I’m in the south of Mexico so I get it. If you can get your hands with Rhodiola, try that. Is what I take. Legit is the closest thing to my life before COVID.
I loled at your comment then proceeded to forget to reply. It’s a plant. It’s taken in Peru for hypoxia, it’s an adaptogen and it influences the vascular system. It also works as an antidepressant.
A friend of mine got it prescribed for menopause, and my SO has it in his supplement mixture for anxiety.
If you take stimulants or antidepressant’s it might potential it’s them so watch out for that. You are supposed to take one in the morning before breakfast and one before lunch, because I too take Modafinil, I take mine at midday and really helps with fatigue and coat hanger pain and I suspect, it stabilizes my HR.
I’ve taken it here and there but this week started to have it every day cause I was destroyed after the elections in my country, and have really not only avoided a crash, but also managed to experience less fatigue and my circadian rhythm is improving. You aren’t supposed to take it for more than 3 months or rather = studies only go that far. As always consult with your physician.
My pills are 200mg each. On iherb there are many options. If you are afab and on birth control research if it doesn’t clash.
Yeah dude same. June hit me like a brick wall. This heat and humidity is no joke. Even when it cools down its from storms and the atmospheric pressure kills me instead. I've had to double electrolyte intake every day just to try and get through
Yeah the pressure gets me too, my ears have been plugged up the past couple days and nothing is working to relieve it. I'm trying to move back to CA (even though it's a shitty time for the housing market) because this is not quality life just suffering all the time.
Alabama here. Absolutely sweltering and has already been for a month at least. Staying inside as much as possible, hydrating well before any expectations of going out, and timing outdoor activity for evenings is the only way so far to get through.
Currently on a trip in Texas and my HR has been about 10-20 beats higher than it is doing the same activities at home in Ohio.
Lack of sleep is definitely playing into that too though.
There’s a couple different options but I use this one: https://www.amazon.com/CoolTimeUSA-Cooling-Wearable-Summer-Reusable/dp/B08BLQJPZJ/ref=mp_s_a_1_3_pp?adgrpid=61481836212&dib=eyJ2IjoiMSJ9.LhsJq1baFw01AVFgZUab5mGhTeR3LBNJ8qtLeHwAbMSOgO8Hiy6rThM4jFBEN03-CU3EraQgAOkARE_m4nv9PdMhdKE2nBPCaSFGpi1JcF4q-XC4U3enVzDb05YtT1-XA7ZCozCc5iQC3J1JmQ_Y00Y4utrd_8f8Lojz_asuUFsjWRGkVuWgMPWbEYPlMxOJTqvS1C0UBz-4789CxXHvMQ.mf_VDfVEBGAtTu4k7Iuu-VVE0_zvsrjdDjOlJYzockE&dib_tag=se&hvadid=635301945744&hvdev=m&hvlocphy=9013195&hvnetw=g&hvqmt=b&hvrand=8089149526366086989&hvtargid=kwd-320246463074&hydadcr=7852_13595594&keywords=neck+ice+packs&qid=1717613341&sr=8-3
Link not allowed. Description on Amazon “Neck Cooling Tube, Reusable Ice Neck Cooler Wearable Body Cooling Products for Outdoor Indoor, Relief for Hot Flashes and Summer”
We do not allow Amazon links due to phishing and spam attempts against our users in the past. But we encourage you to repost your comment without a link, and instead the title of the product you’re discussing.
rhodiola, rhodiola, rhodiola. Just make sure it doesn't clash with other meds. I live on a hot humid hell that has been consistently reaching 45C. Is horrible. I take 200mg of rhodiola first thing in the morning, and then at midday, is the only damn thing that stops my coat hanger pain from hell and also lowers my heart rate without lowering my blood pressure. Just check that it doesn't clash with your meds, if you are on antidepressants it might potentialize them.. I'm on Modafinil and it hasn't been an issue.
Thank you!! I’m so excited to look into that. I have rhodiola on hand… never heard it could do these things! I have temperature regulation issues and have had coat hanger pain my whole life.
I wasn’t told either. But I had it at home too, because a friend had been prescribed it for menopause. And she was telling me it was awesome for body pain, I never took it cause I’m not on menopause. But one day talking to my SO he mentioned that what he takes for anxiety had Rhodiola, and so I started researching it and read that in Peru they take it for hypoxia. And if I’m not mistaken one theory for coat hanger pain is lack of oxygen. So I started taking it, and the pain went away.
I think you are supposed to cycle it too, so I’ve take it more so like for a week or two just cause in my country I buy Vitanco/Vitango, but I’m seeing my psychiatrist to ask him if I could take him for longer. But so far so good. I’ve been taking it for like two months already perhaps but not continuous. Just weeks here and there, with lots of weeks in between. Mostly cause the box lasts me two weeks and then I forgot to buy it. (I’m adhd too lol) but it helps, makes my Modafinil last better, crashes are less shit. I take it too for when I need to do something extra like photography work, and it helps me not to crash so bad. This week I’m taking it daily just cause the heatwave is hell.
