I think I have POTS; for the past 9 months I’ve been having issues with my heart rate being erratic and sometimes getting up to 130-160. It consistently jumps 30bpm+ as soon as I stand up, even though I’m currently on a beta blocker to help keep it from being so high; however my cardiologist won’t diagnose me with it because I’m “too young” and an increase of 30bpm isn’t high enough to be POTS, even though the internet says anything more than that is considered POTS. My question is, can POTS cause problems even when laying down or is there maybe something else going on as well? The last time I went to the ER it was because my heart rate suddenly spikes to 160+ out of nowhere (It was 11:30 at night and I was literally just laying down watching a cartoon, relaxing before bed so I’m pretty sure I wasn’t “just having a panic attack”. I’ve had a two week heart monitor test done plus an echocardiogram and I just keep being told that everything is fine. It’s so frustrating to live with this constant anxiety about my heart!
I’m sorry to hear you’re dealing with that, friend. And your cardiologist is talking shit. An increase in 30bpm upon standing is a well known and documented POTS response, and POTS is not age-related. I’d advise finding a new cardiologist if you’re able.
And yeah, my POTS affects me when I am laying down sometimes, especially if I’m having a hormonal flare. I have (suspected, hard to pin down during times of Covid) Hyperadrenergic POTS, and it tends to flare up at night when the body gets ready to dump a lot of chemicals like stress hormone and histamine as part of its natural circadian rhythm. This is also why sleep deprivation is really bad in general, but also really bad for folks with POTS/chronic illness cause your body isn't getting to hit the hard reset button on your body chemistry.
Elevating your legs during these flares and drinking electrolyte water and eating a salty snack can really help. Of course, check with your doctor over this if you’re able to get a competent opinion. But a lot of POTS is self-managed. Primarily because we get ignored and are under medicated. But if it helps to know, increasing water and salty snacks and using compression therapy, and elevating your legs during a flare can help reduce how often it happens. Dehydration and stress are major triggers for POTS, and getting that under control can drastically help your beta-blockers do the job they’re supposed to do.
But yeah, seek a second opinion. Your cardiologist is being profoundly unhelpful. Good luck, and I hope your heart behaves itself.
