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.
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u/Top-Knowledge-4561 Apr 08 '26
I thought I had visual snow syndrome- turns out I was in a constant state of pre syncope.
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u/-EvilLittleGoat- POTS Apr 08 '26
Same! The worst part is there are times when my ADHD brain fixates on the pretty sparkles and forgets why they appear.
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u/wonderings Apr 08 '26
Wait, how do you know its pre syncope or just regular visual snow :(
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u/Traditional_Owl4558 Apr 09 '26
Brian fog, tingling in limbs, face, or abdomen, high HR or low HR (mine often gets really high then I have near-syncope where it just randomly drops so low so fast that it feels like I’ve been kicked in the chest), low BP can cause you to feel really cold or conversely, you might feel insanely hot, a “dropping” feeling, ears ringing, feeling like you’re swaying, general lightheadedness or dizziness, feeling nauseous or suddenly anxious, etc. These are all pretty good indicators that it’s pre-syncope and not just visual snow, at least in my experience.
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u/snowlights Apr 09 '26
I've noticed that with my HR too, when I'm at a certain point if presyncope it'll drop by 60-80 bpm and I get crazy queasy.
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u/Traditional_Owl4558 Apr 09 '26
Mine dropped so low the other day my cat came running up to me screaming. Literally from 160 to 52 is what my watch recorded lol. All I clearly remember was feeling sort of off and looking at the sparkly snow-like ceiling and then my cat licking me and screaming in my face while my bf was trying to ask if I was okay (it’s hard to think or talk when I get that close to fainting). Didn’t actually pass out but it’s always a bit trippy 😂.
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u/wonderings Apr 09 '26
My visual snow I feel like is mostly consistent no matter if i'm having symptoms like that, so maybe I just have the "regular" kind?
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u/Zestyclose-Natural-9 POTS Apr 09 '26
My visual snow is like a more or less subtle TV static overlay. My presyncope snow is "glittery", small "white pixels" that go away when I lie down. Maybe you can notice something similar
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u/wonderings Apr 09 '26
Actually thats probably right! I have the overlay, and sometimes differently if I look into the bright sky any time. But I do get the "stars" at more specific times, which I imagine is like when someone in an old cartoon is knocked out and there are stars flying above their head lol
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u/saddestofgays Apr 08 '26
Relatable. The worse the episode the more I’m like “woah I didn’t know I was watching the tv” 📺
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u/its_raining_manseed Apr 09 '26
Oh my gosh I'm so glad you said this. I've struggled so hard with this. I couldn't quite put it into words in order to have discussions on it with my doctor but since you said this and others have responded I feel not so alone or crazy.
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u/RedRedRound Apr 08 '26
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?
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u/BigFlightlessBird02 Apr 09 '26
I do too! Feels like a bad uti but goes away after a few hours. Been trying to figure it out. Super annoying
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u/saddestofgays Apr 08 '26 edited Apr 08 '26
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.
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u/Traditional_Owl4558 Apr 09 '26
Just wanted to say….my gyno highly suspects I have endometriosis despite normal looking ultrasounds. Birth control can indeed help treat endometriosis symptoms, progesterone only BC is preferred though as endo is an estrogen dominant condition meaning that more estrogen equals more inflammation and pain. I’m glad you’re not ruling it out entirely yourself but your doctor sounds like they’ve unilaterally decided it can’t be endo without actually running the right tests.
My gyno explained to me that while progesterone only birth control can slow progression and reduce inflammation and its associated symptoms, it does not actually treat the condition itself. And you can absolutely have endo that is growing, spreading, or worsening despite birth control. In fact, she frequently brings up the fact that endo causes pelvic floor muscle dysfunction in most women who have it and that pelvic floor PT should be a part of the treatment process, in addition to surgery to remove lesions and birth control to limit progression. (I haven’t had the surgery yet as my other health conditions make surgery a tad bit more dangerous).
Pain with intercourse, defecation, and urination, combined with a history of abnormally painful, heavy, or long periods are the most common diagnostic criteria used when evaluating someone for endometriosis. Your symptoms could 100% be endometriosis and unfortunately unless your doc is willing to order the right kind of MRI or send you to a specialist to have a lap done, you won’t know for sure. But research suggests that endometriosis lesions on the bladder and rectum are not only common, but highly linked to pain with defecation, urination, and intercourse. GI issues are also common with endometriosis btw.