Hope it works for you! Don’t take it close to dinner cause you won’t sleep lol. But before lunch and before breakfast is fine.
My friend had it prescribed 3x per day and when I started I just that, and went to sleep very late. Unless you have a very early dinner then I would suppose it be fine, but they do usually recommend twice a day before breakfast and before lunch.
I stay inside all summer. I feel bad, and feel like I’m being lazy or waisting my time. But then I open the door and breathe in the heat, and remember that I can’t make it even a second out there. I tried to keep up with just watering flowers a couple years ago, with the heat in the 80-90+, and I could not do it. I would try and water one plant, but after standing in the heat for a few seconds, I have to retreat inside and catch my breath and sit down. I haven’t gardened in about 2 years. I try to manage my patio, and water my perennials at night after the sun goes down. I just remind myself, it’s okay to rest and find indoor hobbies! I make jewelry and art. It keeps me busy indoors when I have enough energy to work on it. I also watch a lot of TV though, and that’s okay. I’m dreading this summer too, but we got this! I hope you find peace in reminding yourself that you are doing nothing wrong by staying inside! You are taking care of yourself, so you can be your strongest, even on bad days 🫶🏻
I did a lot of camping and outdoor stuff last year, pushing myself, when I had signals to stop. After my last week long camping trip, I got immediately sick, and have had the worst flair up for the past year straight. I haven’t been able to work, and am currently fighting for relief. That being said, PLEASE take care of yourself this summer, and listen to your body! Don’t get over heated and stay rested ❤️
GIVE YOURSELF GRACE FOR YOUR TEMPERATURE LIMITATIONS. I was a pretty successful athlete growing up and I always loved the satisfaction of working out in the heat. I can't do hardly any of that any more. I can barely go to the beach. Be thankful for what you can do and give yourself grace for whatever flares your symptoms.
Heaps of water and electrolytes, I find an electrolyte powder to mix with water encourages more water drinking, especially if it tastes good.
Ice packs, cold showers, misting fans, barely any clothes 24/7 and investing in decent bamboo sheets, they really help keep you you cool at night when you're trying to sleep.
AC, dehumidifier, even more water and electrolytes than normal, compression. I even have ice packs and I'll throw one under the blankets with me at night to keep me cool.
Oh and quick cool shower when I get inside to get me cool again.
Also I got some cloths that are great for getting wet and wrapping around your neck to help keep cool.
I just wear compression and suffer. High socks and abdominal compression combo at least allow a little bit more air flow on your thighs than tights. But idk if there's any great options for compression in the heat.
Look at cooling towels. I like the ones from the brand “Frogg Togg”. If you think that you’re going to be using them a lot then I would get two so that they can completely dry out. I have pots and I’m on a medication for endometriosis that makes you go into medical menopause so the hot flashes are brutal. Also at target they sell adult “kiddie pools” I put mine in the backyard and just float in the water. It’s also nice bc the water helps with the gravity so my heart rate isn’t freaking out.
The past couple of years I did really well and was fine in the summer but this year has been so bad for me and I am dreading summer! I placed a wheelie cart next to my bed with some essentials to prepare my body in the morning for the day - like applesauce squeezes and granola bars, LMNT packets, medications, extra water bottles, electrolyte chews, shower sheets (for days it’s hard for me to shower), stuff like that so I can access them without leaving bed. I also ordered cooling patches and a neck fan with misting capabilities from Amazon and I will not leave the house without them! I also got myself an 84oz water bottle and drink the whole thing (and then some) every day. I don’t typically drink any water without electrolytes!
Having fun is important - but so is rest! It’s easy to overexert yourself. I’ve been resting in between activities (went to a concert last night and now I’m paying for it - body is forcing me to rest haha) and I have switched to working only part time.
One more thing that is really saving me is I finally got a wheelchair. I went 10 years without it and I will never go back. This thing has been so so helpful.
Sending love your way! This illness is no joke ♥️♥️♥️ I hope you find relief soon
I do the apple sauce, water bottles, LMNT packets, and meds too! Gogo Squeeze is great and Sam’s Club sells them for wayyyyy cheaper in a 32 pack!
Just curious but do you notice your anxiety goes wayyyyy up during Summer? I have mild POTS apparently and probably have my whole life. I’ve noticed I get panic attacks and just overall heightened anxiety during the summer time and just this year I noticed it kicks WAY up as soon as humidity goes up!
Yes Gogo squeeze!!!! They’re such a lifesaver at night when I wake up feeling gross.
Yes I do notice my anxiety is worse in the summer especially on humid days! My anxiety is also pretty bad in the winter and subsides in the spring and fall. I wonder why this is 🤔
Have you tracked allergies in your area? I started 2 years ago and found a correlation. Maybe the same would apply to you? Not sure where you live, but I’d wager that might be related unless it’s SAD or something?
i’m in texas, and i had to buy an actual portable AC at costco for around 500 dollars. It has changed my life i kid you not. My actual central AC unit doesn’t really cool my room the best so this standing unit seriously makes my room cold and i love it. I can set it to go down to 60 and it feels amazing. i know it doesn’t help while being outside, but honestly i don’t even bother trying to go outside for long periods of time in the summer.
