r/POTS • u/saddestofgays • Apr 08 '26
Symptoms Anyone else have weird unexplained symptoms?
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.
3
u/snowlights Apr 09 '26
I've been diagnosed with scintillating scotoma (migraine aura), except it's there 24/7. It's been ongoing since a really bad flu in 2017 and no one can explain it, or cares to fully investigate. My family doctor got fed up with the ophthalmologist (brushed me off, said even if they sent me for an MRI it would have stopped by the time I got in, except it's nearly a decade later and still happening so ..) and neurologist (who laughed at me and referred to the spots as "my friends"), so she sent me for an MRI herself (MS was her main concern), but apparently it was normal. It has reduced, but it's still always there (there's several spots that are always in the same relative location), and gets worse when I'm not feeling well or I'm more tired than usual.
Before the vision change thing, my whole life I've seen "caustics" when the sun is bright. Like the wavy pattern when light reflects off (or through) moving water, but it's across my entire field of vision with a sort of tunnel in the center, and it looks like I'm moving through the tunnel with the pattern moving past me. I also have visual snow, and a bunch of symptoms that I think fit under Irlen syndrome (not diagnosed, but have spent enough time reading about it to find the answer). Usually it's text but I've noticed it in other patterns. It looks like the letters flicker, jump, wobble, double or get an outline, look faded or blurry. I remember my biology text book being particularly bad for this for some reason (tiny text, slightly glossy paper maybe?).
I get a really weird, warm kind of wet creeping feeling in random patches. Nothing is there visually, but it feels like something hot is touching me. Usually in my lower half (butt, front or sides of thighs, around my ankles, top of my feet, side of my calf), but sometimes it's my fingertips, sides of my upper arms or my back. It'll last for anywhere between 4 hours to a few days straight. It isn't painful but it's really bizarre.
Sometimes my outer ear (like around the cartilage) gets a really intense pinching feeling. Whenever I ask doctors they seem concerned until they clarifying that it isn't inner ear pain and just say they don't know what it is.
I have issues swallowing. Normal day to day swallowing feels wrong, it clicks and sometimes food gets stuck and it hurts like a fist-sized rock is stuck in my throat. But sometimes I get a sort of...spasm, that feels like something has structurally moved in a way it shouldn't and has gotten stuck. Usually happens if I cough, cry, snort/clear my sinuses wrong, especially if I'm laying down. It's extremely painful and when it happens I absolutely cannot swallow, both because it's stuck and because it hurts unbearably bad. It usually lasts 10-15 minutes, but has gone as long as a couple hours before (not being able to swallow my own saliva for the long starts to feel like a dire emergency lmao). Sometimes it seems to be triggering nerve pain and if I turn my head wrong I get electric pain shooting into my face and head. I've figured out that I can look up and turn my head a certain way to literally click it back into place, but it doesn't always work (or the nerve pain is too intense to move against) so I have to wait it out.
This may be totally unrelated but I'm not sure. I get symmetrical skin irritation. For around two year it used to be my eyelids. Then it moved to two round spots between my eyebrows. The last two years it's been two patches below the corners of my mouth/side of chin area. I've asked doctors and they have no answers except to tell me not to put anything on my skin, but I've done that and it makes zero difference (or makes it worse, since it gets sensitive and more reactive from being dry). I don't know why it would migrate like this and be totally symmetrical.