JetLagged for Life


Please – take time to read the comments.  We are NOT alone!

(c) Madelyn Griffith-Haynie, CTP, CMC, ACT, MCC, SCAC
Part 1 of the  Sleep Struggles Series – all rights reserved

Living with Jet Lag

A first person account of an ADDer with an atypical
sleep disorder — me.

This Series is excerpted from a book I am writing about disordered sleep architecture.  The content in a chapter of the section on some of the lesser known sleep disorders was written from personal experience, hoping to “put a face” on chronorhythm disorders, – disorders of sleep timing.  

I hope that looking at life and living through the experience of a “coulda’ been a REAL contender” sufferer would describe things better than a list of symptoms and probable causes ever could. ~ mgh

As I explained in the introductory article to the sleep disorders content on ADDandSoMuchMore.com (ABOUT ADD & Sleep Struggles), 75% of us here in ADD/EFD-land have sleep struggles, if not diagnostic sleep disorders.

I am one of them.  Here’s why what I have to say on the topic might interest YOU.

I am also an ADD Coach and trainer, one of the life coaching field’s earliest pioneers, founder of the first coaching school with an ADD-specific training curriculum, and creator of many key terms and techniques used in the ADD Coaching field today.

ADDvocacy and Information

I consider myself THE ADD Poster Girl –- finally diagnosed with Attention Deficit Disorder at age 38 — and I have been working with ADD consciously for almost three decades now (don’t rush me!)

I was among the first wave of adult diagnoses at a time when doctors and therapists began to wake up to the reality that ADD does not, in fact, disappear at puberty (around the same time as the use of ADDults in the Zametkin Pet Study (published in the New England Journal of Medicine in November 1990).

For anyone interested, the circumstances surrounding my extremely fortunate but serendipitious diagnosis can be found in the article entitled Heartbreaking New York Times ADD Article: Don’t Drink the Kool Aid (scroll DOWN a bit for them).

Not only was ADD information scarce in those days, treatment protocols for ADDults were non-existent.  I was determined to investigate on my own and to develop a way to work around my challenges.  My research and work-arounds became the genesis of a new career and a new profession: ADD Coaching.

JetLagged for Life

Dan Addison

On top of coping with ADD challenges, I live with an atypical chronorhythm disorder officially named Hypernychthemeral Syndrome, also referred to as “Delayed Sleep Phase Syndrome, Non-24 hour sleep/wake” (in addition to DSPS/non-24, DSPS/N24, N-24, and non-24-hr CRD [Cyclothmic Rhythm Disorder].

This particular “creature of the night” condition quite often does not “re-phase in response to light,” as do the sleep-wake patterns of most individuals generally.

As a result, until relatively recently, DSPS/N24 was believed to affect primarily the blind – extremely rare in the sighted community.  After talking to more than a few people like me in my investigative journey, I’m not so sure about that!

In any case, it affects ME.  Some of YOU may well recognize your own struggles in my description below — or those of someone you live with and love.  That’s why I’m sharing.

I will begin with an overview of disorders like mine, but the article concludes with a great many examples of how it has affected me personally.

Before I publish articles explaining a great deal more about circadian rhythms, sleep architecture and what’s going on in the brain of someone struggling with a sleep-timing disorder, I want you to understand a bit of what might be going on in the LIFE of someone struggling with a sleep-timing disorder –– empathy first.

Transition Traumas and LOTS of make-wrong

I have been painfully aware throughout my life that it takes an unusually long time for my brain to balance itself at both ends of the sleep boundary, even once a sub-clinical dose of an SSRI was in my system, with the kick-in the pants of psychostimulant medication every morning. For forty years I believed I was the ONLY person so afflicted.

Regulating my sleep schedule became more difficult the closer I got to menopause, in addition to the more commonly reported worsening of ADD symptoms among the female half of the ADD population.

• ADD is regularly misunderstood, mislabeled, maligned and made fun of;
• DSPS/N24 is rarely even believed, and hardly ever accommodated.

Most human beings respond to the unfamiliar through their prejudices, conventional paradigms and subjective expectations.  While certainly understandable, it does not excuse the damage done to the lives of those who are struggling.

 Helping professionals, coaches, parents,
and those who claim to love a sufferer
must always strive for more.  

Not only are most of the judgments about ADD – and sleep disorders – borne of ignorance and flat out wrong, they delay the development of systems and strategies that will help a sufferer learn to cope, increasing the likelihood that a client or loved-one will give up hope long before they can fashion a life worth living.

No Way!

Granted, it is difficult to believe that someone cannot march to the standard cadence – cannot find a way to awaken daily at some predicable, scheduled time, or that anyone could struggle to fall asleep each night with no idea when their sleep cycle might end without a-typical intervention.

However, it is impossible to provide effective coaching – or parenting – or for anyone to provide assistance that is truly helpful, if we do not do our dead-level best to “listen from belief.” (<– please click the link if you don’t know the term).

While judgment (or “make-wrong”) is rare within the ADD coaching community, it is especially disheartening, if not unexpectedly damaging, every single time it rears its ugly head.

I know: those slings and arrows have been shot my way more than a few times, let fly by the very people who darned well SHOULD know better! (and you have to know I RARELY use the s-word!)

Information is one of the most effective weapons in the war against judgment.
Thank you to everyone who is making it your business to GET some!

So what IS this disorder?

FIRST, DSPS N/24  is classified in the primary grouping of circadian rhythm-based sleep disorders, characterized by a disturbance in the regulation of circadian systems leading to irregular sleep/wake patterns.  The primary group includes disorders with a persistent inability to entrain the individual’s circadian rhythms to that of the rest of the world.

Delayed Sleep Phase Syndrome [DSPS] is a sleep-timing disorder that “default’s” to a “delayed” onset of sleep, much later than what most of the world considers an “appropriate” bedtime.

Many with this disorder, left to their own devices, sleep from 4 AM to noon, awakening refreshed and alert, struggling only when they are expected to awaken earlier, since they cannot easily fall asleep earlier!

The International Classification of Sleep Disorders  defines DSPS N/24  as, “a chronic steady pattern comprising one- to two-hour daily delays in sleep onset and wake times in an individual living in society.”

Wikipedia explains it this way (formatting mine)

Non-24-hour sleep-wake syndrome . . . is a circadian rhythm sleep disorder .

In people with this disorder, the person’s body essentially insists that the day is longer than 24 hours.

This tends to preclude socially accepted sleeping patterns, and makes it difficult for the sufferer to sleep at “normal” times, according to the neurotypical world. Most cases that have been reported in the medical literature have occurred in blind patients.

Left untreated, non-24-hour sleep-wake syndrome causes a person’s sleep-wake cycle to change every day, the degree determined by how much over 24 hours the cycle lasts.

The cycle may go around the clock, eventually returning to “normal” for one or two days before going “off” again. This (presentation) is known as “Free-running”.

People with the disorder often have a hard time “resetting” their internal clocks to socially accepted sleep-wake patterns.

I have learned we do best with a rock-solid stable wake-up time.

We have an especially difficult time adjusting to changes in sleep-wake cycles, like:

  • being requested to awaken earlier than “normal” to attend to something someone else deems “important”
  • vacation sleep-timing changes
  • sudden and immediate time changes like daylight saving time, or travel to different time zones
  • resetting our internal clock after sleeping excessively recovering from an iillness
  • even changes in daylight hours in different seasons.

Living with this disorder is like a daily experience of attempting to recover from a cross-country plane ride: LIVING with jet lag — every single day of your life.

Sharing my Story

I have always maintained that my refusal to hide my own ADD challenges was the best illustration I could provide to underscore a very important point: it is not necessary to function perfectly to create a life of ongoing accomplishment. 

Over the years I have shared my personal experience with my own ADD struggles while I was developing and sharing the self-management techniques that became the foundation of the A.C.T. Program (ADD Coach Training) at The Optimal Functioning Institute™ – OFI.

