Non-24 Hour Sleep-Wake Disorder: My Experience

(Video Link)

Content Warning:
Discussion of ableism, weight, depression, and medical neglect. Looks like my content warning pretty much sums up the video doesn’t it?

Obligatory legal disclaimer. I’m not a doctor, none of this is medical advice. Do not take any of the supplements or medications I have taken without consulting your doctor to be sure they won’t interact with anything you’re taking or any health conditions you may have. I’m talking about my experience and my research and my body. Everyone has unique needs.

Happy November 24th everybody, it’s N24 Awareness day! A thing that like 50 people decided was a thing in a Facebook support group.
Arrested Development clip: “There are dozens of us! Dozens!”

If you’ve watched my first video then you already know that I have Sighted Non-24 Hour Sleep Wake Disorder, which I attempted to briefly explain there, but now I’m going to go into more details on the condition and my personal experience with it. I’m sure my experience isn’t universal but maybe some of you out there can relate or know someone who might relate. Isn’t that the point of awareness campaigns? Anyway, onto the first section.

What is Non 24 Hour sleep wake disorder?

Also known as Non 24 hour circadian rhythm disorder, free-running disorder or Hyper-nych-them-eral syndrome. Gee I wonder why that one didn’t catch on. Non-24 symptoms result when the non-entrained endogenous circadian rhythm drifts out of alignment with the light–dark cycle in nature.

Mmm mhm…So what the f*** does that mean? Alright, weird human body fact: despite evolving on a 24 hour planet, your circadian rhythm is not exactly 24 hours long. In fact, most people default to a rhythm around 24.2 hours long when not exposed to external cues like light signals. People typically only need a little bit of light, not necessarily sunlight, and darkness in order to produce melatonin at the correct times and remain in sync with a 24 hour day. These light/dark signals plus regular mealtimes and a regular daytime routine like work or school means that most people never even know about this default mode unless they’re blind without light perception, in solitary confinement, a hardcore gamer/ master hacker, or in space.

So here you can see this socially normal entrained sleep chart: this person goes to bed around 11pm and wakes up around 7am. Now compare this to a not-24 hour cycle. This is my own actual sleep data, notice how it’s not exactly a 25 hour schedule every day, various things affect the length of my circadian rhythm, some days are closer to 26 hours and some closer to 24 and some days it leaps ahead by several hours. Typically it averages to around 25 hours. And everyone with non24 has a different experience, some people have days up to 30 hours in length, and, in very rare cases, some have days shorter than 24 hours.

An estimated 55-70% of people who are blind without light perception have non-24, which makes sense, you can’t sync up to light signals if you can’t perceive them. It was once believed, and is still often believed, that only blind people can have this condition.

Except some people, like me, can perceive light signals yet still can’t entrain a 24 hour schedule.

So why is that a big deal?

Maybe you’re saying Leslie, I never sleep, I only get like 3-5 hours every night and I’m still going to work at 9am every day. First of all, that’s nothing to brag about, that’s really bad for you. Secondly, the reason people can maintain these kinds of schedules is because of the consistency of the 3-5 hours every night. Your body can adapt to that amount of constant sleep deprivation for a surprisingly long time. It’s not healthy or sustainable, especially if you have any chronic illnesses, and you’re really not operating at maximum efficiency, but it’s consistent.

Now let’s say I try to live on a social norm 9-5 schedule. I’ve certainly tried it enough times to tell you what will happen. Maybe my first day of work I’m waking up at 8am exactly and it goes well. The next day I’ll be falling asleep an hour later and the next day and the next day (“and the next day and the next day”). So after a while my body can’t figure out when to sleep. It feels like I’m waking up an hour or two earlier every day, I’m not getting a consistent 3-5 hours. I’m getting no sleep most of these nights and some sleep maybe some nights if I’m lucky but it’s never consistently at the same time. Imagine if your work or school started an hour or two earlier every single day, like daylight savings time but it never stops. That’s basically what’s happening here.

