#n24swd

[teleportzz]

pretty unlikely but are there any other autistic people with non-24 sleep-wake disorder out there who experience this odd mix of distress and jubilation when your sleep schedule realigns with polite society? on one hand, i'm happy that i get like a week or so of actually feeling well-rested and awake at school and like i'm part of the world and society around me, but on the other hand, i get kind of used to being awake at 3am when everyone else is asleep and the world is quiet, so i get very distressed and get sensory overload more easily because i'm reliant on being awake in the middle of the night to help me regulate

taking a shot in the dark here, i know, but if anyone else knows what i'm talking about i'd love to connect. maybe people with other circadian rhythm or sleep disorders like insomnia might also relate?

[thomas-jeffferson]

anyone else with circadian rhythm sleep disorders get so insanely mad at people when they tell you to "fix your sleep schedule" or "oversleeping isnt healthy" or to "go to bed"

shut up. literally shut the fuck up.

m sorry but I have been dealing with this my whole life and this is how my body functions. YOU'RE body actually fits a 24 hour day cycle. MINE DOESN'T.

i cant fucking "fix my sleep schedule" because my body doesnt recognize that im on a 24 hour cycle dumbass. I cant make myself get tired and i cant make myself get out of bed.

I've missed my drivers test 3 times bc of my sleep issues and i keep having to reschedule. I don'y have a single memory of having a consistent sleep schedule ever.

I HAVE to "over" sleep for my body to be able to function. it's how i can get out of bed at all. before I homeschooled i was staying up for 24-30 hours once or twice a week just to not miss school.

please just stop telling people how to fix their disabilities when they have probably tried every solution or remark you have offered them. Its not the goddamn caffeine sharon.

[neopronouns]

flag id: the leftmost quarter of the left flag has 4 stripes, which are golden yellow, sky blue, faded indigo, and dark blue. the second quarter has those stripes shifted down by half a stripe, with a small section of dark blue at the top. the third quarter has them shifted down again, making the top dark blue section a full stripe. the final quarter is shifted down again, with a small section of faded indigo at the top. the right flag is the same, but each shift down is a full stripe length rather than half of one. end id.

banner id: a 1500x150 teal banner with the words ‘please read my dni before interacting’ in large white text in the center. end id.

two versions of a non-24-hour sleep-wake disorder (n24swd/n24) flag for myself!

both flags use yellow and sky blue for being awake and purple and dark blue for being asleep, with both flags shifting those colors 'forward' several times to represent one's circadian rhythm being out of alignment with the typical 24-hour cycle.

tags: @mad-pride | dni link

[mayawakening]

Well, it's official, I'm a unicorn. According to my very baffled sleep doctor, I am a sighted person with Non 24 Hour Sleep-Wake Disorder.

Anyone else in this very small house? 😭

(Non 24 affects only 0.03% of the world and the vast majority of those people are blind)

[abyssbirds]

The fact that most of the tags under n24 have nothing to do with the disorder and that there's only a handful of posts under every single tag for it sure FEELS like ableism even though it might not be. But I have the time to talk about it so I might as well spread visibility.

(Info under read more)

N24, Non-24, or Non-24 Sleep-Wake Disorder, is a circadian rhythm disorder where your body doesn't run on a (roughly) 24-hour cycle like most people/people without the disorder itself. For example, my days run roughly 18-19 hours instead of a typical 16. My sleep gets later and later and later. I've tried melatonin, tried resetting my sleep schedule by staying up for >24 hours until a "normal" time for bed, and tried keeping ambient noise on like music or nature sounds. I've tried blue light filters. My days are just 26-27 hours instead of a normal 24, though every person with N24 is different.

It's primarily diagnosed in Blind patients, since the cause among Blind people with the disorder seems to be that not being able to see the transition from day to night makes their bodies not produce the proper sleep hormones at the right time.

Among sighted people, the cause seems to be unknown (last time I checked; just one person with the disorder should not be your only source of information!) and, since N24 among sighted people is more rare and less lucrative, it's an orphan disorder. There's not much research into how to help us sighted people with N24 because treatment is often pricey or not an actual solution, or it is aimed directly towards helping Blind people with N24.