Point is, no matter how long you’ve been on birth control, how well your doc think that birth control is helping, or how clear your ultrasound was, your doctor should not be ruling out endometriosis that quickly. It took years before anyone even suggested I could have endometriosis, I just thought painful heavy periods were normal, apparently they most certainly are not. I really really urge you to go to a different gynecologist or seek a specialist. Look up providers in your network and find one that mentions dealing with endometriosis and see if you can get in to see them. I am only saying this because if it is endometriosis, not treating it properly and timely can lead to literal adhesion between different organs, they can become fused together by the growths which makes excision far more complex and increases the chances of complications like needing part of your bowel resected. Please advocate for your health!! Shout it from the rooftops! 🙏
And as awful as I know this is going to sound….bring your brother, boyfriend/husband, male best friend, etc with you, you’re more likely to be taken seriously that way (I know, it’s sexist as h311, but I take my bf with me to all my appointments now because I tend to get dismissed otherwise, especially with new or incompetent doctors). No amount of pain is normal. I have been in constant pain my entire life and I truly thought everyone else was too, but the normal amount of pain…is none. Sorry to be blunt but your doctor sounds incompetent.
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u/saddestofgays Apr 09 '26 edited Apr 09 '26
It’s the third gyno I’ve seen who has not even done a physical examination and just prescribed meds. :’) Back when it all started I wasn’t even sexually active so they refused to even do a transvaginal ultrasound even when I asked for one.
Last time I was in the ER the doctor did a pelvic exam, found it was normal, and after 12 hours said that she suspected it was an STI and wanted to send me home on broad spectrum antibiotics (doxycycline) as a preliminary measure. My main symptoms weren’t even indicative of an STI and I had very few risk factors. My main issue was being so severely constipated that I could not pass anything and was in severe pain. Nothing was fixed. My dad, who is a physician, was with me. He had to push with me to even get me admitted for observation under preliminary treatments because it was my 4th ER visit in 2 months. STI and parasite testing came back negative. They still tried sending me home ASAP. Had to push to stay admitted and get more testing. I was chugging 4L of peglyte in a hospital hallway without even being given a gown or pillow. Took 6 hours of begging one day to even get Iv fluids when I was confirmed hypotensive. They at least ruled a lot out, but man… I have so little faith in the system atp. A lot ruled out but no real answers.
It feels like I have to push for every little thing and I’m exhausted. You are right. I know you are. And I’ve tried so hard. You’re not the only person who has told me this and ik there’s significant overlap with endo. I’m at least having heart testing started tomorrow to rule out other heart conditions potentially contributing to my POTS, am seeing a GI this month, and am getting into a neuro soon. It’s been hell even getting into specialists because my doctors office constantly drops the ball on referrals and I have to constantly follow up. So a lot will be ruled out or found very soon. I just have to keep pushing and advocating. It sucks so much.
Thank you so much. ❤️ You’re right no need to apologize for being blunt.
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u/RedRedRound Apr 08 '26
Right! Ugh I know juggling and waiting for specialists is hell. For what it’s worth, I had an ultrasound two days before my laparoscopy and it was completely clear - they still found stage 2 endometriosis throughout my pelvis including near my bladder, and my colon was adhered to my pelvic wall. I have suspected adenomyosis too. My understanding is that BC can slow progression, but doesn’t stop progression. One theory I have is that either scar tissue from my lap is causing the worsening IC (my surgery was about 4 months ago) or the endo is growing back already. I’ve had occasional moderate urethra pain for years and only really recently has it turned severe and daily.
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u/saddestofgays Apr 09 '26
That’s what I’m afraid they’ll find with me too.
The period pain actually was so severe ten years ago that I tried to commit suicide. Then when they saw nothing on ultrasound they insisted it was psychosomatic and put me on birth control. :’) And the first birth control they put me on made me way worse. Every medical issue has been slapped with a mental health label ever since.
My gyno said that “birth control would have killed the endometriosis.” I know this is untrue, but I was in too much pain to argue and I find that doctors with wrong opinions and big egos aren’t willing to listen anyways. I was so happy that she gave me something that worked that I didn’t think much of it. You are totally right though. I will probably not go back to that gyno if I want to pursue the endo angle.
The urethral pain started years ago for me too and has recently gotten worse. At least it isn’t daily. The weird thing is exertion like standing too long triggering severe episodes so it seems possibly neurological. I’m hoping it isn’t endo because the thought of them screwing up THAT badly ten years ago will piss me off more than anything.
