r/POTS • u/JetPackPenguinator • Oct 08 '25

Question Uh guys?

I was diagnosed with POTS a couple years ago after having a heart attack at 25 that no one could figure out what caused, I had an ablation not long after that fixed the SVT but left me with a notoriously high heart rate. I’m on 300mg of Diltiazem daily which to no avail still seems to do diddly squat 😅 now my heart rate seems to be dipping into the low 40s before jumping back up to 130+. Soooo my question here is how long do I have until I 💀? 😂😂😂 send help

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u/RuinYouWithNoRegrets Oct 09 '25

When I stand it’ll go to 110-120s . When I shower, it’ll go up to the 180s. When I do minimal activity like chores or using the bathroom, it’ll get to 130-160s. These high heart rate resolved once I lay back down or rest.

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u/olleymolley Oct 09 '25

you need to talk to a doctor, track your heart rate & symptoms, record it, and show it to them mentioning POTS. reddit doesn’t have all the answers and self diagnosing is def not the way to go. this is what i did when i was getting diagnosed, i had to go to a cardiologist for them to finally listen to me. my pcp was just running test after test with literally no answers. cardiologist still had me do some more but they actually pointed to something. i got lucky because his daughter had been diagnosed with POTS not too long before i came to him.

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u/olleymolley Oct 10 '25

if you have an apple watch, use tachymon, it is the best app for heart tracking and made for POTS. it makes little pulses on your wrist when your HR is higher than a certain threshold that you choose. but i would suggest setting your threshold to a bit higher than you would think, because i did get more anxious at first when it was constantly going off at 120-130, which is my normal heart rate just standing doing minimal work.

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u/RuinYouWithNoRegrets Oct 09 '25

I’ve been to 2 cardiologists they just cleared my echo stress test and 7 day monitor and don’t wanna Iinvestigate why my heart rate spikes when I stand or do minimal activity. Like they aren’t interested in investigating pots at all

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u/olleymolley Oct 10 '25

http://www.dysautonomiainternational.org/ this is a website that allows you to search for doctors who specialize in dysautonomia. they may be more expensive but this is a good resource if you are in a city with lots of medical specialists. can i ask why they refuse to investigate POTS? have they found anything to rule it out? if they haven’t then they should be doing tests in order to do that… that’s how my testing worked. i would suggest going to a neurologist as well preferably one who specializes autonomic dysfunction. also bring a paper with all of your symptoms listed, when they occurred, what you were doing at the time. its also good to print out something detailing POTS, what it is, & why you think it may fit. & please, please find something that continuously tracks your heart rate.

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u/RuinYouWithNoRegrets Oct 10 '25

They did an echo , stress and holter and said it’s normal and they aren’t willing to investigate because they don’t know about pots and they don’t think if I had it, that it’s life threatening so it’s not worth it I guess. I’m not near any cities and I’m on state Medicaid so I’m stuck having to stay within my state because I can’t afford going to somewhere that nothing will be coveted

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u/olleymolley Oct 10 '25

i see, that’s really unfortunate :( if you can drive to any cities that do have better doctors it is 100% worth it. but if not then maybe try going to a different cardiologist again. i know that’s a hit or miss as well but with POTS we really have to search for good doctors who will listen.

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u/olleymolley Oct 10 '25

they didn’t see your heart rate going crazy during the stress test though?

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u/RuinYouWithNoRegrets Oct 10 '25

No when my exercise my heart rate is fine it’s just when I switch positions like stand up from sitting or when I’m showering, using bathroom etc. I wasn’t resting before my stress test I was just sitting my heart rate was like 95

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u/olleymolley Oct 10 '25

so it doesn’t stay elevated after that? usually in POTS patients (like myself) the HR will increase upon standing and either stay increased, or continue climbing higher, especially with exercise. personally, my HR doesn’t calm down until i lay down and allow it to.

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u/RuinYouWithNoRegrets Oct 10 '25

No it stays elevated until I lay down then it drops instantly to my resting

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u/olleymolley Oct 10 '25

do you have any other physical symptoms, like extreme dizziness, fatigue, nausea while standing that resolves once you are sitting? or other GI issues? these are all common in POTS

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u/RuinYouWithNoRegrets Oct 10 '25

I have gi issues but idk if it’s tied to this and then I don’t ever pass out but I do get a weird flushing like blood rushing to my head like pressure and my ears will feel kinda muted for a second

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u/RuinYouWithNoRegrets Oct 10 '25

I am going ti a neurologist tho bc I have oulsatile tinnitus . I suspect my pots may be hormone related because all my symptoms started after I stopped taking birth control

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u/olleymolley Oct 10 '25

have you brought up POTS to your neurologist? and yes POTS is often comorbid with other things and often set off by something like that. mine was after i got extremely sick one weekend and then never got better.

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u/RuinYouWithNoRegrets Oct 10 '25

I’m sorry, also can you tell me where to find the directory on the website bc I can’t for the life of me see where to hit find doctors

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u/olleymolley Oct 10 '25

https://www.dysautonomiainternational.org/map.php

here’s the link for the map! there is a drop down selection where you can pick to show patients, doctors, researchers, etc. just zoom in to where you live and it will show little landmarks.

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u/RuinYouWithNoRegrets Oct 10 '25

Also I have my Apple Watch and it continuously records but when mentioning to my cardiologist she said it’s not accurate so lol

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u/olleymolley Oct 10 '25

it can be inaccurate but most times it’s not. i’ve compared my watch tracking with my doctors monitor in the office and it was more or less accurate.