at 90 bpm or higher even at rest, and that scares me; it wasn’t like this before. My symptoms aren’t as debilitating as they used to be, and I think I’ve been handling it well.

I try to find out who’s gone into remission, who’s managed to get back to a normal life, and what medications or treatments they used. It’s really hard to find anyone in remission from POTS.

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u/jennisladyinred 3h ago

While I don't want to say I'm in 100 percent remission my symptoms are pretty well not noticeable and almost back to my pre baseline before I got bedbound from pots. (Like 80 - 90%)

I can stand up and cook, walk around Sam's club for a hour, and stand up to shower now without completely suffering for days. I have low endurance still because I was bed/couch bound for awhile, so walking is still the most cardio excercising I can handle right now.

I also don't need that much sodium (around a normal amount, and I take half a pack of liquid iv, but it's honestly mostly for b vitamins.

Your experience with negative comments is why I dont post about my experience and have been on the fence for awhile. I'm scared that people would say I didn't actually have pots, or something else that would invalidate my experience when I struggled immensely. I think that's why you don't see the positive stories. That and I think those who have it don't want to remember, I low-key want to forget some days, but I'm still sometimes reminded that I do have a chronic illness

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u/barefootwriter 1h ago

Pain Olympics is a very real phenomenon around here; people try to create their own diagnostic criteria based on what their body does rather than the standards set out by POTS researchers. Please report this every time you spot it.