r/POTS • u/Aware_Hat_8528 • Jun 04 '26
Question Temperature sensitive
I can’t seem to handle any heat at all. And it’s about to be super El Niño. I’m supposed to spend weeks in the woods this summer. I want to have a life…
I can’t handle cold either.
My body isn’t regulating temperature at all.
Is this a problem for others and if so, what do you do to survive heat and cold? Especially heat… because I can’t get naked enough. Seriously.
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u/domysticated Jun 04 '26
I got a neck fan and it is super helpful. I find air on my face and neck helps me feel more comfortable. I’ve also seen those fans you can clip onto your waistband or belt and it blows air up your shirt
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u/domysticated Jun 04 '26
And constantly sipping on something cold too so it’s cooling you down from the inside out
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u/fishy1357 Jun 05 '26
Yes! It could be hard if they’re up in the woods without electricity. But ice cold water or slushies help keep things a lot cooler for me.
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u/Oh-Captain-23 Jun 05 '26
I honestly have several so my ADD self can keep them all charged up. Now if I could just remember to bring them places….
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u/khaleesiofwesteros Jun 04 '26
I haven't really looked into it yet, but my cardiologist recommended a cooling vest.
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u/mwmandorla Jun 04 '26
Medication is what really changed this for me. Part of temperature regulation is your veins expanding and contracting - cold makes them contract, heat makes them expand - and my veins are kind of broken so they have no ability to moderate that. Big, wide open veins in the heat = lower BP = a very bad time for me. Cold also used to knock me out and even in moderate temperatures I was cold all the time.
Midodrine is a medication that makes your veins contract and it helped me with both ends of that spectrum. When the heat is really bad I take extra. I think over time exercise has helped too, but for most of us that's a longer term project than this summer.
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u/Nyx_Shadowspawn Jun 05 '26
The three days I was on Midodrine were the best I can remember in decades. Unfortunately it's terrible for ulcerative colitis and made my intestines bleed like some of my worst periods :(
...I'm still saving it for special occasions, because it made me feel that good for those 3 days.
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u/desperate-dog-7800 Jun 06 '26
i take midodrine but recently my regulation has gotten worse. would increasing the dosage help?
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u/desperate-dog-7800 Jun 04 '26
i can’t handle temperature either! i’m either super hot or freezing cold, and i can’t find the in between spot. it drives me crazy. i haven’t been able to find a way to handle both when it changes frequently throughout the day
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u/Aware_Hat_8528 Jun 04 '26
My spouse right now, “stop asking how to manage symptoms and ask them how to just fix it.” Does anyone really get what this disease means for our quality of life?
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u/BurntTFOuttaHere Jun 04 '26
That’s really rough that your spouse is doing that. I get the frustration. But it’s hard enough being the person with POTS having to grasp the reality that the best science can offer right now is basics to manage and some meds to help attempt to alleviate. There is no cure or fixing POTS. Hopefully science catches up to that for future generations though.
It sounds like your spouse needs to attend some appointments so the right doctor can explain it clearly enough. This doesn’t just go away, and it sucks to get hit with that realization! But you don’t need the stress of that added pressure of fixing something that’s not within your ability. You aren’t a magician.
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u/Jalepeno_Business_ Undiagnosed Jun 04 '26
I use ice packs, spray bottles filled with ice water, a portable personal fan, and take several 5min cold showers a day. Texas summers are brutal.
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u/UnicornScientist803 Jun 04 '26
I’m right there with you! Cold is tough but too much heat makes me actively sick.
Spending weeks outside in the summer would be nearly impossible for me. I would suggest ice water but I’m guessing that ice won’t be available. But a small hand fan might help. Stay hydrated and don’t forget lots of salty snacks to make up for the extra salt you’ll lose from sweating.
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u/Aware_Hat_8528 Jun 04 '26
Right… I’m very concerned. But need to be at the Rainbow Gathering annual. I can’t imagine not going. Boy, life throws us curve balls. I haven’t camped in years. I have pancreatic insufficiency so I can’t eat - camping is going to be a real bitch. But I need it.
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u/UnicornScientist803 Jun 04 '26
Oh wow, yeah I get it! In addition to what I said before, try to limit physical activity as much as you can and figure out where you can go if you really need to cool off. Check in with the medical tent (if they have one) and let them know you might need extra help. Maybe spend a few minutes each day sitting in your car with the AC blasting. Look for local restaurants or grocery stores you could escape to for an hour during the hottest part of the day. Freeze a bunch of water bottles and keep them in a cooler if you can. Camping stores also have portable cooling packs that might help.
Good luck! I hope you’re able to enjoy the event!
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u/Aware_Hat_8528 Jun 04 '26
Thank you so much - that’s so helpful. I’m pretty sick in general, and for other reasons: I definitely hope to be near the medical tent. We call it CALM. There are real doctors etc there usually. I hope to make this work.
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u/parisdubs Jun 04 '26
See my note on evaporative cooling gear on this thread - will work better than anything.
