Chrono-Crazy: N-24 vs. DSPS


November 24th is
N-24 Awareness Day
Let’s take a closer look at
Sleep TIMING

© Madelyn Griffith-Haynie, CTP, CMC, ACT, MCC, SCAC
from the Sleep Series

Happy Belated Thanksgiving!
I hope everybody was awake for it.

Even as I typed the words above, I figured that many of you would think I was kidding – while others of you, sadly, weren’t “on phase” enough to be awake and alert for a joyful celebration.

Some of you may even have snoozed-on well past the time you were supposed to arrive for that Thanksgiving luncheon. And I’ll bet at least one of you reading slept the day away.

And I ALSO bet you catch a lot of flak from your “sleep normal” friends and loved ones about your screwy sleep schedule — even if you have been formerly diagnosed with one of the Chronorhythm Sleep Disorders and have attempted to explain your challenges with sleep a number of times.

At least that’s been true for me for most of my life.

What’s going on here?  (Sleep TIMING glitches!)

I’ve written quite a few prior articles about sleep timing, some linked in the Related Content section at the bottom of this article, with links to all of the articles available from my Sleep Linklist: Everything you ever wanted to know about Sleep.

As I previously explained in articles about CRSD (ChronoRhythm Sleep Disorders) and N-24 (Non-24 Hour Sleep/Wake Syndrome), there is a part of everybody’s brain that regulates body rhythms, especially sleep – the suprachiasmatic nucleus.

SEE: When Your Sleep Clock is Broken

That’s what makes some people Morning Larks and some people Night Owls – most of them only slightly skewed to one end or the other.

Even though many can adapt to the sleep timing expectations of their circumstances, they are only sharpest when their body clock tells them they are supposed to be awake and alert and when they are supposed to be drowsy.

And that’s why many of us struggle to fall asleep at “standard” hours — early enough to be fully rested before we have to get up to start the next day. Many of those strugglers suspect insomnia, but it has never been troubling enough to pursue a formal diagnosis.

Then there are those whom others consider “extreme larks” and “extreme owls” – most of whom, whether they realize it or not, are probably diagnostic for one of the disorders of sleep TIMING.

Some of those individuals have been MIS-diagnosed with insomnia when what’s really going on is that their brain’s clock isn’t set to support standard sleep timing!

Disorders of Sleep TIMING

Even though today is N-24 Awareness Day, this particular article is going to distinguish between N-24 (where a person’s body clock insists that the day is longer than the 24 hours that is relatively standard here on earth) and another disorder that is frequently confused with it: Delayed Sleep Phase Syndrome [DSPS] or Delayed Sleep Phase Disorder [DSPD].

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N-24 – Non-24 Hour Sleep/Wake Struggles

With N-24 (hypernychthemeral syndrome), the body-clock’s insistence that the day is LONGER than earth’s 24 hours (or so!) means that those individuals’ brains have been set to facilitate their falling asleep a bit later every single day — and awaken correspondingly later every single day.

In the absence of  chronic upheavals due to the expectations of the sleep-normal world, most of us can eventually track the length of our own individual “day.” That is important because it allows us to PREDICT when we will be awake or asleep, so that we can be reliable when we plan our schedules and set appointments.

  • But it usually doesn’t happen that one or another of what I call the “Sleep-Nazis” will leave many of us alone long enough to figure it out. Induced sleep-debt dominoes, and our schedules careen from one dysregulated day to the next.
  • Because, no matter how hard most of us try, we can’t do a lot to change our proclivities.  We struggle mightily to stabilize our sleep patterns, most successful with relatively strict mid-day wake-up times.

What that usually means is that most of us must live with mounting sleep-debt during periods of every single month, since we finally succumb to sleep at an increasingly later time every night.

