How I Learned To Live With DSPS

In: Lifestyle|Psychology By: Brian Armstrong

13 Jun 2009

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

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:

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…
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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Tags: Psychology

255 Responses

www.ManuelZeh.de

June 13th, 2009 at 4:46 pm

Hey Brian, that post you wrote about the Light Therapy (when was it, three years ago?) saved my life. I use the blue light every day now. I remember I sent you the wiki site about DSPS and I have it too… so that’s one reason why I chose to be a musician. I rarely start working before 6pm.

I still like to get up at 9 am though, cause I’m more productive that way… and that would be impossible without the blue light. In fact if I stop using it for a few days, the DSPS fully kicks in again and I can’t sleep before 3 or 4 am.

I had the same problem in school, but what’s worse, I used to get terrible head aches and I had NO IDEA that they were related to the DSPS. Only when I started working as a musician and I didn’t have to set alarms anymore, the headaches stopped and I saw the connection. Luckily it’s been years since I found out about DSPS, and my prof at the music academy where I graduated was very understanding.

Great article, it’s good to spread the word about this. I once read somewhere that some 10% of the population have at least a mild form of DSPS. And whether that’s true or not, waking up between 6 and 7 am doesn’t seem to feel natural to almost anybody, judging from the long faces you see on the subway in the early morning hours. Haha.

Best,

-Manuel

Brian Armstrong

June 13th, 2009 at 11:59 pm

Oh cool, that interesting the blue light works well for you. I got good results with it initially, but there were a few things which I had trouble with, namely:
1. to get started is hard, because you have to wake up early to shine it at the right time of day (or when you started out did you just do it whenever you woke up?)

2. I would usually go out at least one night per week, have a few drinks and then sleep in late the next day (like on a weekend) and this would break the cycle again.

I’m curious to hear other people’s results with it though, maybe I should try it again.

www.ManuelZeh.de

June 14th, 2009 at 12:09 am

1. to get started is hard, because you have to wake up early to shine it at the right time of day (or when you started out did you just do it whenever you woke up?)

I used to skip a night, i.e. when my biorhythm was set to going to bed at 4 am and waking up at 1 pm, I’d just stay up 30 hours until the next day at 7pm, then sleep 12 hours and then use the blue light. Setting an early alarm works too, but it’s more painful.

2. I would usually go out at least one night per week, have a few drinks and then sleep in late the next day (like on a weekend) and this would break the cycle again.

Yeah, I hardly go clubbing anymore and one reason is that it really throws my DSPS for a loop.

Brian Armstrong

June 16th, 2009 at 11:37 pm

Ahh, good to know! Yep I would try to shine it early in the morning as well but it’s very difficult to start.

karen

September 13th, 2009 at 6:06 am

Sounds like your DSPS is more serious than what Dr. Richard Ferber would recommend. But I immediately thought of this sleep expert whom most new-moms turn to regarding their babies.

The book, Solve Your Child’s Sleep Problems also has a chapter about teens whose circadian rhythms are set to have them fall asleep at 3 or 4 am. He generally has mom’s put babies to bed 15 minutes earlier each night until set to a better time, but with teens he shifts their schedule LATER over a few weeks until at a normal time — meaning that teens must miss many hours of school in the process.

You may be beyond experimentations, but none the less curious to read Dr. Ferber’s book.

Barb D.

June 13th, 2009 at 5:19 pm

Hi Brian,

Just wondering–how did your recent move affect your sleep? Any changes? When do you go to bed now?
Great of you to share this with us–I’ve never heard of it, and I know someone with these symptoms.

Thanks,
Barb

Brian Armstrong

June 14th, 2009 at 12:02 am

Hi Barb, no big changes with the move to Argentina. Jet lag works about the same for me as it does with other people. Usually after a few days I adjust to the new time zone (and start falling asleep around 3am as usual).

Hope it helps your friend!
Brian

kiwi_girl

September 3rd, 2009 at 10:04 am

yes i found the exact same thing with the jet lag. i am from new zealand and currently working as an au pair in spain and when i first arrived in london it just took a few days and i was back to falling asleep at 2 or 3am again every night.

CamKC

June 13th, 2009 at 9:59 pm

This problem has been formally acknowledged, and schools and colleges in Scandinavia are making their start-times later for adolescents.

In some areas of the US this is also noted, and the fact that it particularly affects adolescents makes school and college start-times an important issue.

In the UK, where most schools are so very concerned about their ranking vis-a-vis other schools in the area, and where rankings are publicly displayed, you would expect them too to seize on this idea as it would be expected to raise their pupils’ scores without doing anything except changing the start time.

But if employers expect the start-time to remain as it always has been, then pupils who have problems with early starts will be driven into occupations where start-time is not such a big deal.

In addition to being an entrepreneur that you have already mentioned, I saw an article saying that computer programmers loved to come in late and often stay very late, and at places like Google and Microsoft they make arrangements to allow this to happen.

But its seen very much as a “programmer geeky thing” and they haven’t seen the connection with the circadian rhythms of adolescents yet.

Brian Armstrong

June 14th, 2009 at 12:04 am

Hi KC,

Good points, yep my impression is that it will continue to get more attention both in schools and jobs. It really is a “free” productivity boost for forward thinking employers and schools.

Thanks!
Brian

Brian Armstrong

June 14th, 2009 at 12:06 am

I forgot to mention also, there is some evidence that the computer screen is what throws off the sleep cycle. It would make sense given the light therapy remedies, etc. I haven’t fully tested this theory, but I’m currently experimenting with a program that is supposed to help with this (it adjusts your monitor’s brightness and color composition based on the time of day).

http://www.stereopsis.com/flux/

Been using it for about a week, no changes I can notice yet, but it’s a good idea.

www.ManuelZeh.de

June 14th, 2009 at 6:43 pm

That totally makes sense to me. I know lots of people who work on the computer a lot and suffer from insomnia. This tool sounds amazing, I will download it immediately.

By the way, I’m experimenting with a gradual way of resetting my body clock. Say I was out late Saturday night, I use the blue light at noon on Sunday and it helps to go to bed a bit earlier every day (maybe 30 to 60 min). I think you only need to overdose on the blue light and it shortens your day to less than 24 hours.

-Manuel.

www.ManuelZeh.de

June 14th, 2009 at 6:50 pm

A few more thoughts about this… I think you’re not noting any effect because your DSPS is genetic. Whereas somebody who doesn’t have genetic DSPS can have his biorhythm offset by the computer screen, so it would help those people more.

A few months ago I spent a few weeks working on the computer practically 24/7 and it made my DSPS worse (my days started to be longer than 24 hours and after a while I couldn’t fall asleep before 8 am).

-Manuel

Brian Armstrong

June 16th, 2009 at 11:39 pm

Very interesting…yep I agree that the computer probably makes it worse. Let me know how the Flux program works for you.

www.ManuelZeh.de

June 25th, 2009 at 1:23 am

I’ve tested this gradual way of resetting the body clock twice. Once it worked cause I did it very slowly, maybe half an hour back a day, with strong doses of blue light in the morning. Last night I tried to set my clock back by 90 minutes at once and go to bed at 11.30 pm. My body thought it was an afternoon nap, woke me up after 20 minutes and I was wide awake till 5 am. :/

Brian Armstrong

June 25th, 2009 at 2:39 am

That’s a tough one :)

Paul Buenaflor

June 15th, 2009 at 10:10 pm

Brian,

I found this post interesting because I experienced something like this before, but in a milder form. I don’t want to diminish the seriousness of the problem, but – at the risk of sounding patronizing like the people you described – let me offer you some quack thoughts:

1) Is it possible that certain personality types require a certain “minimum daily allowance” of quiet, alone time in order to stay healthy? Some people thrive on being around people and being physically busy (for better or worse), so they can go right to bed after doing stuff.

