My Life With a Circadian Rhythm Disorder and Micro-Sleeps

Black-outs, Gray-outs, Micro-sleeps and Naps

I awoke suddenly.  I hurt worse than I had ever been hurt before.  Blood was running from my right hand where the saw blade had cut deeply into my ring finger and ripped the ball of my thumb off.  I grabbed a shop towel, wrapped it around my hand, turned the saw off, and headed into the house dripping blood.  I later cleaned the spots off the floor in the house but the spots on the shop floor remain as memoranda.  Eventually my footsteps will wear them off.

After getting patched up in the emergency room, I returned to the shop to figure out what happened.  I had no memory of the accident.  Only of the sudden pain and the instantaneous awareness.  I told the emergency room nurses that I had blanked out.  I had to reconstruct the accident from what I was doing and what was left on the saw.  I was cutting a number of identical pieces of ½” plywood to width to make a set of drawers.  The stock was stacked on my right side and as each cut was made that piece was stacked on the left side.  At the end of each cut, I picked the scrap up with my left hand and threw it in the trash can.  No problem.  But I picked up the cut piece with my right hand and in moving it to the left my hand passed over the blade.  After setting the piece down on the left and returning to the right, it passed over the blade again.  My hand always went at least 10-12” above the blade.  No problem.  I had done this for about 55 years.  So, what happened?

The scrap was in the trash and the cut piece was on the stack on the left.  There was no wood in the cutting area so I had completed the cut, tossed the scrap and stacked the finished piece.  I have no memory of placing the cut piece on the stack.  Sometime between completing the cut, which I remember, and moving the cut piece, I blanked out.  No hearing.  No vision.  I remained standing.  While moving my hand back to the right, I lost muscular control and my hand dropped onto the running saw blade.  As they say, the rest is history.  The ring finger recovered completely.  The thumb has reduced dexterity and is sensitive to pressure.  Doctors say 6 months to a year before I’ll know the extent of its recovery.

What happened?  I went to sleep for a short time – a micro-sleep.  The cause of micro-sleeps?  A circadian rhythm disorder.  Once I had these hypotheses, I could make sense of the entire history of my life.  My father most certainly was sleepy and it is probable that it was also a circadian rhythm disorder.  Narcolepsy was considered as a diagnosis, but as he did not present the full narcoleptic tetrad, that hypothesis was abandoned.  He was sleepy and had trouble hearing although his hearing tested normal.  I present the same symptoms.  There is, then, a likely genetic component to my disorder and while I display the excessive daytime sleepiness, I do not display cataplexy and do not assume to be a narcoleptic.  He was hard of hearing and from an early age I remember him wrapping his hand over an ear and asking “how’z that?”  His hearing tests were normal for his age.  Unexplained at the time, it is now diagnostic, pointing toward excessive daytime sleepiness and his sense of hearing turning off.  Hearing aids did not improve his hearing.  I present the same symptoms.

Daytime sleepiness problems were apparent early.  Mother said that before I went to school, I never stopped napping.  About the sixth grade, my father observed that I was groggy.  I remember back then the difficulty of being hereI was a long way away and it took an effort of will to be here.  There were two times when here went farther away. On two evenings a year apart, when I had to remain active beyond my bedtime, my eyesight dwindled and darkened as if my vision had receded through a tunnel and left me behind.  My hearing diminished, and voices and background noise were far away.  I of the mind was far away from me of the body.  My consciousness was trying to turn off but I had to stay awake.  I wasn’t here and I wasn’t quite there but some dark groggy interim place.  I was alone and helpless, terrified, without words to tell of it and no one to tell it to.  I was 10 and 11.  I now call those events gray-outs and there have been more.

As time went on, I could feel that darkness takeover my life, varying somewhat throughout the day as the ratio of awake and asleep changed.  By my sophomore year of high school, I knew that I was in trouble.  I could not read for a length of time and could not remember what I had just read.  While I could not complain about my mental state, I could complain about exhaustion.  I was tired all the time.  The docs could not find anything wrong.  The thyroid supplement they prescribed just in case had no effect.

