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Perpetual, Shifting Jet Lag: Non-24-Hour Sleep-Wake Syndrome and Corollary Discharge
The United States (and much of the rest of the world) times work and school days in relation to the 24 hour solar day. In order to be awake at socially acceptable times for work and school, then, a person's internal clock, or circadian rhythm, must also conform to the 24-hour day. Common thinking holds that cycles may vary considerably within that 24 hour framework- hence "night owls" and "morning people"- but no one can completely diverge from the 24 hour pattern.
Or can they? Today, psychiatrists and sleep specialists have identified many types of circadian rhythm disturbances and disorders. Some are relatively mild- jet lag following travel across time zones, for instance- and generally remedy themselves within a few days <a href="/exchange/#4">(4)</a> Others, however, are more debilitating. Possibly the most debilitating of all is non-24-hour sleep-wake syndrome. People with this disorder, instead of having a 24-hour circadian rhythm, have an internal clock that runs in cycles of 25 hours or more, which may or may not begin in alignment with the 24-hour day. The result (if the condition is left untreated) is a pattern known as free-running, where a person's sleep cycle shifts a few hours later each day, never settling consistently; this pattern makes school, regularly scheduled work, and other daily routines generally taken for granted very difficult <a href="/exchange/#4">(4)</a>. One source describes the pattern as "a state of perpetual, shifting jet lag" <a href="/exchange/#3">(3)</a>
People could easily question why this disorder is often so devastating. Maybe the concepts of 24 hour days and sleep disorders are purely socially constructed, they might say; why not simply allow for more flexible work and school schedules to reflect a diversity of circadian rhythm patterns? But while such changes could certainly be useful to non-24-hour sleep-wake syndrome patients, long-established social patterns are incredibly hard to deconstruct. So long as most of the world adheres to the 24-hour clock, and so long as the non-24-hour sleep-wake syndrome patient needs to interact with others not on their sleep cycle, all the flexible scheduling in the world cannot solve the problem. I became especially interested in non-24-hour sleep-wake syndrome after letting a friend of mine, who has the syndrome, stay with me on a night when he felt he was too impaired from sleeplessness to navigate public transit home. At roughly 8 PM, a time that should be early for most twenty-somethings, he could not walk twenty feet to my doorway without staggering. "I fail the sobriety test," he joked as he settled in for the night, but I thought his offhand remark was a striking analogy; he had consumed no alcohol that night, but an outside observer noting his age, his gait, and the time of night might automatically assume drunkenness rather than sleep deprivation.
It's also tempting to label non-24-hour sleep wake syndrome as an entirely biological disorder. Indeed, neurologists can now name many of the areas of the brain responsible for regulating circadian rhythms, and provide some explanations as to how those areas might be disrupted in those with non-24-hour sleep-wake syndrome. The most important area in these explanations is a pair of small cell clusters in the hypothalamus known as the superchiasmatic nucleus, or SCN. Photoreceptors in the retina receive sensory input of light and transmit this input through the optic nerve to the SCN, which uses the light cues to entrain, or "set," the person's biological clock <a href="/exchange/#2">(2)</a>. Since light comes and goes in 24 hour cycles as per the rotation of the Earth, it follows that human sleep-wake cycles, which depend on light cues, should also be roughly 24 hours long. The SCN also uses these light cues to regulate cycles of melatonin, a hormone produced in the pineal gland. In a person with normal sleep cycles, melatonin levels peak in the middle of the night, lowering throughout the day and rising as darkness begins again; shifting levels of melatonin are associated with overall shifts in sleep patterns <a href="/exchange/#2">(2)</a>. Using this model, one could interpret non-24-hour sleep-wake syndrome as an inability to process these light cues "normally," or as a reduced sensitivity to light cues. This inability or reduced sensitivit, then, encourages underproduction of melatonin at night and over-production during the day, resulting in unusually timed sleep cycles. However, there are undoubtedly institutions in society that encourage abnormal sleep patterns on some level, in addition to physical factors like melatonin problems. Consider American high schools which start at 7 or 7:30 in the morning, forcing students to wake up at 5 or 6. For much of the academic year, there is little natural light at 5 or 6 in the morning. This discrepancy between sensory input and alertness is hard enough on teenagers with normal circadian rhythms<a href="/exchange/#1">(1)</a>; for those with non-24-hour sleep-wake syndrome, it must be especially difficult to adjust to.
The best model for explaining non-24-hour sleep-wake syndrome then, I believe, is one based on the principle of corollary discharge. Corollary discharge, as we discussed in class, is a mechanism that allows humans to distinguish between internal and external sensorimotor input; discrepancies between sensory and motor inputs lead to various forms of discomfort. Explaining non-24-hour sleep wake syndrome in terms of corollary discharge problems emphasizes the complex relationships between biological and societal factors in the disorder. On one level, the discrepancy between non-24-hour sleep-wake syndrome sufferers' internal melatonin levels and outside light cues surely plays a role in creating their irregular sleep patterns. This biological explanation also explains why blind people tend to have non-24-hour sleep-wake syndrome at far higher rates than sighted people; since they take in no light through the retina, the SCN cannot register light cues, which in turn inhibits its ability to regulate the pineal gland's melatonin release cycles <a href="/exchange/#3">(3)</a>. But institutions with rigid, early start times, like some jobs or schools, also create corollary discharge problems, since they force people to be awake at times when light cues and melatonin cycles would otherwise indicate the need for sleep <a href="/exchange/#1">(1)</a>. This discharge explains why shift workers, who may alternate between very early and very late work hours, often have disrupted sleep patterns (although they will rarely have true non-24-hour sleep-wake syndrome, which is a very rare condition.)
Non-24-hour sleep wake syndrome cannot be cured, only controlled. It's interesting to note, though, that common methods of controlling the condition attack both the biological and the social underpinnings. To regulate internal circadian rhythms, non-24-hour sleep-wake syndrome patients can take melatonin supplements before bed, bringing their nighttime melatonin levels up to "normal" and, hopefully, encouraging sleep at socially acceptable hours. In addition, sighted patients may use light therapy: exposure to a bright, full-spectrum light early in the day, in an attempt to mimic the bright light of the afternoon hours when the person might naturally wake up <a href="/exchange/#4">(4)</a>. But social factors, like career choice, can also help in the management of the disorder; having a job where one can work from home and choose one's own hours makes the erratic sleep schedule a bit less problematic.