Other people need – for example – 3 hours minimum “quiet, alone-time” (call it “QAT”) to let the brain crank away. Since their brain has been engaged in the world all day, the only time that the brain has time to roam free is after 9PM. If they got that 3 hours of QAT from, say, 3PM to 6PM, they would feel more ready to sleep at the “normal” hour. Of course, this is impractical for most people, but you get my drift. And in your case, sounds like you needed 6 hours daily allowance of QAT – from 9PM to 3AM!

As you know, some successful people spend do get lots of QAT. I think I read that Warren Buffett (I’m not 100% sure) spends 2 hours every morning alone just “reflecting” on the world.

2) I think the “disorder,” in at least some cases, must be socially-driven – caused by an imbalance between “extrovert” time and “introvert” time. Because if the disorder were linked to an absolute time, you could cure it just by moving time zones. For example, if your “natural” bedtime were 3am CST, you could just move to a place where 3am CST is 10pm. That would make you an early bird.

To paraphrase another great Buffett (Jimmy Buffett): Pour me another margarita. It’s only half past 12, but I don’t care because it’s 5 o’clock somewhere…

Regards,
Paul B

Brian Armstrong

June 16th, 2009 at 11:44 pm

Hi Paul, good thoughts and I certainly don’t mind. The QAT introvert/extrovert theory is a definite possibility.

Also the reason why moving to a different time zone doesn’t solve it is because our biological clocks are affected by light. So there is a natural reset there. But you’re right there are social factors as well.

For me I don’t think it’s a huge effect though…for example last night I was out salsa dancing with a large group of people until 5am and only started getting tired around the 4am as usual. But it’s the same if I’m in my room working alone.

www.ManuelZeh.de

June 17th, 2009 at 3:22 am

I agree. On my travels, at times I was meditating in Asia 90% of the time and other times I was partying in South America 90% of the time, and it didn’t affect the DSPS.

Paul Buenaflor

June 17th, 2009 at 8:19 pm

This is a pretty dramatic counter-example. Amazing that such polar opposite lifestyles had no effect on the DSPS. And funny how Asia led you to meditate, while South America led you to party.

Chuck Cohn

June 15th, 2009 at 10:39 pm

DSPS sounds like it could really sneak up on you. One day it takes you a little longer to fall asleep than normal, next thing you know you’ve quit your job, sold most of your belongs, and are living in South America writing a blog at 3 AM! It did take me a while to fall asleep last night….

Just kidding. Interesting post. I think ADD/ADHD is probably another big “disorder” that leads to people starting their own business.

Brian Armstrong

June 16th, 2009 at 11:45 pm

Haha…agreed! Fine line between brilliance and insanity :)

Andrew Michel

June 24th, 2009 at 5:07 am

Wow, I believe I have this. I never sleep till at least 3am. I have tried many things but still can’t sleep until 3am. Usually during schhol I am pretty much passed out, but no matter what. After about 8pm I am wide awake.

I am not certain I have this though. Some nights I can fall asleep earlier. Example. no sleep and I can fall asleep at about 8. But I usually fall asleep before dark. I only get my wide awake feeling after it turns dark.

Oh well. I’m still young. Maybe it will die off like you said it might.

Brian Armstrong

June 25th, 2009 at 12:26 am

If sleep deprived it’s possible to fall asleep much earlier (say around 5-8pm) because this is the equivalent of an afternoon nap for most people in terms of where your circadian rhythm is, but typically not at say 10pm. If that makes sense.

delayed2sleep

July 10th, 2009 at 9:34 am

What a wonderful post about DSPS! Well-written – and so familiar. Especially the revelation, the moment one learns that it exists, it has a name. Mine started long before yours – both earlier in my life, as a preschooler, and much earlier in the 20th century.

You’ve got some interesting comments, too. It’s hard to explain and hard (impossible) for most people to understand. I have one friend who I think really does understand because he’s such an extreme lark! He really has to get to bed at about 9 p.m. Later than that he can fall asleep in a theatre or in his mother-in-law’s living room. Since he knows that he can’t fix his sleep schedule, he believes me about mine.

BTW, one should NOT get up very early to use bright (white or blue) light! If you use it too early it can have the opposite of the desired effect. Up to an hour before usual wake should be OK.

I use 10000 lux white light when I wake up (usually by 1 p.m.) and one-half mg melatonin an hour and a half before bed. I also use amber blue-blocking goggles in the evening – when I remember. I’d used mel and light box for 5 years. After I retired, I tried 8 weeks without either. No go. I was sleeping mostly 3-5 or 10-14 hours, at any time of day. Chaos. Looks like I’m on melatonin for life. As you point out, there are worse abnormalities.

www.ManuelZeh.de

July 11th, 2009 at 12:36 am

QUOTE:
BTW, one should NOT get up very early to use bright (white or blue) light! If you use it too early it can have the opposite of the desired effect. Up to an hour before usual wake should be OK.

What side effect can the blue light have? I’ve been using it for about a year and so far it works great, most of the time. I can, if I so desire, sleep from 10 pm til 7 am instead of the usual 4 am to 1 pm. I even wake up at 7 without an alarm clock and I’m yawning by 10 pm.

QUOTE:
No go. I was sleeping mostly 3-5 or 10-14 hours, at any time of day. Chaos.

That’s interesting, I never had these symptoms (but I’m only 28 – maybe DSPS gets worse over time if its not treated?). My sleep is normal excepr for the fact that the schedule is set off, I always sleep about 7 to 9 hours.

www.ManuelZeh.de

July 26th, 2009 at 9:46 pm

QUOTE: I also use amber blue-blocking goggles in the evening – when I remember.

That’s interesting and it’s something I’d like to try. Are these special goggles or just any blue goggles? Where can I get those?

Thanks,

-Manuel

delayed2sleep

July 27th, 2009 at 1:10 pm

Not blue goggles. Blue-blocking goggles. As you know, blue light upon awakening helps advance sleep. Blue light in late evening delays sleep. Indoor lighting and, not least, computer screens, are light with a lot of blue in it. I got my amber goggles from a dental supply company (dentists and dental assistants use a very intense blue light to harden some fillings and it’s not good for their eyes).

My goggles are identical to the ones pictured on this home page: https://www.lowbluelights.com/index.asp
Strangely it’s not in their product assortment, but there are very similar ones. (They call them glasses. When they’re wrap-around and snug, I call them goggles.)

You can’t use them while exercizing – they get steamy. And you can’t use them while doing delicate work with colors — on screen, fabrics, artwork. Otherwise they’re fine.

The point is to let your pineal gland start secreting melatonin as early in the evening as it wants to.

Think back to before electric light. Blue sky in the morning. Orange sunset, then orange light from candles / oil lamps / fireplace.

www.ManuelZeh.de

July 27th, 2009 at 3:19 pm

Thanks for clarifying, I’ll try those. How many hours before bed time do you use those?

On another note, I looked into melatonin as a supplement and wikipedia says it’s illegal in Germany. So I looked up the German wikipedia article about melatonin and it says:

“The effect of diminishing the gonadals (sexual glands) is important, especially for the intake of melatonin.”

Is this something we should be worried about? It also says in the article that melatonin is safe in the short term (less than 3 months) but no studies have been made about taking it for longer than that.

Best,

-Manny

delayed2sleep

July 11th, 2009 at 2:00 pm

@Brian: You told about a program above which “adjusts your monitor’s brightness and color composition based on the time of day.” Now you’ve used it for a month or more? Tell us more. Satisfied?

@Manuel: No problem with blue light unless you have a degenerative disease of the retina. Blue or white gives the same effect; it’s the blue in the white which affects the circadian system – blue at about 480nm. (In contrast the human visual system is most excitable at green ~560nm if I recall correctly.)

My warning was rather about the timing, whether you’re using white or blue light. There’s a not-too-easy concept, the Phase Response Curve (see Wikipedia and/or my blog) which shows the effect of (bright) light on the circadian system at varying times of day. And that means time of YOUR day, based on habitual wake time. Up to 2 hr before wake (varies wildly individually, can be from 1 to 6 1/2 hr) light will advance the system. Before the magic point of the lowest core body temperature, however, light has the opposite effect, which should be avoided. Thus someone who wakes naturally at noon, should not force her/himself up at 7 a.m. to use bright light. It may backfire.

