Up all Nite? Sleep away the Day?


by Madelyn Griffith-Haynie, CTP, CMC, A.C.T, MCC, SCAC
ABOUT Chronorhythm Sleep Disorders – Part I

lazyMaryVictorianLazy Mary Will You Get Up?

You’ve probably heard that old nursery rhyme where the first sing-song verse admonishes Mary for being “lazy” because she is still abed, then sing-song Mary responds that, “No, no Mother she won’t get up. She won’t get up today.”

Um, just A BIT black and white perhaps?

As reflected in that early childhood ditty, from the point of view of a great many of the world’s larks, once they themselves are up-and-at-em, not only do they consider those of us still asleep lazy, their assumption seems to be that we intend to remain slug-a-beds FOR THE ENTIRE DAY!

At least that seems to the [lack-of] thinking behind the many ways in which they state their expectations to those of us who “refuse” to toe their normative expectation lines, demonstrated by bounding out of bed with the first rays of the sun, bright-eyed and ready-for-bear.

A little empathy and understanding, please

I’m wondering if their tune might change – even a little bit – if they understood that going to sleep and waking up at an hour the “majority-rules” universe considers decent isn’t as simple as it sounds for those of us with sleep TIMING disorders.

For many of us, adjusting our sleep timing to fit
majority-rules norms is a CAN’T, not a won’t.

Flip things around for a moment

Regardless of how many of you out-vote us on the “decent hours” referendum, we have as much difficulty adjusting to your sleep schedule as many of you seem to have adjusting to ours.

  • Many of you say you get too sleepy to remain awake at hours where many of us are highly alert, getting things done, or finally getting into the flow.

Unless it’s New Year’s Eve when you insist on keeping to your truncate-tonight to rise-early-tomorrow schedule, we do our best not to call you names and judge your party-pooper sleep preferences.

I promise it’s no fun, night after night, to be the only person you know who is wide awake once the rest of what seems to be the entire world anywhere near your timezone has toddled off to bed. Life get’s lonely.

And mean. The expectation that we will be awake and alert once YOU have had sufficient sleep is annoyingly inconsiderate, actually.

It’s worse at the other end of the day as you tut-tut-tut yourselves off to bed when we are finally wide-awake and fully alert.

  • The rest of you put yourselves to bed “early” with the realistic expectation that you will be able to fall asleep once you get there.

You seem to believe in your heart-of-hearts that little trick would work for us too, with seemingly no awareness of the reality that most of us have failed at our attempts at it many, many, MANY times.

Our brains and bodies are telling us that it is simply the wrong time to sleep!

  • What if we insisted that you go to bed in the early afternoon,
    hours before you feel the call to sleep?

A time or two to resolve your sleep-debt might be nice, but beyond that, I’ll bet you wouldn’t fall asleep, stay asleep or get restorative sleep either.

And I’m fairly certain you wouldn’t respond positively to our insistence that you stop in the middle of whatever you are doing to go lie down in a dark room with your eyes closed.

I suppose we could force you to lie there quietly for a solid eight hours —  but you still wouldn’t get a solid eight hours of restorative SLEEP.

Your brains and bodies would insist that it was the wrong time for it!

THEN how would you feel?

How would you feel about life and about us when you opened your eyes in the wee hours of the next day to our scowling faces?  What could you have done wrong in your SLEEP, right?

Would your groggy mind understand this logic? We are angry with you simply because you are not eager to bound happily out of bed when our clock insists that it is time for you to get up!

Would it make you feel any better, about life and about us, if we were to remind you forcefully that you WOULD have had enough sleep if you’d simply shut your eyes and counted sheep or something when we put you to BED!?

If you really tried to imagine yourselves into the scenario above, you’d have to admit that we’re a lot nicer to you about the sleep-timing mismatch than you’d be to us if the shoe were on the other foot!

The sleep-timing mismatch truth to tell, we’re a lot nicer to you than you are to us as it stands NOW – any chance we could improve on that sorry state of affairs?

Maybe if we take a closer look at what’s going on here . . .

JetLag and Chrono-disorders

jet-lag-yawnLet’s begin by comparing sleep-timing disorders to the chrono-dysregulation of jetlag.

Jet lagged travelers struggle because their circadian rhythms have been disrupted.

Flying rapidly through several time zones means that their watches will need to be set to a different time than the one their bodies are accustomed to.

Body-clocks aren’t able to adapt to clock-time in new timezones nearly as quickly as a jet can can relocate a body.

The body doesn’t care what time the watch says – it’s still ticking on internal time.

When travelers are on vacation, they may choose to sleep off the brain and body disorientation.  When they travel for business, they don’t have that luxury.

Going East

When business travelers fly from California for a conference or business meeting in New York, the three hour time difference means that when it’s time for the New Yorkers to hit the hay – for example, a relatively sensible 11:00 pm — the Californians aren’t sleepy, even following a few drinks at the meet-and-greet that most event planners schedule for the first evening of a business meeting.

  • It’s only 8 p.m. in California, so suddenly transplanted California bodies and brains insist that it is far too early to go to sleep. Even though the businessmen and women understand intellectually that they are in New York where it is three hours later, they still can’t sleep! So maybe they watch TV or read until their bedtime in California —  a relatively sensible 11:00 pm. (Oops. That’s 2 AM in New York.)
  • When the alarm goes off at 6:00 the next morning for that whose-bright-idea-was-this?! breakfast meeting, their bodies and brains, still on California time, react as you would expect them to at 3:00 in the morning after only four hours of sleep. Groggy!
  • None of the processes set by the body clock have been able to adjust that quickly either, so everything is off kilter. No wonder they feel tired and mentally slower than normal until noon or later. There’s only so much caffeine can do!

Fortunately, for most people anyway, the body clock will reset within a few days when, for most business travelers, it is just about the time they will have to do it all “backwards.”

