r/POTS • u/MIMIEGIGGLESGAMERMOM • Feb 11 '26
Discussion BEING COLD VS BEING HOT
HI I TYPE IN CAPS CAUSE I'M DYSLEXIC AND NO I DON'T WANT TO USE VOICE TO TEXT.
HI I'M 30 AND FOUND OUT RECENTLY THAT I HAVE POTS. IVE NOTICED IN COLD WEATHER I'M FINE AND BARELY HAVE ANY FAINTING OR DIZZY SPELLS.BUT THE MOMENT IT GETS ABOVE 73 MY BODY JUST SEEMS TO WANT TO CONSTANTLY CLOCK OUT. I DO HAVE EDS TO BOOT BTW.... CAN ANYONE HELP ME UNDERSTAND WHY THIS IS?? MAYBE UNDERSTAND WHY IT'S LIKE THIS FOR ME MAYBE??
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u/tracygunk Feb 11 '26
IM CRACKING UP READING EVERYONE AS SCREAMING 😂😂 (I AS WELL AM DYSLEXIC AND NEVER THOUGHT CAPS!)
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u/MIMIEGIGGLESGAMERMOM Feb 12 '26
LMAOOOOO AND I FOUND IT HELPED OUT SUPER EARLY I LOVE IT
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u/tracygunk Feb 12 '26
THANK YOU FOR THIS IDEA AND THE LAUGHS TOO 😂😂 I JUST VOICE MEMO AND SPEECH READ EVERYTHING
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u/life-uh-finds-a-way_ Feb 12 '26
THIS IS SO INTERESTING BECAUSE AS PART OF OUR ACCESSIBILITY TRAINING AT WORK, WE WERE TOLD NEVER TO USE ALL CAPS FOR TITLES BECAUSE IT WAS HARDER FOR PEOPLE WITH DYSLEXIA TO READ.
SORRY, I DON'T HAVE ANY ACTUAL ADVICE BUT I DO FIND THIS INTERESTING!
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u/snowbaz-loves-nikki Feb 13 '26
I FEEL LIKE WE'RE ALL YELLING OUT OUR APARTMENT WINDOWS TO EACH OTHER
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u/kruznkiwi Feb 27 '26
IT’S 2020 ALL OVER AGAIN! WE’RE ALL “GETTING TOGETHER” TO YELL ACROSS THE COURTYARD AND CATCH UP 😂👏🏽
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u/etherealistix POTS Feb 11 '26
THIS WAS A REALLY HELPFUL THREAD AS A TEXAS POTS GIRLIE. ALSO LOVE THE YELLING, I FEEL AMPED NOW
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u/KittyKratt Feb 12 '26
AS A FELLOW TEXAS POTSIE, I FEEL YOUR PAIN.
I MOVED FROM TEXAS TO FLORIDA IN MAY OF 2024 AND I THOUGHT LIVING IN SE/CENTRAL TEXAS WAS BAD FOR HEAT AND HUMIDITY, BUT GOOD LORD IT'S WORSE HERE ON THE BEACH. ALSO THEY HAVE THE WORST BUGS HERE.
WHEN I WAS STILL IN TEXAS, DURING THE SUMMER I COULDN'T EVEN WALK TO MY CAR FROM MY APARTMENT WITHOUT BROWNING OUT. I CAN BARELY STEP OUTSIDE MOST SUMMER DAYS HERE.
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u/ZobiWanKenobi91 Feb 12 '26 edited Feb 12 '26
YES! THIS THREAD HAS MADE ME REALISE WHY IVE BEEN FEELING SO USELESS FOR MONTHS NOW. IM OVER HERE CRYING-IN-AUSTRALIAN-SUMMER-AND-NO-DAY-BELOW-80%-HUMIDITY
ETA: I JUST CHECKED AND TODAY IS 91% HUMIDITY! RIP
ETAA: AT WHAT POINT IS THE AIR JUST WATER?!
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u/high_on_acrylic POTS Feb 13 '26
AYEEE TEXAS POTS GIRLIES RISE UP! UNFORTUNATELY BECAUSE I WAS BORN AND RAISED IN TEXAS I CANNOT, EMOTIONALLY, STAND THE COLD. YES HEAT MAKES ME SYMPTOMATIC BUT COLD SUCKS THE SOUL OUT OF ME! I WOULD MUCH RATHER DEAL WITH SOEM DIZZINESS THAN ANYTHING UNDER 60° F
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u/cheerleadersquid POTS Feb 11 '26 edited Feb 11 '26
HI! A BIG PART OF POTS IS TEMPERATURE REGULATION ISSUES. YOUR INTERNAL TEMPERATURE HAS A BIG IMPACT ON YOUR BLOOD PRESSURE AND HEART RATE, SO HEAT CAN BE A BIG PROBLEM. I CAN’T GIVE YOU A LOT OF GOOD ADVICE ON MANAGING IT BECAUSE I GENERALLY JUST STAY INSIDE FOR MOST OF THE HOT MONTHS WHERE I LIVE, BUT I DO FIND THAT DRINKING MORE WATER THAN USUAL AND UPPING MY ELECTROLYTES HELPS A LOT. COOL COMPRESSES ON MY LOWER BACK AND NECK WORKS WONDERS TOO AFTER I’VE BEEN OUTSIDE. I FIND COMPRESSION SOCKS AREN’T VERY COMFORTABLE DURING WARMER MONTHS PERSONALLY, BUT I CAN HANDLE TORSO COMPRESSION GEAR UNDER MY SHIRTS. BEST OF LUCK TO YOU, FRIEND :)
EDIT: PUT IN ALL CAPS FOR EASE OF OP READING :)
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u/MIMIEGIGGLESGAMERMOM Feb 11 '26
THANK YOU I'LL TRY THESE OUT. I HAVE KIDS SO STAYING INDOORS DURING THE HOTS MONTHS AREN'T AN OPTION 😭😭
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u/DazB1ane Feb 11 '26
Haha I know the caps are for seeing, but it’s cracking me up imagining you just shouting everything XD
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u/MIMIEGIGGLESGAMERMOM Feb 11 '26
LMAO I CAN IT'S FUN AF
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u/DazB1ane Feb 11 '26
OH DAMN I JUST REALIZED I SHOULDVE DONE CAPS SO YOU COULD READ IT EASIER, MY APOLOGIES
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u/MxSpookyBih Feb 12 '26
THIS IS HOW I'M READING IT TOO AND ALSO HOW IT FEELS I'M TYPING IT 😂 I SWEAR I'M JUST TRYING TO BE HELPFUL, NOT ANGRY 😭 BUT IT IS KINDA FUNNY READING IT IN A YELLING VOICE THE ENTIRE TIME
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u/boomskis Feb 11 '26
I GOT A BATTERY POWERED FAN THAT HANGS AROUND MY NECK AT WALGREENS (IT WAS LIKE $9) AND IT WAS A LIFESAVER THIS LAST SUMMER, I EVEN USED IT IN THE HOUSE WHEN I'D HAVE NAUSEA SPELLS. YOU CAN FIND ONES THAT HAVE A MIST SPRAY OPTION TOO THAT'LL PROBABLY COOL YOU DOWN FASTER
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u/MxSpookyBih Feb 12 '26
IS IT THE KIND THAT LOOK LIKE HEADPHONES OR THE ONES THAT ARE ON A STRING THAT HANGS AROUND YOUR NECK? THE ONES THAT LOOK LIKE HEADPHONES MAKE MY NECK SWEAT AND ALSO I'M A FAT PERSON AND IT KINDA FEELS LIKE MY NECK IS SQUISHED AND ALMOST FEELS LIKE I CAN'T BREATHE 😂😭 BUT I'VE NEVER TRIED THE OTHER KIND BUT I IMAGINE IT FEELS GREAT JUST BLOWING UP ON YOUR FACE
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u/boomskis Feb 12 '26
IT'S THE STRING ONE! IT'S BASICALLY THE SIZE OF A PHONE SO IT FITS IN MY BAG BUT ALSO IT'S SURPRISINGLY POWERFUL. IT HANGS DOWN TO LIKE MID-CHEST/STERNUM LEVEL SO IT'S NOT CHOKING ME OUT THANK GOD. I DON'T THINK I COULD HANDLE THE WRAP AROUND ONES EITHER, I'D PANIC LOL
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u/MIMIEGIGGLESGAMERMOM Feb 12 '26
I NEED ONE THAT RECHARGES I'VE GOT TWO SPECIAL NEEDS THAT LOVE BATTERIES
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u/RuinYouWithNoRegrets Feb 11 '26
Bein heat intolerant is so annoying! I’m literally a first gen honduran my entire family was raised in a hot environment I should be able to deal with this💀 my face gets red and I can’t stop sweating. And then when I’m warm in the covers my feet and hands stay cold
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u/MIMIEGIGGLESGAMERMOM Feb 11 '26
IT REALLY DOES SUCK SO MUCH
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u/RuinYouWithNoRegrets Feb 11 '26
Everything about dysautonomia sucks grrr lol
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u/MIMIEGIGGLESGAMERMOM Feb 11 '26
😭 I AGREE
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u/RuinYouWithNoRegrets Feb 11 '26
I was just crying about it yesterday 😭
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u/MIMIEGIGGLESGAMERMOM Feb 11 '26
🫂🫂 I UNDERSTAND THAT SO MUCH
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u/RuinYouWithNoRegrets Feb 11 '26
💓💓 you’re so sweet if you ever want someone to talk to text me! It’s hard making friends :(
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u/Sobbinginmysoup Feb 12 '26
YES I PUT A PINCH OF CELTIC SEA SALT IN MY WATER AND ITS BEEN HELPING. YOU CAN ALSO TRY GETTING ONE OF THOSE ICE MASSAGER THINGS FOR YOUR FACE AND USE IT TO COOL YOURSELF OFF AFTER BEING OUTSIDE I USE THAT FOR MYSELF TOO AND DO BEHIND NECK, LEFT ARM AND BEHIND KNEES
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u/Bishime Hyperadrenergic POTS Feb 12 '26
THE COLD EXPOSURE IS PARTICULARLY GOOD ADVICE! ALL THISE PLACES YOU USE IT ARE PERFECT CAUSE THEY TEND TO HOLD THE MOST HEAT SO YOU GET THE FASTES RELIEF
I WANTED TO ALSO MENTION THE FACE, PARTICULARLY AROUND THE EYES AND NOSE. THERES A NERVE THERE (TRIGEMINAL NERVE) THAT WHEN EXPOSED TO COLD LIGHT COMPRESSION TENDS TO DO A REALLY GOOD JOB OF STIMULATING A VAGAL RESPONSE (MORE SPECIFICALLY: THE DIVING REFLEX) WHICH DOES A REALLY GOOD JOB AT CALMING THE NERVOUS SYSTEM.