I don’t know if DSPS gets worse with age. After struggling the losing battle with it for a few decades, without even knowing what it is, it may be harder to tame? But all my life I’ve occasionally slept for 14 hrs. Drove my dad nuts. “It’s like you’re putting sleep in the bank to draw on later,” he’d say.

www.ManuelZeh.de

July 11th, 2009 at 3:34 pm

Thanks for the clarifications, I appreciate it. I will keep that in mind and watch for those symptoms in the future. Yeah my dad was complaining about it a lot too. “Do you always have to turn the night into the day?” Or my personal favorite: “You shouldn’t go to sleep so late, because the house you sleep before midnight count twice as much as the hours after midnight”. Haha. I’ll check out your blog too, thanks for that!

Best,

-Manuel.

Brian Armstrong

July 14th, 2009 at 10:19 pm

Hey there, no noticeable changes from Flux, the program to adjust my monitor, but I’m still using it and have grown to like it…it’s just easier on the eyes after nighttime. Who knows…maybe it will have a long term effect, these things are difficult to measure, but nothing drastic so far.

www.ManuelZeh.de

July 13th, 2009 at 3:05 am

Is it possible to grow desensitized / immune to the blue light? I’ve been using it for about a year and as I said above, it worked great (in fact I’d even be able to wake up at 7 am without an alarm clock and fall asleep at 10 pm). In recent weeks, I’ve been having trouble falling asleep even at midnight. Anybody experience anything like that with the light therapy?

Brian Armstrong

July 14th, 2009 at 10:16 pm

Hey Manny, if I had to guess I’d say no, just because “regular” people don’t seem to become immune to their wake up schedules from natural sunlight. But really I’m just guessing, it’s an interesting question.

www.ManuelZeh.de

August 18th, 2009 at 8:54 pm

I think I figured this one out. I think the blue light lost its effect on me because I have the travel version and the rechargable batteries are starting to get weak. I always leave it plugged in now while I use it and I think that solved the problem.

Brian Armstrong

August 18th, 2009 at 9:22 pm

Interesting. Btw, I recently did what you mentioned where I stayed up all night and next day and went to bed a more normal time. I’ve been trying to maintain it, it’s getting a little more difficult but so far so good, been waking up at 8:30 last week and a half. Let me know if anything else develops…we can share tips.
Brian

www.ManuelZeh.de

August 18th, 2009 at 9:27 pm

Yeah that works for me too. Now I have gigs almost every night of the week so I rarely get to bed before midnight, but when I wasn’t performing so much, I managed to wake up at 7.30 every morning, like clock work and without an alarm. It’s a great feeling, when I have my affirmations, breakfast, emails, workout, shower and meditation done by 9.30 am, the day is just off to a hell of a productive start.

College Town Menus (CTM)

July 15th, 2009 at 2:43 pm

Haha not going to lie, this was one of your biggest posts. I skimmed through most of it, and I can only imagine how hard it would be having this condition. I’m tired at work on a daily basis even with 7ish hours of sleep. I think you manage it well though and your hard work pays off; that is, when you’re awake to work on it, haha.
The trick for me to get up in the morning is to put my cell phone on vibrate under my pillow or on loudest ringer in another room. Works every time.

mattyboy

July 17th, 2009 at 10:34 pm

Well you’ve certainly picked the right country to move to – Argentina does everything late! None of my Argentine friends even knew anyone who would go to bed before 1am…

-Matt

Brian Armstrong

July 20th, 2009 at 3:54 am

Haha, very true!

David Adams

August 29th, 2009 at 2:56 am

I’m glad to have read your posting. I’ve been dealing with DSPS for 25 years or so, with a similar story to yours. I was a zombie in high school, but eventually just started skipping school every 3-4 days to sleep. Despite missing all the classes, my GPA skyrocketed. In college, once I realized that I could schedule all my classes for 1pm or later, I got straight As. When I had an early exam, I would just stay up all night cramming, take a 45 minute nap right before the exam, and ace it. Thankfully, I became an entrepreneur, and let me heartily concur with your appraisal of the situation. People keep buying my companies, though, then expecting me to come work in their offices. So I start new companies.

It was only one week ago that I found out that DSPS was a recognized disorder. I thought I was all alone in the world (even though I now realize that both my mother and sister have it also). I just got used to thinking that I was morally deficient for not being able to get up in the morning. The world makes you feel that way. Luckily, I managed to make my way in the world and readjust my life around it, but now I’m feeling quite giddy that I’m learning about other people who have it, and feeling some kinship and support. The fact that I now know there’s no “cure” is a small price to pay to be able to let go of the guilt.

Brian Armstrong

August 29th, 2009 at 3:14 pm

Wow David, great to hear you story. I’m curious what companies you are working on or have sold. Would you mind sharing a bit? Always good to meet other entrepreneurs.

I wonder if more people with DSPS end up in entrepreneurship than normal (I suspect they do).
Brian

striker

September 12th, 2009 at 3:48 am

Take a couple of bananas & cut into small pieces & fry them in Ghee (or butter if you cant find Ghee). Add a little cinnamon powder.

Next boil some Milk & cool it a bit and then add the fried bananas.
Eat this about 30 mins before bedtime
Take this for a few nights & see if this helps with your sleep patterns.

striker

September 12th, 2009 at 3:52 am

http://allfall.blogspot.com/2005/08/banana-and-milk-or-melatonin-as.html

btw, this is a standard sleep remedy used in India.

karen

September 13th, 2009 at 6:12 am

Sounds like your DSPS is more serious than what Dr. Richard Ferber would recommend. But I immediately thought of this sleep expert whom most new-moms turn to regarding their babies.

The book, Solve Your Child’s Sleep Problems also has a chapter about teens whose circadian rhythms are set to have them fall asleep at 1 or 3 am. He generally has mom’s put babies to bed 15 minutes earlier each night until set to a better time, but with teens he shifts their schedule LATER over a few weeks until at a normal time — meaning that teens must miss many hours of school in the process.

You may be beyond experimentations, but none the less curious to read Dr. Ferber’s book, or his teen (3am) section at least.

www.ManuelZeh.de

September 13th, 2009 at 8:27 am

Shifting the schedule later little by little totally works, I’ve done it often. The problem is, if ever something happens to make you stay up late even only once, you have to start the entire process all over again.

Brian Armstrong

September 13th, 2009 at 5:01 pm

Interesting, thanks Karen!

Luke

October 13th, 2009 at 2:15 am

When I read your post, I had to double take, almost had to check my wallet to make completely sure my name isn’t Brian Armstrong!

I too recently stumbled across the Wikipedia article on DSPS, and my jaw dropped as I self-diagnosed the problem i’ve been suffering with for the past several years (I’m now 19).

I pretty much failed school, and lost a job thanks to this illness, however the interesting thing to note is that in the evening-thru-late-night peak spanning over several years, I practically taught myself to be an IT engineer and web designer/programmer.

I now run my own IT support business, with a steady stream of entrepeneurial ideas(/delusions as they rarely materialise) running through my mind! I’m also a part time manager of a music studio, gymnastics coach, and the list goes on..
So strangely there does seem to be a link there..

The one main thing I’m overjoyed about, is that I can put a name to what has been considered by family, friends, my old boss etc. as lazyness, or a teenage “phase”, I just can’t stand the social stigma attached.

Good to know there are other people who suffer from the same condition, hope to keep in touch :)

P.S. It’s 3:15 am as I write this.. hah

Luke

Brian Armstrong

October 13th, 2009 at 1:56 pm

Hey Luke, glad you found the site! :) I agree, it was a great weight lifted to finally found out others have it.

Btw, my latest theory is that it’s the computer monitor that is largely responsible for throwing things off. It works just like a light therapy device (except at the wrong times, late at night).