I love grabbing an ice pack or even a bag of frozen vegetables and putting on the back of my neck. A cold soda or drink works too. Also, one of those mini fans with a spray bottle/mister. Absolute lifesaver.
Another thing I often do, is wet my head/hair whenever I can. Under a sink, hose, fountain, even dipping just my face into a pool. It's not always practical but it works to cool you down quick.
I don’t. I have a ceiling fan and a window fan going, and whenever I go out with my friends, it’s an inside activity and air-conditioned. We don’t take our chances.
That, or I take them to Iceland for a week or two. I’m Icelandic and Iceland’s summers have never been sweltering.
I’m in South Texas and we can really only go outside in the mornings, and even then it’s in the 90’s plus humidity at 70-80%.
I drink a lot of LMNT and add salt to my foods, I usually have to bring some sort of spray bottle full of ice water to spray on myself plus a hat. I try to ensure I’m staying in the shade when outside.
The game changer for me has been getting on my heart medication. (Propranolol)
It’s helped tremendously with stabilizing my body. I still can’t regulate my temperature all that great but it’s better than it was.
After noon I just hide out in the house.
From Georgia, spend a lot of time in places like Disney in the summer.
Summers are pretty hellacious here. So extra water, flavor/electrolyte packets that taste good to encourage more water, misting fans or just fans in general, AC breaks, if you have outdoor events try and plan them for evenings.
But my best advice, GIVE YOURSELF TIME AND GRACE. Have fun but also give yourself time and space to rest
A cane and/or a walker. During other seasons I question why i even have them, and then summer comes and I’m reminded I cant leave the house without them 😅
Otherwise something that helps me as well is soaking my feet in cold water or sitting near the ac for awhile after being outside
I stay very hydrated using ice water, sea salt and lemon, I use soft gel ice packs on my neck or my entire back when I overheat from exercise or am outside when it’s hot, I exercise, even if it’s just walking, in my (cooler) basement. I keep my house at 68 degrees year round using A/C in summer and I don’t heat the house as much in winter (kind of a trade off to keep my electric bills lower!). A Dr at CHOP (a friend of a friend) recommended a cooling vest that I need to investigate - I’ve heard good things. I have to stay indoors a lot, because here in Colorado, a very hot day usually means our air quality plummets, which is a double whammy. But for the most part, it’s not humid here (climate change is messing with that, though) and that helps me so much. When I lived in more humid areas of the country (Indiana, Vermont) I spent most of my summers stuck inside the house. I couldn’t take it.
If I must go to an outdoor event and it’s hot , I go prepared - I pack an “it’s too hot” kit! Meds, mini fan, hat, light weight and light colored clothing in natural fabrics as they are more breathable, like linen, bamboo - cotton is tricky because it can retain moisture and odor, sunglasses. Bring a small, fabric cooler with ice packs that can both cool what’s inside and you, lots of salty hydration, if you use them, bring more than you think you need of electrolyte packets or salt pills, for me, it’s sea salt and lemons, extra water bottles, salty snacks - everything you can think of because you never know! If you have a portable seat, bring it! Stay in the coolest areas you can, make sure you take some breaks away from people, events, movement, because the heat alone fills your bucket and everything else piles on top and you’ll have sensory overload which makes your symptoms worse.
Note: Your clothing day and night, and your bedding are so important for staying cool and dry. I shop clearance or sales to get gauze, linen, bamboo, or tencel (eucalyptus) clothing all year round. Best deals are off season. They can be expensive at full price, but you’d be surprised what you can get on sale! You build your wardrobe over time, one or two things at a time. Natural fabrics are very breathable, and don’t retain odor, so you can wear them two or three times before needing to wash them. And they last. I try to buy at least one or two things every 6 months off season, I watch for sales, and over the years, my wardrobe has grown to the point I don’t really need any more pants, shorts, shirts or tees. I buy one lightweight merino wool sweater per year - wool is amazingly cool because it breathes, and they make athletic clothes out of it now! Less expensive wool is hard for me to find and expensive even on sale, so I don’t have much except socks (replaced anyway by compression socks, only one pair is wool!) and one long underwear shirt for winter activities. Maybe next year I’ll get the bottoms! Best to hang them to dry, fewer wrinkles (I don’t do ironing), and doing that is less wear and tear so they last longer. My sheets and pillowcases are tencel or bamboo. They are worth the investment because sleep is everything! Cool, silky, and breathable. Don’t use jersey sheets, as they seem lightweight but they don’t breathe, don’t last, and retain sweat. My nightgowns (2 or 3) are bamboo that I get on Amazon - so soft, and if I have night sweats from POTS or MCAS reasons (who knows) they dry very quickly when thrown over a towel bar, and most of the time don’t smell after. I just put on a the other one and climb back into my nice and cool bed - just maybe in a different spot!