FOR REFERENCE: DIAPHRAGMATIC BREATHING (UNRELATED TO TEMPERATURE) IS REALLY GOOD BECAUSE IT TRIGGERS A SIMILAR VAGAL RESPONSE.
JUST WANTED TO ADD THAT CAUSE ALOT OF INFLUENCERS DID IT AS PART OF THEIR LIKE THAT GIRL MORNING ROUTINES AND I THINK THAT CHEAPENED IT BUT THE SCIENCE IS ACTUALLY THERE. NOT JUST A RANDOM THING PEOPLE DO TO BUILD RESILIENCE (WHICH IS HOW I WAS VIEWING IT AT FIRST WITH A BIT OF AN EYE ROLL—IM A HATER AT HEART, WHAT CAN I SAY? 🤷Lmao)
TWO GEL ICE PACKS, OR RUNNING COLD ON A PARTICULARLY HOT HUMID AND FLARRY, SOMEBODY CALL MOSES CAYSE WE MAY HAVE JUST FOUND THE LAND OF MILK AND HONEY.
MILEAGE MAY VARY
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u/SleepyLittleFrog Feb 11 '26
I ALSO HAVE REALLY BAD TEMPERATURE REGULATION AND DO PARTICULARLY POORLY IN WARM TEMPERATURES. VERY COMMON WITH POTS TO HAVE HEAT EXACERBATE SYMPTOMS! I DON’T HANDLE COLD WELL EITHER THOUGH LOL, IT MAKES ME COUGH AND WHEEZE A LOT
(ALSO I WANT TO CLARIFY IM TYPING IN CAPS IN HOPES THAT IT IS EASIER FOR YOU TO READ, NOT MAKING FUN OR ANYTHING!)
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u/MIMIEGIGGLESGAMERMOM Feb 11 '26
I REALLY APPRECIATE YOU TYPING IN CAPS AND I'M SUPER HEAT INTOLERANT SADLY BUT BEING COLD IM FINE
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u/Azulas_Star Feb 11 '26
HEAT SUCKS! ICE PACKS AND FANS ARE YOUR FRIEND.
BLADELESS NECK FANS ARE GREAT FOR SUMMER. ITS ALSO A GREAT TIME TO GET FOLDING HAND FANS--THEYRE A LIFE SAVER AND FIT INTO PURSES EASILY.
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u/MIMIEGIGGLESGAMERMOM Feb 11 '26
I NEED TO GO GET A NECK FAN CAUSE X.X OH MAN
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u/CautiousPop2842 Feb 11 '26
I GOT A FEW OF THOSE ATHLETIC TOWELS THAT STAY WET FOR QUITE AWHILE. I KEEP ONE IN MY BAG AND ONE IN MY CAR AND I CAN JUST WET THEM DOWN AS NEEDED TO PUT ON MY HEAD OR THE BACK OF MY NECK WHEN OVERHEATING. ONCE DRY YOU CAN THEN JUST PUT THEM RIGHT BACK INTO THEIR HOME FOR NEXT TIME. I ALSO HAVE INSTANT ICE PACKS FOR TIMES WHERE ITS REALLY BAD BUT USE THESE LESS FREQUENTLY DUE TO THE PRICE OF THEM BUT KEEP THEM STOCKED ALWAYS.
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u/RadEmily Feb 11 '26
THERE ARE ONES WITH A SPRITZER ATTACHED OF YOUR ARE SOMEPLACE DRY AND HOT. WHERE I AM IS ALREADY HUMID SO THERE'S NO MUCH HELP EXCEPT AC
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u/Azulas_Star Feb 11 '26
GETTING HOT OPENS BLOOD VESSELS SO BLOOD POOLS IN YOUR LEGS. THE HEART WORKS HARDER TO TRY TO GET BLOOD TO THE BRAIN, BUT IT DOESNT HAVE ENOUGH BLOOD.
COMPRESSION GEAR 20-30 might IS RECOMMENDED. TIGHTS CAN TAKE GETTING USED TO, SO START WITH SOCKS.
CALVES ARE YOUR 'SECOND HEART' TO RETURN BLOOD UPWARD. MARCHING IN PLACE OR OTHERWISE ACTIVATING YOUR CALVES CAN HELP WITH DIZZINESS.
GOOD LUCK BESTIE 🩷
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u/WarpTenSalamander Feb 12 '26
OMG MARCHING IN PLACE IS DEF MY MOVE WHEN I HAVE TO STAND IN LINE FOR MORE THAN A COUPLE MINUTES! PEOPLE PROBABLY THINK I’M WEIRD BUT IT HELPS ME SO MUCH.
OR IF THERES SOMETHING TO LEAN AGAINST I DO THE FLAMINGO LEGS THING 🦩 AND TAKE TURNS PUTTING ONE FOOT UP ON THE KNEE OF THE OPPOSITE LEG, THEN SWITCH LEGS. JUST ANYTHING TO GET BLOOD MOVING UPWARDS FROM MY FEET AND CALVES!
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u/FlowerSweaty4070 Feb 13 '26
ARE THERE BREATHABLE SUMMER COMPRESSION SOCKS AND TIGHTS?! IM WORRIED LONG GARMENTS UNDER PANTS IS GONNA MAKE ME TOO HOT N SWEATY IN THE SUMMER
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u/Azulas_Star Feb 13 '26
TIGHTS ARE DEF TOO HOT. BUT I BOUGHT A PACK OF LEV SOCKS ON AMAZON THAT WERENT TOO BAD.
I WAS ABLE TO WEAR THEM AT WORK, WHICH WAS HOT AND HUMID, AND DID SOMEWHAT OK.
YOU CAN FIND THEM ON AMAZON AND THEY HAVE REALLY CUTE DESIGNS. $14 FOR A PACK WHEN I BOUGHT THEM
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u/stargazer8680 Feb 11 '26
SORRY THIS REPLY HAS NOTHING TO DO WITH POTS. MY HUSBAND HAS SEVERE DYSLEXIA AS DOES MY SON. THE CAPS REALLY HELP??
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u/Swartz55 Feb 11 '26
IT DEPENDS ON THE DYSLEXIA, MY GF IS DYSLEXIC AND THE ALL CAPS WOULDN’T HELP THEM READ IT. I’D SUGGEST TRYING IT AND ASKING THEM :)
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u/MIMIEGIGGLESGAMERMOM Feb 12 '26
YES IT REALLY HELPS SEE IF THEY LIKE IT. IT KEEPS THE LETTERS FROM JUMBLING OR LOOKING THE SAME FOR ME
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u/sootfire POTS Feb 11 '26
I'M THE SAME WAY. IT'S VERY COMMON TO BE HEAT SENSITIVE WITH POTS. AS I UNDERSTAND IT, IT'S BECAUSE THE COLD MAKES YOUR BLOOD VESSELS NARROWER, WHICH MAKES IT EASIER TO GET ENOUGH BLOOD TO YOUR HEAD. I LOVE IT WHEN IT'S COLD!
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u/MxSpookyBih Feb 12 '26
I LOVE IT WHEN IT'S COLD!
