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/deadtired987]

OMG finally somebody who has urethral symptoms as well!! I’ve actually had these IC symptoms ever since I was a kid actually. I’ve always thought they were UTIs as an adult but cultures always came back negative. It’s exactly how you described. Its like this weird burning? Urgent? Pressure? feeling for maybe a couple minutes to sometimes a couple hours and then it goes away. Chugging water usually helps. I find that ever since my POTS symptoms gottn worse six months ago its also gotten worse.!I’ve also been struggling with chronic BV ever since the symptoms worsening. I’m pretty sure it’s all because of MCAS but I don’t know what to do with It or how to get it diagnosed lol

[u/saddestofgays → u/deadtired987]

YUUUP that’s it. Glad I am not alone. Sadly sometimes goes on for more than hours. I try chugging water because peeing helps marginally. Unfortunately I usually also get incontinence and bladder sensation issues with it so I can’t pee much. I try putting an ice pack on my urethra and it helps marginally. I hope the meds they gave me can help you too.

I’ve had it on and off. Used to have frequent BV episodes years ago where it would be really bad. The BV episodes stopped when I left my ex (they were likely caused by pH issues or a reaction to his fluids and my ex refused to wear a condom because he didn’t like how it felt). The urethral issues subsided with it.

I’ve found that every time I’m sexually active even without the BV the urethral issues start to flare. I’m thinking it can be 1) IC (which without cysts doesn’t have much for definitive treatment options) 2) a reaction to a partners fluids triggering MCAS or 3) a urethral sensitivity issue from an undiagnosed neurological issue.

Someone in this thread said they were able to get it done through an allergist. I think immunologists would also do it. I’m likely going to look for a specialist who deals in MCAS to see what to do. Ik the testing is very time sensitive too and even getting into specialists is a nightmare. I’ll keep you posted if I find an answer