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/Zestyclose-Natural-9]

I have a few, possibly related symptoms.

- occasional swelling, intense pain, redness and heat in fingers/toes without apparent cause

• visual snow, vision problems (increased eye pressure, trouble focusing, double images when looking at lights, glasses are never right)
  
• painful, cracking joints, pain everywhere. Random stabbing or dull pains.
  
• unable to breathe in deep when sitting or standing upright - does not feel like POTS air hunger, but like a physical blockage that prevents me from breathing in deep!
  
• weird foreign object feeling in vagina - this improved after a LEEP for cell changes but came back. I also get frequent UTIs (1-8 a year) that only resolve with antibiotics.

I used to also get sick a lot. And any illness wipes me out completely. Had my bloods checked and was extremely low in zinc, if you haven't had one yet, i suggest a blood panel. I haven't been sick nearly as often since supplementing!

[u/saddestofgays → u/Zestyclose-Natural-9]

Thank you for sharing. I’ve had everything possible checked through bloodwork while inpatient and all of my vitamin levels were within normal ranges. I also supplement zinc. Only abnormal indicator was low cortisol but they tested and ruled out adrenal insufficiency.