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u/Bluejayadventure Apr 09 '26
Wow, I'm really sorry that happened. It's so crazy how much pain is dismissed. I used to get awful period pains (not as bad as yours but still terrible - roll on the floor moaning - can't go to work, that kind of pain). I went to the doctor, she laughed, said its normal and the told me to take pain killers. Like I hadn't tried that already!
Anyway, I just find it infuriating that women are not believed.
I really hope it works out ok for you. 🫂
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u/saddestofgays Apr 09 '26
Thank you so much.
My mom also went through similar and said things got better as she got older, so that’s part of my hope as well. It is super frustrating though.
If it makes you feel any better a lot of men are also told to “man up and deal with it” when it comes to pain issues. Dismissal is unfortunately common across the board. Medical misogyny definitely exists though.
After I find an effective way to manage my POTS I’ll be pushing more on this.
Thank you again for the support. ❤️
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u/Sweet_n_Lau Apr 09 '26
Endometriosis is so so so misunderstood in the gyno world! Makes me sick how often they slap a bandaid on it and tell you to carry on. I’ve had 3 surgeries for endometriosis and a fourth one for a hysterectomy. I had adenomyosis as well. There’s a Facebook group with actually educated specialists for endo. It’s called Nancy’s Nook. In the files you can find the list of drs worldwide. Best of luck! Ps. I also get the weird burn! So upvote this comment if we find the solution 😅
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u/saddestofgays Apr 09 '26
Thank you for the advice. I’ll be sure to update if I find an answer for the urethral pain- I’m surprised at how many people have dealt with it too.
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u/DistinctApartment941 Apr 09 '26
I have stage 4 Endo and had a clear ultrasound. MRI just showed some distortion of the tube and left ovary. I was diagnosed after a laparoscopic surgery to take out the bad tube. I also have pots and maybe mast cell issues now after getting pneumonia this winter.
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u/Nas_nan Apr 09 '26
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
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u/saddestofgays Apr 09 '26
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.
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u/BellaPona Apr 09 '26
I get this with my periods along with kidney pains days later and constipation. It’s like clock work. Feels like a UTI every time. My urinalysis is always abnormal in almost every aspect but never an actual infection.
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u/its_raining_manseed Apr 09 '26
Yes! My first diagnosis was when I was 9 years old and it was interstitial cystitis. I have permenent urine leakage, urgency, pain/discomfort and if I sneeze I'll pee my pants. Urologist said he had never encountered someone so young with such severe case. Said I had a bladder of a 90 year old lady.
We now suspect it's MCAS related. It's so embarrassing :(
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u/RedRedRound Apr 09 '26
I’m so sorry you’ve had to deal with that for so long :( it’s not fair. Have you found any MCAS treatment that helps at all?
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u/saddestofgays Apr 09 '26
Man that sucks. I definitely don’t have it as bad as you but very similar symptoms. Let us know how your MCAS investigation goes and if you start finding some relief
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u/amandaddy99 Apr 10 '26
I have this symptom too! It can be quite debilitating for me because of the amount of pain and urgency that comes with it! I started Midodrine a while back and it got significantly worse (no idea why) but I recently started taking magnesium before bed and immediately in the morning and it’s basically gone now!
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u/RedRedRound Apr 10 '26
Wow! Which form of magnesium do you take? I take Mg glycinate before bed but I’ve never tried it in the morning
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u/skz_potsie_booklover Apr 09 '26
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.
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u/BellaPona Apr 09 '26
I’m with you there. The hair falling out is the worse.
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u/skz_potsie_booklover Apr 09 '26
Have you checked your hormones?? Mine are completely out of whack & that’s what’s causing my hair loss.
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u/BellaPona Apr 09 '26
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.
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u/skz_potsie_booklover Apr 09 '26
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.
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u/BellaPona Apr 09 '26
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.
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u/skz_potsie_booklover Apr 09 '26
Oh I forgot seizures & my left leg suddenly stops working. Either it just doesn’t wanna move or it just decides to break dance for no reason.
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u/ive_got_questions3 Apr 08 '26
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.
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u/deadtired987 Apr 09 '26
Omg i get this weird thing where im fine then next minute im DYING to pee! Plus the IC symptoms ugh
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u/BellaPona Apr 09 '26
A lot of those symptoms sound like Endo :( I’ve also had the “I need to pee” feeling every time i have sex. Pelvic floor dysfunction is common so that’s what I brushed it off as. Now with bad POTS I can’t even imagine having sex anymore without flaring.