Going West

  • Even the road warriors, that first night back in Californa, will collapse into bed when it’s bedtime in New York, NOT bedtime in LA — about three hours earlier than usual, because their bodies and brains will insist that it is three hours LATER than it is to their families who have stayed in the same timezone the entire time.
  • Most of the travelers will be struggling to keep their eyes open long before that, because they will have accumulated some serious sleep debt during their adjustment period to the body-crazy hours of that New York City conference relocation.

It doesn’t take too many successive trips back and forth before their poor body clocks are totally confused, sleeping at times that the people who stay put think are crazy — pretty much the experience of those of us with chronorhythms disorders.

AirPort_sleepingABOUT Chronorhythm Disorders
the problems behind wonky sleep TIMING

According to the National Institute of General Medical Sciences [NIGMS]:

“Circadian rhythms are physical, mental and behavioral changes that follow a roughly 24-hour cycle, responding primarily to light and darkness in an organism’s environment. They are found in most living things, including animals, plants and many tiny microbes.”

The study of circadian rhythms is called chronobiology, and scientists who study circadian rhythms are referred to as chronobiologists.  So, it makes perfect sense that circadian rhythms are frequently referred to as chronorhythms

Whatever you want to call them, they’re what makes it possible for our brains and bodies to work together to navigate our inner and outer worlds.  But what do we KNOW about them? 

A LOT, it turns out, although not nearly enough, so this article will consist of several parts, as equally divided as makes sense without ending abruptly in the middle of a point.  So let’s get started.

Tic-Toc, the Master Clock

In humans, as in most living organisms, circadian rhythms are controlled by what is often referred to as the “biological clock” — which actually consists of the coordination of various mechanisms throughout our entire bodies.

  • The “master clock” in the human brain –  the coordinator of these various bodily processes that, together, make up the biological clock – is located in a specialized an area within the hypothalamus, just above where the optic nerves from the eyes cross.  That master clock is known as the suprachiasmatic nucleus, or SCN.
  • Researchers tell us that circadian rhythms are “set” in reaction to a genetic component; they have identified genes that direct circadian rhythms in humans as well as other life-forms commonly used for genetics research (like mice and fruit flies — even fungi, which are more closely related to the human genome than most non-scientists realize).
  • Circadian rhythms are influenced by signals from the environment, especially light cues, which turn the genes that control our internal clocks on or off.  In addition to sleep-wake cycles, circadian rhythms influence – and are influenced by – hormone and neurotransmitter release, core body temperature, and other functions.

It’s ALL in the Timing!

timing-beltYou may already know that abnormal circadian rhythms, or chronorhythms, result in various sleep disorders and seasonal affective disorder.

But you may not be aware that they have also been linked to physical effects like obesity, diabetes, heart and asthma attacks, as well as mental health dysregulations like bipolar disorder and depression (and more).

Ask any good mechanic what happens to a car when the timing belt remains off kilter.  After a while it becomes tricky to follow the chain of cause and effect, but the rest of us can see what WE think is wrong with the vehicle — it won’t run.

Sleep timing disorders are a bit like that.

Off-kilter sleep-timing chronos are extremely easy to notice, and obviously not working correctly, but they’re probably not the underlying problem with our physical vehicles.  We simply need a few good mechanics to help us figure it out so we can FIX the timing.  Anybody know any?

Circadian rhythms and sleep

As we learned in an earlier article, Sleep Timing Disorders and LIGHT, research has strongly indicated that exposure to LIGHT influences human gene expression, hormone secretion, body temperature, heart rate and blood pressure  — as well as cognitive alertness, and sleep.

Due to its proximity to the optic nerves, the SCN receives incoming light/dark information rapidly, which influences the production of melatonin as well as other hormones which, in turn, determine how we function (or don’t!)

  • So, the SCN is said to “control” the production of melatonin, that hormone that counteracts our alerting mechanism, allowing us to sleep. As light grows dimmer, melatonin production increases and we get drowsy.  At least that is how it’s supposed to work.
  • The body’s suppression of the secretion of the hormone Melatonin in the presence of light – which is fairly easy to measure – is considered a marker of circadian sensitivity.

In the October 2009 issue of Trends in Cognitive Neuroscience, Gilles Vandewalle (Center for the Study of Sleep and of Biological Rhythms at the University of Montréal) noted that light exposure also reduces alpha, theta, and low-frequency brain-wave activity — all associated with sleepiness.

  • Since that time, non-sleep specialists and clinicians seem to have accepted the probability that appropriately timed light exposure will have positive effects on our physical and emotional health, as well as helping us to stabilize our sleep timing within the light/dark cycle of our planet, so that we can be alert in the daytime and sleepy at night.
  • The problem is, it simply doesn’t work for some of us.

We need more RESEARCH to understand why.

More than mere shut-eye

While we generally relate circadian rhythm struggles to problems with the sleep/wake cycle, there is a circadian cycling of hormones, body temperature, alertness and productivity, even appetite.

There are more than a few measurable biological markers entrained to the circadian cycle, usually corresponding to the sleep/wake cycle which, if we’re lucky, corresponds to nature’s light-dark cycle.

For example, in a sleep-normal individual:

  • Bodily cortisol levels, that steroid hormone produced by the adrenal gland, are highest around six to eight in the morning, helping you wake up, with the lowest levels at about midnight, after which they slowly begin rising again.
  • Core body temperature is at its highest in the early afternoon and evening, slowly beginning to fall at the onset of darkness in preparation for sleep (in concordance with cortisol production). It reaches a minimum only a few hours before awakening, when it begins to rise once more, helping to signal the body to awaken.

Core body temperature is strongly correlated with alertness.
In lab tests, peak efficiency seems to occur when core body
temperature is its highest [Kleitman, 1963].

  • Melatonin secretion begins to increase about two hours before bedtime, in response to dim light, bringing on the feeling of drowsiness. It remains high during the night, and begins to decrease toward the end of the sleep period, as morning approaches.