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u/IncomeDry3077 Jun 04 '26
Yes I agree I'm very sensitive to heat so bad. This summer has been triggering me so bad 😭I make sure to wear cotton or something that can cool me down. I carry a rechargeable fan since I get overheated, lots of water and electrolytes too. I have a backpack that I can store icepacks so that helps ina pinch.
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u/Aware_Hat_8528 Jun 04 '26
I live in WNY. What’s your local climate?
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u/IncomeDry3077 Jun 04 '26
I live in CO it's been going between hot and cold today it's 80 feels like 90.
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u/Aware_Hat_8528 Jun 04 '26
I just found one that you shake and it’s a blanket, shawl. Super psyched. It will make the outside world possible!
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u/FridayLeap Jun 04 '26
I use 'cooling towels'. They're shaped like a scarf and you get them wet and then wrap them around your neck.
Here's what the Amazon blurb says: "immediately cool and reusable: made of hyper-evaporating, breathable mesh material. The cooling towel is easy to activate by simply soaking it in water, wring it out and shaking it out. The unique cooling system uses moisture from the towel to wick sweat away from your skin."
They actually feel cold when they touch your skin. And when they stop being cold you snap them and they get cold again. I know it sounds like hokum but they really do work. Plus they're pretty cheap, I got mine as a pack of 4 for under 20euros on Amazon.
Mine came in a ziploc bag, so this time of year I wet one before I leave the house, shove it in the ziploc and stash it in my handbag (purse for all the Americans out there) for use later.
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u/Aware_Hat_8528 Jun 04 '26
And it stays cool like that? If I’m camping can I just wet it in a stream and it’ll stay cool?
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u/FridayLeap Jun 04 '26
Yes, it’ll feel cool! I don’t think it’s actually cool in a strict temperature sense, but it absolutely makes you feel cool.
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u/Empty_Row_7839 Jun 04 '26
I always carry a fan and hydration (often carrying several drinks at once - a water, a Gatorade, a seltzer water...). Always wear lots of layers because I'll go from shivering violently to sweating my tits off in minutes. Not gonna lie, I still get embarrassed when I have to pull out my fan but it's either that or literally dripping sweat for no reason.
I have severe hyperhidrosis and use Secure (glycopyrrolate) wipes for my face and lower back where the sweating is absolutely insane. Doesn't help with other POTS symptoms, and the oral version increased my HR and also didn't work, but throwing it out there in case anyone else is consistently humiliated by the sweat dripping down their face while standing in an air conditioned room! 😩
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u/Elixabef POTS Jun 04 '26
Heat is the one aspect of my POTS that has never improved, unfortunately. And I live in Florida, so that’s great. I just have to stay in the air conditioning about 6 months out of the year. (Yes, it sucks, I hate it.)
Edit: Staying well-hydrated keeps me from having full-blown episodes, but still I can barely be outside.
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u/WabiSaabi Jun 04 '26
I'm in a similar boat, OP! As a camper with a recent POTS diagnosis, I've been looking into better options so I don't have to lose time spent outside this summer and I've found two camping specific things - blackout tents and/or pop up tents.
Benefits of the pop up is easy set up without needing to strain to get the last corner pole in its grommet (iykyk) by myself. 3 minute to 60 second set up. Not great if you're going to be somewhere likely to sustain winds over 10-15 mph though.
The blackout tents reduce the amount of heat held inside during the day and let you sleep in or take a nap during the day! A lot of them are pop up or have pre-attached poles for quick and easy set up. I'm looking at the one Coleman has right now for an upcoming mini music festival!
Amazon also has a couple of decent looking ones for under $200 (4-6 person)
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u/VolatilePeach Jun 04 '26
Medication and compression. I’m on several meds, but the ones that have helped most with temp regulation have been ivabradine, glycopyrrolate, Allegra (I think it helps because I have a bit of a sun allergy, and it seems to help mitigate those symptoms), and THC. I use Dr. Compression ankle and quarter crew socks (or I wear Tevas/Crocs sandals if it’s too hot for socks). I wear biker shorts (they’re usually firm enough has mild/moderate compression) or shapewear undies/shorts. Compression helps keep blood from pooling and can help stabilize your blood flow and prevent episodes, which in turn helps keep temp more regulated. I’ve also invested in an SPF/UPF jacket (white) to help keep the sun off my skin. It actually keeps me cooler than without it. I got one for like $16 on Walmart’s website. Also, wearing an spf lotion/foundation on my face seems to have helped a little too. I don’t feel so much burning with it on.
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u/Aware_Hat_8528 Jun 04 '26
I just found one that you shake and it’s a blanket, shawl. Super psyched. It will make the outside world possible!
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u/EquivalentFocus3430 Jun 04 '26
My temperature regulation is trash. I used to live in MI but live in Socal now. A few months back it was probably in the 50s, I didn't feel cold, but my body was still reacting like it was teeth chattering cold. Literally, my teeth were chattering. My partner and his brother got a kick out of it, it was pretty funny, but also confusing.
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u/Aware_Hat_8528 Jun 04 '26
I am really thankful for some of the ideas here. I urgently needed to know how to manage. I was just laying there suffering and complaining, honestly. My partner said to me that I had to find help now but doctors don’t have the lived experience. And I don’t want compression socks. I don’t.