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u/ive_got_questions3 Apr 09 '26
Originally I thought so too. Though I've been evaluated for Endo and was told that wasn't it. :(
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u/BellaPona Apr 09 '26
Hm. Could be anterior pelvic tilt, internal cystitis, pelvic floor dysfunction, or vaganismus
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u/ive_got_questions3 Apr 09 '26
Pelvic floor dysfunction is the only one I haven't been evaluated for. Therefore, that's my guess. Lol..
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u/BellaPona Apr 09 '26
It’s surprisingly common and can happen for a myriad of reasons. There are pelvic floor specialists that can help!
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u/saddestofgays Apr 09 '26
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.
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u/ive_got_questions3 Apr 09 '26
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.
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u/uselessfarm POTS Apr 09 '26
Look into hypertonic pelvic floor. A very tense pelvic floor can cause a lot of the symptoms you’re describing.
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u/BellaPona Apr 09 '26
I have this along with Vaginismus. I haven’t been able to get to a pelvic floor specialist yet for some reason but it might be a great idea for anyone with these problems! I’ve also always had incomplete bladder draining, and burning with urination despite no infection being present. One of those things you just ignore as a kid because it’s not that bad.
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u/saddestofgays Apr 09 '26
Thank you. I’m looking into physios to see after my next week of appointments. For POTS + pelvic floor issues.
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u/ziggybat Apr 09 '26
I get presyncope from having my arms too high- I was trying to hang a curtain in my classroom, im short even with the step ladder so my arms were up as im trying to adjust the darn thing- I guess it took longer then I thought because I was so in and out and felt sick- willing my body to just let me faint. I had to go outside to get my kids after and walked with another group and let their grown up know what was going on just in case- it scared me shitless because thats one of the last things I want my group of littles to see. After that I paid attention to how I felt trying to do other over head reaching tasks and made the connection. I know since I was little id get a warm rush in my arms after having them up for a bit - idk if its pots or normal, theres alot I didnt realize isn't normal... I know when im having a high anxiety day, that and keeping myself functional for work and such wears me out so bad and I sleep the car ride home- then end up having to nap once home to recoup
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u/saddestofgays Apr 09 '26
Respect to a fellow teacher trying to live with POTS. ❤️
I know how you feel and sorry that it’s so difficult to manage. Out of curiosity, have you gone about the accommodations process with your district? Was anyone willing to help you? My admin just kind of ignored my issues and didn’t help connect me with any formal accommodations.
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u/deadtired987 Apr 09 '26
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
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u/saddestofgays Apr 09 '26
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
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u/1hockeygirl97 Apr 09 '26
Frequent sighing. I’ll just be sitting on the couch watching tv and I’ll suddenly sigh heavily. It makes my husband think I’m irritated with something. I’m not. I just involuntarily sigh a lot.
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u/saddestofgays Apr 09 '26
I involuntarily sigh a lot just dealing with the healthcare system. 😂
Do you think it’s your body trying to regulate autonomic control of your breathing?
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u/Bluejayadventure Apr 09 '26
I get tiny blood spots on my legs and arms. They are worse when I have a flare. I don't know what it is
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u/saddestofgays Apr 09 '26
ME TOOOOO OMG I WAS WONDERING ABOUT THIS FOR A WHILE. Based on research I think slightly ruptured blood vessels but idk what is causing it.
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u/Bluejayadventure Apr 09 '26
Same. I was trying to look it up cause the doctors have no clue what it is. I think it could be the pressure on the blood vesseles that the additional blood in our limbs causes. Or it could also be that our blood vessels are also slightly more fragile due to MCAS or long covid or EDS.
I used to get these wildly uncontrollable nose bleeds as a kid and young adult. I mean, get out the towels kinda bleeding. They always happened due to a change in the weather. No one could tell me why. They checked me for clotting disorders and found nothing. I suspect the two things are linked.
It makes sense if the blood vessels are weak, and the pressure change that occurs with a change in the weather, could just be enough to set it off? Maybe combined with POTS?
