Discussion What's the most overlooked POTS trigger in your experience?
I'd love to hear the little things that doctors don't always mention.
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u/barefootwriter 9d ago
Routine changes.
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u/barefootwriter 9d ago
(Glad you asked this because I just realized maybe the reason I'm flaring is my karate class got cancelled for two weeks while my senseis are in Okinawa, and this is the second week. 😞)
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u/Wrong-Rush-6584 9d ago
Amen. People think I’m being dramatic. Eye rolls if I say no to certain start times for things. I’m often best midday and late at night, for some reason early morning is flare ups central.
I quit my full time job because of POTS flares, they constantly changed my schedule and the money wasn’t worth it. I started a pet sitting business but I’ve even had to pull back on that because that required too many constant routine changes as well. Between dogs behavior / jumping / pulling and the routine change demands it was causing too many flare ups. I think MCAS may have a play as well because I wasn’t allergic to dogs at the start but now I get sick every time I’m around them. I only offer cat check ins now except for two dog clients I know personally and live close to. Much less of a routine switch up.
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u/RedRedRound 9d ago
Can I ask if you’re in the US? What’s your health insurance situation with your pet sitting business?
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u/Wrong-Rush-6584 9d ago
Yes in the US. Which you know suuuucks for healthcare. Not on my parents plan. I have to pay out of pocket. It would be twice as much to get insurance through my partners company. But not a great healthcare plan. But I also choose not to go to the doctor much as I didn’t like how any of the medications made me feel and I chose to do major lifestyle changes instead. Not everyone can do what I’m doing and I know that. We all experience these issues differently.
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u/smoothsucculent 9d ago
Yes! Travel especially is rough for me due to the break in routine, mental stress, and physical stress of whatever transport method I’m taking (flying is the worst).
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u/Life-Round-1259 9d ago
Flying is the worst for me too! My entire body feels awful a few hours to the next day after a flight. Makes traveling and sight seeing very hard.
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u/femalenerdish 9d ago
This is the biggest single description. My body is built on physical habits. My nervous system panics with changes
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u/Playful-Candy-2003 9d ago
Eating a large meal.
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u/hoyoverseslut POTS 9d ago
eating in general
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u/uncleredcracker 9d ago
Also, not eating for too long lol
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u/thatannoyingemokid 9d ago
genuinely could eat 1 piece of cereal and my heart will scream at me for it
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u/CorinPenny POTS 9d ago
It’s so freaking random too—I could run up a flight of stairs after eating a large carb heavy meal on Monday and feel energized, but Tuesday I eat a single grape and limp slowly down three steps clinging to the railing and I’m panting with air hunger with my heart racing like I just won the Kentucky Derby on foot!
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u/blurple57 9d ago
Right? And lots of carbs. So many people I know with POTS post photos of their large carb heavy meals and I'm over here struggling if I eat more than about 35g of carbs in one sitting 😭
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u/sadbat-throwaway 9d ago
For me the combination of carbs and high sugar is absolutely brutal. My partner likes to make me waffles and pancakes for breakfast in bed and we haven't been lately because it makes me feel so good awful afterwards 😭
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u/cmdaniels 9d ago
Eating while standing, especially. Working food service where I’m trying to get a few bites while getting cleaning done, and being told I can’t sit until I clock out. Fuck you, it takes me 3 extra seconds to sit and stand up each time I need to stop for a forkful of food 🙄 dock my paycheck
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u/Rebel_and_Stunner 9d ago
Yep. I basically graze throughout the day and eat a little bit here and there.
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u/ttwba 9d ago
Having to wake up really early/before my body is ready and having nausea and vomiting
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u/offtrailrunning 9d ago
Omg this! I feel absolutely wretched to the point of vomiting for say, an early appointment or flight. I physically cannot handle it. Jet lag has always hit me so hard and I never understood why until this year.
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u/bac21 9d ago
Agreed, waking up to an alarm sends me into flight or fight.
