Non-24 Hour Circadian Rhythm Sleep/Wake Cycle Disorder

[Dazzle_255]

Always fun to throw in ridiculously long names. I think for the sake of the board we'll refer to it as N-24.

Well, I know how rare this disorder is. How is everyone else handling it? Or perhaps you're not and you'd like to know how?

[GoldfishSu]

OK, I don't know who I am or what I am anymore....my therapist seems to have given up on me because she doesn't understand what I'm going through... it would be nice to find a chat room to talk... and see where I fit in. My body (or mind?) is obsessed with staying up all night (12am - 6am). I fear that I have Circaduim Rythym Disorder....and what I have read (on the net) so far does not sound promising !!!! I have tried everything I can think of.... doctors, therapy, sleeping pills, bi-polar meds, 3 alarm clocks, excercise, diet..... I am sooooo frustrated and going to lose my job. Is there a chat room out there to talk with?????? help

[Dillon]

If you're having problems staying up from the exact same time every night, then it's probably not N-24. You are, however, experiencing a circadian rhythm disorder. I don't know what to say about your treatments. Have you discussed light therapy and melatonin? Doctors often will blame it on mental disorders first.

[foamy_fan20]

i have been all thru hell, ive been told im a liar, ive been told that im mad. why? coz i cant sleep or get up in any sort of routine, for example one night can go like this

wake up at 10pm then fall asleep at 1pm
then the next is i wake up at 1am then fall asleep at 4pm
its very confusing
and very long winded trying to explain this to every doctor, concellor, person i meet.
ive had doctors give up on me or just not get in contact with me again
i find it hard to find time to wash or eat, i cant work, and i hardly ever see anyone, except for my parents. i have to stay in my bedroom all night, and not move, because my parents need to get up in time for work early in the morning. it is so lonely, and so depressing. because all my friends who live so far away are asleep and when i do evetually get to tlk to them, all they tell me about is college and work, neither i can do. god knows ive tried. i cant even move, because im on a low income. just of jobseekers benefit.

[wetnose]

So what IS N-24?

I've personally got a whacked out, supremely erratic sleep cycle. It sometimes seems like the sleep/awake periods are ratcheting up and down, sort of like messed up clockwork. The biggest constant is sleep drunkenness in the morning, up to anywhere from 11AM-3PM [when it ends].

If left alone, I stay up to about 3-5AM. Then I wake up somewhere between 10AM-1PM, get sleepy again 4-7ish, stay up all night, etc.

Ever since being forced to go to bed/sleep earlier, I can only fall asleep at 9PM, 10PM, or 12-1AM, in addition to the normal 3-5AM bedtime. Normally those occur because I've been forced to stay up all day.

9PM bedtime = wake up at either 12AM, 3AM, or 5AM.
10PM = sleep till 10AM, 12PM, once 2-3PM
12AM = can't really remember
3-5AM = just out till about 1PM

All very random. There's some sort of pattern in it, but I haven't discerned it yet.

[Guest]

i suggest instead of worrying about what time u get up, try thinking about how many hours on average you stay awake and hour many hours asleep, then take it from ther that way you can search for what it might be.

[Non-24 Mom]

This is mainly a reply to Foamy - My son has had delayed sleep phase syndrome since birth. Our experience in getting treatment has been very negative. Doctors, even those claiming to be "experts" in treating it, haven't had any true understanding of it. We are currently seeking a sleep center, or doctor, who truly has expertise in this area. My son's life is very limited, but he does take college classes online, which helps greatly.