I have been told that those first-person accounts have helped my coaches learn how to really listen to their clients and loved ones, because they could better relate to what they were hearing from them after hearing it from me.

Never let what you cannot do overshadow what you CAN!

In the spirit of the above mantra, I have decided to go public with the particulars of my life-long sleep disorder in addition to sharing my ADD challenges – giving the world a first-person account of the details of one woman’s experience with an obstinate, frustrating sleep/wake disorder from someone who has managed, nonetheless, to do something somewhat remarkable with her life.

  • I decided to share to offer the comfort of empathy to those of you who will recognize elements of your own history as you read mine, along with the relief of knowing that you are not alone.
  • I decided to share in the hope that it would create heightened awareness, understanding, and empathy in the parents, partners and work-places of fellow sufferers. 

pdclipart.org

But most of all, I decided to share to catalog information for the coaching community.

It is past time for every single Coach on the planet — especially those who work with ADDers — to “wake up and smell the coffee” brewing for clients with co-morbid sleep disorders.

Which Came First?

While it is unclear whether ADD and sleep disturbances are, respectively, the chicken and the egg or the other way around, when they occur in tandem, we must be prepared to coach – and parent – them in tandem.

Without sufficient information, how can we expect to effectively coach the three out of every four individuals in the ADD community who struggle with a-typical sleep architecture?

Damned if I sleep – and damned if I don’t

It has been an enormous challenge to manage my ADD symptoms to a point where my life is consistent with my level of intelligence, education, and drive.  As I have said repeatedly to my coaches and clients:

“ADD will always be ADD, and none of us can hold realistic expectations of immunity from its challenges. Our goal must be to learn how to succeed despite these challenges, not to waste our energies beating ourselves up because we can’t make them go away.”

HOWEVER . . . living with ADD is a piece of cake compared to living with ADD and comorbid N-24! Each one amplifies the effects of the other, making it difficult to unravel the tangled threads of cause and effect to figure out how to develop work-arounds for either one.

On a Different Clock

Much of the sleep disorder literature addresses the actual processes of falling asleep or being asleep, with shades of dysfunction measured by the duration of the REM phase or the frequency of disruptions of the sleep cycle.

In addition to the differences in the timing of sleep and wakefulness, Delayed Sleep Phase Syndrome also involves an impaired ability to navigate the transitions from sleep to wakefulness (and vice versa), an aspect particularly troubling to an ADDer.  The resulting pattern is a kind of “sleep/wake” disturbance in which an ADDer’s unique difficulties with transitions add fuel to the fire and challenge attempts to design a life of success.

Consequences of A Sleep Disorder (mine!)

Falling asleep and waking intentionally has been a life-long struggle. Frustrating and discouraging, it has limited my potential in many ways.

• My “day” contains very few hours that “overlap” the schedules of stores and services in my time zone.  

I could write a regional guide to the best grocery stores open-past-midnight and the safest, well-lit, all-night laundries, gas stations, and drug stores.

If it weren’t for 24-hour supermarkets and ATMs, I might have starved to death.

• My hours severely limit my contact with friends.

It is a challenge to coordinate even a simple chat on the phone with most the rest of you earthlings anywhere near my time zone.

• Any intimate relationship becomes unnecessarily complex,
          because the time we share awake or asleep is minimal.

• Many days in winter I barely see the sun.

I am rarely able to fall asleep before 3:30 or 4:00 AM.  Frequently, I am still wide awake at dawn – when sleep finally descends like an oppressive curtain: THUD.

I became an “extreme owl” by default, despite the fact that it disconnects me from the rest of the world.

 • Earning a living has been tricky.

Most people believe I have set my schedule to accommodate a global practice and
night-time TeleClasses.

In fact, it has always been the other way around.  Entrepreneurship was born of necessity – I cannot count on myself to be able to work on anyone else’s schedule.

And that is the most insidious consequence: I cannot count on myself.

It’s bad enough that fluctuations in my sleep schedule affect my ability to maintain intentionality of focus in my waking hours – difficulties falling asleep and waking up affect my ability to maintain intentionality in my daily agenda.

I know that it’s difficult to understand how anyone could miss an appointment at 4:00 PM because she overslept, but imagine how you would feel if you were the one who had to explain it?

Overtures of Overcompensation

In typical ADD fashion, I have frequently felt the pull to try to make up for areas of “shameful” limitation, despite the fact that it doesn’t change much of anything, and rarely serves me.

When wide-awake, I appear to be a tireless worker with boundless energy.  In truth, I push myself beyond all reasonable limits as I repeatedly “come through,” despite tremendous odds against it, trying to make up for the times when it was impossible for me to come through at all.

Balancing appropriate and healthy self-care boundaries with an uneasy desire to prove to others I’m not the flake I sometimes appear to be is a challenge still.

Every day I wake up late and feel like I simply must “hit the ground running,” my mood oscillates between remarkable resolve and feelings of competency (as I somehow accomplish the impossible), and self-damning inadequacy I feel helpless to impact when I realize I have again modeled perfectly “the ADD oops.”

I know behavioral inconsistencies make it difficult for others to understand my intentions or believe in my commitment to success.  So I push harder still, working late into the night to make up for lost time.  And the pattern escalates.

And I know that I’m not the only ADDer on the planet for whom this experience recurs like a bad dream. 

Creature of the Night

Anyone with Delayed Sleep Phase Syndrome is “an extreme owl”  — we are not morning people. I jokingly describe myself as “a confirmed vampire:” I come alive once the sun sets and seldom feel sleepy until the first rays of dawn! I seem to have a paradoxical relationship to light

  • It is extremely unusual for me to feel the internal prompt to sleep when it is dark outside
  • Others have said that when I am outside in the daylight I seem “mellower.”
  • More than a few have assumed I was stoned.

Volleyball? I don’t think so – who’s awake enough for running around? Catch me for a hot ping-pong game after midnight!

  • Only when I keep darkening shades on my windows and avoid all yellow-toned light in favor of bright white halogens am I able to concentrate on those boring administrative tasks during the daylight hours of late afternoon and early evening
  • As evening turns to night my mental acuity becomes increasingly sharp and focused which, without distractions, continues to improve until it suddenly drops off around dawn, when I can barely get it together to put myself to bed.

It seems almost as if my brain has given up frustrating attempts to work with light cues by encouraging me to avoid daylight altogether.

All Wound-Up with No Place To Go

Cognitive arousal at the very end of my “day” was quite a bizarre puzzle.

Sometimes, even when I could barely keep my eyes open any longer, the process of getting into bed and turning out the light would “rev me up” to the point where I couldn’t fall sleep.

Yet stimulating substances had the opposite effect.

  • Long before I experienced the so-called “paradoxical effect” of stimulant medication, I figured out that a huge cup of coffee at bedtime made it easier to drift off!
  • If I still couldn’t sleep after 20 to 30 minutes, another one generally did the trick.

Yale’s Thomas E. Brown, Ph.D., one of whose specialties has been ADD and Sleep Disorders, reports on similar experiences with many of his patients.

Sleep’s door turns out to be a window

Dr. Paul Elliott’s “filtered rebound” explanation and  “sleep window” information was seminal, and gave me an explanation for my experience with stimulants at bedtime. I will share with you what he shared with me in future articles in this Series.

It also let me know how important it was to put myself to bed during my sleep window.

If I miss it, I sometimes can’t get to sleep at all until I suddenly crash in the middle of the following afternoon, too fuzzy to keep going – actually seeing and hearing things that are, shall we say, “logically inconsistent.”

I also sleep very deeply, and seldom hear even the loudest alarms – or several in combination – which continues to be practically impossible for others to believe until they experience for themselves how much I can sleep through once I finally fall asleep.

I sleep like the DEAD.

Really!  I am not one who “hits the snooze”  – I would have to hear the blaring clock radios (or the banging on the door by others who DO hear them) to be able to hit the snooze button repeatedly.