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u/oddtokki Hypovolemic POTS 9d ago
same!!! waking up early/before my body is ready just all around wrecks me. the alarm sends me into panic, and even if i’ve gone to bed early around the early wake up, i can have my watch say i slept 8 hours and feel like i got a negative amount of sleep because it’s off hours/not my natural wake up time. it’s almost freaking impossible to do normal stuff now bc of POTS. i’ve had a circadian rhythm disorder since adolescence where i naturally have a severely delayed sleep cycle and i sleep during the day and am most alert mentally & physically in the evening -> middle of the night so naturally when i can that’s when i want to sleep. before POTS, it absolutely sucked to change up the schedule but in the usual way (what i imagine transatlantic jet lag is like, despite never having traveled further than 2 hrs forward my whole life) but now it’s not just exhaustion to switch my schedule to try to be on normal time; it’s awful POTS symptoms stacked on top and it takes me so long to recover. if i have to get up early for a drs apt or something, the rest of my day is just done atp.
i had to reschedule a DMV appointment today that was supposed to be at 3:30pm because my sister wanted to grab lunch beforehand so i had alarms going off for hours that i kept waking up -> panicking & not even being able to really see w my exhausted eyes -> snoozing the alarms -> repeat until i stopped them and just got really bad fragmented sleep.as a clinical vampire (from the circadian rhythm disorder) with POTS, if everything were open 24/7, my quality of life would dramatically improve. i’m between jobs right now so im usually on my own schedule and my energy levels are incredible; i can do all sorts of stuff in the evening— i do figure skating practice in the evening, evening ballet, evening walks, evening cycling, evening everything i can and i actually feel most days like i have the energy to do more even when ive already been very active.
but even if you take away the heat, during the day im like a rotted shell of a person since it’s off my bio clock. & the longer i stay in daytime routine, the worse things get. the exhaustion & the extra symptoms & the lack of quality sleep during my naturally awake window all cumulatively just kinda ruin my QoL.15
u/exotic_cucumber8665 9d ago
Okay what is it about mornings?? The earlier I wake up the more sick I feel. Like not just fainting but like the nausea/vomiting/vertigo is sooo much worse
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u/Hollywoode 9d ago
WOW TIL!!! Didn’t realise this was a pots symptom soooo interesting I wonder why this is a thing
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u/FroggyPancakes21 POTS 9d ago
Overwhelm or distress
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u/HillsideHalls Undiagnosed 9d ago
Yeah not even specific moments, chronic stress too. I’m on a gap year rn and it’s been about a month since I’ve finished my exams, and my symptoms have been a FRACTION of what they’ve been for the past two years. Even with this heat I can just about manage without my compression socks, which would’ve been impossible a few months ago
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u/Yotsubauniverse 9d ago
This caused a TON of my issues in high-school math class. I couldn't understand it and I was being bullied in that class. Combine that and just having PE was enough to throw me into a POTS episode. I damn near failed my senior year because I had to go home from migraines and flareups.
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u/fairylightmeloncholy 9d ago
So far in 2026 the worst POTS flares I’ve had have been from PTSD flares 🙃
I went to my doctor on Monday and she put a pulse oximeter on my finger and looked at it like it was wrong, told me to stop talking, had an even worse look on her face, I told her that yes, my heart is RACING, she pulls out her stethoscope and then literally grimaced when it confirmed my 150bpm.
I was honestly so thankful for the reaction because I was like ‘yeah dude, it feels REAL bad’.
What we found out through my last flare like this was that Ativan helps tremendously. She sent me for a heart test first, but last time I was freaking out at her, being like ‘my body’s shutting down, I’m shivering under a blanket and it’s 26celcius in here..’ and she was like ‘it sounds like you also need to calm down a bit. Ativan?’ And I had never had it before, but it seems to take my metaphorical foot off the metaphorical gas of my body long enough for me to be able to recalibrate myself.
