Non-24 Hour Circadian Rhythm Sleep/Wake Cycle Disorder

[Norway]

Hi Taro!

The internet is a blessing (it didn't exist when I was 25). The one most important thing it does for us is to let us "meet" others with (some of) the same problems as ourselves. Finally getting my DSPS diagnosis from a specialist was exhilerating, but the reconfirmation found in contact with others with similar conditions has been even more important to me. I've not been just lazy and contrary and inconsiderate and lacking in will power all my life. There was/is a reason! And I'm not alone, though of course no two of us are exactly alike.

I'm something of a missionary for circadian rhythm disorders now, and (like other missionaries?) do sometimes make a pest of myself. It's worth it if I could save just one of us from the sleeping pill routines which make people into addicts while masking the real problem. Your post is a great contribution to that cause.

Your MRI results don't remind me of anything I've read. You may be a pioneer there, and I hope you can follow that up. Are you sure that you've got it right about the optic nerves being the transporter of the light / dark cues? These cues do travel through the retino-hypothalamic tract (or something like that), but I didn't think it was the actual optic nerves?

Many of us have (also) thyroid diagnoses. It can look like they are more frequent among us than among the general population. There's probably a masking effect at work. Anyone with "tired" or "sleep" complaints will be checked for thyroid problems. If everyone in the general population was checked as thoroughly, the frequency might well be the same. (?)

You are not alone in your reactions to light therapy and melatonin. I've read all I can find of relevant studies and they do not explain or even refer to those reactions. Using those treatments with any success is dependent on correct timing which can be very difficult to figure out. (I 'bout hit the ceiling reading one study where they'd analyzed their 8 healthy, normal subjects' circadian rhythms before the experiment but then could report on the results from only 7 of them. The experts had got one subjects' core body temperature rhythm wrong by a good half hour, so his results had to be excluded. So, if a team of experts can't figure it out, )

Anyway, don't completely write off the idea of using those treatments sometime in the future when you and the experts may be better at finding the right timing.

In fact, don't write off even the 9-5 life completely and forever! It's probably wise right now to try to sleep on your own schedule, getting to know it really well. Do a sleep log, not stressing it, just keeping documentation. There is a lot of research being done. Five or ten years from now there may be some answers which no one has even thought of yet.

And welcome as a missionary . Posting as you did can really help others feel better about themselves. Good luck!

[cw]

This is the first time I've been to a chatting place. All your stories and comments were very interesting to me. I have not been to sleep clinics or anything; I was creamed in a divorce and had no money, so I don't know what my sleep diagnosis is. I fight Fibromyalgia, CFIDS, heavy metals, lo thyroid, and other ailments that interfere with sleep. My sleep is very irregular and usually during the day. My doctor said my body reactions were the most irratic he'd ever seen.
He says acupuncture/pressure can change circadian rhythms. Does anyone know about this?
What has helped the most so far is massage every few days for 10 days, then once a week, with non-professional rubs in between. I'll be able to move to once a month. Also, an essential oils technique called "raindrop technique" which is supposed to help everything.
I use supplements and I was taught that if I stand up and put a substance on my belly button, my body will tell me if it will help or not. It's important not to have an opinion and relax; I let my body do what it will. If it goes forward, the substance is good; if back, bad; and if no movement it is neutral for me. I take all my natural sleep aids and "ask my body" each night what it wants. It varies each night, sometimes wanting quite a combination of several. I even ask how many of each. I know it sounds weird, but it's based on the electrical energy put off by the substance or such. Accupuncturists would understand. To test if a substance is toxic, I put it about 4 inches higher on my belly. So far, everytime I've done this, I've been able to sleep within usually 30 minutes. I also use relaxation CDs going all night, gentle radio, or sometimes something gentle I want to learn about. By trying to stay awake and listen, I often fall asleep.
Well, I can't hold a job or have much social life either, so I'm glad to find you. I hope I can get back to you. I oversee my 93-yr-old father's care and a teen son also with sleep problems, so I don't have much time to myself. Bless you all.