Those of us who have trouble with appropriately timed alertness and sleep are believed to be experiencing the effects of a dysregulation of one or several of our circadian rhythms, or chronorhythms.

Where stable sleep architecture is concerned, science is unclear which of the processes above are chickens and which are eggs, but they know that the timing is off.  Something ELSE, however, might be going on under the surface.

We’ve simply never had enough RESEARCH to know WHAT.

First-hand from a Chrono-expert

ChronosYouTubePeter Mansbach, Ph.D., fellow sleep-struggler, founder and current president of the Circadian Sleep Disorders Network, delivered an extremely informative presentation to the 2013 Narcolepsy Network Conference.
(My gratitude to delayed2sleep for making me aware of it)

Peter’s presentation offered a marvelous introduction and comprehensive overview of Circadian Rhythm Sleep Disorders [CRSDs] — in particular Delayed Sleep Phase Disorder and Non-24-Hour Sleep-Wake Disorder.

He outlined the latest research and treatment protocols, as well as shining a light onto some of the similarities of the challenges of both narcolepsy’s excessive daytime sleepiness and circadian struggles, suggesting the possibility (I would say probability) of misdiagnosis or double-diagnoses across the board.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Possible Causes of CRSD Clock Malfunctions

Peter believes there are several different abnormalities potentially underlying Circadian Rhythm Sleep Disorders [CRSDs].

These may include (from his presentation):

  • lack of sensitivity to light
  • over-sensitivity to light
  • long intrinsic circadian period
  • lack of melatonin production
  • long elimination time of melatonin
  • deficiencies in the light-sensitive ipRGC [melanopsin] cells of the retina
  • long time from core temperature minimum to wake up time
  • differences in tolerance to phase mismatch, etc.

In the Related Content links below you will find links to the YouTube video of Mansbach’s presentation, download link for the text of his presentation, and a link to another place to view all of the slides.
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TWO more Possibilities Regarding Light

Dopamine

As I mentioned in an earlier article in the Sleep Series, Sleep Timing Disorders & More Laws of Photobiology, dopamine appears to be a factor in the regulation of melanopsin,* recently discovered to be a factor in entrainment to natural light/dark rhythms.

According to a number of studies, melanopsin-containing ganglion cells contribute to various reflexive responses of both brain and body to the presence of daylight.

  • Dopamine, many of you will recall, is one of the neurotransmitters whose bioavailability is increased by the stimulant medication prescribed for ADD.
  • That might offer more than an explanation for the repeated assertions of many ADDers (myself included) that their quality of sleep is improved by stimulant substances that keep so-called “neuro-typicals” awake.  Stimulants increase dopamine bioavailability.
  • Faulty dopamine regulation might ALSO lead to a clue about what is going on with chronorhythm destabilization and chronic failure to entrain, which may or may not be connected to my next potential causal explanation.

—————-
*[Sakamoto K, Liu C, Kasamatsu M, Pozdeyev NV, Iuvone PM, Tosini G. Dopamine regulates melanopsin mRNA expression in intrinsically photosensitive retinal ganglion cells. Eur J Neurosci. 2005; 22: 3129–3136.]

Another possible problem with LIGHT

To Peter’s list of potential causes relative to light sensitivity, I would also like to add “misinterpretation” of light cues, similar to the underlying problem of the struggles that Helen Irlen found in children whose brains didn’t “translate” what their eyes were actually “seeing” correctly.

  • What most of us might “see” as a page of text, for example, those children might experience as words dripping off the page as they attempted to focus on them, or “rivers” formed by the spaces between words overtaking the focus on the words themselves, even though there was nothing physically wrong with the children’s eyes.
  • They were finally able to read with the help of colored overlays or lenses that “bent” incoming light so that the way in which it reached the brain changed in a manner that “corrected” the neuro-interpretation.
  • In many instances, behavioral and additional cognitive and perceptual alterations have also been found to correct themselves practically immediately upon the use of person-specific colored filters.

It seems plausible to me that a similar “misinterpretation” of light cues might interfere with appropriate entrainment to earth’s light/dark cycle.

But Nobody Really Knows

Since N-24 has been studied, for the most part, in blind populations, who cannot entrain to light cues they cannot see, Science has NO IDEA what might underlie the disorder in individuals who can.

Non-24 has been found to affect over half of totally blind individuals, which means at least 75,000 Americans, according to Peter. But until science looks at all potential causative elements in the ENTIRE range of the affected population, they may well be incorrect about the underlying cause in the blind population as well.

As science is so fond of saying, “Correlation does not prove Causation.”

WE NEED MORE RESEARCH!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Unfortunately, and inaccurately, it is typically reported in a manner that makes it appear that both the sighted and non-sighted populations have been looked at equally, and that it has been determined, following investigation, that N-24 is rare in sighted individuals.

In my experience, it’s NOT so unusual, actually, which they could – and probably would – discover if they’d only take the time to take a thorough look!!

Remember that probability as you read on various, otherwise credible, sleep sites that N-24 affects primarily the blind. Although it is true that it is DIAGNOSED primarily in the blind, the members the NiteOwl chat list – and I, myself – beg to differ with the former assertion!

That’s yet ANOTHER good reason why I urge everyone reading to become a member of the Circadian Sleep Disorders Network to support their lobbying efforts to bring public and scientific awareness to a problem that has been shamefully disregarded for many decades.
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Coming up in Part II — we’ll begin to look at some of the similarities and differences between the various chrono-disorders, what it’s like to live with them, and some of the things you can try that might make life a bit easier if you are one of the folks attempting to do so.  So stay tuned!