  • Since alarm clocks rarely last very long anymore, I have been on a life-long hunt for those that don’t turn themselves off after a period of time.
  • Would you believe that it sometimes takes well over an hour or two for an alarm to infiltrate my sleeping brain?  (Didn’t think so – but it DOES.)

During those periods where my sleep/wake timing is closer to the rest of the people in my world, there are exceptions that sometimes create suspicions that my reported experience is simply an excuse to be a slug-a-bed.

  • You generally have to touch me to awaken me, no matter what else you try.
  • Run the vacuum in the room where I am sleeping or run a chain saw right outside the window, it won’t bother me.

Once asleep, I seem to sleep more deeply than others, almost instantaneously.  When it’s time for me to crash, blaring rap music might as well be a lullaby.

Consider the implications before you wish that you could sleep that deeply.

©Philip Martin – artist/educator

Dreaming of Christmas Trees

Not only was I tough to awaken for school (and I loved school),
I was the kid they had to wake for Christmas.

  • Isn’t it almost a Christmas cliché that kids bound out of bed in the wee hours of the morning every December 25th, eager to tear into the gifts under the tree?
  • Don’t almost ALL parents wish their kids would allow them to sleep beyond dawn any time they wake up excitedly early? Isn’t that normal? 
  • Not in my reality.

Anyone who knows me even a little bit will tell you that I adore the entire Christmas season, and I am always eager to participate. I always have been.

  • Nonetheless, I found the pressure to wake up at the crack of dawn extremely unpleasant, and I couldn’t really enjoy things very much immediately after awakening.
  • Over my younger sister Jaye’s strenuous objections, as soon as our youngest brother stopped believing in Santa, my family decided to open presents on Christmas Eve to spare everyone else the hassle of my morning.

I have mentioned that Christmas example to quite a few people.  It always gets a laugh, but the implications of my reality never seem to compute for those who do not struggle personally.

Sleeping Like the Dead

When I was in college, I slept through a 5-alarm early morning fire that burned the building next to the house in which I had an apartment TO THE GROUND.  The firemen who evacuated my building assumed that nobody could possibly be behind the attic apartment door they pounded on so forcefully.

I snoozed on, oblivious to the clean-up racket the next morning, in addition to any commotion as they fought the fire until dawn.  I awakened the following afternoon, stunned by what I saw when I looked out the window.  To me it was as if that the building had simply vanished in the middle of the night.

I could go on for quite a while with similar tales of sleeping through a variety of events, for example:

  • Late afternoon and early evening exams, meetings and flights
  • The banging on the door by locked out roommates, along with broken windows and other forced entries
  • A hurricane that swerved inland unexpectedly in the wee hours, heading right for the area where we had been evacuated. I slept peacefully on, sawing logs on a screened-in sleeping porch, while uprooted trees crashed to the ground just inches from my head.
  • The fury of an entire dormitory floor pounding on my door while I slept, totally unaware of a full-volume clock radio right beside my head.

I opened my eyes to a gaggle of girls peering down at me over the shoulder of a concerned resident assistant who was shaking my arm and calling my name.

My fellow dorm-dwellers had convinced her to open my room with a pass key because, I was “obviously dead or in a coma due to a drug overdose!!”

I became aware, after my first and only major surgery that, for at least an hour almost every single morning, I am like a person coming to consciousness after major anesthesia.

  • Other than the extreme dehydration of anesthesia, my first experience of “awakening” in that hospital felt no different than awakening most days.
  • A good friend who lived with me for some years, present as my medical proxy, reported a similar observation.
  • The daily struggling for consciousness has worsened through the years.

And that’s not all . . .

Stay tuned for more of this story, with a more detailed explanation of what’s going on with chronorhythm disorders in general — along with some things you can try that might help you keep your life on track and what you need to avoid (or stop) if you are hoping to help a loved one stabilize.

As always, if you want notification of new articles – in the Sleep Series, or any new posts on this blog – give your email to the nice form on the top of the skinny column to the right.  (You only have to do this once, so if you’ve already asked for notification about a prior series, you’re covered for this one too) STRICT No Spam Policy

—————————————————————————————————————–
Remember, if you’d like my private (or group) coaching/mentor coaching help with anything that comes up while you are reading this material (either for your own life, that of a loved one, or as coaching skills development), click the E-me link  <—here (or on the menubar at the top of every page). You can ALSO click –> Brain-Based Coaching with Me (with a contact form at the bottom, following links to coaching info). I’ll get back to you ASAP (accent on the “P”ossible!)

 

You might also be interested in some of the following articles
available right now – on this site and elsewhere.

For links in context: run your cursor over the article above and the dark grey links will turn dark red;
(subtle, so they don’t pull focus while you read, but you can find them to click when you’re ready for them)
— and check out the links to other Related Content in each of the articles themselves —

Related articles right here on ADDandSoMuchMore.com
(in case you missed them above or below)

Other Articles in the Sleep Series

A few Comorbidity Articles here on ADDandSoMuchMore.com

BY THE WAY: Since ADDandSoMuchMore.com is an Evergreen site, I revisit all my content periodically to update links — when you link back, like, follow or comment, you STAY on the page. When you do not, you run a high risk of getting replaced by a site with a more generous come-from.

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!"

56 Responses to JetLagged for Life

  1. Pingback: ALL I want for Christmas is . . . | ADD . . . and-so-much-more

  2. lwbut says:

    Sounds horrible – but us humans are nothing if not adaptive.
    I’m more of a night owl/late riser too but was curious about this: I am rarely able to fall asleep before 3:30 or 4:00 AM. Frequently, I am still wide awake at dawn – when sleep finally descends like an oppressive curtain: THUD.
    Do you travel overseas? Does the timing vary if you are in much different time zones? Have you ever found a time zone where your sleep pattern fitted with the ‘norm’? or is it strictly yellow sunlight based (like Superman’s source of his power?) and stays @ 3-4 am everywhere you go?

    love.

    Liked by 1 person

    • Interesting that you picked up on my problem with yellow light – natural or artificial, btw. I do not travel overseas – except virtually, because they are up and about when I am, and most of my friends live on the east coast here in America.

      I did find that at my friend’s house in Vegas I was a bit more “on phase” in her time zone – but I was coming from the east coast and wasn’t there long enough to adapt, so I don’t know if the extremely bright desert sunlight might have been a hindrance or a help. The heat would have done me in first, however. 🙂

      Delayed Sleep Phase (disorder or syndrome) is the sleep timing disorder where native rhythms are 3 to 4 AM bedtime – noon awakening, when allowed to sleep on their own schedule.

      N-24 is not predictably stable — it “revolves.” Let’s say, for example, your brain’s day is 25 hours, then your brain’s “bedtime” is an hour later every night (so if you sleep 8 hours, you wake up an hour later every day too – or you get an hour less sleep every day). It is not regular where the earth clock is concerned, however – thus the bigger problem to predict and live with.