Check out: You don’t Wanna’ Pay the Interest on Sleep-Debt

  • We are destabilized every single time somebody insists that we must awaken earlier because something is important to them that they insist simply must happen in the before-noon daylight hours – quite often those “breakfast meeting” ones!
  • Since I don’t awaken reliably to sound, that usually means I must stay up all night to make sure I don’t miss an early morning appointment. It can take me up to three solid weeks to restabilize – every single time.

Try explaining that to your landlord, a college admissions officer, or the courts — up to 21 days before you can be reliable again because they insist that they cannot accommodate a late afternoon appointment!

Check out MY story: Living with Jet-Lag: JetLagged for LIFE

Believe me, nobody wishes it were different more than those of us who are sufferers!  It makes life on earth extremely challenging.  It can result in a wide range of difficulties, including chronic problems with employment, school, family life, and socializing with friends.

What makes things more difficult still

“In my experience, the only difference between morning people
and evening people is that those people who get up
in the morning early are just horribly smug.”
~ Russell Foster, noted circadian neuroscientist.

The non-standard, longer-than-normal “day” of someone with N-24 inches around the standard clock.

We are able to drift off to sleep later every day, for the most part, only once our body-clock tells us our day is done.  So we come to a native state of alertness correspondingly later every day as well.

Eventually our sleep schedule inches back around the standard clock face to a time where we are “on phase” with the rest of our world.  And then what do we hear?

See, you can do it when you really try . . .
When it’s something you really want to do . . .
When it’s important to YOU!

Until we understand what’s going on, sometimes we even believe those ideas and beat ourselves up, wondering why we don’t buck up and do what we need to.

Even when we do understand and can explain it, it’s the rare individual in our lives willing to listen to our explanations with an open mind.

You’re just making excuses . . . I’d rather stay in bed too.
That’s your limiting BELIEF . . . you create your own reality.
So you don’t even try anymore?

But don’t you know those “sleep normal” know-it-alls would scream bloody murder if they were expected to accommodate a schedule that mandated “breakfast meetings” in the middle of their night just because the rest of the team had a different sleep schedule?

It’s a miracle that some of us haven’t strangled the smugness out of the folks who can’t muzzle opinions like the ones above — or at least attempted to smack some sense into them!  For the most part, according to the sleep disorder chatlists, we smile wanly and sob privately.

Delayed Sleep Phase Challenges

Another greatly disruptive chrono-disorder is DSPS [DSPD]Delayed Sleep Phase Syndrome [Delayed Sleep Phase Disorder].

DSPS/DSPD sufferers don’t have a longer “day,” as with N24, they have a delayed night. Even with the enforced pressure from the chrono-disruptive demands of a job, school, kids, etc., DSPS/D folks tend to get drowsy only well after midnight.

4 AM is a commonly reported time that the onset of sleep descends in many sufferers – with noon a commonly reported time they finally awaken naturally, left to follow their own chronorhythms.

They don’t sleep LONGER than a “sleep normal” individual – nor are they awake longer. They’re NOT sloths or slug-a-beds, their body clocks are set to sleep later – relative to the 9-to-5 “early to bed/early to rise” schedule commonly observed and too much touted as if it were practically a moral imperative.

Sufferers can and do find it relatively easy to adapt to the 24 hour clock as long as they can do it on their body’s natural rhythms.

Going to BED vs. Going to SLEEP

EVEN if someone with DSPS/DSPD goes to bed at what the sleep-normal world considers “a decent hour,” they can’t and don’t fall asleep until their body clock tells them it’s TIME for sleep.

  • Imagine expecting an individual with a “sleep normal” brain to go to bed the minute they currently come home from work and are still alert (say 6 P.M.), as if simply the act of lying down would make them fall asleep.
  • Now imagine that they were expected to stay asleep for a “normal” 8 hours, awakening ready for bear at 2 AM for a 4 AM school or work start.

Yeah, right!  Handle it with better “sleep hygiene”
Block out light and drink warm milk.

