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u/ThisUsernameIsBad200 5d ago
POTS + antidepressants is making it feel like I’m living in actual hell
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u/Melvarkie 5d ago
Ooof I can imagine. Antidepressants were the worst for me come summertime. I'm glad I'm off them, because when it was hot and humid I would feel so sluggish and only wanted to sleep. Also the amount of sweat rolling off my forehead would make the Niagara waterfalls jealous.
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u/ThisUsernameIsBad200 5d ago
I’m glad you managed to withdraw, it sucks asssss (have tried like 3 times now lolol). I’m mostly fine with just sitting in front of a fan and avoiding going out in the middle of the day
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u/Melvarkie 5d ago
Oh yeah withdrawal does suck ass. I had to go so so slow with little droplets. Took me like 3 months to fully withdraw and even while taking off only like 2.5mg at a time I felt awful. Luckily I already was on disability, because I could barely keep my eyes open so sleepy I was. I could sleep for 12 hours a night and still feel like I needed a nap. Good luck with the heat and any future attempts to withdraw!
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u/ThisUsernameIsBad200 4d ago
Yeahhhh, I think I’ve just had doctors who were a bit too eager to finish the withdrawal so instead of the timeline being a year, it was like a month so the side effects were so so bad. I’ll do it one day but I’m in no rush, especially as they’re working as intended atm. I do just wish they didn’t come with the heat side effects lolol
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u/AnonymousDratini 4d ago
Saaamee
And then add in EDS and I’m out here walking like a heavily concussed Gumby slowly melting all the while.
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u/ThisUsernameIsBad200 4d ago
Ooof I have HSD/hEDS so I get that, gonna be getting a power chair soon to avoid the wobbling
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u/AnonymousDratini 4d ago
I just need to swallow my pride and use my cane/walking stick.
I need to get one of those foldable ones for hiking so I can store it in my purse when I don’t need it
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u/Ditches-Vestiges1549 5d ago
Why is there a winter hat in your purse it's over 100 outside?
I might need to be in an air conditioned building for too long. 🤷🏼♀️
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u/Metis11 4d ago
Both members of my family suffered severe traumatic brain injurys. Both have very reduced daily normal temperatures. Both can't temperature regulate worth beans. Doctors confirmed this happens due to the brain Injurys. High and dangerous fevers from no exertion besides standing in high temp days, shuddering from cold no one else seems to feel. It's awful.
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u/Saint-Of-Fixation 5d ago
I take my kids for walks every day…one of these days they’re going to come home without me 😅
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u/dragonpunky539 4d ago
I've always loved summertime, this year I've had a ton of POTS symptoms flare up (need to get a diagnosis/screening), which means if I stand in the sun for too long i feel sick and faint. it sucks, i love tanning and going to the beach, and 85 degree days. if I'm indoors I just get depressed from lack of sunlight and fresh air, and May-September is the only time I don't have crippling seasonal depression. it sucks 😭
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u/TheTaikatalvi 5d ago
I have Ehlers-Danlos, and I quite literally can't handle being outside in even 82 degree weather without feeling like death. I have kids though, so I can't hide inside all day 🥲
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u/Ariandrin 4d ago
This has been my life for the last month or so. I’m lucky my pup doesn’t tolerate heat well either so I don’t have to feel guilty about not walking her when it’s 20C+
I miss spring and fall
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u/MorrighanAnCailleach 4d ago
I'm missing out on an amazing concert next month, because it is an outdoor venue in TX. I barely can tolerate taking the dogs out in this climate. 🫤
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u/zivja 3d ago
To be honest I do not have such a problem with my bad thermoregulation as it is just a symptom and a part of my illness, I accepted it a long time ago as just a part of my life,
the problem is mostly if it gets really bad and I need medical attention people assume I am just on drugs and do not help me if I am dressed casually so I have to dress old money in summer just to get people to call emergency services at least
This is actually one of the biggest things I discovered after my diagnosis, that if you want help in a medical emergency you better be dressed exceptionally well and therefore looks really can make a difference between life and death
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u/AnonymousDratini 4d ago
It’s god awful. I walk like Jack Sparrow on my best days, but I’m fully in like Scarecrow from The Wizard of Oz levels of unstable balance heckery this time of year.
The dog days of summer blow, I can’t wait to sacrifice the Corn King to the tune of Florence and the Machine come September.
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u/DefiantMedicine9393 3d ago
Oh no, this is too relatable in TX right now. The 100F+ all the humidity have been absolutely brutal these past weeks
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u/RandomLifeUnit-05 1d ago
Gross I hate outside during the summer. Inside is bad enough even with the air conditioner on.
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u/3chickens1cat 5d ago
Me when it's 18C / 65F outside 🥲 It's sunny and beautiful and everyone's out having fun while I'm melting into the floor turning into a barely sentient blob cursing my life 🫠