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About Madelyn Griffith-Haynie, MCC, SCAC
Award-winning ADD Coach Training Field founder; ADD Coaching field co-founder; [life] Coaching pioneer -- Neurodiversity Advocate, Coach, Mentor & Poster Girl -- Multi-Certified -- 25 years working with EFD [Executive Functioning disorders] and struggles in hundreds of people from all walks of life. I developed and delivered the world's first ADD-specific coach training curriculum: multi-year, brain-based, and ICF Certification tracked. In addition to my expertise in ADD/EF Systems Development Coaching, I am known for training and mentoring globally well-informed ADD Coach LEADERS with the vision to innovate, many of the most visible, knowledgeable and successful ADD Coaches in the field today (several of whom now deliver highly visible ADD coach trainings themselves). For almost a decade, I personally sponsored and facilitated seven monthly, virtual and global, no-charge support and information groups The ADD Hours™ - including The ADD Expert Speakers Series, hosting well-known ADD Professionals who were generous with their information and expertise, joining me in my belief that "It takes a village to educate a world." I am committed to being a thorn in the side of ADD-ignorance in service of changing the way neurodiversity is thought about and treated - seeing "a world that works for everyone" in my lifetime. Get in touch when you're ready to have a life that works BECAUSE of who you are, building on strengths to step off that frustrating treadmill "when 'wanting to' just doesn't get it DONE!"

39 Responses to Up all Nite? Sleep away the Day?

  1. Sharing…

    Liked by 1 person

    • God bless – I truly appreciate it.
      xx,
      mgh

      Liked by 1 person

  2. The doctors in the Pain Medicine Clinic where I used to work would prescribe melatonin for sleep disorders and also a light box for SAD syndrome sufferers. It’s also true that we need less sleep as we get older. I’m finding that I feel better after 6 hours sleep rather than 8, which tends to make me feel sluggish all day.

    Like

    • SOME of us need less. Stevie. Others actually need more as they grow older (me, for example). I can no longer count on awakening naturally after the 8 hours that were my norm for decades. I’m jealous of your six – lol – I would LOVE to have more awake time in which to accomplish my objectives.

      I hope those doctors in your Pain Clinic are well-informed about the melatonin dosage. It turns our that [much] “less is more.” Some docs up the dosage, thinking that it will “last” longer. Not so. Newer pills have a delivery system that pumps half the dose to help with sleep onset, then “refreshes” it half-way through the night. MUCH better for chrono-regulation. I really need to move drafting that melatonin article UP on my to-do list!
      xx,
      mgh

      Liked by 1 person

  3. lifelessons says:

    I had forgotten this old song. My sister was one of those who could have slept her life away. Your equating having difficulty waking up to those who cannot stay awake and retire early was right on.

    Liked by 1 person

    • Thanks, Judy. My sympathies to your sister. Did you know that there are actually disorders where folks practically DO “sleep their lives away?” At the other end, there are disorders where people actually die because they can’t sleep at all.

      Both are rare, of course, but science still has little understanding about what’s going on. Sleep is finally getting more respect (and research funding), especially now that NASA is planning the Mars mission, but sleep is still severely under-researched, especially considering it comprises 1/3rd of the lives of MOST of us!
      xx,
      mgh

      Liked by 1 person

      • lifelessons says:

        It is amazing.. like a retirement period that eats up 1/3 to 1/4 of our lives.

        Liked by 1 person

        • I think science will eventually discover even MORE about why it is time well spent – and perhaps that it is the most important part of our lives in these bodies of ours.
          xx,
          mgh

          Like

      • lifelessons says:

        But, I really do think it is a chance for our right brain to communicate with our left brain or our logical brain to connect with the Universal Unconscious.

        Liked by 1 person

        • Science would agree with point #1 for functional reasons — I tend more toward #2 personally. 🙂
          xx,
          mgh

          Like

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  5. I am very grateful that I have never had a problem sleeping. Last August when we went to New Zealand my whole family had very bad jet lag. It is a 10 hour time difference. Michael was up at 12am two night in a row and I never slept past about 3am during our entire 10 day holiday. I was finished when we came back but it was much easier for me coming back.

    Liked by 1 person

    • LUCKY you, Robbie – guard that ability carefully. It is easier than most people realize to mess up their chronorhythms long-term and MUCH more difficult to get back on phase than anyone ever suspects.

      I was born dysregulated – always “an extreme owl,” even though my parents made me go to bed at 8pm until I was 12 years old. I was almost always still awake, staring into the dark, when I heard them finally go to bed – usually after midnight. I used to joke that, since I was born at an Army Base in California, that I was calibrated to West Coast time – even though I only lived there for the first 18 months of my life before my family headed East.

      Your August trip sounds like it wasn’t as wonderful as it might have been, had you had more time to “reset” so you were well-rested for more of it. Nobody ever really understands the trouble with Jet Lag until they’ve personally experienced a trip like yours. I’m surprised that Michael’s struggle getting sleepy only lasted 2 nites – but I’m sure you had him well regulated at home, and I’ll bet that’s why. How long did it take you to get back on phase when you returned home?
      xx,
      mgh

      Liked by 1 person

      • I am really lucky, Madelyn. I can usually sleep any place, any how and any time. I can sleep on buses and in cars so I did cat nap while in New Zealand which helped. It took me about 3 days to readjust once back home but, strangely, my husband adapted quicker than I did going but took nearly 10 days to adapt coming home.

        Liked by 1 person

        • That IS unusual, which leads me to suspect a sleep disorder that was ameliorated by the time change for him – and sourced his struggle “re-adapting” to the chronorhythms of the time zone where you live.

          I’m lucky too in that the vibration of buses and cars (and planes) lulls me to sleep as well – true of many infants, btw. – to the chagrin of many parents. 🙂
          xx,
          mgh

          Liked by 1 person

          • Terence has problems sleeping. He struggles to sleep in strange places, doesn’t sleep on planes, trains and automobiles [unlike me]. He had to take sleeping pills at one time. I loved the fact my older son, Greg, fell asleep in the car. He would be all fresh when we got home and we could play together. Mike suffered from car sickness and he was a nightmare while driving – screamed his little head off. He gets air sick too. Lots of food for my writing [smile].