Mistaking one for the other

Found HERE on classroomclipart.com

Confusion between the two disorders sets in when people with DSPS/DSPD have fairly regular or even intermittent pressures to awaken in the middle of their natural sleep cycle at the insistence of “the Sleep Nazis.”

Cumulative and chronic sleep deprivation would then begin to mimic N-24 – sometimes even precipitating its onset (a further dysregulation that sometimes becomes permanent).

Neither disorder is amenable to will, by the way.
Thus the term DISORDER!

Don’t expect a lot of diagnostic help here, still unfortunately. MOST docs, even some who claim to be sleep professionals, are unaware of the signs and symptoms of chrono-struggles, so they are just as likely to tell you that you have narcolepsy or insomnia as a sleep timing disorder.

If you’re still struggling after you have seen one of those doctors,
seek out a second opinion from someone who
specializes in chronorhythm disorders
(and send your doc this article!)

When you’re talking sleep struggles, you need to turn the old saw on its HEAD “When you hear hoofbeats Think Zebras NOT horses.” N24 Awareness Participation Badge 2015

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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!"

74 Responses to Chrono-Crazy: N-24 vs. DSPS

  1. Christy B says:

    Oh wow N-24 is totally a new concept to me! And yet I totally get it that the body won’t always be able to understand that it’s a 24 hour day and so naturally it would be falling asleep… There’s so much to learn when I come here! Your example about being expected to come home from work and immediately fall asleep when lying down helped me understand the concept better as I wouldn’t be able to do that!

    Like

    • It was life-changing for me – many years ago when I finally ran across a rare description of N-24 (after searching for 20 years for an explanation of what was wrong with me). There wasn’t much I could DO about it, but at least I had an explaination besides some psychological issue that turned me into a slug-a-bed or a “limiting belief” I was supposedly too resistant to change.

      Despite attempting to explain it to anyone willing to read or listen for the last 20 years, I have friends who STILL don’t understand the dynamics of N-24 — that it is not a stable “extreme owl” condition but “rotates” around the 24 hour clock.

      I’m glad to hear that my example worked for you. Thanks so much, Christy, for taking the time to let me know.
      xx,
      mgh

      Like

  2. Pingback: Got Memory? – Part I | ADD . . . and-so-much-more

  3. Opher says:

    That’s me – delayed sleep phase – I used to write until three in the morning. Getting up for school at seven was hell. I suffered all my working life.

    Like

  4. dgkaye says:

    What a fascinating series. Lots to take in here. I’m beginning to understand my own sleep habits. But I am with Tina, I’m a late owl because I am so busy all day and night I work and when I’m finally done working I feel as those I deserve ‘a dessert’, a treat to enjoy an hour or two to watch mindless TV after a 12 to 14 hour work day. ❤ xxxx

    Liked by 1 person

    • I t-totally get that too, Deb. I don’t know anybody who goes to sleep the minute they get off work (or WANTS to!)
      xx,
      mgh

      Liked by 1 person

      • dgkaye says:

        🙂 😉 xx

        Like

  5. Reblogged this on Words To Captivate ~ by John Fioravanti and commented:
    Madelyn Griffith-Haynie discusses some of the challenges around sleep timing. Please share…

    Liked by 1 person

    • ANOTHER missed notification – so I’m late to the appreciation party (but no less sincere). Thanks SO much for spreading the Chrono-struggles word with this reblog, John.
      xx,
      mgh

      Liked by 1 person

      • You’re welcome, Madelyn!

        Like

  6. Reblogged this on By the Mighty Mumford and commented:
    USING A C-PAP MACHINE MYSELF, I FIND THIS INTERESTING!

    Liked by 1 person

    • Thanks do much for the reblog, Jonathan.

      You HAVE a C-PAP — which probably means you have already spent at least 1 night in a sleep lab (at least I HOPE docs aren’t setting folks up with those without verifying the dx, since it is relatively easy to do!)