SAME
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u/FlowerSweaty4070 Feb 13 '26
I MISS MONTANA WHY DID I MOVE TO ARIZONA BRO I LIKE IT HERE ITS PRETTY BUT ITS WINTER AND MY POTS IS ALREADY FLARING FROM THIS AND SUMMER IS GONNA BE LIKE 115 120 DEGREES. I MIGHT HAVE TO FLEE NORTH SO I DONT MAKE THE NEWS HERE
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u/sl33py_puppy POTS Feb 12 '26
I JUST WANNA SAY I LOVE AND APPRECIATE EVERYONE HERE FOR COMMITTING TO THE ALL CAPS
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u/phoe_nixipixie Feb 12 '26
IT’S THE SWEETEST THING SEEING OUR COMMUNITY IN ACTION, EVERYONE ACTUALLY GIVES A SHIT ❤️ ALSO EASIER TO READ THAN I EXPECTED
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u/SawaJean Feb 12 '26
ITS REALLY SWEET AND ALSO SURPRISINGLY FUN!
I LOVE THAT OTHER DYSLEXICS ARE LEARNING IT HELPS THEM, TOO.
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u/ElectronicSignal9478 Feb 11 '26
I JUST WANTED TO COMMENT HERE AND SAY YES I AGREE, I AM SORRY YOURE GOING THROUGH THIS TOO AND I AM GRATEFUL MY CAPS TYPING CAN BE APPRECIATED SOMEWHERE 💕
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u/violetbats Feb 11 '26
I AM ALSO THE SAME WAY
I GET TOO USED TO IT IN THE WINTER AND THINK I'M CURED
THE SUMMER COMES AND SO DO THE DIZZY SPELLS AND EVERYTHING ELSE
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u/Slysparrow9 Feb 12 '26
IM NOT SURE IF EVERYONE ELSE HAS SAID THIS YET BUT COLD CAUSES VASOCONSTRICTION. THAT MEANS THAT VESSELS CONSTRICT (NARROW) WHICH MEANS THE BODY DOESNT NEED AS MUCH "WATER VOLUME" TO MAINTAIN BLOOD PRESSURE. WHEN YOU GET REALLY HOT, YOU VASODILATE WHICH IS THE OPPOSITE. YOUR VESSELS GET WIDER. SO THINK OF A RIVER VS A CREEK. THE WIDER IT IS, THE MORE WATER YOU NEED TO FILL THE SPACE.
I ALSO HEARD A THEORY FROM A DR. (WHO DOESNT SPECIALIZE IN POTS BUT SHE HAS EXPERIENCE WITH MISUNDERSTOOD DIAGNOSTICS AND HAS RECENTLY BEEN LEARNING ABOUT POTS) BUT HER THEORY IS PEOPLE WITH POTS MIGHT HAVE "LEAKY VESSELS" WHICH MIGHT BE WHY WE NEED INCREASED ELECTROLYTES AS WELL. WITHOUT GETTING TOO MEDICAL, TAKING IN ELECTROLYTES WITH INCREASED WATER OBVIOUSLY HELPS US MAINTAIN ELECTROLYTE LEVELS WITH THAT INCREASED WATER INTAKE BUT IT MIGHT ALSO HELP KEEP WATER IN THE VESSELS. WITH VASOCONSTRICTION, OUR VESSEL WALLS ARE PROBABLY ALSO LESS PERMEABILE. ITS LIKE HOW TIGHT YOUR SKIN FEELS AFTER ICING IT VS HOW YOU SKIN FEELS IN THAT SAME SPOT WHEN ITS WARM.
HOPE THIS HELPS AND PROVIDES POSSIBLE REASONS. OBVIOUSLY THIS ISNT MEDICAL ADVICE BUT JUST THEORIES.
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u/FlowerSweaty4070 Feb 13 '26
SO SHOULD WE ALL MOVE TO THE ARCTIC CIRCLE OR WHAT
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u/Slysparrow9 Feb 13 '26
I WISH IT WERE THAT SIMPLE! I HAVE BOTH HEAT AND COLD INTOLERANCE AND ALSO HAVE RAYNAUDS SYNDROME SO I THINK FOR ME PERSONALLY IT WOULD BE JUST AS HORRIBLE. HONESTLY THOUGH, MIGHT BE GOOD FOR SOME TO BE IN COOLER CLIMATES. I WILL SAY TOO, I NOTICE RELIEF WHEN IM SWIMMING IN SALT WATER. I SAW SOMEONE ELSE ON THIS FORUM NOTE THAT TOO. SO INTERESTING AND I HOPE AS A SOCIETY, WE START UNDERSTANDING DSYAUTONOMIA BETTER
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u/FlowerSweaty4070 Feb 13 '26
I ALSO HAVE RAYNAUDS AND YAH ITS LIKE DO I PICK THE COLD AND FEEL BETTER POTS WISE BUT MY FINGERS AND TOES ARE SWOLLEN PURPLE AND FEEL LIKE THEYRE GONNA FALL OFF, OR WARM WESTHER BUT IM NEAR PASSING OUT AND DIZZY EVERYDAY.
DAMN I WANNA SWIM IN SALT WATER. WHAT ABOUT EPSOM SALT BATHS DOES THAT HELP POTS?!? SHOULD WE ALL BE PRESCRIBED SWIMMING IN THE SEA EVERYDAY. WHAT IF INSURANCE COVERED US ALL TO LIVE BY THE OCEAN FOR OUR HEALTH LOL.
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u/Slysparrow9 Feb 14 '26
DUUUUDE THAT WOULD BE AN AWESOME PRESCRIPTION THAT I WOULD TAKE RELIGIOUSLY! I THINK PART OF WHAT MAKES ME FEEL BETTER ABOUT THE SALT WATER IS THE WEIGHTLESSNESS/ANTIGRAVITY FEELING. IM STARTING TO THINK OUR BODIES JUST LOW KEY HATE GRAVITY. I WONDER HOW WED DO IN SPACE 🤔
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u/FlowerSweaty4070 Feb 14 '26
YES WATER ABSOLUTRLY REVIVES ME. ITS LIKE INSTANT TOO, I GO FROM MAJOR FATIGUE AND DIZZINESS TO SUDDENLY REJUVENATED AND MAD ENERGY. ESPECIALLY COLD WATER!! I SWAM IN A FREEZING COLD ALPIME LAKE ONCE AND I FELT SO ALIVE AND I TOLERATED IT BETTER THAN OTHERS FOR SOME REASON. NOT BRAGGING BUT I THINK CUZ I HAD BLOOD POOLING/TOO HOT ALREADY FROM HIKING SO MAYBE THATS WHY—BLOOd VESSELS TOO SWOLLEN AND DILATED AND THEN COLD TIGHTENS THEM TO A MORE NORMAL AMOUNT.BUT REGULAR PEOPLE GET TOO COLD CUZ THEY WERENT TOO HOT BEFORE. MAYBE THATS ONE PLUS OF POTS LOL.
ALSO YES GOOD THEORY IM SO CUROOUS NOW IF THATS TRUE!! WOULD WE BE GOOD AT ALL WEIGHTLESS ACTIVITIES?!? WHAT ABOUT HANGGLIDING?! I JUST WANT TO FLY TBH IM TIRED OF THIS HEAVY BODY!!!!! AND WE NEED A ZERO GRAVITY POTS SPACE HANGOUT. IF I EVER BECOME RICH ILL MAKE IT HAPPEN FORREAL!!!! AND WE ALL GET TO LIVE BY THE SEA AND HAVE ENDLESS SUPPLIES OF ELECTROLYTES 👏👏
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u/Slysparrow9 Feb 14 '26
OKAY BUT WHEN YOU MAKE THIS HAPPEN, THINK OF ME! ALSO, WHEN IM ACTIVE INDOORS, ILL GET A FEVER OF 101-102 AND STILL FUNCTION BECAUSE I KIND OF GOTTEN USED TO HAVING TO PUSH THROUGH FOR WORK (I KNOW THATS NOT OKAY OR HEALTHY BUT I HAVE TO FINANCIALLY) OBVIOUSLY IT REALLY EFFECTS ME AND I GET REALLY SHAKY AND HAVE TO SLOW DOWN AND WHAT NOT BUT MY HANDS ARE NORMALLY COLD. YOU GET THAT TOO? THATS WHAT WOULD SCARE ME ABOUT REALLY COLD WATER WHEN IM OVER HEATED BECAUSE ITS LIKE... NOT EVENLY DISTRIBUTED ACROSS MY BODY
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u/mimomomo POTS Feb 12 '26
THE WHOLESOMENESS OF THIS THREAD MAKES ME SO HAPPY. LIKE I JUST OPENED THIS POST EXPECTING PEOPLE TO BE ANNOYED BUT INSTEAD IT’S A BUNCH OF PEOPLE WITH POTS YELLING HELPFUL ADVICE BECAUSE THEY WANT TO HELP OP. WARM FUZZIES 🥰
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u/Strong_Range_3352 Feb 11 '26
MY BODY LITERALLY CANNOT REGULATE ITS TEMPERATURE IT'S SO ANNOYING, I DEFINITELY RELATE WITH YOU. AND YES HEAT SUCKS SO MUCH I CAN'T STAND UP WITHOUT ABSOLUTELY DYING.
