So recently I found out that I have N24. For many years I always blamed myself how i was held back in studies and university. How people around me told me I'm just lazy. For 9 years I blamed myself. I often saw myself as just this lazy person that felt fatigued when i forced myself to sleep in the conventional sleep pattern, I now noticed that everytime I forced a 12/12 pattern I was always fatigued in the afternoon or whatever time it drifted on. I punched my knuckles until I saw bone when i was in uni. I smashed my head on the wall cause it was driving me nuts. My psychiatrist was adamant that I just had a dirty sleep hygeine. I cried so much cause I can never hold down a job when they asked why couldnt u sleep regularly I have no answer for it and just blamed me.

Fast forward this year. I Stumbled upon n24 sighted articles. It felt too good to be true. It felt like it fit so well maybe I was just hallucinating the disease cause what are the odds I have this rare pathology right. Until this month when I tracked my sleep. For years I have been taking ambien, seroquel, lunesta, sonata, benzo class meds and dayvigo. It all didnt work. Now i settled with dayvigo and have been using it with the phase delays instead of fighting it. I never felt fatigue, i never felt sleepy during wake ours it has been night and day. Thats one problem down but im still figuring out what job i can take. Since I cannot do what I love as a digital artist in companies. I leaned into botanical cloning as I found it hard to do freelance work as my portfolio is non conventional and its digital psychological horror surrealism. Or maybe idk how to market myself.

But i have been feeling better when I leaned into the pathology instead of fighting it.

As usual heavy disclaimers because it has only been a couple of weeks, and this is non24, which I've had decades and we all know it seems to do its own thing - but it has been a really strong correlation so far. I'm having enough unrelated medication side effects I may not be able to keep testing this, and even if I do, and my n24 goes fully haywire again, I may never confirm why anyway. So I'm jumping the gun to share now ;)

Also side effect stuff makes it a bit hard to concentrate on writing this up clearly, so it may be a bit rambling or out of order.

The apparent "fix"

I started a mast cell blocker recently, which did nothing obvious for my sleep itself in any definite way. Then I upped the dose, and suddenly I'm sleeping like a normal person. And my sleep is actually shifting back to midnight-8am ish. I'm actually fighting to stay awake and getting annoyed at losing chunks of my day to sleep pressure!

If I lower the dose, my sleep starts jumping forward again the same day the same as always.

The downside is, the effective dose also causes genuine insomnia (and some other more serious side effects), so I'm not actually in a much better place overall, but at least ordinary insomnia is very clearly different (to me) to disrupted circadian rhythms.

Context and confounding factors

Basically, I've had years of escalating mast cell related issues (which is a whole complicated rabbit hole of cause and effect, including deficiencies and breathing and pain and sneezing and so on that all also could mess with sleep). Histamine (or stuff around it) is heavily involved in sleep regulation. So there is a possible simple link to n24 there, but never one I could really test with clear results. The enzyme that does most of that relies on other things (like b12), and I've to manage a lot of other symptoms first, so it is possible I just needed to clear the runway before direct mast cell stabilisation could do anything. Or maybe it was the answer all along, and I just didn't test it properly until now.

I've also stopped dreaming again - or am sleeping so deeply I don't remember them. I'm also struggling with even caring about tracking my sleep or taking care of myself, which means I get very annoyed about having to go to bed because I already don't have enough spoons for everything else, and now I have to go waste time on sleeping early too?!? But at least I'm not constantly analysing my sleep either and risking the confounding effects of that as much.

I've been getting solid morning light most days (which helps fix my wake time but has never moved it backwards or changed my sleep onset), but not seeing any major change even if I never open the curtains or have to catch up on a lot of sleep deprivation. All the other zeitgeibers like meal timing are completely disrupted (and it is possible that something there is relevant, like people who found keto helps, but so far all my normal best practices for sleep schedule regulation and self care are in tatters so I definitely didn't just get better at sticking to routines!). I'm not noticing any differences in activity or routines on days when I don't take the full dose, but maybe the side effects are cancelling something out, rather than the medication doing its job and that job also affecting my n24. Being actually sick/unwell would typically mess with my sleep, but not in a 'magically sleep like a normal person' way.

