u/Dismal_Chemistry_434

I’m curious what, if any, other heart/neurological/health issues have you ever heard of being misdiagnosed as POTS/dysautonomia — or alternately what issues have you heard of being masked temporarily or going undiagnosed longer because the person already was diagnosed with POTS/dysautonomia and the new symptoms of the new issues were at first assumed by the patient and even more importantly doctors to just be POTS/dysautonomia related?

Personally so far in my 5+ years as a middle aged man diagnosed with newly arising POTS/dysautonomia and no other really connected issues with a clear diagnosis (except suspected long COVID but even then I have a pretty unusual presentation of that with minimal ME/CFS, mainly just POTS and newly developed respiratory allergies and maybe worsened GERD though not even sure how much worse it is vs. more acknowledged) , anyway in my experience with POTS/dysautonomia the nature of my orthostatic symptoms change SO OFTEN, usually cycling, other times totally new ones cropping up or others disappearing seemingly forever or long term, it’s hard to really know which signals from your body to pay attention to any more LOL. I tend to assume everything is just POTS/dysautonomia!

I’ve seen one detailed account on Reddit of someone being misdiagnosed with POTS for years when they had hypertrophic cardiomyopathy, but literally only one account and I don’t have any evidence that is anything but extremely rare.

I’m curious what, if any, other heart/neurological/health issues have you ever heard of being misdiagnosed as POTS/dysautonomia — or alternately what issues have you heard of being masked temporarily or going undiagnosed longer because the person already was diagnosed with POTS/dysautonomia and the new symptoms of the new issues were at first assumed by the patient and even more importantly doctors to just be POTS/dysautonomia related?

Personally so far in my 5+ years as a middle aged man diagnosed with newly arising POTS/dysautonomia and no other really connected issues with a clear diagnosis (except suspected long COVID but even then I have a pretty unusual presentation of that with minimal ME/CFS, mainly just POTS and newly developed respiratory allergies and maybe worsened GERD though not even sure how much worse it is vs. more acknowledged) , anyway in my experience with POTS/dysautonomia the nature of my orthostatic symptoms change SO OFTEN, usually cycling, other times totally new ones cropping up or others disappearing seemingly forever or long term, it’s hard to really know which signals from your body to pay attention to any more LOL. I tend to assume everything is just POTS/dysautonomia!

I’ve seen one detailed account on this sub of someone being misdiagnosed with POTS for years when they had hypertrophic cardiomyopathy, but literally only one account and I don’t have any evidence that is anything but extremely rare.

Before I was in my early 40s I had minimal allergy issues, mainly respiratory reactions to MAJOR dust exposures. After a lower respiratory infection/chest-cold-like illness in early 2020 (maybe first wave COVID, it was before testing was available, maybe something else, but I also had a major worsening in some POTS-like symptoms and GERD) I’ve had seasonal respiratory allergies for about 3/4 of the year. I’ve only had blood allergy testing because of use of beta blockers for POTS-like problems that interferes with skin testing due to them counteracting epinephrine if there is an emergency. My ANA has consistently been sky high for many years now too but rheumatologists don’t want to touch me with a 10 foot pole for some reason.

Anyway on doctor’s advice I have taken Zyrtec and then Xyzal basically for a large portion of the period since early to mid 2021, and I specifically took Xyzal a lot of the time between June 2024 and October or November 2025. But I got off it last autumn when my allergies tend to ebb, and also realized that even though I thought Xyzal was less fatiguing than Zyrtec, still it was making me tired and that I had a lot more energy without it, and decided I would try not to take it again if I could.

Fast forward to April and the pollen coming on and I have been having a lot of weird issues with a tight chest and breathing issues that I think might be allergic asthma as other theoreis about what it might be haven’t panned out when I tried to address them, so after no relief from Claritin I decided to try Xyzal again….and it worked for those issues to a large degree BUT I took it in mid-afternoon yesterday and I was knocked out hours earlier than I usually go to sleep and now have been drowsy all day today plus having horrific flu-like intense joint and muscle aches, plus chills, plus despite being on a mix of Ibuprofen and Tylenol for the body aches my temperature has registered as high as 100.1 and generally around 99 — and my temperature is almost never above 98.0, usually lower -- regular healthy range for me is like 96.8-97.8 usually, and I don’t know if I have seen it above 98 in like 5 years, not with COVID or flu-type illnesses or anything else…

I guess it could BE the allergies…or an actual illness, but the timing is coincidental…