      I don’t know the overlap stats between the diagnoses, but I would SUSPECT one in my particular case if I personally had a C-Pap and didn’t see a great deal of difference in my daytime alertness, etc. In ANY case, I’m glad to know your brain is finally getting oxygen throughout the night. BIG difference, huh?
      xx,
      mgh

      Liked by 1 person

      • Two sleep studies, actually. Before the first one, I was way out there with the nasty effects of severe sleep apnea!. SSyill a struggle—like, can;t sleep tonight! 🙂

        Liked by 1 person

        • I’m glad they caught the apnea – but I wish that docs wouldn’t stop there — and that med school and Boards would include chrono-categories in a LOT of their studies and licensing requirements.

          I know chrono-medication has only been around for half a century (::groan::) and “all things take time” – but there are some of us out here who are growing OLD (and sleepy) waiting for the AMA to join us in the 21st century!
          mgh

          Liked by 1 person

          • KEEP pushing and hoping–educating one doctor at a time…if you have to…revolutions always start this way! 🙂

            Liked by 1 person

            • Soooooooooo exhausting, time consuming, and expensive done that way tho’.

              I wish I had been bold enough at the time to insist that some of my former therapists pay ME for back-filling missing skills – sleep and ADD/EFD included – or, at the very least, comp “my” session!!
              xx,
              mgh

              Liked by 1 person

            • YOU HAVE A REALLY GOOD POINT. time to reach to the masses and professional journals! And on a few of those investigative TV shows?

              Liked by 1 person

            • Good luck there! I spent 4 Thursdays a month for 7 years of my life running classes for *anyone* who lacked the info – FOR FREE – $ paying $ for all expenses personally, including marketing, admin, unbillable time enrolling expert speakers, etc.

              Finally decided to stop because I simply ran out of money and steam – and it wasn’t making a dent in the ignorance. Even credentialed MDs, Neuroscientists, etc. have had a tough time getting their points across in any “official” capacity.

              We are an ignorant society attached to our confirmation biases, it would seem. So sad.
              xx,
              mgh

              Liked by 2 people

            • SAD INDEED! Feel any better having vented? Hope so! 🙂

              Liked by 1 person

            • A bit, thanks.

              Mostly I’m leaving a little bloggy Easter Egg, hoping that it will be found by somebody with resources of time, energy and money, perhaps inspiring THEM to step up to attempt to make some kind of difference. 🙂

              I’ve tried years of “positivity” – and now I’m trying “it can’t be done” – lol!
              xx,
              mgh

              Like

  7. Norah says:

    I’d never heard of N-24, Madelyn. How appropriate to use November 24 to increase people’s awareness of it. It must be quite debilitating for those with the disorder. I have met some people who prefer to stay up late and rise late. I said “prefer” because I thought it was a preference. Thanks for the information. It’s quite fascinating.

    Liked by 1 person

    • Thanks for reading with an open mind, Norah. I wish we could clone you!
      xx,
      mgh

      Liked by 1 person

      • Norah says:

        That thought sounds dangerous, Madelyn! 🙂 Though I must admit, I’d sometimes like to clone myself. That way I could get much more done. 🙂

        Liked by 1 person

        • LOL – I want my clone to be working while I sleep, primarily (and I want her to double down on Social Media so that I can ignore it totally ::evil grin::). I doubt I need another “voice in my head” to distract me during my waking hours. 🙂
          xx,
          mgh

          Like

  8. Tina Frisco says:

    And then there are those of us who fight going to sleep, because the day was so long and grueling that we just want a little time to relax and enjoy being alive. I’m working on a cure for that one 🙂 ❤

    Liked by 1 person

    • But that’s wind-down time – which is a GOOD thing, right?
      xx,
      mgh

      Liked by 1 person

      • Tina Frisco says:

        I hope so. But I hate having to get up to brush my teeth after dozing off 🙂 ❤

        Liked by 1 person

        • LOL – or wash my face. I started keeping those “wet wipes for grown-ups” next to the couch and the bed!
          xx, mgh

          Liked by 1 person

          • Tina Frisco says:

            Omg, I have them everywhere! 🙂

            Liked by 1 person

            • LOL – we could live together, Tina!
              xx,
              mgh

              Liked by 1 person

            • Tina Frisco says:

              Easily, Madelyn! ❤

              Liked by 1 person

  9. paulandruss says:

    Another brilliant article Madelyn and judging from the comments one that has resonated with a lot of people.

