THE Unknown Sleep Disorder

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There is a sleep disorder that few doctors are aware of that affects three in every 2,000 adults. As a result, it often goes untreated, is treated improperly or is misdiagnosed as primary insomnia or a psychiatric condition. It is called Delayed Sleep Phase Syndrome. Those who suffer from DSPS report that they cannot sleep until early morning, but fall asleep at about the same time every night. In simple terms, DSPS is a misalignment between the patient's sleep pattern and the sleep pattern that is desired or regarded as the social norm.

Its misdiagnosis has resulted in thousands of people being labeled as lazy. By the time many sufferers seek medical help, they have already tried and failed countless times to cure themselves with relaxation techniques, alcohol, sleeping pills, hypnosis and a variety of other home remedies as well. They may toss and turn for hours in bed or sometimes not sleep at all before reporting to school or work. Some also report that the use of sedatives to induce sleep often makes them feel tired or relaxed but fails to induce sleep. It is a condition that often begins to surface during adolescence but many sufferers never "grow out of it."

It wasn't until 1981 that DSPS was first formally described by Dr. Elliot D. Weitzman and others at the Montefiore Medical Center. Its formal definition is a circadian rhythm sleep disorder, a chronic disorder of the timing of sleep, peak period of alertness, the core body temperature rhythm, hormonal and other daily rhythms, compared to the normal population and relative to societal requirements. People with DSPS generally fall asleep some hours after midnight and have difficulty waking up at a "normal" time in the morning.

An obvious social stigma resulting from a lack of information on this disorder is that sufferers are often labeled as "lazy." Although some people might indeed simply be lazy, DSPS sufferers are often frustrated that they cannot cope with a normal daily routine. In order to live normal lives, some adapt their lives to a routine that avoids common business hours (9 to 5) as much as possible. For them, this disorder is a disability that they often secretly cope with for the rest of their lives.

There is a difference between chronic insomnia and Delayed Sleep Phase Syndrome. Those who suffer from DSPS have a normal ability to sleep during the morning or even the afternoon as well. In contrast, those with chronic insomnia do not find it any easier to sleep during the morning hours than at night. Those with DSPS also fall asleep more or less at the same time every night and can sleep well and regularly when they can follow their own sleep schedule.

People with normal circadian systems can generally fall asleep quickly if they had little or no sleep the night before. However, people with DSPS are unable to fall asleep before their usual sleep time even if they have been sleep deprived. They are often called extreme night owls, usually not getting sleepy until 2 am, and feel most alert and function the best and are most creative in the evening and at night. "Sleeping in" on weekends or taking long naps during the day can, in some cases, provide a certain amount of relief to sufferers but can also perpetuate the late sleep phase.

DSPS is not uncommon among teens. At least one study has indicated that DSPS among adolescents is as high as 7% and more prevalent among boys while the gender distribution is about 50-50 among adult men and women.

But, before you do your own self-diagnosis, there are certain diagnostic criteria for Delayed Sleep Phase Syndrome. First of all, there must be evidence of a chronic or recurrent complaint of the inability to fall asleep at a desired conventional clock time together with the inability to awaken at a desired and socially acceptable time. Secondly, when a patient is not required to maintain a strict schedule, he will exhibit normal sleep quality and sleep duration for their age and will have little or no reported difficulty in maintaining that sleep once sleep has begun.

Patients who suffer will also have a relatively severe to absolute inability to advance the sleep phase to earlier hours by enforcing conventional sleep and wake times. Sleep logs of at least two weeks may be required to document sleeping patterns and patients may even experience occasional nights where sleep is "skipped" for an entire day and night, followed by a sleep period of up to 18 hours. Finally, the symptoms must not meet the criteria for any other sleep disorder causing inability to initiate sleep or excessive sleepiness.

The cause of DSPS is not fully understood. However, there is growing evidence that DSPS is associated with the hPer3 (human period 3) gene and tends to run in families. Also, there have been several documented cases of DSPS developing after traumatic head injury.

Once DSPS is recognized and diagnosed by a doctor, treatment for the disorder is different from treatment of insomnia and recognizes the patient's ability to sleep well on their own schedules while addressing the timing problem. However, successful treatment is only partial. Light therapy, chronotherapy and drugs such as melatonin are often tried with limited success. Vitamin B12 has even been suggested as a possible remedy for DSPS. However, a 2007 review for the American Academy of Sleep Medicine concluded that no benefit was seen from this treatment.

DSPS is therefore extremely difficult to treat. One study of 61 DSPS patients over a one year period who had an average sleep onset of about 3 am and waking time of about 11:30 am, showed positive results with very large daily doses of melatonin (5mg). But the follow-up study showed that over 90% of them had relapsed to their pretreatment sleep patterns within the year and over 28% of them relapsed within a week.

So, what can DSPS patients do to live a normal life? Some have found that working evening or night shifts or working at home is less of a social obstacle for them. Some DSPS sufferers nap in the morning or afternoon to supplement their night time sleep. They often seek employment in "DSPS-friendly" careers such as security work, hotels or bars, nursing, taxi or truck driving, freelance writing, call center work or other occupations that fit in with their sleep patterns.

Rehabilitation basically includes acceptance of the condition. But it is imperative that physicians recognize this medical condition. Furthermore, in the United States, the Americans with Disabilities Act requires that employers accommodate employees with sleeping disorders by providing appropriate accommodations. In the case of DSPS, this could mean that employers accommodate later working hours for jobs normally performed on a "9 to 5" work schedule.

A lack of public awareness adds to the frustration of those who suffer from DSPS. They are often stereotyped as undisciplined or lazy. Parents may be chastised for not providing their children proper sleep patterns and schools and workplaces rarely tolerate chronically late, absent, or sleepy students or workers. Misdiagnosis of circadian rhythm sleep disorders as psychiatric conditions also causes considerable distress of patients and their families and can even lead to some patients being inappropriately prescribed psychoactive drugs. But for many sufferers of this disorder, just knowing that it exists is a life-changing breakthrough.

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