As far as I know, there's apparently an implantable device in development. The main suggestions I see are training via sun lamps and melatonin or just trying to get on sleeping pills by lying about insomnia. There is a pill that can be taken, but if you live in the US, it is extremely expensive. So, essentially, this orphan disorder is overlooked and misdiagnosed, and those of us with it have to hope that one of the coin-toss methods of treating N24 works.

N24, even on its own, can be a very disabling disorder. You're either too-sleep deprived to do the things during the day you need to or are busy being asleep because the human body needs rest at some point. Socialization gets very difficult when your circadian rhythm is nocturnal for a couple of weeks. It's an isolating experience. It also makes it harder for people to work and make themselves money. I don't even know if N24 is something that can apply to an application for disability, though given it's not well-known, I doubt it is.

I'm not used to making informative posts like this, so I don't know how to end it, but please do some research into N24 on your own time--I am by no means a medical professional and my anecdotal explanation may contain errors. I just want people to know we exist.

[rotblume]

24. November is Non24 Awareness Day

Non24 is a chronic neurological 'circadian rhythm' disorder (like Advanced, Delayed and Irregular Sleep) - primarily affecting the sleep rhythm, but also many other bodily functions, which are all inter-connected, such as appetite and digestion, temperature and immune system, energy and concentration or mood & mental health.

It is a very rare disease and therefore not much is known about it. As a matter of fact, and quite unfortunately, many of the medical professionals still believe it only affects blind people without light perception as the sun is the most important 'zeitgeber', when all evidence proves sighted people can suffer from it as well.

It can also be easily misdiagnosed (e.g. idiopathic insomnia/ hypersomnia or depression etc.), if there is a diagnosis at all and not only prejudiced social judgement, so that you don't even get to a sleep expert. It must be assumed that there is a high number of undetected or unreported cases, especially among sighted people.

There are very few and very limited treatment options. Those available to me, I have tried without success.

At best, they don't really work, at worst, they make me feel worse. Personally, and like most others I know of thanks to our facebook support group, I feel most healthy when free-running (meaning I follow my body's inherent rhythm and sleep when I'm tired), instead of forcing myself to day-walk and try to entrain to a more normal (= the modern average) sleep pattern (sleeping only at night, staying awake throughout the daytimes), which at some point is simply impossible for me either way - after some time of (good or any at all) sleep deprivation, my body crashes due to the lack of sleep.

I have Sighted Non24. My day is about 25 hours long.

This means that instead of having stable wake and sleep times (e.g. a 24 hour day with 8 hours of sleep between 22 and 6 o'clock and 16 hours spent awake), one day I become tired at 22 o'clock, the next at 23, the day after that at 24. If I have to get up at a certain point in time for work or university, it ultimately results in less and less sleep.

I am unable to sleep when my body is not sleepy, I literally just roll around in bed doing nothing, tired but awake. Even after a week or more of this, with the hours of missed sleep adding up, my exhaustion does not put me to sleep.

When it comes to the point where I become sleepy just as I have to get up, for a few days I might even be able to "just work through" my night, until in the end the sleep deprivation - basically the complete lack of healthy rest - literally forces my body to shut down and I fall asleep in my seat during lectures or standing in the bus.

It is an invisible disability. It's well on its way to completely destroy my life, because I am unable to even finish the education needed for jobs I could do at home on my own time.

It was a war, battle after battle to even get this diagnosis. I am still fighting to get actual disability accomoditions.

[vodid]

non24 sleep-wake disorder is going from 26 hour long days to 32 in a matter of two days bc ur body really hates being awake during the day. and not feel tired.