    As Sue Vincent said in the first comment so many working people (with ‘normal’ sleep patterns) spend their life sleep deprived because there are simply not enough hours in the day to do all that needs to be done.

    Then there are all the people who have a sleep dysfunction (and one cannot even begin to make a list of all the causes… but the effect is the same).

    This is truly an epidemic not helped (as you say) with the electric light and other optic stimulants such as television, computer and cell screens. Never mind the content that disturbs our equilibrium from exciting films to upsetting news to the stimulation of on line games.

    One message always come across very clearly in your professional advice: we must take responsibility for ourselves and learn techniques to manage our negative behaviours that lead to disruption in patterns and habit formation.

    Despite the fact everything in this life is not solvable, if we only took the care with ourselves with the same care we take with all other aspects of our lives (especially our work lives) we could reduce negative impacts, which has got to be a good thing.

    Liked by 1 person

    • Very wise comment, Paul. There is MUCH we can do for ourselves and our health, beginning with seeking out good info and setting up our lives to do what we need to do to work with and around WHATEVER is going on with us!!

      MOST people ignore how important sleep is to health, however – and how chronorhythms impact sleep. As the Mars mission draws closer we will hear more about it — so maybe then more docs will get a clue?
      xx,
      mgn

      Liked by 1 person

      • paulandruss says:

        Madelyn, I hope so. I know poor sleep can lead to poor snap judgements and that can have massive impacts quite out of proportion because they affect all sorts relationship work and life management long term. Good on you for flying the MARTIAN Flag! Px

        Liked by 1 person

        • Oh yeah, Paul – MARS: different day length, different light waves — they’ve got to be concerned on the overall impact on melatonin production and sleep – which dominoes down to alertness, cognition, decision-making, hormonal regulation, etc.

          They’ve GOT to have some serious chrono-geeks involved – so I’m sure that EVEN the sound-bite press will pick up on the problem. I just pray that they report on the problems/issues accurately, which would be refreshing. LOL

          We may have to wait a few years for a decent documentary (and pray that the sound-bite bloggers and tweeters actually watch the darned thing before they ring in!)
          xx,
          mgh

          Liked by 1 person

  10. Clive says:

    Thank you for this, I learned a lot! xx

    Liked by 1 person

    • You’re quite welcome, Clive. Thanks for reading.
      xx,
      mgh

      Liked by 1 person

  11. Chuck says:

    Hi Madelyn,
    My normal sleep pattern now is I fall asleep within 10 minutes of my head hitting my pillow. 2 1/2 – 3 hours later, I’m awake. The brain is going into a replay mode with either a song or something I’ve encountered. If I don’t take a sleeping pill, I’ll be awake for hours before exhaustion takes over. Then my next day is ruined because of the sleep deficit. So I take the pill and within 30 minutes, I’m back to sleep for 4 – 5 hours. My physician says don’t worry about it, take the pills and get the rest. He says it is normal for some seniors to have a change in sleep patterns. Is he right? Is there any longterm effect taking sleeping pills other than addiction to using them? BTW, great piece. This one I can relate.

    Liked by 1 person

    • So what I’m hearing, for what it’s worth, is that you get in one sleep cycle, then awaken during the REM phase (“replay”) and can’t get back to sleep. A night in a sleep lab might help nail down what’s going on, if you want to really KNOW.

      Meanwhile . . .