I started using http://stereopsis.com/flux/ to auto-dim the monitor late at night. No dramatic effect. But when I started dimming the monitor even further (to about 50% power) or avoiding the computer entirely at night I started to notice an effect, my sleep cycle stopped drifting later and later. I’m now able to wake up consistently at the same time and fall asleep earlier. It helped. Check it out!

There is a definite pattern where most people who have DSPS are heavy computer users late at night. Whether that is because they are awake and need something to do, or because it’s the cause, I’m not sure. But worth investigating. If you try it and it helps let me know!

www.ManuelZeh.de

October 14th, 2009 at 1:43 am

That’s a great insight. The flux didn’t do it for me either, in fact I don’t think it had any effect at all. Lately my rhythm has been way off, sometimes I’d fall asleep at 8 am, wake up at 2pm, sleep from 11pm to 4am, all kinds of nonsense. And I think the reason coudl very well be that I’ve been working on the computer a lot lately, and it may have offset the effect off the bluelight (or more than just offset it).

I’ll test this for a couple of weeks and let you know how it goes.

Brian Armstrong

October 14th, 2009 at 3:25 pm

Interesting, thanks Manny. Curious to hear your results.

delayed2sleep

October 14th, 2009 at 1:34 am

Hello again,

The monitor is, or seems, very blue and I’m sure it makes things worse. But I don’t believe it can “cause” DSPS. I’ve had DSPS since I was little, computers hadn’t been invented and we didn’t have a TV. Just sayin’.

Different as we all are, we do seem to have one thing in common: the great relief at learning that it has a name and isn’t just a personal lack of will-power. Life-changing, really.

Brian Armstrong

October 14th, 2009 at 3:23 pm

Valid point, I think you’re right it’s not the sole cause or anything like that. Possibly worsening the problem though. I’ve noticed an improvement since drastically dimming or avoiding computer usage, but it’s difficult to test these things when there are so many variables (in geek speak, it’s not a controlled experiment). It’s great though that we have so many people finding this article and reporting back. Since it’s so rare it’s great to share info between other people who have it!

Evan L.

October 27th, 2009 at 9:37 am

I’m rather self-diagnosed as far as this, myself. I’m a 15 year old teenager, a sophomore in high school, and my life is currently down the crapper (if you’ll pardon the expression). I am 100% unable to fall asleep before 7 in the morning. I’ve tried literally everything that people suggest for me to do (sleeping pills, exercise, etc) and eventually, it just got labeled from everyone (yes, even most of my friends) as being lazy. My parents see me as lazy, and it being my fault, the school does, and so do some of my friends. Even my god danged doctor thinks I’m just lazy. I can’t keep up with school any more, and I’ve reached the point where I’m not even getting by. I’ve tried melatonin, and that doesn’t help. I’ve also tried chronotherapy and I relapse in a week-2 weeks, and it takes me nearly a month to get to the right time anyway.

I don’t even know what to do any more, and at this point, I’m looking to be kicked out of my internet school (since I failed public school). I’ve run out of available options, and I need something that’ll work. Fast.

Got any suggestions for me?

Brian Armstrong

October 27th, 2009 at 5:49 pm

Hey Evan, sounds tough for sure. My only suggestion is to remind yourself that you have the same number of hours in a day as everyone else. Just because you’re sleeping odd hours doesn’t mean you can’t be productive. In some ways you’ll be more productive actually because you can focus without interruption while everyone else is sleeping. This is your chance to be self-taught whenever possible. If you want anything badly enough you can find a way to do it. Stay positive and good luck!

delayed2sleep

October 27th, 2009 at 1:34 pm

First the more long-range stuff, which you didn’t ask about. About 0.15 % of adults, equally many women as men, have DSPS (or DSPD, as some are calling it now). About 7 % of adolescents do, most of them boys. Obviously the majority of teens with DSPS outgrow it by their early 20s. I know that is no help just now.

If you are in the USA, there is a brand new subspecialty, Sleep Medicine. Doctors who’ve completed that know at least something about circadian rhythm disorders (CRD). That would be mainly neurologists, pediatricians and psychiatrists. Accredited sleep centers are now required to have such a specialist on staff.

The first sections of this PDF: http://www.aasmnet.org/Resources/PracticeParameters/Review_CircadianRhythm.pdf and especially Part 2 of that review (which I can’t find at the moment) should help convince parents & doctors that the disorder is real. As someone said, “DSPS is a condition, not a habit!” Obviously you need at least one adult willing to believe and help you. Online stuff including Wikipedia should help with that. And welcome to my blog, which is all about CRD. Good luck!

Diane

November 5th, 2009 at 1:23 am

Thank you, thank you, thank you, as we used to say in the deep south. Now I have a name for this condition. I retired at age 52 because I couldn’t keep up anymore. (I was luckily able to retire) After a couple of years I started thinking – why was I not able to keep up? Early fifties is certainly not an old age! Developed depression about 10 yrs prior to retirement. Learned that I had sleep apnea about three years ago but the cpap does not help me. When I am on my game, I am ON MY GAME. But when I’m not, boy am I busted, unfocused, “airhead.” Just knowing DSPS is a real condition and that I’m not deficient in some way is certainly an encouragement. Now I need to think through and work through developing a plan – do I attempt to “reschedule” myself or just allow myself to live what is natural for me. BTW – I’m on the computer at night because I am doing my best thinking and I am alone and I do believe the light from the screen has a huge negative effect. On rare nights when I read instead of watch tv or using computer – I am able to settle down earlier. Thanks.

Brian Armstrong

November 5th, 2009 at 1:59 am

Hi Diane, glad you found the site and i’m the same way about reading etc. Glad you found it! :)

www.ManuelZeh.de

January 10th, 2010 at 1:43 pm

@delayed2sleep: My rhythm’s been crazy lately, it’s been driving me nuts. So I finally ordered those amber blue-blocking goggles you mentioned. How long before the desired sleeping time should I start wearing them?

Thanks!

Brian Armstrong

January 13th, 2010 at 7:27 pm

Which ones did you get Manny? Got a link?

www.ManuelZeh.de

January 13th, 2010 at 7:35 pm

Meh it’s 5.30 pm and I just woke up. :/
Yeah I got the Odysseys from the second product page here: https://www.lowbluelights.com

messedupdspsguy

February 3rd, 2010 at 6:14 am

I have something VERY similar. It’s a miracle my wife puts up with at all. She’s excellent. Anyway…

I have a DRIFTING sleep schedule due to two things. The first, is thaT I’m up longer than 16 hours, and even that varies The second, is that the time I’m actually asleep varies, anywhere from 8 to almost 10 hours. But the final result, is that I usualyl end up drifting around the entire clock! Alarm clocks don’t help. Neither do pills.

I found a temporary cure, but it was situational, albiet exhausting. When I was seperated from my wife, I was living with my mother, and, I also had a job (rare for me), that required that I got up 7 AM to catch the subway to get to work in Queens, NY. I eventually acclamated, however, I was exhausted every day. That went on for a whole 6 months. Now, I’m back with my wife living in my house again, unemployed, drifting around the clock like a lost fish at sea.

This has resulted in profound lonliness, unexplainable unpredictable waking from sleep, and sleeping from wakefullness. I’m in agony, and always end up feeling completely spaced out, isolated, with an altered state of consciousness that’s hard to bear.

I became a computer tech. Not enough to pay the bills, however, I make a small living. My email address is computerdoctor@nyc.rr.com

IF anyone wants to hang out at night at NYC and you’re female, let me know! I have an open relationship with my wife :)

rizwan

February 21st, 2010 at 12:52 am

Hi Brian!

I just noticed that this disaster have a name-an hour ago after reading that wikipedia site and after a little search,I found your page. Oh yeah, of course I am among those 0.17% population =) Things are getting worse on long hols,I slept at 2pm till 12 am yesterday,probably I’ll continue this routine untill next semester started in April.

