Living with Delayed Sleep Phase Syndrome

Have you ever heard of this sleep disorder called Delayed Sleep Phase Syndrome? I have a close relation, a family member, who apparently has Delayed Sleep Phase Syndrome. For the past 30-odd years, this relative has never had a “normal” sleep time. She goes to bed not earlier than 4 am, and sometimes at 7 or even 8 am, while waking up well into the late afternoon, typically around 2-3 pm; sometimes at 4-5 pm. By all accounts, this is what is called Delayed Sleep Phase Syndrome (DSPS).

It will seem strange to others who have never met anyone with DSPS, or experienced this condition themselves, but rest assured, this disorder is very real, and often unrecognized. It is also pretty uncommon statistically, which is why many assume my relation is having a mental condition or just a case of bad attitude, when they hear about it. Many assume she is lazy, because she watches TV late into the night; what they don’t realize is, she can’t sleep even if she goes to bed early!

People with delayed sleep phase syndrome can never sleep at the assigned time, and are often very alert at night.

Common symptoms of delayed sleep phase disorder

Delayed Sleep Phase Syndrome seems to run in families (my relation’s mother also has the condition), and it is often misdiagnosed as chronic insomnia. The difference between chronic insomnia and DSPS though, is that people with DSPS do feel sleepy and sleep, but at the wrong time.

It appears to be linked with some malfunctioning of the circadian rhythm, but only in the sense that the sleep-wake cycle timing is off. They do get bouts of insomnia where they don’t sleep for a couple of nights, but it is only temporal; most of the time, they do sleep 4-6 hours or more daily. They also wake up much later than what would be socially acceptable – Usually in the afternoon. Asking them to wake up earlier is almost impossible for them, because they would be in the middle of sleep by then.

There are usually no serious effects from DSPS; only thing is, these people are not your usual folks, and they cannot get a proper 9-5 kind of job. Their sleep timing may change from time to time, so they may go through these periodic “phases” where they may fall sleep at 4 am, and others where they fall asleep at 8 am and only get up in the evening.

There is no complete for delayed sleep phase syndrome, unfortunately

DSPS often begins during adolescence, and then it abates, OR it may continue for a lifetime. It can also progressively get worse, as in the sleep time moving further and further up, until the person with DSPS has an almost totally reverse lifestyle from normal people!

There is unfortunately, no satisfactory cure for serious cases of DSPS. Most people like my relation, have adapted to it (but she is lucky because she has not worked for decades and the family supports her). Many find jobs that have odd hours, or are flexible enough to fit their unorthodox sleep times.

Some websites may claim to have success with certain therapies, or procedures, but they do not work for everyone. In the case of my relation, she has lived with this for well over 30 years at least, and although somewhat elderly, is actually quite healthy, apart from her sleep condition.

The two agents for tackling circadian rhythm disorders are always light and melatonin. In the case of mild DSPS:

  • Light therapy – Exposing yourself to light in the morning and avoiding light as much as possible at night.
  • Taking melatonin a few hours prior to bedtime.
  • Adopting a strict sleep hygiene regimen (requires plenty of discipline). Using a sleep eye mask to regulate melatonin output.
  • Chronotherapy (Requires constant discipline).

The drawback of behavioral therapy like chronotherapy is, very few people are disciplined enough to stick with it for a sustained period of time, since those with DSPS do get their daily sleep quota – so may not be sufficiently determined to follow through with this night after night. And, any non adherence to the regimen will cause a relapse.

Can you get DSPS if you constantly sleep late?

This is a question of which I don’t yet know the answer, but I do think in today’s 24/7 world, there is a real risk of damaging your circadian rhythm clock (within your hypothalamus) for good, by constantly pushing your bedtime later and later – because you could very well find it extremely difficult to reverse it later on, and this may then develop into mild DSPS!

If you suffer from Delayed Sleep Phase Syndrome, I’m curious to know how you deal or live with it.

