Lifelong Insomnia? Don’t Give Up on It Yet

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.

Lifelong insomnia can be treated by sleep specialist or therapistHave 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?

When 7-Hour Nights Aren’t Good Enough

To many insomnia sufferers, the prospect of sleeping 7 hours a night sounds great. Insomniacs who write to me with news that they’ve achieved this feat after undergoing some type of insomnia treatment are thrilled.

Other people are not so thrilled about 7-hour nights. No matter how long they sleep, they wake up feeling unrested. Insufficiently refreshing sleep is the main symptom of people diagnosed with nonrestorative sleep.

Nonrestorative sleep may or may not be a form of insomniaTo many insomnia sufferers, the prospect of sleeping 7 hours a night sounds great. Insomniacs who write to me with news that they’ve achieved this feat after undergoing some type of insomnia treatment are thrilled.

Other people are not so thrilled about 7-hour nights. No matter how long they sleep, they wake up feeling unrested. Insufficiently refreshing sleep is the main symptom of people diagnosed with nonrestorative sleep.

A Closer Look at What Nonrestorative Sleep (NRS) Feels Like

Jeremy wrote to me recently complaining of insomnia. But the way he described his problem was different from the insomnia stories I usually hear:

I do not struggle with sleep onset at all or awakening from sleep. But the ‘sleep’ I do receive is of such low quality it feels like I did not sleep at all. . . . I am often unconscious for 6 to 7 hours. But it feels like I receive practically nothing (the most similar feeling I have ever experienced is being extremely hung over from excessive alcohol consumption).

To “receive practically nothing” after a full night’s sleep makes Jeremy’s situation sound rather desperate. Normal sleep affords many benefits: it allows for the conservation of energy, enables the growth and repair of body tissue, shores up important memories and prunes the unimportant ones, enables the processing of emotion, improves our ability to perform tasks and procedures. Importantly, a night of sound sleep primes us to meet the demands of the day ahead. If Jeremy’s waking up feeling unrested, then even though he’s sleeping, he’s really missing out.

A Subjective Diagnosis

The causes of NRS are still unknown and no objective tests for it exist. Identifying its biological markers is a project only just begun. So the diagnosis of NRS is subjective, based on symptoms alone.

In 2013 Canadian investigators published an NRS questionnaire after identifying 4 key features of the disorder. Compared with healthy sleepers, people with NRS tend to:

  1. Experience poor quality sleep and wake up feeling unrested
  2. Have more aches, pains, and medical problems, including symptoms of panic
  3. Experience impaired daytime functioning (e.g., experience low energy and alertness, and have trouble with memory and concentration)
  4. More often feel depressed and/or irritable during the day

Is It Insomnia or Not?

Sleep experts have tossed this question around for years. The daytime symptoms of NRS are similar to those associated with insomnia (although the impairment caused by NRS may actually be more severe). Also, overnight sleep studies of people with NRS often look the same as those of normal sleepers, suggesting that NRS might have something in common with paradoxical insomnia, a diagnosis often given to people whose sleep studies look normal but who feel like they’re only getting an hour or two of sleep a night.

But the differences between NRS and insomnia may prove to be more important and argue for NRS to be considered a separate sleep disorder. Unlike people with insomnia, who report trouble falling asleep or staying asleep, many people with NRS experience neither of these nighttime problems.

Funded by a grant from the National Institute of Mental Health, a team of researchers looked for differences between the symptoms of insomniacs and people with NRS in large sample of the general population. They noted the following:

  • The prevalence of insomnia increased with age; the prevalence of NRS decreased with age.
  • Insomnia was significantly associated with cardiovascular disease; NRS was not associated with CVD but was significantly associated with different medical problems, including emphysema, chronic bronchitis, habitual snoring, sleep apnea, and restless legs syndrome.
  • After adjusting for confounding factors, levels of C-reactive protein, a marker of inflammation, were significantly high in people with NRS only but not in people with insomnia only.

