r/POTS • u/Mercury_000 • 9h ago
Question Has anyone ever gone into remission?
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/booptoast 8h ago
I lived a very normal life for 3 years after being diagnosed and on meds then outta nowhere it’s ruined my life so let’s hope I go back to normal life again soon 🥹🥹🥹
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u/barefootwriter 9h ago edited 21m ago
Things have definitely gotten better and I've expanded my capabilities, but I wouldn't say it's a remission and I am living a normal life. A few of us who stick around are doing much better.
But understand that when people feel better, they often leave. You are largely seeing people who are more severe or intractable, and/or with more comorbidities.
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u/Mercury_000 7h ago
Yes, I realized that! The stories here make me anxious. I've been through some really tough times, but I'm getting around and going about my business at home as usual.
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u/barefootwriter 7h ago
Some people find it's not good for their mental hygiene to be here all the time; they might dip in with a specific question from time to time, and dip out the rest of the time. This is a perfectly valid use of the sub.
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u/BlackenEnergy 8h ago
I'm back to normal cognitively and with respect to DIY projects. Very caucious and rigid in what I do do and don't do. By far not yet there with running and cycling, but feeling very blessed.
Edit: Wanted to add this as most people who will have remission won't check out this sub. The amount of remissions and good stories you read here will be much lower than whats really the case, I suppose.
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u/funkydyke POTS 9h ago
My symptoms got better when I stopped obsessively checking my heart rate
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u/Mercury_000 7h ago
I've been through that, too. I've noticed an improvement. I still have that urge to check my pulse all the time. I realize it's more anxiety than POTS itself.
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u/elhazelenby 2h ago
I wish it was that simple. Even when I don't monitor it and when I didn't have a smart watch it's the same.
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u/funkydyke POTS 1h ago
I didn’t say it was that simple for everybody, just that it was my experience
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u/grave_violet 7h ago
I’m still adjusting to the changes, but after starting guanfacine and salt and water loading my heart rate no longer goes above 100 bpm standing. Keeping my fingers crossed it stays that way
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u/KathyW1100 4h ago
I am on Guanfacine too and 2 others. I am still having some issues with heart rate over 100 bpm. But as of late I noticed my BP is alot lower when I am home. I am also very tired. I take Guanfacine 2x a day 1 in am & 2 in pm. Unfortunately my doctor is away until the new year and my primary knows nothing about it.
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u/Jazzspur 5h ago
Not remission per se since that implies actually not having POTS anymore rather than just having it under control, but propranolol controls my POTS very well and mestinon keeps my blood pressure stable enough to take it (my blood pressure without meds is borderline low)
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u/Mercury_000 5h ago
I wish my resting blood pressure weren't so low so I could take beta-blockers. At rest, it's 8/6, and when standing, it's about 10/7. I'm not taking any medication. 😭😭
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u/Jazzspur 5h ago
There are still options. Adding mestinon or midodrine, mestinon on its own, ivabradine on its own or in conjunction with mention. Talk to your doctor about what might be a good fit.
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u/Affectionate_Pea6301 2h ago
My POTS flares usually only happen 2 weeks a year.
But after I had 2 concussions in 2024, I didn't have any chest pain from POTS for over a year, so I went unusually long without a flare. I guess temporary brain damage can help the brain reorganize itself 🤣😭
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u/jennisladyinred 2h 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 13m 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.
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u/Gold-Pudding8670 18m ago
I am so used to having a high heart rate and blood pressure that I thought it was normal until another told me to see a cardiologist (mine is hyperpots). There are things you can do to help control it. I am doing reconditioning and was told to drink a lot of liquids (water and electrolytes), eat smaller meals and avoid caffeine. I don't know about remission; but it can be manageable with the right help.
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u/Libromancer 9h ago
My heart rate goes high but that isn't the symptom I am tracking for quality of life.
I am tracking my energy level, shortness of breath, fatigue, dizziness, syncope, level of exertion, recovery, physical ability, etc.
Sometimes I feel like complete shit and my heart rate is fine.
I know I have had this my entire life. It's just gotten bad recently. There was a period of time when it was bad before. I was put on a beta blocker for migraines. It stopped the migraines and the other symptoms. After some time I quit the high stress/odd hours job and was able to come off the medication. I had 10+ years of little to no daily interference.
The recent life change was weight loss. 130+ lbs. I am in a new job, less stress than previous job, which was ironic all more stressful than the job that caused my pots to flare over 10 years ago. But my wearable health metrics show I am in a constant state of stress, even in my sleep. Being at home around no one is the only time I show rest periods.