In the last few weeks I have heard numerous radio spots about “Non-24-hour sleep–wake disorder”. Thinking that this was just another fake/renamed affliction designed to sell medication, I looked it up(Wiki article)…and found it to be very real and very serious, usually hitting those that are totally blind. I was wondering if anyone here was dealing with it, and what they did to cope with it.
Is it different from Delayed sleep phase disorder? I am pretty sure I have one, or both, of these (though I am not blind). These days I am often awake for 24 hours or even 36 at a time (with some involuntary brief naps, falling asleep in my chair), and then, if iI am lucky, sleep for 10 or 12, often during the day. I tried to get some treatment a few years back, but I could not really get a doctor to take me seriously, despite me having researched it in the peer reviewed literature. (They kept diverting it all to be about apnea, which I may have, mildly, but is really a quite different issue.) Actually they helped make me worse. Originally I was on close to a regular 24 or 30 hour rhythm, except I was generally going to bed at about 5 in the morning. The alleged sleep specialist doctor encouraged me to stay awake through my normal sleep period to get back in sync. It made it worse.
Since your link goes to the exact same Wiki article as mine…
No, I think he meant to link this -
As for non-24 hour syndrome, I’ve had that my whole life. I should have known there was a wiki page for it (although I don’t know what I would have called it.) Left to my own devices, my body wants to be awake for at least 18-20 followed by 10-12 hours of sleep. My “bedtime” cycles naturally around the clock. It’s a colossal pain in the ass. I’m 45 now and I’ve pretty much given up fighting it.
Maybe I’ll print out some stuff and talk to my doctor. Although it seems like they suggest melatonin for it. You can get the over the counter, can’t you? I don’t think it’s ever made any difference.
I was diagnosed with it (free-running circadian rhythm disorder) just recently (at 45). It first started showing up sometime in my teens, and has continued through today. When left to my own devices, I tend to sleep anywhere from 7-9 hours at a stretch, but then every other day or so I would not fall asleep again until 2-3 hours later than the previous night. I used to try to just brute-force myself to sleep so I could get up and go to school or work, and, when I failed I attributed that failure to depression and poor sleeping habits.
After a while, I started doing a 5 hr sleep with a 2-3 hr nap during the day, which made it easier to brute force my schedule - I failed somewhat less often. This has, in addition to the depression, meant I had to find pretty non-traditional work and was best off when I could set my own schedule completely.
A few years ago, I had a heart attack, and take a number of related medications for that. After a while I found that I was no longer able to brute force my sleep schedule into any shape whatsoever, and I pretty much gave up and let my sleep schedule have it’s way with me.
Just recently, however, my GP sent me a referral to a sleep specialist (after I explained why I had missed a couple of check-up appointments). I kept a sleep log and presented it to the specialist at my appointment. After a few questions, he was confident that I fit the diagnosis.
Treatment for me consists of using a lightbox (one that is rated for sleep disorders and SAD) for 30 mins in the morning, 3mg of (OTC) Melatonin at 7pm, and a bedtime of 10-11pm. I also have a scrip for Ambien to help me move my sleep schedule around to the appropriate times if I should get out of whack, but I have managed to avoid using since the initial adjustment.
After about a month of treatment, I was happily settled into a normal and regular sleep schedule, and the sleepiness that has plagued me my whole life is now only an occasional problem. Judging by the specialist’s reaction, my response to treatment is remarkably good.
I haven’t heard any radio spots for it. What are they selling, and why are they targeting such a small demographic?
Interesting, thank you. Looks like its mainly an awareness campaign.
Knowing how much this kind of information would have improved my life if I had only known about it when it started, I’m glad to see that they’re getting the word out. A lot of people could be helped by this campaign.
Orr, what light are you using? The ones on Amazon are all kind of pricey and/or huge. I’m wondering about just ordering the lightbulbs …?
What do you think of this one -
Czarcasm - thanks for that link. I’ll definitely read through it all.
I don’t really know enough to judge that model - the claims they make sound almost right, but I didn’t notice any specific diagnoses (e.g. SAD) mentioned there. The power looks to be about 7,500 lux lower than mine: DL930
My insurance covered mine, and I only had to pay $20.
I’ve been using this one. It’s actually fairly cheap (for a SAD light), is extremely small and lightweight (albeit not the sturdiest of construction), and uses LEDs instead of bulbs. It’s a very directional light, but that’s not a bad thing - just can’t use it while doing jumping jacks. And the automatic timer settings are very convenient.
I’d be a bit wary of the Verilux you linked to because it uses non-standard bulbs, and it only gives off 5000 Lux at 6-8 inches. That’s a couple of hours of too-close-for-comfort lamp every day - a bit too much for me.
This is a curious topic, because my sleep cycle has been extremely disturbed during the last several weeks. However, my status appears to be acute (non-chronic) since it’s obviously been triggered some craaazy stuff in my life recently – mostly family-related issues, as well as some bizarre, random incidents that caught me totally off guard. But it’s enough of a concern to ask the Teeming Millions = am I ok?