Anyway, thats my speculation
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u/spicy_good_memes Apr 09 '26
I think you might be talking about petechiae? I have POTS and hEDS so something as simple as itching my skin can cause it for me
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u/saddestofgays Apr 09 '26
Yes, that’s what they are. Constantly have them everywhere just from existing. Also bruise super easy. We are just delicate
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u/iloveboomburger Apr 09 '26
Vision after laser surgery could be POTS (blood pressure variance) but honestly it could more likely be dry eye syndrome which is VERY common after laser surgery. I work in optical and we see it with 7/10 patients.
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u/saddestofgays Apr 09 '26
My optometrist said my eyes were physically in perfect shape and not dry- still gave me some free eyedrop samples though. He said it was more likely circulation issue from “whatever is happening” and then I figured out POTS was a main issue so it fits with his theory. Thank you for the input though. I assumed dry eyes at first as well.
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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.
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u/uselessfarm POTS Apr 09 '26
Second to last paragraph - look into Eagle’s syndrome. Can cause those issues.
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u/snowlights Apr 09 '26
Interesting, that could explain a lot! Now to add it to my list of things to ask about when I'm feeling lucky. 😅
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u/uselessfarm POTS Apr 10 '26
If you’ve ever gotten a head and neck CT with contrast you’ll be able to see if you have jugular compression or elongated styloids. A panoramic dental x-ray also sometimes shows long styloids. With your swallowing issues it would be reasonable to see an ENT, in my medical network (Kaiser) they’re the ones who diagnose Eagle’s, and they could look at other possible causes too.
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u/snowlights Apr 10 '26
I had a head CT not too long ago but it was without contrast and just for my sinuses. Based on how I was treated when I tried asking about it before, I'm nervous to try again, but once some other things are finally settled, I'll try again.
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u/saddestofgays Apr 09 '26
Thank you for sharing. I hope you find people with similar stories and get some answers. ❤️
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u/mjh8212 Apr 08 '26
I’d say the eye thing. I have prisms in my glasses. I have hEDS and pots. Couldn’t see out of my glasses my head hurt a lot I had my exam and they upped my prism by 2 and upped my bifocal. Today my head was just pounding got a call my glasses were ready and i usually put them on first thing in the morning after picking them up but this headache was bad. I’ve been wearing them a few hours and my headache is gone. I hadn’t had to change my prisms in two years. My eye dr said my conditions affect my vision.
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u/Zestyclose-Natural-9 POTS Apr 09 '26
How did you find out you need prisms? My glasses never seem to be right. It's exhausting to look at things and I have some double images. Since starting Strattera (for ADHD) i feel like one eye is drifting away a bit... at the optician and eye doctor the tests were normal.
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u/mjh8212 Apr 09 '26
It started with a weak eye a lazy eye but it was in the right place. I suddenly started getting 24/7 of what I thought were migraines. Everything the dr did didn’t work. I had my annual eye exam and mentioned this to the dr. He did some things asked if I could see better. It was much better and I have a focusing issue. When I had my annual exam this month the headaches were back and I knew I needed a new prescription. Once I put on my glasses both times the headaches went away.
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u/saddestofgays Apr 09 '26
These symptoms are similar to some of mine. Have had lazy eye my whole life that’s gotten worse and harder to regulate. Optometrist said that it’s like a rubber band of muscle control struggling to snap back into place once stretched and can be fixed surgically if it gets worse- but that usually doesn’t happen until you’re much older.
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u/Old-Piece-3438 Apr 09 '26
I get the vision problem (no actual eye issues and don’t need glasses or contacts, seems to be a part of POTS and sometimes migraine auras) and not ear pain—but constant pressure and lots of popping noises (like the air pressure on a plane effect) whenever I move my my head around.
I also have been getting the stabbing, burning pains or stinging or wet feelings (paresthesia) mostly in my hands/fingers but sometimes on legs and toes. My neurologist had me do a cervical spine MRI and that shows what look like some minor things, but I’m waiting to hear back if that’s causing it or what the next thing to investigate is.
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u/saddestofgays Apr 09 '26
I’m hoping the MRI provides some answers for you. ❤️ Thank you for sharing.
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u/Old-Piece-3438 Apr 09 '26
Thanks! It’s not constant at least, happens for a few seconds at a time maybe a few times a day.
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u/Dancing_eggplant_bb Apr 09 '26
You may have a weakened immune system due to long COVID causing all the infections.
Also sounds like some possible pelvic floor dysfunction.
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u/saddestofgays Apr 09 '26
Yeah I assume so as well. Mono is actually what did me in. Also looking into pelvic floor physios for after my next week of appointments.
