Friday, December 24, 2004

Delayed Sleep Phase Syndrome OR The Man with Two Brains

After a particularly stressful period in my life back in 1996 I started to develop problems that my doctor had labeled as depression. I would find myself being unable to sleep at night, having problems getting up in the mornings, and forgetting even the first names of work colleagues I had worked with for years. Only after several years did I notice there was a seasonal overlay to these problems. They tend to happen most in the winter, with some winters being worse than others, for reasons that are still not clear. And at the same time as I latched on to SAD (Seasonal Affective Disorder) and started experimenting with Light Therapy I was also diagnosed as having Auto-immune thyroid disease and low thyroid function. Treatments for both were mildly helpful, but the problem persisted. My doctor continued prescribing antidepressants even though after about 8 years (8 years!) I decided their effect was also, in fact, marginal.

Then about a year ago I learned of a condition that actually described my problem quite well. Delayed Sleep Phase Syndrome, or DSPS. In DSPS, people seem to have the onset of sleep delayed until 3 or 4 in the morning. A period of sleep then follows, which in my case is usually about 7 hours, so I typically might wake at about 11. But this sleep is not refreshing at all and it might take another hour before I can really get out of bed and get moving. When I visit the bathroom I am met in the mirror with a red, blotchy face, especially around the nose and eyes. I now suspect that this is caused by histamine, a hormone that plays a role in promoting wakefulness.

In normal people, in the last 2 hours of sleep, cortisol levels rise markedly and this period is also associated with REM sleep and dreaming, functions that are thought to promote organization of knowledge and memories and thoughts... i.e. higher brain functions. People deprived of REM sleep eventually become disorganized and dis-oriented, so REM sleep is considered to be very important. In most people, a 7 or 8 hour sleep period is followed by a period of activity during the day, with a progressive slowing down towards the end of the day, followed of course by the start of the next sleep period.

In people with DSPS, the period of intense wakefulness happens at night and the sleep period is not followed immediately by a period of intense activity.

This describes me quite well. In fact I am physically awake at 11 am, but mentally still asleep. At about 4pm (say) as daylight begins to fade, I can get very tired and sleepy, but of course sleep is not always possible, especially if at work. Rest is about as much as you can do. If I do get the opportunity to sleep it is usually a short sleep of perhaps one or 2 hours, but is incredibly refreshing. I wake up and finally have the energy and motivation to do things that I have been lacking all day. Unfortunately the energy boost is short lived so by midnight, physical exhaustion is back, but mental activity remains high until 4 or 5 in the morning.

What is going on here? Well, I have not been able to get a proper diagnosis or help but here is what I think is happening.

My feeling is that, when I am in this DSPS condition, I am not getting the 2 hours of REM sleep and my cortisol levels are low in the morning instead of being high. This means I have a depressed mental ability for most of the day. So although my lower brain is working and controlling my limbs and my physical being and I am walking around with the rest of the world, my higher brain is in fact only just about ticking over. It might just as well be fully asleep sometimes, because in the nadir of this condition I am mentally capable of nothing in the mornings or afternoons. In the late evening my lower brain is winding down my physical body, but my higher brain is only just waking up. Hence I am the main with two brains, each running on a different bio-rhythm. It is no wonder that I feel like I am only half my normal self at this time!

Because I get the boost in energy levels in the early evening, I believe that I am getting my circadian boost of cortisol from about 7pm, reaching a peak at about midnight. I very often am physically exhausted at this time, being incapable of any physical activity, yet totally unable to sleep. The mind is too active. And I believe that it is primarily the action of histamine that is waking me up in the mornings, judging by the bright red blotches on my face that will go away as the day progresses.

Now there is a family connection here. My mother, in her later life, stopped working and would often be asleep until late morning and describer herself as feeling pretty useless. Yet my father, who used to work at nights, would come home to discover that she had been sitting up all night, intensely listening to the radio. She also had other problems which fortunately I do not have, but I do think that there is an inherited characteristic here. Which leads to an interesting question. Debilitating as this condition is to the suffer, why has it survived? Does it confer a biological advantage? And is the reason that this tends to come on the winter somehow significant? I believe it is, and here is why.

The life we lead today is nothing like the life our ancestors led. It is their lifestyle needs that shaped their biology and in particular, gene characteristics that conferred a biological advantage. So what can possibly be so biologically advantageous about DSPS? Well actually, I think it is quite obvious.