[nightcrawler_1982]

i only just came across this website - it seems interesting especially to people like me...or us.

about 2 years ago i had some chronic insomnia - it lasted about 2 months at the worst of it i was non stop for about 4 days - eventually my body just gave up and out i went fro about 20 hours. after that i seemed to get on the mend - i nailed it down to be food additives in certain foods i ate alot of at the time.

lately though i have found it harder to sleep at night, but once i fall alseep i can stay there for 12 hours plus, it is near impossible to wake up and i find during the day i will have at least phase where for about 15-45 minutes my body will just shut down and barely function (makes my work day hard to cope with), my symptons are different to what i had before and this time around i have no stress, i get plenty of exercise and my environment is clean and healthy - i stumbled across this website searching for a diagnosis thinking maybe i had some circadian rythm issues, but to no avail my symptons didnt seem to match any descriptions i could find - anyone have any clues?

cheers

[Eric Van]

I'm a sleep disorder patient who recently (1998-2002) took 17 semesters of psychology and neurosciene at my old alma mater, Harvard, including Circadian Biology with Dr. Charles Czeisler, the world's leading researcher in human circadian rhythms. For the edification of the board, I humbly offer up this proposal and description for four possible different types of Non-24 Sleep-Wake Pattern.

1) Optic Pathway Non-24. Seen in some blind patients, and certainly possible in theory for a sighted individual with damage to the retino-hypothalamic tract (RHT) which brings light information from the eyes to the circadian clock in the hypothalamus. These patients will keep a very regular rhythm, usually of around 25 hours. Note that the light information is not the only timing signal ("zeitgeber") that the clock uses. For instance, physical activity serves as a zeitgeber, and social interaction probably does, too. Some blind people with no retinal input to the clock keep a regular schedule because they get enough timing information from these other sources. Others who are less fortunate have a much weaker set of alternate timing signals.

2) Mutant Gene Non-24. We know from animal studies that various mutations in the genetic mechanism of the circadian clock can cause it to have a fixed period much different from 24 hours. Last I heard, such a mutation had been found in humans (it's time for me to catch up with the field after three years of neglect!). I believe that such patients would probably keep a regular schedule.

3) High Serotonin Non-24. This is my best guess for what's going on in the form of Non-24 that is more or less a severe version of one form of Delayed Sleep Phase Syndrome. That the circadian clock gets a large supply of serotonin is very well established. It's also well established that this input inhibits the light signal coming in from the RHT. There is also good evidence that the input can make the clock run longer.

There is a classic extreme night-owl personality with highly unusual sleep that often doesn't qualify as a disorder because it is actually manageable (if just barely so). Computer programmers are famous for fitting this profile. These folks find it easier to keep a 27 or 28 hour day than a 24 hour one. However, they have a good deal of flexibility with their sleep. When their bedtime gets to be 6 or 9 AM, they can just stay up and essentially "reset" their clock in one day. (This is what sleep doctors call "chronotherapy" for DSPS, which computer wizards discovered years before and called "cycling around" or other various less technical terms!)

This form of Non-24 hour can become a real problem if this flexibility of sleep schedule is lost. If it takes more than a weekend to “cycle around,” it starts to interfere seriously with life.

How do you know if this is your type of Non-24? I have my own theory (very well received by numerous Harvard professors, and vouched for by a number of recent experiments) as to the role of serotonin in the brain and its connection to personality. Serotonin appears to be primarily responsible for cognitive flexibility. Some possible descriptors for high-serotonin personality types:

-- Creative (in the sense of coming up with novel ideas)
-- Changes mind easily if given a good argument for the new position
-- Multi-faceted, complex response to things, i.e., loves one aspect of a movie while disliking another
-- “Head” can easily rule “heart,” i.e., can get over fear of something by reading that it’s actually not dangerous
-- Bad visual processing, e.g., slow to find objects you’re looking for

Two fairly well-established symptoms of pathologically high serotonin levels manifest themselves when drowsy: facial twitching, and auditory and visual misperceptions (e.g., white noise of a computer fan sounds like music).

Note that if you fit this personality profile and suffer from DSPS or Non-24, you do not want to be taking serotonin-boosting drugs of the Prozac family!