Physically, my digestion decouples from my sleep, I start dry-heaving or vomit every morning and I can no longer seem to eat anything. I was 20 pounds underweight when I left school in 10th grade. My immune system gets worse and worse and I get an infection of some kind every month or two. Migraines start to happen on a daily basis, I develop ulcers, I reach a point where I can’t physically wake up on time no matter what is done to me– not even if I’m thrown in the shower or ice is stuck down the back of my shirt. After a while I develop horrible anxiety surrounding sleep and bedtime and waking up because my body is almost never ready to wake up or fall asleep at the right times, and this further reduces my sleep quality and self-esteem. The fatigue makes it impossible to hold up my own head, the nausea is constant, migraines are nearly constant, I have basically no control over my own emotions and constant brain fog. And for ten years I was led to believe that everyone felt like this and I needed to just suck it up because no one likes waking up in the morning.

How do you develop N24?

Maybelline commercial: “maybe she’s born with it maybe it’s traumatic brain injury

There’s not much research on sighted non-24, typically it’s much easier for doctors and therapists to blame sighted people for poor sleep hygiene and insist that they just aren’t trying hard enough to keep a regular schedule. The research that is available indicates that sighted N24 likely has a neurological rather than psychological basis though it is often comorbid with psychological conditions.

However, it’s distinct from the insomnia that people with ADHD or bipolar disorder experience in that it has this consistent pattern of moving and hour or so later and later. It’s not just “not being able to sleep sometimes,” it’s being able to sleep but only at specific times. It can develop after a Traumatic Brain Injury though some people are born with it and others develop it later in life. In some cases it seems people with n24 are hypersensitive to light, others may be less sensitive to light, and for some people their circadian rhythm may seem to have no relationship to light at all. The physiological causes of sighted N24 are still not well known or studied. N24 in blind people is typically considered fairly straightforward: their brain can’t receive light signals from their eyes and goes into default mode. Sighted people with n24 can receive these signals but, not to get too technical, something goes wrong in our brains when it comes to processing them and so we, too, return to default mode.

This is all MASSIVELY simplified in case that isn’t obvious. Read the articles linked in the description for more technical research.

Of course a N24 pattern of sleep can also happen when people with entrainable circadian rhythms don’t practice sleep hygiene or are in environments where that’s impossible to do. If you notice your sleep creeping later and later during quarantine while you’re staring at a screen all day and night, eating at random hours, and not seeing people regularly- don’t panic. For plenty of people this is temporary and fixable, but not for everybody. And in many cases it seems to be harder to fix the longer it goes on.

Many people in various sleep forums and support groups I’ve been in initially had delayed sleep phase disorder, which is when you sleep on a 24 hour day but your sleep times are delayed so you fall asleep sometime in the early morning. Basically, you’re a night owl. DSPD is relatively common, particularly among adolescents, but it’s difficult to cope with in a world that runs on a 9-5 schedule. What makes it a disorder is that, like non24, it’s unentrainable. Circadian rhythm disorders are not sleep preferences, preferring to be awake late is not the same as being entirely unable to sleep until the early hours of the morning no matter how tired you are. In order to temporarily fix this schedule, people with DSPD often intentionally try to stay up later and later in order to reset their sleep. They find it’s impossible to fall asleep earlier (because they have a disorder) but possible to stay up later all the way around the clock. So they get a couple days or even a week of sleeping at their preferred time. This is called chronotherapy and it can lead to the development of non-24. Do not listen to any person who may recommend chronotherapy, even if they’re your doctor. In a month or less you’ll be back to your usual delayed sleep schedule. As far as I know, it does not work and can lead to your body learning to ignore its typical sleep/wake cues.

What are the treatments?

All of the treatments I’ve tried also apply to any other circadian rhythm sleep disorder and general insomnia or fatigue, there aren’t many non24-specific treatments out there, particularly for sighted people. I suppose I’ll start with what treatments I was recommended by doctors.

I had a lot of success with Cognitive Behavioral Therapy for Insomnia when it comes to reducing sleep anxiety and spending less time in bed awake. It didn’t change my circadian rhythm but it did help with improving my sleep quality and predictability. A couple years ago, I met with a therapist, who was actually a student, every week for a little over a month to try and entrain my schedule. I liked her, she seemed to know what she was doing and she was being overseen by a doctor who had been working in the field for over 10 years. We determined a window of time that it was acceptable to sleep (between midnight to 10am) and I was not to allow myself to sleep or be in the bed outside of those times.