      Opinions are mixed, Chuck, about what’s “normal” when we age (in the age of the electric light!) – and all over the map. Your doc may well be right that change is what’s normal. Our brains certainly change as we age, so why not our sleep patterns?

      DITTO opinions about sleeping pills. If you notice they help you get enough sleep AND be able to function the following day, it seems to me that they are currently working for YOU. Good to keep checking in with your doctor (and keeping up with the research), but don’t make yourself crazy with worry about addiction, side-effects you aren’t experiencing, etc.

      If he’s been steering you right so far and his information-base seems current, I’d be inclined to trust his advice. If you sense he’s brushing you off, bring up that thought with HIM and/or check it out with a second opinion.

      Thanks for reading and ringing in.
      xx,
      mgh

      Liked by 1 person

  12. Thank you for sharing this extremely important information, Madelyn, for educating your readers about the least known disorders, and, most of all, for making the sufferers feel better knowing that they are not alone!

    Liked by 1 person

    • Thanks, Dolly. It was a revelation to me, years ago, after several decades of make-wrong and frustration. I’m simply paying it forward.
      xx,
      mgh

      Liked by 1 person

      • And doing an excellent job of it!

        Liked by 1 person

        • ❤ Thank you!
          xx, mgh

          Liked by 1 person

          • Only telling the truth, as I see it!

            Liked by 1 person

  13. milliethom says:

    You are doing an amazing job of bringing these sleep disorders to the attention of not only the everyday public, but the medical profession as well. Having only read your article from 2016 yesterday, this post has helped to deepen and consolidate my understanding of the disorder and the difficulties faced by sufferers. Kudos to you, Madelyn.

    Liked by 1 person

    • Thanks, Millie. It has always seemed to me that medical pros seem to discount the reality that there are human beings struggling at the other end of their research — whether they were able to “prove” or “disprove” in their particular study sampling or not — ESPECIALLY where chronorhythm disorders are concerned!

      If they don’t study it, they can’t really say anything about it, so I wish they’d STOP misrepresenting what they think they “know” !!!

      DITTO the popular press and all the blogging gurus, right?
      xx,
      mgh

      Like

  14. -Eugenia says:

    This is excellent information, Madelyn, and thank you for sharing. Happy Belated Thanksgiving!

    Liked by 1 person

    • Glad you liked it, Eugenia. Happy “belated” to you as well.
      xx,
      mgh

      Like

  15. Thank you for the very usefulinformation, Madelyn! Happy Thanksgiving and a good weekend, too. Michael

    Liked by 1 person

    • You’re welcome, Michael. My hope is that someone who is going crazy wondering what’s going on will read this and go, AHA!

      AND that maybe they’ll take the article to their doctors, who will FINALLY start looking at chronorhythm disorders and taking client stories seriously (and maybe EVEN click a few links to the other articles in my Sleep Series & check out those embedded references!)
      xx,
      mgh

      Like

  16. Reblogged this on Die Erste Eslarner Zeitung – Aus und über Eslarn, sowie die bayerisch-tschechische Region!.

    Liked by 1 person

    • Thank you again for your help spreading the word, Michael. It takes a village, right?
      xx,
      mgh

      Like

  17. mihrank says:

    lol – this is deeply informative and practical – Wishing you a picture perfect table with a positive mood on this holiday season. Happy Thanksgiving!