Ambien, sadly, has zero effect on me, in fact it achieves the opposite result by keeping me awake and wired. I should try Melatonin again, if I can remember where to buy it (the local stores don’t carry it, I’m fairly certain.)
No wonder I couldn’t find anything on it, I thought the guy on the commercial was saying “nine-twenty-four”, and thought it had been made up.
He *does *sound like he’s saying “nine-twenty-four” and that’s what I Googled after hearing the add about a hundred times. Fortunately, Google was smart enough to show me “non-24” results and I got it.
I may have a small touch of it myself. Left to my own devices, I’d stay up about 20 hours and sleep about 10 hours. I think I’m just wired for a slower planet.
I’m OK, you’re OK. 
Well, I hope so, anyway. Stress can certainly affect sleep, as can any number of other issues. I wouldn’t worry that you had this particular disorder unless it has been with you since adolescence. But I realize that you aren’t saying you think you have this disorder, just that there’s a coincidence with sleep disturbance.
I get my Melatonin (Nature Made brand - my research a few years ago indicated that this was one of the only “herbal supplement” type companies that used anything close to pharmaceutical grade processes… I hope it’s still true that they do) from Target. It should be available pretty widely at least in the US. Maybe ask someone in case they stock it in a different aisle or something.
I would recommend getting some MD’s advice before taking it, though - apparently there’s some debate about what dosage is good for most people. The research I’ve read about is clear that 3-5 mg is very common for the disorder under discussion, but apparently that dosage may not be beneficial for other issues.
For anyone suffering from general sleep problems: all the old, boring advice is really your best first line of defense. Cut down on the alcohol, nicotine, caffeine (and any less-legal substances), get some good cardio in, shut off the TV and internet a good hour before bed, etc. If that doesn’t get you some good sleep, it’s worth checking in with a doctor before going for the Ambien or the Melatonin.
Hello,
I really really need your input on this topic! I am about to be 50 years old and have had problems since I was about 13 years old, with only being able to be awake for about 9-10 hours a day before I feel like I am going to literally die if I don’t fall asleep before I reach the 11th hour of being awake.
I have spent tons and tons of time and money on every kind of Doctor there is to only be put on antidepressants of some sort. I have been dx with mild sleep apnea with no help from a sleep machine. Also dx with fibromyalgia many many years ago and have been living on pain medication for about the past 20 years which helps with the pain but not the fatigue.
I heard this Non -24 thing on the radio and thought wow that kinda sounds like me! The only difference is I can only be awake for no longer than 11 hours at a time and I take a nap for about 2 hours and then go back to bed for the night in a few hours after my nap. And I feel like a zombie after my nap but I don’t feel like I am going to die anymore. Then in the morning when I get up I don’t feel refreshed and I am foggy headed all day and it is really hard to concentrate and I feel like I am stupid because my mind feels like it is full of clouds.
It has always been a struggle to work but I must because we cannot survive on one income. Everyday on my drive home (if I have been up for at least 9 hours) my body is trying to fall asleep and I have to give everything to not let it and if I pass up my opportunity to sleep then that’s when I feel like I am going to die, my throat gets real tight, I clench my jaws and grit my teeth and my heart beats funny even though I take heart meds for that problem.
This is and always has ruined my life for the most part. If I take my nap at the time my body tells me I am fine (except for the foggy headness and fatigue the next day) or should I say I don’t feel that dying feeling anymore!
My husband and I moved in with his sister a few years back and she had two little children at the time that of course didn’t nap so I pushed my self for about 4 months with no naps and I came down with tons of muscle pain so bad that it felt like I had millions of knives stabbing me in the back and shoulders and that’s when I was first dx’s with fibro and I feel its because I pushed my body past its limit and it fell apart.
Is there anyone out there that can give me some insight on whether this sounds like it could possibly be Non 24 that is my problem or if this sounds similar to anyone out there?
Thank you so much for taking the time to read this let alone respond!!
Sincerely Exhausted and would like to give up sometimes!
Joyce
I have to ask-are you blind?
Around here, the pharmacies have it in the vitamin and supplement aisle. You can also order it from Amazon for pretty cheap.
I guess I forgot to include that No I am not blind, but I am legally blind without my glasses.
The drug they’re selling has recently been approved for the disorder. They’re targeting the completely blind because they’re a population that has been hard to treat. The human brain uses light to help regulated the circadian rhythm - in truth virtually no one has an inherent 24 hour day but various cues throughout the day, including light, helps keep the internal clock calibrated to exterior reality. That’s why a lightbox was part of your treatment.
If you have absolutely no perception of light whatsoever then, obviously, your brain isn’t getting any light cues to help it regulate the circadian rhythm. That’s why the emphasis on completely blind - many people without useful vision nonetheless retain some sort of light perception.