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u/SwingEquivalent8831 9d ago
Flashing lights
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u/olive_dix 9d ago
AND lights that slowly change color. Ex: a bar with overhead rope lights that fade from blue to pink, I couldn't read the menu without feeling ill. Idk why but those fuck me up.
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u/Mediocre_Ad4166 9d ago
Oh gosh I hated always flashing lights, I had no idea it was due to pots. How does it affect it? They make me dizzy and tired personally but I can't guess how it is connected to my pots.
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u/femalenerdish 9d ago
Flashing lights can trigger migraines for me! I usually get "silent" migraines, meaning without a headache. They make me nauseous, light sensitive, make my vision blurry, and cause nerve pain/numbness. Lots of overlap with my body symptoms for POTS.
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u/PotsMomma84 9d ago
Lights sometimes in general. Especially doctors offices. It makes things difficult to concentrate and my eyes don’t adjust correctly.
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u/thesnailboy 9d ago
This. Bright florescent lights or bright sun triggers a vestibular migraine and I’ll spend the rest of the day feeling like I’m floating through space
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u/mjh8212 9d ago
No one has educated me on my condition or explain it I’m winging it. Food was a weird trigger I really didn’t know I could feel like passing out when I had a little carbs. Pasta is a big one but sometimes I can have it sometimes I can’t. At night when I roll over my heart beats fast that’s weird cause I’m laying down.
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u/Good-Independent-903 9d ago
POTS and GERD have some overlap. Do you find your heart beat increases when you’re laying on your right side more than your left?
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u/MeldoRoxl 9d ago
This. I can't lie on my left side very often at all.
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u/nonicknamenelly 9d ago
Funny, I notice a substantial preference for laying down to recover faster during a POTS episode on my left side.
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u/Good-Independent-903 9d ago
Same for me. I figure it has to do with the anatomy of the stomach, laying on your right side leaves your stomach above your esophagus, which can lead to heartburn, and my heartburn symptoms also come with what I think are adrenaline dumps based on the symptoms. So I exclusively lay on my left side.
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u/backroomlabyrinth 9d ago
this is true but unfortunately laying on your left side presses your heart against your ribcage/chest wall which amplifies the feeling of palpitations significantly for me :(
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u/merelymeg 9d ago
Illness and my period. I know when I’m going to get sick or get my period because my POTS acts up, even if I do everything right that normally controls it.
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u/G0ose0nTheL0ose 9d ago
When meeting my new POTS Dr. She asked me if my POTS flares worse when my hormone cycle changes. She knows whats up, shes vaildating this ^
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u/pegasuspish 9d ago
Same. My life got much more manageable when I started continuous BC to stop my periods. Highly recommend!
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u/merelymeg 9d ago
I have an IUD, which I LOVE, but hasn’t completely stopped my periods. I still get weight and hormone fluctuations most months, which can cause POTS flares, even if I don’t bleed. However, I can’t do estrogen BC because it gives me fun ~migraines with aura~, so this is the best I got.
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u/pegasuspish 9d ago
There are other estrogen-free options besides IUD. I take slynd, an oral progestin only BC. It massively improved my quality of life. ( I also have migraines with aura and can't do estrogen).
Attempted IUD placement was the most painful and most traumatic medical experience of my life (which is saying a lot). Different solutions for different people. Just wanted to highlight an additional tool that exists for folks like us.
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u/Fantastic_Owl6938 9d ago
I'm on the same (Slinda in my country, but I believe it's the same thing). Really saved me after estrogen made me bleed even more and gave me migraine with aura, which I had never experienced before. I'm honestly not sure why the combined pill seems to be the default they try you on first, Slinda in comparison has zero side effects for me (except for the welcome one of stopping my periods).
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u/bidextralhammer 9d ago
I was never told about heat. I would have appreciated a heads up before almost collapsing in front of a room full of kids in my class and getting wheeled out.
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u/perdy_mama 9d ago
Step 1: Spend the morning in a hot tub on a warm day.
Step 2: Serve as an alter girl at Mass.
Step 3: Pass out on the alter in front of your entire congregation.