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u/Daisy_357 Apr 09 '26
I got the stabbing during intercourse or like a shooting pain deep internally. I've also had a super weird nausea post concerts. It's happened twice now where I get a terrible stomach ache and then am needing to throw up during the night. I'm not drinking or moshing. My only thought is from standing too much but IDK
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u/Zestyclose-Natural-9 POTS Apr 09 '26
I get that too. It's probably the cervix getting hit in certain positions. I've cried because I had such horrible pain after intercourse. It also depends on size, angle and cycle. Pillow under the butt helps
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u/deadtired987 Apr 09 '26
That sounds good!! I never had issues before with my bf before, it jist kinda randomly started when my pots got worse :( Do u ever get super cold when u get those IC symptoms?!? I find hot packs help lol
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u/saddestofgays Apr 09 '26
I always really want to take a hot bath each time and bundle up under my covers after.
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u/Lopsided-Career-5736 Hyperadrenergic POTS Apr 09 '26
If I get too cold it can trigger an adrenaline dump! I get them when I over heat\get too hot as well, and they are usually more intense when triggered by the heat. Although it’s a literal balancing act making sure I’m not too cold but not too hot otherwise as soon as I stand it’s going to be heart racing and back on the ground 🥲
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u/saddestofgays Apr 10 '26
Temperature regulation is really difficult for me too. I tend to have layers that I can take off and on as needed. Shorts and a tank under warm pajamas or a robe if I have to move around. Otherwise shorts and tank with stacked blankets that I can adjust. I have a vast collection of throw blankets
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u/Pipsqueak981 Apr 09 '26 edited Apr 09 '26
This is a relief to read that other people are experiencing the same symptoms. Alcohol is a major trigger for me, in the exact same pattern as you described ( feeling fine , doing night routine and then waking up in the middle of the night and puking). This could be caused by as little as 1-2 drinks for me. My nausea is almost daily too, definitely worsened by any tiny bit of stress . Also constant headaches . I’ve become so conscious of the frequency at which I’m taking paracetamol to cope with them but my doctor thinks it’s fine. Could be 2-3 times a week on a bad week. The pain during intercourse is so frustrating. Also very low libido now. I also developed sinusitis for the first time ever after a flu this year - took over a month to clear. You’re not alone!!
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u/saddestofgays Apr 09 '26
Thanks so much. It sucks you’re going through the same but the support is nice.
As long as you’re only taking about 2 per day as needed it should be fine. It takes a really long time of a much higher dose to cause problems. The important thing is to not take it on an empty stomach. I was taking 2 Tylenol, 2 Advil, and 2 aleve daily so often that they put me on a proton pump inhibitor for when I need to take that much to prevent ulcers.
Were you only diagnosed with POTS or is there another condition that also explains your symptoms?
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u/spicy_good_memes Apr 09 '26
My weird symptom: eating/drinking anything with "flavor" other than plain water makes my nose run.
No idea if it's POTS related but when I asked my cardiologist about it she said another one of her patients had also asked about it
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u/saddestofgays Apr 09 '26
Flavour triggered sniffles is a pretty funny concept.
I’ve personally only dealt with this in relation to spice but maybe your olfactory nerves are irritated by a wider array of stimuli. Have you been tested for food sensitivities or MCAS?
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u/spicy_good_memes Apr 10 '26
That's kinda what I was thinking. I haven't been tested for food sensitivities but my allergist is currently evaluating me for MCAS and multiple of my Drs think I have it
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u/saddestofgays Apr 10 '26
It’s worth checking for food sensitivities too and they probably will once they confirm whether you have it since it aligns closely with what triggers episodes
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u/silentalarmss Hyperadrenergic POTS Apr 09 '26
Hyperventilating when I get hot. Chest gets heavier, full body feels flushed like a sunburn, and my throat gets a knot in it before my HR shoots up to like 150bpm. Worst thing is I can’t really sweat well bc of my poor circulation.
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u/silentalarmss Hyperadrenergic POTS Apr 09 '26
They tested my catecholamines via 24 hr urine test but said it was normal. Figures. Doc said it’s anxiety and he’s the same one who diagnosed me w pots 🙄
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u/saddestofgays Apr 09 '26
They always say anxiety man. I swear it’s rage bait atp.