I tried college but dropped out as many times as I enrolled.  My first year of college was residential but the dorms were some distance from the classrooms so I would be at the campus from breakfast through dinner.  Classes were in the mornings and afternoons were study.  I recall trying to read Moby Dick during those afternoons as my mind grayed out, attempting to go to sleep.  I had not yet re-discovered napping and I was in a public area, so I suffered intensely through the afternoons.  Insomnia, both sleep onset and late-night awakenings, became a serious problem and on top of excessive daytime sleepiness, a double whammy.

Of the next 3 years the less said the better.  But I got lucky.  In 1964 I began my electrical apprenticeship.  By then my diurnal pattern was one of initial sorta awake after breakfast decreasing steadily through the day.  Afternoons were, and still are, torture.  One afternoon I was the street-side ‘grunt’ for my journeyman working in a manhole.  My job was to supply him with tools or materials that he needed.  I was sitting on the manhole guard, barely conscious, vision diminished, hearing almost completely turned off, and I said to myself “I need this job.  I gotta get this under control.”  I still do not quite know how I do it.  I can sorta keep myself awake or at least wake myself up for a period of time by some kind of mental effort.  Even better is continuous reasonably active physical work.  So long as I have something to do, I keep moving, and moving helps me stay somewhat awake.  One younger buck once said “that old man never stops moving!”

Sometime in the late 1950’s Life magazine published an article on medical schools and the working conditions of interns in the teaching hospitals.  There was a photograph of an exhausted intern leaning against a corridor wall taking a break.   I live that all day every day of my life.

To interact with family and friends, I have to wake up a bit and my brain is never fully alert.  My hearing is partly to mostly turned off and I spend a lot of time mentally reconstructing what I think I heard you say.  If I am engaged in a known conversation I can usually either turn my hearing on or immediately reconstruct what I hear.  If you are saying something that I do not expect, I cannot either anticipate or reconstruct your meaning.  Sometimes I am unable to turn my hearing on at all and it is all noise.  Hearing aids only amplify the noise.  I have immense difficulty picking out one conversation out of several, so I am unresponsive at such things as family dinners.  Movies are a challenge.  I finally quite asking my wife “what did they say?” and just sit there.

I spend a lot of effort trying to appear to be responsive.  Effectively I am faking it while I am talking.  After a short time, I begin to tune out and the effort to continue becomes excessive.  Even if I hear, being essentially asleep, I cannot engage in a normal conversation.  I do not think of things to talk about so I rarely initiate a conversation unless there is something specific that needs to be discussed.  My audio and visual input circuits are restricted and my mental processing circuits are ineffective.

To this day I nap both regularly and episodically: thrice a day, at 9 AM, noon and 3 PM, and now and then before events such as club meetings and family dinners.  I’ll napped anywhere: at parks and in parking lots, in the back seats of cars, on picnic tables, in closets, and next to power transformers. I plan my day around meals and napping.  What’s with all this napping?  Nobody else that I know is obsessed with napping.

My life revolves around maintaining my schedule particularly nap time with auxiliary naps before events, minimizing stress, and regulating the length of time engaging with other people.  I was visiting a friend who had guests from Australia and my stay extended into my mid-day lunch and nap time.  We were in his workshop and I was asked to explain something.  I was nearly grayed out but attempted the explanation.  I was so stressed that I was shaking and my voice was trembling.  I finally had to excuse myself and go home for lunch and a nap.  I wish I could have changed those priorities, I tried, but over the span of my life naps became increasingly necessary.

I am aware of blank outs – microsleeps – as far back as the 1970’s.  My in-laws lived about 6 hours away and we visited them somewhat regularly.  several times, near the end of the trip, I observed that I had blanked out for a short time, short enough that I was still centered in the lane and at the same speed.  I had no idea what they were and fortunately they were short enough that I did not lose control of the car.  These would have been about 3 PM, the sleepiest time of the day.

More recently, I have had micro-sleeps while driving where I fail to see another vehicle.  They all happened in the afternoon, my worst time, and at a stop sign.  When they happened is important, but I did not figure the reason until after the table saw accident.  Knowing about blank outs, I realized that some near accidents were the basis for explaining all of the recent blank out events.  Our house is two story, and I am up and down the stairs often.  Occasionally I would miss the last step.  My foot would pass right over it.  The best explanation is that I was able to hold my brain awake until near the last step when it effectively said “I’m almost at the bottom, I no longer need to be so alert and wham I’m asleep.”  I blank out and lose muscular control, and the momentum of my leg and foot movement is uncontrolled.  My foot passes over the last step and I continue forward landing on floor to awaken suddenly.  I have no memory of the missed step.  I now watch my feet carefully as I descend.

