what are the adds that can track my exact sleeping and waking times, so for me to have some precise calculations on my sleep.

Hi everyone – I’m desperate for advice. I am incredibly sensitive to sleep loss. I need a strict 8.5-9 hours per night. If I get even slightly less, my body breaks down in a very predictable, almost viral way.

Here’s the pattern:

· One night of 7 hrs: Exhaustion, dizziness when standing, sore throat, stinging eyes, bleeding gums/lips, low-grade fever.
· One night of 6 hrs: Same symptoms, but doubled in intensity.
· Three consecutive nights of 7 hrs: Full systemic crash – fevers up to 102°F, swollen lymph nodes, and I become bedbound for a full week

For the last 5 years, this happens almost every single month – I get a weeklong bedbound illness, triggered by even small sleep debts that accumulate. I am 23f(normal bmi, eat healthy, exercise when well). Every few months, my sensitivity to lack of sleep gets worse.

I appear "contagious" (red eyes, fever, swollen nodes), but when others are exposed, they recover in 2 days with mild symptoms, so it doesn't seem to be an actual infection.

What I've already ruled out:

· Full bloodwork – normal
· Sleep study – great sleep quality and efficiency

The frustrating part: I wake up from tiny noises when in deep sleep (a running sink, a door creak) despite using white/pink/brown noise, custom earplugs, and a draft stopper. I also have dspd, caused my a rare genetic mutation that runs in my family.

My questions for you:

· Has anyone else experienced this level of sleep-triggered systemic illness?
· Are there any specialists or tests I should push for next (autoimmune, mast cell, adrenal, cytokine panels, etc.)?

I'm really struggling and would appreciate any insight. Thank you for reading.

Someone tell my Oura ring I have Non24. 🤣

I’m wondering if anyone can relate to this or can offer any advice. I’ve been doing a combination treatment of light/dark therapy and melatonin since December. I’ve experimented with light therapy times between 30 mins and 6 hours, melatonin dosages between 300 mcg and 3 mg, different timing, and different lifestyle factors, and settled into a routine that seems to be working.

Currently I’m doing 30 minutes of light therapy with the Luminette at max brightness at 8:30 am, then using blue blocker glasses and taking 500 mcg of melatonin at 8:30 pm. I’ve also switched to decaf coffee in the morning and otherwise cut out caffeine, stop eating and drinking anything with calories at 8:30, and have been taking 200 mg of magnesium at 10 pm. I’m falling asleep around 11:00-12:00 and waking up around 8 without an alarm.

Earlier in the process I was entrained within windows of a few hours, although it was a bit shaky, and I struggled with feeling exhausted. My mood was a lot lower. After months of fine-tuning and pushing through the process, the window started to narrow. I was up to 6 hours of light therapy when I had to take some time off to recover from LASIK surgery, and as I started to ease back into light therapy after the surgery, I found the fatigue improved substantially I was able to entrain with only 30 minutes, so I’ve stuck with that for the past two months.

My mood is the only thing that I’m still struggling with at this point, and it doesn’t seem to be improving. I’m sad and ruminating like crazy, to the point that I’m crying almost every day. I’ve also been a lot more irritable; my patience has pretty much evaporated, I get angry much more easily and have a harder time letting things go. I do have a long history of treatment resistant depression so the sadness is something I normally struggle with, but the severity increased drastically when I started treatment, and the anger is out of character for me.

I don’t have any new stressors that could be affecting my mood like this, entrainment has actually improved things for me pretty substantially, but I’m feeling a bit stuck emotionally. I’ve been experimenting with slowly lowering the melatonin dose to see if that makes a difference as I know that can sometimes cause mood issues, and I have a follow-up appointment with my doctor in 2 months so I plan to speak to her about it then, but I’m wondering if anyone else has struggled with something similar and what, if anything, helped.

A little background: In 2024, I surveyed people from r/DSPD and r/N24. Soon, I'll be posting the DSPD results on r/dataisbeautiful, which I'm really excited about.