    Liked by 1 person

    • Thanks so much – your wish for me certainly came through yesterday (Thanksgiving) — may each of us step forward with more of same for the remainder of 2017 – setting the expectation of a WONDERFUL 2018.
      xx,
      mgh

      Like

  18. Sue Vincent says:

    Between what our bodies think is normal and the world’s expectations, there is a huge gap…even for those with a ‘normal’ sleep pattern. On the rare occasions when I can go to bed when drowsy and rise without an alarm clock dragging me from sleep, it was always nine hours. Life with work/family/commitments doesn’t allow nine hour nights so most days I have a three hour deficit. That is far from unusual, and I can’t imagine how hard it must be to fit an unusual sleep pattern around other people’s schedules, but I do wonder what we are doing to ourselves buy insisting that we listen to the alarm clock rather than the body clock. xx

    Liked by 2 people

    • YES! The electric light changed a lot – and most of it not pro-health! In many ways it’s as if evolution shoved us into a time machine and set us down several thousand years or so in the future — practically overnight. In less that 100 years we went from a people who lived by nature’s light and dark cycle to a 24/7 society. Our biology cannot possible have kept up with the pace of our technology.

      As a society, we live with massive sleep debt – and sleep disorders are probably not the only health problems on the rise as a direct result of trying to get by on too little sleep. It’s endemic.

      BUT, as you say, life with work/family/commitments in our industrialized societies doesn’t allow for the kind of sleep we need. And many of us struggle!
      xx,
      mgh

      Like

      • Sue Vincent says:

        The worrying thing is how quickly we accept that the imposition of societal need takes precedence over health. xx

        Liked by 1 person

        • I’m with you on that one, Sue. QUITE concerning that we seek to push our physical boundaries with substances (limping along) vs. working within them to accomplish more because we’re functioning better.
          xx,
          mgh

          Like

          • Sue Vincent says:

            But th system dictates…and our own systems have to jump to attention, like it or not… xx

            Liked by 1 person

            • Conscious awareness helps us escape the tractor-beams somewhat, however.
              xx, mgh

              Like

            • Sue Vincent says:

              Sometimes 😉 xx

              Liked by 1 person

            • Alas – confirmation bias is tough to overcome.
              xx,
              mgh

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  19. Pingback: Everything you ever wanted to know about SLEEP | ADD . . . and-so-much-more

  20. Awesome info, Madelyn! As you know, I’ve got the Non-24, 30-hour body clock lol. And my husband has the DSPS/DSPD for sure lol. I realized both only after reading your blog! Otherwise I would probably have never known. So I thank you SO much for this wonderful information, and I’m really grateful for your willingness to share it, and in such excellent detail! Just identifying the issues at play can be life-changing, and you’ve definitely helped both of us in that way!! 👏🏼👏🏼👍🏼💟. Thank you thank you 💖💖

    Liked by 1 person

    • Oh Laina, you have made my night!

      I know *exactly* what it’s like when you have no idea what’s going on, much less what might make some sort of a difference. I spent decades in groups and on various chat lists, etc. (starting before the dawn of aol, btw), describing my symptoms and asking if anybody else had anything remotely similar, before I found *anything* helpful — God Bless Su Laine Yeo!

      I never DREAMED, however, that several decades later I would STILL be reading MYTHS like “N-24 affects primarily the blind” and that “you can ‘reset’ DSPS by advance phasing 30 minutes a week” (as if lousy sleep hygiene and lack of rigor was the main problem).

      So THAT is why I share. And you are so very welcome.
      xx,
      mgh

      Liked by 1 person

      • Awww!! Girl, you made my morning! 😘❤️. I wonder if those Non-24 myths originated–and stubbornly persist–because of the drug ads on TV? I wonder if it’s because the drugs themselves used to “treat” Non-24 are only approved for use in blind people (that’s true), and not anyone else with Non-24, which of course probably slants the type of coverage of (or attention paid to) the disorder itself (?).

        As in, “well, we have a drug for that, but only approved for a certain population, so if you fit into that population, this drug’s for you, but if not, you’re SOL, you’re on your own, and we’re just not going to talk about/to you “?