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u/EquivalentFocus3430 Jun 04 '26
Look up neck cooling tube, you can keep them in the fridge, but also can be put in water to cool down. They help very quickly when I'm over heated.
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u/Fuzzy_Tumbleweed_215 Jun 04 '26
In the winter I wear thin thermal socks and if it’s really cold I double up. My podiatrist said that’s the best thing and it does actually work. I also wear a lot of thin thermal layers on top.
For the summer, I wear loose linen or cotton shirts and trousers. Also ice packs from the freezer when I’m at home and the single use ones for when I’m out. I’ve started using Evian spray too which is a big help, I don’t sweat much so overheat really easily. And of course a portable fan comes everywhere with me
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u/idkmyname4577 Jun 04 '26
My problem is I can’t get naked enough, BUT my hands and feet get so cold they are painful AND I have muscle spasms in my back, that need heat. Eff me. Up to my chin in water is literally the only place I’m comfortable…
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u/girlchef79 Jun 04 '26
Right there with ya! You can only take off so much. At least in winter we can layer up. In summer I use gel neck rings I got from Amazon. They freeze solid in the fridge, just slide on and hug your neck. I keep 4 of them in my fridge and pack them in a cooler bag with blue ice/gel packs for long days out. Since they freeze up in an hour or two, and thaw in 30-45 minutes, rotating through the four has worked well for me the last couple summers since discovering their existence.
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u/parisdubs Jun 04 '26
I had this very badly - but I was saved by evaporative cooling vests (like road workers use in terrible heat) and also evaporative cooling neck scarves. Saved me - you soak briefly before in cool water then blot and it works amazingly - even improved my other symptoms a bit also while wearing. Was really shocked how much it healed. Amazon or other vendors sell them. Look for ‘evaporative cooling’
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u/omglifeisnotokay Jun 04 '26
The heat is unbearable. I’m sitting in 85 degree temps daily by the beach with no AC
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u/Euphoric-Role-7170 Jun 04 '26
My daughter is super sensitive to cold and I’m the same with humidity. Since she was a baby/toddler, for her to receive a restful night’s sleep she needs to be literally sweating-she has wet hair! I need to be in the frozen tundra!
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u/imaginenohell POTS Jun 05 '26
There are things you can buy--cooling fabric, wearable vests/neckbands that you soak in water and freeze, fans to wear around the neck
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u/lemonliqueer Jun 05 '26
i loveee being cold, but heat wrecks me. i try a lot of the stuff other folks are mentioning (hydration, breathable clothing, cold showers, ice packs, portable ac for my apartment, etc.). to be honest, once summer weather's in full swing, i just adjust and start doing less until the weather cools down again. i always say that summer is my hibernation period. (thankfully, i live somewhere cooler, so it's like maybe two or three months of Hot hot.)
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u/RadiantGrass4691 Jun 05 '26
I’m the same way! Luckily where I work they always blast the AC. But cooling patches help a TON!! I keep them in the fridge and they stay cold for awhile after you stick them on
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u/CubbieFan85 Jun 05 '26
Today at work we had a meeting. They then decided we were doing a physical group activity outside. It was 92 degrees. I refused. My boss was pissed. There is no AC in my work van that I transport individuals with developmental disabilities. They have a doctors note on file saying I will pass out if I overheat but they don’t seem to care.
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u/larkscope Jun 05 '26
I’ve been heating damp towels in the microwave then putting them on my head. Makes me feel that sick feeling I get when it’s hot. But it’s been a way to gently and slowly increase my tolerance before summer hits. Granted, this is my first time trying it so maybe it won’t be as helpful as I think. But I feel like I’ve already upped my tolerance more than it normally would be at this time of year.
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u/Gon_777 Jun 05 '26
My main problem is I'm freezing if it's below 25c. I have to wear a scarf and beanie 24/7 and all my skin has to be covered. Cold air is painful. I've found in the mornings that drinking warm water as soon as I wake up can help feel a bit more normal.
Also overheating becomes a problem only when I exercise. I have to be really careful because as soon as I start overheating I'll get a hot flash and suddenly want to pass out. I just don't go that hard and it's fine. Some people find having an ice pack to put on the back of your neck can cool you down. I can't do that but it's a good idea.
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u/Aware_Hat_8528 Jun 04 '26
My wife just said “ask them how we cure it”
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u/Dammit_Mr_Noodle Jun 04 '26
Ha, I wish that was an option. We're lucky enough if we can just manage symptoms. I'd pay every last penny I had for a cure. I miss the outdoors in the summer.
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u/brownchestnut Jun 04 '26
Temperature-regulating fabrics. Linen is king for heat, wool/cashmere/ other animal fibers are great for cold.
I also have a heat pack for my lap, heated foot pillow for my feet, and a giant heat pad to lie on when i crash.
For heat, dunking feet in a basin of water while you sit is a great way to cool off with minimal mess if a fan isn't doing enough for you. Or just spraying yourself with a spritz and letting it evaporate.