      Since I don’t wake to sound reliably, I try to keep my noonish wake up time relatively stable so that I can count on my biorhythms to prop up my chronorhythms, assisting me in awakening, even though I can’t always fall asleep “on schedule” so sleep debt accumulates as time goes by. And, after a lifetime of Morning Nazis, I truly despise people who think their own scheduling convenience is so damned important they are willing to throw my entire life into a tailspin for the following three weeks while I rephase because they refuse to understand the problem. (pardon my “French”)

      Landlords and conference planners are the absolute WORST – they push boundaries to the point I want to slap them. I say, “Never before noon, 2pm is better”. They say, “Well this is really important so how about a compromise at 11?” — like it matters to the plumber whose apt. he services when – or to the participants which order the speakers are in. Why is that a compromise when you get scheduling ease and I get three weeks of not being able to schedule at all?

      btw- approx. 20% of the public are what science calls “late chronotypes.” — ie. night owls – perfectly normal, but not to the DSPS/DSPD degree (which are often called “extreme” owls)

      Thanks for your interest – and your empathy.
      xx,
      mgh

      Like

      • lwbut says:

        “Morning Nazi’s” – I LOVE it!! 🙂 <3… but if you felt the need to apologise for your French in any part of your reply then i might need to exercise (excuse my trump) Extreme Vetting on anything i say before i send it in future out of fear of offense! 😉 Us Aussies tend to slip the odd expletive into a phrase as naturally as a Koala climbs a gum tree 😉

        20% are night owls huh? Would that study have been based upon US participants? it is my experience that the US has a far higher proportion of excessively delayed sleepers and late-night diners than my own 2 countries (was born in the UK), something recently reinforced by Scrotus's Tuesday speech to congress, which as far as i can tell, began around 10 pm local time?? You would be highly unlikely to find an Australian politician, let alone the Leader who would not be in bed asleep by 10 pm. One starting a major speech at that time?? You'd have more chance of being woken up by a butterfly flitting past your bedroom door! 🙂

        Liked by 1 person

        • No disrespect to those who truly suffered during WWII intended – but today’s folks with righteous judgment about the best time to wake and sleep – and how those of us who don’t toe their maginot lines are somehow bad, wrong and awful — DESERVE the epithet — IMHO. 🙂

          Glad you approve.
          xx,
          mgh

          Like

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  5. Grandtrines says:

    Reblogged this on Lost Dudeist Astrology.

    Liked by 1 person

    • I thought you’d recognize yourself in this one, but I was thinking you’d post it to your Dreams board. Whichever, I’m truly grateful.
      xx,
      mgh

      Liked by 1 person

      • Grandtrines says:

        You are welcome! Yes, that pretty much nails it!

        Liked by 1 person

        • I’m so sorry – do you know about the Nightowls list? ALL folks with sleep disorders. I’ve been a digest member for years, but I’m no longer active – couldn’t keep up with the email. lol
          xx,
          mgh

          Like

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  9. Debbie says:

    Thank you so much for writing this article. I have a 22 yr. old son who you described to a T! He has been diagnosed circadian sleep disorder and also has parasomnia and insomnia. One thing that no doctor has ever been able to help us with is upon physically trying to wake him up he gets combative, even if it’s just a nice gentle touch. He’s even had a wrestling match with my husband for 15 minutes and when they stopped he just stayed asleep in the middle of the floor. When he finally woke up he asked why he was on the floor and his whole body ached. He didn’t remember any of it. Tried spraying water on him once….never will do that again!!! So basically we can never physically wake him up because he gets combative. I have no problem letting him sleep normally, but it’s when there’s a really important thing he needs or wants to go to, but we can’t wake him up. Have you ever heard of anyone with this?

    Liked by 1 person

    • WOW! His sleeping subconscious is even more protective than MINE! It’s no small problem. Read through the other sleep articles here to help you better understand what’s going on.

      I’m assuming you’ve tried the usual – going to bed at the same time every night, attempting to awaken at the same time, even if you’ve only had a few hours of sleep (most impt. part, btw). He probably won’t be honest with you about usage, but be sure he knows that recreational smoking (cannibus – THC) is likely to make it even worse on the wake up end, even as it helps on the fall-asleep end (this from experience, btw.)

      He might awaken to sound if it is soft and pleasant, and gives him information – asking NO questions. Like, “Sweetheart, it’s nine o’clock and you wanted to be up to {whatever}. It’s time now, honey. You only have an hour before you need to leave”, etc. “Okay, I’ll be back in a few minutes to try again.” – wait – wait, repeat — with NO tone of irritation or pressure in your voice (which I know is so hard to do — but pressure will only make him dive deeper).

      If he takes stimulant medication, if you can awaken him long enough to get down his morning dose, then let him go back to sleep for 30 minutes, the whole process should be a whole lot easier (discuss this with him first – a sneak attack will backfire!). I worked with a young married couple on this and the sleep-normal wife’s response was, “You probably just saved my marriage.”

      Is his doctor solution-focused, cooperative and well-informed? Some of us find it really helps to SLEEP on meds to keep us from sleeping so deeply (in other words, usually meaning that we are medicated 24/7) – but that would mean an increase in his prescription that many doctors can only see as “habituation” or “drug seeking behavior.”

      I have also taken to falling asleep to a rotating line-up of 1- hr. Brain Science Podcasts that play all night, probably more loudly than the rest of you could sleep through. They keep my mind busy for the l-o-n-g period it sometimes takes me to drift off, and pull me to the surface as my bladder awakens me every “morning.” (My sleep-normal associates and friends like to try to tell me that sleeping to podcasts are part of the problem, btw – as if THEY knew better than a sixty-something woman who has had to deal with this her entire life what helped and what hurt!)

      I am also training my 1 year old Shih Tzu TinkerToy to lick me to awaken me – his reward is getting to go IMMEDIATELY outside – which means MY coat, shoes, etc. and his leash & collar have to be easy to handle, ready to go and close by – planning! He is starting to regulate HIS schedule, which helps to regulate mine. He will only let me sleep so long before he licks any exposed skin he can find!

      btw – 2 big glasses of water as you get in bed seems to help the camels — it makes it worse for those with micro-bladders like mine because we awaken during the night to go to the bathroom, which messes up circadian rhythms further.

      It will only get worse as he ages, most likely, so finding an effective solution NOW is his best shot at a successful life. It’s really hard to find a job that will work around this particular sleep disorder – or a partner who will be willing to continue to “do it right.” I’ve even PAID for wakers who became resentful and passive aggressive.

      Thanks for reading, and for taking the time to comment. Hope this helps a bit.
      xx,
      mgh

      Like

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  12. slangster.dk says:

    First of all I want to say wonderful blog! I had a quick question in which
    I’d like to ask if you don’t mind. I was interested to
    know how you center yourself and clear your head before writing.
    I have had a hard time clearing my mind in getting my ideas out there.
    I do take pleasure in writing but it just seems like the first 10 to 15 minutes are usually wasted simply just trying to figure out how to begin. Any
    suggestions or tips? Cheers!

    Liked by 1 person

    • Thanks for commenting (especially since you think the blog is wonderful ::grin::) — btw, I check websites and my policy is to remove links to sites that return 404 errors and all “marketing” sites (unless they are marketing specifically to the needs of my readers). Check to make sure your link works, then come back and comment again. I’m happy to leave working links to sites for sincere comments, but I’m aggressive about removing potential link-spam.

      NOW for your question. I’m collecting writing questions for a future article about writing an article, so this is a quickie:

      My #1-Tip is to consider that “wasted” time as part of your process and be nicer to yourself about it.

      Almost every writer I know has a “ritual” of some sort to ease them into their writing. I don’t think I know ANY writer who “slams” themselves into the process. I think it is amazing that you are able to move into the writing process after only a 10-15 minute transition period (because that’s what it is, actually).

      xx,
      mgh

      Like

  13. Reblogged this on Illicit By Nature and commented:
    Have a look at this post about a sleeping disorder *Hypernychthemeral Syndrome)! Very informative from someone who is actually living with this disorder as well as being ‘ADD Coach and trainer, one of the life coaching field’s earliest pioneers, founder of the first coaching school with an ADD-specific training curriculum’!! BRILLIANT blogger 🙂

    Liked by 1 person

  14. Hello 🙂 Just to let you know I have decided to do one a night and your reference to this post made me pick this one first out of the several I bookmarked to read!