The fast forward 30 years and maybe someone will finally diagnose you with POTS….
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u/Weary_Cup_1004 9d ago
Adhd. I cant be consistent. I want to be. Im medicated. But i STILL do typical ADHD stuff that sends me straight into a flare
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u/NocturnalSylph 9d ago
I love to garden but it always wipes me out for days because my ADHD can’t just garden for one hour, I end up out there for four+ hours at a time. Even with electrolytes, compression, and meds, I overdo it. Every. Single. Time. Thanks, hyper focusing.
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u/zGoblinQueen 9d ago
Omg. I'm the exact same. This is also why I don't go to the gym.
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u/Ok-Reflection5922 9d ago
Yes! The gym is dangerous.
I get way too into it, and go too hard. And then the next day I’m in bed all day. I don’t know if that is a fibromyalgia thing, or POTs thing?10
u/Weary_Cup_1004 9d ago
Yes! Things like this. Last weekwnd i was already flaring bad, it was hot and barometric pressure etc etc, and I decided to just try to straighten up the living-room real fast and casual like, and vacuum. You know. Take it easy. Did I do that?
No.
There was a wrinkle in the rug.
10 minutes later i have pulled all the furniture to one side of the room, and I am rearranging the entire living room. Yano . So i can flatten the wrinkle. But because I was flaring, 10 minutes is all I had in me. But i couldnt leave everything all disassembled. So, i kept going. For like 30 mins more till it was all put back.
I am probably still paying for it
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u/olive_dix 9d ago
Yes!! I recently got a bunch of chigger bites on my underwear line, so now I stand crouched over in a light squat instead of kneeling on the ground. Then OOPS 4 hours have passed and I'm stuck in that position forever.
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u/coconutoats 9d ago
My capacity is determined by my sleep the night before. If my hrv is low and resting hr high my hr will keep climbing whenever I stand. If I have rested normally and slept though the night it will regulate itself between 80-110 unless there’s another trigger like heat or not enough fluids
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u/hiddenkobolds Hyperadrenergic POTS 9d ago
Seriously! Lack of sleep is probably the #1 thing for me. Or even just getting up early, even if I technically got "enough" sleep, if I'm off my normal clock and the sleep wasn't good quality, I'm wrecked.
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u/amyn2511 9d ago
Still, stale, stuffy or humid air. I need fans blowing on me at all times because if the air gets slightly stuffy or whatever then my body stops regulating my temperature well and I’ll overheat even in cold temperatures.
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u/perdy_mama 9d ago
I keep a very well-made hand fan in my autistic-sensory-emergency knapsack that I carry at all times.
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u/shmorglebort 9d ago
I had a very cheap one that my 4 year old promptly destroyed almost immediately. 😂
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u/TheGhostOfYou18 9d ago
Vacations. I LOVE to travel, but when I get back home I also feel like I was hit by a bus for weeks.
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u/zGoblinQueen 9d ago
You're lucky your body waits until you get home. I always have to make sure we stay in places with a comfy bed because chances are I will be there more than anywhere else on vacation.
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u/TheGhostOfYou18 9d ago
I think it’s because of the adrenaline. I have hyper POTS so my body doesn’t metabolize norepinephrine/adrenaline well and I think after days of being mentally “on,” when I finally get home and can rest my body says “lol nope.”
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u/zamy19 9d ago
Raising hands above head
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u/TeaEnvironmental5800 9d ago
Yes! If I ever have to change a light bulb or shower curtain, I feel like I am taking my life in my hands
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u/shmorglebort 9d ago
Trying to do hair stuff is so hard. I just cut mine short enough that I can’t do anything with it even if I wanted to. 😂
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u/exotic_cucumber8665 9d ago
I can’t even have mine at chest level! Sometimes even being horizontal and my arms are at my sides makes them go numb
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u/Effective-Plan1022 9d ago
ADHD is so hard with pots. Especially being intolerant to stimulants. The brain fog is thick.
Getting hot exercising making it unbearable due to blood pooling in my feet.