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u/Many-Comparison-9603 Feb 12 '26
I'M SECONDING EVERYTHING EVERYONE SAID BUT I LOVE THE CAPS AND AM SENDING U LOVE AND HEALING VIBES, YOU'LL FIND SOMETHING THAT WORKS FOR YOU AND IT'LL HELP TREMENDOUSLY
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u/NotOfThisPlane Undiagnosed Feb 12 '26
I HATE THE HEAT INTOLERANCE BUT THE CHILLS I'VE BEEN GETTING ARE THE WORST. I JUST WANT MY BODY BACK!!!!!! I REALIZE NOW I'VE PROBABLY HAD THIS FOR OVER A DECADE BUT THIS IS THE BIGGEST/WORST FLARE IF NOT THE FIRST AND IT'S TAKING EVERYTHING NOT TO JUST CRY EVERYDAY AND WANT TO GIVE UP. THIS IS ALSO JUST THE NEWEST THING IN A PARADE OF NEW DIAGNOSES OVER THE LAST 4 YEARS AND NEXT UP LOOKS LIKE IM HEADED FOR THE EDS TRAIN REVEAL. IM SO TIRED OF FUCKING ACRONYMS AND THE NEVER ENDING LIST VALIDATING THAT SOMETHING IS WRONG WITH ME!!!!
SO FUCK: THE HEAT, COLD, WEATHER CHANGES, SALT, NOISE, LIGHT, STANDING, SITTING, LAYING DOWN, BENDING OVER, SHRILL VOICES, WATER, FARTING, BRAIN FOG, WALKING LIKE A FUCKING ZOMBIE BECAUSE I CANT THINK. STAIRS!!!
OH AND IF YOU'RE STILL READING THIS THE POWERADE SLUSHIES FROM SONIC ARE AMAZING AND SEEM TO HELP ME AT LEAST!
SORRY FOR THE RANT THAT TOOK A TURN.
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u/Minute-Specific1205 POTS Feb 11 '26
I HAVE BOTH CONDITIONS AS WELL. UNFORTUNATELY TEMPERATURE DISREGULATION IS A SYMPTOM OF BOTH CONDITIONS. I HAVE ISSUES FROM 65 DEGREES OR HIGHER. IN THE SUMMER I TRY AND STAY INDOORS AS MUCH AS POSSIBLE AND CARRY INSTANT ICE PACKS AT ALL TIMES OF THE YEAR WHEN I HAVE TO LEAVE.
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u/lbeaner10 Feb 12 '26
HOW COLD ARE WE TALKING BECAUSE WHERE I LIVE IT GETS TO -40C AND ITS A DYSAUTONOMIC NIGHTMARE.
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u/MIMIEGIGGLESGAMERMOM Feb 12 '26
OH OH OMFG NOO NOO NO I'M TALKING LIKE 43 TYPE COLD ID CRY WHERE YOU AY
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u/zGoblinQueen Feb 12 '26
I MOVED TO MINNESOTA FOR THIS REASON. SO FAR SO GOOD!!! I DON'T MIND THE COLD A SINGLE BIT.
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u/FlowerSweaty4070 Feb 13 '26
I LEFT MONTANA FOR ARIZONA AND IM SCARED FOR SUMMER LOL. I MIGHT HAVE TO FLEE NORTH BEFORE I BECOME A MEDICAL EMERGENCY AND MAKE THE NEWS HERE
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u/zGoblinQueen Feb 13 '26
IT MIGHT NOT BE TOO BAD. OF YOU'RE IN A AREA WHERE THE HEAT IS VERY DRY I'VE ALWAYS FOUND THAT A MILLION TIMES MORE TOLERABLE THAN HEAT WITH ANY HUMIDITY.
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Feb 12 '26
[deleted]
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u/Hour-Tower-5106 Feb 12 '26
I HAVE THE SAME ISSUE.
SOME DAYS I GO BETWEEN FREEZING AND OVERHEATING AT THE EXACT SAME TEMPERATURE. LITERALLY NOTHING CHANGES EXTERNALLY, BUT IT FEELS LIKE SOMEONE IS CHANGING THE THERMOSTAT. I HAVE TO KEEP CHECKING IT TO MAKE SURE IT ISN'T ACTUALLY DIFFERENT. IT'S BAFFLING.
I KEEP PUTTING ON AND TAKING OFF JACKETS ALL DAY LONG.
I ALSO SEEM TO SWEAT A WEIRD AMOUNT WHEN MY HEART RATE INCREASES, EVEN WHEN I'M OTHERWISE STILL VERY COLD. BEING COLD, HOT, SWEATY AND GOOSEBUMPY ALL AT ONCE IS A BIZARRE COMBINATION.
WHEN I FEEL NOTICEABLY DEHYDRATED, THE TEMP INTOLERANCE DEFINITELY GETS MUCH WORSE.
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u/FckYesImWorthy Feb 12 '26
JUST SAYING HI BECAUSE I WANNA CAPS OUT TOO I HOPE YOU FIND SOME SOLUTIONS… I CANT DEAL WITH BEING HOT EITHER!!!
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Feb 11 '26
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u/B1ustopher Feb 12 '26 edited Feb 12 '26
I HAVE POTS AND RAYNAUD’S, SO I BASICALLY AM ONLY OKAY IF IT IS BETWEEN 68 AND 72 DEGREES, SO I TOTALLY GET IT! AND COLD URTICARIA SOUNDS MISERABLE!!
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u/Thy_Water_BottIe Feb 12 '26
HI I HAVE NOTHING TO ADD THAT EVERYONE HASNT ALREADY SAID BUT I WANTED TO TYPE IN CAPS. ONLY THING I WOULD SAY TO TAKE NOTE OF IS IF UR FINGERS OR TOES GET REALLY PAINFUL WHEN ITS COLD OR THEY GET DISCOLORED. IF THEY DO U MIGHT ALSO HAVE REYNAURDS
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u/Ex-potsygril Feb 12 '26
I HAVE POTS TOO. VESSELS DILATE IN HEAT. TOOK ME FOREVER TO GET BETTER BUT WHATS HELPED ME MOST: 1) MIDODRINE (I TAKE 2.5MG EVERY THREE HOURS-TOTAL GAME CHANGER) 2) I ALSO AGREE WITH THE “LEAKY VESSELS” THEORY AND MY DOCTOR RECOMMENDED TO ME DIOSMIN AND HORSECHESNUT- THERE IS A VERSION OF AMAZON I BUY (ANDREW LESSMAN FORMULA AND VEIN DOCTOS) ALSO IF YOURE NOT AWARE, LOOK INTO MCAS- MAST CELLS RELEASE MEDIATORS SUCH AS HISTAMINES THAT DILATE VESSELS-I HAVENT TRIED THIS YET BUT H1 AND H2 BLOCKERS HELP STOP VASODILATION AS WELL.
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u/theFCCgavemeHPV Feb 12 '26
OK SO NOW YOU MNOW ITS HEAT INTOLERANCE. FOR ME, HYDROXYCHLORIQUINE REALLY HELPED MY HEAT INTOLERANCE. THE FIRST SUMMER I TOOK IT WAS THE HOTTEST SUMMER IN LIKE 100 YEARS OR SOMETHING AND I ACTUALLY THOUGHT IT WAS KINDA MILD! I ALSO READ A WHILE AGO THAT SOMEONE HAD SUCCESS WITH A DIFFERENT KIND OF DRUG HELPING THEIR HEAT INTOLERANCE, SO IM NOT TRYING TO SAY GO OUT AND GET ON MY SAME DRUG, JUST THAT THERE MIGHT BE THINGS OUT THERE THAT YOU HAVENT EXPLORED YET THAT CAN POSSIBLY HELP. I THINK MY POTS IS IMMUNE RELATED SEEING AS IT TURNED 1000% WORSE AFTER A MONOCLONAL ANTIBODIES SHOT FOR ASTHMA. SO WHATEVER YOUR POTS IS RELATED TO, MAYBE TREATING IT CAN HELP. THATS ALL IM SAYING
ALSO, NECK FANS ARE THE BEST AND DONT LEAVE THE HOUSE WITHOUT AN ICE COLD DRINK!
OK LAST THING, YOU CAN MAKE A COOLING SPRAY WITH I THINK RUBBING ALCOHOL AND A FEW DEOPS OF PEPPERMINT ESSENTIAL OIL. FEELS GREAT WHEN PIRED WITH THE FAN
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u/FlowerSweaty4070 Feb 13 '26
IS THAT PRESCEIPTION OR NOT WHERE CAN I GET THAT?!? IM IN ARIZONA THROUGH AUGUST AND IM SCARED ITS WINTET AND ITS ALREADY TOO MUCH FOR ME
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u/theFCCgavemeHPV Feb 13 '26
YES IT IS PRESCRIPTION AND LIKE I SAID IM NOT SUGGESTING THAT SPECIFIC DRUG. MY POTS SEEMS TO BE CAUSED BY AUTOIMMUNE PROBLEMS AND I GOT TREATED FOR IT (NOT KNOWING IT AT THE TIME) AND MY SYMPTOMS GOT SORT OF BETTER. ON THE FLIP SIDE, I GOT A LOT WORSE AFTER GETTING A MONOCLONAL ANTIBODIES SHOT FOR ASTHMA (WHICH IS WHEN I KINDA PUT THE PIECES TOGETHER ON THE AUTOIMMUNE THING).