One of the most important problems for our ancestors that migrated over millennia out of Africa to the northern and southern hemispheres would have been how to survive those long winter nights. Hypothermia is a killer even today. It would have been a major killer too for our ancestors. At night, when we are asleep and our body temperature drops and we lose consciousness during sleep. If we get too cold, we could easily die. So being awake and keeping that body temperature up, whether by keeping a fire going or just by being awake and being active, might be the difference between life and death. As hunter gathers, the human population in winter time has no need to be particularly active. Hunting is difficult and energy consuming. Better to live on those starchy foods put aside for the winter (is this sounding familiar?) and conserve energy by being relatively inactive. No need for much cunning in the wintertime (a higher brain function). And what better time to sleep than as the sun is coming up and temperatures will again be rising and not falling. So I am living out in this modern world, a pattern of behaviour that kept my ancestors alive but makes my life as IT Manager quite hellish in winter.

It is interesting to ponder why "depression" is so closely related to "stress". Why on earth did such a situation arise, and what possible benefit could it be to the species. My condition almost certainly arose after a very stressful life event, as indeed was the case with my mother. Perhaps the evolutionary story above is the clue. The stress of winter survival would certainly be a real stress for our ancestors and its onset could have triggered this potentially life saving condition. Its just that our bodies are driving by chemical signals and there is not much to distinguish psychological stressors from physical ones.

In due course, we may evolve out of this situation... but that is little comfort for me today.






13 comments:

Anonymous said...

I have been suffering with this condition for over half my life. I now have the best job that I have EVER had, and I am about to loose it because of this damn condition. My boss actually used the words, "...if you want to keep your job..." Now I am sitting here, crying, wishing, praying for a normal life, and trying to find a way to stop this thing that has controled my life.

Om said...

I've been living with DSPS since I hit puberty, although I didn't have it diagnosed until a couple of years ago when it finally occured to me that it might actually be something physically wrong with me. Since then I've been toying with ways of dealing with this... thing. I've lost more jobs than I can count to this condition. Its never stops amazing me the number of people (including my parents) that don't believe such a condition exists (or at least that I have it).

Best I can do is manage expectactions and live with the disappointment of others and myself.

I am also Bipolar (type 1) which probably explains where the DSPS comes in (apparently it's not uncommon for the two to appear together). Didn't get diagnosed with that either.

I've been looking into various sleeping pills and am hopeful to find out (and hopefully soon try) about Sonada which seems like a great treatment for DSPS since it only works for a couple of hours, long enough to get the DSPS person to sleep without leaving them drowsy in the morning.

Anyway. Thought I'd share. So good to hear there are others out there with this thing.

Om said...

Sorry, the pill is called Sonata, http://www.sonata.com/sonatanow/

Anonymous said...

I also have all the symptoms and was officially diagnosed with DSPS. I have gone to every sleep doctor in town and tried every therapy with no results. I recently lost a great job after 9 years with the company. My problem now is that I can't even wake up at a decent time to interview for a "normal" job.

If anyone has any new research info, please post.

Sauna-Ukko said...

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Anonymous said...