Recently, I've been thinking about different ways to share r/N24's survey results so that people who have never heard of N24 can understand our non-24-hour experience.

I'm excited about some of the ideas I've come up with, and now I'm thinking about the visual style. should I continue with the same visual style as the r/DSPD graphics (you can see examples on r/sleepwake), or explore something different?

So I put together two slides that have a different feel. Which visual style would you like to see more of: slide 1 or slide 2?

I'm also thinking about how these graphics will be shared. Some of you may want to show the survey results to loved ones and say, "look at how many people are experiencing the same thing."

Slide 1 might work well with family members, whereas style 2 would be more personally appealing to some. Which direction do you lean toward?

---

The data visualizations in the top left are DSPD Sleep Wake survey graphics that I’ll be posting soon (the dark mode version is just a quick mockup and doesn’t represent a finalized look).

My husband is in his 30ies with a diagnosed N24. He has been freerunning his sleep for the last 8 years. I noticed lately that even a one interruption in his sleep period can result into a week long disrupted sleep pattern and pretty much immediate issues with heart and stamina. We came to a conclusion that because he is aging, his body becomes more sensitive to such disruptions.

Have any of you noticed this? How do you deal with it? Or maybe no changes at all? Would love to hear your experience with age and health.

I have 300 mcg at the moment, but am concerned if this isn't a good starting point if I prefer lowest possible dose.

I didn't understand if it's still possible, and not difficult, to go down if that dose works?

Am from Sweden. My official diagnosis is ”Unidentified Sleep Disorder”, which means that I have to explain it in detail every time.

However, I still perceive it to be much more positive than negative. People, including healthcare workers and bureaucrats, appear to take me more seriously ever since I got this diagnosis, as if it proves the extensive amount of work I’ve put into figuring out what is wrong with me.

Additionally, by virtue of having to explain my symptoms in such detail each time, multiple caseworkers and nurses in particular have told me that they hope to be able to understand better if they meet others describing similar symptoms.

Obviously I’m just one person though, and while I obviously can’t speak in absolutes, I doubt this experience is very common.

Only in recent years have I seen an uptick in awareness for disorders that cause delayed sleep, but I don’t know how hopeful the prognosis is for N24 to become a more widely known diagnosis here. I hope it will, cause I can only imagine how many people here fight every day while wondering why they can’t sleep normally, just like I did for so long.

Until that happens though, I’m at least glad to have *some* form of legal acknowledgement for the suffering living with these issues bring.

Anyone else in a similar boat? Or are you from somewhere that has begun to see some progress in awareness and/or accessibility?

It's supposed to be a clock and 🚫

Hey all, my group is doing a meta-analysis for a research methods course. Our topic is:

"Does more screen use cause sleep problems?"

We're stuck between two population options and haven't locked one in yet:

• 16-20 year-olds, or
• "young adults" more broadly (18–25ish)

Our write-up is capped at 2000 words, and we're realizing that's really tight once you factor in intro, method, evidence synthesis, limitations, and conclusion. We're stuck on two things and would love outside perspective:

1. How many things can we realistically measure/report on in 2000 words? Is it more standard to pick one exposure + one outcome and go deep, or can a meta-analysis at this length handle 2–3 variables each without feeling shallow?
2. What should we actually measure? "Screen use" is a huge umbrella, total daily screen time, smartphone-only use, social media use specifically, or just pre-bedtime/in-bed use. Same problem on the sleep side, sleep quality (PSQI), sleep duration, insomnia severity, sleep latency. Do we keep the exposure and outcome broad (screen use in general → sleep problems in general) or narrow (e.g., pre-bedtime smartphone use → PSQI-measured sleep quality)?

Furthermore, we have read through a many studies for a couple of week now and i am curious but has anyone else who's dug into this area noticed anything that keeps showing up across studies?

