Pondering the Elusiveness of Sleepiness at NSF’s Sleep Health & Safety Conference

Last week, I attended the National Sleep Foundation‘s Sleep Health & Safety Conference here in Washington, DC.  The conference featured a Public Health & Safety Track and a Health Care Professional Track.  Reviewing the lists of speakers – both sessions sounded fascinating, so I spent one day on each track.  Both mornings, keynote speakers gave exciting informative presentations. And if all this wasn’t enough – there was a fabulous Annual Awards Dinner!

Over the course of the conference, I started to wonder about something I’d never thought much about  before – “Why is sleepiness so elusive?”   It seems that many people have a hard time identifying the feeling of sleepiness in themselves and determining when its “excessive.”

I’m guilty person #1! I didn’t recognize my own excessive sleepiness for many years.  As my narcolepsy developed, I misinterpreted my sleepiness as lack of willpower and concentration. When I kept falling asleep reading cases for law school, I thought I’d lost my passion and determination to succeed.  My family saw my sleepiness are poor manners, as I often fell asleep upon arriving at family gatherings.

It was only when I started having trouble driving 15 minutes in the morning after a full night’s sleep that I realized my sleepiness as sleepiness.  Did it need to get this bad? Looking back, I’m ashamed of how out-of-touch I was to have missed so many earlier signs.  I used to think this lack of awareness was a “personal problem.” I thought maybe I was just terrible at interpreting the subtle rhythms and needs of my body.

However, multiple speakers at the NSF conference raised lack of awareness of sleepiness as an issue facing sleep health and safety in our society.

In a presentation about diagnosing obstructive sleep apnea (a group of sleep disorders affecting at least 5% of our population), one presenter pointed out that many patients with obstructive sleep apnea (OSA) do not present with “excessive daytime sleepiness” – although this is considered a main symptom of OSA.  Instead, people complain of fatigue, tiredness, and lack of energy and concentration. (I’ve also heard of cases in which anger and irritability were manifestations of sleepiness associated with OSA.)  Doctors must be savvy to interpret their patients’ concerns and inquire about sleep habits and sleepiness – as many people with sleep disorders are NOT coming in reporting “I am excessively sleepy and think I have a sleep disorder.”

In a fascinating presentation about the impact of sleep deprivation on distractibility – the speaker discussed various “signs” of sleepiness. She pointed out that the things we usually associate with sleepiness – such as droopy eyelids and head-nods (and I’d add, yawning) are not always good indicators of how sleepy we are. A person may have their eyes wide open and be sitting up with great posture, yet be very far mentally gone (the speaker had some great evidence supporting this).  This is especially concerning in the area of drowsy driving, because if one waits for typical indicators (heavy eyes or head-nods) before thinking “maybe I shouldn’t be driving,” it could be too late.  This presentation made me think – it would be better to recognize earlier more subtle signs of sleepiness.

But what are those earlier more subtle sensations of sleepiness?  What does sleepiness REALLY feel like? Since my narcolepsy diagnosis, I’ve slowly become in-touch with the sensations of sleepiness.  Also, as a writer describing my experience with narcolepsy in a memoir, I’ve forced myself to try and pinpoint the feelings.

For me – sleepiness begins as an aching in my neck and shoulders.  It’s a subtle discomfort I used to associate with hunger, but now most of the time I know its impending sleepiness.  The first outward things I do to combat this are to reach my arm around to rub my shoulders and stretch my neck from side-to-side. Next I feel a subtle weight on my head and nausea in my body.

So I pose this question to you – what is your first sign of sleepiness? Can you identify what early warning signs you have that sleepiness is coming?  Perhaps if we could better describe what sleepiness feels like – we may help others identify the early signs of a sleep disorder or drowsy driving.

In closing, a few photos from the NSF Sleep Health & Safety Conference. I highly recommend this for anyone interested – next year’s conference is scheduled for March 2-3, 2012 in Washington DC!

Packed Ballroom for the Public Health & Safety Track
REM Runner taking a break from the action
NSF Annual Awards Dinner

Also, a big thank you to Patricia Higgins, President of Narcolepsy Network for her energy and enthusiasm throughout the conference. It was so great to be able to talk ideas out and promote awareness of narcolepsy together!


  1. The Dreamer on March 23, 2011 at 5:03 pm

    I'm still not really sure what sleepiness is or isn't, though I certainly feel that what I'm feeling is excessive. (and its a whole lot worse when I'm not taking my Provigil.)