Hi my name is Deyon I'm 26 and I happy father of a 1 year old baby girl. Though I haven't been Diagnosed with DSPS and I haven't seeked out help for it yet mainly because I only just learned that I'm not crazy or like a 1/3 vampire or something and that my symtoms have something to do with a real condition. Truth is I know more than ever that I've had this condition since birth. I was lucky however my mother always worked two jobs that were swing shift and night shift,she was a night person by prefference and lifestyle. so she was a little more sympathetic on her off days we would have breakfast at three o'clock in the morning, my mother being a good parent would always try to enforce a suitible bed time but always I would go to bed but never sleep my mind would be very active also I'm not sure if this is common in those with DSPS but I can also see in very very low light situations and I'm extremely light sensitive also in the morning sometimes I can't see or smell an I have no appatite during the daytime hours I feel that it is due to my body knowing it's suppose to be asleep. I wonder if other sufferers share this unique affliction? As I was saying I was pretty much I was lucky to have the type of home life that I did So having DSPS wasn't a problem until I became school aged around kindegarten and 1st grade. Before this age I even if I was up all night there were plenty of napping oppertunities even in day care nobody minded a kid being too quiet. School was very hard difficult for me. I learned very slow. I couldn't comprehend most basic concepts, I couldn't fully recite the alphabet with out singing the song until the end of 6th grade and I couldn't tell my right from my left until my freshman year of high school. My attendance was poor and I got made fun of a lot by my peers and the people in charge teachers and doctors and family just thought I was lazy. which is pretty sad because I love to learn about everything just not during the hours of 8am to 3pm. well long and behold sense I'm what people would call a gen Xer I was still a child during the ADD ADHD craze. I was diagnosed by my doctor around 5th grade and put on ridilin. Wow I thought I was a zombie before Now I was a zombie that couldn't die. the ridilin had terrible effects and my grades didn't get any better either. The best part was the understanding because finally I had something people around me could understand sympathize and respect. so that took some of the pressure off. Even though that was nice I never use it as a crutch. Things at home got progressivly worse as the years went on my mother didn't know what to do with me I seem to be heading down hill. and My mom was losing patence. I was only going to school 3 to 4 days a week when I was at my best, other times I was sick all the time, and when I wasn't sick, I pretended I was just so I could get some rest. On those off days and weekends I would sleep 12 maybe 14 hours at a time. at the end of my 8th grade year I had been in resource classes or special education since my second year of 3 third grade I'm 2 years older than any of my peers and 4 times behind my classmates academically. At end of my 8th grade year I was up for my IEP or individualized education plan. to judge where I was academically I'm not sure how I did on that test but all I know is by my freshman year I was in special special education learning with kids with developmental disabilities. Deep down when I thought about it I knew I didn't belong there. academically I was the smartest person in the class even too smart for the class but I couldn't keep up in even the slightest resource level above it. I rode the small bus to school which was great because it came right to my door the bad was it came at 6:15am when school started at 7:50am that certainly didn't help my attendence or my studies. Life became very scary for me, because when most of my few friends were talking about colleges they would like to attend I was afraid that I wouldn't even get passed high school special ED or not how could I tackle the real world. Just imagining holding a job seemed like something out of a fantasy novel. but it was coming down to that time of my life and I had to do something. I had to get a grip on my life I started staying up all night so I could make it to school, also I took 2 gym classes a day so I could stay awake and make it through the day it didn't last after about 2 weeks of perfect attendance and a month at 4 consecutive days a week it all fell apart I tried taking naps when I got home. this made my mother angry because she knew I was up all night but she thought it was because I was napping in the afternoons til about 10pm She figured thats why I couldn't get up in the morning I tried to tell everyone my mom tried giving me sleep aids which not only delayed my sleep longer but the sleep that I got wasn't restful at all it was a chemical sleep I only laid in bed paralysed from the drugs while my mind ran rampant and later would have to sleep off the sleep medication I didn't like how that felt so then I tried to staying up so long about 36 hours so I would be so exsalsted I would have to sleep all night it worked how but I was no longer going to bed and sleeping I was simply passing out from exsalstion. and still couldn't manage to wake up in the morning no matter how early I went to sleep. after awhile my mother just gave up she wouldn't try to get me up for school anymore. There where no more lectures so during my last senior year I got a job which was nice I worked swing shift around 4pm to 12pm which was nice then I started working graveyard shifts which was perfect
school started up again I had to quit the job because it was either on or the other. My teachers all but gave up on me. But I had one thing that no one else that remember that IEP? Well during my last senior year I say last because I had 2 of them. The IEP allowed me to work out a deal with the school so I could just work for school credit by simply holding a job. and they would just check in every now and then. this allowed my to work a job that started at 11am and that I could do in my sleep anyway. so I did that for the rest of the school year and graduated with honors with a legal diploma. after that I worked jobs that fit my needs and respected the fact that I was a night person or jobs that I could do in my sleep literally. As long as I was able to do that life got a lot better. I didn't have the social life but I knew I was going to make it I even got a girlfriend who loved me for who I am. I was finally on my way to a normal existance exept I just had to sleep all day and stay up all night and that was fine it was natural and life was good well fast forward a little bit like all adults do we decided to have a baby. I also decided that I wanted to be a stay at home dad. mainly because I didn't have a dad and I wanted my daughter to have a great one. Second my girlfriend has those 9 to 5 skills that make her a lot more employable than me. Sounds like a winner right? Well now I'm suffering worse than ever I want to be a great father more than anything in this world but I find it nearly impossible to care for my daughter other than the bare essentials feedings diapers etc. because she wakes up in the morning and I can't. I can't play with my daughter like I would like to or do the things that a homemaker should mainly because I fear leaving the house with my daughter for fear that something bad will happen to my daughter because I can't react or pay attentiion well enough. I have lost my wallet 4 times in the last year I have zero energy and Now I fear for my daughter's development and my relationship with my girlfriend and daughter because of this debilitating condition. It's one thiing for my to suffer Because of DSPS but my family is too high of a price to pay. I hope someone will read my story and draw strength gain understanding that this is a very real and debilitating condition That deserves proper attention soon. If someone can give me some info on how to cope with this or just talk on a serious level it would help me out alot. thanks

my name is Deyon Long
my e-mail is Raquio@hotmail.com

Scott said...

I have this same problem. I've experimented with taking melatonin before bed, and using a bright blue light in the mornings. I definately feel an energy boost from the light. I'm a teacher and especially spiral out of control sleep-wise in the summer, combined with low mood. I'm up all night and don't get anything done. I've found that if I get up early and try to get out the door and hang out outside it helps. But in the winter, the time I wake up doesn't feature sunlight, so the blue light helps more.

