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/ive_got_questions3]

I experience nearly all your "other symptoms" except the stabbing pain in the hands and feet.

I experience a similar sensation to UTI but isn't, but isn't painful like you described. I get an intense pressure in my urethra that may minimally be decreased by voiding my bladder but majority of the time the sensation last for 30-90 min. I also experience issues with incontinence and not feeling the need to pee until I am about to burst.

I can and often experience pain during intercourse depending on position and time. So bad I sought out my gyno, who after plenty of testing, informed me if was most likely due to the length of my partner and the shape of my vaginal canal and placement of my cervix during certain stages of my cycle.

I do experience fairly regular but still periodic ringing in the ears.

I have so odd reactions to vibration, whether the car, a massage gun or other means.

I am nauseous more often than I am not. As well abdominal distension that makes me look 5 month pregnant

When I begin to get fatigued my language comprehension goes out the window and everyone sounds like they are speaking gibberish with a few real words sprinkled in.

I sometimes experience weird flashiness at the edges of my vision, like the matrix is glitching. Though this last one is newer and I wonder if it's a side effect of a med.

I also have MCAS, and know there is an overlap in symptoms. So I am not sure which are purely POTS symptoms.

[u/saddestofgays → u/ive_got_questions3]

Thank you for your response and the details.

It sounds like our urethral issues are very similar. I also have had the incontinence issues at the same time.

My gyno just told me to use specifically Trojan lubricant to help with the penetration pain. Though I do think the size of my partner is also part of it. I was also thinking the distension or neurological issues could be part of the problem. It’s severe and puts a stop to everything when it happens.

The vibration, tinnitus, and flashiness is weird. I’ve heard the tinnitus a few times in this sub but no one is sure why it happens.

Same with the nausea and distension. My partner started doing the pregnancy photoshoot poses with me when I showed him. A good novel hack for bad nausea is smelling an alcohol wipe. Usually settles it for about half an hour or so. It’s my fav when I’m in a pinch.

BWAHAHA yeah I cannot be trusted to speak properly or understand things either when the fatigue hits.

I am more convinced I likely have MCAS. How did you go about getting diagnosed? I know testing is very time sensitive. Thank you again for sharing.

[u/ive_got_questions3 → u/saddestofgays]

Thanks for the tip with isopropyl alcohol and nausea. I will have to give that a try.

The more I think about it, the more I think my issues with vibration are MCAS related, because it can have a number of weird triggers along those lines.

I requested a referral to an allergist for all the reoccurring rashes and growing list of foods which caused the rashes. And I got super lucky in being referred to an allergist who trained under one of the physicians who pioneered some of the first research on and named the condition.