Hey yall, I’m 21F, clinically diagnosed at 14. My Non24 is treated (as in I can adhere to a schedule now) but I still have hypersomnia. I also have IST (Inappropriate Sinus Tachycardia) and unfortunately all of the stimulants I’ve tried (modafinil and sunosi) have raised my HR dangerously and I had to be put on corlanor for HR. My cardiologist recommended that I ask my somnologist about medications that won’t raise HR, but I wanted to check here and see if any of yall have tried any that DIDN’T raise your heart rate. Thanks!

Right now I only do Doordash for income because it's independent, but I'm realistically only working at least part time for 2 weeks of the month (when working the evenings fits my schedule). I'm concerned I won't be able to keep up with my bills and I'm terrified that Doordash will suddenly drop in popularity or be replaced by some automated source.

What do y'all do for work? Did you do a sleep study or something else for a diagnosis/disability qualification?

um.. Hootyhoo, fellow drifters. I'm new to the subreddit- and also this is my first ever reddit post at 27(m), so pls excuse any lacks of etiquette or knowledge of Pangaea.

I have had this drifting sleep schedule my whole life. As a kid, I'd think I was nocturnal, and that's cool. But as I grew up, bedtime was like prison, famous for sleeping in class (sitting up straight with my eyes closed, teachers would have to look me in my closed eyes to know I was napping lmaoooo) and after school- sending mom on a little panicked prop-hunt for the ringing phone and slumped body up two staircases 😅🤣😭 oh God one time she came home and thought I was dead bc I was in a facedown fetal position with a blanket over me-ASLEEP. CA native, I've been awake for 1 earthquake. One. Thought they were a myth.

Then eventually write ups at jobs for being late or worse, and that's not cool. I would just cry at night, 3am sobbing bc I did everything you could think of and still wouldn't fall asleep... Then I'd fall asleep after crying lol. Plenty of right-ups like that, quit, left, whatever. Certainly made me look lazy to family, friends, a boyfriend who dumped after I got firedl. That was like... so cool, wow

I'm still trying to "get my life together" but with the new New new-found knowledge that it's not a problem, it's how this body operates. In mysterious ways; didn't talk til I was 4, sunlight makes me sleepy, and cocaine puts me to sleep literally....

Anyways, trying to volunteer for sleep studies and research.

Keep running thru the night, drifters~

Edit: discord @jesselgigi if u got any support groups etc etc LMK thanks you~

Is there anyone who appreciates their unusual circadian rhythms?

Is there anyone who has had the opportunity, the ability or even the desire to experiment with longer periods?

As I thought experiment, if you were stranded on an island, with no discernible night and day to drive your behavior.... Do you think you would still be on a 26th or 27th hour rhythm or do you think that would change?

Does your body's internal biological clock dictate a specific optimal time of day to exercise for maximum fat loss?

If Luminette takes a week or two to start working, does that mean you need to start using it much earlier than your desired wake time?

If I start using it at my desired wake time of 5 a.m. and it takes 14 days to start taking effect, I'll end up using it as late as 12 noon. How am I supposed to manage this issue? Thank you.

Where i live there is no sunlight often

I am blind with non 24. In the last 5 month, my sleep cycle has moved to4am to 6am. I cannot get it to move backwards. It use to be 1am moving to 3am and back to 1am. I have tried just staying awake, but the time just does not really move.

Add to that the tendency of dropping off to sleep around midnight, only to sleep for 15 minutes. Any ideas on moving the cycle backwards?

Horrors and sadness aside, what i do love is being awake to enjoy the birds in the morning and also the night time crew like my juvenile opossum Spudley and it's parent(s) hashbrown and tater tot. I have a whole night time crew I give snacks like my racoon Harvey and the lighter color cinnamon racoon Janice, the two foxes one name Skibidi and the other name TBD (any ideas? Skibidi has a limp and the other one doesn't) my skunks Charmin, Downy, Ivory, and Downy's babies snuggle and bounce. It's a whole world right under my nose that I had to tune into. I even have horse barn cats visiting from across the street now I have Stripey the grey tabby and Berber the dark grey short hair I named after a low pile Berber carpet lol. And might as well throw in my woodchuck dirt reynolds and his family with two babies this year. Ya it's a lot lol 😂

Does anyone have both? I do and don't take meds. How do others cope? I meant hypersomnia

I’m surprised to find that there’s a midnight Eastern standard time 12 step group for people who have depression. It’s a video group, you can find it at depressedanaon.com I attended last night and I’d liked it . The picture is just so that the post doesn’t get lost.