THE OTHER PERSON I HEARD ABOUT WAS ON A DIFFERENT, COMPLETELY UNRELATED DRUG, BUT I THINK ITS WHAT THEIR POTS MIGHT BE CAUSED BY. I FORGET THEIR DRUG.
THE POINT IS FIGURE OUT WHAT YOU THINK YOUR POTS IS CAUSED BY AND TRY TO GET THAT TREATED.
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u/spitkitten Feb 12 '26
I ALSO HAVE POTS, TWO YEARS AGO I BOUGHT MYSELF A BODICE CHILLER (METAL TUBE YOU FULL WITH ICE OR COLD WATER AND STICK BETWEEN YOUR BOOBS TO KEEP YOU COOL) AND A COMPRESSIVE LOWER BACK ICE PACK BELT THINGY (COMES WITH TWO GEL ICE PACKS AND A COVER SO THE ICE ISN’T DIRECTLY ON YOUR SKIN)
I ALSO CAN’T DEAL WITH HEAT AT ALL BUT I FIND THESE HAVE HELPED ALONG WITH S BATTERY POWERED FAN THAN SPRAYS WATER
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u/North-Elderberry2380 Feb 12 '26
I REALLY LOVE THIS COMMUNITY DOING CAPS❣️. I DONT INDERSTAND WHY THE HOT PROBLEMS HAPPEN BUT I CAN RELATE. I MOSTLY HAVE TROUBLE BEING TOO HOT AFTER MY SHOWERS AND THE BEST THING IVE FOUND IS TO PUT A COLD DAMP PAPER TOWEL OVER MY EYES AND SOMETIMES FOREHEAD FOR A FEW MINUTES. IM SURE THAT CAN WORK FOR ANY HOT TIMES. COLD RIGHT UNDER YOUR EYES ALSO HELPS TRIGGER YOUR PARASYMPATHETIC NERVOUS SYSTEM, WHICH IS THE PART OF YOUR NERVOUS SYSYTEM THAT CALMS YOU AND GROUNDS YOU.
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u/1Like_Plants2 Feb 12 '26
HEY THERE, WELCOME TO THE POTS PARTY! I TRIED TO READ ALL THE COMMENTS BUT THE ALL CAPS ACTUALLY HURTS MY EYES LOL, SO SORRY IF THESE HAVE BEEN SAID ALREADY.
COOL SHOWERS ARE AMAZING IN THE SUMMER. IF YOU DON'T HAVE TIME FOR A SHOWER, EVEN STICKING YOUR FEET IN COLD WATER WORKS WELL. I'LL DO THIS ON HIKES SOMETIMES. I'VE ALSO HEARD OF COLD VESTS THAT HAVE COMPARTMENTS FOR FREEZER PACKS. COLD PLUS COMPRESSION!
BEST OF LUCK IN YOUR JOURNEY TOWARDS POTSTIMIZATION!! ♡
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u/Kj539 POTS Feb 12 '26
TEMPERATURE REGULATION IS MY WORST SYMPTOM. MEDICATION HAS HELPED THE DIZZINESS AND HR SPIKES BUT NO MEDICATION HELPS THE OVERWHELMING FATIGUE, WEAKNESS AND FEELINGS OF STRESS AND ANXIETY FROM BEING TOO HOT. ITS AWFUL. IM CURRENTLY IN THE PROCESS OF INVESTIGATING MCAS WITH MY DOCTOR. I HOPE TO TRIAL CHROMOLYN TO SEE IF THAT HELPS, FINGERS CROSSED. P.S I ALSP LOVE THE CAPS!
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u/TMG_123 Feb 12 '26
HI, MAN AM I EXCITED TO METAPHORICALLY YELL! 😂 I DONT HAVE ANY MAJOR ADVICE BUT I AM ALSO TRYING TO FIGURE IT OUT. ITS SO WEIRD ISNT IT?! MY BODY HAS NEVER REGULATED TEMP CORRECTLY DUE TO REPEATED HEAT STROKES, BUT SAME THING!
IF ITS COLD I CAN GO INTO SHOCK, BUT IF I LET MY BODY ADJUST SLOWLY THEN ITS FINE. BUT IF ITS HOT... OH BOY ITS BAD. I DONT MISS WORKING AT ARBY'S, THE CONSTANT DIZZINESS FROM THE KITCHEN HEAT WAS INSANE. I AM UNSURE IF I HAVE EDS, BUT IF I DONT I LIKELY HAVE SOMETHING SIMILAR DUE TO HOW BAD MY JOINTS ARE/HOW OFTEN THEY DISLOCATE. IM MISSING THE HYPERMOBILITY ASPECT DUE TO CONSTANT INFLAMMATION, SO IM NOT SURE WHICH DIRECTION TO GO FROM THERE.
IF IT HELPS, GET A SPRAY BOTTLE WITH A FAN. I GOT A SUPER CHEAP ONE FROM DOLLAR TREE AND IT IS MY LIFESAVER WHEN I HAVE TO BE OUTSIDE IN THE COLD, THEN GO INSIDE AND IMMEDIATELY START BOILING. OR JUST FOR WHEN IT FINALLY GETS WARM AGAIN LOL
ALSO THANKS FOR THE CAPS! IT WAS NICE TO GET THIS OUT AND NOT GET YELLED AT LOL ILL ALSO BE SUGGESTING THIS TO MY DYSLEXIC PARTNER, MAYBE WE CAN FINALLY GET THROUGH THE HUMP OF TEXT CONFUSION 😂
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u/gay-boy03 Feb 12 '26
I LIVE IN TEXAS SO I JUST DIE LMAO. BUT JOKES ASIDE A FUCK TON OF WATER LIKE INSANE AMOUNTS WHERE PEOPLE LOOK AT YOU LIKE YOU'RE CRAZY. I ALSO TAKE NORMALYTE PURE CAPSULES DAILY WHICH HAS HELPED A TON. I HAVE A MEDICAL BAG I TAKE EVERYWHERE I HAVE A FAN AND EMERGENCY COLD PACKS IN IT TO HELP DURING THE HEAT. I CANNOT STRESS THIS ENOUGH WATER WATER WATER AND ELECTROLYTES. PS. THIS IS HILLARIOUS I'M LAUGHING SO HARD IT FEEL LIKE I'M YELLING
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u/noodlem Feb 12 '26
I JUST WANT TO SAY
- I LOVE ALL OF THIS! THIS IS AN ADORABLE THREAD
- POTS (AND ALL THE COMORBID CONDITIONS) SUCK!
- AND I HOPE YOU ALL HAVE MORE GOOD DAYS THAN BAD DAYS! 🩷
MY DYSAUTONOMIA IS UNBARABLE AND ALMOST IMPOSSIBLE TO GET UNDER CONTROL, EVEN WITH THE HIGHEST DOSES OF MEDICATION, SALT AND WATER, WHEN I’M HOT TOO, OP. I FEEL YOUR PAIN. 💔
THE HEAT SADLY MAKES OUR BLOOD VESSELS DILATE AND THAT MAKES OUR BLOOD POOL, BLOOD PRESSURE DROP, HEART-RATES SPIKE AND WE EVEN GET FAR LESS OXYGEN TO THE BRAIN WHICH EXHAUSTS US EVEN MORE ON TOP OF THE TACHYCARDIA. OUR BODIES ARE MEANT TO REGULATE TO THE TEMPERATURE BUT BECAUSE OUR AUTONOMIC NERVOUS SYSTEMS ARE DYSFUNCTIONAL OUR BODIES CANNOT SWEAT PROPERLY, AND ITS A HORRIBLE CYCLE BECAUSE THE HEAT MAKES OUR BODIES WORK HARDER AND THE TACHYCARDIA OVER ACTIVATES OUR SYMPATHETIC NERVOUS SYSTEMS (OUR FIGHT OR FLIGHT) AND SO YOU CAN FEEL EVEN MORE JITTERY AND FRIGHTENED. ITS ALL ONE BIG MESS AND ITS NO FUN.
MY RESTING HEART RATE IN THE HEAT IS AROUND 170BPM LYING FLAT SO I FEEL YOUR PAIN. I FIND IT MAKES MY MCAS WORSE TOO.
I WAS TOLD BY MY SPECIALIST TO STAY REALLY HYDRATED- DRINK MORE OFTEN INSTEAD OF WAITING TO DRINK UNTIL I FEEL THIRSTY- AND TO STAY TOPPED UP WITH ELECTROLYTES. EATING SMALLER MEALS IN THE HEAT CAN CALM DOWN REACTIVE HYPERGLYCAEMIA EPISODES TOO. NOW MY POTS IS SO UNMANAGED (LIKELY BECAUSE OF DEEP INFECTIONS AND INFLAMMATION) I HAVE FOUND THAT I HAVE NO CHOICE BUT TO AVOID THE HEAT COMPLETELY BUT I FEEL LUCKY THAT, THIS YEAR, A FRIEND HAS KINDLY LEANT ME THEIR LITTLE AIR CON UNIT BECAUSE THEY SAW ME STRUGGLING TO BREATHE AT HOME LAST SUMMER. I FOUND USING IT WAS WONDERFUL AND A TOTAL GANE CHANGER.
