Brian Armstrong

How I Learned to Live With DSPS

Since this post became so popular, I just setup a discussion forum where we can all discuss further and meet other folks living with or researching DSPS.

Click here to visit http://dsps.ribbot.com

The forum is brand new, but please sign up, introduce yourself and post any questions you might have.  Thanks!

I don’t do posts about my personal life that often, but I thought this one might help some people.

DSPS is a sleeping disorder (Delayed Sleep Phase Syndrome) and while I only found out it had a name years later, I started experiencing it around the time I entered high school (13 years old).

Here is a simple description of it:

The major feature of these disorders is a misalignment between the patient’s sleep pattern and the sleep pattern that is desired or regarded as the societal norm…. In most circadian rhythm sleep disorders, the underlying problem is that the patient cannot sleep when sleep is desired, needed or expected.

The symptoms are:

  • Regardless of how sleep deprived you are, you are unable to fall asleep until very late

  • Once you do fall asleep you can sleep for a normal amount of time, this differentiates it from other sleep disorders like insomnia

  • There is a relatively severe to absolute inability to advance the sleep phase to earlier hours

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I first started noticing this problem around the time I entered high school. I’d have to wake up fairly early (7am?) for school every day and of course it was difficult. This in itself was not remarkable. What was remarkable was that I would be unable to fall asleep before 2 or 3am any night, even after five days of little sleep.

So you can imagine Monday goes by on 4 hours of sleep. You aren’t feeling great. You should be tired the next night right? Nope…I would be exhausted all day, but as 9PM started to roll around I’d finally wake up for the day and start to get my best work done. Hours would just fly by like nothing. Even at 2 or 3 AM I was wide awake and could have easily kept going. But I knew I had to wake up in 4 hours and would force myself to go to bed.

The second day goes by on 4 hours of sleep. You feel even worse. Surely, tonight your body should be wanting to catch up on sleep right? Nope…same problem (you’re exhausted all day but start to wake up at night). Even when I would “go to bed” at 10 or 11PM to try and catch up, I would literally lie there awake in bed for hours and hours (until about 3AM) bored out of my mind.

The entire week goes by like this, each day getting worse and worse (in the morning and throughout the day) as you are in permanent jet lag, yet you can’t fall asleep any earlier.

The best way I can describe it is if you’ve ever had to wake up in the middle of the night and do something in a deep sleep. It’s like if you suddenly had to start getting up for work every day at 1AM.

I was on an entirely different schedule than the rest of the world, and couldn’t adjust no matter how hard I tried.

The Worst Part About It: People’s Perceptions

By far the worst part of DSPS is the societal stigma around it. Obviously, most people (even doctors) have never heard of it. It only affects 0.17% of the population. And most people when you tell them about it think it’s bullshit or that you’re lazy/making excuses.

“It’s just a habit you have to get into.”

“I find exercise/light reading helps me.”

“You just have to give up caffeine.”

Yes, I tried all these things and all of them help me fall asleep faster: at 3AM. That’s just what my body considers it’s normal bed time.

It can be frustrating at times because people make suggestions about it that come across as patronizing. Sometimes you just want to scream “duh! this has been messing with my life every day for the last 10 years, don’t you think I would have tried not drinking caffeine and saved myself the trouble 10 years ago!!!”

But obviously, you can’t blame other people. If I was in their shoes I probably wouldn’t believe it either. People invent all sorts of limitations which are entirely mental.

After reading every piece of literature I could find and trying dozens of treatments to fix it over the last 10 years, I’m fairly convinced that it is a genetic predisposition for me though and not psychosomatic (possibly still curable but I haven’t found anything reliable yet). (Edit: check out the comments below where people mention various remedies they’ve had success with.  Taking melatonin has worked quite well for me, and I’d recommend it.)

Perhaps the worst offenders in the “people’s perceptions” category for me was my parents. Throughout high school (and partially even to this day, I’m not really sure) they did not believe it or fully understand it.

Obviously, after a school week of sleeping four hours per night (and falling asleep again Friday night at 3AM) my body was DESPERATE to sleep a full 8-12 hours on the weekend till noon or later. My parents weren’t happy about this and believed it was a sign of laziness. They would play all sorts of games to get me up on time (I was not amused - again, imagine being woken up at the equivalent of 1AM after a week of sleep deprivation - I believe the North Koreans use similar tactics in labor camps! :).

To their credit, I know they only wanted the best for me, and they didn’t know. DSPS wasn’t even formally recognized as a sleeping disorder until 1981, a few years before I was born, so they had no way of knowing.

Still, it was tough.

A World Designed Without You In Mind

For a long time, I felt like one of those 7 foot basketball players where doorways and airplanes seats never fit you. The world was just not designed for me.

Teachers in high school would routinely harass me for not being alert. I remember actually having hallucinations (the medical term for this is a microsleep) while sitting in class fairly often - a common symptom of extreme sleep deprivation. I didn’t know this wasn’t normal. I figured everyone just “spaces out” sometimes. It’s a really bizarre feeling to have your eyes open while dreaming. You are frozen, almost paralyzed, for 10 seconds or so in a trance until you jerk back suddenly to reality.