            Like

            • Poor Michael – and you guys, having to listen to his discomfort, helpless to change things for him. Your positive attitude about it all is truly admirable, Robbie.

              My heart goes out to Terence as well. I have no trouble sleeping once I am asleep, but the transition from waking to sleeping is frequently a struggle, so I can relate. People who are what I call “sleep normal” truly do not know how fortunate they are.
              xx,
              mgh

              Like

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  12. I am hanging and crashing hard so I need to sleep, but be prepared. You will be getting a full message from me tomorrow 🙂 Was a VERY good read!!

    Sweet dreams xx Louise

    Like

    • Don’t overshoot your “sleep window” — you’ll be up for EVEN longer. I am looking forward to what else you have to say, but I can wait.

      PUT YOURSELF TO BED! (do what I say, not what I do?)
      xx,
      mgh

      Like

      • I’m Back!

        “Life get’s lonely” so incredibly and regretfully true. People really don’t seem to understand how hard it is, trying to force them to go to bed in the afternoons mid process could actually be a very good way to show them. The amount of times I have had to explain to my parents that I just can’t sleep is becoming ridiculous. But they just don’t understand as I appear tired most of the day, or I am easily fatigued. One of those things I ask them to blindly accept that they do not understand!

        I have heard of the biological clock before but I did not know much about it at all so reading your writings about it was very interesting. Something I have always been interested in, how our brains and body’s work. “exposure to LIGHT influences human gene expression, hormone secretion, body temperature, heart rate and blood pressure — as well as cognitive alertness, and sleep” pretty sure my therapist has said this to me. Also how Morning light is different to afternoon or evening light which causes a high reaction to the light, making you ‘wake up’. That is why it s easier for people to get up in the summer than the winter.

        “It seems plausible to me that a similar “misinterpretation” of light cues might interfere with appropriate entrainment to earth’s light/dark cycle” In that paragraph you mentioned using coloured overlays to help read, I have had to do this a lot – especially in exams as my eyes struggled to focus. I never even thought to think it could be linked to what you are explaining. It makes perfect sense now that I have read this post though, it all seems to add up a little cleaner. 2+2=4 rather than 2.6+1.3=3.9 for example. I was never good at Maths so I like it clean and basic haha.

        We really do need more research! But your posts are a very good way in. I really like how you process all this information and throw it back so nicely worded and laid out on the blog. I will most certainly check out the link for the Circadian Sleep Disorder Network and look at becoming a member, thank you for sharing it 🙂

        Once again a great read!! I will be getting through another one soon. I think I have learnt more from reading your blogs than the doctors I have been seeing over the past year!!

        xx Louise

        Like

        • NOTE: if you get here before the links I’ve mentioned below “click” come back later — I have to go to a different screen to add them — btw, they ALL will be set to open in a new window/tab (depending on your browser settings), so close that window when you’re done and this will be right where you left it.
          —————————————
          I swear Louise, I don’t know whether it is a GOOD thing or truly rotten that we don’t live next door to each other (or at least in the same time zone!). 🙂 We would probably NEVER stop talking ideas and theories!

          We tend to have similar observations and glom onto the same “pieces” of what we observe. We also seem to have a similar way of “feeding back” what we think. (i.e., “I really like how you process all this information and throw it back so nicely worded and laid out on the blog.”)

          If I were currently training ADD Coaches I would bully you into it! You would be AMAZING (but don’t even think about training with anyone else!! — if you *ever* get an itch to do that, talk to me first.)

          Really, I’m not kidding! I’d HATE to miss “watching” you light up as you make your own connections to what you would be learning — *and* I think you, in particular, would “fit” with the way I believe coaches for the neurodiverse NEED to be trained to be able to expand the knowledge personally (so that they can do so-much-more than what I call “cookie cutter coaching” – which has its place, just that there IS so-much-more we can do for folks.)

          NOT selling, btw – as I indicated, I’m not doing that right now — and I’m not sure when, if/whether I will do THAT or something else with the next “chapter” of my life. The mugging gave me way too much time to think about the rest of my life – and I’m still thinking 🙂
          (Talk to me first anyway, *especially* if you EVER decide to train elsewhere!)

          I LOVED your comment, “I think I have learnt more from reading your blogs than the doctors I have been seeing over the past year!!” NOT overstating this: my students had the opportunity to know more than MOST doctors l-o-n-g before graduation — as long as they kept up, did their homework and participated in class. (see Cindy’s comment following “Top Ten Stupid Comments Made by [supposed] ADD professionals”) <==link to Cindy’s comment.

          As you may be figuring out from what I am sharing on ADDandSoMuchMore.com, there are SO many pieces to an extremely complex puzzle and they are ALL interconnected (like the brain itself). It has kept me busy for 30 years now, attempting to put it all together to the extent that I have.

          If I could begin again, and could somehow make it through statistics (!), I would go into one of the "neuro" fields — and I’m actually considering attempting a doctorate, btw (I’ve got more than a few good years left to use it, if I could figure out a way around the sleep-timing thing!)

          Meanwhile, I do my best (and spend a ton of time) attempting to streamline a GREAT deal of background info for others BUT, as you have no doubt observed for yourself – my posts are generally much longer than the average blog article, and on A LOT of different (but connected) subjects.

          Few people who CAN read have the patience for reading anything longer than a tweet anymore, more’s the pity – and quite a few ADDers struggle with staying tracked, so it’s really frustrating for them, no matter how I “chunk” the info with formatting.

          If I had funding for a someone to handle all the admin, I’d READ every single post and add a “podcast” to each one.
          So much I want to do, but I run out of time long before I run out of ideas. 😦 (really, I need a STAFF!!)

          LOL re: maths (we use it without the "s" here in the states) — not my strength either. Words, concepts and interconnections are my areas of brilliance – holographic, not linear like numbers (or graphical representations).

          I can't seem to be able to do even what I call "dinner math" reliably (how much is my share of the check, tax and tip?) — even when I use a pencil and paper ::groan:: I am almost completely dyscalculate (and don't "grok" what most of the "universal" symbols are trying to tell me not to do!)