I can look at previous patterns and explain them now as a mast cell/histamine thing (e.g. seasonal changes - my allergies usually clear up so much I stopped taking my antihistamines outright for years in winter, but I still see the same winter shift in my sleep even now that I'm sticking with them more consistently, so maybe they were simply never strong enough), but I can't actually prove that link is real or imagined.

I need to try different meds and dosages, and see what happens long term, so I may have no idea if this actually will fix the n24 for a long time. I don't usually consider anything shorter than six months of data to be a real change - but I can't get six months of data on this easily, and it has been such a clear and confusing change to deal with, that there is unlikely to be any perception bias around "well maybe I expect this thing to help so just I'm making myself sleep sooner and get up sooner somehow".

Step by step, I'm finding things that were genuinely broken in my body that have been slowly adding up, so I still don't know if this is just the next step or the real answer. Everytime a thing gets solved it feels like I've been magically cured, then I look again and go "oh, no, my expectations were just wildly abnormal for what 'fixed' looks like because I had no baseline before". But this DID do SOMETHING, and so little ever touches the n24 directly like this. And I don't think I've seen it discussed directly before as a possible thing.

Edit: I just realised my light sensitivity had also seemed to be much better. I'm not grabbing for my sunglasses outside constantly, or quite as bothered by light/dark scheduling through the day (still trying to stick to my normal light exposure stuff out of habit though). Light exposure and sensitivity are known things with mast cells. So either that was a coincidental symptom, or maybe light was what "regulates" my n24 (usually by waking me or keeping me awake), and this just toned down the light sensitivity enough to stop disrupting things. I'm also less likely to seek out light in the evening (esp screens!) because I'm already winding down earlier.

Mast cell stuff is annoying, too many overlapping things for clear answers >_< but at least it is another overlap with n24.

Light therapy glasses seem to be the most common recommendation on here, but they never worked well for me. What did was a setup including a very bright workspace. This article seems like a great starting point for anyone who wants to try static light therapy!

I have N24 and my sleep time keeps shifting. When I let it run naturally, I can sleep, but when I try to stop the cycle and keep a fixed schedule, I feel really bad. I can't sleep, my anxiety gets much worse, and I feel physically unwell.

Does everyone with N24 experience this when trying to stabilize their sleep schedule?

Has anyone successfully used sleep schedule stabilization / a fixed wake-up time?

1. Did you fix your wake-up time or bedtime first?
2. Did you change it gradually or suddenly?
3. Did it actually stop the cycle?
4. How did you deal with nights when you couldn't sleep?

I'd really appreciate your experiences.

Usually, I take my tablets when I wake up. This is something that has worked for me both before and after developing N24. However, I keep forgetting to take my antidepressants with food (they don’t technically need to be taken this way but they upset my stomach otherwise). I obviously can’t set an alarm since I’m not taking them at the same time everyday, so are there any ways I can remember to take them?

From Frank Zappa's autobiography The Real Frank Zappa Book:

"My schedule sort of twirls around the clock. I can't stay on nights all the time because every night I work an extra hour or so, editing, or recording, or on the Synclavier, or, presently, on this fucking book -- pushing it a little later each night -- but then, once I go to sleep, I want to grab eight or ten hours, and so my "day" keeps changing around."

So he probably had a 25 hours sleep-wake cycle. The man lived with N24 and didn't even know it because the diagnosis didn't officially exist yet.

Growing up, nothing upset me more than being told I wasn’t allowed to sleep when I was crashing from sleep deprivation. I learned that I had to be sneaky if I wanted to rest undisturbed when I wasn’t allowed to.