This disorder is a perfect illustration of why it is problematic to claim that disabilities are entirely biologically based or entirely socially constructed. Claiming biological basis alone completely ignores the fact that institutions like high school may aggravate existing disorders. But claiming only social construction leaves little room for interventions based in biology, such as attempts to alter melatonin cycles in non-24-hour sleep-wake patients; while fighting to change the social bases of the disorder is certainly admirable, there's no denying that it cannot produce the immediate effects of melatonin or light therapy. Balance between these two aspects of the disorder seems to be the key; hopefully, medical professionals and social scientists working together can help to shed more light on this condition, as it were.
Web Sources
http://www.medicalnewstoday.com/medicalnews.php?newsid=2568
2. "Information About Sleep."
http://science.education.nih.gov/supplements/nih3/sleep/guide/info-sleep.htm
3. "Pathophysiology and Treatment of Circadian Rhythm Sleep Disorders"
http://www.medscape.com/viewarticle/465494_30
4. Sleep Disorder Primer
http://health.discovery.com/centers/sleepdreams/sleepdisorders/sleepdisorders.html#3
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Comments
I hate it, i need a job, i have no income.
Well im pretty sure i have this n24 Sleep disorder (sighted), and it affects your whole life, you do not have a set time to do anything, you cant plan a schedule, it affects your social life, and you cant work, thus you don't have any money and how are you then supposed to survive? (i also get random bouts of insomnia which is the worst and scariest bit.)
It is just annoying, especially when people don't understand what is wrong with you. Ive never really understood it, and just lived with it because i was going through a very bad bout of depression and anxiety and thought it was just because of that, however now after reading how many people have the same problem i realize what it is. I have not been to see a doctor yet but it is my next plan of action. Not being able to earn money is the worst part I live in the UK and i dont know whether n24 is classified as a disability, so if anyone from the UK has any ideas for work or disability advice please reply to me. Currently i have no income whatsoever and having to mooch of my family and i HATE it. I would probably be on the streets if i didnt have a family.
Facebook group
There's an fairly active facebook group here https://www.facebook.com/groups/30934017332/
This article is useful but mostly unattended.
The Facebook groups
Yes, the Facebook groups (Niteowl, DSPS and Non 24) are wonderful. Other people, including family and friends and the few sleep specialists who know anything about us, can really TRY to understand what it's like to live with a circadian rhythm disorder (CRD), but NO one can understand and accept like others in the same boat. We compare notes, yes, and occasionally rant. But we don't have to (try to) explain. For anyone with a CRD those groups can't be beat.
I'm a mess!
I relate totally to everything I've read here. Since I was 12 (now 48),I've had trouble falling asleep, and staying asleep. I'm currently addicted to ambien, take neurontin, trazadone, lexapro, and Adderall. I'm so reluctantly happy to see how many of us there are. Thank you to all for sharing. I'm at the point that I cannot fall asleep at all without taking ambien, which as all of you know is violently debilitating. I'm disabled, largely in part to this problem. I've had relationships with several psychiatrists which, for the most part, have been futile. I'm at my wit's end, suffering from variable bedtimes. I've tried letting myself naturally fall asleep,without drugs, but that ends in despair, because I end up awake for DAYS, barely functioning, bitchy, and just a total zombie. I'm nowhere in understanding whether this is socio/biological, but I do know that my father suffered from this same affliction. Just being able to vent this to a knowing audience is priceless. I'm slowly becoming agoraphobic, which is agonizing: I have no social life because I never know when I'll sleep, or wake. I hate taking drugs, but unfortunately I feel I have to use them. I'm so afraid! I'm a mess right now, aside from everything I've already said, because I've recently stopped smoking cigarettes, weed (which actually is a stimulant for me), and drinking. Please, if any of you has found more recent information, reply? I'm massively depressed, have no energy for, nor interest in anything, and I'm so scared of where my life is going. I realize that I'm super aggravated right now due to my new abstinence, but also that I'm chasing my tail. I feel totally helpless. Again, thank you all for posting here: finding you has been the highlight of my day. I'm not blind.
J
non24
I am now 65 and I stopped working at around 52 yrs. I was diagnosed with breast cancer at age 48 went through chemo and radiation a about a month after chemo I was in a minor car accident and the next day I thought I was paralyzed and could not get out of bed until my husband came home and helped me after six months being in in much pain I could get up by myself with great difficulty was sent the Western Hospital in Toronto to see a rheumatologist specialist and she diagnosed me with fibromyalgia and chronic fatigue syndrome that was the start of all my troubles I was always very healthy and fit. I then had another three car accidents not any of my doing within a period of five years. I told my doctor about not sleeping up late and sleeping in late the doctor sent me to a sleep management for an over night study, the results were 130 events per hour, I was told to get a sleep apnea cpap machine which I did used it every night for about 9 months went back for another sleep study the results were the same 130 events per hour so the doctor there said to me I must need vpap machine which is much stronger I used this machine for about 6 months consistently for obstructive sleep apnea, went back for another sleep study and the results were the same 130 events per hour I asked the doctor there what now and by then I was getting very frustrated and he just shrugged his shoulders and said I don't know what else he could do, I went back to my family doctor and she didn't know what else she could for the severe sleep apnea and for the severe pain other than to keep on with the medication and vitamins my sleep each was getting worse by the year I now go to sleep around maybe anywhere around 8am to about 2pm in the afternoon and sleep with many interruptions and my body won't come around until about 6pm in the evening, but every day is different no two days are the same and I get about 3 hours about where I feel normal and then I get exhausted until I go to bed at night around 12 pm and try to go to sleep but I just lie there awake but exhausted, I have taken many illnesses now because of the FM & CFS but the worst is the sleep it has caused me so many problems with family members some of them don't believe that I have these problems they tell me to just get on with my life. I am using a sleep genie therapy machine for about 5 months now but it's not helping but I'll keep using it for now, hope you don't put me down as a complainer because I'm not, when I saw your ad on tv with a blind person I have read many of your sights and see a strong connection there I thought I would investigate.
I feel your pain, and hope you are at more peace?
Hi Agnes,
I'm Jim, and I'm so thankful for your post. I was inspired by your words more than anything else.
Please feel free to reply, or not. Either way, I wish both of us, and everyone else, peace.
Jim
Non-24
Hello Agnes, as I was reading your post it was as if you were narrating my life story in many many aspects! My adult son and I have been suffering from this our whole lives and thought we were freaks of nature and alone. I too saw a tv commercial for the blind and marveled at our similarities outside of the blindness.Maybe there is hope for us after all. I would love to commiserate with someone else that has walked more than a mile in these night owl shoes!
In case anyone is doing research...
Thought I'd post this here, just on the slim chance that anyone happens to be doing research on sighted non-24 at the moment.