That hypothesis of holding my brain awake until a “permissible” time fits the table saw accident perfectly.  My brain went to sleep just after my right hand had carried the finished piece to the left and about the time that I placed it on the finished stack.  It also fits the missed vehicle events as they were all in the afternoon and at a stop sign – a ‘permissible’ time for a micro-sleep.  These times are also dangerous times.

Gray outs go back a lot farther and some of that story has been told above.  About 2 years ago I did some repair work for a friend in the afternoon.  I replaced a circuit breaker and fixed a loose electrical outlet, done hot and both jobs needed careful attention.  I then talked with John, his wife and their caregiver for about 20 minutes.  That used up all of my alertness.  By the time I drove half a block away, I was beginning to grey out, but did not realize it.  I don’t think I drove through a red stop light but I went straight instead of turning right.  I got increasingly confused thinking I had never seen these houses before and that I was going too far.  Finally, I realized that I was totally lost and I nearly panicked.  It was one of my most awful experiences ever.  I don’t have words adequate to the emotion.  I have always known where I was and where I am going.  Being lost is terrifying.  After some time, I figured out that if I turned right twice and left once, I should get back on track.  I was more than half asleep and it was difficult to perform that decision, but I made it.  In retrospect, I should have stopped and taken a nap.

After my accident, I connected my black outs with gray outs and put them on a continuum from merely sleepy through almost completely asleep but retaining muscle control to a full micro-sleep.  With that knowledge I decided that I was no longer a safe driver.  The possibility of injuring another person is unacceptable.

I have experienced four gray outs in a vehicle since my table saw accident.  Two of the gray outs were on a city street that I had driven often for about 60 years, but I could not now recognize where I was and wrongly told my wife to not turn on this street.  The third one was a bit more dramatic.  My wife was driving and we were approaching the correct freeway exit.  I literally could not see the sign board and did not know where I was.  We ended up taking the next exit and returning to the correct one.  The fourth gray out was my poor judgment.  Because evenings after about 9 PM are my most alert times, I wrongly thought that I could drive my wife to the hospital for an emergency.  I exited the freeway correctly, but reading the sign board, I could only see the bottom line.  The top line was invisible.  What I read on the sign did not match where I was and once again, I was lost.  Fortunately, my wife was able to pull me back into ‘found’ again.

Circadian Rhythm Disorder

A coupla years ago, I was soaking in the bathtub and I noticed that in the span of a few seconds my mental state flipped and I sorta woke up and I was no longer quite so groggy.  This happened again and again, and I found that my most alert times were from about 9 to 12 PM despite being more tired.  I remembered that while working swing shift, I was more alert than working days.  So, I have gotten interested in the possibility of a circadian rhythm disorder.  A circadian rhythm disorder (CRD) is much more useful and informative than the previous diagnosis of ‘idiopathic excessive daytime sleepiness’ which is not much more than a description and an admission of ignorance.  EDS provides no connections between observations, no mechanism, and no response to the disorder.  CRD is observable and measurable by a 24-hour body core temperature test.

I have two sleep-wake cycles running simultaneously: a circadian rhythm established genetically and/or developmentally, and my learned conventional daily cycle established over many years from early childhood.  That learned cycle is now established as: wake up at 7-8 AM and go to sleep at 10-11PM.  But my brain and body want go to sleep at 12 noon to 1PM and to wake up at 8-9 PM.  My circadian rhythm normal sleep phase is approximately 10 hours advanced or 14 hours delayed.  Afternoons and early evening, my sleepiest times, are when I should be asleep.

There is an enormous difference in my mental state between 8 PM and 10 PM and the earlier part of the day.  I have used the noun ‘torture’ for my afternoons and early evenings.  I have no other word.  I feel a pressure in my head, I have to consciously focus my eyes and energize my ears, and that with difficulty.  I have recently been unable to work on my shop projects during the evenings and I have taken to reading more – and I can tell you that reading is difficult, I can read for a short period of time, about 5 – 10 minutes, and then I close both the book and my eyes, and take a break.  Don’t ask me what I just read because I cannot remember it.