    Though limiting my activities because of it, gives doctors reason to say it isn't sleepiness but that I'm crazy. But, it isn't the actual activity that is impacted by the sleepiness…its the fact that I want to be able to safely make it home afterwards.

    Late one evening coming home from an activity…I came up to an intersection that has an audible alert added audible alerts. The light changed to indicate traffic to go from right to left across the intersection…but I heard the sound so I went forward. Stopped just before the middle and the traffic flow….that didn't seem to care that I was about to cut through it…while slowing inching forward I kept wondering why there was so much more traffic going across in front of me….

    My parents never thought of me as having a sleeping problem, I could sleep through anything…which was when they took us on car trips. Not so good when I'm the one behind the wheel, and I'm doing 120km/hr….

    I think the concussion from my big metal coffee mug was the main extent of my injury, though the small town x-ray of my neck wasn't too clear….so that required transfers and other doctors to look me over around C4/C5. Though I never met any at any time then (or any subsequent ER visits…)

    sleep doc also says I'm crazy for saying I sometimes have trouble falling asleep or staying asleep, because I'm wearing my cpap mask while I'm awake trying to fall asleep or stay asleep. cpap compliance means I'm not having insomnia…. just as a normal MSLT means my cataplexy isn't cataplexy.

    Maybe the neurologist I'm seeing on Monday will tell me what's what.

  2. Nancy U on March 23, 2011 at 6:08 pm

    I don't think that anyone has defined sleep well. We're all cycling daily through a continuum between 'totally awake' and 'dead to the world'. Our responsibility is finding where the line is for 'impairment' and trying to notice the symptom right before that. For me, it is the first time my eyes go 'fuzzy'. After that I start losing concentration. Best to quit when the eyes tell me to.

  3. Main Man on March 23, 2011 at 10:54 pm

    Great post and intensely awesome insights. I think for me, the first sign of sleepiness is lack of focus/mental fuzziness. Like you, I pushed through years of berating myself for my lack of will power (and downright laziness), only to realize that I was battling sleepiness. Your entire post reminds me how excited I was at the 2010 Narcolepsy Network conference when Dr. Michael Twery, NIH Director of the National Center on Sleep Disorders Research, mentioned that they were developing a national health directive on sleep.

  4. Charlie on March 25, 2011 at 9:26 am

    Fleeting thoughts
    Anxious feelings
    Hope I don’t fall asleep

    Feelings returning
    Head clearing
    I won’t fall asleep

    Everything slowing
    Hearts racing
    Hope I don’t fall asleep

    I can fight this
    Healthy body
    I won’t fall asleep

    Time mucky
    Words slinging
    Hope I don’t fall asleep

    Pride rising
    I’m winning
    I won’t fall asleep

    Why me
    Why is this happening
    Hope I don’t fall asleep

    It’s not so bad
    How long will it last
    I won’t fall asleep

    Eyes flickering
    Legs shaking
    Hope I don’t fall asleep

    Bighting lip
    Pinching arm
    I won’t fall asleep

    Who’s watching
    Anybody noticing
    Hope I don’t fall asleep

    Keep on fighting
    Just a little longer
    I won’t fall asleep

    Eyes closing
    Darkness coming
    I’m falling asleep

  5. Hopefully Awake on March 26, 2011 at 11:21 pm

    Hi Julie,

    Before being diagnosed, I really never paid attention to any signs of falling asleep. All I can remember is that whenever I was driving on the highway, everything would go black as I was driving and I would hear a voice yelling “WAKE UP, WAKE UP.” It was like a guardian angel was watching over me because there was no one in the car.

    Now I know when my attacks are coming because my thinking starts to get foggy and it feels like a cloud is building up in front of me and when this happens now, all I keep saying is, “Not Now, Not Now.” All of a sudden I will be staring off into space and fight with my brain to stay awake, if someone is around me they sometimes bring me back by asking me if I am okay. This usually happens between the hours of 2 to 5 p.m. or anytime after 7 p.m.

    I have also found that stress causes an increased likelihood that I will be extremely tired throughout the entire day even though I have taken my medicine. My stress has been elevated greatly the past couple of months and it is getting very difficult to deal with symptoms. I feel like I am slipping into depression, which is an unknown territory for me.


    Hopefully Awake

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