The elevated levels of C-reactive protein might be clue about the causes of NRS. “Indeed,” the authors write, “NRS is a core symptom of chronic fatigue syndrome and some forms of major depression, both of which have been shown to be associated with increased . . . inflammatory markers.” For anything more definitive, we’ll have to wait and see.

How Is NRS Treated?

The medical literature is sadly lacking here. If you think you might have NRS, consult a sleep specialist and see what he or she recommends. NRS often occurs in conjunction with another medical problem, such as fibromyalgia or sleep apnea, or a psychiatric problem such as depression. Treatment of that problem may improve sleep quality and help to resolve the issue with NRS.

Some research has also shown that the sleep of people with NRS is characterized by increased alpha wave activity, a phenomenon associated with hypervigilance. If this is true, then vigorous daily exercise may help.

Straighten Up the Room for a Better Night’s Sleep

My husband is a neatnik and champion sleeper, and I’m messy and prone to insomnia. Could there be a relationship between household clutter and sleep quality?

Yes, says Pamela Thacher, a psychology professor at St. Lawrence University in Canton, New York. The results of a survey Thacher and student Alexis Reinheimer conducted recently suggest that hoarders are more likely to have sleep problems than people living with less clutter, and that getting rid of clutter might be conducive to better sleep.

sleep better in an uncluttered roomMy husband’s a real neatnik in his office at home, purging his files monthly, and I’m especially aware of this on New Year’s Day. Not only are the holiday cards long gone from his desk. During his December vacation he whittles his to-do pile down to nothing.

My files, in contrast, are bulging from years of neglect, and this year’s holiday cards are still on my desk. I can’t imagine whittling my piles down to nothing. The neatest my office gets is when there are no piles of stuff on the floor.

My husband is also a champion sleeper—whereas I’m prone to insomnia. But could there be a relationship between household clutter and sleep quality?

Yes, says Pamela Thacher, a psychology professor at St. Lawrence University in Canton, New York. The results of a survey Thacher and student Alexis Reinheimer conducted recently suggest that hoarders are more likely to have sleep problems than people living with less clutter, and that getting rid of clutter might be conducive to better sleep.

More About the Survey*

People with hoarding disorder tend to have difficulty using rooms for their intended purpose, and Thacher and Reinheimer wondered if hoarders with cluttered bedrooms might experience more sleep problems than people with neater rooms.

To conduct their survey, they advertised online for people interested in hoarding, sleep, or clutter and recruited 281 participants. Based on their responses to survey questions, 83 were deemed at risk for hoarding disorder. The remaining respondents served as the controls.

What They Found Out

Hoarders reported significantly lower sleep quality and more sleep-related daytime disturbances than controls. Contrary to expectation, though, it was hoarders’ living rooms (rather than their bedrooms) that were the most likely to be cluttered and unusable. But their kitchens and bedrooms were also significantly more cluttered than those in the control group.

“It seemed like even people without hoarding disorder had what we call a dose response—meaning that the more clutter you had, the more likely you were to have a sleep disorder,” Thacher said, quoted online in U.S. News & World Report.

Clutter, Sleep, and Me

This makes perfect sense to me. I doubt I’d qualify as a hoarder, but my office is usually disorganized—and the amount of clutter varies depending on how busy I am and how stressed out I feel. The times when the office gets practically impassible are also the times when my insomnia is at its worst. Only when the stress has passed do I start sleeping better and take a stab at tidying up the office and the rest of the house.

I have no trouble thinking that the state of my room is related to the state of my sleep, but the idea that cleaning up my room would help me sleep is a bit of a stretch. Thacher is moving ahead with her research, though, conducting a study on non-hoarders with sleep problems to see if getting rid of clutter in their homes improves their sleep.

“A clean bedroom might set your mind at rest,” she said.

* Read a summary of Thacher’s research on hoarding and sleep on page 329 of the 2015 abstract supplement of the journal Sleep.

If you’ve noticed a relationship between sleep and clutter in your home, how would you describe it?

Women More Prone to Insomnia Than Men, Part I

For every two men who have insomnia, three women do. Why are women more susceptible than men to this common sleep disorder?