I've had the symptoms of non-24 all my life, but not so much a firm diagnosis. Saw some sleep specialists, even spent some time in one of those windowless, light-less sleep labs, but no diagnosis by that name.
For 30+ years I did my best to stay on a 24-hour day. As it turns out, my body likes days between 30 and 35 hours, so, in order to stay on a 24-hour day, I basically have two options, both of them unsavory: 1/ skipping days, or 2/ constant sleep deprivation.
Needless to say, both of these were unpleasant.
For several years, from my late twenties to my mid-thirties, I switched to a nocturnal, but still 24-hour, day (sleep at about 8am, wake at about 2-3pm). This helped—for the first time since age 6-7, I was able to fall asleep without lying in bed for hours and hours—but I still couldn't stop drifting forward without constant sleep deprivation.
About two years ago, I switched to a week of six 28-hour "days". (My work, a mixture of freelance work and workshop teaching, allows this if it's planned carefully enough.)
This helped, but, ironically, the "days" still seemed too short. Even on a 28-hour "day", I was still drifting forward unless I slept shorter than I wanted to.
For the last 14 months, I've been on a five-"day" week, with the days averaging 33 hours, 36 minutes.
This schedule has been perfect for me. I get tired right around bedtime; it works well with my work. For the first time since age 8, I can go to sleep without soporifics, and I can wake up without stimulants.
Even my lab work has felt the effects. My lipid panels are better than ever, despite an invariant diet for the last few years; I've had spikes in free testosterone and thyroid hormones; the whole nine yards.
I've accumulated 14 months' worth of journals, including sleep, wake, subjective feelings, drugs taken (of whatever type), and so on.
Perhaps ironically, the journals may be of limited use--because I've felt so good the whole time!
Still, I just wanted to throw this out there, in case there's some lone-wolf researcher out there who is studying sighted non-24 with really, REALLY long rhythms.
At the moment, I have no time to check in at a sleep lab or to stay in a windowless environment. However, I would be more than glad to take various circadian rhythm markers (blood pressure, temperature, etc) at various points during the day. Or even to wear some sort of wearable device that would take such measurements, provided the device is sufficiently unobtrusive.
Since last month, I've been tracking sleep online rather than in paper journals. My sleep log is here:
http://www.medhelp.org/user_trackers/show/9037155
Thanks!
N
Can't find a description of this
Hi,
First off I'm very interested to find this thread but I have a question for any sleep disorder experts out there. Since childhood (and I expect since infancy) I have had a need for a power nap mid-afternoon, somewhere between 3pm and 6pm. When I was younger I could push my way through the need to sleep but as I got older this became harder and harder to do. About 10 years ago I rearranged my life so that I could have a daily nap at 3pm and all problems were solved. However, recently I did some 9-5 work which required staying awake through this period and developed what I can only describe as 3 months of bad jet lag. I was miserable and in the end it was so bad I had to resign !
This does not sound precisely like any of the circadian rhythm disorders which I have read about as my sleep-wake pattern does stick to a 24 hr cycle and does not appear to be advanced or delayed - I just need 2 periods of sleep in every 24 hrs. I was not raised in a culture which has a siesta so this was not a problem which I learned to have. Is there anything like a genetic / neurobiological requirement for a siesta ? I'm not expecting a cure but some information would be nice.
...neurobiological requirement for a siesta ?
It's obviously not an absolute requirement for all adult humans. Though sleep researcher Dr. David Dinges did say: "Humans are the only animal that volunteers for sleep deprivation." :) But, yes, the "post-lunch dip" is real, even when we haven't eaten; it has nothing to do with a big lunch. Some people say they never feel this little attack of sleepiness. You must be at the other end of the scale. We are all different, of course.
When we are alert and when we are sleepy are controlled by two "forces": sleep homeostasis and circadian rhythm. The homostatic process keeps track of how long it was since we slept. If nothing counteracted it, we'd keep on getting sleepier all afternoon and evening. At roughly 1 to 3 p.m. the circadian rhythm signal kicks in and promotes alertness until an hour or two before we (should) go to bed. Just before this signal kicks in, many people experience sleepiness. The timing of it is influenced by whether we are a morning type or evening type, lark or owl. As the (U.S.) National Sleep Foundation puts it, "...adults' strongest sleep drive generally occurs between 2:00-4:00 am and in the afternoon between 1:00-3:00 pm."
So, yes, I'd say that your "problem" likely is neurobiological. Put the following words into Google and you'll see lots of pertinent links: sleep homeostasis circadian rhythm
...neurobiological requirement for a siesta ?
Thanks for the response. I've read much of the commonly available info. of sleep homeostasis and circadian rhythms and I recognise the validity of the post-lunch dip. My poorly worded question related more to the inability to adjust to the dip even after 3 months rather than whether or not it existed.
Some additional information is that I have an ASD and I now know that circadian sleep disorders are not uncommon among this group. The hypothesis that I'm working on is that of the several 'body clocks' that our sleep patterns are governed by one of mine might be out of sync with the others even though all appear to be entrained to a 24 hour cycle. Sleep-at-need seems to even out many of the rough patches of this issue but attempts to force everything onto the same 24 hour cycle seems to just produce jetlag. I can't seem to find any circadian sleep disorder descriptions which match this pattern and was wondering if anyone else was aware of one. It definitely isn't N-24.
Nope, sorry to have to tell you...
Sorry, Karen.
First, as Harvard Health says, "The sun’s energy turns a chemical in your skin into vitamin D3...", but no one (except you) claims that the sun provides vitamin A, as far as I can see.
Second, sunlight regulates circadian rhythms only through special light sensitive, melanopsin-containing, ganglion cells in the retina in the back of our eyes. Many blind people without light perception have these retinal cells intact and functioning; they regulate circadian rhythms in the normal way. In about half of totally blind people, these cells are non-functioning or missing. So these people often have (the blind form of) Non-24.
Third, Non-24 is only very remotely related to SADD. SADD is not listed among the circadian rhythm sleep disorders. It is, as you indicate, a form of depression.
In addition, you neglect to mention that there are sighted people who have Non-24, too. While you have some understanding of the cause of Non-24 in the blind, neither you nor anyone else can cure Non-24 in the sighted at this time. Its cause (or causes) is not understood; there are several hypotheses about that. In particular it does seem to be closely related to another circadian rhythm disorder: Delayed Sleep Phase Disorder (DSPD). (By the way, the original post on this page appears to be about sighted Non-24, not the blind form.)
