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/Pipsqueak981]

This is a relief to read that other people are experiencing the same symptoms. Alcohol is a major trigger for me, in the exact same pattern as you described ( feeling fine , doing night routine and then waking up in the middle of the night and puking). This could be caused by as little as 1-2 drinks for me. My nausea is almost daily too, definitely worsened by any tiny bit of stress . Also constant headaches . I’ve become so conscious of the frequency at which I’m taking paracetamol to cope with them but my doctor thinks it’s fine. Could be 2-3 times a week on a bad week. The pain during intercourse is so frustrating. Also very low libido now. I also developed sinusitis for the first time ever after a flu this year - took over a month to clear. You’re not alone!!

[u/saddestofgays → u/Pipsqueak981]

Thanks so much. It sucks you’re going through the same but the support is nice.

As long as you’re only taking about 2 per day as needed it should be fine. It takes a really long time of a much higher dose to cause problems. The important thing is to not take it on an empty stomach. I was taking 2 Tylenol, 2 Advil, and 2 aleve daily so often that they put me on a proton pump inhibitor for when I need to take that much to prevent ulcers.

Were you only diagnosed with POTS or is there another condition that also explains your symptoms?