          Arithmetic is the big challenge, actually. The logic of higher math makes perfect sense, as long as it stays x and y and I'm not expected to come up with a NUMBER I do fine. Numbers are like Sanskrit! My brain stumbles over the translation every darned time, nor do numbers "stick" in my head like they seem to do with others.

          I can't even recall my own street address half the time — or even my AGE! since it keeps changing. If it's important I give folks my birthday and say, "you do the math!" (Since I was born near the END of the year, unless it is December, I’ve discovered that most people get it wrong anyway – not that it matters to ME!)

          I also have to keep a check on my bulletin board so that whenever my credit card is rejected for an internet purchase I can fix it by putting the RIGHT darned number in the address field. Hateful! (sometimes my "link==>challenges" make me feel r-e-a-l-l-y stupid! 😦 )

          RE: "One of those things I ask them to blindly accept that they do not understand! "

          Welcome to *my* life. I have spent the last 25+ years trying to explain things to those with what I call "vanilla" processing — less complicated by what I refer to as the "mix-ins" of the neurodiverse. (like the ice cream shops add mix-ins to flavor vanilla ice cream). VERY few ever actually get it – thus Listen from Belief <== link. (There’s a follow on, HOW to Listen from Belief <==link) — but it's geared more to couples/relationships.

          As long as your parents are willing to do that – and to TRY to understand – you are one lucky lady. You would not BELIEVE the make-wrong that many of my clients and students have had to endure!

          btw – since meeting you, I have been taking a closer look at what the relatively unknown, underpopulated & still fairly unappreciated field of Affective Neuroscience has to say about depression, to see if I can lead you to some info that might help you make sense of what you are thinking and feeling.

          It may be a while before I have assimilated enough of the latest info, formed some coaching theories and written it for public consumption on the blog – but know that I AM working on it.

          Jaak Panksepp, "the father of affective neuroscience" is your best resource there (a field pioneer who wrote the first and best textbook) — light years ahead of the rest of the field. LOVE the guy. If you want to play too, google him – and start listening/watching podcasts and videos to hear him explain things in his own words.

          He's an academic, so the "denser" talks are where the real goodies are – I have had to wade through a number of "lighter – for the general public" sharings to get to the really valuable insights (IMHO).

          Another long one, sorry! — gotta' run!
          xx,
          mgh

          Like

  13. SLEEP is the number one chronic problem with all types of brain dysfunction yet it’s minimized and understudied. Sleep deprivation keeps us from functioning at our optimal level. Unlike those with childhood ADD, ADHD that includes sleep deprivation for a lifetime … it’s new for those with brain injuries and they again have comparison (before and after injury) and I’m certain that at some point we’ve all felt others were lazy if they stayed up all night and didn’t get started till late in the afternoon. Maybe this is the lesson we are here to learn how different everyone is, how complex our bodies are, and how strong our minds can be to survive even the unthinkable!

    I’m going to reblog this since EVERYONE with brain injuries, chronic illness and injuries endures and you have provided many others articles as resources to help others understand what is happening. I want to reblog it next week so it’s not too much at one time. Of course, understanding is far from fixing the problem but maybe in some way we can all take control of the situation and fit the pieces and parts for our own unique situation and solve our own sleep deprivation problems as much as we can … or simply adjust and adapt while the rest of society keeps requesting everything from us as though we were “fixed”, and “need” to follow whatever is expected as “normal” … or “nuts”!

    Most importantly, How are you doing? How is Cindy? I know you are overwhelmed with so much to do when you are at your worse … and expected to do it!!! Please take care of yourself and let us help you too. We can do a road trip to help you. I’ve sent a text message but you might not have your cell up yet … or you might not be up to figuring out a new telephone when you are just trying to get through a second, one minute, one hour, one day, one week and a month at a time! What are your current needs? I keep my telephone on silent simply because of distractions and overwhelming feelings but I do return calls if I don’t notice the incoming calls … and of course screening is an essential process to eliminating further demands of nonsense stuff in life!

    Your health and safety is ALWAYS a priority. Take care and stay safe.
    Edie

    Like

    • PLEASE forgive me, Edie — somehow I missed this comment in my “notifications.” (it must have come in on a day when there were a lot, you got “pushed off the screen” and I failed to click to the archive. I JUST found it.

      My phone situation has been a total nightmare — I also only JUST got my “old” number up and working, connected to my replacement iPhone that I *finally* got working, thanks to a “genius” at the Apple Store (3 months+ since I was mugged and my brand new, barely connected iPhone was stolen along with everything else).

      As it turns out, the voicemail on my “old” number had been “up” all along, but I couldn’t get TO it!! Almost 30 voicemails (and even more texts which I don’t DO — I call!) the moment it was registered correctly so it could be turned on. (no wonder I was getting so many “did you get my message” comments!!)

      Still wading thru – and waiting for the arrival of a stylus so I can USE the darned touch screen reliably (wouldn’t you think Apple or SOMEBODY would stock them in local stores?) WELL behind on tech-updates, this is my first “smart phone” and first touch screen, so the learning curve is a bit steep JUST to use a telephone – and the touch screen is giving me FITS!

      My finger keeps hitting the wrong keys, thanks to long fingernails maybe, but I am not ABOUT to cut them to the quick on a maybe. So it’s been tough trying to figure out how the darned thing WORKS! And then, of course, every returned call takes a ton of time to explain and catch up – and there goes ANOTHER day with undone to-dos! (all in good time?)

      Don’t even ASK
      about my troubles with the (older technology) “burner” phone I bought in an attempt to get me through meanwhile — don’t EVER buy a cheap temp. phone — the darned thing eventually rolled over and DIED, but it took me quite some time to realize how badly it had been “limping” all along!! (grrrrrrrrr – technology!)

