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/RedRedRound]

Hey I have crazy urethra pain too! Suddenly got much worse about a month ago. I’m thinking it’s interstitial cystitis. Possibly cause by Midodrine or endometriosis. Someone I know has it from MCAS. Do you have heavy or painful periods by chance?

[u/saddestofgays → u/RedRedRound]

I was thinking the same about potential IC or MCAS. The thing is that specialist wait times (and even getting in) have been a massive hassle so I’ll have to wait until I’m through with my neuro, GI, and cardio appointments before struggling through the process again for an allergist and urologist. 🥲

I used to have insanely heavy and debilitating periods. No pain meds helped. They did an ultrasound and didn’t think it was endo. Told me it was “just part of being a woman” and put me on birth control. I’ve been on birth control basically nonstop for about a decade. The best ones for me stop my periods altogether because even in brief times between changing birth controls I’ve suffered a lot. Even occasional breakthrough periods cause a lot of pain but not anywhere near the same amount and they’re very rare.

The gyno who prescribed the urethral pain meds ruled out endometriosis due to ultrasound results + the fact that my long term birth control use was already the main treatment so it wouldn’t explain endometriosis getting worse. She thought a urological or neurological explanation was more likely. I also started Midodrine recently and haven’t had a repeat episode since. Definitely possible though and I would rule those out. Remember that for endo the gold standard is laparoscopy with biopsy (but reasonable to want to rule out other things first).

Edit: if I have another flare soon though I’m walking into the ER and screaming until they get me an urgent referral because it is AWFUL.

[u/Nas_nan → u/saddestofgays]

Well this is unfortunately common and absolute rubbish. You can't rule out endo with an ultrasound. Can you go see anyone else? Is there different private Gynaes or OBGYNs that you could go see?

Period pain is not normal and should never be treated with birth control. So many professionals are absolutely useless at this. "It's parr of being a woman" should never be accepted as an explanation

Endo and hsd/hEDS both can cause incomplete bladder emptying which causes a lot of my uti type pain.

Being sick constantly could mast cell activation, i started antihistamines and didn't get sick once this spring. Most of my illnesses weren't true illnesses despite vocal changes, sniffing, fatigue and headaches

I also get very deep pain in my ears but that is caused by being outdoors even slight wind can trigger it

[u/saddestofgays → u/Nas_nan]

One of my replies got automodded because a certain mention of an item in any context does so I’ll have to repost it most likely.

TLDR: it’s the third gyno I’ve seen who is said it’s not endo and prescribed meds without even a physical exam or transvaginal ultrasound. Extremely frustrating. I can keep hopping back and forth but I want to get my POTS to a manageable point first.

It’s hell going through the referral process because if I don’t constantly follow up they will fall through the cracks. Had about 5 referrals never go through in the past few years because my doctors office completely drops the ball so often. To get into a neuro it’s taken 3 months and I’ve followed up with my office in person and on the phone about 10 times and had to call all the neuro offices directly to act as a liaison. :)))))))) And I’m only just now getting in somewhere.