    Well where do I begin! I can definitely understand where you are coming from when you say “Not only are most of the judgements about ADD – and sleep disorders – borne of ignorance and flat out wrong, they delay the development of systems and strategies that will help a sufferer learn to cope, increasing the likelihood that a client or loved-one will give up hope long before they can fashion a life worth living.” It must be incredibly hard! Especially as it took so long for you to get diagnosed. Well done by the way on being the “founder of the first coaching school with an ADD-specific training curriculum”! WHAT AN ACHIEVEMENT 😀

    Overall I thought it was brilliantly written (so good I had to reblog it!) I loved how user friendly your writing was, even for me a naive 21 year old with no medical background. Your reference back to your self shed so much light on what is such a variable and hard to manage disorder. I am so sorry for you to have to go through what you have. When I read the part where you referenced how hard it is to have a relationship and work I felt a familiar pang I sometimes feel (no where near the same level though!) It must be (I know I have said these words) incredibly hard.

    Maybe I do as you say have something similar or along the lines of a sleep disorder as you suggested. I will have a chat to my GP when I next go in. (A monthly visit it seems to be at the moment.) There are parts of what you wrote about that I can most certainly relate to! Especially about coming to terms with the fact that I can not work on someone else schedule, which is very daunting and I praise you so much for being able to have done it. I also feel like we are touching the same ground when you mention that when you need to crash you crash. I get completely overwhelmed by the power as well and just shut down. It could be for a few hours, or five mins but I am dead to the world.

    I enjoyed the fire story and the Christmas story as well! Although in a sense they are also less humorous and more worrying!! So I thought I would sign off with a quote from your work “it is not necessary to function perfectly to create a life of ongoing accomplishment.” I love that.

    Thank you SO much for pointing me over here. Going to love getting through these.

    Louise x x

    (In response to your other comment on my site, the wine in the bath was a great plan, but indeed probably best to resist when tired… I had an imagine of accidentally knocking the wine in the water which would probably start a panic attack my end haha!)

    Liked by 1 person

    • I can’t BELIEVE I missed this comment – it never appeared in my notifications. Yours is *exactly* the response I hoped to elicit in readers. I’ve said this many times on your excellent blog about your own struggles with depression, but I want to repeat it here:

      You are UNUSUALLY empathetic as a result of your own challenges, and UNUSUALLY mature in your thinking for one so young. You are clearly “an old soul.”

      I doubt you’ll find my response any time soon, since you are getting ready for the trip of a lifetime, but a response as thoughtful as yours deserves a response.

      You are AMAZING – and I’m so glad I “met” you over the internet. Some day I hope we’ll meet in person.

      MUCH love & admiration,
      mgh

      PS. Thanks for all the acknowledgment – you are the wind beneath my wings today.

      Like

  15. Pam Augspurger says:

    You could be talking about me. Diagnosed with ADD at 48. DSPS diagnosis days after my 51st birthday this year. I have lived with this struggle nearly as long as I can remember.

    I was the kid who couldn’t go to sleep. As a teenager I often commented that I would make an excellent 2nd shift worker. My husband and I have been married 26 years. When we were dating and I’d start cleaning or something at 11 pm, he couldn’t believe it.

    It’s not like its new. It just has a name now. He heard the words come out of my doctor’s mouth and he still thinks I should be able to snap my fingers and change. I have my own business and moved it out of my house in January 2012 (a year before DSPS diagnosis) thinking that would “force” me to be “normal.”

    I’m tired of the fight. If I could work and live on my schedule, I’d be fine. But instead, I mentally beat myself up everyday (just like always) for being the “weirdo” that I am. I get no support from my husband. I don’t know what to do or where to turn. “Overtures of Overcompensation” is me to a T! I work at my shop late into the night when I’m at my best while my husband, who has gone to bed by 9 or 10, has managed to make me feel completely dysfunctional yet again.

    Liked by 1 person

    • Welcome – and thanks for your comment.

      I am always happy/sad/furious to know I’m not the ONLY one with this struggle — but the thing that makes me **furious** is hearing about the total lack of empathy from those who CLAIM to care about us.

      I can’t tell you not to take it in with any sincerity – because I know how it affects ME every darn time somebody thinks they have a quick fix for something I have dealt with since I was a kid.

      I have finally reached the point where I no longer beat myself up because they **refuse** to learn enough ‘to at least TRY to understand — and I am reaching the age where I don’t know how much longer I can keep from beating THEM up (only half kidding –really!).

      STILL – we have to deal with earthling time, and we have so few “overlap” hours to get to stores, etc. when they’re open — and that’s harder than anybody who doesn’t have to deal with this could EVER understand.

      My storage space is waiting for me to come give them money, so I must run before THEY close, but I wanted to take a moment simply to say COURAGE CAMILLE – you are *not* the only one.

      Print this article and read it TO him.

      If he refuses to *at least* listen, tell him if he ever wants to come near you physically AGAIN, he’d BETTER to listen. (sorry – sometimes it seems like the only card we have to play — I mean, really! Who feels loving toward someone who acts so UNloving toward us — and physical intimacy is an expression of LOVE, not a service granted simply because we marry)

      See how I get when I’m furious? And in print, even. ENOUGH already, right? They can’t fix it, and they may not ever really be able to understand it, but they CAN and MUST believe what we say and empathize with how hard it would be if they had to deal with it.

      xx,
      mgh

      Like

      • Pam Augspurger says:

        A woman after my own heart, you are! Beat THEM up! Good one! I sent him several items today. Don’t know if he read them. We went to dinner with friends and he went straight to bed when we got home. I even tried roll reversal the other day. I asked him what if he had to be on my schedule? Could he? Would he be able to? He gave me a resounding no. And so it goes….nothing changed. Why does it seem worse the older I get and the older my children get? (They are 21 and 17). I guess I plowed through their early years on some sort of auto-pilot. I use to work outside the home. I was Late. Everyday. Now I know why. I’d get off at 4:30, but I was usually just getting cranked up and would work late. And now I know why. They got the hours from me. Just not 8-4:30.

        Even after diagnosis, I still catch myself saying “tomorrow is the day I change…” Even though I may get up in the morning at what I consider reasonable, I “piddle” until I have completely lost track of time. I have no concept of time. Period! I blame that on the ADD. If I went straight to shower when I got up, it would be better. But something always distracts me and there goes the time again. I know I’m rambling but it’s just hard to explain that time between getting out of bed and actually getting to my shop. That time that gets away from me.

        I live my life behind at my shop. I end up finishing everything last minute. It’s like my brain can’t fathom finishing anything ahead of schedule. I spend my work life putting out the fire in front of me or greasing the squeaky wheel. That leads to all-nighters and sleep deprevation. Speaking of sleep. I sleep great. I sleep great when the world lets me sleep on my God-given schedule.

        I cried when my doctor diagnosed me. It was quite by accident and I didn’t even know my doctor was certified in sleep disorders! He doesn’t want to mess with my bedtime. He tried to get me on Nuvigil to get thru sleep inertia in the morning. Insurance won’t let me have it. They require a sleep study. I don’t need a sleep study people! I SLEEP JUST FINE!

        Thank you for listening. I’m glad I found you Madelyn!

        Liked by 1 person

        • Of course we BOTH realize that beating THEM up is not really the answer – but it sure makes us feel better momentarily to share fantasies of doing so, doesn’t it?

          I’ll bet you are like me, however. If those same people needed our emotional support – like if the “karma-engine” of the universe would play out right before our eyes in real time – we’d be the FIRST to step up to offer the kindness of empathy. Good news/bad news, huh?

          I wish I knew what WOULD change the shame and blame dynamic so those “hit back” fantasies never got triggered in the first place!!

          It does seem to me that we women, as a society, need to do a better job of “installing” empathy in our boys. If we continue to raise boy children with the “tough love – stiff upper lip – big boys don’t cry” school of thought, what do we expect will be their response to others when they grow up?

          Girl children may or may not be more “empathetic” by brain-design, but I observe that we – almost universally – raise little girls to think about the impact of our words and actions on the feelings of others, to the extent that it practically becomes second nature NOT to “hit back.”

          That’s GREAT for the men (and others who seem to lack the empathy response), but it puts *us* at a disadvantage when it comes time to defend ourselves whenever they are insensitive toward us.