      My hand is recovering nicely – as is my cognition – thanks for asking. NOW if I could say the same about my LIFE I would be a happy camper.

      You NAILED it with the following: “trying to get through a second, one minute, one hour, one day, one week and a month at a time!” (I can always count on YOU to understand – and I SO appreciate it).

      I am SO touched by your “road trip” offer – as if you weren’t struggling with enough ALREADY. Are you in Michigan or Ohio these days?

      I hope all is well with you – but I suspect, given your lack of blogging activity of late, that you are struggling with some new wrinkle yourself! I am in a space where I can listen, btw — maybe even HELP, so please don’t hesitate to call (865 areacode – regular ## again).

      I’m exactly like you with handling the phone to minimize distraction potential, btw – but I WILL call you back.

      I am close to coming up for air on some “must be done NOW” things, so when I get there I will ring you.

      MUCH love to you — take care of yourself.

      xx,
      mgh

      Like

  14. Alex Yule says:

    thanks for sharing this article. I really like to read it and also enjoy the illustrated images too.

    Like

    • Thanks Alex – and thanks for taking time to read and to leave me a comment letting me know that your were here.
      xx,
      mgh

      Like

  15. busydarling says:

    Haven’t read the entire article: night shift brain. I’ve been diagnosed with ‘sleep disorder linked to circadian rhythm.
    I’m not so certain about that though. My problem is not being able to slow down when it’s time for bed:ADHD mind keeps racing.
    When I go to bed too late, I need a full hour to become awake. When I go to bed on time, I am awake within half an hour with the same amount of sleep. MY best time is during the afternoon.
    My ideal rhythm means going to bed just before midnight and getting up at 8-ish.

    Northern European winters and summers are completely screwing with me. I spend all winter tired because it’s dark and my body think it’s almost time to go to sleep. I spend all summer battling the jet-lag caused by the late sunsets, worsened just beyond Ok-level by daylight savings.

    Like

    • BOY do I understand your complaints. I despise Daylight Savings time. Sends me reeling for at least 3 weeks twice a year.

      Sounds to me (“not a doc” disclaimer here) like you have some entrainment issues (which is a chrono), but doesn’t sound like DSPS to me either – and CERTAINLY not N-24 — nor does it really sound like Shift-Work Disorder either.

      If you finish the article you can’t miss my repeated point – WE NEED MORE RESEARCH – because nobody really understands what’s going on – and too many doctors are even aware of the EXISTENCE of Chrono-disorders, much less enough info for a differential dx.

      The comments add content – and you’ll notice that there is some disagreement about what’s going on. NOBODY really knows, and each of us who suffer generalize from our own realities.

      It’s a crap-shoot, at this point, what will shake out (eventually) – but my money’s on my dopamine dysregulation negatively affecting entrainment via flakey melanopsin response (of course I WOULD think that, since I put that 2+2 together, but it could be any or all of the others too).

      In the end, causation only matters if it can lead to effective treatment protocols – which is my stake in the game. If you’ve read JetLagged you’ll understand why. And it seems to be getting more difficult to manage each month now – NO stabilization AT ALL currently, so I can’t even make an appointment with any assurance I’ll be awake for it – night or day. (I can usually count on being awake most nights, but not currently — all over the map).

      Vanda Pharmaceuticals is coming out with a new drug for N-24 – first ever, I’m fairly certain — but I don’t know if non-blind can get it, how much it will cost, when it will be available, mechanism of action, or IF it will even work. That was one of the trials I couldn’t join because one had to be blind, btw.

      I’m not even clear where they are with approvals, but there have already been “pending” announcements (I think I linked to a few – can’t see article or your comment from this screen). Will spend some time researching after Thanksgiving weekend.

      Gotta’ run – doing Thanksgiving with Peggy’s blended family, and she is waking me early so I don’t sleep through it. Hoping to get SOME sleep before that happens.

      THANKS for reading & commenting – as always – and Happy Thanksgiving (even tho’ I doubt you celebrate it in South Africa.)
      xx,
      mgh

      Like

  16. Lawrence Barton says:

    Madelyn, you seem to take after your father, you seem very bright like he was. Cousin Larry.

    Like

    • WOW – Happy Birthday to ME (11/29, btw). Are we really “cousins” or am I piggy-backing unconsciously on my [link==>] Brandy musings article?

      Did you KNOW my father? I am really trying to get some closure, attempting to sort through a confusing “reality” – even knowing that it is ALL perception and that reality is, in fact a personal illusion.

      FACTS are stabilizing, however! If you ARE a cousin, can we talk?

      Either way, thanks so much for taking the time to comment (and for concluding that there is a high level of intelligence underlying an often flakey exterior) – and happy Thanksgiving.

      xx,
      mgh

      Like

  17. “Since N-24 has only been studied in blind populations, who cannot entrain to light cues they cannot see, Science has NO IDEA what might underlie the disorder in individuals who can.”

    Not the case, N24 was first studied in sighted people and has almost exclusively been studied in sighted people. Despite there allegedly being more blind people with N24 than sighted people, N24 in the blind has been far less studied.

    Like

    • THANKS for this comment – I count on readers to keep me on my toes, *especially* when comments do not reflect what my research has revealed.

      If my information turns out to be incorrect, you can count on me to change my assertions and back-edit my articles. (I HAVE edited the article above to replace the word “only” – which I agree IS a hyperbole.)

      Can you lead me to citations for the sighted studies for N-24? I have found quite a few studies of DSPS in the sighted (now DSPD) – which seems to ignore the problem in the blind, for the most part, but *few* studying N-24 in the sighted population.

      My “NO IDEA” assertion, by the way, comes from my strong statement at the end of the article:

      “. . . until science looks at all potential causative elements in the ENTIRE range of the affected population, they may well be incorrect about the underlying cause in the blind population as well . . . “Correlation does not prove Causation.”

      I haven’t been able to locate evidence that they have really “looked.”

