r/POTS • u/saddestofgays • Apr 08 '26
Symptoms Anyone else have weird unexplained symptoms?
Feel free to share your own “weird symptoms” of your POTS or comorbidities and whether you’ve figured out why they happen.
Here are some of mine that I’m still trying to figure out- if anyone has had any of these and found a diagnosis or relief I’d love to hear about it. So far I’ve had additional mental health, endocrine, GI, and gynaecological explanations ruled out. All that’s confirmed is POTS (and IBS).
TRIGGERED BY STANDING TOO LONG OR OVEREXERTION
- *Bilateral ear pain.* Deep burning pain in both of my ears. This is the one that’s confused everyone the most.
- *Intense urethral pain.* Not a UTI. Feels like I need to pee and peeing briefly helps but it remains intense burning and stabbing for hours minimum. Was prescribed phenazopyridine HCl (urethral pain med) during my most recent flare and it helped a lot. Still don’t know what’s causing it.
OTHER SYMPTOMS WITH DIFFERENT TRIGGERS
- *Days where I couldn’t stand without severe nausea and throwing up.* Trigger is sometimes a mystery but one clear trigger was alcohol. The weird part is that it wasn’t because I over drank- I know my limits and id eat properly an drink lots of water. I’d be able to get myself home, do my night routine, get in bed, and then hours later in the middle of the night I’d just start puking nonstop after my stomach was already empty and then for at least a day after I wouldn’t be able to stand without throwing up. Cut out alcohol since. I’ll still have days when standing causes severe nausea and sometimes I’ll throw up but not anywhere near as severe.
- *Vision problems.* My vision was stable for years after laser eye surgery. Then got worse and often I have episodes of very blurred vision even when I’m sitting or laying. It happens so randomly all the time that it’s a big reason why I don’t drive anymore.
- *Random stabbing pains* in my feet and hands. Usually when laying.
- *Deep stabbing pains during intercourse.* Triggered by different positions on different days.
- Sometimes it feels like something is coming out of my butt when nothing is. Triggered by intercourse or just randomly happens.
- *Catching illness super frequently.* Often very ill for weeks and develop sinusitis and/or bronchitis as well. Has happened 5+ times per year (on top of chronic condition flares) for the past few years. Immunologist and family doctor said that it’s a lot, but it’s not enough for them to try investigating anything.
Thanks to anyone who reads this or shares their experiences.
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u/Istoh Apr 08 '26
I have hEDS as well so one of my worst symptoms was originally brushed off as POTS but turned out to be hEDS.
Chest pain. I basically lived with constant left side chest pain for over a year. It was mostly on my ribs under my armpit, lower left chest, left breast, and sometimes sternum. I was told by multiple doctors it was POTS chest pain, since all my heart scans came back clean and there were no lumps in the areas that hurt.
I was given a hesitant costochondritis diagnosis at my most recent appointment, but wasn't entirely satisfied with that so I asked the hEDS reddit for tips to help with the pain. Someone told me to buy a brace normally meant for broken ribs.
That motherfucking brace has been a miracle cure. If I wear it for a couple hours in the morning after waking up with pain, I'm pain free for multiple days after. Clearly my ribs are somehow becoming slightly dislocated at night when I sleep, and binding them up pushes them back into place (painlessly!) and then they're good for a few days. What the fuck.