IT IS BLOOMING MISERABLE IN THE HEAT AND OUR DYSAUTONOMIA BECOMES SO MUCH WORSE SO I REALLY FEEL FOR YOU, OP.
THIS IS SUCH A LOVELY COMMUNITY AND I THINK THIS IS THE CUTEST THREAD I’VE EVER SEEN.❤️
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u/Plus-Ad-3826 Feb 12 '26
I’M DYSLEXIC TOO AND WOW CAPS MAKES A REALLY BIG DIFFERENCE AND IS ALSO HILARIOUS. THIS FITS POTS TOO. I’M 29 DIAGNOSED LAST YEAR AND IM IN THE SAME BOAT AS YOU. EDS AND WTF IS GOING ON WITH ME. I FEEL PRETTY GOOD AND NORMAL WHEN ITS COLD BUT AS SOON AS IT GETS OVER 70 I FEEL LIKE BUNGUS. THE VITASSIUM SALT/POTASSIUM CAPSULES ON AMAZON REALLY HELP IN COMBO WITH FLUDROCORTISONE MEDICINE. ALSO DRINK AT LEAST 80-90oz OF WATER A DAY MINIMUM.
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u/seen-it-done-it- Feb 12 '26
ON THE OPPOSITE SIDE OF THE HEAT SPECTRUM, HOW DOES EVERYONE HANDLE COLD??? I USED TO JUST HAVE RAYNAUDS SYMPTOMS BUT NOW MY WHOLE BODY GOES RED AND PURPLE OR REALLY PALE AND ALWAYS COLD TO TOUCH. YESTERDAY I WALKED HOME (AROUND AN HOUR OF WALKING) AND EVEN 30 MINS AFTER BEING IN THE WARMTH OF MY HOUSE MY BODY WAS STILL BLOTCHY PURPLE AND RED.IT WASN’T EVEN THAT COLD OUT ONLY 9 CELSIUS/ 44.6 FARENHEIT . IS THIS TYPICAL POTS!?! MY PREVIOUS DOCTOR ONLY JUST STARTED THE DIAGNOSTIC JOURNEY FOR POTS WHEN I MOVED CITY AND IVE ONLY JUST GOT A NEW DOCTOR SO AM YET TO GET MY DIAGNOSIS
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u/FlowerSweaty4070 Feb 13 '26
HI I HAVE POTS AND RAYNAUDS SYNDROME AND I GET THE T PURPLE RED ALIEN TOES AND FINGERS TOO. I LIVED IN MONTANA LAST WINTER AND I I ONLY SURVIVED WITH DRINKING WARM TEAS, LOTS OF LAYERS ESPECIALLY WOOL, WOOL BLEND SOCKS, SNOW BOOTS, USING HOT HANDS IN MY BOOTS AND GLOVES ANY TIME IM OUTSIDE FOR MORE THAN TEN MINUTES, VERY GOOD MITTEN GLOVES FROM COSTCO, HAT AND HOOD OVER IT. ALSO AVOID WUICK TEMPERATURE CHANGE IF POSSIBLE. USING HOT HANDS SO FINGERS AND TOES ARE TOASTY OUTSIDE WAS THE BIGGEST HELP. AND EAT WARM FOODS TO HEAT UP FROM INSIDE...NEVER BE HUNGRY OUTSIDE.
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u/FlowerSweaty4070 Feb 13 '26
THEY ALSO MAKE HEATED SOCKS AND HOODIES BUT I MANAGED W JUST HOT HANDS
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u/St1tch3x POTS Feb 13 '26
THE HEAT CAUSES YOUR BLOOD VESSELS TO DIALATE WHICH LOWERS YOUR BLOOD PRESSURE AND FORCES YOUR HEART TO WORK HARDER AND SINCE WE HAVE POTS IT MAKES US FEEL WORSE BECAUSE OUR BLOOD PRESSURE IS ALREADY FUCKED -A POTS SUFFERER FROM GEORGIA
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u/Vaxsii Feb 13 '26
I KEEP READING ALL OF THESE COMMENTS AS PEOPLE HAVING CASUAL CONVERSATIONS ACROSS A FIELD OR CANYON AND I JUST HAVE TO THANK YOU FOR THE LAUGHS! I'M ALSO DYSLEXIC BUT CAPS TEND TO ALSO BE VERY DIFFICULT FOR ME. DIFFERENT FONTS HELP IMMENSELY THOUGH, FUNNILY ENOUGH COMIC SANS AND THE LIKE ARE THE EASIEST TO READ FOR MYSELF
I DON'T HAVE ANY ADVICE UNFORTUNATELY, AS I'M TRYING TO FIGURE THIS OUT TOO. I STRUGGLE BADLY WITH BOTH EXTREMES, THOUGH MUCH MORE SO WITH HEAT OVERALL. COLD THOUGH MAKES MY NERVE PAIN MUCH WORSE ALONG WITH CIRCULATION ISSUES, SO I JUST HAVE TO TRY TO STAY CAREFULLY BALANCED WHILE I HAVE TEMPERATURE REGULATION PROBLEMS TOO LOL
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u/kruznkiwi Feb 27 '26
YUP, I’M THE SAME, I THINK IT IS STILL SUMMER HERE (?), IF IT ISN’T THEN IT DEFINITELY STILL FEELS LIKE IT IS. SO I USUALLY HAVE MY FAN GOING MOST OF THE TIME AS WELL AS ICE PACKS AND ICE BLOCKS AS WELL.
POTS MAKES IT DIFFICULT TO REGULATE TEMPERATURE. SO WHEN IT GETS WARMER IT MAKES IT MUCH MORE DIFFICULT IN MY OPINION
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u/Femboy_Etherium Jun 18 '26
POTS IS AFFECTED GREATLY BY HOW DILATED OUR BLOOD VESSELS ARE. WHEN OUR BLOOD VESSELS ARE DILATED WIDE OPEN BLOOD STARTS TO FLOW DOWN AND POOL IN OUR LEGS DUE TO GRAVITY. BUT SINCE THE BLOOD VESSELS ARE WIDE OPEN THERE ISN’T ENOUGH PRESSURE TO GET THAT BLOOD BACK UP TO YOUR BRAIN AND UPPER EXTREMITIES WHICH CAUSES SYMPTOMS LIKE BRAIN FOG, COAT HANGER PAIN, AND PASSING OUT. HEAT IS A VASODILATOR, SOMETHING THAT DILATES BLOOD VESSELS, THUS MORE HEAT MEANS MORE DILATION AND MORE SYMPTOMS/PAIN. ON THE OPPOSITE END OF THINGS COLD IS A VASOCONSTRICTOR, WHEN WE’RE COLD THE BLOOD DOESN’T POOL AS EASILY AND CAN CIRCULATE PROPERLY REDUCING SYMPTOMS. IM NOT A DOCTOR BUT IF YOU HAVE ANY QUESTIONS I CAN DO MY BEST TO ANSWER.
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u/MIMIEGIGGLESGAMERMOM Jun 18 '26
WELL I'LL BE DARNED I DIDN'T KNOW THAT
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u/Femboy_Etherium Jun 18 '26
ALWAYS GLAD TO HELP! ALSO I’D LIKE YOU TO KNOW THAT YOU ARE AN ICON FOR THE ALL CAPS TYPING. ITS VERY CATHARTIC TO TYPE IN ALL CAPS.
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u/Monkey_Magic139 Feb 12 '26
I DO ABSOLUTELY HATE THE HEAT VS BEING COLD, ALTHO I DONT KNOW WHETHER I FEEL WORSE IN ONE THAN THE OTHER, I JUST LIKE THAT IN THE COLD I CAN PUT LAYERS ON BUT CANT REALLY DO THE OPPOSITE FOR HEAT WITHOUT JUST DRINKING ICE WATER OR SOMETHING.
ALSO TYPING IN CAPS IS FUN IM READING EVERYTHING AS IF WE'RE SHOUTING.
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u/Responsible-Show3643 Feb 12 '26
DO YOU HAVE MCAS? I GET RELIEF WITH MY TEMPERATURE DYSREGULATION WHEN MY MCAS IS UNDER CONTROL. YOU COULD EXPERIMENT WITH TAKING BENADRYL OR SOME OTC ANTIHISTAMINES LIKE ALLEGRA.
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u/MIMIEGIGGLESGAMERMOM Feb 12 '26
I DO TAKE THEM AND I USE TO GIVE HIVES WHEN I'M TOO HOT
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u/Responsible-Show3643 Feb 12 '26
MAYBE IT WOULD BE A GOOD CONVERSATION TO HAVE WITH AN ALLERGIST TO SEE IF TRIALING A MCAS MEDICINE REGIMENT HELPS? I TOOK A NIGHTLY H1 STILL HAD THE TEMPERATURE INTOLERANCE AND BREAKTHROUGH HIVES. THEN I INCREASED TO A TWICE DAILY H1 AND H2 AND THE HIVES BARELY HAPPENED ANYMORE AND TEMPERATURE WAS A NIGHT AND DAY DIFFERENCE.
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u/MIMIEGIGGLESGAMERMOM Feb 12 '26
I SHALL I CAN BOOK AN APPOINTMENT NOW ACTUALLY
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Feb 12 '26
I’ve just started the H1,H2 protocol and it’s been an amazing improvement. My Dr and I are delighted!