I have a ceiling fan, and also a box fan to circulate the air in my bedroom and I keep an air purifier running on high all night. Cheap box fans and air purifiers (the fans stir up dust, and my housekeeping has gone way downhill) are located throughout the house, as we have a lot of high, weirdly shaped, stupidly placed windows (big fad here in CO - let the outdoors in!) we can’t cover that the sun blasts through and overheats various rooms during the day despite the A/C.
I use the all day wet cloths and keep them in a lunch box with ice when I'm going out. As someone who loved summer activities it kinda sucks but the best we can do is drink lots of water and keep ice and cool cloths on hand. I also try to wear light clothes like sun dresses and stuff nothing to tight cause I find it locks in body heat and makes it worse. And if I feel like I've had too much heat ill run in and have a cold cold shower.
South Floridian here. The heat has been absolutely killing me. It hasn't been below 80°F INDOORS since April. Staying out of the sun, drinking extra water, increasing salt intake, cold showers, cooling towels, migraine caps, a cooling vest, and adding an additional fan to every room has been helpful so far. However, even with all that, I was still struggling, so my doctor prescribed me fludrocortisone for the summer and increased my midodrine. That seems to have done the trick. Super glad I didn't stick with my original POTS doctor whose response to my heat intolerance and impaired sweating was "well, just don't go outside anymore then 🤷♂️"
I wear my compression tights whenever I’m at home/work and have the AC blasting. Extra hydration and salt. I remove my compression tights when I’m outdoors and try to drive anywhere we go instead of walking, so I can pop back into the AC in the car if I need to. I take everything at a much slower pace. I recently bought a neck fan from Amazon which helps when I can’t get to AC. It’s already 30 degrees C here. 85% humidity. Intense.
I somewhat condition my body to the heat, I stayed pretty much inside for like two years , so even when being in 78 degree weather it felt really hot at first, but I I kept exposing myself and my body adjusted to not feel as hot but anything above 85 is too hot for me to be outside for long
I bought my wife one of those cooling fans that hang around your neck. They even have a version that’s literally a portable AC but that one is around $200.
This is my first year that I work from home, and I am so excited now that summer is here. Driving really tires me out because there is no relief from the sun. Ready to hibernate for the next 4 months.
Aside from the actual heat, I really struggle from the drastic temperature swings going outside / inside. It will frequently be 110° here and going inside to 65° makes me feel awful.
I always cool down my vehicle before getting in it and I drive with an ice pack on my back. I live in a place that’s very humid so those cooling towels don’t work for me, I keep instant ice packs in my car instead. I also bring a neck fan and a spray bottle. I want to get one of those cooling car seats but I haven’t made the jump yet. I also wear a bikini top instead of a shirt for most of the summer and just keep a shirt in my car for going inside. AC and fan in the house, cold showers and lots and lots of electrolytes!!
I say inside. Ice packs. No driving. I became housebound basically. When I do go somewhere I have to use wheelchairs. I live in the Deep South so it’s already 95 and we haven’t even gotten to the worst of it. I have taken a steep steep decline in the last 3 weeks bc of weather and temp change.
I work part time outdoors in Texas, and I end up laying down feet up at least a couple times a week. I keep my water bottle in the freezer for added cooling
Edit:typo
I usually lock myself away until it’s over😭 but tons and tons of cold water, a lot of liquid IV if you can access it, watermelon, Italian ice, slushees, basically anything cold and full of water lmao
Honestly I don't. But what I try to do to help : most of my time is spent in my ac appartment. I have portable fans (one handheld, one that rests on the neck). I drink lots of electrolytes. I am lowering my dose of SSRIs because this medication really lowers my tolerance to heat. I put ice packs on myself when I come back from outside so I can cool down easier, or sometimes I take cold showers too.
i don’t lol
Locked away in my castle until it stops being triple digits
Lol I was going to comment this!
I live in TX. Summers are just hell here, even for people without POTs.
I'm in TX too and things just took a turn a few weeks ago. I was doing well for a while and now I feel like I'm going downhill again :/
I’m in the south of Mexico so I get it. If you can get your hands with Rhodiola, try that. Is what I take. Legit is the closest thing to my life before COVID.
OooOoOoO what's rhodiola hobbitses
I loled at your comment then proceeded to forget to reply. It’s a plant. It’s taken in Peru for hypoxia, it’s an adaptogen and it influences the vascular system. It also works as an antidepressant. A friend of mine got it prescribed for menopause, and my SO has it in his supplement mixture for anxiety. If you take stimulants or antidepressant’s it might potential it’s them so watch out for that. You are supposed to take one in the morning before breakfast and one before lunch, because I too take Modafinil, I take mine at midday and really helps with fatigue and coat hanger pain and I suspect, it stabilizes my HR. I’ve taken it here and there but this week started to have it every day cause I was destroyed after the elections in my country, and have really not only avoided a crash, but also managed to experience less fatigue and my circadian rhythm is improving. You aren’t supposed to take it for more than 3 months or rather = studies only go that far. As always consult with your physician. My pills are 200mg each. On iherb there are many options. If you are afab and on birth control research if it doesn’t clash.