[crowdearest]

I was so upset earlier bc I had an appointment about my sleep study and he said "oh you have sleep apnea, if you want a cpap let us know, and if not bye" and I was upset because I was seeing him about non24. And I was crying about that and then the HETLIOZ PEOPLE CALLED ME AND SAID "HI WAITING ON INSURANCE, HERES A FREE 30 DAY SUPPLY THO" AND I WAS NO LONGER UPSET

[whoselabelisitanyway]

Hello i couldn't help but notice that u offered urself up as a resource for info abt N24 (sorry if i got that wrong, feel free to ignore this.) So as someone who very recently found out abt it and also probably has it, do u have any resources? Links or articles or anything for me to look at? Anything you could/want to share abt it??

Hey! Yes, I'm happy to write about my experience with N24. (It's not fun, but it's reality for many people.) The sad thing is that I don't actually have many online resources as far as articles and such. A quick internet search showed me Non-24-Hour Sleep Wake Disorder: Definition and Causes | Sleep Foundation which seemed to be a good overview (more articles linked at the bottom of the page). It's very clear that there hasn't been enough research done in a practical sense, though. Treatment options are few, and there aren't any that are at all flexible. Which, I'll just say it, sucks.

For me personally, my N24 is pretty severe, with my days lasting about 30 hours or such, so that I'm awake for something like 20 hours at a time. None of the treatment options presented to me (melatonin and/or light therapy) were effective (I have unusual environmental factors against me, though). That doesn't mean you shouldn't try them, IMHO - but I would caution you against accepting whatever sedatives doctors are handing out these days. If that's their initial reaction/treatment advise, ask them if that medication is approved and tested effective for long term usage. (It won't be - if I'm wrong, lmk, because I'd like to be wrong.)

Lastly, I'll tell you a bit about how I got my diagnosis. The biggest factor was a comprehensive sleep diary. Sometimes they'll ask you to do a sleep study as well, to rule out other sleep disorders. A sleep diary is crucial in helping the specialist evaluate the progressive time changes in your sleep patterns. I recommend getting a low-cost sports watch (with a small profile so it's comfortable to sleep in) if you don't already have one. That was a huge help to me when I was documenting my sleep patterns.

I hope that helps! I wish I could give you better news, but I do believe it's preferable to know what you're dealing with than to not - even if it's not something with an easy fix. Let me know if you have any other questions - I am not a sleep doctor or physician, but I can speak to the realities of living with N24. If I can help others at all, I like to. Good luck!

[crowdearest]

When the phone starts ringing at noon just as you get settled in to go to bed

[floortile34]

ugh annoying having like a 26 hour circadian rhythm

[teleportzz]

fucking bullshit that i got diagnosed with "sometimes-lives-like-a-vampire" disease and it isn't even fun. it's actually kind of a nightmare

[thomas-jeffferson]

having a fucked up circadian rhythm sucks because if im conforming to a "normal" sleep schedule i feel like shit but if im freerunning i feel amazing but extremely isolated because i cant talk to any of my friends except for short windows of time.

[vodid]

ah yes, another case of labeling something perfectly normal a "disorder" because the Super Perfect Normal world imposes itself upon everyone like a one size fits all and tries to erase everything else. there is a REASON ppl with dspd get sleepy during the day 💀

and you know all those articles that say sleeping late can cause health issues in the future? like diabetes, obesity, heart issues, etc.? IT'S NOT BECAUSE YOU HAVE DSPD. THOSE ARTICLES ARE NOT FOR YOU.* those articles are for people with "NORMAL" circadian rhythms, because the article is assuming you're intentionally keeping yourself up and waking up early instead of going to bed when you should. but with dspd, your bedtime and wake-time are just naturally later!! *these do not apply to you if you're getting good sleep!! because these risks are byproducts of chronic sleep deprivation!!

