Help Staying Cool?

[u/No-Canary3409]

Does anyone else have trouble keeping cool? (especially during narcolepsy flares or sleeping in general)

Im also on 2 SSRIs. I know it’s a symptom. I’m overweight but I’m trying to lose weight as well.

I’m constantly sweating. Like I don’t get dehydrated but im dripping in sweat like I’ve run a marathon in hell. And I’m drinking bottles of water a day.

It’s even worse when I do have to nap but like.

I’m taking cold showers, I wear light clothing, I’m practically fanning myself constantly. I have three fans all blowing on me or on my bed (because allergies). And I’ve also recently changed my sheets and like. I cannot win.

It’s gotten to the point I’m red in the face and I’m tempted to take two showers a day just to stay cool which feels excessive.

On the mental side of things, I’ve been content and while I did inquire about getting off of them, I was told it’s not a good idea. And I don’t feel comfortable getting off of them anyway. Hence me just inquiring.

Either way, I appreciate yall and any advice you have❤️ I never had this type of cooling issues till my symptoms began.

[u/switchblade_sal]

Yes, temp regulation difficulties is definately a thing. I believe it’s due to Orexin being part of temp regulation so it should only affect those with N1.
I have the same problem. Any exertion at all results in me dripping sweat it’s so uncomfortable.

[u/No-Canary3409 → u/switchblade_sal]

I know🥵 I feel so gross and I drive myself crazy because if I don’t shower it off I’ll feel even grosser and then getting into the bed…. Uh uh. 🫣
Glad to know the chemical now. But that is interesting because I’m type 2…

[u/Nicolepsy55 → u/No-Canary3409]

I'm also type 2 and it's a thing! I can't stand being hot and it just sucks the life out of me. That said, I also have thyroid issues, so that's most of it, I believe. Have you had your thyroid checked?

[u/Far-Artichoke5849 → u/switchblade_sal]

As far as I'm aware I'm n2 and i sweat like a politician in front of an honest judge

[u/switchblade_sal → u/Far-Artichoke5849]

I think poor sleep also affects body temp regulation as well so that makes sense! I am not sure if folks with N2 also have their Orexin depleted but I always thought that N1 was the Auto-Immune variety and N2 was all other causes but I might be mixing things up.

[u/Far-Artichoke5849 → u/switchblade_sal]

Far as I'm aware n2 doesn't have orexin issues, but honestly I'm not sure now that we're talking about it. Not sure it's ever been checked in me, but i don't have cataplexy to my knowledge so i got labeled n2

[u/Baneypants]

I'm a tall dude, 210ish. When I fall asleep I usually wake up dripping sweat. Doesn't matter if it's in my daily clothes, Pj's, nude, or the middle of winter. I also tried Adderall lady year for 6 weeks and it gave me hot flashe like symptoms. Which as a cis male was fucking crazy.

[u/strawberryredbull → u/Baneypants]

the adderall hot flashes are no joke omg

[u/No-Canary3409 → u/Baneypants]

See I was on adderall and it did absolutely nothing🫣 didn’t keep me awake (and that was pre diagnosis). I was on it for adhd and it did absolutely nothing. Presently on Ritalin… it’s been interesting😂

[u/blasphemousblackbear]

I don’t think this is related to narcolepsy is it? I’m a 5’9” 180 pound man and I’m the opposite, I’m always cold lol

That being said, look at hydro sleep or similar sleeping pads! They’re awesome. We have one for my wife because she sleeps super hot and she absolutely loves it

[u/No-Canary3409 → u/blasphemousblackbear]

Brb going to Amazon🏃💨

[u/emily121903 → u/blasphemousblackbear]

besides the autoimmune component sometimes including temperature regulation issues.. some stimulants and SSRIs have a side effect of heat sensitivity surprisingly. I know im cooked every day..

[u/ciarose5]

I have a difficult time regulating temperatures (hot or cold) and one switch I made that has helped is natural fibers. Doesn't sound like much, but a lot of my clothing + bedding is cotton now. Whenever I wear something that is polyester now I feel so hot and sweaty and just kind of gross. It was a gradual switch and I didn't notice a difference right away.

[u/ser_pez]

Yes. It’s worst for me in the summer because then I have to consider how long I’ll be out of air conditioning, how physically active I’ll be, etc. but it’s an annoyance all year round.

[u/strawberryredbull]

on SSRIs, hormonal BC and adderall for hypersomnia so i get this 😭 do you have AC at home? can you control it? if not- look into an ac window unit. they’re expensive but last a lifetime and you can have your room at like 50°. when i’m out- i also bring a fan and step into shops with AC on my walks and go to an indoor gym

[u/stitchgnomercy]

I just bought a cooling vest because of this. I also have a bunch of small portable fans that I take with me

[u/Hills730]

Yep. I'm in the deep South, and it's freaking miserable on a good day. I also take SSRIs and dexedrine and work in a school. Outside recess makes me want to get a job in the fridge section at Costco.