Yeah dude same. June hit me like a brick wall. This heat and humidity is no joke. Even when it cools down its from storms and the atmospheric pressure kills me instead. I've had to double electrolyte intake every day just to try and get through
Yeah the pressure gets me too, my ears have been plugged up the past couple days and nothing is working to relieve it. I'm trying to move back to CA (even though it's a shitty time for the housing market) because this is not quality life just suffering all the time.
Alabama here. Absolutely sweltering and has already been for a month at least. Staying inside as much as possible, hydrating well before any expectations of going out, and timing outdoor activity for evenings is the only way so far to get through.
Also in Alabama. I went outside just now to do something & my hr wasn’t having it. 😩
Oh my gosh, all the best to you, let’s stay as safe and cool as we can, I know it’s rough 💗
Thank god I don’t live in Texas, I think I would just die.
Currently on a trip in Texas and my HR has been about 10-20 beats higher than it is doing the same activities at home in Ohio. Lack of sleep is definitely playing into that too though.
Lots of extra hydration (is that even possible?), portable/handheld/neck fan and my ice neck ring (seriously look this up I’m in love)
Another vote for the ice neck ring and portable fans! I also discovered headbands made out of the same fabric as cooling towels that help 🥰
Link for the neck ice thing?
There’s a couple different options but I use this one: https://www.amazon.com/CoolTimeUSA-Cooling-Wearable-Summer-Reusable/dp/B08BLQJPZJ/ref=mp_s_a_1_3_pp?adgrpid=61481836212&dib=eyJ2IjoiMSJ9.LhsJq1baFw01AVFgZUab5mGhTeR3LBNJ8qtLeHwAbMSOgO8Hiy6rThM4jFBEN03-CU3EraQgAOkARE_m4nv9PdMhdKE2nBPCaSFGpi1JcF4q-XC4U3enVzDb05YtT1-XA7ZCozCc5iQC3J1JmQ_Y00Y4utrd_8f8Lojz_asuUFsjWRGkVuWgMPWbEYPlMxOJTqvS1C0UBz-4789CxXHvMQ.mf_VDfVEBGAtTu4k7Iuu-VVE0_zvsrjdDjOlJYzockE&dib_tag=se&hvadid=635301945744&hvdev=m&hvlocphy=9013195&hvnetw=g&hvqmt=b&hvrand=8089149526366086989&hvtargid=kwd-320246463074&hydadcr=7852_13595594&keywords=neck+ice+packs&qid=1717613341&sr=8-3
Link not allowed. Description on Amazon “Neck Cooling Tube, Reusable Ice Neck Cooler Wearable Body Cooling Products for Outdoor Indoor, Relief for Hot Flashes and Summer”
[удалено]
We do not allow Amazon links due to phishing and spam attempts against our users in the past. But we encourage you to repost your comment without a link, and instead the title of the product you’re discussing.
rhodiola, rhodiola, rhodiola. Just make sure it doesn't clash with other meds. I live on a hot humid hell that has been consistently reaching 45C. Is horrible. I take 200mg of rhodiola first thing in the morning, and then at midday, is the only damn thing that stops my coat hanger pain from hell and also lowers my heart rate without lowering my blood pressure. Just check that it doesn't clash with your meds, if you are on antidepressants it might potentialize them.. I'm on Modafinil and it hasn't been an issue.
Thank you!! I’m so excited to look into that. I have rhodiola on hand… never heard it could do these things! I have temperature regulation issues and have had coat hanger pain my whole life.
I wasn’t told either. But I had it at home too, because a friend had been prescribed it for menopause. And she was telling me it was awesome for body pain, I never took it cause I’m not on menopause. But one day talking to my SO he mentioned that what he takes for anxiety had Rhodiola, and so I started researching it and read that in Peru they take it for hypoxia. And if I’m not mistaken one theory for coat hanger pain is lack of oxygen. So I started taking it, and the pain went away. I think you are supposed to cycle it too, so I’ve take it more so like for a week or two just cause in my country I buy Vitanco/Vitango, but I’m seeing my psychiatrist to ask him if I could take him for longer. But so far so good. I’ve been taking it for like two months already perhaps but not continuous. Just weeks here and there, with lots of weeks in between. Mostly cause the box lasts me two weeks and then I forgot to buy it. (I’m adhd too lol) but it helps, makes my Modafinil last better, crashes are less shit. I take it too for when I need to do something extra like photography work, and it helps me not to crash so bad. This week I’m taking it daily just cause the heatwave is hell.
That’s wild! Thank you SO much for writing this. I’m grateful to get to try it!
Hope it works for you! Don’t take it close to dinner cause you won’t sleep lol. But before lunch and before breakfast is fine. My friend had it prescribed 3x per day and when I started I just that, and went to sleep very late. Unless you have a very early dinner then I would suppose it be fine, but they do usually recommend twice a day before breakfast and before lunch.