there are no health risks for dspd, afaik, unless you are trying to conform to a "normal" circadian rhythm. do not be fooled by anything saying "night owl" because chances are, they mean people who stay up late and wake early — NOT dspd. and if you look into it, the studies are held on a NORMAL sleep schedule (which, if the ppl participating actually have dspd, then congrats, your data is skewed. of course they're gonna have health issues; one study had them starving overnight and waking up early 🥴)

i very very much wish i knew of dspd BEFORE lockdown, before i started self treating via chronotherapy, thinking i had insomnia/something wrong with me BECAUSE OF THESE ARTICLES. and attempting to treat it threw me right into n24swd and now i have an actual CRD (maybe i was predisposed for it but still. woulda been nice to know ppl just. have different chronotypes... that i could've stayed with dspd and been perfectly fine)

this is just me ranting at this point but it's so annoying to me that schools knowingly sleep deprive kids but they're fine messing with their BIOLOGICAL CLOCKS as some sort of fucked "preparing you for the real world" or "eventually it'll stick" shit. that is NOT how it works and there's a reason i was not able to perform well in school; why high school were my worst years. I WAS FUCKING TIRED

and now i'm disabled! so yes, pls understand the difference between having a different chronotype and staying up late. understand your body's cues and go to bed when you're supposed to, whether that be advanced, "normal" or delayed. sleep is important.

i fucking hate

this is literally just labeling someone’s natural circadian rhythms as disordered.

“may fall asleep later than intended and feel sleepy during the day”

WHAT IF

hear me out

WHAT IF

WE JUST LET PPL LIKE ME W NATURALLY “DELAYED” CIRCADIAN RHYTHMS SLEEP WHEN THEY NATURALLY WANT TO AND STOP FORCING THEM TO CONFORM TO A BULLSHIT CAPITALISM-FUELED NIGHTMARE SCHEDULE!

like!!!!!!!!! WHY is this a DISORDER!!!

i remember during lockdown when i had nothing to do and i just started naturally letting my sleep return to what felt most natural, and that happened to be around 3am-10am ish. and i felt fucking fantastic!!!! i felt the best i’d ever felt!!!!!!

and now i’m back to bullshit trying to knock myself out using nyquil or weed or benadryl so i can wake up at 8am and get to work at 9am which is apparently “late” and i feel like shit all day and can never find the motivation to work on my books!!! during the pandemic i wrote an entire fucking book!!! usually between the hours of 11pm and 3am!!!! and now when i start to feel that itch to write i have to ignore it bc i have to go to bed at a time that feels so unnatural!!!!! fuck!!!!!!!!

i hate everything!!!!!!!!

[disabledpkmntrainers]

Adaman is autistic with OCD traits and has non-24-hour sleep-wake disorder

Headcanon by anonymous

[Image description needed]

[medicalgadget]

Evaluation of circadian phenotypes utilizing fibroblasts from patients with circadian rhythm sleep disorders

Translational Psychiatry - Evaluation of circadian phenotypes utilizing fibroblasts from patients with circadian rhythm sleep disorders

Abstract

We evaluated the circadian phenotypes of patients with delayed sleep–wake phase disorder (DSWPD) and non-24-hour sleep–wake rhythm disorder (N24SWD), two different circadian rhythm sleep disorders (CRSDs) by measuring clock gene expression rhythms in fibroblast cells derived from individual patients. Bmal1-luciferase (Bmal1-luc) expression rhythms were measured in the primary fibroblast cells derived from skin biopsy samples of patients with DSWPD and N24SWD, as well as control subjects. The period length of the Bmal1-luc rhythm (in vitro period) was distributed normally and was 22.80±0.47 (mean±s.d.) h in control-derived fibroblasts. The in vitro periods in DSWPD-derived fibroblasts and N24SWD-derived fibroblasts were 22.67±0.67 h and 23.18±0.70 h, respectively. The N24SWD group showed a significantly longer in vitro period than did the control or DSWPD group. Furthermore, in vitro period was associated with response to chronotherapy in the N24SWD group. Longer in vitro periods were observed in the non-responders (mean±s.d.: 23.59±0.89 h) compared with the responders (mean±s.d.: 22.97±0.47 h) in the N24SWD group. Our results indicate that prolonged circadian periods contribute to the onset and poor treatment outcome of N24SWD. In vitro rhythm assays could be useful for predicting circadian phenotypes and clinical prognosis in patients with CRSDs.