If I was awake during my designated sleep times I was not allowed to look at the clock because it increases anxiety, do any sort of mentally or physically stimulating activity, or stay in bed because this only increases the association between wakefulness and bed when the goal of CBT-i is to strengthen the association of sleep and bed. That was actually a really useful tip for me. I can’t tell you how many countless hours I’ve spent pretending to sleep or hoping to fall asleep if I just stay in bed longer. I started dealing with insomnia when I was a child and I remember my mom used to tell me to just stay in bed if I can’t sleep because I’ll fall asleep eventually. I’m pretty sure she didn’t believe me when I’d tell her I was awake all night but I distinctly remember being able to tell her, based on people’s footsteps, how many times anyone in our household went to the bathroom while I was supposed to be asleep. Anyway, I used to spend something like 12-14 hours in bed every day, some days up to 16 hours just waiting to sleep, but since I started only going to bed when I’m tired, now I’m typically only in bed for the length of my sleep period which is about 8-9 hours and I fall asleep in less than a half hour after getting into bed.

During my CBT-i treatment, every morning at 10am I sat with a light box for an hour, worked out for a half hour, and took D3, B12, and a multivitamin. Then every night after 6pm I turned off electronics, used only red lights when possible, and wore blue light blocking glasses or sunglasses. I’ll put links in the description to the red lights and blue light blocking glasses and blue light blocking programs for your phone and computer. I still use all of these things, and I’ve blocked off all the little lights in my room. Even if this stuff can’t fix my n24, it still helps me a lot with light sensitivity and migraines.

I also took 1mg of melatonin 3 hours before my desired bedtime every night. When it comes to melatonin, less is more. The melatonin you take is only supposed to act as a signal to your body to start producing it naturally, if you take more than 3mg then your body will think it’s got enough to get through the night when it doesn’t. I’m still experimenting with dosage and timing, who knows if it’ll ever work. Some people, like Eliezer Yudkowsky, have non24 for years and then discovered a way to entrain a schedule. I believe he takes something like 0.2mg of melatonin 6-8 hours before his preferred bedtime. Everyone’s body is different. I already don’t drink due to stomach issues, but my therapist also warned me that, similar to taking large doses of melatonin, drinking alcohol less than 3 hours before bed also lowers overall sleep quality.

The first week of treatment went fine, I was sort of staying up late in order to hit the 12am mark and waking up kind of early in the sleep window. The second week I started losing sleep but I could push through, I thought if I pushed through then I’d eventually exhaust myself and fall asleep early. I started having more migraines, more stomach pain, more sleep anxiety, less energy, and less emotional regulation. My partner would wake up at 10am for work and I would be on the ground crying because I hadn’t looked at the clock so I thought it was earlier and I had not slept the entire night. The third week was a disaster. I didn’t sleep at all for 2 days in a row then decided to go for an hour-long run in addition to my half hour of usual exercise. I hate running, I was clearly desperate. I did everything I needed to do and more but by my appointment on Friday I had been awake for 4 days straight.

When I told this to my therapist she cried. And I cried. And I remember her saying “This has never happened before, I don’t know what to do.”

I discussed pharmaceutical interventions with my sleep doctor and she basically said there wasn’t anything she could get for me. She said if she prescribed a sedative and an amphetamine then that could create the illusion of sleeping and being awake but it wouldn’t change my circadian rhythm and probably just cause me to develop an addiction. Addiction is not uncommon in my family history so, yeah, bad idea. I brought up the possibility of a melatonin agonist like Hetlioz but she said with my insurance and because I have eyesight, that would be basically impossible to get at a reasonable cost. I asked how much and she said she was currently fighting an insurance company to lower the price for a blind veteran down from $600/month. Plus, it doesn’t work much better than taking melatonin, there’s no guarantee it would even do anything for me. She assured me there are plenty of jobs a person can do at any time of the day and she’ll sign anything I need for future accommodations. At that point, I wasn’t even thinking about work or my future, I was still recovering from CBT-i. I just wanted to leave and sleep and never have to deal with trying to entrain my cycle ever again.

