#my cardiologist said it wasn't a problem but I'm not convinced it's nothing

[peachdoxie]

Because I cannot get a break this week, tonight my tinnitus is being extremely loud and I can't sleep because of it. Fuck off, heartbeat.

[potstism]

asking the disabled community: what should i say or tell to my cardiologist? [LONG POST; SEEKING ADVICE]

reposting from my own reddit account on the r/POTS sub yesterday in order to achieve more reach!

hello to all. i hope you had a wonderful holiday season. my christmas day was less than perfect because i felt nauseous and had to spend a few hours lying down, but it wasn't the worst i've ever experienced to the point of absolute misery and it was worth the gifts i got that i'd been wanting (or at least i want to believe so).

i've discussed before how i constantly have a very high heart rate and it seems like that's been evermore present lately. it's not uncomfortable per se but it does drive me crazy, it's like being excited/anxious to the extreme except i'm neither, rather quite calm, but my physical response wouldn't lead you to believe that.

in addition to this, i had been complaining to my caretakers that i always (genuinely) feel like i'm on the verge of vomitting despite knowing i probably wouldn't, but i've come to realize that my vocabulary doesn't match what i'm trying to describe because i don't know how to explain it well ─ this could be due to neurodivergency, or just the fact that i am medically uneducated and only know as much info as your average person. it's not that i'm actually sick with something as much as that a number of internal factors are making my body act like it's sick and simply imitating symptoms, if that makes sense. it seems to me like this will be managable and/or hopefully preventable once i can put a name to what's going on, but the problem (and frankly whole point of this paragraph) is i'm having trouble finding those words. i believe, from my limited understanding, that the suspects are related to postural, orthostatic, and/or tachycardial origins, which should be self-explanatory.

now onto the main purpose of this post. i had a stress test done last monday, wherein my heart's response to increasing levels of walking on a treadmill was recorded, and that was also done while i was sitting down before even getting on. the nurse/assistant (or whomever i was being led by) said that my heartrate per minute was between the 90s-110s at first while resting, and then when i got on to start walking it got up to the high 120s. i had to stop halfway through the second level (4.5 minutes total) because i'm quite weak and unfit for intense exercise, in which i went to go sit back down and the numbers didn't really change until i was encouraged to take deep breaths; then it went back down to around 115. i was given a goldfish crackers snack and some apple juice to recover, and when i threw away my trash apparently i went back up to 120.

the results of the test were sent off to be read by my new cardiologist (whom i've only seen once directly so far) and today he said everything looks good... which does not add up, especially after the woman who was there with me (notably not a doctor or credible source of authority) remarked that it looked like POTS to her when i hadn't even brought it up initially. i'm thinking perhaps he [cardiologist] simply glanced over at it while on vacation without putting in much work, but either way this can't be right. maybe my heart, the organ itself, is healthy, but something is clearly going on that's making it work harder than usual and therefore affecting my quality of life in a negative way.

i've been seeking either a diagnosis of POTS or otherwise some form of answer & solution to my ailment, and i'm wondering if there's something i should say to get the ball rolling in my favor ─ if so, should there be a certain tone? should i use my mother as an advocate, since that's often necessary in order to convince a doctor to listen and carefully consider what the patient is suggesting? (i would also like to send these sources from a POTSie activist to him, the same person, that i had shared here before too.) if he insists that there is nothing abnormal, should i seek a second opinion, and if so are there any recommendations from this community that i can look into? i'm happy to be redirected anywhere that may help out, so thanks in advance!