By the way,thanks a lot Brian for sharing!

Brian Armstrong

February 28th, 2010 at 9:31 pm

Glad you found the site!

February 22nd, 2010 at 6:52 am

God, I have gone through this my entire life as well. In high school I nearly failed out thanks to this disorder but my grandpa being the wealthy man that he was paid my way through college. Same story as a lot of people on here, once I could schedule my classes later in the day my academic career greatly improved. However, dealing with the stress of this condition and the endless sleep deprivation probably took a long term physical and mental toll on those years I was developing.

A few theories on why this disorder exists. First, if I had to guess, a lot of people who have this disorder are probably whites. A lot of people are descended from those in Scandanavian countries, as the Vikings certainly got around to raping people all over Europe for hundreds of years (p.s., i’m mostly German, Irish and Norweigan). Given their bizarre seasonal patterns, with many months of virtual darkness in the country, having a set schedule was not as important as it was in other societies. My second theory is that given the prevalence of tribal warfare in much of recent society, there was perhaps a tactical advantage to have a number of individuals in any group who were prone to staying up late and maintaining maximum alertness during later hours, as these people could not only keep the watch over your tribe at night, but would also be useful for conducting raids against other tribes while they were asleep. I have to say, I am a rather aggressive person (it’s a good thing i’m kind of scrawny and generally try to avoid fights) and i’m also extremely skittish. Sounds, bright lights, and the like all keep me up. My ideal sleeping condition is a blacked soundproof room. Unfortunately, my girlfriend thinks i’m crazy for wanting to cover the windows with blankets, so that’s not really an option.

kiwi_girl

February 28th, 2010 at 11:55 pm

I strongly believe that our diet affects how we look and feel, and definitely our sleeping habits. I don’t believe any dairy products are good for us. Is it natural for one species to drink the milk of another species that was meant for that species offspring? Would a cow drink a human mothers milk?? Milk is causing endless problems for people, often without them even realising. Visit http://www.notmilk.com and read the info for yourself. As well as milk, many of us have gluten intolerances… that affect our digestive system. When the digestive system isn’t running well… this then in turn affects our sleep.

Also be careful not to automatically say “I’m a sufferer of DSPS and therefore I’ll never sleep before 3am” because if you continue to play this conversation in your mind… over and over that you can’t help it because you have sleeping problems… then your subconscious quickly buys it…. and proves it to you even more.

When I first found this blog, I was so relieved to find that I wasn’t alone and that there was a name for what I had. It was a comforting feeling… but on the downside – I became more upset and frustrated because of how many people on here can’t seem to cure their sleep problem once and for all – including you Brian. I am doing my grad diploma in teaching this year and when you teach primary, you have to be up really early. Many of the teachers actually arrive at school at 7am. This freaked me out! I was wondering how I would cope…

But I have changed my attitude and my perspective and I am coping fine. I still find it very hard to fall asleep till the wee hours… and I never do…and I always find it hard getting up before 9am… but I force myself and I find after an hour of waking I am functioning okay…and I’m able to get on with my day with little worries… just the odd yawn and sometimes unfocused attention.

I just think though that I’m probably not the only person in my class that didn’t get as much sleep as they would like, for example the ones with young children…. or other worries/ concerns.

So what I’m getting at here – to sum this up – is just remain calm and relaxed about this condition. Don’t let it define you and don’t assume it is incurable. Try eating more healthy – and see if cutting out dairy helps. Just realise that you can function okay and you can always try harder. You are strong!

Think about Patrick Swayze – he was working 12 hour days on film sets right up until he died from pancreatic cancer…. and he was surviving on 5 hours sleep a night. He gave his work everything he had – despite lack of sleep AND cancer. Most of us, only struggle with the lack of sleep…don’t let this be an excuse for why you can’t live to the best of your ability. Fight it and be strong and stay positive :)

Debbie

March 1st, 2010 at 9:28 am

What an amazing blog, thank you so much for posting this!. So many things mentioned make so much sense to me, i do wonder if i have DSPS.

Could i ask – apart from the symptoms mentioned here, does anyone else own a collection of alarm clocks, and still sleep through them ?.

Perhaps, i am a little extreme, i currently own five, all set to go off within minutes of each other and i can sleep through them all.

I live in the UK and simply hate the change in time for british summertime, it can literally take me a month or more to get used to the new schedule – i have to be very strict with myself, no nights out, bed at the same time everyday, the slightest change in my rigorous schedule will throw it completly out and im back to the not being able to sleep until around 2am – i also find that during summer i sleep slightly earlier and wake earlier – might this be light affected ?.

If anyone can help with my experience compared to theirs, please let me know !

Lesley

March 18th, 2010 at 6:52 pm

My brilliant, creative almost 16 yr old son has been struggling with ADD for years in school but now since he turned 14 the Sleep Cycle Delay has made everything so much worse. I want to get him the blue blocker glasses – can cheaper amber drug store ones work or do you have to buy the 70.00 ones from the site? Also going for the amber lights for his room. Will someone please tell him that his beloved computer in NOT his friend in this? On that thing til the wee hours. I am determined to help him get on top of this while he is young. Also I think he will start on a low dose of ADHD meds soon. Any input on how this will help/hurt the sleep delay? Great site. Thanks, The Mom

www.ManuelZeh.de

March 18th, 2010 at 10:24 pm

Hey Lesley, I used to have that problem with my DSPS that the laptop made it worse, but once he’s got the blue blocker glasses and uses those in the evening combined with blue light in the morning, he won’t need to worry about that anymore.

Best,
-Manny.

Mads

March 26th, 2010 at 2:13 am

Hey guys, first Id like to say, to the OP an Armstrong. I am so glad to have found this site, and your article is absolutely astounishing! I am definitely going to show my doc about this site.

I am one person that too am experiencing DSPS For years, I always had problems beeing a nightowl, and when I went from beeing a adolescent to a addult, the DSPS kicked inn. It’s so sick alo, I just cant seem to convince my doctor or other people that this is actually a dissorder or illness.

I have tried light therapy, but it only has short term effect on me, and I am also very uncertain when I should use it for optimal effect.

I basically have full 100% day / night reverasal. I am dead tired till about 9PM. Which makes my case extremey severe and much harder to work around around it compared to a lighter version of DSPS, going to bed at 3 AM doesnt sound that bad compared to having to go to bed at 9AM!!

Signor

March 26th, 2010 at 2:19 am

Lesley, that depends on the meds he will start on, if you give him Ritalin or Adderall, it is likely to have a possitive effect, as CNS Stimulants have a tendency of making peopole more awake and more alert!

kiwi_girl

March 26th, 2010 at 5:17 am

It would help if this condition was more well known. I wish it was common so that people were more understanding of it. When people first meet me they just think I’m strange for staying up so late and that I choose to do it. They seem to think I have a lack of self discipline for grabbing any opportunity to sleep in.

I live with it as best as I can and try keep a smile on my face… but this whole week I haven’t got more than 5 hours sleep a night…. now friday afternoon and I’m shattered. If only I could sleep in tomorrow. Oh how I would love to be a morning person!! My mum asks “why don’t you go to bed?” – at 11pm… but if I go to bed at 11 or midnight… I’ll still fall asleep at the same time. Frustrating… I often wonder how much better I would feel if I didn’t have this.

I don’t have any hope for it to be cured completely as I have been like this since i was about 7 yrs old and now 23…. I just hope to find better ways to manage it. I have found melatonin pills do help….and relaxing the mind…

Signor

March 27th, 2010 at 9:36 am

I feel you kiwi_girl, it’s not only this, but like, if I somehow manage to sleep at night, and force my body to stay awake during daytime, I usualy feel extremely drowzy, and I am just yawning all the time etc, it’s like I feel just off and not on my game, this makes it even more unpleasant to be up at daytime.