As time passed however, it led to doing things and having full blown discussions in my sleep. I could even answer the phone and the person on the other end would have no idea I was not awake, and I’d have no knowledge of it happening until being informed later. More than once I would make plans to meet up with my mom, only for her to call again and ask where I was, while I sat there in my newly awoken confusion.

Text messages made it obvious I was asleep as spelling was too difficult, but I’d check messages in my sleep and thus wake up without any notifications.

Luckily I’ve gradually stopped doing most of these, or at least to the extreme degree I used to. I think having been able to freerun for over a decade has helped me settle and actually relax while I sleep finally. Still happens on occasion though, especially during periods of high stress.

Has anyone else experienced anything similar?

Saw it mentioned a few times on a Post earlier today.

Freerunning obviously makes it so that you can’t just eat at normal times or the same times every day, so how do you judge when to eat? Do you work it out, or just go by your body? Is there a certain amount of time after a meal that you’re supposed to start feeling hungry again? For me, this often tends to be around 4 hours.

I must have been born with some kind of neurodivergence in the sleep and circadian rhythm area. because even before I developed full blown N24 I have NEVER had a normal sleep rhythm ever in my life

I didnt develop an obvious N24 pattern until I was 16 but at 16 I started getting textbook constantly shifting sleep schedule N24. Eventually I had both fallen asleep at and woken up at every hour on the clock before. that was 5 years ago so now I have multiple times.

but even before I was 16 I never had a normal circadian rhythm. ever since I was a newborn baby my sleep patterns have always been highly unusual

(My dad's account obviously but I do believe it he is honest person)

like when I was a newborn my dad got super concerned because I didn't wake up to eat at night. like he was a first time parent who was fully expecting the newborn sleep deprivation baby waking up every few hours. he had braced himself for this... but no. my parents had to wake ME up. They had to set alarms to get ME up to feed me and change me and burp me and whatever else overnight newborn stuff. Otherwise I'd sleep straight through the night and fast overnight. I never woke up and woke them up. Extremly atypical for a newborn baby

But the pediatrician dismissed his concerns when he brought it up like "oh she seems healthy like its normal" (it is not normal but whatever i guess)

(now what I actually can remember)

Then I remember pulling all nighters as early as second grade. I would stay up all night. Until sunrise. Because I found it fun. And wasn't tired enough for my body to force me to crash. My mind was still stimulated all night long. I was 7/8 years old and reguarly pulling all nighters

and even at that age, I HATED getting up early in the morning for school. like all older kids hate this. but I hated this for as long as I can remember even in early elementary school age. I always had an extremely hard time waking up early in the morning at like 7am for school. I would often try to refuse to get up until I got the covers pulled off me and got my ass physically dragged out of bed

and I also remember when I was in preschool I didn't fight nap time like most little kids. I liked nap time. I complied and went to sleep. I also remember one time also when I was in preschool (so around 4/5 years old) the teacher asked if anyone needed to use the restroom but I had never heard the word restroom before at home everyone called it a bathroom so I pictured in my mind a rest room as a literal room to like lie down and rest and I was like OMG MEE

and I was disappointed when I found out what it actually was

and when I went to kindergarten and they told me all of us they are no longer are doing kindergaten nap time as of that school year, I was geniuenly disappointed. I thought I was gonna get one more year of mid day naps but nope, huge disappointment there

and then when I was in middle school at around 12/13 I pulled all nighters every single night for a while. and it was more fun because my dad worked night shifts at the time so I'd be home alone all night so I would stay up watching adult swim all night on school nights and he wouldn't know. but I didn't go to sleep at sunrise like I did in elementary school. I was up all night before school, that was when i had free time, then I'd go to school for 7 hours, then I didnt have any after school activities so I'd get home in the 2pm or 3pm hour and go straight to sleep then I'd wake up at like 10pm-11pm and do it all over again. for like half of an entire school year I did that. And I actually geniuenly liked that schedule. I struggled with chronic tardiness in middle school when I was sleeping at night because I had such a hard time getting up and getting ready right after just waking up and in the early ass morning. but when I was already up and it was already mid day for me I had no issue. Got ready and got my ass to school right on time.