[Guest]

yeh, alot of *experts* are still trying to do research into circadian rythm disorders, and are trying to find cures. the only thing i can think of is try looking for universaties or clincs who are doing research studies, that way, you might help find a cure or at least some help for it. having the dpss is not all an endal you son can still live a happy life, its just about adapting. for example, he can still get a job, but work in evening or at night (depending when hes awake* could try to search for a support group near you for yourself and your son to go to. because its always the families who suffer the most. because it affects you as a mum. because you yourself havent experienced it you dont really know what it like or how to help so u feel useless. but youre not. youre helping your son. which is terrific. and its really good that your son is doing a college course online. ermm i was thinking of setting up a msn group for circadian rythm disoreder sufferes, so if you or your son would like to join, then maybe it might b beneficial. also dont give up trying to find some help. there are ways......apparently lol. ive suffered from my n-24 since i was born and never did well at school coz i was exhausted all the time from lack of sleep. and i had to quit 3 colleges because of it, and i cant work, because for me its very servere. but ive found ways of addapting to it. but sometimes it still gets to me, coz you feel on your own.

[foamy]

i have organized a support group for circadian rhythm disorder suffers and ppl affected by it, bringing people together, hopefully if we all unite we can find ways of getting some action of help. by making it more common, and show ppl how it can detroy families and ppls lives.

http://groups.msn.com/circadianrhythmdirordersupportgroupengland

[praecisio]

My 15-year-old son has non-24-hour wake/sleep cycle disorder and I'm looking for groups or forums that specifically address this disorder. He and I would like to participate, but I see that the latest post to this group was in March. Is the group just in protracted latency or is it active at some site I don't know about? Or is there another out there you could recommend?

[Norway]

Hello! I think that Non-24 really is as rare as was suggested in the first post in this thread. The only reason I know anything at all about it is that I keep running into it while researching my DSPS (Delayed Sleep-Phase Syndrome -or- Disorder [DSPD]). Also, Non-24 is more "common" among the totally blind than among sighted people.

So instead of hoping to find Non-24 info and fellow sufferers, you should probably widen your research-interests to include DSPS (DSPD), circadian rhythms and possibly specifically blind people with circadian rhythm problems. That should make it possible to find something pertinent.

An additional problem is that in searching for non-24 you get variations of its name. Sometimes one hyphen before the 24, sometimes both before and after. Sometimes sleep/wake, sometimes wake/sleep; both sometimes with hyphen instead of slash. Sometimes phase, sometimes cycle. Computers generally search on exact spelling only!

I've seen that some "experts" wish to include Non-24 as a subdivision of DSPS. Doesn't make sense to me, as by definition we (DSPS people) do adjust to a 24 hour schedule, just several hours delayed. However, causes and effects, treatments and expertise do seem to justify lumping the two together - just not with the one as a subdivision of the other, in my opinion.

Good luck!

[Guest]

My 15 year old daughter Shari has posted a few messages on this message board, I thought I'd write about her sleep disorder and how we finally obtained a diagnosis.

Shari has suffered dreadful sleep problems since birth and was diagnosed with DSPS and non-24 earlier this year. I spent years dragging her to doctors who basically treated me like a neurotic mother and my daughter as a difficult child. Even after presenting information from the internet at least 6 years ago on DSPS and non-24, all they could offer were psychologists, as she was too young to be referred to a sleep clinic and would have to wait until she was an adult. The only sleep centre available for her age group catered for children with special needs, so she didn't fall into that category either. We tried homeopathy and hypnotherapy with no results. Once Shari reached 13 her sleep pattern went haywire. She has been unable to attend school since then, so could not sit her standard grade exams (which was a pity as she had been in credit classes) and she has lost touch with all of her friends. She very rarely goes out and finds it a very lonely existence. ( I am presently waiting for her school to come up with home tuition or evening classes at college). Eventually last year, one sympathetic doctor gave a referral to a sleep clinic, unfortunately this clinic dealt with narcolepsy and couldn't help. My parents saw a hospital programme on tv earlier this year about a doctor in London treating people with sleep disorders. I wrote to him detailing my daughter's sleep habits. He felt he could help her, so I obtained a referral letter from our doctor and we flew from Glasgow down to St.Thomas' hospital, London, in February this year for a consultation with Dr.Adrian Williams at the Sleep Disorders Centre. I went armed with sleep charts containing all of the relevant information on my daughter's sleep habits which we had kept a record of.