Signor

March 27th, 2010 at 9:49 am

The topic about screens affecting the DSPS is a interesting one, personaly when I think about it, my DSPS got worse after I bought a new LCD monitor for my pc back in 2007, so right now I have switched back to my CRT monitor and ontop of this I am using the f.lux program also to tone down the contrast in the evenings.

A question to Brian, do you know if there is any significant differences from CRT to LCD monitors in relation to light ?

kiwi_girl

March 27th, 2010 at 10:15 am

I guess I could be more disciplined with my DSPS… I do always use my laptop late at night :S

Going to TRY get some sleep now… 11pm here….and need it. Nite people xx

www.ManuelZeh.de

March 27th, 2010 at 1:56 pm

Get those blue blocking glasses that were mentioned in earlier comments, from lowbluelights.com, they really solved this laptop problem for me. Flux did not.

luca

March 31st, 2010 at 11:54 am

I lost my job because of DSPS… I didn’t know I had it nor that it existed… As you said in the article, looking at the DSPS article in wikipedia also changed my life. I did not understand why was it so hard for me to wake up in the morning, or why sometimes I would just sleep in till 4pm (obviously not showing up for work)… It really sucks because no one really understands this is a disease, and think you are lazy. There is a reason why people work 9-5 and has to do with their nature… I’m pretty sure that if we changed working hours to 2AM till 10AM there will be a lot of absences and people showing up late (a very common problem in night shifts).

I really hate society for not listening to me. Sometimes I feel discriminated.

Nocturnal

May 22nd, 2010 at 1:07 am

Interesting post. I’m 18 and have had sleeping problems all my life. (My mum tells me even as a baby, I went to sleep later than usual, slept right through the night and woke up late). There’s been some discussion about how computers affect DSPS… I’d definitely describe myself as a “heavy computer user late at night” but I think it’s more to have something to do at night rather than the cause of my trouble sleeping. When I was little, I’d sit up and play with barbies in the middle of the night, then I’d read, and now it’s the computer or work. I do think it could make it worse though. In the holidays I often end up going to sleep at half 6/7 every night and sleeping in til half 2-4. I don’t think I’d be as bad without the computer. Although actually, I used to stay up til half 5/6 reading so perhaps it wouldn’t make that much difference. It’s hard to tell whether hormones are having an effect too.

I came across DSPS on wikipedia a couple of weeks ago, and like many others have said, it was a revelation. It was amazing to find something that described me so perfectly. The first week, I tried going to bed earlier, but this week, I’ve been going to bed around half 1-half 3 am and getting up at half 7 for school without feeling bad or trying to force myself to sleep earlier. Then I’ve been having a nap when I get home for an hour or two. The last 3 days have been unbelievably good. I usually go to school and just sleep through everything. I can’t stay awake for the majority of my lessons to save my life. For the last 3 days, I’ve fallen asleep in my first lesson/free periods before 10am, but felt really awake for the rest of them and not fallen asleep. That’s never happened before and I rarely feel awake during school – certainly not for most of the day. It’s also never been so predictable. I don’t know if it’s establishing something of a regular pattern, acceptance, the afternoon nap, what we’ve been doing in those lessons (more active maybe), the heatwave or just a fluke but I’m looking forward to seeing whether it continues. I suspect the regular pattern is helping. Has anyone else tried a pattern like this?

Also, does anyone else have such a big problem with falling asleep in the day? I have days where I literally sleep straight through all of my lessons. It started when I was 9 with assemblys, then registration, then more and more lessons, the cinema, even playing musical instruments sometimes. My doctor thought it might be narcolepsy at first, but I don’t fall asleep in the holidays when I can stick to my own schedule and to diagnose it, he gave me a 10am-7am sleep schedule to stick to and I just couldn’t do it. I’m planning to go again with the info on DSPS and a sleep diary and hopefully get a referral to a sleep clinic. The trouble is, I want the sleep diary to show that however early I go to bed, I don’t fall asleep til 3am or so, but I don’t want to mess with this new routine whilst it seems to be working so well.

Oh and someone mentioned alarm clocks – I usually set 6 alarms (one main, 5 on my phone at different times) and sleep with them right next to my ear on full volume but I still often sleep through them all. The last time I really needed to get up, I set 8, including one on speakers that, had it gone off, would have been deafening. I set it later than most of the others (11am as opposed to 10, 10.15 etc) and figured the fear of it going off would help me wake up and turn it off. It worked, so I’ll be trying that again.

Another thing I’ve been wondering since I found that article is future careers. I was thinking about a career in research (specifically, neuroscience) before, and I think research in general has flexible hours. I’d be interested to know whether anyone with DSPS has followed this career path and how they’ve found it.

Very long post sorry, I kept adding more. Any comments appreciated.

Signor

May 22nd, 2010 at 1:36 am

Hi Nocturnal, welcome to the site :)

Ive read your story, and I feel its very similar to me, the excpetion here is that I can control my self not to slepp during the day, even though I feel extremely dowsy and feel appele to sleep constantly, most of the tims I give in because its exhausting going like that.

In your situation, if you have Acute onset of falling a sleep, even if you try to stay awake, then it does point to either narcylepsy or (idiotpathic) hypersomnia, do keep in mind that it is possible to have several sleep dissorders at the say time for example DSPS with EDS (excessive daytime sleepines) or other combinations.

My suggestion to you is that you read careuly up Hypersomnia, EDS Narcolepsy, and see where your symptoms fit in. Unctronoled sleep onset is very much pointing towards narcolepsy or hypoersomnia

Signor

May 22nd, 2010 at 1:37 am

sorry for the spellings, ive just lureda few valiums, wonder if it has something to do with it:D

Nocturnal

May 22nd, 2010 at 2:15 am

Signor, thanks for your reply. The trouble with hypersomnia and narcolepsy are the reasons my doctor ruled out narcolepsy – if I can sleep at the times I want, I’m fine, and during school time, I don’t get enough sleep. There are certainly bits of both that fit, but looking up hypersomnia and EDS now, it says “No amount of sleep ameliorates the EDS, and naps are generally not refreshing.” This isn’t true in my case. The sleep I get in class isn’t exactly refreshing because I’m constantly fighting against it and being woken up and drifting in and out of sleep, but when I get chance for proper naps in breaks or after school, it is. Hypersomnia also has a later onset.

Actually though, what you just said is the reason I didn’t come across DSPS earlier – I was looking for disorders with EDS as a primary symptom, rather than a side effect. DSPS and lack of sleep in general can certainly cause EDS, though I don’t know to what extent. Everything I’ve read about DSPS has been scarily accurate, but I don’t know whether it adequately accounts for the amount of EDS I experience.

I don’t fall asleep completely randomly, say collapse standing up, or suddenly drop down on the desk. It tends to be falling asleep leaning on my arm or my head dropping. I’ll lose consciousness for a few seconds and then wake up and try to keep my eyes open, maybe physically holding them open, rubbing them, moving my head about, jabbing my nails into my fingers etc, but they just shut and I drop off again. Repeat until someone calls me and that tends to shake me out of it. Sometimes just for a few seconds, sometimes I don’t fall asleep again that lesson. Sometimes I fall asleep for longer periods without realising it if leaning on my hand. I do it a lot whilst writing so lose control of my pen and end up with scribbles all over the page. My eyes shut whilst I’m trying to write and it ends up completely indecipherable. I wake up and try to correct it but just fall asleep again before I have the chance.

I don’t know how much that description matches the experiences of someone with narcolepsy or hypersomnia, but it gives a clearer picture of what I mean and perhaps someone will see it and identify with it.

Nocturnal

May 22nd, 2010 at 2:28 am

Meant to paste this at the bottom as source for some of the things I said. http://brain.oxfordjournals.org/cgi/content/full/124/8/1482

Signor

May 22nd, 2010 at 7:12 pm

Dear Nocturnal, both narcolepsy and Hypersomnia are conditions that affect _daytime_ sleepiness, Narcylepsy is usualy acompanied with EDS, I believe you are saying that during daytime, you feel excessive sleepiness and fall uncontrolable asleep while usualy sitting in classes etc. I assume this is all happening on daytime, which match the symptoms with both Narcolepsy and Hypersomnia.