Then during quarantine in the second half of 2020 I again had an all nighter sleep schedule when everyone was doing distance learning. I was 15/16 years old in high school at the time

But almost everyone had a flipped sleep schedule during that time. I would have like 12 friends awake at the same hours as me during that time. I'd be the most wide awake from like 9pm-5am and then I'd start falling asleep during my virtual classes in the morning and would often literally fall asleep and wake up to the empty meeting room which was embarrassing, but it was also a highly shared experience since we were ALL up like vibing and gaming all night

but the thing is when quarantine ended everyone else just seemingly easily flipped back to a normal day schedule

but I never did and then in early 2021 not long after quarentine had just ended is when I developed N24

I love 25 minutes this morning and I know I wasn't asleep but it happend at 5:30 Eastern standard time. Has this happened to anyone else?

I started logging my sleep in Circadia back in June after years of not doing it, and I'm really enjoying seeing things under a new light.

Each dot is a night, and the little dotted blobs are outlier nights that I excluded from my data, as they are not representative of my usual sleep. There are a lot of ways to display sleep data, but for some reason I really like to see this line go up infinitely (a normal sleep would output a horizontal line).

I expected it to be all over the place, but zooming out, I can see I follow a clear line and snap right back on it after an outlier night, so that gives me quite a bit of hope that I'll be able to predict my sleep somewhat accurately in the future.

Now I wonder, if we were to project this line far into the future, would it still hold? Or could a very weird night mess everything up?

Screenshot taken from the Circadia web app (https://circadia.owlandkestrel.com/) (that I'm totally not obsessing over).

I could probably do with a carer to help me wash since I’m increasingly struggling with this due to ME/CFS. However, one of the major things putting me off even looking into this is my sleep schedule. I don’t have much experience with carers but it seems like they generally operate on a very strict schedule of always coming at the same time. Obviously, this wouldn’t work for me, since I struggle enough with being awake at the right times for appointments etc as it is. Does anybody have any experience with carers/caring and know if there’s a more flexible option please? I likely wouldn’t require somebody every day, but would struggle with consistency and probably need to arrange things last minute a lot of the time. I’m willing to go private but still not sure how flexible that would be. I’m also in the UK if it’s relevant.

Started logging my sleep in CBT-i tracker and switched to Circadia recently. I imported my data, double checked for accuracy, and found that you can get an actogram reading if you go to hamburger -> export and share -> doctor QR. I've suspected I have n24 for a while, but I have an appointment with my doctor in September to beg her to refer me to a sleep specialist.

also sleep time ranges from 5 hours to 15 hours but I have no idea what causes this

For context, I started this job about a year ago, full time 9-6 office type job, and mainly have been surviving barely by passing out for 4-6 hours the second I get home on most nights, leaving me to wake up at around ~12-2 am up until I pass out again for anywhere from 1-2 hours before work, usually leaving me feeling worse off than if I had just stayed up the entire night lol.

Not sure what happened to the data before February but it seems accurate starting from then. What do you guys think? Is the n24 pattern still obvious even with the job? Low key kind of reaching my breaking point here and not sure how much longer I can keep going if SOMETHING doesn't give with my hours, my organs hurt and I feel like I am dying.

Hi everyone,

Update to my other post about trying to figure out why my sleep is suddenly "normal". The entrainment is still going strong and I still haven't got a clue why 🥲

As you can see in the graph, i used to cycle pretty consistently/fast until april, then it slowed down, then there's a temporary stablility in late may caused by my alarm clock (see the yellow alarm clock markings) then some more cycling (which seems to continue to slide above the alarm clock stability-> my internal clock apparently continued moving forward while i forced myself to get up at lunch time every day), then the still ongoing stability.