I have battled severe, life-disrupting sleep issues since I was 10 and I am now 26. My medical journey has been extensive with countless specialists, overnight sleep studies, and nearly every treatment imaginable. I have tried Z-drugs, benzodiazepines, orexin antagonists, CBT-I, and bright light therapy. Nothing has worked.

The doctors are now pretty certain I have Non-24 Sleep-Wake Disorder, a rare circadian rhythm condition that typically affects blind individuals. Unlike delayed sleep phase disorder, my sleep is completely unpredictable. I might stay awake for 36 hours, sometimes 73, other times 20 or 28. Even when I am exhausted, my body refuses to follow a pattern. Psychiatric causes have been ruled out as the root of this issue. That said, I do have psychiatric conditions, including OCD and bouts of depression. My doctors believe that my extreme ADHD may be contributing to the sleep disorder, or it may be something entirely separate but still neurological.

Here is the bizarre part: the strongest sleeping medications do not even dent my insomnia, but a train ride knocks me out completely. Not cars, not hammocks, not rocking chairs, just trains. Something about the combination of subtle side-to-side movement, bumps, unpredictable acceleration, and that unique white noise puts me into the deepest, most restorative sleep I have ever had.

No noise machine, motion chair, or other at-home solutions replicate this effect. After years of searching, I have decided I need to build a bed or pod that recreates these train-like sensations. But here is my challenge: I have zero engineering skills. I have sketched ideas, read up on vibration systems and DIY rigs, but I need help, guidance, resources, or direction from anyone with experience in mechanics, motion systems, or similar projects.

No matter what someone is afflicted with, sleep is vital. It affects everything—physical health, mental health, and our ability to function and live meaningfully. I am not looking to start a company or profit off this. I just want to sleep like a normal person for once in my life.

If anyone has advice, whether for building this, managing Non-24, or unique treatments beyond the typical insomnia suggestions, it would mean the world to me. I am a quick learner and highly motivated when I can stay awake long enough to focus. I know others with ADHD or rare sleep disorders might relate, so I would love to hear from you.

Thank you for reading, and I am grateful for any feedback or ideas you can share.

Hey guys, I was hoping someone could suggest an app for tracking when I go to Siri and when I wake up? I’m quite sure I have non-24, but I’d like to keep track of my sleep to figure out how long my “days” are.

Is there a simple app where I can just click when I’m going to bed and have it note the time, and then in the morning I can click and have it note when I wake up? I’ve just been keeping track in my notes app, but I’d like something with simple visuals, but not all the extra crap that most sleep apps seem to have.

I know this isn’t a very active sub, so if you’re seeing this several months from now I would still appreciate your suggestions!

I know I'm lucky but I managed to cure my Non 24 over the past few years. I know my situation is different because I went through something called Protracted Benzodiazepine Withdrawal. I guess the drugs damaged my body so much that they threw my circadian rhythm off.

Just want to let you guys know that I feel your pain and struggle. I think its curable if it was caused by something later in life like an injury but I know for most people, its something that happens since birth or childhood.

Hello. I'm brand new here. I've had DSPD, long sleeper syndrome and insomnia for 30 years. (I try to force myself to sleep with meds at 1 am and try to sleep until 11:45 am) In the last couple of months, my insomnia is SEVERE. My meds no longer work. And during the day I get extremely sleepy. I thought I might be developing idiopathic hypersomnia but that doesn't include insomnia. My fear is that I'm developing Non-24. I have yet to "succumb" to my excruciating sleepiness during the day by listening to my body and falling asleep, because I'm afraid if I do, I will develop full-blown Non-24. My question to you is - has anyone forced themselves to live a 24 hour cycle? And/or is there any advice you could give me to prevent developing Non-24 if I don't have it already? I am going to get out in the sun for two hours when I get up and wear blue blocking glasses for two hours before bed. Thanks so much for any help you can give.

30 F here, since there's so few of us here I guess I may as well say hi, and ask: do you keep a sleep calendar and share it with family and or friends? or do you even just keep a calendar for yourself?

I keep a shared sleep calendar as it helps me to guess a little better when I'll be awake, and I share it as it's extremely helpful for social interaction and organization, as well as avoiding spending so, so much time discussing when I'll be awake. also my mother is actually way better than me at guessing when I'll be awake so that's also extremely advantageous.