Note that Doctors are usualy not the ones to rule out theese types of conditions. To get a diagnosis you have to undergo extensive sleep tests. And in my personal experience, doctors have litle to no knowledge about conditions like DSPS, EDS, etc. While it is easy to diagnose a condition / disease / illness that is affected by a larger % of the world population, take insomnia for example, this is a very classic type of sleeping condition, and is very easy for a doctor to diagnose. If I were you I would get a exensive sleeping tests done. Write everything down on a letter, it makes it way easier to remember and express your self correcetly. Demand that the tests are adapted to your issues, i.e if you feel you have problems falling asleep between 9 and 3PM, that’s where the tests should be aimed at.

Keep in mind, even Narcolepsy and Hypersomnia with EDS does not neccesarily mean people fall asleep 24/7, it has it’s primary focus on _daytime sleepiness_ and the inability to control wheter or not a person falls a sleep during this time.

Hope this helps

Regards Signor

delayed2sleep

May 22nd, 2010 at 8:49 pm

@ Nocturnal:

You sound like DSPS because of your delayed sleep onset and the great difficulty getting up in the morning. But the associated sleep deprivation usually causes some confusion, clumsiness, loss of ordinary words, irritability and sometimes nausea. The actual dropping off to sleep as much as you describe isn’t typical.

It is, as someone pointed out, entirely possible to have more than one sleep disorder at a time. If I were you I’d want to be checked for apnea and PLMD/restless leg. One of these combined with DSPS would explain all your symptoms. If you have anyone who can observe your sleep, ask if you snore, stop breathing for some seconds or kick in your sleep.

You mention sleeping ~4 hrs at night and then an afternoon nap. I did that for years. It turned into 5 + 5 hours for me, which eliminated any weeknight social life but kept me my job. After I retired it was many months before I could sleep more than 5 hrs at a stretch. I’m back to 8-9 hrs now, with the occasional 12-14 hr marathon :-)

DSPS is diagnosed by sleep logs and interview, preferably by specialists with lots of experience with patients like us. Overnight sleep tests may be used to rule out or verify other conditions.

Thanks for the oxfordjournals link; I hadn’t seen that one before.

Signor

May 22nd, 2010 at 10:58 pm

@delayed2sleep why would you recommend Restless Legs syndrome or Sleep Apnea? The symptoms shes describing does not sound anything like that, Apnea is where a person stops breaing for a small period of tim while asleep, this itself is not causing daytime sleepiness or suden onsets of sleep.

Signor

June 1st, 2010 at 3:16 pm

@delayed2sleep: Actually, sleep apnea can cause sleepiness during daytime, but that is usualy for people that is able to sleep during night, the apnea is cause of oxygen deficiensy during the apnea(s), but this usualy occur for people that actually do sleep at the night.

delayed2sleep

May 23rd, 2010 at 6:28 am

Oh, yes, anything that keeps waking a person up to almost-consciousness many times during sleep, can eliminate the deeper stages of sleep and cause excessive sleepiness / extreme tiredness in adults. (In small children it can cause hyperactivity.) One is sleep-deprived no matter how long one sleeps.

Signor

May 23rd, 2010 at 3:14 pm

I believe she is saying that she is falling asleep when shes on school, which is ver unlikely deep sleep phases. Beeing sleep-deprived is relative, she is describing she is feeling refreshed when she can follow her own sleep schedual outside of school/work. Although I think Hypersomnia and most definintely Narcolepsy does not make a person feel refreshed after daytime naps, as the circadian rhythm is basicaly configurated to sleep during that time, therefor drowsiness and feeling appeled to sleep whtout beeing physical tired are the most common symptoms.

Nocturnal

May 23rd, 2010 at 4:59 pm

Thanks for all the replies. It’s good to discuss this with people who’ve actually experienced DSPS.

Ok, first of all, I am hoping to get a referral to a sleep clinic asap. There isn’t one anywhere near me but there is one where I’m going to uni so hopefully I can get a referral in time for next term. If my current doctor won’t give me one, I’ll have to change doctors when I go away for uni anyway. I’ve been to the doctors a few times before about this, with the emphasis more on the sleeping during the day as that’s the biggest problem, but I have mentioned everything else. I’m intending to go again once I have a sleep diary to bring.

Ok, firstly, I’m sure it’s not sleep apnoea or restless limb syndrome. Once I’m asleep, I sleep incredibly soundly and deeply and never ever wake up in the night. Even as a baby, I didn’t wake up in the night after the first few weeks. I went to sleep late and stayed asleep all night and morning whilst my mum was getting ready for work. I don’t know if that’s a symptom of anything but as far as I can see, it’s a good thing, except for the sleeping through alarms and possibly emergencies. (The latter has never happened so I don’t know if I’d wake up or not). I’m also as sure as I can be that my legs don’t jerk and I don’t snore. I’m certain I don’t have breathing problems.

Another thing is, I’m not sleep deprived no matter how long I sleep for and don’t fall asleep if I get enough sleep. This is why my doctor ruled out narcolepsy and said I just wasn’t getting enough sleep. Also, I feel constantly exhausted when forced to get up at half 7 every day and spend pretty much all day every day wishing I was in bed or somewhere I could sleep. (Then when it gets to around 9pm, I feel wide awake and can’t sleep). Drowsiness or feeling appeals to sleep without being physically tired is certainly not one of my symptoms. As well as the actual falling asleep, I’m usually confused, clumsy and disoriented. I walk into things a lot and constantly forget what I’m trying to say. Again, this doesn’t happen if I get enough sleep.

If there’s a medical reason beyond DSPS for my falling asleep in the day, it isn’t restless legs or sleep apnoea and I’m pretty sure it isn’t hypersomnia or narcolepsy either. Narcolepsy involves sudden onset of sleepiness which isn’t the case and I don’t have cataplexy (present in 4/5 cases iirc) or vivid hallucinations (had some double vision and seeing coloured splotches but nothing like those with narcolepsy describe). Hypersomnia does not involve lack of night time sleep and even if I could have that alongside DSPS, my EDS wouldn’t go away when I could get some sleep. Personally, I think it’s caused by sleep deprivation and generally having too much on and perhaps a general (non pathological) need for a lot of sleep perhaps due to my age. In other words, I suspect it’s a secondary symptom of the DSPS. Unless anyone knows anything that fits better?

Signor

May 24th, 2010 at 2:09 pm

Nocturnal, People who come to this forum are people who has usualy for a long time, felt they dont fit in, and more often then not strugled for years by having delayed sleep patterns, and difficulty staying awake during daytime. This latest post your are describing you dont have theese symptoms, If you can go to bed at normal times, sleep through the night, and be awake during the day, then it’s definintely not DSPS. And as I understand you, when you get enough sleep, your problems dissapear, so yea, sleep deprivation does sound likely.

Nocturnal

May 24th, 2010 at 6:22 pm

Signor, I’m not sure where you got that from… I can’t go to sleep at normal times because, as I said, once it gets to around 9pm I start to wake up and feel at my most alert. However, once I do fall asleep (generally between half 3 and half 6am) I sleep very soundly. This is actually part of the ICSD diagnostic criteria for DSPS (points 2 and 3). Because I can’t sleep until late at night, when forced to get up at half 7am for school, I end up sleep deprived and so fall asleep at school constantly. In the holidays when I can stick to my own sleeping patterns (about half 5am til half 2pm), I don’t keep falling asleep everywhere after getting out of bed because I’m not sleep deprived. This is why I don’t believe I have narcolepsy or hypersomnia.

I think the confusion arose because I was using “night” to refer to the time I sleep because well, that’s the conventional sleep time, but in actuality, I get almost all of my sleep in the morning. However, I mentioned several times in my posts having a delayed sleeping pattern from being a few weeks old and being unable to fall asleep at night, stick to the sleeping pattern set by my doctor, get up in the morning or stay awake during the day.