      I have been politely turned away (or unresponded to) when I have attempted to join a study — and the ones I have located in time to apply were studying blind populations and/or would have required [uncompensated] travel and temporary relocation I could not personally fund.

      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
      I understand that researchers are between “the problem” ROCK and the “dearth of available funding” HARD PLACE as well, but I doubt that will ever change unless we all are willing to state the obvious: we don’t have adequate RESEARCH. Rattling a few cages might shake loose a few sheckels for some!
      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

      I also agree that there has been FAR too little research into the blind population *either*(even Vanda’s recent Tasimeltion trials were small, relative to the size of the population), but the numbers I have found reported for sufferers who can see seem laughable to me.

      The implications of the life-long sleep and sleep-disorder research of Stanford’s Dement (over 80 years old now) have been, for the most part, given little more than a polite nod by far too many.

      Foster’s TED talks have increased the visibility and importance of sleep research, but I haven’t found much there exploring or expanding upon his fascinating chrono-research book Rhythms of Life (nor have I met many who have read it).

      Peter Mansbach said in his presentation to the 2013 Narcolepsy Conference that he knows of 50 sighted N-24 sufferers personally.

      I have participated in chat-lists over the years where the numbers were larger. During my own list-participation time, none of these individuals ever “chatted” about being included in a study (or the invite to do so – or being aware of a call for participants), yet more than a few reported what they were told about “poor sleep-hygiene and insomnia” following a night in a sleep lab or a visit to a sleep “specialist.”

      If I were going to do a DSPS/N-24 research project, I’d have no problem posting notification and calls for participants where a great many in the sighted population would be likely to SEE them. Yet what I’ve read seems to indicate that study authors have searched the world and found that we were very few.

      My language is STRONG, I’ll grant you that.

      I will turn 65 at the end of this week. I have suffered significant consequences from DSPS/N-24 for my ENTIRE life, which is unlikely to turn around suddenly at my age, supporting me in actuating my true potential. (I was, as I said in an earlier article, “the kid they had to WAKE for Christmas.”)

      Since I am a pioneer in the personal and professional coaching field, for most of my adult life I have been advocating for change (and more research for ADDults and those struggling with Sleep-Disorders), with careful “pull my punches” language consistent with coaching technique — which seems to have fallen, primarily, on deaf ears.

      One of my standards (first articulated many years ago as part of a training focused on mission/vision & purpose) is this:

      “I will speak to everyone in language as gentle as they can HEAR.”
      Implied is that I will continue to BUMP UP until I am heard.

      I have made the decision that, for the remainder of my time here on earth, it is time to step up my game and rattle a few cages — so that MAYBE I’ll see significant changes in MY lifetime.

      Thanks for reading and, again, for your comment – as well as for your own great site with valuable information about sleep and sleep disorders. Good work!

      xx,
      mgh
      ========
      READERS:
      check out his N-24 article from the Related Resources above, and click around his site once you get there. Interesting information there!

      Like

  18. Blind Non-24 and Sighted Non-24

    After posting [link==>] my Facebook “status” about Non-24 which included the sentence, in parentheses, (Among the blind it has a different cause and is most often treatable.), I was asked to explain that. Here’s what I wrote:

    Normal, healthy people have a “day” that averages and is very close to 24.2 hours long. Normal sighted people (and also those of us with DSPS) automatically adjust this circadian period to exactly 24 hours. This is accomplished by light striking special light-sensitive cells (not rods, cones) in the retina.

    Some visually blind people still have functioning “intrinsically photosensitive retinal ganglion cells” (ipRGC) in their retina, and thus use light to adjust to the 24-hour day like most sighted people do. (In the literature, this process of adjustment is called “entrainment”.)

    Other totally blind people cannot make this adjustment through light and are not sensitive enough to other cues (social ones like alarm clocks and meal times) to make the adjustment. So their circadian cycle takes about the normal 24.2 hours. This requires a very small adjustment, which usually can be very successfully accomplished by taking a small amount of the hormone melatonin at exactly the right time of day, every day. These people do, formally, have Non-24, but it is not debilitating, especially since the treatment was discovered/devised.

    It seems obvious that sighted people with Non-24 must have another cause for their disorder, as their circadian cycle is much longer than the normal 24.2 hours. There has to be a neurological explanation for both N24 and DSPD.

    Some exciting research is happening. For example it has very recently been shown that people with Major Depressive Disorder (also) have faulty clock genes in their brains!

    When will such research lead to effective treatment for Non-24 and DSPS??
    _ _ _ _ _ _ _ _ _ _ _ _

    If you are interested in following up the “exciting research” bit about faulty clock genes in depressed brains, the paper by Dr. Jun Z. Li et al. at the University of Michigan is here:
    http://www.pnas.org/content/early/2013/05/08/1305814110.full.pdf+html
    TITLE:
    “Circadian patterns of gene expression in the human brain and disruption in major depressive disorder”
    ================
    MGH NOTE TO READERS:
    YOU can’t add formatting to your comments, nor can you edit your own comments after posting (sorry, I can’t change that), but as the blog owner, *I* can edit once you post.

    I don’t have time to do that for every comment, but where I have done so it is to direct reader attention or to highlight what I consider points so important I don’t want anyone to miss them!

    I also add “white space” to some comments — splitting long paragraphs of text into smaller ones so that those of you who must read “from rock to rock” to stay tracked can read the information.

    Other than correcting obvious typos I know you WOULD correct if you could, I do NOT change the words themselves – they remain the same as originally posted.

    Like

    • THANK YOU! You are an amazing resource and I am so grateful that that you spend some of the minutes of your precious life sharing the results of your own forays for information here on ADDandSoMuchMore.com.

      Since this is your second citation of this particular study (which I have downloaded but only skimmed), I think I need to move it UP on my personal reading list!!

      I HAVE moved the link to the content into the article – directly under the link to your your excellent N-24 FAQ document.

      xoxoxox,
      mgh

      Like

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