          We can’t seem to figure out what to say that won’t seem insensitive toward them – at least not in the moment. So we eat it and ruminate. Lousy for us, lousy for our relationships.

          I blog, hoping to create a community that can share with those who need the info — hoping fervently that just MAYBE a few of the formerly closed minds might open a crack about the trials and tribulations of brain-styles that are different from the supposed “norms” when we are forced to attempt to live according to their “rules.”

          I’m glad you have now become one of the community.
          Thanks for sharing your thoughts with me and with all. Keep coming back – and pass the word!!

          xx,
          mgh

          Like

          • Pam Augspurger says:

            I know I’m making him sound terrible. He’s not. He’s just terrible about understanding this major issue. He’s such a good man and my biggest supporter. Except for this. This that is and has been (secretly) a major battle in my life nearly forever. He read the articles I sent him yesterday. I think it’s still not sinking in. I asked him if he gained any insight. He said yes. And he left to go blow leaves….

            My son (17) is my mini-me. ADD with a hint of DSPS. He and I are so much alike it’s not funny. He does TERRIBLE in his first class of the day at school. I met with his guidance counselor the other day and told him about DSPS. He’d never heard of it. Interesting. I’m thinking of sending him more info on it since he’s a high school guidance counselor and it’s not uncommon among teenagers. My prayer is my son outgrows his. He is actually much better than when he was younger. He’s able to go to sleep much earlier. He doesn’t drink sodas but back when he did, he could drink a Mountain Dew and go right to sleep. Just like I can drink coffee and go right to sleep.

            My daughter (21) is my biggest advocate. Her support right now is really helping me through this “get it through your thick heads people this is how I am” phase. I DON’T feel like I have to hide it as much. I tell people this is why I’m this way! Deal with it! This is my normal! Sorry it doesn’t fit yours! She is majoring in psychology. Perfect fit for her. If/when she goes on to grad school, I may encourage coping with DSPS, or something beneficial to us, as a research topic for her. She wants to be a high school guidance counselor. Perfect place to start!

            So Madelyn, my children are just as you say! My son, my mini-me, gets out of school early every other day. “Why haven’t you gone to work yet, Mom?” Really??? And so it goes….

            Thank you again for being so responsive! I’d say you have no idea how much this helps, but it know you do!

            Liked by 1 person

            • JUST SO YOU KNOW — I would never believe your husband was a black hat across the board — or you would NEVER have been attracted to him in the first place. OF COURSE he has wonderful qualities or you’d be outa’ there!

              And I know YOU know that too. But that does not mean that there’s not room for improvement, or that some of the things he says and does are not particularly loving or kind.

              IT IS MY FIRM BELIEF that *my* reminding others of the good qualities of their loved ones when they need to focus on what is NOT working is not only ineffective, it magnifies the harm.

              In my experience, once an individual feels heard and understood, he or she will come to those “in his defense” points of view without my two cents urging him or her to do so before they’ve had a chance to feel HEARD and to process the situation.

              And LOOK! You just proved me right! Thanks again for ringing in.
              xx,
              mgh

              Like

  16. “I seem to have a paradoxical relationship to light.” –Well said!

    Sooo many of your sleep (or not) experiences sound so very familiar. I can, for example, sleep through any number of alarm clocks, clock radios, spotlights-on-a-timer, fire fighters running up and down the stairs and even wake-up calls — all at once. (Now retired and mostly sleeping on my own schedule, this does happen less often, mainly because I seldom use an alarm clock.)

    Getting anyone to BELIEVE this, much less UNDERSTAND it, is very nearly impossible. That does, of course, include doctors.

    Your (sometimes) treatment of DSPS and Non-24 as though they are the same thing is confusing to me. I think I’ll check Wikipedia to see if the difference is made clear there. I do have DSPS and I do NOT (thankfully!) have Non-24. BTW, DSPS has been “up-rated” to a disorder rather than a syndrome and now is DSPD, but I’m sure those of us who know what it is will still be calling it DSPS years from now.

    Speaking of ADHD and circadian rhythms, I read an interesting Israeli study some time back. (I’ve googled every way I can think of, and haven’t been able to find it again.) The subjects were over 100 children, age 6-12, who were diagnosed with ADHD or whose parents or teachers thought they should have that diagnosis. They all cut out any ADHD treatments and instead were treated with melatonin for DSPS for a few months. A fair number of them (wish I could remember the percentage) lost their ADHD diagnoses and when school started again after vacation, the parents of some of them asked for the DSPS treatment to be continued.

    A big thank you to commenter Andrew Kinsella (11 October 2012) for the link to Scicurious’ “Adult attention-deficit hyperactivity disorder is associated with alterations in circadian rhythms …”
    –Very interesting, as is much of the comment section.

    Liked by 1 person

    • be back – need to go backstage and edit this comment — or I will lose my THIRD reply to you as well.

      Like

    • BackStage no help! THIRD try disappeared as I was getting to the end and had to move off the page to another tab for a reference.

      I think WordPress isn’t working well since last nite – at least not for ME. I will give their tech a day or to to find and fix, and will come back and try once more. Sorry – know that I *always* appreciate comments, and it makes my day when I see one of yours.
      xx,
      mgh

      Like

    • I’m eager to hear what you find out about the distinction between DSPS/DSPD (upgraded or simply renamed?). Please come back and share (maybe as a guest post???)

      I was originally told that N-24 was a “type” of delayed sleep phase syndrome — I suppose because most of the sufferers are skewed to the dark time — so I ID my chrono-disorder most often as DSPS/N-24. Even when I am able to stabilize my chronorhythms for a period, my body tends to do best (and I remain stable for a longer period) on a “delayed” schedule (bedtime: 4AM, wake-up: noon).

      OTHER READERS:
      ===============

      N-24 refers to an “internal clock” set to a day-length that is (generally) longer than the so-called normal 24 hours that works with the length of a single “day” on planet earth.

      Delayed Sleep Phase refers to a brain that is set to be cognitively alert later in the day and fuzzy in the morning hours, usually including a slow “boot” – taking an unusually long time to get going on awakening.

      xx,
      mgh

      Like

      • READERS: EXCELLENT comment below from someone who knows more than I do about this disorder – so don’t miss it! xx, mgh
        ~~~~~~~~~~~~~~~~~~~~~~~~~~~

        Hello again and thanks for answering.

        Not sure of the formal difference between Syndrome & Disorder. As I understand it (without looking it up), Syndrome is a collection of symptoms. Disorder sounds more solid, I think.

        Delayed Sleep Phase Disorder (DSPS or DSPD) and Non-24-Hour Sleep-Wake Disorder (Non-24 or just N24) do seem to be closely related, and the former has been known to turn into the latter. Neither is curable and they are only sometimes somewhat manageable.

        DSPD, which I have, means a “hard-wired” sleep period of about 4 a.m. to noon, give or take a couple of hours.

        Some people’s sleep schedules are flexible, maybe _preferring_ to sleep 4-to-noon, but they can without much trouble work a daytime schedule when they need to. DSPD is more inflexible. It can be downright impossible to wake up early and, if we do, we function very poorly for the first few hours. Regularly forcing early awakening leads to mental and physical problems/diseases. (And parents, spouses or roommates who try to wake us early often/usually have to put up with verbal or physical abuse which we don’t even remember later. That’s hard on relationships.)

        “Normal” people have a circadian (about-a-day) period on average of 24.2 hours. (That some people still say it’s 25 hours is a misunderstanding from the way research was conducted many years ago. It’s a die-hard myth.) The cycle is normally adjusted (entrained) to 24 hours, mostly by daylight upon awakening.

        DSPD-people are normal in this respect! We sleep and wake at the “wrong” time, but usually at about the same time every day. We _do_ entrain to the 24-hour period in nature (on planet earth, as you put it).