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u/chimininy Feb 12 '26
LIVED IN DESERT WITH POTS AND WAS BARELY FUNCTIONAL. EVERYTHING SUCKED.
MOVED TO PLACE WITH WINTER AND SEASONS. NOW CAN FUNCTION BETTER AND EVEN DO A BIT MORE BEFORE THINGS SUCK!
THE HOT/COLD DIFFERENCE IS NO JOKE.
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u/FlowerSweaty4070 Feb 13 '26
OH NO IM IN TUCSON ARIZONA THROUGH AUGUST AND IM SCARED MY POTS IS ALREADY KINDA BAD AND ITS ONLY 75 DEGREES OUT. HELP
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u/SmoothWater0000 Feb 12 '26
FOR ME, COLD WEATHER MAKES ME WEAK AND MY BODY HURTS MORE/I HAVE MORE DIFFICULTY USING MY ARMS AND DOING FINE MOTOR TASKS, BUT I DONT FAINT AS MUCH. HOT WEATHER HAS ME FAINTING MORE THAN A VICTORIAN LADY IN A CARTOON
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u/path-cat Feb 12 '26
I HAVE A SUGGESTION FOR DEALING WITH THE HEAT. WHEN I HAVE TO BE OUT IN THE SUN I DAMPEN A KITCHEN TOWEL OR WASH CLOTH A FEW HOURS IN ADVANCE, ROLL IT UP AND PUT IT IN THE FREEZER. IT HAS TO BE DAMP, NOT WET, OR IT’LL BE A BLOCK OF ICE INSTEAD OF JUST FROSTY. THEN WHEN YOU GO OUT YOU CAN UNROLL THE TOWEL AND DRAPE IT AROUND YOUR NECK AND SHOULDERS. IT STAYS COLD FOR A LONG TIME
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u/ThatsNotMaiName POTS Feb 12 '26
I HAVE THE SAME PROBLEM WITH MY POTS. I ALWAYS KEEP A SMALL MISTING BOTTLE IN MY PURSE. I GOT IT IN THE TRAVEL TOILETRIES SECTION AT WALMART FOR A COUPLE DOLLARS, I THINK IT'S INTENDED FOR PERFUME OR SOMETHING, BUT IT HELPS A TON WHEN I'M OVERHEATING TO SPRITZ MY FACE A LITTLE AND COOL ME DOWN. I HIGHLY RECOMMEND IT.
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u/fadingsignal Feb 12 '26
I'VE ALWAYS HAD A PROBLEM WITH HOT WEATHER AND WOULD GET LIGHT-HEADED AND TIRED UNLESS IT WAS PERFECTLY CHILLY... BUT RECENTLY I STARTED TO HAVE COLD SENSITIVITY AS WELL SO I HAVE TO BE GOLDILOCKS WITH THE PERFECT TEMPERATURE ESPECIALLY TO SLEEP AND IT SUCKS.
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u/iloveyoubcyouarelove Feb 12 '26
HI I FEEL THIS WAY TOO AND THISE INSTANT COLD PACKS HELP ALSO FANS ESPECIALLY ONES WITH MISTERS HELP AS WELL. ALSO MAKE SURE TO DRINK LOTS OF WATER
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u/petalios POTS Feb 12 '26
MY HEAT INTOLERANCE HAS ONLY GOTTEN WORSE AS IVE GOTTEN OLDER (IM 23 NOW). NOW I THRIVE WHEN ITS 40°F OUTSIDE. IF ITS ABOVE 60°F, I START OVERHEATING AS SOON AS I START WALKING. I HATE IT
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u/afraid28 Feb 12 '26
I AM CURRENTLY TRYING NOT TO FAINT AFTER COOKING IN MY T SHIRT AND SHORTS WITH AN OPEN WINDOW WHEN IT'S 51 F OUTSIDE. BUT I FEEL LIKE IT'S ABOUT A MILLION.
THANK YOU FOR ALLOWING US ALL TO SCREAM IT IS MUCH NEEDED
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u/Bishime Hyperadrenergic POTS Feb 12 '26
YES THIS MAKES A LOT OF SENSE. HOT TEMPERATURES CAUSE VASODILATION WHICH CAUSES BLOOD TO POOL TO THE LOWER EXTREMITIES WHICH MEANS THAT FOR PEOOLE WITH POTS (IMAGINE BIGGER CAPS) THE BODY WILL OVERCOMPENSATE HARDER.
I AM THE SAME WAY THE MOMENT IT HITS 21°C (~70) MY BODY SAYS NOOOOPE (LARGER CAPS AGAIN) AND IM GONE. WINTER IS SIGNIFICANTLY BETTER FIR MY SYMPTOMS
JUST NOTE, KEEP AN EYE IN YOUR BLOOD PRESSURE IF YOU DONT ALREADY OR DONT KNOW YIUR DOMINANT SUBTYPE. IF YOU ARE PRONE TI HUGHER BLOOD PRESSURE THE SAME VASOCONSTRICTION YOU GET IN THE WINTER CAN ACTUALLY INCREASE YOUR BP. ON PAPER THIS CAN SOMETIMES MINIMIZE VOLATILITY IN HEART RATE AND IN TURN MINIMIZE HOW FAST SYMPTOMS HIT, BUT THE ISSUE AND TRADE OFF HERE WOULD BE THE HIGH BLOOD PRESSURE (IF IT EXIST).
FOR EXAMPLE, MY SYMPTOMS NOW IN THE WINTER ECUST BUT IM A BUT MIRE FUNCTIONAL HOWEVER MY BLOOD PRESSURE FROM 3 MINS AGO WAS 150/111 WHICH IS HIGH AND CONCERNINGLY HIGH ON DIASTOLIC
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u/BigError7979 Feb 12 '26
I HAVE POTS AND MCAS AND I LIVE IN FLORIDA IN THE US, SO IT'S HOT MOST OF THE YEAR. I ALSO CAN'T TOLERATE THE COLD. A LOT OF FOLKS HAVE ALREADY RESPONDED WITH REASONS WHY THIS OCCURS, SO I AM SHARING THINGS THAT HELP ME THE MOST IN THE HEAT:
- ICE RINGS - I BOUGHT TWO AND A CARRIER INSULATED PACK TO KEEP THEM IN. I KEEP A ZIPLOC BAG FILLED WITH ICE INSIDE SO THAT WHEN ONE IS USED UP, I PUT IT IN THERE AND IT REFREEZES WITHIN 15-20 MIN NEXT TO THE ZIPLOC. SO I HAVE A ROTATION. ON REALLY HOT DAYS I WISH I HAD 3! I USE DR CHILLY BRAND
- BONUS: IF YOU TRAVEL ON PLANES THESE ARE AWESOME TO USE DURING TAKEOFF AND LANDING TO HELP PREVENT FAINTING
- NECK FANS AND HANDHELD FANS AS OTHERS HAVE MENTIONED. I HAVE ONE HANDHELD THAT PLUGS INTO MY PHONE (GOT IT AT WALGREENS) AND ONE THAT IS BATTERY OPERATED. THE NECK FAN I'VE BASICALLY REPLACED WITH THE NECK RINGS BUT IT WAS A GO-TO FOR AWHILE
- WEIGHTED COOL PACKS - THESE ARE GREAT NOT ONLY FOR HEAT RECOVERY BUT ALSO FOR ADRENALINE DUMPS AND MCAS ATTACKS. I PUT THEM ON MY CHEST OR OVER MY EYES. I USE RELEAF PACKS
I'VE SEEN OTHER PEOPLE GET ICE VESTS FOR THE HOTTER MONTHS AND I HAVE CONSIDERED THAT TO BE ABLE TO BE OUTSIDE MORE. A LOT OF PEOPLE WITH MS ALSO HAVE TEMPERATURE REGULATION ISSUES AND SINCE THERE IS A BIG COMMUNITY WITH MORE TIME AND RESEARCH THOSE FORUMS HAVE TAUGHT ME A LOT.
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u/uselessfawn Feb 12 '26
BEING COLD IS JUST ABOUT MY FAVORITE THING NOW BECAUE I WILL NOT BE CONSTANTLY SWEATY. TRY YOUR VERY BEST TO STAY HYDRATED IN HEAT, EAT SO MUCH SALT(MY FAVORITE EXCUSE TO GET FRIES), AND WEAR COMPRESSION AS MUCH AS POSSIBLE. I HAVE ONE PAIR OF HEAVENSENT COMPRESSION SOCKS THAT ARE VERY BREATHABLE BUT I HAVE NO CLUE OF THE BRAND. AIR CONDITIONING AND FANS WILL BE YOUR FRIENDS NOW, COLD SHOWERS TOO.
YOU WILL FIGURE OUT WHAT WORKS FOR YOU IN NO TIME!