Eventually I recovered and I started reading more about people’s experience with treating their non24 so I’d know how much to push and how it would feel if I decided to try again. It seems like people in general didn’t feel like they had to push themselves to stay in their designated window of sleep after starting a successful treatment. They naturally started feeling tired at the same time every day, there was no point where they were awake for the entire night and then were unable to fall asleep the next night. So now when I try to take a different dose of melatonin or try a different diet or add one supplement or another I know that if I’m awake for an entire night upon starting treatment then it’s probably not working and if I can’t then fall asleep the following night it’s definitely not working and I should stop pushing myself.

How did you get a diagnosis?

When I was 15 and had to drop out of school due to constant illness I did not get a diagnosis. Like many people with rare conditions, I had to wait an entire decade before that would happen. At the time I had a lot of nonspecific symptoms: nausea, headache, panic attacks, insomnia, migraines, rashes, dizziness, fatigue, depression. If you have a chronic illness you know where this is going. My pediatrician assumed I was a hypochondriac, but didn’t send me to a therapist for any sort of treatment and instead used it as an excuse to dismiss me. My parents thought I, a straight A honor roll gifted student who actually liked school, was being lazy and lacked motivation.

My weight was my biggest concern, I only weighed 92 pounds; I felt weak and tired and I hoped if I could eat then I could have energy again. So my doctor sent me to a therapist to evaluate me for an eating disorder. Let me clarify something about eating disorders: if a person has an eating disorder they are not likely to go to a doctor and ask to gain weight. It felt dismissive, not because eating disorders aren’t extremely serious problems, but because if anyone had listened to me at all they would know that’s not the issue.

For years I was made to feel like I was just a bad person. All my tests came back normal. An MRI revealed I have a Chiari Malformation, which is a tissue growth in the back of the brain that can occasionally block cerebrospinal fluid, but I was told not to bother making my parents pay for an MRI on my back to see whether or not it was actually blocking any fluid or causing any problems because it’s rarely an issue. So I didn’t. I still don’t know. I was convinced that I was lazy or that I just needed to find something I cared about and that would cure me. My doctors assumed my sleep problems were a result of psychological disorders, which can often happen, but they didn’t think it could possibly be the other way around. Not a single doctor took me seriously when I was a teenager.

The worst was an allergist I saw for hives. My pediatrician had included all my other symptoms in the referral so the allergist looked at all of those nonspecific symptoms, walked into the office, addressed my parents and said “She doesn’t have allergies, please leave my office” without ever talking to me or doing any tests. I still get hives and congestion unless I take Zyrtec everyday and I have no idea what I’m allergic to.

After years of medical gaslighting, I learned to only go to doctors if I know a specific test I want done or a specific medicine I need. Mostly I stopped going to doctors entirely and I definitely stopped telling them the truth about my lifestyle and my sleep. I would tell half-truths like that I was in school studying psychology and I hoped to be a therapist. I kept pushing ahead with school online hoping that one day my sleep schedule would fix itself and maybe I could be a therapist or something.

For some reason, in the 10 years I went undiagnosed, people in my life didn’t seem to see it as a problem. Certainly not a medical problem. I once overheard my mom say that I just needed to find something I was really passionate about to ground myself in reality better. My parents are generally open-minded liberal people and kind of over-encouraged all my interests– buying me a lot of art supplies and telling me to sell everything I painted, thrifting a ton of old jewelry and telling me to sell every terribly constructed thing I put together, buying me a Joni Mitchell book about living the creative lifestyle– all with the hopes that one of those things would be the thing to fix me. Supportive parents who are maybe a little invasive with my privacy isn’t the worst problem in the world, but it puts a lot of pressure on anything I have a passing interest in so I often abandon hobbies pretty quickly or hide hobbies from my parents until I know I’m actually interested. I never really wanted to live Joni Mitchell’s creative lifestyle, people just assumed that about me based on the way I was living. I wanted a regular job as a teacher or a therapist or someone who could otherwise be relied upon.