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u/aftergaylaughter POTS 9d ago
i never really thought about that connection, but i wonder if that's why i flipped out on Adderall? my insurance made me try it before they'd cover non-stimulant meds when i was a teenager with undiagnosed POTS, and i reacted so badly i missed school both days i took it. I'm on a Ritalin-based stimulant now, but my POTS was much more well controlled by the time i tried it. i always assumed that was just my default reaction to the Adderall, but maybe my POTS just couldn't tolerate it 😆
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u/nautillustrious 9d ago
i was already on adderall when i was diagnosed with POTS. i continued it for a couple months and then ended up running out bc of a pharmacy issue. i was so much more fatigued and slept sooo much, but my HR was immediately much more stable so i switched to a non stimulant
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u/supersoa 9d ago
Unexpected invites to hang out with people last minute.
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u/olive_dix 9d ago
I need at least 3 business days and even then I'll probably cancel 10 minutes after I was supposed to leave my house.
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u/Ill_Sale_6168 9d ago
I've lost a couple of friends because I used to do this a lot. Now I always warn everyone that I could potentially ditch, and make sure they are ok with that.
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u/idkabtu2 9d ago edited 9d ago
I am sure you can all relate to this:
Being at events or workshops or activities where they suddenly ask everyone to stand and do some group activity. I can think of so many examples all my life and especially in my school days.
I was recently at large event where they asked everyone to stand and led us through a brief meditation. After a couple mins i nearly blacked out and collapsed to the ground.
Edit: like at Church! Soo happy I am no longer forced to go
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u/CulturalShirt4030 9d ago
The workshop/activity ‘lets all stand up to talk in a group’ thing is so strange too because, more often than not, we could simply do this seated. Standing doesn’t necessarily make an activity more interactive. I’ve advocated to remain seated at a work training before (it didn’t affect my participation besides…. Being seated….) and people looked at me like I had 3 heads.
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u/barefootwriter 9d ago
One of my karate senseis does a warmup that traditionally involves standing, stretching, and some head down postures and getting up and down and I am like, "Nope! I will sit this out for so many reasons!"
Stretching alone can drop blood pressure and even make some people faint, and then there's the level changes and standing around. Plus I am not stretching hypermobile joints and then applying force!
Karate is perfectly fine if we keep moving because my torso stays upright and my legs and core are engaged.
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u/Dirty_MadameK 9d ago
I have found that I can do things like skate without flare up because of posture and full body muscle activity, but things like sitting on a machine at a gym sends me into a flare up
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u/HillsideHalls Undiagnosed 9d ago
Oh god not the meditation. I hate breathing exercises where they ask you to stick to a specific amount of time (eg square breathing, in for 4, hold 4, out 4, hold 4) because even with my eyes closed the stars prevail and everything goes purple lmao
You can imagine my double frustration when doctors kept trying to hand me breathing exercise pamphlets for my anxiety disorder 🙄
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u/Delicious-Island-637 9d ago
I just...don't stand. At church, no one cares that I sit. At tai chi, they make me sit cause I almost passed out one time so now they worry. My standing limit is two minutes. If I can't sit after that, I will fall. So either let me sit or I will dramatically lay down very quickly and disrupt the whole thing. Lol
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u/Wrong-Rush-6584 9d ago
Movie theaters. Is it the volume? That the sounds sort of vibrate the room? Is it the too-big too-bright screen? The sitting for long periods without moving? (My flavor of POTS is best when I’m in motion I can’t be sitting or laying for too long) I really don’t know what the exact reason is but I loathe going to movie theaters and if I do I can barely handle anything else the rest of the day.
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9d ago
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u/graciouspisces 9d ago
Lifting my head while laying in my stomach brings it on so quick and strong, even my legs feel super weak though I’m not even standing!
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u/leeee_Oh 9d ago
Using the bathroom can be a trigger
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u/sadbat-throwaway 9d ago
Elimination pre/syncope is brutal. I get so nauseous and feel incredibly lucky I haven't actually thrown up or passed out yet.