4) Narcoleptic Non-24. It’s well-established that narcolepsy causes circadian rhythms to become less regular. Narcolepsy in combination with a pre-existing High Serotonin Non-24 (even the manageable kind) appears to yield a very vicious form of Non-24, in which the “day” averages 25 hours but is routinely anywhere from 19 to 31 without any rhyme, reason, or pattern. It’s quite possible that the actual narcoleptic symptoms will be mild. (This is my story.)

I hope this is helpful to folks, and I especially encourage feedback as to which type of Non-24 seems to fit the bill. (About the only type that wouldn’t be explainable by one of these four is an irregular, out-of-control schedule where there were no narcoleptic symptoms at all.)

[Guest]

Thank you, Eric! I've been thinking, or had a feeling, that there's a need to categorize better. People with DSPS/Non-24 will have many of the same experiences but there seem to be unclear sub-groups, both with regard to symptoms and to "what works".

One detail was especially exciting for me. I've recently been diagnosed with "Auditory Hallucinations" and your post is the first time I've seen suggested a connection between this and my DSPS! It did start sitting at the computer but carried on to outdoors, even. Started out calling it tinnitus, but when I could write the melodies down the diagnosis got changed. Tell me more! How common is this? (My own theory is that this never would have occurred if I'd been allowed to sleep 4am-noon all my life...)

Another familiar point, which I know I share with others, is a lifelong "habit" of adjusting by staying up for about 36 hours. One doesn't have to be a geek, as I started doing this before there were computers. You suggest that this "can become a real problem if this flexibility of sleep schedule is lost." Why/how lost? Do you mean because of society's pressures, loss of resilience through aging -- or something else? Even tho my DSPS is theoretically "controlled" now by melatonin and light therapy, I still do my 36-hour-trick now and then. My sleep specialist says we often do, and he doesn't know why.

One more question, if you don't mind. Your education 1998-2002 sounds like a dream come true. Are you able to use it professionally to help people?

[Norway]

That "Guest" was me, "Norway". It says I'm logged in. See if it works this time...

[Guest]

just found this thread from google, to the guy from Harvard, your High serotonin sounds exactly like me, I have had trouble sleeping normal hours for about 4 years now, since puberty basically, I'm 21 in my third year at uni, I dont even go to class havnt for the last 2 years but i still pass, just winging everything, fairly interesting lifestyle i must say, I wakup at completely random times depending on the situation, there is one thing thats certain though, I simply cannot sleep in any sort of rythm, my body clock is non existent

[Eric Van]

[roguenoir]

Yeah, I found this thread from google as well and I'm highly suspecting that I have this disorder though I haven't had a chance to talk with a doctor about it..

For as long as I remember, I've been a night owl. I simply had trouble falling asleep early. During my teen years, most of my peers were like this so I thought it was normal behavior, considering the many hours I spent on the Internet or playing video games late at night.

Last summer I was unemployed so I simply went to sleep whenever I felt reasonably tired and got up when I felt refreshed. I usually fared well with 6.5 - 9 hours of sleep depending on my physical activity during the day. However, by getting that amount of sleep, I'd have difficulty trying to fall asleep again at the same time I went to bed the last night. My energy levels were fine during the day but I ended up having to sleep an hour or two later ever subsequent night.

Now that I'm back in school again, I've been plagued with both problems falling asleep at the same time every night and sleepiness during the day. It's a great struggle to try to maintain a regular sleeping schedule of, say, going to bed at 11 - 12 and getting up at 7-8. Some measures I've tried:

1) Sleeping only 5 - 7 hours a night so I'll be fairly tired when I go to sleep again at the same time. Result: An alarm is almost always required to get me to wake up. My circadian rhythms are closer to 24 hour cycles by doing this but at the same time, I feel tired and groggy during the day.

2) Going to bed at around 11 every night with the help of Melantonin. Result: Provided that I keep up with this routine ot taking Melantonin every night at 11, I can function on a 24 hour schedule. This is because the melantonin makes my body readjust to the 24 hour cycle every single night. This has worked fine so far but I'm concerned about taking melantonin regularly (even though I don't need it every single night now.) Will it be detrimental to my health or be addictive like caffeine?