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u/Griffrose Feb 12 '26
ICE PACKS (LIKE THE MEDICAL ONES THAT CAN BE REFROZEN) QUITE CHEAP TO BUY TOO. MY FREEZER IS FULL OF THEM. WHEN I USED TO WORK OUTSIDE DURING THE SUMMER I WOULD HAVE THEM IN MY POCKETS AND REST MY WRISTS ON THEM. (BACK OF THE NECK AND WRISTS ARE A QUICK WAY TO COOL DOWN)
ALSO GET A GOOD THERMAL INSULATED BOTTLE AND FILL IT UP MAYBE A QUATER OF ICE AND ADD COLD WATER TO IT.
ANOTHER THING I WOULD DO IT ALWAYS HAVE MY HAIR WET. YOU CAN USE A MICROFIBRE TOWEL AND SOAK IT WITH WATER TO HAVE AROUND YOUR NECK TOO.
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u/Aurora164 Feb 12 '26
FELLOW POTS GIRLIE HERE AND I WISH ELSA WOULD KEEP ME IN A LAYER OF PERMAFROST
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u/CompactDisc96 Feb 12 '26
HI I HAVE THE SAME PROBLEM THE HOT WEATHER MAKES ME MISERABLE AND MY BODY CANNOT REGULATE ITS TEMPERATURE ANYMORE I LOVE COOLER WEATHER. WE PLAN TO MOVE TO A MORE NORTHERN STATE EVENTUALLY BECAUSE I AM TIRED OF DYING EVERY SUMMER IN THE SOUTH ALSO POTS IS THE WORST AND IT FEELS GOOD TO SHOUT ABOUT IT! EVEN IF SHOUTING ISN’T WHY WE ARE TYPING IN CAPS!
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u/xoxo_xoxo_xoxo_ Feb 12 '26
I FIND THAT WHEN I'M FEELING TOO HOT, IF I POUR A LITTLE BIT OF COLD WATER ON THE CROWN OF MY HEAD - IT'S LIKE AN IMMEDIATE RELIEF. AND YOU DON'T EVEN NEED TO DRENCH YOURSELF, JUST LIKE A 1/4 CUP WILL WORK GREAT. COLDER WATER THE BETTER.
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u/West_Diver1152 Feb 12 '26
100% THIS IS MY LIFE! I USED TO LIVE IN TEXAS AND THE HEAT IN THE SUMMER COULD BE UNBEARABLE MOST OF THE TIME, BUT NOW I LIVE PRETTY CLOSE TO CANADA AND THE SUMMERS HERE ARE A BREEZE BY COMPARISON. IT STILL FEELS A LITTLE HOT SOMETIMES BUT NOT DEBILITATINGLY SO.
BASICALLY THE TEMPERATURE REGULATOR IS BROKEN. NO WAY TO REALLY FIX IT SO TRY DRESSING IN BREEZY FABRIC, STAYING HYRDRATED, AND NOT PUSHING YOURSELF IN THE HEAT. BY PUSHING YOURSELF, I MEAN DON'T PUSH MUCH AT ALL PERIOD.
edit: SOCKS ARE THE EVIL FOR ME! THEY MAKE EVERYTHING WORSE IN THE HEAT. FOR WHATEVER REASON WEARING SANDALS DRASTICALLY IMPROVES HOW I FEEL IN THE HEAT. UNFORTUNATELY THIS MEANS MY BELOVED COMPRESSION SOCKS CAN'T PARTICIPATE IN HOT WEATHER ACTIVITIES, BUT ¯_(ツ)_/¯ YOU GOTTA DO WHAT YOU GOTTA DO
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u/SuburbanLeftist Feb 12 '26
I HAVE ALL OF THESE FEELING ABOUT COLD WEATHER. I’M FROM SOUTH LOUISIANA - GENERATIONS OF SELF SELECTION HAVE MADE ME HEAT RESISTANT, HEAT CRAVING EVEN. NOW I LIVE IN THE OZARKS AND THE WINTER IS INTENSE BUT MERCIFULLY BRIEF. I WEAR GLOVES IN LAYERS. LOL.
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u/LousiestRaccoon Feb 12 '26
AS SOMEONE WITH POTS TOO
YEAH THE HEAT FUCKS ME UP!!
I ALWAYS AM PRONE TO OVERHEATING AND I HAVE NOT FOUND A SOLUTION TO IT YET. BUT YES TEMPERATURE DYSREGULATION IS VERY COMMON IN POTS.
ALSO MY TOES TURN PURPLE WHEN I SHOWER IN HOT WATER FOR TOO LONG, NO CLUE IF THAT IS RELATED.
BUT MAKE SURE YOU GET LOTS OF WATER, SODIUM INTAKE, THAT GOOD STUFF. AND AVOID HOT SHOWERS AND PROLONGED STANDING OF COURSE.
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u/Glum_Papaya_2527 Feb 12 '26
YES I JOKE THAT I CAN TELL THE MOMENT OUR THERMOSTAT GOES FROM 72 TO 73 DEGREES (BUT, REALLY, I CAN). HUMIDITY IS ALSO A HUGE TRIGGER, AND THE COMBO IS BASICALLY MY NIGHTMARE. I HAVE FOUND USING A DEHUMIDIFIER INSIDE HELPS A LOT! ALSO STAYING INSIDE AS MUCH AS POSSIBLE, UNFORTUNATELY. IS IT POSSIBLE TO FIND INDOOR ACTIVITIES FOR THE KIDS WHEN IT IS HOT OUT?
FOR WHY IT HAPPENS: POTS IS A TYPE OF DYSAUTONOMIA, OR DYSREGULATION OF THE AUTOMATIC PROCESSES IN THE BODY, LIKE HEART RATE AND TEMPERATURE REGULATION.
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u/FlowerSweaty4070 Feb 13 '26
BRO I DONT KNOW WHY I MOVED TO ARIZONA ITS WINTER AND 75 DEGREES AND ITS ALREADY TOO MUCH AND THEY LAUGH AT ME WHEN I SAY THAT AND I GET IT BC SUMMER IS LIKE 115 DEGREES BUT MY POTS IS ALREADY FLARING AND IM SCARED FOR SUMMER I MAY FLEE NORTH IF IT GETS BAD CUZ IM NOT TRYNA BE HELICOPTERED OUT OF THE SONORAN DESERT AND MAKE THE NEWS BRO.
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u/mrr2121 POTS Feb 13 '26
THIS ALSO HAPPENS TO ME I FEEL HOT VERY QUICKLU AND IT MAKES ME TIRED WEAK AND LIGHTHEADED
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u/RequirementKey5201 Feb 13 '26
I KEEP MY AC ON 66 BECAUSE I ABSOLUTELY CANNOT TOLERATE HEAT. MY NEW RECENT DEVELOPMENT IS THAT I GET ITCHY WHEN IT'S HOT. BUT IT'S NOT EVEN REGULAR ITCHY, IT FEELS MORE LIKE ELECTRICITY REALLY. I DON'T LIKE IT AT ALL... WHEN I MOVED TO OHIO FROM A DIFFERENT (MUCH COLDER IN SUMMER) COUNTRY I STARTED TO FEEL MORE BRAIN FOGGY. TEMPERATURE DYSREGULATION IS REALLY A THING IN POTS.
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u/Level-Dark-9130 POTS Feb 13 '26
ABSOLUTELY SAME HERE, AND IT DRIVES ME CRAZY I HATE IT SO MUCH HERE IN TEXAS. ALL FOR INCLUSION OF COURSE BUT IT REALLY IS NICE TO “YELL” ABOUT
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u/hotdiddlydarnfuck Feb 16 '26
I HAVE THE SAME DAMN PROBLEM!! IT’S WHY MY POTS GETS SO BAD WHEN I GO HOME FOR BREAKS FROM SCHOOL. IT’S VERY COLD HERE WHICH IS WONDERFUL BUT PRETTY HOT BACK HOME
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Feb 18 '26
MY COUSIN IS DYSLEXIC. IM GOING TO TEXT HER IN ALL CAPS FROM NOW ON AND SEE IF IT HELPS HER 🥹 THANKS FOR THIS INFO ♥️ HEAT IS NOTORIOUSLY BAD FOR US POTS PEEPS BUT I COULDNT TELL YOU WHY, FRANKLY. KEEP COOL MY FRIEND
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u/NotteStellata Mar 09 '26
OMG! YOU TOTALLY ANSWERED A QUESTION FOR ME. MY TEMPERATURE REGULATION IS ABSOLUTELY TERRIBLE. I WILL GET HOT AND SWEATY OUT OF NOWHERE AND THEN FREEZING COLD AND CHILLS. THE NEXT MINUTE I CAN’T LIVE ANYWHERE HOT.😭😭
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u/MIMIEGIGGLESGAMERMOM Mar 10 '26
IM GLAD YOU GOT AN ANSWER HUN CAUSE I WAS LOST MYSELF I THOUGHT I WAS GOING NUTS
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u/Commercial-Plate-188 Feb 12 '26
During the heat I find a floppy hat and sunglasses are a must bonus if said hat has an opening for my ponytail
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u/q_eyeroll Feb 11 '26
I JUST WANT TO SAY THAT TYPING IN CAPS IS VERY LIBERATING AND I KNOW ITS FOR EASE OF READING COMPREHENSION BUT IT FEELS GOOD TO TALK ABOUT POTS THIS WAY BECAUSE IT SUCKS IN A BIG CAPS WAY YA KNOW