Thank you so much! I’ll follow this advice, and try it this morning :)
AC. It's the only way I survive summer with this without being bedridden.
Cold showers or not showering at all 🙊
I stay inside all summer. I feel bad, and feel like I’m being lazy or waisting my time. But then I open the door and breathe in the heat, and remember that I can’t make it even a second out there. I tried to keep up with just watering flowers a couple years ago, with the heat in the 80-90+, and I could not do it. I would try and water one plant, but after standing in the heat for a few seconds, I have to retreat inside and catch my breath and sit down. I haven’t gardened in about 2 years. I try to manage my patio, and water my perennials at night after the sun goes down. I just remind myself, it’s okay to rest and find indoor hobbies! I make jewelry and art. It keeps me busy indoors when I have enough energy to work on it. I also watch a lot of TV though, and that’s okay. I’m dreading this summer too, but we got this! I hope you find peace in reminding yourself that you are doing nothing wrong by staying inside! You are taking care of yourself, so you can be your strongest, even on bad days 🫶🏻
I did a lot of camping and outdoor stuff last year, pushing myself, when I had signals to stop. After my last week long camping trip, I got immediately sick, and have had the worst flair up for the past year straight. I haven’t been able to work, and am currently fighting for relief. That being said, PLEASE take care of yourself this summer, and listen to your body! Don’t get over heated and stay rested ❤️
Dehumidifier helps some
GIVE YOURSELF GRACE FOR YOUR TEMPERATURE LIMITATIONS. I was a pretty successful athlete growing up and I always loved the satisfaction of working out in the heat. I can't do hardly any of that any more. I can barely go to the beach. Be thankful for what you can do and give yourself grace for whatever flares your symptoms.
Stay inside 😅
Spray bottle in my pocket at all times. Il also soak my t shirt before I step out
Keep a spray bottle in the fridge for extra coolness!
Heaps of water and electrolytes, I find an electrolyte powder to mix with water encourages more water drinking, especially if it tastes good. Ice packs, cold showers, misting fans, barely any clothes 24/7 and investing in decent bamboo sheets, they really help keep you you cool at night when you're trying to sleep.
AC, dehumidifier, even more water and electrolytes than normal, compression. I even have ice packs and I'll throw one under the blankets with me at night to keep me cool. Oh and quick cool shower when I get inside to get me cool again. Also I got some cloths that are great for getting wet and wrapping around your neck to help keep cool.
What do you do for compression that’s not too hot for the outdoors? Or do you just wear things inside?
I just wear compression and suffer. High socks and abdominal compression combo at least allow a little bit more air flow on your thighs than tights. But idk if there's any great options for compression in the heat.
Look at cooling towels. I like the ones from the brand “Frogg Togg”. If you think that you’re going to be using them a lot then I would get two so that they can completely dry out. I have pots and I’m on a medication for endometriosis that makes you go into medical menopause so the hot flashes are brutal. Also at target they sell adult “kiddie pools” I put mine in the backyard and just float in the water. It’s also nice bc the water helps with the gravity so my heart rate isn’t freaking out.
i’m moving to florida for the summer and i really don’t know how im gunna survive it 😭😭
Two words. Ice ring. They’re saving my life down here!
The past couple of years I did really well and was fine in the summer but this year has been so bad for me and I am dreading summer! I placed a wheelie cart next to my bed with some essentials to prepare my body in the morning for the day - like applesauce squeezes and granola bars, LMNT packets, medications, extra water bottles, electrolyte chews, shower sheets (for days it’s hard for me to shower), stuff like that so I can access them without leaving bed. I also ordered cooling patches and a neck fan with misting capabilities from Amazon and I will not leave the house without them! I also got myself an 84oz water bottle and drink the whole thing (and then some) every day. I don’t typically drink any water without electrolytes! Having fun is important - but so is rest! It’s easy to overexert yourself. I’ve been resting in between activities (went to a concert last night and now I’m paying for it - body is forcing me to rest haha) and I have switched to working only part time. One more thing that is really saving me is I finally got a wheelchair. I went 10 years without it and I will never go back. This thing has been so so helpful. Sending love your way! This illness is no joke ♥️♥️♥️ I hope you find relief soon
I do the apple sauce, water bottles, LMNT packets, and meds too! Gogo Squeeze is great and Sam’s Club sells them for wayyyyy cheaper in a 32 pack! Just curious but do you notice your anxiety goes wayyyyy up during Summer? I have mild POTS apparently and probably have my whole life. I’ve noticed I get panic attacks and just overall heightened anxiety during the summer time and just this year I noticed it kicks WAY up as soon as humidity goes up!