He told my daughter it was a faulty gene which was causing the problem and to call up Period 3 gene on the internet once we were back home. He also prescribed melatonin and provided us with a light box. After taking melatonin for 6 weeks without much of a result, he told her to stop taking it. Instead she was to use the light box for 20 mins after wakening up and try to gradually bring the waking up time forward. So far there hasn't been much progress but we're still keeping our fingers crossed that things will change.

If anyone else has a son or daughter around Shari's age with similar sleep problems and needing someone to talk to, they could contact Shari on xxshazzumzxx@hotmail.com.

Jacqui

[Norway]

Thanks for an interesting post, Jacqui! Just 5 minutes ago I did write to your daughter, having found her address on another thread here.

"Special needs" is a strange euphemism! Shari's needs are certainly special

To the subject matter. Your Dr. Williams may be a bit premature "knowing" for sure about the genetic causes, but I expect he'll be proved correct. Meanwhile, I find the attitude "melatonin OR light therapy" strange. My specialist here in Norway finds both essential for getting me off my DSPS schedule. And that seems reasonable based on what I've read. The melatonin (if timed correctly!) "opens the sleep gate". The bright light therapy suppresses plasma melatonin which one's body may still be producing when one awakens. That's how I've understood it, anyway. Another understanding/opinion I've reached is that the 3 mg melatonin usually prescribed is way too much. Even 0,5 mg may be more than enough.

A dash of cold water: After several months of struggle, experimenting and pouring over sleep diaries with my specialist, my body accepted going to sleep at 11 and waking at 7. Sounds good OK, sounds good. But I'm not me --it's hard to explain, but my creativity is gone. I'm just hoping that it is not gone forever, and that I can go back to getting up at noon and being myself after retirement in not too many years!

Your daughter is indeed fortunate to have a mother who believes in her and fights for her. Keep up the good work!

[Dazzle_255]

Wow, I never thought the N-24 post would get so popular. I suppose I should probably introduce myself as I'm not really well-known around here.

My name is Dillon, and I originally thought I had Narcolepsy. It ended up being a whole slew of things, one of which is N-24. I've gone through the mill and am now on 200 mg of Provigil daily to keep me awake.

Have any questions, I would love to hear them. (Post a new topic if you'd like.)

[taro]

Wow - reading these posts is totally shocking. It seems like I have written them all myself! I have gone through so much of what is described here. i have N-24 (good abbreviation)... first diagnosed as bipolar (wrong) then diagnosed as insomnia (partially wrong) then diagnosed as DSPS (partially wrong)... I "free-run" around the clock. I have seen the best 2 sleep doctors in the midwest and my own father is a neurologist and NOBODY can treat this curse. Since I have been 14, I have been exhausted every single day of my life that I have had to wake up for school or work. Only on weekends did I feel ok. I majored in a subject area in college because it had the latest classes! Now, at 25 I have given up working in the 9-5 world once and for all (and financial issues are starting to happen already). The only thing I discovered is that I am hypothyroid but I don't think that is the cause (though thyroid is related to sleep - it is more complicated than thyroid alone). I was put on benzodiazapenes (huge mistake - major addiction problem now) and mood stabalizers (which i guess are harmless other than the fact I dont experience emotions or have creativity anymore). I have had 1 outpatient sleep study with an actiwatch. Light therapy gives me horrendous migraines and does not work. Melatonin makes me very sick and does not work.

I had an MRI which showed a normal pituitary... the ONLY weird thing was my optic nerves are tiny and asymmetrical... and all the cues for day / night travel along the optic nerves to the hypothalamus from the eye - so maybe maybe maybe... that could be part of it. i would be so curious if anyone else here has had a full brain MRI and what they found.