For support groups and good information about Non-24, see the links in my post of 18 September 2013. There is also information on Wikipedia, and there is a good support group on Facebook.
Best wishes to all people who have Non-24, particularly the sighted! Here's wishing for better treatments for Non-24 and DSPD in the near future. Or maybe even a cure? There is no cure yet.
Comment abuse for citation purposes
It's been brought to my attention that academic web pages published online occasionally garner comments which are then cited in insurance, legal, or other papers (especially where "disability denial" is the goal) on the usually accurate understanding that most people won't read every source cited, and will believe that if a website with a legitimate looking URL states that a disorder is curable or easily manageable by simple activities or changes in lifestyle, with the name of the commenter and their stated qualifications spelled out, then it must be so. Healthy people often like to believe people with disorders have done something to bring the problem on themselves - this creates a barrier of "therefore it can't happen to me" which the psyche craves.
If questioned, the person citing the comment can claim it was a legitimate mistake, but meanwhile 99% of readers, including medical and legal professionals, won't actually click through to check. I'm not saying this is the case with Karin Futscher's incorrect comment, however her bizarre claim that sunlight creates vitamin A in the skin (this is biologically impossible) makes me wonder whether she's a legitimately qualified person in any field, let alone this one.
Non 24 sleep disorder is NOT curable by sunlight exposure (in fact it's not currently curable at all) and vitamin A cannot be acquired through exposure to sunlight either, Karin Futscher is wrong on both counts.
non-24-hour-disorder cure
Dear non-24-hour sufferers.
I'm a Master of Biological Sciences from the University of Illinois @ Chicago who spent years in my career studying circadian rhythms. I think the non-24-hour disorder is easily curable in blind people, because it is mainly caused by the fact that they tend to be shut-ins who don't get enough exposure to sunlight. Sunlight causes the production of Vitamin A in the skin, and helps to set the daily sleep/wake circadian rhythm. This is the same problem with people who suffer from the SADD disorder (Seasonal Affective Depressive Disorder). So, all the blind people with non-24-hour disorder have to do is to expose themselves to those special sunlight-spectrum electric lights during the daytime hours from sunrise to sunset, and keep them off the rest of the day, and they'll be fine and won't suffer anymore! Really, it's THAT simple! Just try it! It works for all the SADD sufferers, and I'm sure it will work for the non-24-hour-disorder sufferers too! During the warmer months when they can go outside and be exposed to genuine sunlight, that will accomplish the same goal as the special sunlight-spectrum lights. So, Good Luck & best Wishes, and let me know how it works out for everyone!
Sincerely,
K
*
Karin Futscher
I am frankly astonished that
I am frankly astonished that you would put your professional reputation on the line with this response. Entrained non-24 sleep-wake syndrome isn't even easily cured through light response in the blind. The light response travels through the optic nerve and though some non black-blind people might get enough to trigger melatonin production, black blind people never will. I have sighted, non-entrained hypernychthemeral syndrome and all light does for me is to trigger a random response, sometimes it causes melatonin production, sometimes it doesn't and sometimes it does so at a completely random time.
The production of vitamin A or D for that matter has nothing whatever to do with sleep or melatonin production and melatonin production is produced by light response passing through the optic chiasm and activating the suprachiasmatic nucleus, not by passing through the skin. If the SCN doesn't respond, no amount of light of any frequency is going to make a damned bit of difference.
With black-blind people, no light response can usually even activate the optic nerve, let alone the SCN, meaning that without an external trigger like melatonin pills, there is no clock reset for melatonin production.
Those of us afflicted with even mild hypernychthemeral syndrome have heard all of your "answers" over and over again for years on end making us feel that we are being lazy or have no drive instead of suffering from a very real and debilitating disorder that has massive deleterious effects on all of our lives. None of us would choose to have a 28 hour circadian rhythm or to have random sleep patterns. None of us would choose to be isolated from our families. None of us would choose to be unable to work due to sleep disorders.
Yet, your oversimplified and unstudied and, in my opinion, unprofessional diagnosis of a segment of the population you've apparently never even studied fails to address either the health or societal issues we endure. Again, I am absolutely astonished that someone would risk their professional reputation on a post such as this.
Right on!
Right on! That was an excellent post.
But I have a couple questions for you, 'guest'. I've never heard the term black-blind. Does that mean totally without light perception like in no eyes/no retina? (I googled it and found only information on talented musicians who are/were both Black and blind :)
Also, I find the term "entrained non-24 sleep-wake syndrome" (as well as "non-entrained hypernychthemeral syndrome") confusing. Non-24 is by definition free-running? Does the term "entrained" here mean (mild) hypernychthemeral syndrome which is forced into a 24-hr pattern (probably leading to major health problems down the road)?
BTW, I think you are wise to call sighted Non-24 by its other name, hypernychthemeral syndrome. Any kind of Non-24 is hard enough to explain without having what are essentially two different syndromes called by the same name.
I'm sorry you have h-syndrome. I can almost understand how difficult it is to live with. Best wishes.
i am glad to read this
i am glad to read this Information, thanks for sharing. Hope we will read many other good things from you in future also. Regards
Non-24 can be entrained
Non-24 can be entrained though it's more commonly called shift-work syndrome I believe, what I have is non-entrained and permanent. As far as black-blind goes, I had a friend call it that a few years ago when he was losing his sight from macular degeneration, he claimed that he wasn't "black-blind" yet, I've also seen/heard it a few times on television, notably the blind guy that drove the Top Gear track in the UK said that he was "black-blind" and yes, it does mean absolutely no light perception whatsoever. I also have an in-law that is totally without light perception that called it black-blind, so I used it in that context in my previous post.
To the naming, both are correct, both are the same disability and both are identical in the blind and sighted, there is no difference between Non-24-hour sleep-wake syndrome and hypernychthemeral syndrome aside from the name. I only vary them so it's not so repetitive in the text and to make people google hypernychthemeral syndrome for a definition, besides, it's much shorter to type and doesn't contain hyphens. The other syndrome you might be thinking of that's different is delayed sleep phase syndrome or irregular sleep-wake syndrome which are both related to hypernychthemeral syndrome I believe.
My sleep cycles are totally messed up and I'm not blind
I have a tendency to lose track of time at night while finishing up housework so that things are ready for my hubby when he gets up to go to work, and sometimes end up going to bed at 4 or 5 a.m. I can't sleep during the day due to the light, so I keep nodding off. It helps some when I cut off having caffeine after a certain point, but stress has my brain in overdrive mode some days.