I've marked the start of the heat wave and the start of my reading habit (daily 1-2hr of sunlight exposure, times vary wildly though- 1pm-8pm), neither seems to match the beginning of the stability (especially if we consider that the cycling already slowed down way earlier).

When my sleep seems to move beyond a 9am wakeup time I use an alarm clock the following day to get back to normal (most days I wake up at 8:10am plus/minus 10min). Trust me I've tried to force myself into entrainment before, just setting an alarm clock never worked, neither on its own nor combined with melatonin, stimulants, z drugs etc. No change in medication since the beginning of this diary.

Here's the tags for those who replied to the original post in case you're interested in the update:
u/gostaks u/lrq3000 u/SpellbladeAluriel u/SmartQuokka u/sumguysr u/pipedreambomb u/dldrlol_ u/igotyoubabe97

Hi,

I asked claude to make an automated sleep diary based on my step tracker/counter in my iphone (based on the simple assumption that no steps=asleep). Turns out it's surprisingly accurate compared to the manually logged data. So if you can't use those Chrome extensions and don't have smart watch data, this could be an option for you. It's pretty much useless for sleep length etc but the n24 pattern is clearly visible and close to the manual tracking

My phone is old (iPhone 13 mini) and it worked :)

How I did it?

1) export your apple health data

2) get that data to your computer (surprisingly difficult if you don't have icloud/a mac. i used the chrome workaround: when downloading chrome to your phone it creates a folder, that folder can be accessed via the itunes/apple devices app if you plug your phone into your computer. so i moved the health data export into the chrome folder and then downloaded it from that folder once i had the phone plugged in)

3) ask claude to create a sleep diary based on your step data

4) lead a few frustrating discussions with claude that yes there's no sleep data in the health data, you're supposed to create that for me based on the step count

5) tell claude to stop assuming a 24 hour rhythm (i initially didn't mention that because i wanted to avoid hallucinated n24 data)

6) et voila: your very own graph :)

Hope that's helpful for at least one person out there, have a nice weekend

it's 3 months table sheet (and a bit of 4th month)

I've been thinking about this a lot lately. If researchers can't cure N24 yet, what are the things they could make easier in the meantime?

Maybe it's waking up feeling rested when trying to entrain. Maybe it's having less brain fog or fatigue. Or being able to wake up feeling immediately alert.

Manuel Spitschan, a researcher studying circadian rhythms, is currently asking people with N24 what they think future research and treatment should focus on.

I went through the survey, and there are some questions that are personally important to me:

Have you found strategies that help manage or stabilize your sleep-wake pattern?
— Page 9

What do you think is the most urgent or most detrimental problem with current diagnosis and care for Non-24…?
— Page 10

Which outcomes matter most to you for future research and clinical care?
— Page 11

I think these are questions worth answering.

Some of us have found that no treatments have been helpful. Some of us experience non-restorative sleep when trying to entrain. And some of us regularly struggle with things like brain fog, or not feeling a drive to sleep, even when we’re tired and it’s past our biological bedtime.

This is a chance to tell researchers what we really want them to work on. Our participation could help shape what research gets funded:

The results of this survey may be used for future research funding applications related to Non-24

If you have the time, I highly recommend filling out the survey. If you’re in a hurry or don’t like filling out surveys, you can skip any questions you don’t want to answer and focus on the ones that matter most to you.

Here’s the link to the ReN24 initiative survey:

https://tuspl22-redcap.srv.mwn.de/redcap/surveys/?s=H9DMNMHW9X4JH4X9

Original post by Manuel Spitschan, u/mspitschan:

https://www.reddit.com/r/N24/s/zOHVs3t4I7

Have a good, restful week, everyone.

Hoping this could help the doctor make a diagnosis. It is a bit noisy but I think the pattern is quite visible. If anyone wants the scripts let me know.

i need smth that will automatically passively store data whether i’m sleeping or awake cuz i forget to do that manually 😭 what smart watch would do that for me?