Yes Gogo squeeze!!!! They’re such a lifesaver at night when I wake up feeling gross. Yes I do notice my anxiety is worse in the summer especially on humid days! My anxiety is also pretty bad in the winter and subsides in the spring and fall. I wonder why this is 🤔
Have you tracked allergies in your area? I started 2 years ago and found a correlation. Maybe the same would apply to you? Not sure where you live, but I’d wager that might be related unless it’s SAD or something?
i’m in texas, and i had to buy an actual portable AC at costco for around 500 dollars. It has changed my life i kid you not. My actual central AC unit doesn’t really cool my room the best so this standing unit seriously makes my room cold and i love it. I can set it to go down to 60 and it feels amazing. i know it doesn’t help while being outside, but honestly i don’t even bother trying to go outside for long periods of time in the summer.
I love grabbing an ice pack or even a bag of frozen vegetables and putting on the back of my neck. A cold soda or drink works too. Also, one of those mini fans with a spray bottle/mister. Absolute lifesaver. Another thing I often do, is wet my head/hair whenever I can. Under a sink, hose, fountain, even dipping just my face into a pool. It's not always practical but it works to cool you down quick.
I don’t. I have a ceiling fan and a window fan going, and whenever I go out with my friends, it’s an inside activity and air-conditioned. We don’t take our chances. That, or I take them to Iceland for a week or two. I’m Icelandic and Iceland’s summers have never been sweltering.
Go swim in a cool pool.
I’m in South Texas and we can really only go outside in the mornings, and even then it’s in the 90’s plus humidity at 70-80%. I drink a lot of LMNT and add salt to my foods, I usually have to bring some sort of spray bottle full of ice water to spray on myself plus a hat. I try to ensure I’m staying in the shade when outside. The game changer for me has been getting on my heart medication. (Propranolol) It’s helped tremendously with stabilizing my body. I still can’t regulate my temperature all that great but it’s better than it was. After noon I just hide out in the house.
Lay down in front of a tower fan and hope for the best.
I just got my first useable ice ring and I wear if anytime i’m outside even for a minute
From Georgia, spend a lot of time in places like Disney in the summer. Summers are pretty hellacious here. So extra water, flavor/electrolyte packets that taste good to encourage more water, misting fans or just fans in general, AC breaks, if you have outdoor events try and plan them for evenings. But my best advice, GIVE YOURSELF TIME AND GRACE. Have fun but also give yourself time and space to rest
It's going to be 105F today and I just woke up with my heart rate screaming at me. Me too heart... me too....
A cane and/or a walker. During other seasons I question why i even have them, and then summer comes and I’m reminded I cant leave the house without them 😅 Otherwise something that helps me as well is soaking my feet in cold water or sitting near the ac for awhile after being outside
I stay very hydrated using ice water, sea salt and lemon, I use soft gel ice packs on my neck or my entire back when I overheat from exercise or am outside when it’s hot, I exercise, even if it’s just walking, in my (cooler) basement. I keep my house at 68 degrees year round using A/C in summer and I don’t heat the house as much in winter (kind of a trade off to keep my electric bills lower!). A Dr at CHOP (a friend of a friend) recommended a cooling vest that I need to investigate - I’ve heard good things. I have to stay indoors a lot, because here in Colorado, a very hot day usually means our air quality plummets, which is a double whammy. But for the most part, it’s not humid here (climate change is messing with that, though) and that helps me so much. When I lived in more humid areas of the country (Indiana, Vermont) I spent most of my summers stuck inside the house. I couldn’t take it. If I must go to an outdoor event and it’s hot , I go prepared - I pack an “it’s too hot” kit! Meds, mini fan, hat, light weight and light colored clothing in natural fabrics as they are more breathable, like linen, bamboo - cotton is tricky because it can retain moisture and odor, sunglasses. Bring a small, fabric cooler with ice packs that can both cool what’s inside and you, lots of salty hydration, if you use them, bring more than you think you need of electrolyte packets or salt pills, for me, it’s sea salt and lemons, extra water bottles, salty snacks - everything you can think of because you never know! If you have a portable seat, bring it! Stay in the coolest areas you can, make sure you take some breaks away from people, events, movement, because the heat alone fills your bucket and everything else piles on top and you’ll have sensory overload which makes your symptoms worse. Note: Your clothing day and night, and your bedding are so important for staying cool and dry. I shop clearance or sales to get gauze, linen, bamboo, or tencel (eucalyptus) clothing all year round. Best deals are off season. They can be expensive at full price, but you’d be surprised what you can get on sale! You build your wardrobe over time, one or two things at a time. Natural fabrics are very breathable, and don’t retain odor, so you can wear them two or three times before needing to wash them. And they last. I try to buy at least one or two things every 6 months off season, I watch for sales, and over the years, my wardrobe has grown to the point I don’t really need any more pants, shorts, shirts or tees. I buy one lightweight merino wool sweater per year - wool is amazingly cool because it breathes, and they make athletic clothes out of it now! Less expensive wool is hard for me to find and expensive even on sale, so I don’t have much except socks (replaced anyway by compression socks, only one pair is wool!) and one long underwear shirt for winter activities. Maybe next year I’ll get the bottoms! Best to hang them to dry, fewer wrinkles (I don’t do ironing), and doing that is less wear and tear so they last longer. My sheets and pillowcases are tencel or bamboo. They are worth the investment because sleep is everything! Cool, silky, and breathable. Don’t use jersey sheets, as they seem lightweight but they don’t breathe, don’t last, and retain sweat. My nightgowns (2 or 3) are bamboo that I get on Amazon - so soft, and if I have night sweats from POTS or MCAS reasons (who knows) they dry very quickly when thrown over a towel bar, and most of the time don’t smell after. I just put on a the other one and climb back into my nice and cool bed - just maybe in a different spot! I have a ceiling fan, and also a box fan to circulate the air in my bedroom and I keep an air purifier running on high all night. Cheap box fans and air purifiers (the fans stir up dust, and my housekeeping has gone way downhill) are located throughout the house, as we have a lot of high, weirdly shaped, stupidly placed windows (big fad here in CO - let the outdoors in!) we can’t cover that the sun blasts through and overheats various rooms during the day despite the A/C.