As for why I think I have DSPS, everything I’ve read about it has fitted perfectly. It even mentions unexpected things like occasional 36 hour days, being at my most alert and able to work at my best during the night, sleeping through dozens of alarm clocks, the very early onset, and uses phrases that have been used to describe me like “permanent jet lag”. I’ve always asked if it’s possible to be biologically nocturnal which is why it was such a revelation finding this.

Signor

June 1st, 2010 at 3:18 pm

Does anyone here have actual problems with daytime sleepiness / feeling drowsy, or appeled to sleep when you force yourself to be up at day and sleep at night ? And by that I ofcourse mean in someway adjusting your sleep cycle in some way, either by light therapy or chronotherapy or whatever works for you

non24hourguy

June 12th, 2010 at 4:07 am

To Brian and all people with similar sleep disorders,

It’s been awhile since this blog entry but I just found it while doing some research. I wanted to post because of what you said about melatonin, because it’s been my saving grace. You see I have an even more extreme kind of circadian rhythm sleep disorder known as Non-24 Sleep-Wake Syndrome. Basically our problems are very similar, a broken circadian rhythm. The difference is that while both disorders don’t allow us to fall asleep earlier, even if we got very little sleep, my sleep time MOVES FORWARD 1-1.5 hours every day. And believe me I tried EVERYTHING ever mentioned or even hinted at in pubmed articles or elsewhere to fix it (including melatonin, bright light box therapy, and every supplement known). When I was about to give up I FINALLY found something that worked for me, it was the melatonin on a precisely controlled regimen, and what I learned I hope will help you.

I’ve learned treating circadian rhythm disorders ultimately come down to controlling melatonin and it’s phase response curve, as its called. Normal person: low melatonin in the morning and during most of the day (wide awake), starts increasing in the evening (progressively tired) and peaks during sleep. Normal time to complete cycle=24 hours. Me=cycle LENGTHENED to 25-25.5 causing condition. You=cycle is 24 hours but OFFSET causing condition. This cycle controls when we can fall asleep, especially that ability that we covet above all: to fall asleep earlier. It was tricky to figure out and it took TONS of experimentation (which didn’t matter since this is my LIFE here) but I found that a specific size dose of melatonin every day at exactly the same time WORKED BEAUTIFULLY.

Let’s get a few things squared away about melatonin. It’s dirt cheap, couple pennies a dose. It’s also IMPOSSIBLE to build a tolerance to it. It doesn’t even work that way, since it’s a natural hormone your body makes. I’ve been on it for years (and will probably be on it forever) and it’s worked exactly the same. After a thousand tweaks, my routine is: take 5 mg of melatonin at exactly 8 pm, fall asleep at 11pm-midnight every night, and wake up at 8 am. Remember, we’re NOT using it for the reasons normal people do. They use it to make themselves sleepy, so they take it just before bed. We’re using it as a CHRONOBIOTIC, or biological time keeper, to impose a normal schedule on our out of phase one. 8 pm is when melatonin levels begin to rise in the phase response curve for someone falling asleep when I do (11-12), so taking it precisely at this point for me means I can sync my circadian rhythm to a normal 24 hour cycle.

I don’t know how well what works for me will work for you, but for me it’s been nothing short of a life saver. Couple of tips if you want to try it:

(1) Timing: I had to choose the day to start the process perfectly, because it DOES take time for your body to sync with the rhythm your creating. More so for me because my sleep time was a moving target! But for it to work you have to take it at the EXACT same time EVERY single day, so pick a time a couple hours before you want to sleep every day to take the dose, and STICK TO IT. Then pick a time you want to wake up (this depends on how much sleep you need) and set your alarm and wake up at that time EVERY DAY. Even if you feel tired all day and sleep wacked out hours for awhile, ALWAYS take the melatonin at the same time and ALWAYS wake up at the same time, I can’t stress that enough. I found exactly 12 hours separating the melatonin dose and waking up worked for me, and you want a similar spacing to that since when it started to work I got some cushion time (like a normal person would) between 10pm-12am when, if I’m really tired, I can *GASP* actually go to bed earlier, like at 10pm (10 hrs sleep time) and catch up if I missed some sleep, instead of a normal 12am time (8 hrs sleep time). Remember though, you’re NOT taking it for the sleepiness it causes after you take. If you find yourself falling asleep 30min after you take it, that will get easier with time. I don’t feel sleepy at all after I take it now.

(2) Dosing: This is what threw me off at first. I tried starting at 5mg, which was the largest dose I found. No go, wasn’t enough punch to get the process started (which is the hardest part) so I threw in the towel and went to other treatments. Only when I went BACK to melatonin after trying everything, and found a study talking about starting at even higher doses and working your way down, did it finally work. Starting at 10mg did it for me, you might only need 5mg, or you might need 20mg to start who knows. Melatonin is really safe (taking more simply means more sleepiness), so at the start it’s ALL about getting a dose that snaps you into a normal pattern. It’s better to start high (at least 10mg), since you ALWAYS want to work your way from high (locks in normal sleep cycle, most side effects) to low (maintains normal sleep cycle, less side effects) . Higher doses DO cause more next day drowsiness, and if I had to stay at 10mg forever I probably would have stopped taking it since it wasn’t fun. You have to keep your eyes on the prize, since you only need that high dose for the initial entrainment (medical word for syncing), once you’re completely stable you work your way down. SLOWLY though, I took 5mg tabs, broke them into quarters, and went down by 1.25mg every 1-2 weeks. Ended on 5mg, which is infinitely more tolerable than 10mg, and doesn’t make me sleepy at all anymore, even though I take it at 8pm which is smack in the middle of some really productive hours (6-12). I’ve tried to go lower 5mg, but for me no matter how slow I go, (even going down 0.5mg every 2 weeks) lower doses start to cause the dreaded “advancement” so I instantly go back to 5mg. Maybe you’ll need less, or more. Takes a lot of trial and error.

(3) Side effects: The only side effects I’ve ever got from it are varying levels of tiredness that are based on the size of the dose. Doses higher than 5mg, especially 10mg or higher, seem to spill melatonin into the next day a LOT more than lower doses, and they can be pretty tiring when you’re starting out, but ACCEPT that as something that you need to PUSH through for the end result and you can get through it. The end result is beyond worth it.

Sorry if this turned into a novel, but I just wanted to share some of the knowledge I’ve gained and I hope it helps. Maybe some people with these kinds of sleep disorders don’t care about (or even like) sleeping at a different time than everyone else, but then again, the world doesn’t care either! When your sleeping, people will still call you, businesses will still open and close, events will still take place, friends and family will still do fun activities (only without you). I think it’s at least worth a TRY for everyone, melatonin is crazy cheap, and you can always stop taking it. As for me, you couldn’t make me go back to how it was before for ANYTHING. Peace.

Brian Armstrong

June 15th, 2010 at 1:56 am

Interesting…are you in the U.S.? Where are you getting Melatonin?

I’ve had trouble finding it here, but when I was in Argentina it was easily available. Thanks for the comment and sharing your experience with it!

non24hourguy

June 18th, 2010 at 6:00 am

Yes I’m the US. I can’t imagine why you would have trouble finding it, melatonin is available online from pretty much every website that sells supplements, and just about every grocery/drug store that that I’ve been in sell it as well. I don’t know where you live, but walmart is everywhere and sells it for $9/120ct:
http://www.walmart.com/ip/Spring-Valley-5mg-Melatonin-120ct/11047659
You can get it online for less, but no matter where you get it from it’s going to be dirt cheap.

Brian Armstrong

June 23rd, 2010 at 5:09 am

Yep – good point! Looks like you can even buy it on Amazon.com. I was looking in drug stores like CVS or Walgreens. Thanks for the tip!

kiwi_girl

June 13th, 2010 at 12:27 pm

Must remember to go to the doctor and get more melatonin pills this week… the only thing that makes me sleepy!

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