For more years than I can remember, I take a walk at night about 9 PM.  I have noticed that my brain is clearer, my eyes easily take in the sights, and I am mentally relaxed.  I no longer need to exert a tremendous effort to be awake.  Instead of a beetling of my brow, I have a smile on my face.  But I have been awake since about 7:30 AM, my conventional/habitual sleep wake cycle exerts its effects and I am tired in a different way.  It is hard to describe the effects of two different sleep-wake cycle that are about 180 degrees out of phase have on me.  My hypothesis based upon these observations is that my natural cycle wakes up about 9 PM, but I go to sleep 2 to 3 hours later in my conventional/habitual sleep-wake cycle.  I wake up in the morning more tired than when I go to sleep at night.  My brain and body must be quite confused.

Sleepy people have trouble concentrating because their brain insists on being asleep. Sleepy people may have poor memories and other cognitive defects.  If they are sufficiently sleepy to be grayed out, their hearing and vision may be impaired because sleepiness turns these senses down or off.  Altogether, these factors imply that they may have difficulty or be unsafe while operating machinery and vehicles.  They may find social interactions to be difficult and tiring.

Afterwards and Afterwords

The medical workup subsequent to the injury to my hand indicated that I had not had a transient ischemic accident (stroke) and that I did not display memory loss or another dementia.  An overnight sleep study turned up a significant amount of obstructive sleep apnea and a second test has been scheduled to select a CPAP (Continuous Positive Airway Pressure) machine.  While this will not ameliorate the circadian rhythm disorder, it may reduce the added burden of sleepiness due to frequent partial awakenings due to apnea.  This Afterwords will become a continuing saga of my treatment.

My goal in writing this has been to set out a conceptual framework capable of incorporating all of the puzzling observations throughout my life.  It was catalyzed by a serious injury which yielded the concept of ‘blank outs’ or ‘micro-sleeps.’  Blank outs are more useful than micro-sleeps for they led to the concept of gray outs, puzzling events which have occurred over most of my life and had no explanation.  They also explained my increasing ‘idiopathic excessive daytime sleepiness’ and allowed me to remove ‘idiopathic’ from the descriptor: daytime sleepiness is the effect of my circadian rhythm disorder which has genetic and developmental causes.

It is my hope that publishing these notes on my experience will aid someone else in understanding theirs.  So long as I have an afterwards to the accident, I hope to add Afterwords to this essay.

12-2-21

T’other day I watched my brain going to sleep!  Literally!  My HMO checks my vision regularly and I was doing the Humphrey Visual Field Analyzer.  I was looking into white spherical bowl watching for brief flashes of light of varying intensity.  I noticed that my vision was gradually being obscured by a slowly moving greenish-blackish film of an abstract design.  It would vanish if I blinked or made a mental note of it, but immediately begin reforming.

I had no idea of what it was until I began my mid-day nap a coupla days later and realized that the film was a backlit version of my visual field when I close my eyes preparatory to going to sleep.  Not quite the same because of the background, and it has become apparent that my brain while going to sleep generates visual noise.  Quite probably this is related to the visual noise of dreaming for which the brain generates a story line.

The visual test was about 10:15 AM and my circadian rhythm would like to go to sleep at about noon, so this was late at ‘night’ for my brain.  I was watching my brain turn off my vision preparatory to or while going to sleep.  Making a mental note of it awakened my brain a bit for a short time.

Thanksgiving week I had two injury blank-outs.  Not serious, just adhesive bandage damage, but one of them could have been a broken finger.  What to make of these?  Are there blank-outs that are unknown?  So far most of them have been identified by awakening suddenly in pain.  However, in the ’70s I was aware of them while driving.  They were short enough that I remained in the lane at the same speed but somehow I was aware that I had slept for a brief time.  That I had two about one day apart suggests the possibility that the cause may involve more than just a circadian rhythm disorder as does the proximity in time of the serious accident micro-sleep and the four major gray-outs.  I know from my time cooking at San Jose State that grains, in particular wheat, affect my alertness.  I have reduced those as much as possible.  Other foods or combination of foods may have similar effects.  Just thinking at the keyboard.