Sleeping
I have been reading some of these comments, and some of them fit me! I don't no if I have a sleep disability, buti go to bed around 10:00 give or take and lay there for hours! I can't sleep it's like my brain won't stop talking it goes on and on and on!when I finally do get asleep I wake up about 3:00 to go to the bathroom and I lay there again and think! If gets old! I cant have a job that works first shift cause if I no I have to get up I lay there even longer! Do you think I have something wrong and if so what?
Awareness
Thank you, Anna M., and thank you especially to all the commenters! One almost never sees a comment thread so on-topic, so honest, so helpful. I've read all of it, and I wish I could get in touch with each one of you personally.
First, to be honest and as my name suggests, I "only" have DSPS. But I work with many people, with both Non-24 and DSPS, on our common cause. Why? Because no one, even most doctors, believes or understands us. We're lazy and inconsiderate , etc. We're always making excuses, and why don't we just go to bed on time? Many of us are unemployable. Some manage to get disability pensions, and many don't. Many really don't have the self-esteem they ought to have, myself included.
Non-24 among the sighted is considered to be a "rare disorder". How rare it it really? Look at this list of many commenters! Join the organizations mentioned below and meet even more. We need more research. We need more knowledge - and hopefully treatments for those who want them. We need understanding and support. Most of all, we need AWARENESS among the medical community and among the general public. So we need to join together and work for it!
A two-year-old non-profit, Circadian Sleep Disorders Network, is working toward awareness. See its mission statement, its information sheets and many links, and join at: http://www.circadiansleepdisorders.org (or the shortcut: csd-n.org).
The fifteen-year-old(!) mailing list called "niteowl" is still very active. We inform each other of articles, studies, and treatments which have worked for some. It's a place to vent and be understood and supported. More than 10% of the nearly 300 members have Non-24 or are parents of children with Non-24. Many of those parents have received detailed help with their kids' school situations. To join, go to: http://lists.circadiandisorders.org/listinfo.cgi/niteowl-circadiandisorders.org. There are list archives there and also on a Yahoo group (where you have to be a member): http://groups.yahoo.com/neo/groups/nite-owl/conversations/messages
Before we started the non-profit, we started a wiki, also called niteowl. The only page still updated there is a list of physicians that our members personally have recommended: http://niteowl.wikispaces.com/Recommended+physicians
And, finally, there is my blog where "LivingWithN24" is my co-blogger who has written 4-5 very good posts on Non-24: http://delayed2sleep.wordpress.com/table-of-contents/
I do hope that some of you are still around and are interested in joining us! Welcome!
Thank you!
I've been following replies to this thread for years now and seeing this wealth of stuff has made my day (which began at 16:30 lol!) - thank you! I've signed up for the mailouts and will take out membership as soon as my finances permit, I'm British and would just like to say to any other Brits reading this, please get involved as well, our NHS is in some ways more monolithic in terms of accepting new diagnoses than the US healthcare system, and the recent cutbacks are making it hard even for people with recognised disabilities, so people like us do need to stand together in order to have a chance of being heard.
NHS
Hi Chandra and other Brits,
A person on our "niteowl" mail list just wrote this:
"... the system here in the U.K. has just changed, and a patient can ask for a referral to anywhere in the U.K. now (not just the local health authority), if they can show that the same service cannot be provide locally..."
Perhaps you all knew this, but if not, it might be important.
Marketing research study on sleep disorders
July, 2013
Hello,
Reckner Healthcare, a medical marketing research company, is inviting selected men and women with blindness to participate in a study on the topic of
“Sleep Disorders”
Qualified respondents will be invited to participate in either a 90-minute telephone interview OR asked to complete a series of exercises over the period of 5 days (requiring approximately 4 to 5 hours of your time). As a way of thanking you, you will receive either $100 or $275 depending on the methodology that you complete. The telephone interviews take place July 17h or July 19th and if you would like to do the series of exercises over the 5 days, we will do those the week of July 15th as well as the week of July 22nd.
If you would like more information about how you can participate in this important research project, please call 866-385-8933 and reference study #917. Please note that this is a study-specific toll-free #; if a recruiter is not available, please leave a call-back number and your call will be returned in a timely manner. Please leave a call-back number by entering your 10-digit phone number followed by the # sign. Please call Monday through Friday, 9:00 am to 4:30 pm. As with all marketing research, there are a few questions we would need to ask to ensure that the study is appropriate for you. Please respond as soon as possible as we accept on a first come first serve basis.
Sincerely,
Jen Fisher
Project Manager
Reckner Healthcare
diagnosis help
I'm 99% sure I have this disability. Where can I go to be tested for it? I live in a fairly large city and all the sleep centers, and sleep disorder places only know about sleep apnea and other disorders. I keep hearing about having to take a sleep study but I don't have an inordinate problem staying asleep. I have a problem getting tired and falling asleep, which attaching electrode wires and sleeping in a weird place with people watching me isn't going to help me sleep any sooner.
Someone further down this thread was talking about it being on a blue list so we can stop mooching off our families. I feel the same way. I feel like I love being alive, I wish I could experience what other people do, you accept money from people and you feel guilty about it. I'm at my wits end. But I know you need official doctors and paperwork to claim any disability.
I'm 30 years old, I always was a night owl, always staying up too late, and in the last four years I thought it felt better to naturally just stay awake an hour or two every day. So I have been free reign with my circadian rhythms for four years. About 30 mins to 2 hours each day. I go through a new cycle roughly every two weeks. Someone else said how they were about to go out of the golden days and into the darkness. That is exactly how I feel anytime my bedtime is actually during daylight hours. I think everyone with non24 feels this way because you wake up in the dark when the world is the quietest, no one is really awake or active. There probably aren't other people in your city like you/us. And if there is another non24 person in my city we would probably not be on the same schedule. I feel hopeless.
But now with the stress of life plus this disorder I can't predict my bedtimes and wake times to even successfully plan or attend appointments.
After a year of not caring I realized how debilitating this is and I tried to fix it and make my schedule regular. I looked into natural things like over the counters like benadryl, and meletonin, tryptaphan, unisom, and alcohol. My general doctor prescribed me ambien, and restoril in year two, then sent me to a psychiatrist, who has prescribed me with about ten other drugs and types with a side effect of drowsiness as the goal. Some have worked for a day or two of going to bed at the same time, but stress alone has my bedtime move later by thirty minutes minimum each day now, even on those golden days with excessive physical activity. I feel like I'm going crazy on top of already having the world at large think I'm nuts cause my bedtime changes. I have no clue what damage trying so many drugs over time has done. (tramadol, vicodin, marijuanna, trazadone, seroquel, luvox, elavil, rameron, nuerontin.)