        Non-24 is much more debilitating and it usually makes any kind of employment impossible. The circadian period is longer (or, theoretically, shorter) than 24 hours and it does _not_ entrain. It may be just a bit longer, as it often is in totally blind people, or it may be 1, 2, or 3 or more hours too long.

        For example, a person with Non-24 may go to sleep at midnight tonight, at 1 a.m. tomorrow night, then 2 a.m., 3 a.m., 4 a.m. and all the way ’round the clock, one hour later each “day”. A person with this regular a schedule may be able to make an appointment for some specific time next week. Unfortunately, for many it won’t be exactly that regular.

        “Normal” people wake up about 2 hours after their body temperature minimum, often estimated at 5 a.m. for a 7 a.m. wake-up. DSPD people have a longer period between temperature minimum and wake, and Non-24 people a much longer period. We all generally need more than 8 hours of sleep.

        This was too long? Hope it made sense!

        Like

        • grrr – reply went into the ozone again – let me try backstage – xx, mgh

          Like

        • I am a WORD person, so probably not the one to say whether it was “too long.” My complaint is usually that comments and articles aren’t long *enough,* so things remain a tad fuzzy. For me, anyway, the length was PERFECTly appropriate.

          Not only did your info make sense, I believe many readers will understand your words better than mine. Unfortunately, it *might* be too long a comment for many of them (and not all read *any* comments).

          Any objections to my copying it into its own guest post, attributed to you – intro from me – links to wherever you choose? In that case, all I would need would be your attribution info.

          If you don’t want your ID public, I have no objections to your screen name as author. Let me know – and THANKS for the great comment.
          xx,
          mgh

          Like

          • Do with it as you like! Maybe cut some things at beginning and end. Screen name is OK. Link to my blog and to Circadian Sleep Disorders Network: http://www.circadiansleepdisorders.org.

            The words with _ before and after should be bolded (instead of the _ before and after). (Too bad we can’t do bold etc in comments. But at least paragraphs is possible here, unlike on comments on my blog.)

            From here I went to read about Mollie & her PDA. What an incredibly demanding situation for both parents & the beautiful child. Whew.

            Liked by 1 person

          • FYI: If you or anyone is interested, and has 40 min to spare, Peter Mansbach, President of Circadian Sleep Disorders Network just posted a video of his recent talk at the Narcolepsy Network conference on YouTube, at http://youtu.be/i70SqjCr-jY . It shows his slides as he reads his speech.

            It’s good about DSPD and Non-24. Considering the audience, it compares these disorders some to Narcolepsy, but that doesn’t detract.

            Liked by 1 person

            • Listening NOW – his language is wonderfully clear as he reads – and most ADDers (etc) will find that the slides really help, especially if they have problem sustaining attention on the reading tone. (you can also download his “script” on the CSDN site, btw)

              INTERESTING to NOTE – the online learning folks are now complaining about “redundancy” being anti-learning (i.e., don’t put content up to be read when you are saying it) — which is a misunderstanding of neurology and “multi-tasking” studies that is at risk of proliferating wildly!

              We ALL intake info better when multiple modalities are employed — the problem results when “blinking” etc. pulls focus in a manner that is non-native to the person attempting to learn.

              The visual learners seem to be in the majority of those putting together online curriculums (ie., graphics, not written words – which are cognitive) AND YET they have spoken words in the soundtracks of their learning modules, skipping right over the reality than hearing is generally reported to be the weakest modality in the neurodiverse.

              The implications break my heart – one MORE arena where there will be lack of understanding for those of us who don’t fit neatly into the “majority rules” boxes!

              ANYWAY – thanks so much for the heads up about this resource.
              xx,
              mgh

              Like

        • A good and very simplified description of a (hypothetical) sufferer of DSPS and one with Non-24 can be found at http://www.circadiansleepdisorders.org/description.php. They are quite distinct in their effect (thought probably not in their underlying causes). From what I read above, it sounds like Madelyn is DSPS.

          Like

          • READERS: Peter is the president of the Circadian Sleep Disorders Network, the subject of at least one of the articles in the Sleep Series and linked to most of them – click HERE for Everything you ever wanted to know about SLEEP — links to the entire Sleep Series
            ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
            Thanks Peter – what a doll you are to take the time to ring in here – and thanks for the link to the distinction info.

            Delayed2sleep posted the link to your talk for the Narcolepsy conference — extremely well done on many levels. My compliments – and gratitude on behalf of ALL of us with sleep timing disorders of any sort.

            An article in draft for the ongoing Sleep Series here on ADDandSoMuchMore.com will review the highlights for my readers, linked to YouTube Video and all references on CSD.

            I hear you about my own dx – I DO fit the description of DSPS/DSPD in terms of “late eveningness” — except that my “day” revolves around the earth day like N24 – MUCH longer time awake than the “standard” 16 hrs before I can sleep again, although I tend to sleep 8-9.5 hours before I awaken naturally (if not actually ready for bear). I also sleep VERY deeply, and don’t wake to sound – quite the problem.

            It has been my experience of sleep since I was quite young – pre-coffee, pre-ADD meds. (which actually help me fall asleep, btw) And it seems not to respond to any of the interventions I’ve tried – light, meds, Lakien protocol. I’m actually considering gluten sensitivity – haven’t tried THAT yet!

            AGAIN – thanks for taking the time to comment – and for everything else you do for ALL of us.
            xx,
            mgh

            Like

  17. andy wolmer says:

    great information

    Liked by 1 person

  18. Night Owl Ali says:

    I could have written this myself. I had DSPS which converted to N24 and although I don’t have ADD, I have a lot of ADD tendencies, and compensate much in the same way ADDers do.

    Liked by 1 person

    • I have a love/hate relationship with the fact that you relate so closely to this article. I’m glad you don’t feel alone, and FURIOUS that you and I are not alone in what we must find a way to deal with, but ARE alone in scientific focus on getting us some help.

      As I’m sure you already know, there are MANY too many of us in the sighted community who struggle with N24 – supposedly rare unless one is blind.

      WE NEED ATTENTION TO THIS ISSUE!! They will *never* locate the source of chronorhythm destabilazation problems in communities they NEVER study!

      RE: ADD tendencies —
      You don’t HAVE to have diagnostic ADD to have attentional issues. The reasons for our struggles are similar (i.e., the symptoms are the same whether we were BORN that way or not – and they are neurological, NOT psychological.)

      WHY? More metaphorical balls to juggle than our neurology can handle — for ANY reason. Reasons can include TBI – brain damage due to accident or stroke, increasingly complex lives due to our increasingly complex society, a slow-down in short-term memory as the result of decreased memory buffers as we age, AS WELL AS the sleep debt that accumulates for those of us attempting to coordinate with “earth-time” when our brain’s timing mechanism is set to Pluto or somewhere ::grin::.

      I’m thrilled to hear you allow yourself to use “ADD” compensations anyway. You’ll find a lot of them on ADDandSoMuchMore.com – that’s ONE reason why I maintain the blog.

      THANKS for taking the time to comment.

      xx,
      mgh

      Like

  19. Pingback: The Trials and Tribulations of Engaging Learning In An Owl With PDA | Pathological Demand Avoidance Syndrome an autistic spectrum disorder

  20. janesherwin says:

    Reblogged this on Pathological Demand Avoidance Syndrome an autistic spectrum disorder and commented:

    This is a brilliant blog written by an extremely intelligent and knowledgeable lady with ADD. She has written a fabulous set of posts regarding sleep disorders which I am finding extremely fascinating. ADD, ADHD, Autism, PDA and so on all appear to link, intertwine and cross paths with each other. A major problem for many of the people affected by these conditions is SLEEP !!! which also affects families and how we handle it. For an informative and unique insight please read the fabulous articles in ‘The Sleep Series’

    Liked by 1 person

    • Wow – thanks so much for the endorsement (& reblog)

      ONE MORE THING: Am taking a TeleClass from Dr. Charles Parker (CorePsych – BIG on IGg testing, diet & balancing hormones & trace elements – author The NEW ADHD Medication Rules) – only tonight heard, from another participant, about a book you might be interested in The Kid-Friendly ADHD & Autism Cookbook, Updated and Revised:… by Pamela Compart M.D.