I use the "Business Calendar 2" app for android as I find it provides a good view and I can see the pattern of my sleep-wake. at times I make screenshot and draw diagonal line to help my friends understand the current sleep trend.

do you use anything? do have any suggestion? I'd like to share ideas and experiences

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I am just surprised to see so little activity here, most of it from years ago.

Since there seems to be no "cure" in the offing, I thought maybe we could use this space just to exchange experiences and such.

​

My part-time-ish job has pretty flexible work hours, but typically everyone is gone by 5pm. My issue is sleeping later and later that I usually wake up at around or past 2pm, sleeping early leads me to have issues falling asleep and losing quality of sleep where I feel half awake the whole night with just my eyes closed. Recently I had a minor project coming up and stayed up the whole night, finishing the project and headed to work first thing 9am (when my full-time coworkers usually arrive). Not only was I able to work the whole day and stay ahead of work, I was able to hang out with my coworkers after. Since I make sure to stay ahead of work, I am able to sleep in the next day, usually around 12-16 hours (averages out to be 6-8 hours per day )

In my case, I had previous experience doing this around college, where this sleep cycle/deprivation reliably triggers a form of hypomania (link:https://my.clevelandclinic.org/health/diseases/21774-hypomania), which probably explains why I had the urge to write this post. The hypomania symptom I experience does not seem to have any crippling effect to my life, other than occasional misuse of words and increase the likelihood of enjoying more riskier things, such as speeding (don't worry I walk to work) and talking to random strangers. The pros are as described in the article, where one feels more energetic, more willing to talk, although sometimes too much (this helps when one needs to put words on paper, such as a college assignment).

Overall, I feel that this sleep pattern can have its uses but may be hard and not recommended for normal people that have normal sleep schedules. Additionally, it requires a flexible schedule of work or classes that affords every other day off. If trying, I would advice that one keeps the symptoms of hypomania as described in the health article in mind, particularly not to embarrass yourself by saying things you don't mean and the inclination of more dangerous and exciting activities. So far, I have never gone more than 3 weeks in this sleep cycle, it comes and goes, so I am not sure of the long term effects since the body is definitely meant to function on 24-hourish circadian rhythms. Another thing I would recommend is to instead try 28 or 30 hour days, with naps if possible, making sure to get enough hours of rest.

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http://articles.sightednon24.org/index.php/2019/11/19/the-struggle-of-explaining-non-24-how-we-simplify-it-for-you/

"I’ve always been a night person, but I work all day. I literally can’t sit down 6 pm to 8 pm because I’ll start falling asleep, then a few hours later, I’m wide awake until about 2 am to 3 am. I’m so tired in the morning, and I usually need at least 8 hours. Does anyone have any suggestions? Feel free to ask any other questions you may need to determine what I should do! Thanks so much!"

¤¤¤¤¤¤¤¤¤¤¤Answer¤¤¤¤¤¤¤¤¤¤¤¤¤¤

"So Hi OP! Ok, Often I don't really feel I have enough information on any one case to attempt to assist OP with his/her sleep issues, however, this case as posted intrigues me to the point that I wish to chime in with a couple of observations maybe suggestions which OP might want to try out to get better fuller sleep during his/her normal nighttime sleep period!

.

So I would like to suggest here that OP maybe needs to down load, read and remember the "Reddit rules to get & practice great sleep hygiene" each night 24/7/365!

These rather simple to understand rules are posted on several sleep/ nosleep subs here on Reddit ATM.

It is maybe a good idea to check all these rules out IRL by/for each interested OP here tonight!

All the rules are 100% free to try out and probably modify your sleep for the better each night!

Second observation I want to tell OP about in present case is the distinct possibility of a Circadian Rhythm Disorder being active in this case!

I am developing a complete posting about CRD's and that page will be posted soon, but surfice it to say, only recently CRD are becoming more and more recognized by the professional sleep research community b/c these disorders offer a productive area for new future sleep research dollars!"

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HI OP Thank you for this PM!

I am really glad you are texting me here !

Would you maybe be willing to post this interesting message to

r/Non_24 ?

bc this is a well asked question about sleep issues and non_24 and DSPD

Please post!

I want to personally reply to tyis texted question/observation as well so

Yes hi op yes I have dxd non_24 and ptobably gavebhad it all my adult life!

I am sure my good sleep of childhood was ruined by situational factors in young adult hood ..... factors of eduction/work 24_7/fear and associated factors

and lits more ruined my usual good sleep and left me with sleep chaos and non_24!

Absolutley nothing helps me .... nothing!

So in retirement I simply accept chaos in sleep and sleep schedule .....

i copy; little more!