Lifelong Insomnia? Don’t Give Up on It Yet

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Have you had insomnia all your life? Have your parents said you were a poor sleeper even as a baby?

Trouble sleeping that starts early in life is called idiopathic insomnia. If insomnia is still the black box of sleep disorders, then idiopathic insomnia is the little black box inside the black box.

Here’s what is known about the disorder and options for management.

What Is Idiopathic Insomnia?

Idiopathic insomnia begins in childhood, sometimes at or soon after birth. Trouble falling or staying asleep or reduced sleep duration is pretty much a nightly affair regardless of situational changes. The disorder is uncommon, affecting less than 1% of the population.

There is no identifiable cause. The presumption is that idiopathic insomnia is driven mainly by biological factors, and at least some of them are probably inherited. Abnormalities in the circadian system or the homeostatic process may be involved and/or there may be a problem in the circuitry controlling sleep and waking in the brain.

A Chronic Sleep Disorder, but How Well Defined?

Idiopathic insomnia is a chronic sleep disorder with familiar insomnia symptoms:

  • Trouble falling or staying asleep, or sleeping long enough, for more than 3 months despite adequate sleep opportunity
  • Daytime distress and impairment, including reduced stamina, low mood, and trouble thinking and learning

Research on the defining features of idiopathic insomnia is mixed. On one hand are a few studies showing significant differences between people with idiopathic insomnia (IdI) and those with psychophysiological insomnia (PI), the garden-variety insomnia that typically develops later in adolescence or adulthood. PI is often triggered by a stressful event; situational factors do not figure in IdI. PI is said to persist mainly due to psychological and behavioral factors that develop in response to poor sleep: conditioned arousal in bed, poor sleep hygiene (going to bed early to catch up on sleep, for example), and anxiety about sleep. Psychological factors are less typical in IdI.

On the other hand is research showing no major differences between PI and IdI when assessed by polysomnography (the overnight test in the sleep lab) or by self-report of psychological symptoms. Research suggests that arousal levels are higher among people with IdI than in people with other kinds of insomnia, though, leading some sleep experts to speculate that IdI is simply a more severe manifestation of PI.

What Can Be Done?

Without scientific certainty about the causes of IdI or whether the disorder is distinct from other kinds of insomnia, IdI is best treated on a case-by-case basis by a sleep specialist. Following are options for treatment.

Especially if a person with IdI has misconceptions and/or anxiety about sleep,

  • Cognitive behavioral therapy for insomnia (CBT-I) may help. CBT-I typically consists of two behavioral components—stimulus control therapy and sleep restriction therapy—and a cognitive component designed to decrease psychological barriers to sleep. Sometimes just changing your attitude about sleep can bring about demonstrable sleep improvements.
  • Acceptance and commitment therapy (ACT) may help. ACT focuses on building mindfulness skills so that, rather than trying to suppress, manage, and control emotional experiences, people develop psychological flexibility and learn to behave in ways that reflect their values and increase well-being. This approach, too, can change the way you feel about sleep and in the process improve your sleep.

If round-the-clock hyperarousal is driving IdI, then therapies designed to decrease arousal may help.

  • Regular, moderate-to-vigorous exercise—activities such as aerobics, calisthenics, biking, running, and weight-lifting—has been shown in recent studies to increase total sleep time and decrease levels of cortisol (a stress hormone).
  • Yoga, too, has been shown to decrease feelings of arousal and promote stress tolerance.

Medication for Idiopathic Insomnia

The issue of sleeping pills for chronic insomnia is increasingly fraught. Many drugs approved for the treatment of insomnia, taken nightly over time, may degrade sleep quality and result in alarming side effects, especially in older adults.

That said, while the medication prescribed for IDI is usually a benzodiazepine or a Z-drug such as zolpidem or eszopiclone, a second pharmacological approach, according to a paper by Michael Perlis and Philip Gehrman, involves use of a melatonin agonist such as ramelteon (Rozerem). No studies of the effects of this sleeping pill on the sleep of adults with IdI have been conducted. But in two studies of children aged 6 to 12 years with chronic idiopathic childhood sleep-onset insomnia, melatonin put them to sleep significantly sooner—by 1 hour.

If you’re contemplating managing lifelong insomnia with drugs, get some professional advice. This is one place where you really need the help of a specialist knowledgeable in the medical treatment of chronic insomnia.

At what age did your trouble sleeping start? What kinds of treatments—if any—have helped?