[csever01]

I am just looking thru here, I am from the Narcolepsy page. I was diagnosed with Narcolepsy in 2004, but a lot of what I have read suggests it might be either DSPS or N-24. Here's an example of a week in my life, if I didn't have to be to work at certain times or whatnot. I force myself into "normal" times. But if I didn't, here's what would happen (roughly):

Monday: Go to bed at midnight.
Tuesday: Get tired at around 8 pm but don't go to sleep because it seems too early. Then I don't go to sleep till maybe 3 am
Wednesday: Same, don't feel like I want to go to bed until 5 or 6 am
Thursday (where it would get really screwy): Would stay awake all night and finally go to bed around 8 am (now it's Friday)
Saturday (stayed awake all day Friday): Go to bed at 10 or 11 am and sleep LONG LONG HOURS until maybe 9 or 10 pm
Sunday: Go to bed at maybe 3 or 4 pm, wake up at 1 or 2 am Monday morning.

I'm confused. Does this sound like N-24 or DSPS???? or neither?

[foamy_fan20]

heh, i looked back on my old post and yeh, i came across very desperate and upset. so i'm gonna take the time to sit down and get into this again. my name is jacy, and i'm 20 and i live in the uk. i have non-24 and people seem to think i've had it since babyhood. but no one picked up on it as they thought that i was just what they called a sleepy baby. my mum would have to wake me up to feed me as a baby. and i hardly cried, even when i was teething. the doctors thought that i was just slow to talk. the point is, when you're a baby, your brain is still developing and something just weren't right in mine and this was why i was sleepy and such a strange quiet child. i've had trouble throughout schooling with lateness and lack of attendance. it was very hard and it started to show in my grades when i hit puberty, which is when your hormones go on overdrive, and can make some sleep disorders worse. or even come to light if they're been dorment. i tried colleges after i left school, but found it was just too much to get in everyday and concentrate in classes. i tried 3 colleges. none of them picked it up. i've been through people who have just said to me, i've should just go to bed and try and get my pattern sorted out, which was always followed by me going to bed and just staring at the ceiling mosts nights. some nights i was ok, if it was part of 'my pattern'. i've been called a liar and lazy. but i knew that i weren't because i had tried so hard in school to get at least a C and that was hard enough. when i'm up and awake...i can do alot. i'm capable of pyhically doing work and doing things. but who will employ an non-24 girl? no one. not even volunteering. they want someone reliable. i.e regular. now i don't know about most of you, but i have to plan things in advance, even if it's going food shopping. lol. so i can't do that. anyway..i went along to this e2e course near where i live. and they thought i might've been sufferring from depression. so i had to go to a mental ward, and i had to have an assessment done, and the nurse there finally triggered it was my sleep. so she got me in contact with a sleep specialist. now the one i saw didn't know much about circadian rhythm disorders. so she (took a long time) referred me to as someone has already said....mr. adrian williams at st.thomas' i went there with my fiancee on the train half asleep lol with some guy being sick on the train....nice. but yeh oh and it was raining too..grrreat. and i have now been given an activ-watch to monitor my summin or other and in march next year i have to go in for an over night thingie. which i'm really nervous about.

but even though i'm comfortable with being me. and i'm ok dealing with the disorder itself. the only factor i wish it didn't come with. is the lonliness. i have no friends where i live, many have gotten jobs or uni and have moved away. and i'm stuck here. but what can you do?

well i've found ways of coping if your non-24 is really bad. ps2 and dance games , music, tv, dvds, getting out for whatever reason, even if it's to get a paper or mag to read from your local newsie. developing a hobby. etc etc. also talking to people online. i would be lost without my internet, it connects me to all my friends (mostly in norwich). and i'm just hoping to move now and see what they can do about my non-24. but my first concern is moving to a better place where i feel happier.

also....the msn group i've got is still open to everyone for all ages. it's just a msn group. it isn't linked to anything. i have got alot of friends added on it. and they're a nice bunch. it's for everyone including family members. it's about connecting people. because we all know how lonely it can be sometimes.

[Norway]

Wow. I think you describe non-24 pretty well. Whenever I read about it I'm so glad that I "only" have DSPS. Even that will get you called a liar, lazy, inconsiderate etc., etc.