It has partly to do with women’s genetic make-up, researchers state in a paper published this month in the journal Sleep. A team of geneticists conducted a longitudinal analysis of data from a large twin study and found that the estimated heritability of insomnia was 38 percent for males and 59 percent for females.

Beyond this, the factors that make women more vulnerable to insomnia are not so clear. One line of thinking is that women’s increased risk may have to do with hormonal changes associated with the reproductive system. Here are some recent findings about women’s susceptibility to insomnia during the reproductive years.

Insomnia is more common in women than menFor every two men who have insomnia, three women do. Why are women more susceptible than men to this common sleep disorder?

It has partly to do with women’s genetic make-up, researchers claim in a paper published this month in the journal Sleep. A team of geneticists conducted a longitudinal analysis of data from a large twin study and found that the estimated heritability of insomnia was 38 percent for males and 59 percent for females.

Beyond this, the factors that make women more vulnerable to insomnia are not so clear. One line of thinking is that women’s increased risk may have to do with hormonal changes associated with the reproductive system. Here are some recent findings about women’s susceptibility to insomnia during the reproductive years.

It Starts Early

The pattern of insomnia showing up in more females than males starts to emerge in high school-age teens, according to epidemiological research. This could be partly attributable to cyclic changes that occur with menstruation and menstrual cycle disorders. The hormones that regulate reproductive functions also affect sleep.

Women report the greatest number of premenstrual symptoms (e.g., headaches, bloating, and mood swings) in the days leading up to menstruation, when estrogen and progesterone levels are falling.

In 3 to 8 percent of women, these premenstrual symptoms are severe, say the authors of a review paper on sleep and women’s health. Women with premenstrual syndrome (PMS) or premenstrual dysphoric disorder (PMDD) typically report disturbed sleep in the week leading up to, and the first few days of, menstruation: insomnia, frequent awakenings, and non-restorative sleep. Women with PMS and PMDD also report sleepiness, fatigue, mood swings, and trouble concentrating. The hormonal fluctuations behind these symptoms, which resolve with the onset of menstruation or soon thereafter, may be a factor in women’s increased vulnerability to insomnia.

Tests have not turned up much evidence of these subjective complaints. (So there’s a need for more fine-grained tests.) But in one study, older women of reproductive age were found to sleep less efficiently in the week leading up to menstruation. Researchers also found that women who experienced a steeper rise in progesterone in the middle of the menstrual cycle tended to experience more wake time and sleep fragmentation in the days approaching menstruation.

Insomnia During Pregnancy

Changes that occur during pregnancy also cause an increase in sleep problems. Hormonal fluctuations are involved, as well as anatomic and physiologic changes that give rise to symptoms such as backache, breast tenderness, fetal movement, and urinary frequency, which may interfere with sleep. Pregnant women who experience more wake-ups and poor sleep quality typically report that the sleep problems worsen as their pregnancies progress.

By the third trimester, women are waking up 3 to 5 times a night. The prevalence of insomnia is about 21 percent. (Compare this to the 10 percent of the general population said to have insomnia.) Sleep studies have shown that pregnant women get less sleep in the third trimester and that their sleep is lighter and more fragmented.

Persistent Sleep Problems

Disrupted sleep is common among women (and men) with infants. But there’s not much information about if and when the sleep problems connected with pregnancy and childbirth resolve.

Norwegian researchers recently looked into these questions. They analyzed data from a longitudinal study of 1,480 healthy women to ascertain the prevalence of insomnia during 3 time periods. Using well-validated scales, they found the prevalence of insomnia to be quite high both during and after pregnancy:

  1. week 32 of pregnancy—60 percent reporting insomnia
  2. week 8 postpartum—60 percent reporting insomnia
  3. year 2 postpartum—41 percent reporting insomnia

A notable aspect of this study is not just the high percentage of women reporting insomnia but also how persistent the insomnia symptoms were. By year 2 postpartum, the prevalence of insomnia was still quite high compared with the prevalence of insomnia in the general population (and concurrent maternal depression could not explain this persistence). The researchers suggested that pregnancy-related sleep problems may become chronic, and that this might contribute to explaining why insomnia is more common in middle-aged and older women than in men in the same age groups.