I feel numb inside not knowing what to do or what doctor to see about this.
I want to talk to u! YOU ARE NOT ALONE!!!!!
HI SAMUEL!
I WAS SO EXCITED TO READ YOUR EMAIL...I SUDDENLY DONT FEEL ALONE IN THIS SLEEP DISORDER AND IT FEELS GREAT!
I AM JUST LIKE U AND I HAVE HAD NON 24 HOUR SINCE I WAS A TEEN (NEVER DIAGNOSED, BUT THERE IS NO DOUBT THAT THIS IS WHAT I HAVE BEEN SUFFERING FROM FOR OVER 25 YRS. I AM NOW 45 AND MY LIFE HAS BEEN A MESS FROM THIS DISORDER)...AND I WOULD LIKE TO TALK WITH U...
WHERE DO U LIVE? I AM IN MIAMI, FL...
PLEASE LMK IF U WOULD LIKE TO SWITCH PHONE NUMBERS SO WE CAN TALK!
THANKS,
KIMBERLY:)
Sure
Sure Kim. Email me sometime...tvaddict08 @ gmail dot com
I have actually made some scary progress, by getting officially diagnosed at a national sleep disorder center. So i did find a doctor.
This thread, though useful is
This thread, though useful is infrequently read and responded to, you're better off going to an online support group like this one.
There isn't anything wrong with this but it was originally a student paper and is only replied to at most once a month.
As far as where to get tested goes, sleep testing for Non-24-hour sleep-wake syndrome/Hypernychthemeral syndrome doesn't really work well. You will need to track your sleep hours for some period, a month or two should be fine for a preliminary diagnosis and take that record to your doctor. It's pretty obvious when your circadian rhythm is out of whack but a lot of general practitioners are unfamiliar with it so the more evidence you can bring, the better.
ok
So this non-24 is an interesting label for what I think is normal. My family are all this way. I grew up this way. The world is wrong to label those of us who cannot conform to their cycles and do what strange things they do. Who but an agricultural or manufacturing economy would need a regular schedule? Today's switched on economy it helps a lot to be flexible with sleep. Most issues such as customer support can be easily dealt with on a flexible time. I am mad about businesses that are closed after 5 pm (EST or CST) why? It is not right. Why not allow flexible times when people are most productive to be open for business. With todays constant on we can't afford to be normal. The world is not on an 8 hr work day. So let's try the approach that we are the new norm.
Non-24 Sleep
All my life I've always had trouble sleeping, always being told I 'Sleep too much' or 'I'm lazy' and wa often late for school while unable to sleep a night.
It was only over the past 6 years that I started losing an hour of sleep each day (fallin asleep at 11pm one night, then unable to sleep until 1am). Along with the lack of sleep I was becoming more irritable and often skipped on things like basic hygiene since I was often too tired to care much about anything (even losing lots of weight due to constantly being up for days on end.
Doctor's tried prescribing me sleep-aids; Melatonin being one, and nothing worked. Often I was getting more irritable and still not getting any sleep. 6 years and 2 doctors later, I find out what is wrong with me.
After decades of struggle
After decades of struggle with N24 (see my other posts on this page) I've started experimenting with polyphasic sleep, nothing to report yet but it might help other people so please search up the term "polyphasic sleep" - Steve Pavlina, and a blogger called Puredoxyk have some interesting web pages on the topic.
The theory is you bust out of the need for one big sleep session (wikipedia's article on "segmented sleep" is worth reading to see how this is a post-industrial era invention and NOT natural) and then the new work being done - by educated bloggers who are checking with their doctors - is about how to optimise sleeping so that you need less, and offers greater possibilities of controlling sleep onset times & duration. It still requires work and some sleep dep along the transition, but most of us have to deal with those anyway!
I'm not alone
Wow I can't believe how many of us their are, I have N24 too. I self diagnosed and had to go to 2 different sleep specicalists before I got it confirmed, the first one said the sighted couldn't have N24 and I knew different and that she was an idiot nurse practitioner. Now I keep a sleep journal every day so when I get my day in court I can finally get disability. I am completely unable to work since my skill set isn't in computers. I really feel we need to get N24 on the "blue book" list of disabilities. It's not easy to live like this. Having money to live on would at least keep us from being complete mooches on our loved ones.
My son has this.
Yes, my son has this. Fortunately, he is a gifted programmer working in the computer games industry, an often permissive industry. However, he'd probably be unemployed of he weren't exceptionally good at what he does. He goes into job interviews with this as the first thing he tells them, followed by, " if you can't work this way, there's no point in continuing the interview." I can't imagine how he'd make a living if it weren't that he's in high demand - he never finished high school, never mind college. My sympathies to everyone with this disorder. Have hope: he's also just met a wonderful girl who copes with this (they eat a lot of meals together, but it's often breakfast for her and dinner for him, and vice-versa) so don't give up hope. He coped by refusing to fit in and demanding that the world adjust to him, and so far, it has. So there's at least one success story with non-24.
I am 100% certain I have been
I am 100% certain I have been suffering from delayed sleep phase syndrome for most, if not all, of my life. Now after reading this (among other bits of information on the subject) I think in the last few years I am now suffering from this.
All through school I would not be able to sleep until 3-4am, would catch 2-3 hours of sleep before school, and then spend most of my evenings asleep. Both my grades and my social life suffered due to this. I graduated, held down a few jobs - mostly at call centers - which due to the afternoon-evening work schedules I managed to handle reasonably well with my late schedule, staying awake all night after work and going to bed to wake shortly before I had to be in the next day.
Then I needed to go on disability because of various psychological conditions that have been worsening in some ways over the years, a panic disorder leading to agoraphobia, and in the five years since I've had my two children I'll go months between seeing any natural sunlight as I avoid the outside world.
The last few years I've noticed my cycles changing, shifting all over the place. I can force myself into a normal pattern for a few days, sometimes a week at a time, before it no longer works and I'm back to catching sleep whenever I can, sometimes being awake 36+ hours before sleeping for 12-14. It wasn't until I read all this that I noticed that I'll get tired later than the night previous and it will shift like that, and tied it to anything other than just the regular insomnia I thought I had. I think I will need to start keeping a log so I can monitor exactly when I'm sleeping and for how long.
Thankfully I have a husband who is able to stay off work to take care of all of us, otherwise I don't know how I'd cope.
Blue-light blocking glasses working for me!