I was 25 years old when I jumped on the bullet journal bandwagon and started charting my various health problems and my sleep. I was determined to sort everything out because I had only one year left on my parents health insurance and no job prospects. I had been free-running for a few years at that point, I took all my classes online and didn’t need to work because my parents didn’t mind providing for me as long as I was taking classes. When I was on pintrest looking at sleep tracker designs I wondered why there were none that included all 24 hours of the day. That was my first indication that the way I sleep might be medically relevant.

In the bullet journal I noticed this pattern of my sleep times moving forward by approximately the same amount every day where previously I felt like it was mostly random.

This was because, when I was 16 and started college I would try to go to a class twice a week or otherwise have weekly engagements because I thought I needed the discipline. To keep up with weekly engagements I would try really hard to keep my sleep in one place until it would jump way ahead and then I’d have to force myself to wake up or stay awake for class which would make me sick and throw everything off. I’d end up sleeping on the couch at any odd hour for a while until I could go back to regular life. Every so often I’d try to throw myself into hardcore schedules and do-or-die situations thinking I just needed the discipline. When I was 20, I moved cities to be with a guy I met online because I thought maybe I just needed to change my environment and force myself into a job and regular school schedule. That time was maybe the worst few months of my life, I couldn’t do any of the things I needed to do to help pay rent and couldn’t even get to class. Constant panic attacks, migraines, suicidal depression. Total disaster. Throwing myself into commitments at random lasted until I was around 22 and got into a good university which I could do entirely online. I decided to give in, let myself sleep, and focus on school. A word of advice: If you keep throwing yourself into commitments and getting so fatigued you can’t continue, you probably don’t need discipline, you probably need medical help.

I wish I remembered how but I learned about Non-24 somewhere online and I saw sleep charts that looked like the ones in my bullet journal. I want to say maybe my partner found it? Or possibly it was when I researched Delayed Sleep Phase Disorder. I was told at some point that I might have DSPD, and people often get N24 confused with DSPD. I think that might be because it’s more notable when a person is awake really late at night and, when necessary, I could stay awake seemingly indefinitely, but couldn’t force myself to wake up. Now that I’ve had a couple years of healthy sleep, I struggle the same amount with waking up and a lot more with staying up.

Anyway, my partner convinced me to take these charts to my doctor, who I had previously always pretended to have a normal life to, and I got really lucky. She took one look at my sleep chart and said “Yup that’s Non24” and referred me to a sleep specialist who had experience with it. Then I went through CBT-i and did all the things you already know about. My doctor didn’t judge me or scold me for not talking to her sooner or for pretending like I was okay for years, she just complimented me on my bullet journal. Because of the ease with which I got referred to the sleep specialist and how routine it felt, I didn’t know Sighted Non24 was controversial at all until I joined various support groups for it online. I didn’t know that so many people have to go through several doctors before finding one that believes them, let alone knows how to treat them. There are often people in the Facebook group who ask for doctor recommendations because they can’t find anyone who believes a sighted person can have Non24. So yeah, I got really REALLY lucky there.

How the f*** do you live like this?

Free-running is a logistical nightmare. Scheduling more than a few days ahead of time is basically impossible and routines are similarly difficult to keep. This loss of routine has been the hardest part of the condition for me, personally. I was the kid who actually used the school planners and rotated my pencils seasonally. I’ve had about a million different organizational methods I’ve tried over the years and I’m sure I’ll switch it up again soon but I’ll go over what I currently do.

Basically, I keep a ton of lists. I have a list of what I want to do this month, a list of what I want to do this week and write a new to do list based on these lists every day before I go to sleep. At the top I approximate when I’ll be awake and when I’ll be asleep. My daily estimates are like 80-90% accurate and my weekly ranges I’d say are something like 60-70% accurate. I haven’t been keeping up with any of this very much in the last couple months due to both issues with medication and personal issues but I also like to keep a whiteboard above my desk with the week written out and any things I need to do on specific days or at specific times. That’s also where I figure out my weekly sleep forecast. I try to send this chart to my friends on Sundays or whenever I remember to do it so they know when or if I’ll be available. I often lose days in my week so it’s hard to do anything regularly on the same day. My best friend actually loves the forecast because for some reason she likes to check the weather all the time and this is just another forecast she gets to check.