We’ll explore the increased risk of insomnia in middle-aged and older women in Part II sometime next month.

 

Paradoxical Insomnia: What It Is & How It’s Treated

Do you normally get just an hour or two of sleep? Are there nights when you don’t sleep at all?

You may have paradoxical insomnia. Despite its prevalence, the whys and wherefores remain largely unknown. But researchers have made a little headway in recent years, and here’s what they say now.

people with paradoxical insomnia report 1-2 hours of sleep but a sleep study isn't in agreementDo you normally get just an hour or two of sleep? Are there nights when you don’t sleep at all?

You may have paradoxical insomnia. An overnight sleep study would confirm the diagnosis. Despite your perception of getting very little sleep, your electroencephalogram (EEG)—the graphic record of your brain waves produced during an overnight sleep study—would indicate that you were actually sleeping a 6.5- to 8-hour night.

This sleep disorder seems to be fairly common. About 9 to 40 percent of the people diagnosed with insomnia are estimated to have it. Despite its prevalence, the whys and wherefores remain largely unknown. But researchers have made a little headway in recent years, and here’s what they say now.

Is There Really Anything Wrong?

Formerly called pseudoinsomnia and more recently sleep state misperception, the sleep of people with paradoxical insomnia looks similar to normal sleep in a conventional sleep study. In fact, the EEG of a person with paradoxical insomnia can look identical to the EEG of a normal sleeper. Doctors used to tell their patients that nothing was wrong.

But people with paradoxical insomnia do have grounds for complaint, and scientists are now a little closer to understanding why. In a 1997 study, Michael Bonnet and Donna Arand reported that compared with normal sleepers, people with paradoxical insomnia (1) were more confused, tense, depressed, and angry, and (2) had a significantly increased 24-hour metabolic rate. This is suggestive of hyperarousal, a characteristic of people with insomnia.

Subjective vs. Objective Insomnia

Paradoxical insomnia, also called subjective insomnia, differs from objective insomnia—the type that’s more familiar. Compared with paradoxical insomniacs, objective insomniacs

  • sleep significantly fewer hours, as recorded on the EEG
  • tend to be less inaccurate at estimating total sleep time
  • may have psychological and physiological symptoms that are more severe.

In a 2002 study, Andrew Krystal and colleagues presented an in-depth analysis of brain wave patterns that shed light on more differences. Compared with objective insomniacs, paradoxical insomniacs

  • had less delta wave activity during sleep (delta waves are the predominant waveform in deep sleep, the restorative stuff). The lower the delta activity, the greater the discrepancy between the total sleep time recorded on the EEG and the sleep time estimated by the patient.
  • experienced more alpha, beta, and sigma wave activity during sleep—brain waves commonly associated with arousal, perception, and thinking. This suggests that people with paradoxical insomnia are prone to perceiving and possibly even processing information when they sleep.

Overall, then, the sleep of people with paradoxical insomnia tends to be light and characterized by hypervigilance. Scientists are not sure if this sleep disorder is simply a way station en route to objective insomnia or a completely different kettle of fish.

Treatment of Paradoxical Insomnia

There is no standard treatment for people with paradoxical insomnia. Drug-free behavioral therapies such as sleep restriction and stimulus control may not help.

If physiological hyperarousal is the main problem for insomniacs in this group, one way to address it would be through physical training. Daily aerobic exercise—and possibly the daily practice of yoga, tai chi, or qi gong—would cut down on arousal and likely promote sounder sleep.

On the other hand, a team of Italian researchers thinks the problem is mainly perceptual. These patients “may have a sort of agnosia [a partial or total inability to recognize something by use of the senses] of their sleep,” they conclude.

Investigators at The University of Alabama treated four paradoxical insomnia patients with a kind of “sleep education.” After behavioral therapies failed to help, a specialist talked to each patient about sleep and sleep staging. Together, they looked at the patient’s EEG, watched a video of the patient sleeping, and noted differences between the recording of sleep and patient perceptions. After receiving the information, 2 of the 4 patients reported falling asleep much more quickly and sleeping a lot longer.