8 Responses to “Living with Delayed Sleep Phase Syndrome”

  1. Jeroma McSanders on May 29th, 2011 at 3:49 pm

    Hi! DSPS runs in my family on my father’s side. My father, grandmother, two aunts, and cousin all have it (including me). My “sleep cycle” is from between 5-6 AM usually and 2-3 PM. I am aspiring to become a doctor, so I will probably be fine. My boyfriend however is a morning person and we usually only talk or see each other between 3 and 9. :) My parents used to always wake me up in the summer or on the weekends because they thought I was lazy. I used to have poor sleep as a result and could have done WAYYYYY better in school.. Thanks for this information though! :)

  2. @ Jeroma

    Thanks for sharing your experience; I guess your BF’s used to it, huh? :) This person I described, is a very close relation, so I’m hoping it doesn’t rub off on me later in my life. She has this sleep cycle for like, 30 years, and that is a very long time!

  3. I’ve suffered from DSPS since hitting adolescence (I’m early 40′s now). It makes life difficult. Fortunately I don’t have the worst possible case of it, and at various times over the years I’d even managed to have a regular bed time as early as 12:45am, though often times much later.

    In college I had a major emphasizing book learning and tests, with old-school professors who didn’t care if I missed a lot of classes; therefore I skipped most of my classes before noon and still got A’s. I’ve heard that nowadays colleges in the US are increasingly basing grades partly on attendance because research shows that it’s important. People with DSPS would not fare well in that situation and I fear it will marginalize them further by preventing them from being successful in college.

    In my career I’ve been a programmer working for organizations that tolerate all manner of eccentricity (national labs, defense contractors, and Internet companies) and my managers have never had a problem with my late-shifted hours, even when I’m coming into work mid-afternoon at times. I don’t know how much of this is attributable to luck on my part.

    My DSPS has gotten worse over the last few years and I attribute that to late night computer use–there’s more compelling content on the Web nowadays. For skeptics of DSPS it’s important to note that I was staying up into well into the morning pre-World-Wide-Web, and I was not a big TV watcher. Often times I was just sitting around waiting to get tired. Getting up early (and being exhausted all day long) did nothing to help it.

    There’s a mailing list for people suffering from DSPS that’s worth being on at http://www.circadiandisorders.org.

    Tim

  4. Hi Tim,
    Thanks a lot for sharing your own experience with DSPS. I think DSPS could be increasing, as there are really so many reasons not to go to sleep nowadays.

  5. DSPD is not curable because it is actually a genetic disorder. they have located the gene that causes DSPS so basically you have to live with it. I’ve had it since 12. it can be a nightmare. you get called lazy, sorry, etc etc. you may be able to do things to make it tolerable and everyone should try to find solutions that works for them. understanding it is the best way to control it because if you don’t it will control you. I’ve suffered for 35 years. it is better at times but it has effected every aspect of my life.

  6. @ Jl Spiers
    I’d like to live in the hope that such a thing can be fixed. Before I found out about DSPS, I always thought this family relation of mine, was like you said, lazy. She has had it since the early 80s at least.

  7. Patricia Charlton on January 3rd, 2014 at 1:53 am

    I sleep my best from about 3-4am to as long as I’m allowed to sleep, sometimes 8am or sometimes 12 – 24 hrs. I can adjust my schedule to that as I no longer work. I did work 27 yrs. of night shift (11p-7am). Even then though I usually had one night a week when I could not sleep at all. My biggest concern now is that I have periods where I cannot sleep for 24-72 hrs and am still not sleepy. Well, maybe at the end of that 72hr period finally. This can’t be good for my brain and concerns me that it might have some on my life expectancy. Trying melantonin, sleeping pills or Dr. prescribed sleep hygiene doesn’t work at all. don’t know where to turn !!

  8. @ Patricia

    How long have you been trying to adjust to a “normal” sleep pattern? If you want to adjust your circadian rhythm to a more normal one, you have to do it slow, since you spent so many years not sleeping at night. A suggestion is make sure your bedroom is really dark at night when you want to sleep, and get yourself (especially your eyes) exposed to lots of sunlight during the day. I certainly do not mean staring at the sun though. Using moderate amounts of melatonin at night may be helpful too.

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