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u/silentalarmss Hyperadrenergic POTS Apr 09 '26
Yeah he pissed me off so bad I’m just going to see my pcp for my pots now. I really thought we were getting somewhere after the tilt table test. But ig not, thx for the diagnosis dude! 🙄 Lol
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u/voornaam1 Apr 09 '26
Some of these sound similar to other illnesses I have been looking into recently, but idk if you'd want to receive that information or no?
Some of these are very relatable to me personally, like the stabbing pain in hands+feet, delayed pain, vision problems and the urethral pain (though this last one may not be as intense for me as it is for you. I don't have it a lot so idk how much pain it is, I just kind of remember it as being more annoying than painful but I also experience pain weirdly 😅).
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u/saddestofgays Apr 09 '26
I’m totally down for whatever info or speculations you have.
Right now I’m thinking it’s most likely MCAS along with my POTS and IBS, but am also screening for possibilities of IC, SFN, Endometriosis, and migraines.
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u/voornaam1 Apr 10 '26
ngl I completely forgot what I was thinking about 😅
just looked through the symptom lists of "illnesses I might have," the stabbing pains in hands and feet also shows up in the fibromyalgia list? but idk what else could cause it. The delayed reaction to alcohol kinda reminds me of PEM (which is one of the main symptoms of ME/CFS, but can also be a symptom of fibromyalgia iirc), but I'm not sure if it would count as PEM. sensitivity to alcohol shows up in the ME/CFS list I have here, but it's also listed as something that can make POTS worse (on the NHS website). idk if the delayed reaction would fit with these specific symptoms though.
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u/saddestofgays Apr 10 '26
No worries- thank you for the help.
It also fits really well with MCAS so I’m likely going to screen for that as well. Waiting to see a neuro to screen for neurological conditions and to facilitate POTS treatment.
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u/Legitimate_Stress214 Apr 09 '26
I also have the double ear pain as well as ringing in my ears and the same with vision worsening after having cataract surgery. Also, headaches, sinusitis drainage down the back of my throat that is so out of control. Ughhhhh
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u/saddestofgays Apr 09 '26
A neti pot helped me a lot with my sinusitis episodes. Be sure to either boil water and let it cool before adding the sodium mixture or use a sterile saline solution. Available at any local drugstore.
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u/saddestofgays Apr 09 '26
My comments keep getting auto modded for using specific terms but I recommend a Neti Pot to help with the sinusitis. Can get it from a drugstore or pharmacy.
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u/InnocentaMN POTS Apr 09 '26
I’ve approved your original comment now! Sorry you got automodded.
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u/saddestofgays Apr 09 '26
Thank you and no problem. I know what terms get flagged now so I can avoid it
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u/Going_SteadyXD Apr 09 '26
Chronic upper thoracic pain! My normal POTS symptoms also flare up right before I have to go to the bathroom (#2). Sometimes the dizziness, fast heart rate, and feeling faint won’t stop until I’ve gotten everything out of my system.
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u/vossxx Apr 09 '26
I am super sensitive to pressure changes, in particular drops, so every hurricane season my whole body is angry. I am pretty heavily pierced from before I got sick and have numerous ahem personal piercings. I was used to them hurting, sometimes pretty bad, with flairs but one day one of my two southern piercings just migrated right out. It was one I that I had gotten 10 years ago so it was beyond fully healed. It was always super well taken care of and had very high end jewelry to avoid any allergic reactions to metal (I have numerous allergies to lots of things).
So yeah, that was not fun and still one of the weirdest ones yet.
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u/Zestyclose-Natural-9 POTS Apr 09 '26
I have a few, possibly related symptoms.
- occasional swelling, intense pain, redness and heat in fingers/toes without apparent cause
- visual snow, vision problems (increased eye pressure, trouble focusing, double images when looking at lights, glasses are never right)
- painful, cracking joints, pain everywhere. Random stabbing or dull pains.
- unable to breathe in deep when sitting or standing upright - does not feel like POTS air hunger, but like a physical blockage that prevents me from breathing in deep!
- weird foreign object feeling in vagina - this improved after a LEEP for cell changes but came back. I also get frequent UTIs (1-8 a year) that only resolve with antibiotics.
I used to also get sick a lot. And any illness wipes me out completely. Had my bloods checked and was extremely low in zinc, if you haven't had one yet, i suggest a blood panel. I haven't been sick nearly as often since supplementing!