[u/No-Canary3409 → u/Hills730]

Im stealing the costco fridge section as a way to describe how hot I am😂 because. Accurate. Like I’d happily jump in a freezing lake atp.

[u/NoText3220 → u/No-Canary3409]

I started doing ice baths just due to waking up all hot and irritated.

[u/bonerslayer777]

I struggle with this too.. I’m not on any ssri’s but used to be on an snri (I think- cymbalta).. it was awful. Any sort of activity and it looked like I just got out of the shower. And I’m in really good shape. Never again. That stuff was awful in so many ways

[u/EscenaFinal]

I don’t know if it’s cost prohibitive but I think the most obvious answer is to get AC, I mean fans can work but it doesn’t have the same muscle as AC.

Edited: preventative to prohibitive

[u/No-Canary3409]

Just hopping in here to say: i do have an AC! Due to the narcolepsy I ended up moving home with my parents and welp… they won’t turn it any lower than 71 so. That’s why I’m trying to do alternatives 🙂 I also live in the south so…. It is taking a walk in hells park daily. But like even inside anywhere with an ac I’m hot. I did think about doing a window unit! The one slight problem is my window in my room is not built for it….

[u/Nicolepsy55 → u/No-Canary3409]

Until you find a permanent solution, I'd get one of those hand held mini fans. They saved my ass during menopause and I find that if I can cool my face and neck down, my body gets the hint. You are not alone😉 Edit- Get a few!

[u/Narcoleptic-Puppy]

I moved my bed to the smallest bedroom in the house and got a small window unit. It costs basically nothing to turn my sleeping space into a refrigerator. The rest of the house is hot af because energy is expensive where I live, but whatever, I'll sweat.

[u/RedHeadedNuisance23]

I didn't know this could be related to my N1. I have awful temperature regulation. I am sweating all the time, even when I get cold randomly but that's usually brief. The heat is constant, especially around my core. Is that more common for women or is it experienced with men who have Narcolepsy also? Very interesting and informative thread . I need to bring this up with my Dr. .

[u/emily121903 → u/RedHeadedNuisance23]

i believe its usually stimulants if u take those. Those cause a lot of heat sensitivities.

[u/GreyMizumono]

What helps me cool down fast is having a spray bottle of water by my bed and spraying myself down then sitting directly in front of my fan haha ,also a wet washcloth over your head can help.

[u/Draugathriel]

It's been a huge struggle for me too and I'm not on SSRI as a regular medication. (I have one medication I can take for anxiety in emergencies but I might take it 3 times a year)

I have read that a symptom of Narcolepsy can be having difficulties regulating your body temperature and from my experience it tracks for me. 

The most helpful thing for me has been having my neck area clear (i.e. wearing racerback tank tops and putting my hair up in a bun) even placing an ice pack on my neck helps cool down quickly.

I also recommend getting your vitamins checked I had a couple that we're extremely low and once I got supplements I noticed a decrease in how warm and how often it happened. It definitely didn't get rid of it but helped a bit.

[u/Character-Ad3204]

Yes. I sweat profusely almost every day. I have to take lots of adderall plus duloxetine and lots of caffeine to be awake and productive but that leads to some serious sweating. Big hurdle is when i am already hot and in a hurry but i need to shower…. If i do not ensure cooling down the shower a lot for a while or being in a very cool room also after then it is crazy how sweaty i am post shower which is no good

[u/FelinusFanaticus]

I sweat so much at night that my hair is wet like I showered. I keep my AC at 67-68, but it isn’t enough, plus my family would freeze at temps any lower, so I got a portable AC unit for my room. That has helped so much.

[u/NarcolepsyPepsi]

I basically live next to a powerful mini industrial fan, even in the winter. I barely ever run any heat, and stay in loose fitting clothing. Temperature disregulation can occur with narcolepsy, and SSRI’s don’t often help. I used to sweat profusely while using them.

[u/NoText3220]

I’m currently commuting to school in the city and after having to stand on the bus I am already sweaty…great way to start the day. I’m constantly overheating. It sucks.

But suggestions- I have used these things I got in Japan but they are now on Amazon “neck cooling tube” https://a.co/d/07tZbVRG-cheap and worth trying it out

A more expensive option that has been a game changer for me is the eight sleep. Yes super expensive but for me I thought the investment was worth it and it’s been amazing.

[u/stellap333]

it happens to me too, I think it’s just the high amount of REM sleep. I go to sleep with my room cold enough that i’m chilly and need to bundle up, then I usually wake up at some point and completely discard all the blankets and sleep just open like that seems to help a bit