Circadian Sleep Disorders Network - Advocating for people with misaligned body clocks
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My Story With DSPS

by Peter Mansbach

Pre-diagnosis

As a child I always woke up early, often before 6am. But by high school I wanted to sleep late. I was often scolded at night for not going to bed at bedtime, but that's when I was doing my best homework. In college I was having real trouble getting up for class. My roommate junior year threatened to go to the authorities because I kept snoozing my alarm, seven, eight, nine times, so he was being repeatedly waked up over the better part of an hour. I was unaware that I was even doing that.

But who knew about sleep disorders? A lot of people complained about hating to get up in the morning. So I just forced myself to do so. And managed to do very well academically.

Just my luck, junior year I had to take the earliest class of my college career. I had an hour between classes, and I was so tired that I would lie down in the corridor outside the next classroom and nap. If you're tired enough, it doesn't matter how weird you look. I also started having migraines after that class, but didn't really make the connection with the early rise time. In grad school I was rarely able to make the required early morning seminars. Fortunately, my graded classes were later in the day.

In my first year-round job I was able to negotiate a later start time, 10:00 am. Not sure how I found the nerve even to ask for that, but I did. But subsequent jobs had rigid early start times, at 8:30 am. I was always tired, but I managed. Who knew about sleep disorders? It never occurred to me that I had a disorder.

After a number of years of struggling I got sick, and missed several weeks of work. By the time I went back, I just couldn't get up so early anymore. I burned through all the accumulated leave I had, an hour or two every day. My manager was increasingly impatient with me.

Diagnosis: A Lucky Break

I finally saw a neurologist. He referred me to a sleep clinic for an overnight sleep study. But sleep clinics were new, and rare. I had to travel to New York City, to Montefiore Hospital, to be tested. What a stroke of luck! Unbeknownst to me, this was where a team of researchers was elucidating the first descriptions of DSPS (Delayed Sleep Phase Syndrome). They hadn't even published their seminal paper [1] yet, but they immediately recognized the syndrome in me.

They were also exploring phase-delay chronotherapy, resetting the body clock by moving one's sleep time later every few days, around the clock, until arriving at the desired sleep schedule. Then it would be necessary to stick to that schedule religiously. Something in me said this wouldn't be stable, that I would not be able to stick to that schedule and never get to bed late even in an emergency. In any case, I no longer had enough saved vacation time to do it. Another stroke of luck: we now believe that this type of chronotherapy can sometimes lead to Non-24-Hour Sleep-Wake Disorder, which is far more difficult to live with.

Armed with the knowledge that I had DSPS, and the letter from the doctor, I went back to my manager. I was able to negotiate a much later start time, by accepting part time work. Initially I started work at 1:00 pm. After several years my boss's boss left, and his replacement would not accept the schedule I had negotiated. I lost my physics job, and my career in research, but found another as a contractor in computer programming. Over a number of years and several different contracts the 1:00 pm start time became 2:00 pm, and often I was late even for that. But I did good work, and my managers put up with my lateness.

I became happy!

I had been slightly depressed most of my adult life, without even realizing it. Twice I'd had serious depressive episodes, each starting in winter and lasting about 5 months. But no more. I've felt much more positive generally, and have not had serious depressions, since living on my body's natural schedule. I attibute the former depression to the struggle, day in and day out, to get up in time for work, to peer through the constant fog between me and the world, to deal with tiredness all the time.

Attempts at Treatment

I tried shifting my schedule earlier by using a lightbox in the morning. Not as soon as I got up, because that triggered migraines, but about an hour later. While I was able to get to bed somewhat earlier, and to get up earlier by using an alarm, I felt like I was floating in a dream world all day. Nothing seemed real, and memories were vague and distant. I did not want to live this way again.

I do still use the lightbox, but only on what is now my natural schedule. About an hour after I get up, I read the newspaper in front of a lightbox, exposing my eyes to 10,000 lux for half an hour to an hour. It seems to keep my sleep times more regular, from day to day, and my sleep more consolidated.

I also tried melatonin at bedtime. Large doses (one doctor had me take 6 mg) triggered migraines. I did use 0.1 mg every night for a long time, but wondered if it contributed to my occasional migraines. When I went off it, I didn't notice any difference in my sleep. So I no longer take it.

Current Schedule

I worked for many years as a contractor programming computers, with hours from 2:00 to 8:00 pm, although I often arrived late and stayed late. I was never hired as an employee, always as a contractor, since HR departments seemed to frown on my non-standard schedule. But I was able to be a productive member of society, and I got paid reasonably well.

I'm now retired from paying work, but I work pretty much full time as a volunteer for a non-profit. These days I normally go to bed around 3:00 am, and sleep till noon. I still feel tired for the first hour or two after I wake up, and holding a conversation then is difficult. But that improves as the day goes on. I often feel a spell of tiredness later, and I take a short nap (20 - 30 minutes) during the afternoon. I'm rarely 100% alert - there's usually still a slight tiredness - but it's not a problem, and isn't anything close to how dragged out and foggy and dysfunctional I feel if I go against my body's preferred sleep schedule.

On my natural schedule I can function well, be happy, and stay healthy.

Epilog I: On Getting Up Early

I've been asked many times to get up early for a doctor's appointment, repairman visit, relative's kid's baseball game, whatever. "Can't you just set an alarm and get up, just this once?" (Just this once ... right. You wouldn't believe how often this is requested.) Well, yes I could — but don't try to hold an intelligent conversation with me that early, because I can't even process what you say, let alone formulate an answer — and that's if I don't crash the car on the way there. Once, when I did try to get up really early for an urgent business meeting, in an area I was unfamiliar with, I drove onto the highway and found myself facing two lanes of cars coming at me at 60 mph: I had accidentally driven onto an off ramp. Not recommended.

The other problem with getting up early on one day is that the tiredness and memory problems seem to carry over for several more days. It's really disruptive to my work. That wasn't true when I was young, but it has become worse and worse as I've gotten older, as have all the effects of too little sleep.

Epilog II: Starting Circadian Sleep Disorders Network

Most people have not heard of DSPS or Non-24. Our friends and families did not believe these were real disorders. They said we were just lazy or undisciplined. General practitioners were not aware of them. If we mentioned finding them on the internet, they dismissed us, and just fed us sleeping pills. Even sleep specialists did not recognize the disorders, or they considered DSPS to be a disorder of teens, and non-24 a disorder of blind people. Patients could not get accommodations at work or school.

We needed an organization to raise awareness. Two years ago we formed Circadian Sleep Disorders Network (www.circadiansleepdisorders.org). Our mission:

Circadian Sleep Disorders Network is an independent nonprofit organization dedicated to improving the lives of people with chronic circadian rhythm disorders.

We aim to increase awareness within the medical community and among the general public, to provide emotional support and practical ideas for people living with these disorders, to inform patients and health care providers about treatment options, to encourage research into circadian rhythms, and to advocate for accommodations in education and employment for people with circadian rhythm sleep disorders.



[1] Weitzman ED, Czeisler CA, Coleman RM, et al. "Delayed sleep phase syndrome. A chronobiological disorder with sleep-onset insomnia". Arch. Gen. Psychiatry 38 (7): 737-46 (1981). PMID 7247637

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Last modified Aug 9, 2016
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