        I think that’s why I never knew that *I* was Non-24; the only mention of it that I’d ever come across was on those commercials, and since I wasn’t a young blind guy returning home from military service overseas, it didn’t even cross my mind that I’m Non-24, too! 😳😱

        And that’s exactly why your information is especially valuable! You’re telling, as Paul Harvey would say, “the *rest* of the story” 😁👍🏼👏🏼👏🏼👏🏼. And thank you so much for doing that 😘❣❣

        Liked by 1 person

        • NOPE, Laina – the MYTH led to the N-24 Tasimelteon study being focused ONLY on the blind. They received FDA approval in January 2014 for the population they STUDIED. That does NOT “indicate” that N-24 is limited to the blind – and it most certainly does NOT “prove” it!!!

          Unless they rigorously EXCLUDED “blind sight” participants from the study as well, I could certainly argue that they had some serious sampling error in their data, given the theory they began with!!!

          Since “off label” usage happens with all drugs (too expensive to test for *everything*), a brave doc might prescribe for you, but your insurance will probably-to-definitely decline coverage, and who knows whether Vanda will include sighted participants in any discount programs they might offer.
          xx,
          mgh
          ~~~~~~~~~~~
          From Wikipedia: In May 2013 Vanda Pharmaceuticals submitted a New Drug Application to the Food and Drug Administration for tasimelteon for the treatment of non-24-hour sleep–wake disorder in totally blind people. It was approved by the FDA on January 31, 2014 under the brand name Hetlioz. In the opinion of Public Citizen, an advocacy group, the FDA erroneously allowed it to be labelled without stating that it is only approved for use by totally blind people.

          However, FDA updated its press release on Oct. 2, 2014 to clarify the approved use of Hetlioz, which includes both sighted and blind individuals. The update did not change the drug labeling (prescribing information).

          Liked by 1 person

          • Oh wow! 💓. That’s awesome information!! So the myth came *first*?! Wow. Just wow 😳. Unbelievable! So did they just “miss” the rest of us, the thousands or millions of sighted people who have Non-24? I wonder how that myth even came to be?? 💙

            Yeah I’m not sure if I’ll try to find a brave prescribing doc or not 😊. I don’t have insurance at all, so at least that part doesn’t matter 😉. I find that I get treated better and my medical care is a lot less headache *without* insurance lol. No bean counters to wrangle with or senseless hoops to jump through 👍🏼👍🏼. I get to choose my doctors and we get to treat my issues without any hassle or surprise bills later 😁. That said, it’s scary as hell to go without insurance, in case something catastrophic happens 😳. Life for us is a sea of eggshells 🌺💟

            Liked by 1 person

            • Yep – and informed the theory they set out to study (lol – hoping to “prove”) — i.,e. that ONLY those individuals who were physically unable to rephase to light would not be able to do so.

              The rest of us were thrown under the “sleep hygiene” bus! 😦 That’s the problem with demonizing anecdotal evidence, looking only to scientific studies to determine the truths of our world!
              xx,
              mgh

              Liked by 1 person

            • Oh man! Talk about gaslighting! Blame the victim, if you will 🌷. I agree, anecdotal evidence is NOT useless!! It’s what fuels the studies that get done. But what’s true research if there’s bias like that from the git-go?! 😡. How frustrating 💞🌺. Thank you so much for exposing this! 👏🏼👏🏼👏🏼

              Liked by 1 person

            • You’re welcome, Laina. I’m not the first – and I’m sure I won’t be the last – BUT, after 60 years of pretty much being ignored, I’m not sure that most of the docs and researchers are listening. 😦

              We need MORE of us raising a ruckus and passing the word along. (I’ll come back and haunt them when I’m dead!) 🙂
              xx,
              mgh

              Liked by 1 person

  21. Madelyn this is one the most important, most needed information.
    You have been doing a Yeoman service, I appreciate and your service is commendable. 👍👌💕💥💞🌷
    Shiva

    Liked by 1 person

    • Thank you so much Shiva. I can’t erase the damage to my own life from my “wilderness wandering” years, but I can certainly do what I can to light the way for others. I would shout this particular information from the rooftops if I could – and force feed it to every doctor on the planet!
      xx,
      mgh

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