Ralph Downey, a sleep specialist at Loma Linda Sleep Center, conducts therapy sessions for people with paradoxical insomnia in a sleep lab. Each time a patient falls asleep, she’s awakened and asked whether she thinks she’s asleep or awake. After repeated awakenings, the patient develops the ability to recognize the bodily cues that accompany sleep. Her perception of sleep becomes much closer to that recorded on her EEG.

Michael Schwartz, whose SleepQ app I reviewed last fall, believes that the same thing can be accomplished with a smart phone and an app costing just $4.99.

If you found this information helpful and/or interesting, please like and share on social media sites. Thank you!

 

Insomnia: Let’s Stop Blaming the Victim

It’s cruel to blame people for health problems they have little if anything to do with creating. Yet the urge to do so is powerful when the true causes of an affliction remain unknown. In the 20th century many illnesses were seen as psychological or behavioral problems, and insomnia was one.

We’re in the 21st century now, and biology and neuroscience are teaching us that the causes of many chronic disorders and serious diseases are complex. But some people still regard insomnia as stemming from “bad” behavior or as “all in the head.” Here’s my take.

BlamingIt’s cruel to blame people for health problems they have little if anything to do with creating. Yet the urge to do so is powerful when the true causes of an affliction remain unknown. In the 20th century many illnesses were seen as psychological or behavioral problems.

Cancer? A disease of people who repressed their emotions. All that pent-up emotion and hostility just had to find expression some way, and it did so by causing cells to run amok.

AIDS? Brought on by sexual promiscuity.

Narcolepsy? Before the recent discovery of orexins–neurotransmitters that help keep us awake and which are lacking in narcoleptics, making them prone to daytime sleep attacks—narcolepsy was explained as a psychological problem of people who lacked motivation.

Insomnia? It, too, was self-created. “You! Are really the major cause of your own insomnia,” declared self-help author Valerie Moolman in 1968, at a time when sleeplessness was blamed on everything from internalized emotion and a desire for attention to bad habits like worrying and staying out late.

We’ve Come a Long Way, Baby . . . or Have We?

We’re in the 21st century now–century of the brain. Biology and neuroscience are teaching us that the causes of many chronic disorders and serious diseases are complex.

But wait. Near the end of journalist David K. Randall’s new book, Dreamland, Randall states this: “And yet insomnia is a unique and difficult condition to treat because it is self-inflicted.” Self-inflicted? Aren’t we beyond holding people responsible for a sleep disorder most sleep researchers say is based in part upon vulnerabilities predisposed at birth?

I don’t think we’ve come that far yet. “I have been made to feel like I must be doing something wrong,” wrote Carol, an insomnia sufferer who reviewed my book, The Savvy Insomniac, just last month, “drinking too much coffee (1 cup in the morning) or not really trying to get to sleep.”

“Bad” Behavior

There are some things we can do that will probably interfere with sleep:

  • Drinking coffee later in the afternoon or in the evening
  • Drinking alcohol right before bed
  • Sleeping late in the morning or taking long naps.

Avoiding these behaviors will likely improve sleep. But many of us already know these things and take them to heart. We hew pretty close to the straight and narrow . . . and still we have trouble sleeping.

Do We Create Insomnia in Our Heads?

Believing we can’t sleep will make sleep more difficult. Fearing insomnia will, too. Yet we don’t develop such beliefs and fears of our own volition. We learn them unconsciously. (See my blog on fear of insomnia.) And once in place, they’re hard to dislodge. (But not impossible. See my blog on laying fear of sleeplessness to rest.)

Even researchers who theorize that chronic insomnia develops in people who think too much about sleep or try too hard to do it are retreating from this claim as more evidence comes in suggesting the underlying cause of insomnia to be excessive arousal of the central nervous system.

Changing habits and mindsets can go a long way toward helping insomniacs sleep. But it’s time we stopped pointing fingers at the sleepless and started looking at insomnia as the multifactorial sleep disorder it truly is.