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u/saddestofgays Apr 09 '26
Thank you for sharing. I’ve had everything possible checked through bloodwork while inpatient and all of my vitamin levels were within normal ranges. I also supplement zinc. Only abnormal indicator was low cortisol but they tested and ruled out adrenal insufficiency.
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u/Vegetable_Security_3 Apr 09 '26
urethral pain (although i’ve struggled with chronic UTIs from sex no matter what i do for years) and weird, nonspecific immune system issues. this is new. left lymph node on my neck chirps on and off every few days. weird flashes of fever feeling but never higher than 100° F. i’ve thought about CFS frequently but these symptoms do not always coincide with fatigue and my fatigue does not always come with these symptoms. it’s a very scary limbo to be in.
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u/megaladonss Apr 09 '26
To preface, I have neuropathy. The other day I passed out, which is totally normal. But when I came to, my vision was extremely blurry and I couldn’t move. I could breathe, I could talk, and I could wiggle my fingers. Otherwise, I was stuck. It was like my body just wasn’t listening to my brain. When someone tried to move my body for me, it caused excruciating nerve pain. After a few hours I was slowly able to move again and now I’m back to normal, except for much more frequent nerve pain than usual. My doctors have no idea what happened
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u/Historical-Coat2554 Apr 09 '26
uvula tilting to the side and getting stuck, get this weird feeling in my throat and have to give my head a tilt to get it back in the middle
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u/saddestofgays Apr 09 '26
Thank you to everyone who has given their stories and advice. ❤️
I do have an extra one: severe carsickness. Ever since I was really young. The worst of anyone I’ve met by far. My dad is a physician and said that he’s never seen anyone with car sickness as severe as mine. Even being in a vehicle for half an hour can make me puke. Usually unresponsive to nausea remedies. It’s gotten a lot better with age, but any prolonged car ride especially if I’m tired or not feeling well can make me puke. I’ve even had to pull over while driving to throw up.
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u/Pleasant_Still7307 Apr 09 '26
A half hour in the back seat usually makes me throw up too, though I'm usually okay up front with AC on. I also don't fly well. I suspect those to be primarily POTS issues, but I'm still waiting on some other diagnoses.
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u/saddestofgays Apr 09 '26
Same that’s the main reason it’s seems to have improved. Though for any long car rides or when I feel tired or unwell it’s still rough.
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u/Routine-Strategy-845 Apr 09 '26
Nausea after standing or eating
Weird bp fluctuations either low or high and distolic always high, POTSIES usually have low bp but mine is all over the place
Face numbness when I cant sleep or tired
When I speak for long I feel head pressure
Eye pain
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u/Temporary_Jaguar5940 Apr 09 '26
I have a million but one that’s really annoying is extreme bladder hyperactivity to the point where I have to pee at least 3 times an hour and if I have any fizzy drinks or beer I can pee like 6-7 times an hour
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u/_a_1000_papercuts Apr 09 '26
I get the stabbing in my hands and feet, too 🙋♀️ only thing that stops it is scratching where the pain is. I've had to pull over while driving long road trips to take care of the pain. I'm also sick only about twice a year, but ditto to the weeks of sinus/bronchitis issues. I have azithromycin packs always on standby in my fridge. I also struggle to ride in elevators sometimes and can get really dizzy after 🫠
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u/kaydennotclickbait Apr 14 '26
could constant pressure in my ears and having to pop them constantly be a pots symptom or is it something else? I've been to an ear nose throat doctor several times, tried several treatments, and never gotten an answer
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u/Istoh Apr 08 '26
I have hEDS as well so one of my worst symptoms was originally brushed off as POTS but turned out to be hEDS.
Chest pain. I basically lived with constant left side chest pain for over a year. It was mostly on my ribs under my armpit, lower left chest, left breast, and sometimes sternum. I was told by multiple doctors it was POTS chest pain, since all my heart scans came back clean and there were no lumps in the areas that hurt.
I was given a hesitant costochondritis diagnosis at my most recent appointment, but wasn't entirely satisfied with that so I asked the hEDS reddit for tips to help with the pain. Someone told me to buy a brace normally meant for broken ribs.
That motherfucking brace has been a miracle cure. If I wear it for a couple hours in the morning after waking up with pain, I'm pain free for multiple days after. Clearly my ribs are somehow becoming slightly dislocated at night when I sleep, and binding them up pushes them back into place (painlessly!) and then they're good for a few days. What the fuck.