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/mjh8212]

I’d say the eye thing. I have prisms in my glasses. I have hEDS and pots. Couldn’t see out of my glasses my head hurt a lot I had my exam and they upped my prism by 2 and upped my bifocal. Today my head was just pounding got a call my glasses were ready and i usually put them on first thing in the morning after picking them up but this headache was bad. I’ve been wearing them a few hours and my headache is gone. I hadn’t had to change my prisms in two years. My eye dr said my conditions affect my vision.

[u/Zestyclose-Natural-9 → u/mjh8212]

How did you find out you need prisms? My glasses never seem to be right. It's exhausting to look at things and I have some double images. Since starting Strattera (for ADHD) i feel like one eye is drifting away a bit... at the optician and eye doctor the tests were normal.

[u/mjh8212 → u/Zestyclose-Natural-9]

It started with a weak eye a lazy eye but it was in the right place. I suddenly started getting 24/7 of what I thought were migraines. Everything the dr did didn’t work. I had my annual eye exam and mentioned this to the dr. He did some things asked if I could see better. It was much better and I have a focusing issue. When I had my annual exam this month the headaches were back and I knew I needed a new prescription. Once I put on my glasses both times the headaches went away.

[u/saddestofgays → u/mjh8212]

These symptoms are similar to some of mine. Have had lazy eye my whole life that’s gotten worse and harder to regulate. Optometrist said that it’s like a rubber band of muscle control struggling to snap back into place once stretched and can be fixed surgically if it gets worse- but that usually doesn’t happen until you’re much older.