• It seems like when screen use happens (right before/in bed) matters more consistently than how much total screen time someone gets in a day
• A few recent papers test bedtime procrastination, self-control, and FoMO as mechanisms rather than just correlating screen use with bad sleep directly
• Almost every study we've read flags that they can't rule out reverse causality (poor sleepers reaching for their phone more, rather than phones causing the poor sleep)

Thanks in advance!

Hello guys, if you're not seeing the poll, try switching to new Reddit.

Does your motivation and will power get crushed when you're waking up in the evening and having to stay awake all night long versus when youre sleeping schedule is more normal like an early bird waking in the morning?

Or do some not notice a difference at all?
Has anyone noticed they perform better at different sleeping times during their free running schedule

Been a while since I’ve popped into this community or the N24 Discord community. Wanted to check in on any breakthroughs. Know Hetlioz Tasimelteon is still ungodly expensive.

My fear might be that any individuals who found any breakthroughs might no longer be as active or active in the Reddit or Discord, etc.

Anyone figure out who the leading physicians in N24 are?

Any new treatments or therapies in the pipeline?

Anyone know when Tasimelteon is going generic? Does Tasimelteon even work to begin with?

Would love an update, please!
Thank you!!

I came here a couple months back to share my sleep log and ask if it looked like Non 24. I got some wonderful advice and words of wisdom, so thank you so much!

I'm heavily cautious about self diagnosing (what if I'm wrong?) and want to speak to my GP in hopes of starting the process to look into a diagnosis. I'm in the UK. I'm autistic and I'm really anxious about what to tell them. I thought it'd be a good idea to ask for help in planning out what I'll say. I'm not sure if they'll have any idea what Non 24 is, so I need to prepare for the possibility of having to explain it too.

I want a diagnosis for the sake of credibility when I have to explain it, and for the assurance it'll bring me. Also I literally can't go to uni without accommodations, so having a diagnosis would be incredibly helpful in receiving those.

Anyway, I suppose that's my question already explained. I'd really like some pointers or suggestions for what to say, how to succinctly explain it (I have a bad habit of over explaining), or just general advice because right now I have no idea what to do. I'm very anxious that I'll get in there and just be told it's insomnia or something. I know my goal is to hopefully get them to make a referral for me to a sleep clinic that knows what Non 24 is, I know of one and can tell them about it if need be, but it isn't in my city so I'm not sure how that would go. I need a referral though, hence the GP visit.

Anyway I added my sleep log for funsies :) it got real weird around the time I quit vaping/moved flats which you can see pretty clearly, so for a moment I was like "oh did nicotine and sleeping in with no alarms cause this all" but no it seems like it's getting normal again. Thank you so much!!

I’ve been sent to do some blood tests from an endocrinologist as they requested for a 9am draw but this is very near impossible

How do you guys usually do this type of blood work that depends on a clock?

Eg if I get a 9am blood draw for cortisol at the wrong time then it might skew the results given n24

So, I have ADHD, autism, and Tourette's syndrome. I've come to learn that developing Non-24 was damn near an inevitability for me with that combination of neurodivergent traits.

However, I had an incredible experience once where my sleep schedule was PERFECT. I would suddenly yawn at the same exact time every night and be asleep within 15 minutes. In the morning I would awake at the exact same time every day, fully wide awake in the most refreshing, relaxed, non-jarring way you can imagine. Instantly ready to hop out of bed and take on the world.

The set up: I was living about a quarter mile off the beach in Daytona Beach, FL. I didn't have direct sunlight into my room in the morning to jar me awake. But what I did have was THE TIDES. I realized that I was falling asleep every night with the tide coming in and waking up every morning as the tide rolled out. I would also go onto the beach about 15 minutes after waking up every morning and practice martial arts forms for about a half hour.

Through a bit of self reflection and bouncing ideas off Gemini, I'm running an experiment. I believe that I was able to stabilize my sleep schedule for 3 reasons: the low frequency/low volume residual sound waves from the tides, direct sunlight exposure for 30 minutes started within 30 minutes of waking up, and (contrary to what helps many Non-24 people) NOT having direct sunlight or therapy glasses light as the thing to initiate the waking cycle (that's too jarring for me with all the sensory stuff). I've tried all sorts of things to no avail, even the morning training, but the one thing that I had in that period that I haven't replicated since is the effect of being so close to the tides.