      JUST ordered it, so haven’t read it, but the “look inside the book” Amazon preview encouraged me to purchase for the upfront content more than the recipes. There are several paperbacks used, btw. – fairly cheaply.

      HEY – almost dawn here, my bedtime ::groan:: G’nite.

      xx,
      mgh

      Like

  21. janesherwin says:

    MGH COMMENT: I have inserted “white space” into the comment below, since many ADDers have a tough time with long strings of sentences, and I want everyone to be able to read this comment. Comtent is not touched otherwise.
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    Hi Madelyn, thank you so much for directing me to this page.

    I had never thought of Mollie as actually having a sleep disorder that was affected by hormones, processing sunlight and so on. After reading your article it all makes so much sense.

    ADHD, ADD, Autism, PDA, Sensory Processing Disorder, Epilepsy, sleep disorders, Irlen Syndrome and Dyslexia all seem to intertwine with each other and rarely if ever travel alone. Mollie has at lot of ADHD type behaviours which I have presumed are all part and parcel of her PDA.

    A friend of mine, who is a learning disability nurse and behaviour therapist, has just written a brilliant paper exploring the concept of how hormones released by the mother during pregnancy can alter the development of the brain in the unborn fetus which may offer an explanation for many of the conditions above along with other interlinking and entwining factors.

    Sleep Disorders being another interlinking condition caused by a misfiring of connections / hormones in the brain does tie in with everything else about these conditions and also links in with her thesis.

    Sadly she is struggling to be taken seriously by other professionals but, like you she has a wealth of hands on experience and a very deep understanding of these neurological conditions.

    It would appear that Mollie has PDA, Sensory Processing Disorder, Irlen Syndrome (all diagnosed) and similar sleep disorders to yourself. This is a fab resource for all parents who need to understand the atypical sleep patterns of our children.

    I will reblog some of your posts if that is ok and introduce a sleep category on my blog. We have all assumed that our pda children are refusing sleep due to avoidance and difficulty with transition rather than viewing them as having a sleep disorder, this article makes things a lot clearer to understand.

    With Mollie I have very much taken a back seat with regard to her sleep and decided to just let her go with her own natural flow rather than interfere. Do you think this is the best option for me to take ??

    Liked by 1 person

    • be right back – need to draft in Word & paste – if you see only this, check back!
      ~~~~~~~~~~~~~~~~~~
      #1 – I LOVE reblogs and reposts and quotes – please link back when you do so, but I WANT this info to help anyone and everyone who might find it useful. Check out the entire Sleep series – lots of explanation there.

      #2 – Glad to see you’ve had your daughter Mollie tested for Irlen – too few know about it (or believe in it), but I have followed Irlen since the early days, and I am convinced it is a part of many profiles, and the theory just makes brain-based SENSE! I’m sure you’ve read about Donna Williams (Nobody Nowhere & Somebody Somewhere) — and know that results can be miraculous! I’m actually pursuing my own testing (after all these years!)

      #3 – for a hopeful read, if you haven’t already, pick up Lisa Blakemore-Brown’s Reweaving the Autistic Tapestry – Autism, Asperger Syndrome and ADHD (you can tell she’s from your side of the pond by the spelling!).

      Lisa was a good friend of someone who used to be one of my trainers (who was also an Irlen screener, btw), and was gracious enough to guest at an ADD Hour™ years ago [virtual], despite the fact that she had to do it at an ungodly hour for her. Good info, great come-from.

      #4 – My suggestion would be to involve Mollie in the sleep conversation – she’ll love the attention, and the idea that you are willing to follow her lead. Tell her you were in contact with a grown-up with her sleep schedule, and that [ I ] shared some of my struggles with the fact that [ I ] was awake when everyone else needed to sleep (use “needed” – empathy nudges are good, right?).

      Ask her about how it is for her, and affirm, affirm, affirm. (you might mention that I said everyone was different, so she doesn’t think you’re trying to push MY experience as anything Mollie “should” experience)

      Explain that I was “picky” about how I needed to be awakened and ask her if there is anything you can do to make things easier at either end of her day. Wait for her to ask for more before you tell her anything about light, etc. I’m sure you already know to tread lightly where the “advice” is concerned.

      Meanwhile, from the results you report on your blog, I’d say you are doing just the right thing for your daughter. As they say, the proof is in the pudding, and the fact that your relationship is becoming less combative and more loving says IT ALL. Trust your maternal instincts here, and read any info (even on this blog) with your “Mollie filters” firmly in place.

      Thanks for taking time to jump over here to read, and especially for your comment. Courage Camille, as they say in the theatre – I believe the worst just may be behind you.

      xx,
      mgh

      READERS: Mollie’s dx of PDA (Pathological Demand Avoidance Syndrome – on the Autistic Spectrum) is similar (but NOT the same as ODD – Oppositional Defiant Disorder, which is an ADD Comorbid). Jump over to Jane’s blog to read about it “from the trenches,” if you are unaware – good spectrum links there too)

      No doubt many differentials miss PDA for lack of awareness and/or knowledge.

      Like

  22. Sally says:

    Good day! I know this is kind of off topic but I was wondering which blog platform are
    you using for this site? I’m getting sick and tired of WordPress because I’ve had issues
    with hackers and I’m looking at alternatives for another platform. I would be fantastic if you could point me in the direction of a good platform.

    Like

    • Can’t help you there – this is a WordPress blog – but if you enable Akismet it blocks link-spam, which can be a gateway for hackers, I’ve been told. I use a Mac – that helps too.

      I don’t understand the hacker (or link-spam) mindset, but I do understand they are RELENTLESS, so I’m not sure ANY platform is impervious. Good luck – and if you find anything really great, come back and share.
      xx,
      mgh

      Like

  23. Hi Madelyn,
    great post.
    So few doctors understand that this is an integral part of the problem for so many ADDers- though Thomas Brown lays out the issue of regulating alertness so clearly in his discussion of ADD ( ADD The Unfocussed Mind In Adults and Children).

    I currently have been off work some months due to various problems and my circadian patterns really have gone to hell- so I can totally relate to what you are saying.

    You might like to look at this little study, which nicely demonstrates the loss of normal circadian rhytym in Cortisol and Melatonin in ADDers.
    Considering that cortisol is a key hormone in preparing us to get up and go at the start of the day- and is MEANT to peak before wake up time- it is clear that we have a problem.

    This pattern of disrupted cortisol rhythm is part of the “adrenal fatigue” syndrome- so may be secondary to the stress our ADD causes us.

    Anyhow- here is the link:
    http://scientopia.org/blogs/scicurious/2012/10/03/marching-to-a-different-beat-adhd-and-circadian-rhythms/

    Liked by 1 person

    • Madelyn Griffith-Haynie, MCC, SCAC says:

      Hey – GREAT to hear from you, but ZERO time right now – memorial service stuff must be DONE tomorrow & we are at the effect of everyone else’s “last minute” ADD (next life, dear God, neurotypical friends – just a FEW, ok?)

      Will be back to give your wonderful comment the attention it deserves as soon as my molecules regroup into neurons! (probably Wed. — maybe sooner, but not by much!)

      GREAT to have you back!

      xoxoxoxo,
      mgh

      PS – see subsequent comment #2

      Like

    • Better LATE than never – I DID check out your link, and left several info-dense comments on the site, but never let you know. I’ve also put the link INTO the article itself. Thanks so much for letting me know it existed.
      xx,
      mgh

      Like

  24. Hi there! Thanks very much for linking to my blog.

    Liked by 1 person

    • Madelyn Griffith-Haynie, MCC, SCAC says:

      You’re very welcome – good content.
      xx,
      mgh

      Like

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