I've read some speculation that computer monitors, TV's and artificial lights, being closer to the blue spectrum of the sun, can make the problem worse when used at night. I definitely surf the internet all night and that's part of the problem. I just read someone's suggestion to turn off all lights a few hours before bedtime and use red lights or candles which are red spectrum lighting. Some research shows this encouraging the production of melatonin.

They also sell sunrise alarm clocks where a light gradually goes on to wake you. That seemed to work. I am also reading that I need to make my bedroom completely dark, since light at night, even on a bathroom trip, can screw up your circadium rhythym.

I'm also a nighttime snacker on high carb foods, and wonder how that fits in. I've read some info about exomorphins, morphine like byproducts of wheat and milk foods created by the bodies of people who don't tolerate those foods well. The theory is that these exomorphins make us literally addicted to these foods, and that a side effect of eating them is a brain fog and decreased mental performance. But they may also encourage sleep, so we may eat these things to try to help ourselves sleep.

When I did the Atkins diet, one thing I totally noticed was waking up without the brain fog I had become used to. It was really striking. I'm planning to try Atkins again and see if I can replicate the effect, since school starts again soon.

Maybe if I combine the blue light, red light, gradual on "sunrise clock", low carb diet, melatonin and some exercise I can get some relief!

A big part of the pain of this condition is being seen by others as lazy, and also seeing yourself this way. I used to time my sleep, and realized however crazy my sleep habits were, I didn't sleep total any more than anyone else, and that helped me feel better. It's nice to read other people's experiences and how hard it is to overcome this!

Anonymous said...

Wow, Didn't realise this was a common problem. I am sitting up awake at 2:20am and I decided to search the web to see why I can't sleep because I am getting tired of it (No pun intended).

Growing up I would often be awake late at night and all through my school years I would often sleep in class. I even fell asleep during my high school final year exams.

I got a few jobs after school and eventually became an IT manager. I often used my lunch breaks to sleep and I usually felt recharged after the nap.

I was laid off from this job and for many months now I have been getting out of bed at around 11:30am. I do wake up a bit before this but it can take around an hour before I feel awake enough to get up.

Finding this site has given me hope. I know I'm not alone.

I may even start searching for a night time job. Hey maybe they'll even pay more for out of hours IT work =)

Sauna-Ukko said...

OK.. this is the blog owner replying to a number of recent posts.

I actually think I have cracked this problem, and it does go back to what I have said ealier about this being an adaptive survival genetic/behavioural trait. I also think another syndome is deeply related... insulin resistance.

I am going to update the blog today so you can see where I am coming from and, more importantly, how to get OUT OF THE RUT!!

Unknown said...

HELLO. I realize that this post is over 4 years old, but I am a high school senior WHO UNDERSTANDS ALL THIS COMPLETELY. I'm sick of my shrink labelling me as chronic depressive and of my family and teachers derisively calling my lazy and obstinate. The fact that delayed sleep phase syndrome is a valid medical condition is such a relief to me. Even if no one replies back to this, I'm content to know that there are others out there who are suffering like I am. If someone does, by chance, come across this, I would love to talk or just trade ideas/comments/complaints/etc. You can reach me at wildchildsmiles@gmail.com

I read a pretty self explanatory article on this on wikipedia, now I just have to show it to my mom in hopes that she understands that my inability to wake up for school and my going to sleep at 3 AM every day is NOT my choice, nor my idea of being "a lazy, good-for-nothing teenager".

...Thanks for this.

Anonymous said...

Hello all, I'm Billy and I'm a 17 year old living with DSPS.

Since this "thing" started, I've dealt with the incredible stress it's put onto my family and myself. I've dropped out of high school, lost my senior season of football, my most beloved activity, and found myself enrolling in night school in order to get my high school diploma.

The fact that DSPS is hardly a diagnostic condition makes its proper identification hazy. Those of us who have searched every medical route, my own story including visits to some of the world's finest pediatric institutions (Boston's children's hospital and Providence's Hasbro Hospital), know that when you've tried everything there is from melatonin to chronotherapy and you have gotten no where, adjusting your life to fit your condition is the only way to go.

It seems unfair that those of us sick with this won't get the same chances as our normal counterparts, but the way of the world it is.

A few tips I have learned; If you want to pursue higher education, pick a field where hours are not so much an issue (Culinary Arts, Journalism, Criminal Justice) and attend a community college, AT NIGHT, for your degree to these fields. No one says that because your sick means you can't be successful

Anonymous said...

I don't know if anyone's going to believe me, but it's 10.30am now and i'm wide awake. Had tried falling asleep around 6am (my usual timing nowadays) but couldn't; so thought i'd surf the web.

Anonymous said...

i meant 10.30 am local time - in singapore.