I'm pretty excited about this, because being non-24 has plagued me my whole life - I recently bought some blue-light blocking glasses (designed for cyclists and skiers, you can get them at all price ranges, from a few dollars to very expensive, e-Bay's good) and started wearing them from 3 hours before when I wanted to sleep - not a miracle cure but they're definitely helping me regulate a lot better, and for the price plus lack of side-effects I wanted to share because this page is very popular. I've combined them with having a very bright 100watt table lamp on a timer, set to light up an hour before my alarm goes off - much cheaper than the speciality light-therapy lamps!
Btw, I'd already done lengthy trials of having no artificial light, no caffeine, no computer/TV etc for hours before my planned bedtime (not to mention the usual "sleep hygiene" malarkey) and they all had no measurable benefit, and yet for some reason these glasses work - probably because I can still go about normal activities like cooking, watching a movie or sending the odd e-mail, and yet not have blue light telling my brain to stay wide awake.
I did find the restrictions before from limiting artificial light frustrating, which was counter-productive to a good night's sleep in itself and didn't feel like something I could live with for the rest of my life. So, based on that experience I highly recommend anyone who's non-24 investing in a pair (just make sure they cover your eyes and don't let any normal light in) and seeing how they work for you: they've given me new hope, to be honest.
I have it too :( I'm 18 and
I have it too :(
I'm 18 and I've just finished school. Used to be a straight A student until around two years ago when I'd be sleepy in class more often than not. But I did manage somehow and graduated with okay grades. Taking a year off from studies right now and doing nothing at home so very happy but I dunno how it'll be like next year when I'll (hopefully) be going to college :(
How I Cope
At first I thought I was simply a nightowl. Then I found out about DSPS. Later, I realized it was N-24 I'd been struggling with for my entire life! I am on a 25 hour schedule which is really torture when you're trying to live in "the real world" as a single mother. I'll spare you the details of my struggle and get right to my solution. I got work as a "cam model" or "cam girl" about 10 years ago and it changed my life forever. Feel free to write to me if you are a female and interested in pursuing this line of work. I make my own hours and free-run all the time. Life is so much better! And you can literally work as much or little as you want and most importantly, I can work any hours I choose. I feel healthier and less tired when I free run as as for it being hard to wake up at 9pm, 10pm, 11pm, or midnight, well that's only for about a week out of the month and I cope by enjoying the sunrise and doing errands as early as possible.
You can also add me on Yahoo messenger but please send a note to let me know you're a fellow N-24 sufferer.
HI!!!! WHAT IS A CAM GIRL???
HI THERE:)
I ALSO HAVE NON 24 HR...WHAT IS A CAM GIRL????
THX!
KIM:)
So scared because this is me
So scared because this is me and so sad. I was not always like this. It started in mid to late 20's and now I'm 35 so this has been going on almost 10 years. I think at first I had delayed sleep phase syndrome and now it is Non 24 hour. I sleep two hours later and later and then I will sleep all day 9 am to 5 pm. It's awful because I am a mom. I am not sure how I've managed picking up my kids from school and forcing myself to wake up if I have been asleep for an hour or two and help them get ready for school as well. It's been really hard. It has also been very hard to hold a job, just like everyone else has explained. I work from home and barely make any money but thankfully I have a husband who sleeps normally and can provide for the household. It has made life hard. Sometimes I can't make it to dental appointments or events or sometimes I try to make appointments based on estimates of when I may or may not be asleep based on my previous week's sleeping patterns. I don't make friends and keep them either because I'm afraid of judgement on all of my problems. The sleep affects my work and going places and it just sucks. I am lucky I have been able to manage my children and my husband with this sleep disorder but it has been very hard. I wish things would get better for all of us. I wish there were a cure. It is quite debilitating
Some help perhaps?
Hi Y’all,
I’m big on science so have read extensively on the subject of the circadian rhythm, its regulation and entrainment. Below are a few pointers I’ve picked up. Some people may be able to arrest the cycle with this information if it is used in a disciplined manner. For others like me, it may have very little effect.
1. The light frequency necessary to entrain a “normal” circadian rhythm has to be of a high intensity and of the blue end of the spectrum, specifically of wavelengths between 420 nm and 490 nm. Marine lighting specifically for Reef Aquaria and sold under the descriptor “T4 actinic” is ideal for this purpose.
2. Intense light in the morning shortens the cycle (which we all need to do) whereas intense light in the afternoon lengthens the cycle (undesirable for us).
3. Red light cannot affect the cycle so red light can be used to illuminate the house exclusively after dark. You’ll just have to put up with the gossip. Any short bursts of whiter light can upset the rhythm so be strict.
4. Melatonin can be feely bought over the counter at most pharmacies. WARNING, for some people like me it causes depression. A dose of around 3mg or less can be taken an hour before expected sleep initiation.
5. The above can be used once sleep has advanced to a “normal” time, for example 10pm. I would then set an alarm for 6am. Upon awakening I would illuminate the eyes from above, so that intense light enters the eyes for thirty minutes to an hour. I would suggest that the lamp be positioned a distance of approximately three foot from the person’s head. I’ve tried this with a twin T4 actinic light source and found it to be harmless. It has also been suggested that the light source is lit thirty minutes before the alarm sounds so that one can awaken naturally.
6. It has also been suggested that serotonin is boosted in the early afternoon by using 5’HTH. A suggested dose of around 25mg gradually increased to 50mg over a week. WARNING, please don’t take 5’HTH if you are currently on any anti depressants or drugs that increase serotonin levels. It can be rather dangerous.
7. I’m a big believer in amino acid therapies. They can really help to enhance mood if one has an imbalance or deficiency. Some amino acids are precursors to neuro transmitters that mediate circadian rhythm. Amino acids are naturally found in proteins so are not unusual chemicals that the body is not accustomed to. L-Tryptophan deficiency does cause sleep abnormalities, but it is rare in this day-and-age. Tryptophan is a precursor to serotonin. I would avoid using 5’HTH and L-Tryptophan simultaneously. L-Taurine can be used to stabilise excitatory neurotransmitters such as norepinephrine so helps keep a person calm. L-tyrosine is a precursor to norepinephrine and is also implicated in circadian rhythm mediation. I would take 500mg L-Taurine and 500mg L-tyrosine upon awakening, 500mg of L-Tryptophan OR the dose described in (6.) of 5’HTH in the early afternoon and melatonin around an hour before bed.
Hope this helps. I understand that there are others who are well versed in science who suffer from this very debilitating illness. I also understand that many of you will have seen specialists in this field. The above information is by no means meant to be patronising to anyone. Neither can I take responsibility for any problems people may encounter from using the above information but I wouldn’t suggest you to do something I haven’t tried myself. However, if anyone feels they can contribute to this thread or even correct my information, please feel free to do so. The more information we have, the more likely we are to help those who can benefit form information of this type.