College was better, I was able to schedule many of my classes in the afternoon. However, not all of them. Early morning exams were difficult. There is well documented evidence about the negative effects of sleep deprivation, namely:

  • Mental acuity decreases significantly

  • Healing - a 2007 study showed a 20% decrease in white blood cell count in sleep deprived rats as compared to a control group

  • A variety of accidents including the Exxon Valdez spill and Chernobyl nuclear reactor meltdown have been linked to sleep deprived workers

I remember one time in college I went to the gym (it was a small weight room and nobody else was there). I was laying on the incline bench, and put down a set of weights. A moment later I woke up and looked at my watch. An hour and a half had gone by. I had fallen asleep in the middle of the gym without even knowing it.

There were other incidents as well. In the mornings driving to school I would sometimes fall asleep at stop lights. When it turned green people would honk behind me and I’d wake back up. Obviously not the safest way to drive.

Again, all I can compare it to is imagine having to wake up at 1am to take an exam. You probably wouldn’t do quite as well, right?

This is probably what bothers me about it the most: I feel like I was cheated out of a lot of learning especially in high school (and partially in college). I mean, everything considered I still did pretty well, but if that’s how I did being under under extreme sleep deprivation EVERY DAY, just imagine how much I could have accomplished fully rested! Imagine the energy, connections, opportunities, clubs, etc. Ah well…

Discovering I Wasn’t The Only One

Years later (it was toward the end of college) I had become somewhat of a student on sleep disorders during my free time. I had read extensively on it and tried a number of experiments to try and correct it (including polyphasic sleeping, expensive light therapy devices which worked but didn’t have a long term effect, chronotherapy, and others).

One day I came across this wikipedia article on DSPS and I was absolutely STUNNED. It felt like it was describing me perfectly and as I read it, I thought “my God, someone else actually knows about this and has it…and there is a name for it”. It sounds silly but I think the most important thing I realized was that I WASN’T CRAZY.

My entire life up to that point I had always wondered if people were right, maybe I was just lazy or kidding myself. Finding this article at least brought some validity to my own experiences, and let me know there were people out their actively researching it.

Thank God for the internet. It allowed me to self diagnose what would have easily gone unrecognized by a dozen doctors due to it’s obscurity (DSPS is frequently mis-diagnosed as insomnia or depression, often involving the prescription of psychoactive drugs - thankfully that didn’t happen).

Despite my excitement over the article, I was somewhat disheartened to learn that even with the best treatments available today (light therapy, melatonin, etc) it is still largely incurable with 90% of patients seeing a relapse within 1 year. At least I knew I wasn’t alone.

Update 1: A new theory I have on this is that light from staring at a computer monitor can worsen this or even be the main cause of DSPS.  It is essentially light therapy, but at the wrong time.  Anecdotally, lots of computer scientists I know seem to have delayed sleep schedules, but I don’t have any hard evidence of this so it remains just a theory.  If you have any experience with it let me know in the comments.

Update 2: I take melatonin now to fall asleep earlier.  A 3mg dose is effective and safe from what I’ve read on it.  This has been by far the best solution I’ve found.

Adapting To Life

This shows up in my job where I prefer to work later and come in later to be more productive.  Melatonin has made this easier but I still prefer not to work before 10AM.

I also rarely schedule early flights and don’t attend meetings before noon if it can at all be avoided. I absolutely despise alarm clocks and consider it a matter of personal pride that I don’t own one and only ever use one (my cell phone) a few times a year for special events.

The occasional one day of sleep deprivation is manageable for special events where I need to get up early. Its the multiple days in a row that are really bad and cause the microsleeps (hallucinations), so those are luckily a thing of the past.

So that’s it. I’ll just close by saying that this post is not a “poor me” cry for help. On the contrary, if this is the worst genetic disorder life has to throw at me I’m home free - I got an easy one and it barely affects me at all today. Also, for some people it apparently fades out later in life. Older people naturally sleep less, so it may (or may not) go away on it’s own.

If you have any sort of similar health problem read the next paragraph:

Lots of people take a negative attitude toward these things and say “great, 0.17% of the population gets this and of course I’M the one to get it!” But that’s bullshit, there are tons of diseases/disorders you probably have a 0.17% of getting, and adding them all up means you have a pretty good chance of having SOMETHING if not lots of them. DSPS is much better than a lot of problems I can think of having, and I feel EXTREMELY lucky to have been born with all the other advantages I have in life. I’ve got zero room for whining on something like this.

But I thought I’d post it out there for a few reasons:

  1. A lot of entrepreneurs I’ve met seem to have this, and don’t know they have it. They might feel like I did (like something is wrong with them) and this will help them to understand it. And…

  2. So that if you ever invite me to a morning meeting, you’ll understand when I don’t show up… :)

Until next time, keep breaking free! Brian Armstrong

Since this post became so popular, I just setup a discussion forum where we can all discuss further and meet other folks living with or researching DSPS.

Click here to visit http://dsps.ribbot.com

The forum is brand new, but please sign up, introduce yourself and post any questions you might have.  Thanks!

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