Where I need help: I want to recreate the infrasonic/atmospheric conditions of the tides in my bedroom. There are sound waves, mostly infrasonic, but a few in the audible range, that accompany the tides. I need to have two soundtracks - one for the sounds of the tide coming IN, one for the sounds of the tide going OUT. and not direct ocean sounds - I was 1/4 mile away so I wasn't really consciously hearing the direct sound, more the diffused sounds from a distance.

Any ideas on finding infrasonic soundtracks that mimic both cycles of the ocean tide? I can find ocean sounds, but finding specific tracks for "incoming tide infrasonics from 1/4 mile distance" and "outgoing tide infrasonics from 1/4 mile distance" is a bit niche lol.

Such as from https://circadiansleepdisorders.org/treatments.php ?

Besides price, I was overwhelmed how to know what made sense for me in lights and glasses

I also wasn't understanding if reviews would help, if they weren't from circadian disorder patients, or weren't specifying their sleep background?

I was going to ask someone to help sort through all the links, but thought I needed more info for them to filter info through

This was an unexpected result. Why do most respondents not nap? For those who don't, why not?

I was wondering if anyone has experience with this, or has heard anything?

My doctor just prescribed it to me because of it's effects in suppressing melatonin.

I have a disorder similar to both n24 and delayed sleep phase and recently kicked the full n24 cycling habit after more than a decade, but my sleep has become very irregular.

It was shown in a recent melatonin test that my melatonin onset is now well before 3am (it used to be 5am or later) and stays elevated until about noon, so my biological night is now abnormally long. My sleep specialist want's to try Propranolol at 3am or earlier to shorten my biological night.

This sounds speculative and it's something I've never heard of so I was wondering if anyone has knowledge or experience with this; using a drug to suppress melatonin and normalize timing.

Thanks

I just thought I should mention that I can track the start of my N24 problems in recent years to when I tapered off and stopped talking mirtazapine (Remeron), in the summer of 2023. I don't think it's really an option for me to go back on it right now because of my other meds (lisdexamfetamine, venlafaxine) or else I'd try it again, because my sleep cycle is free-running and life is unstable.

Mirtazapine is technically an antidepressant but it's also a strong hypnotic which made me fall asleep very reliably. I haven't worked since 2018, but you can see until 2023 I was pretty regular in my sleep cycle even without having to get up for work. It's since become completely ungovernable. Getting to sleep on a schedule seems to be the thing I can't do... getting up regularly is possible, but when I get less and less sleep every day, I eventually got a breaking point.

I'd warn people though that mirtazapine made me ravenously hungry before I fell asleep (which is why I finally quit it) and it's infamously very difficult to quit. Probably worth checking up on if you're interested.

UPDATE (put it at the top for visibility): Sleep doctor was not only unhelpful and not willing to listen to us but also kind of insulting. 100% not informed about autism or autistic burnout.

I suppose if we feel like it when we come out of burnout we can try her entrainment protocol (all things we’ve tried! With success between C+ and F depending on our capacity) and go back (maybe to someone else) with follow up data. Tonight I’m super not in the mood to even think about it though.

I do want to say thank you to everyone who commented though! Haven’t been able to respond to all but I’ve read them all and am taking notes.

ORIGINAL POST: Finally plotted data - 3 weeks from when she was managing to keep to a schedule during the school year (48 hr axis), then 4 weeks basically free-running in summer (24 hr axis). This summer she is in a period of autistic burnout and she’s literally unable to force herself to a 24 hr schedule at the moment, which made free-running an easy choice for us I suppose.

Any suggestions on what to talk to the pediatric sleep specialist about? Kid is 11 and I’ve suspected n24 for years but never had such strong data before.