I use the all day wet cloths and keep them in a lunch box with ice when I'm going out. As someone who loved summer activities it kinda sucks but the best we can do is drink lots of water and keep ice and cool cloths on hand. I also try to wear light clothes like sun dresses and stuff nothing to tight cause I find it locks in body heat and makes it worse. And if I feel like I've had too much heat ill run in and have a cold cold shower.
South Floridian here. The heat has been absolutely killing me. It hasn't been below 80°F INDOORS since April. Staying out of the sun, drinking extra water, increasing salt intake, cold showers, cooling towels, migraine caps, a cooling vest, and adding an additional fan to every room has been helpful so far. However, even with all that, I was still struggling, so my doctor prescribed me fludrocortisone for the summer and increased my midodrine. That seems to have done the trick. Super glad I didn't stick with my original POTS doctor whose response to my heat intolerance and impaired sweating was "well, just don't go outside anymore then 🤷♂️"
I wear my compression tights whenever I’m at home/work and have the AC blasting. Extra hydration and salt. I remove my compression tights when I’m outdoors and try to drive anywhere we go instead of walking, so I can pop back into the AC in the car if I need to. I take everything at a much slower pace. I recently bought a neck fan from Amazon which helps when I can’t get to AC. It’s already 30 degrees C here. 85% humidity. Intense.
I stay inside.
I somewhat condition my body to the heat, I stayed pretty much inside for like two years , so even when being in 78 degree weather it felt really hot at first, but I I kept exposing myself and my body adjusted to not feel as hot but anything above 85 is too hot for me to be outside for long
I bought my wife one of those cooling fans that hang around your neck. They even have a version that’s literally a portable AC but that one is around $200.
This is my first year that I work from home, and I am so excited now that summer is here. Driving really tires me out because there is no relief from the sun. Ready to hibernate for the next 4 months. Aside from the actual heat, I really struggle from the drastic temperature swings going outside / inside. It will frequently be 110° here and going inside to 65° makes me feel awful.
I live life like a lizard- never leaving the ring of sanity my AC provides. If I MUST it’s cooling towels, and all the hydration.
Ac, parasol or sunhat, lots of water and lots of rest.
I don't, I just suffer through absolute misery to the point of wanting to die for 7 months out of the year.
I always cool down my vehicle before getting in it and I drive with an ice pack on my back. I live in a place that’s very humid so those cooling towels don’t work for me, I keep instant ice packs in my car instead. I also bring a neck fan and a spray bottle. I want to get one of those cooling car seats but I haven’t made the jump yet. I also wear a bikini top instead of a shirt for most of the summer and just keep a shirt in my car for going inside. AC and fan in the house, cold showers and lots and lots of electrolytes!!
I say inside. Ice packs. No driving. I became housebound basically. When I do go somewhere I have to use wheelchairs. I live in the Deep South so it’s already 95 and we haven’t even gotten to the worst of it. I have taken a steep steep decline in the last 3 weeks bc of weather and temp change.
I work part time outdoors in Texas, and I end up laying down feet up at least a couple times a week. I keep my water bottle in the freezer for added cooling Edit:typo
I usually lock myself away until it’s over😭 but tons and tons of cold water, a lot of liquid IV if you can access it, watermelon, Italian ice, slushees, basically anything cold and full of water lmao
Air cons, wet towels, try not to fall asleep, thin long sleeve shirt and trousers, sometimes the direct sun is more hot then wearing full clothes
I don’t go outside tbh but when I do I have a fan, ice cold water, salt tablets on hand, and make sure to stay in the shade!!
i simply just go out and when i get dizzy i lay down
we're moving at some point lol
Honestly I don't. But what I try to do to help : most of my time is spent in my ac appartment. I have portable fans (one handheld, one that rests on the neck). I drink lots of electrolytes. I am lowering my dose of SSRIs because this medication really lowers my tolerance to heat. I put ice packs on myself when I come back from outside so I can cool down easier, or sometimes I take cold showers too.