My least favorite times to wake up are from about 3pm-9pm because it’s on the edge of normal so I often try to schedule things for right when I wake up so that I can still see my friends or get various chores out of the way before I’m completely nocturnal. That’s when I start to get anxious about oversleeping and messing up my already tentative plans. I start to wake up to a lot of missed messages or worry that people are going to stop talking to me. Plus I wake up right at the end of everyone else’s days so our energies tend to be different. Everyone else just wants to relax but if I start my day like how most people end theirs then I kind of never want to start my day at all. I tend to get a lot of migraines on this schedule because I’ll try to watch movies with people when I’m not ready to look at screens yet.

My favorite schedule is what my best friend calls “old people normal.” She works in a retirement home. That’s when I’m waking up around midnight-6am. I like waking up in the dark when no one talks to me for several hours and still getting to go for walks and stuff during the day.

Before I knew anything about non24 and I was awake all night, even if I had slept during the day, I’d usually just watch TV or read or talk to strangers online or otherwise do activities that are considered socially acceptable at 3 o’clock in the morning. I spent that time like any person trying to kill time when they unexpectedly wake up in the night and can’t fall back to sleep. Anytime I’d sleep over at someone’s house I’d take my laptop and a couple books or even a whole jewelry project just in case I’d have to spend the entire night waiting on whoever drove me there to wake up. It often feels like I spent the majority of the last 12 years of my life just waiting around- waiting until other people were awake, waiting until I could go to sleep, waiting until I magically felt better. At 27 years old I’m just now learning how to stop waiting on other people for permission to start my life.

It took so long for me to give myself permission to start my day when I wake up, especially when it’s at night. It wasn’t until after I was diagnosed two years ago that I finally let myself leave the house alone at night in order to go to our 24 hour community gym. When I did, it was like seeing stars for the first time. Until that night, I never fully believed I could go on living if I could never have a regular life. I didn’t think there could be any joy in my solitude. I thought there was something wrong with me, something horrible and unlovable. These thoughts lived comfortably in my mind for 10 years while I waited and slept and waited and slept and waited and slept around hoping to find someone who could cure me. But that night I felt a sense of childlike wonder and mischief, I felt giddy, I felt free. I felt like I was on the best date of my life and I was falling in love.

Starting the day on your own terms in the middle of the night is something few people will ever experience, especially not on a regular and continuing basis. I get to see the same streets at a different time every single day all around the clock. I get to swim by myself and read by the pool in the moonlight. While it’s true that it’s hard for me to participate actively in people’s lives, I stumble into possibly more private moments than the average person ever gets to see. The early hours of the night are when people tend to think about the things we’re too busy to think about during the day: death, trauma, regret, mental health, secrets, how to live in accordance with your values. I’ve talked to people a lot about the things that keep them up at night.

There are so many things that only I and maybe other people who have non24, get to experience. It turns out the nights aren’t lonely and silent, they’re full of life if you go out and find it. I couldn’t see it before when I was locked inside. Even now when I go out at night it still sometimes feels like I’m a character in a children’s movie who’s on some kind of secret mission. Occasionally, non24 can lend itself to this deep kind of feeling of magical realism, a feeling that I’m not sure many adults encounter much in their daily lives.

I think most people try to arrange their lives like pop songs with verses, chorus, work, school, relationships set in a pretty predictable but still unique and meaningful pattern. I like some pop music, everyone likes some pop music even if they claim not to. But if my life were a musical genre it would be more experimental, maybe jazz. I’ve been given an interesting time signature with which I choose to improvise life, deconstructed in a surprising way that may make people uncomfortable. It’s not everyone’s taste, but I love it, it’s the only way to live that feels right.

I’m not sure if that makes sense to anyone other than me, but it is something I try to remember when I think about the things I’m missing in life. My life isn’t more or less empty than anyone else’s. Every month I get to experience weeks of sunlight and weeks of moonlight. Maybe I don’t need a magic cure because I get to experience a sort of magic of my own.

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