Chris
It's good to share!
Thanks for bringing all those tips up. Sadly they didn't really work for me (even at quite high doses above the recommended, after a few days) BUT I agree that a science-based approach is sorely needed, as is sharing any ideas or research on this. Tbis page is one of the top links for non-24 hour and we need to keep talking to each other.
I'm NOW experimenting with this bi-phasic sleep pattern thing, search up "A. Roger Ekirch sleep we have lost" for more info on this, I have NO idea if it will work, but the minute my sleep-phase hits 10pm I'm going to kick into this and see it it fixes stuff. I'm 40 and have had N24 since I was tiny, and it's caused major problems in my life, so I'm VERY motivated to somehow find a key! (Or, get it accepted - I go both ways on this, but I refuse to give up, anyway! By which I mean, I refuse to live with regular sleep deprivation, which is a known form of torture, ffs....) I'll post up in a while if it helps, only as one person's experience obviously, but it might be useful to check out, and I'm in a situation at the moment where I can do that without it messing with my work. I'll keep you posted!
I've commented on here
I've commented on here before: I recently tried taking a legal herbal source of melatonin called asphalia (the regular kind isn't available OTC in the UK) and it totally failed to knock me out, even at way above the recommended dosages, BUT it did make my subsequent sleep periods longer by several hours.
This led me to wonder if my problem, and perhaps that of other people with true N24, is caused by our brains being less sensitive to our own natural melatonin?
If so, that means we'd be wide awake until our brain produced enough of it to really knock us out, instead of feeling pleasantly sleepy after 15 hours like most folk, and it would also explain why I've had some epic 20+ hour sleep periods - my brain had produced so MUCH melatonin, it completely knocked me out for longer than would be normal to someone else.
And I can't seem to regulate my cycle, despite having tried all kinds of day lengths, which would also seem to indicate that somehow in my case a connection is not being made between melatonin release and tiredness.
I'm no doctor and this is only a tentative theory at the mo, I'm not trying to claim it's a definite cause, so I welcome any comments from people regarding this idea.
I have it
I was diagnosed about a year ago. It was a factor in me quitting university. At the moment I am on a disability pension but I am working on becoming a freelance writer.
Non-24 hr sleep wake disorder
Hi David,
Are you in Australia? Were you granted a disability pension because of N24? If so what "medical evidence " did you require? I am asking because my 16 yr old son has just been diagnosed with N24. He was recently granted a Disability pension because of Aspergers syndrome and OCD...but I want some type of Medical letter that Centrelink will accept when we try to explain that he may not be able to join the workforce. Any advice from anyone would be helpful.
Successful student...but for how much longer
I am 18 years old and I was diagnosed with this disorder a year ago. I used to deal with delayed sleep phase syndrome since I was in elementary school. It wasn't until last year that it developed into non-24. I'm a straight A student and I'm constantly sleep deprived because I'm trying to combat my sleep schedule. I have no friends or social networks because I'm not frequently awake the same time everyone else is. No one else seems to understand the chaos I'm going through. This is the first forum I've found on the sleep disorder. I have come very close to committing suicide. It seems like most of you with non-24 don't seem to maintain success. It doesn't look like I'm going to be able to live on a set schedule for much longer and if my grades go downhill, all is lost. I am anti-medicine and I'm terrible at maintaining any routine, so I'm going to continue to refuse treatment. Do any of you with non-24 have a successful social life?
I get how you feel. I was
I get how you feel. I was able to maintain my grades even though I was half asleep, I was a good student and spent the time I should have been sleeping doing homework and studying. I live in australia, though I've been able to maintain socializing through online games. I'm awake when people in america and europe wake. If you're in america I suggest finding an online game with a mainly european player base. It insures someone will be up when you are. RPG's are good games as even if you don't like the game play you can still sit around and talk to people. Good luck and remember there's always people who know what you're going through.
Good article
This article is the best I have seen regarding Non24. I certainly have this disorder and when I explain it to the doctors they don't register. I have spoken to my General practitioner about it on several occasions and he has no idea about it due to it being rare and has not had any other patients suffering from it. I also see a psychiatrist as well who insists that I have bi-polar disorder which I'm prescribed anti-psychotics and a mood stabilizer for that do not help one bit in regards to non24. If I didn't have non24 I wouldn't have symptoms that indicate bi-polar.
There is not much I can say about non24 that hasn't already been mentioned in your comments. I'm sympathetic to all you that have it, the trouble that you have because of it is the trouble I experience. What I would like to hear in further comments is people that have come up with a solution/cure for non24, so I'll stay tuned.
i've had this since i was like 20
dont know what caused it but i got it at around 20.
it made me barely graduate college and hold on to my job.
however i was unusually good at my stuff so i could never really be fired (engineer).
i started a business that involved travel to china where the time zones shifted... and come back to america. So this did not help the situation.
Anyway i'm a successful millionaire and i use my late nights to have fun like going to bars and clubs whatever. Then when im waking up early i use those times to do all the stuff i need to get done during the day.
Anyway i'm happy with it and i know a guy who had it to othat was good friends with me who is now literally a billionaire. So just roll with it. I'm gonna try the light therapy.. i didnt even realize this was a disorder til i read this website.
Finally diagnosed officially
I had been trying to get my GP to send me for sleep testing for well over five years with no success. He had diagnosed me with everything including bipolar disorder until I finally went to a psychologist armed with the information and a rough sleep log (I go to sleep four hours later every day on average) and was finally sent almost immediately for sleep testing. The sleep specialist took note of my rough sleep log and the fact that I had been suffering from the disorder since I was about 13 years old and put me on melatonin (didn't work but it was a good try and had me black out all of my bedroom windows so I could get some sleep during my daytime sleep periods. It is wonderful to actually have the disorder recognized and have people working to help me to manage the disorder after thirty years of fighting it on my own. I was curious if any of you also experience "stalling" every few weeks where a 24 hour clock is manageable for a few days to a week before going back to non-24/free-running.
Hi there This describes me.
Hi there
This describes me. Every few weeks I will actually be in bed by 9 pm and wake up at like 5 or 6 am like most people. I will become much happier and feel so much better but then a week or two later I am back to sleeping a couple of hours later little by little. Sometimes I will sleep from 2 am to 10 am or 4 am to noon and then finally sometimes even 9 am to 5 pm. It is so debilitating. My happiness is always short lived. People who sleep normally are so unbelievably lucky.