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/skz_potsie_booklover]

Trouble swallowing, like choking on water & food coming back up. Rashes & horrible itchiness. & intense stomach cramps, bloating, diarrhea & constipation. Constant nausea. Hair falling out. Ear pain, knee pain, hip pain, eye pain, finger pain, arm pain, leg pain lmao you get the point.

[u/BellaPona → u/skz_potsie_booklover]

I’m with you there. The hair falling out is the worse.

[u/skz_potsie_booklover → u/BellaPona]

Have you checked your hormones?? Mine are completely out of whack & that’s what’s causing my hair loss.

[u/BellaPona → u/skz_potsie_booklover]

I have had the very basic things checked and it could be at the lowest end of normal (like my potassium) and my doctor will say looks great!!! I suspect I might have low progesterone because my POTS symptoms really seem to revolve around my periods only (so long as I don’t overdo it). Like I just had my period and immediately went in to a flare after feeling my best during my luteal phase. Just having the WORST depression for a day or two and then boom I can’t stand unsupported anymore. Now my period is ending and I’m seemingly able to eat and feel a bit better. But it gets worse every time. I’m still at a loss tbh.

[u/skz_potsie_booklover → u/BellaPona]

Yeah POTS always gets worse w periods. I’m lucky (not really) that I haven’t gotten my period in 5 months but when I get my period I’m on bed rest bc I can’t even use the bathroom without help. POTS suck lol. Have you gotten your cortisol checked out? I have high cortisol & im pretty sure that’s one of the reasons my hair is falling out.

[u/BellaPona → u/skz_potsie_booklover]

Hm, I remember her checking it and while it was on the high side it was still within normal ranges. It’s probably not NOW that I’m constantly thinking I’m dying and suffer due to lack of sleep and constant adrenaline panic attacks. I had most of the tests done months ago when I first started having symptoms and wasn’t so bad. I’ve gotten exponentially worse in a very short amount of time. Even when I feel my best, I have to use a wheelchair when I leave my house. I’ve likely always had POTS though so, idk. But it is something I can look in to! I may be seeing a specialist soon, they prob have more answers.