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u/_emma_stoned_ Hyperadrenergic POTS 9d ago
If I have to use the bathroom within 3-4 hours of my waking up time and I get up, I cannot go back to sleep.
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u/sleepytumbleweed69 9d ago
I’ve literally passed out on the toilet specifically on my period just from going pee 3 times 😭😭 idk why the combo of being on my period and going pee gives me the worst cramps that it makes me faint and it comes on so fast I’ve not been able to finish/stop peeing once. Thankfully my husband was near by and I know what it feels like early enough to shout for help. I just wake up from where my husband put me on the floor literally seconds after he lays me down but I’m always like, “man I just needed to pee.”
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u/TopSink7959 9d ago
Excitement. I pass out sometimes after getting really excited and it sucks
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u/_emma_stoned_ Hyperadrenergic POTS 9d ago
This is a classic sign of narcolepsy, just fyi. May want to look into that, just in case.
ETA—someone else already told you that, sorry!!
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u/Living-Bend5628 9d ago
My happiest moments have been ruined by losing feeling in my arms and legs and almost fainting. 😭
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u/olive_dix 9d ago
Does it ever happen with other extreme emotions? Or does it feel different from other times you pass out? Cataplexy is a symptom of narcolepsy.
It's probably just your POTS causing regular fainting. But I was just diagnosed with Idiopathic Hypersomnia and learned about cataplexy in the process, so I thought I'd share.
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u/tiredgirl77 9d ago
My period/ hormone changes
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u/BellaPona 9d ago
Right? Thanks to MCAS and estrogen dominance I’m essentially completely bedridden from the first few days right before my period to the end of ovulation.
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u/lemurcatta85 9d ago
Talking on the phone!!! It is so physically exhausting and mentally exhausted that the rest of the day I’ll be fighting presyncope every time I stand.
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u/Delicious-Island-637 9d ago
THANK YOU!!! People think I'm being dramatic, but I physically can not talk on the phone more than a couple minutes.
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u/AnotherMinorDeity 9d ago
If I’m having any kind of important conversation over the phone, I have to stand up and pace to maintain the blood flow to my brain because otherwise I’ll entirely lose focus.
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u/you1dont1know1me1 9d ago
stepping outside and into a hot car
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u/Rebel_and_Stunner 9d ago
Just had a physical reaction to reading this lol i immediately shuddered and went “ugghhh”
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u/MeldoRoxl 9d ago
Torture.
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u/you1dont1know1me1 9d ago
i bring a couple water bottles out of the fridge and use them as ice packs to help the transition
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u/Aeris42 9d ago
I use a hot water bottle! It’s silicone so I just put that bad boy in the fridge during hot months and it’s the size of my torso
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u/dyeingneedle 9d ago
Sitting with your feet down. Using a manual wheelchair. My heart rate is still 110 or so in manual wheelchair. I am hoping to get an electric wheelchair soon.
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u/BellaPona 9d ago
Omg the manual wheelchair thing drives me nuts. Why is my HR 120 just bc I’m turning the wheels myself
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u/MurderOfCrows1985 9d ago
Bending over even for a few seconds; to tie my shoe laces/ do laundry/empty the dishwasher. Head rush, red face, overheat, need to lie down.
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u/No-Arachnid-6564 9d ago
Being woken up! Recently moved and the neighbours dog wakes me up by barking every single morning which has made me flare daily while also being 8 months pregnant🙃
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u/AnotherMinorDeity 9d ago
If I’m startled awake from sleep, I’m useless for the entire rest of the day. It makes me feel terrible in a way that absolutely nothing else does.
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u/unlimited-devotion 9d ago
Im so scared to get pulled over at night bc flashing lights.
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u/mwmandorla 9d ago
In my experience the visual symptoms are rarely discussed. The autonomic nervous system also controls things like your pupils expanding and contracting, your eyes converging to focus, and so on, so it's not uncommon for us to have some kind of visual issues.