It sounds like you're "in the system" for getting a proper diagnosis and maybe some help. (You can be glad you weren't born a few decades earlier, when such diagnoses didn't exist and society's reactions to these conditions really did lead to depression, reasonably enough. Small consolation, I know.)

You write:

[foamy_fan20]

yeh, i'm glad finally i'm 'in the system' but i have had it since i was a lil kiddo, they just didn't pick it up. because it wasn't that well known as you know lol. but luckly they've discovered alot medically now a days.

i'm nervous about the thing in march, because i'll be sleeping with electrodes stuck to all my body, hooked up to some machine, alone in a hospital, in a small room. that's why i'm nervous. but i'm sure it'll just be fine though.

i have talents with writing, i'm good at poetry and have tried to get it published. but no luck yet. i'm not sure what sort of things i can do. i don't really know how to maintain or even build websites and such. i've only really joined the computer race in 2002 lol. before then i didn't even know to switch one on.

and yeh i still have friends, just in norwich. but i still see them occasionally and i'll be moving up there hopefully soon aswell. but yeh things do seem to be going smoothly at the mo. i just hope it keeps up like that.

[Elvis]

So hey, wow, I just stumbled across these boards, and maybe there are actually other people who have the same wacky sleep patterns that I do!

I've had messed-up sleeping patterns for a decade and a half now, but because I also have some difficulties with anxiety, I never really considered that, gee whiz, maybe I have a sleep disorder, and maybe it has as much to do with the problems in my life as anything else! Yeah, I'm not too swift.

Only recently did I go online and look to see if I could find anything about people whose sleeping schedule cycles around endlessly, and boy, this "Non-24-hour sleep-wake syndrome" thing sure sounds like me.

I don't really have any problems getting the necessary eight hours of sleep... It's just that my bedtime moves ahead by half an hour to an hour each day. At best I can only seem to hold onto a single bedtime for, oh, a week if I'm lucky... but then the inevitable push forward comes, no matter what I do. As I type this, I'm on a fairly "normal" schedule, but in a week I'll be sleeping from 3 AM to 11 AM, and a week after that I'll be sleeping from 7 AM to 3 PM. And obviously this gets to be a wee bit of a problem if, say, I have to be awake for something at 7 AM!

It's terrific to learn that maybe I'm not alone in suffering from this... although it's depressing to also find out that there might not be much I can do about my sleeping patterns! Anyway, just thought I'd post with my tale of woe.

[Norway]

Welcome, Elvis. It surely sounds like you are one of us, at least if you're under 35. (I include both Non-24 and DSPS in that "us", and both of them start well before age 20 as a rule.) Learning that we are not alone fighting this monster is the greatest thing about the internet, IMO!

About 50% of us also get depression/anxiety type diagnoses. Not all the experts agree with me (yet ), but it looks like the trend is to accept that the root of the problem complex is the physical/chemical/genetic circadian rhythm disorder. The mood problems follow, quite logically, because of societal expectations and pressures, often compounded by sleep deprivation.

So what do you do now? Understand it, accept it, live with it is one option. People do! They are often geeks, artists, authors etc. The choice requires a lot of strength. Any significant other must accept it completely. Explaining it ad nauseum to others doesn't work, so you have to learn to let all sorts of "helpful" comments just roll by and stick to your guns. The advantage, for those who manage it, is that you don't waste so much energy and talent fighting against, apologizing for and messing up your innate rhythms.

The other choice is to go for a diagnosis and maybe try out the available treatments. This route can give you a disability label. That takes a bit of getting used to, but it can get you school- and work accommodations which increase your options. Finding the right "sleep doctor" to work with is key. You can waste at least a decade trying out doctors who know other areas of sleep medicine but not circadian rhythms (been there, done that!).

This is getting long and I'm not done yet. That's why I've started a blog on these subjects. The above will be incorporated in an entry there before too long. You can check it out here: ** http://360.yahoo.com/nma120

Thanks for writing. Every open, honest post like yours should make life a bit easier for the next person who comes along and discovers that s/he is not alone.

** Edit 14 June 2006. Correct URL, I hope: http://blog.360.yahoo.com/blog-EkVtCKc_dqe59aJ1wEY-?p=2