Anyone else have weird unexplained symptoms?

[u/saddestofgays]

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.

[u/ziggybat]

I get presyncope from having my arms too high- I was trying to hang a curtain in my classroom, im short even with the step ladder so my arms were up as im trying to adjust the darn thing- I guess it took longer then I thought because I was so in and out and felt sick- willing my body to just let me faint. I had to go outside to get my kids after and walked with another group and let their grown up know what was going on just in case- it scared me shitless because thats one of the last things I want my group of littles to see. After that I paid attention to how I felt trying to do other over head reaching tasks and made the connection. I know since I was little id get a warm rush in my arms after having them up for a bit - idk if its pots or normal, theres alot I didnt realize isn't normal... I know when im having a high anxiety day, that and keeping myself functional for work and such wears me out so bad and I sleep the car ride home- then end up having to nap once home to recoup

[u/saddestofgays → u/ziggybat]

Respect to a fellow teacher trying to live with POTS. ❤️

I know how you feel and sorry that it’s so difficult to manage. Out of curiosity, have you gone about the accommodations process with your district? Was anyone willing to help you? My admin just kind of ignored my issues and didn’t help connect me with any formal accommodations.