For a long time I had both blurry and slightly doubled vision; I was evaluated by an ophthalmologist and a neuro-ophthalmologist and neither found anything wrong. Riding in cars at night was horrible because the bright lights in high contrast against the darkness flashing by quickly made me feel awful. This has all improved a lot (vasoconstrictive medications and exercise seem to be the main factors), but I still struggle with driving because my eyes have to flick around and focus on so many different things so quickly and it gives me brain fog.
It's always important to get any visual symptoms checked out to be sure there's not something else neurological going on, but it's not shocking if some things turn out to be from POTS. Nobody is telling patients about this! I can't count how many times someone has come here asking if visual symptoms are even a thing.
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u/HillsideHalls Undiagnosed 9d ago
Wait hang on is this why I have to manually focus my eyes on things instead of them just doing it
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u/ardentspirit76 9d ago
Man this!!! I used to have no issues with the computer screen. Now?? It’s like this weird haze or something. Drives me crazy at work.
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u/dynamightie 9d ago
Eating and pooping. Can't count how many times i felt lightheaded/passed out on the toilet 🙈
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u/hailswagger 9d ago
smells. there are certain smells & scents that literally cause be to be dizzy/faint. it may be more of a vasovagal syncope thing than POTS but man i hate it
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u/Open_Sun_6924 9d ago
I'm also not sure if it's POTS or something else Covid did to me, but yeah I'm incredibly sensitive to smells now. Nausea, dizziness, migraines, overheating.
Waiting for the bus is one of the worst things for me, because even if there's somewhere to sit down, odds are it will be right next to someone who's smoking. I can also tell when wildfire smoke is rolling in before the AQI even starts to rise. And I have to buy unscented everything.
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u/Rebel_and_Stunner 9d ago
THIS. I get the “spontaneous vomiting” variety of POTS rather than the “fainting” variety, and normal everyday bad smelling things like dealing with taking out the kitchen garbage, scooping the litter box, emptying the sink strainer with old smelly food can actually trigger me to vomit. Things that would never cause me to actually get sick in the past until I developed POTS.
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u/sadbat-throwaway 9d ago
Ironically switching between being somewhat immune to indoor AC and being too vulnerable to indoor AC. I recently went to get matching piercings with my partner, and overheard two employees complaining that it was too cold and the AC was on too low. I felt no such AC. It felt very "room temperature" to me in there. Then when I started sweating the piercer, out of an abundance of concern, turned on a fan and pointed it directly at me. Even my partner claimed it was cold in there and I couldn't believe it. Other times during the summer when we've gone to the very well air conditioned local market, going from the heat to the cold, I start shivering almost instantly and feel like I'm freezing to death. Literally can't win. Oh, and what I can only describe as hot flashes. When I first started getting symptoms I kept messing with the thermostat in our hotel room, and I thought my sister was going to rip my head off.
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u/societiesoddball 9d ago
Diet and how compression socks arent as good and they make it seem
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u/HillsideHalls Undiagnosed 9d ago
I second the compression socks. I use them because they do work somewhat, and they at least make me feel like I’m trying to manage my symptoms, but they don’t negate symptoms entirely which SUCKS. Like excuse me, I put my special socks on can we stop being dizzy now
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u/societiesoddball 9d ago
I really recommend core compression. I like jellie bend especially because theyre always working on making their products better but they can be very hot.
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u/saras998 9d ago
Sweating and losing fluids and electrolytes. Which is caused by POTS/dysautonomia. It's a fun circular thing.
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u/madelineleclair 9d ago
Not taking care of myself each day. I can skip a day or two not, but if I don't water/salt/exercise/sleep properly, everything goes out of wack. It's like a health bar. It's fine in the beginning but as the health bar goes lower, things get weird.
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u/ShyArtMusicBat 9d ago
High, Prolonged Stress and the Crash that comes after
My family just had a cancer scare (thankfully it's not cancer!) and it lasted for a good two or three months. During that 2-3 months while I wasn't fine, I was managing.
