My story with Delayed Sleep Phase Syndrome

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By Peter Mansbach, PhD

Note: Circadian Rhythm Sleep-Wake Disorders is one of particular interest to us as parents and caregivers with the age of our readers ranging from of 35-60. We have asked Peter Mansbach, PhD, and President of the Circadian Sleep Disorders Network, about his personal experience with Circadian Rhythm Sleep Disorder.

“One of the observations I hear from many of our members is that when they were young, they could manage an early schedule, though they were tired a lot of the time. As they got older, they could no longer manage. That happened to me also, in my late thirties. It’s as though our body clocks became more rigid and unforgiving as we age,”’ Dr. Mansbach informed us. Here’s his story.

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 awakened 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. I just forced myself to do so. And managed to do very well academically. Just my luck; in junior year I had to take the earliest class of my college career. I had an hour between classes, and 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—10am. Not sure how I found the nerve even to ask for that, but I did. But subsequent jobs had rigid early start times, at 8:30am. 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 Delayed Sleep Phase Syndrome (DSPS). They hadn’t even published their seminal paper [1] yet, but they immediately recognized the syndrome in me. They also were exploring 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 that this wouldn’t be stable and 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 and understanding: 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 1pm. 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 1pm start time became 2pm and often I was late even for that. But I did good work and my managers put up with my lateness. 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 five 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 attribute 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 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 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 used 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’m now retired from paying work, but I work pretty much full time as a volunteer for a nonprofit. These days I normally go to bed around 3am 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 take a short nap (20-30 minutes) during the afternoon. I’m rarely 100% alert. There’s usually a slight tiredness, but it’s not a problem and isn’t anything close to how dragged out, foggy and dysfunctional that 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’s 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 where I was unfamiliar, 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 worsened 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. Friends and families of persons with these disorders did not believe these were real. 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 is as 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.

 


 

The far ranging implications of sleep loss

Siobhan Kuhar, MD, PhD, DABSM Medical Director, Albany Regional Pediatric & Adult Sleep Center

Most of us don’t get the amount of sleep we need. We now know that lack of sleep in the short term affects our judgment, mood, ability to learn and retain new information, and increases the risk of accidents and injuries due to poor decision-making or inattention. Chronic sleep loss may lead to a wide variety of health problems including obesity, diabetes, heart disease, stroke, and a shortened life expectancy. These health concerns begin with sleep loss in childhood and accumulate over the course of a lifetime of inadequate sleep.

Sleep loss in children and adolescents
It is estimated that 30-40% of children suffer from sleep disorders of inadequate amount or quality of sleep. Sleep is important for growth and development as growth hormone is secreted primarily during sleep and synaptic pruning, a requirement for proper brain development, requires sleep. Sleep affects every aspect of a child’s development, especially higher cognitive functions of learning and memory. Among health outcomes of inadequate sleep is an increase in accidental injuries, as well as deleterious effects on the cardiovascular, immune and various metabolic systems including glucose metabolism and endocrine function. This places the sleep deprived child at greater risk for becoming obese and developing diabetes and hypertension. Inadequate sleep in school-aged children can result in tiredness, difficulties focusing attention, irritability and easy frustration, with difficulty controlling impulses and emotions. These symptoms may resemble attention deficit hyperactivity disorder in some children. Unlike adults, who generally manifest their lack of sleep with appearing drowsy, children who are sleep deprived can appear drowsy but often become more hyperactive. Sleep deprivation can result from an inadequate amount of sleep or poor sleep quality due to sleep disruption. Sleep disorders typically associated with adulthood can be seen in children. They can range from poor sleep hygiene and habits around sleep to insomnia, circadian rhythm disorders, restless leg syndrome, narcolepsy or sleep apnea. It is estimated that 1-4% of children have sleep apnea, which can be manifested as snoring or pauses in breathing. The 2014 National Sleep Foundation “Sleep in America” Poll found that most children get 1-2 hours less sleep each night than is recommended for their age and suggested that setting boundaries around electronics use, enforcing rules and setting a good example can be of significant benefit to children. The recommendations for hours of sleep change as children age but, in general, the National Sleep Foundation recommends that children 6-10 year olds get 10-11 hours of sleep and adolescent children get 8.5-9.5 hours of sleep.

Sleep loss in adults
Sleep loss in adults generally refers to sleep duration shorter than the average 7 to 8 hours a night and it has increased greatly over the past 20 years. This growth in sleep loss is due primarily to societal changes, including longer work hours, shift work, and greater access to television and the Internet. Research studies over the past decade have repeatedly shown that sleep loss increases the risk of motor vehicle accidents and may have wide-ranging effects on the cardiovascular, endocrine, immunologic and nervous systems. Many of these studies have found that the greater the sleep loss, the greater the adverse effect.
For example:
• Sleep deprivation of 24 hours was found to be equivalent to a blood alcohol level of 0.1% in terms of simulated driving performance.
• If a person sleeps less than 7 hours a night, there is a dose-response relationship between sleep loss and obesity.
• Adults who reported 5 hours of sleep or less were 2.5 times more likely to have diabetes, compared with those who slept 7 to 8 hours a night.
• Sleep loss in people who have existing hypertension has been shown to cause elevated blood pressure throughout the following day. More recently, researchers at the University of Rochester Medical Center showed that the fluid that surrounds our brain, cerebrospinal fluid, flows through the brain and clears out toxins through a series of channels that expand only during sleep. This washing of the brain was shown to remove beta-amyloid, a protein that accumulates in the brains of people with Alzheimer’s disease. Brain levels of beta-amyloid were shown to decrease during sleep, suggesting that inadequate sleep may contribute to developing Alzheimer’s disease. Even a single sleepless night can cause a child or adult to be irritable and moody the next day. But beyond how we feel, we know that sleep loss can cause significant impairment in how our brains function and the health of both our minds and bodies. Our habits around sleep and our beliefs in the importance of sleep begin in childhood and shape our adult life. Make the quantity and quality of sleep a priority, a starting point for each day.

Sleep disorder categories
The American Academy of Sleep Medicine describes various sleep disorder categories: Insomnias: Involves the inability to fall asleep or stay asleep.
Hypersomnias: A group of sleep disorders that cause a person to be excessively sleepy. People with a hypersomnia may fall asleep at times that are inconvenient or even dangerous, such as at work or while driving.
Sleep Related Breathing Disorders: Involve difficulty breathing during sleep. Obstructive sleep apnea is the most common disorder of this type; however, there are variations of sleep apnea. Circadian Rhythm Sleep-Wake Disorders: Conditions in which the sleep times are out of alignment. A patient with one of these disorders does not follow the normal sleep times at night.
Parasomnias:
A group of sleep disorders that involve unwanted events or experiences that occur while you are falling asleep, sleeping or waking up. Sleep Movement Disorders: A classification of sleep disorders that includes conditions that cause movement during or prior to sleep. These disorders can make it difficult to fall asleep or stay asleep, or to get restful sleep.

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