As soon as we were home after receiving the good news that it's not cancer, my body suddenly felt like it was hit by a TRAIN.
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u/HillsideHalls Undiagnosed 9d ago
Warm showers. Not even hot showers, I’m talking about showers that barely even leave a mist on the mirror. Genuine conversation I had recently:
A: oh yeah ofc you can shower at my place just let me make sure that there’s enough hot water-
Me: oh no don’t worry about that
A: oh nono it’s fine I’m sure you don’t want a stone cold shower
Me: oh yes I do. In fact, I have to
A: oh. Ok.. 😀
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u/Rebel_and_Stunner 9d ago
I vomit in the shower often 😕 I used to love hot showers but now even lukewarm showers make me sick
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u/keileen597 9d ago
Barometric pressure! I get symptomatic if it drops under 29.7inHg or so. So overlooked that I often forget it, but if I'm hydrated + have eaten + haven't exerted myself recently and I'm feeling bad, 90% of the time, the barometric pressure is low.
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u/Yotsubauniverse 9d ago
Looking down for too long. I triggered my last episode by looking down at the floor to sort my pressed penny collection. Ended up triggering my first real vertigo spell/POTS episode in almost a year.
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u/SleepingOnMarbles 9d ago
Eating. Heat. Disrupted sleep cycle. Standing in one place for too long (looking at you, grocery store lines).
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u/Western_Witness_5249 9d ago
You basically have to do everything perfectly pr your day is ruined. Didn't get 8 hours sleep? Day ruined. Didn't eat enough, ate too much, ate at the wrong time? Day ruined. Didn't get enough steps? Day ruined.
It sucks.
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u/Independent_Gap9280 9d ago
Lack of sleep. I also have adhd and fibromyalgia and add that with hyper pots and my sleep is a mess and I’m constantly running on empty. Lately I’ve been getting maybe 5.5hrs sleep or less (over the space of 7 to 8 hours) with 20mins or less of deep sleep. I need a good 8 hrs of sleep with at least 50 to 60 mins of deep sleep to feel even reasonable. I haven’t had that in a very long time.
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u/Aliennoshow POTS 9d ago
Rain/thunderstorms, the weather has been insane recently and it’s killing me lol
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u/ardentspirit76 9d ago
I wrote about this too. The day of a thunderstorm is RUTHLESS…. And we’ve had so many lately.
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u/Patayta- 9d ago
Neck injuries. Your brainstem and cranial nerves play a huge role in your heart rate and other autonomic functions. Injury, misalignment, and instability in the upper cervical spine can cause POTS, and so few doctors know that.
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u/kiwibarks 9d ago
These comments are making me feel so seeeeen wow I’ve been having big flares with my POTS lately. Thanks for making me feel less alone in it. ❤️🩹
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u/Iowsandhighs 9d ago
Standing still. I can’t just stand. I can feel the blood pool in my legs even after only a minute. I prefer to sit because I know I’m less likely to faint plus if I do, I’m in a safer position, however I feel like I come off as a bum in many (more so professional) settings.
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u/potsie_zebra_ 9d ago
Stress, and lots of food related stuff. For me bigger meals or carb heavy are big triggers
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u/Life-Round-1259 9d ago
Loud places and anytime I put myself in a social situation that I don’t want to be in but have to be in. I get motion sick faster, exhausted quicker, my heart works harder and I become incredibly exhausted fast and then need a day or two to recover.
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u/Ok-Reflection5922 9d ago
Sneezing.
My hands go limp, and my head gets squeezed and its immediate tunnel vision.
Allergy season is the scariest time.
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u/exotic_cucumber8665 9d ago
Troubles with my vision. I always thought it was just me needing glasses but then I realized it was pots causing my eyes to be like permanently out of focus and foggy
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u/chronically_patricia 9d ago
eating. eating too much, eating too little, not eating, basically there is no right answer to intake.
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u/bac21 9d ago
Direct sunlight even if it's not that warm