What's Keeping You Up at Night?

By Anna Quon

Dreaming of a good night’s sleep? You’re not alone. Getting enough shut-eye is difficult for many people with disabilities. Sleep disorders can be caused by physiological, biological and psychological factors, and certain disabilities predispose individuals to sleep problems.

Kathleen Morrison knows how it feels to have poor-quality sleep. Several years ago, the Dartmouth, Nova Scotia, resident sustained a brain injury in a car accident and spent a month in a coma. For several weeks afterwards, dealing with her recovery and feeling stressed, she had trouble falling asleep and staying asleep. “I was getting as little as four hours of sleep every night. I was so tired, it was horrible,” she says.

After talking to other people with brain injuries, Morrison found that almost all of them experienced insomnia. Morrison says a doctor explained to her that after a hard hit to the head, “the pathways in your brain get jumbled and mixed up,” and that can lead to problems sleeping. Dr. Douglas McKim practises respiratory rehabilitation and sleep medicine at the Ottawa Hospital and is an associate professor at the University of Ottawa. He says that people with brain injuries can exhibit reduced alertness or hyperexcitability, their circadian rhythm (biological clock) may be off, and they may not respond normally to environmental cues to sleep, such as the dimming of light in the evening.

“Someone with a brain injury may be unable to initiate sleep properly, have fragmented sleep, take meds that affect sleep, or be depressed,” says McKim. Depression itself often causes abnormal sleep patterns. In addition, people with disabilities are also susceptible to the same sleep disorders as the non-disabled population.

Despite the fact that we spend roughly one-third of our lives sleeping, sleep itself is still a scientific mystery. “We think of sleep as an on-off switch, an absence of consciousness,” says McKim. “Nothing could be further from the truth.”

Adequate sleep is essential to health, and the effects of sleep deprivation can be serious. Sleepless people may be more irritable, have trouble remembering things and be more prone to accidents. Lack of sleep may also be related to diabetes, obesity, immune-system dysfunction, and many illnesses.

SLEEP SCIENCE

There are two kinds of sleep: Rapid Eye Movement (REM) sleep is related to dreaming and composes about one-quarter of our time sleeping. Non-REM sleep includes lighter and deeper (slow-wave) stages, with the latter usually predominating in the first three hours of sleep. It is believed that slow-wave, non-REM sleep might be related to restoration of our physical functioning, while REM might be connected to the functioning of intellect and memory.

There are approximately 88 distinct sleep disorders listed in the International Classification of Sleep Disorders (ICSD). These include dyssomnias (disorders of initiating and maintaining sleep and disorders of excessive sleepiness); parasomnias (disorders that primarily do not cause a complaint of insomnia or excessive sleepiness); sleep disorders associated with medical/psychiatric disorders; and proposed sleep disorders (those for which insufficient information is available to confirm their acceptance as definitive sleep disorders).

A GP might refer a patient to a sleep specialist or clinic if he or she exhibits symptoms such as excessive daytime sleepiness; sleep apneas (frequent cessations of breathing during sleep, accompanied by loud snoring each time breathing resumes); and disrupted nighttime sleep, during which the patient awakes several times. Other symptoms include waking up with headaches, a reduced sense of well-being, forgetfulness, a lack of energy, depression, and difficulties with learning and concentration.

To diagnose a sleep disorder, a specialist needs a person’s thorough clinical history and often a polysomnograph, an all-night test that is used to analyze sleep patterns. Electrodes are placed on the person’s scalp, at the outer edges of the eyelids and on the chin and legs. Bands to measure chest and abdominal respiratory efforts are added.

A multiple sleep latency test (MSLT) using similar recording equipment may be taken during the day while the patient is given opportunities to nap. The test measures the amount of time needed to fall asleep and determines if the patient enters REM sleep quickly.

Availability and accessibility of sleep clinics across Canada can be problematic. McKim says that most hospital labs would have some accommodations for people with disabilities, but they may be expected to bring a family member or attendant to assist with transfers and personal needs. “I personally try to manage sleep-related breathing disorders at home with overnight oximetry studies [which measure the concentration of oxygen in the blood] instead of full sleep studies,” says McKim.

FINDING RELIEF

Often, people who have recently acquired a disability may assume their sleep difficulties are part of the territory, or rank sleep as a low priority compared to other medical needs associated with their disability. That was the case for Spencer Bevan-John of Dartmouth, who had an arteriovenous malformation (AVM) in 1988 that required an operation. It left him in intense and unremitting pain.

“When I was in hospital, it was a nightmare. I have never been in so much pain in my life,” Bevan-John says. The fact that the pain kept him awake almost 24 hours a day was secondary in importance to the pain itself. “I’d wish I could sleep because it was the only escape from constant pain.”

Bevan-John is clearly angry as he describes how the surgeon would not prescribe him narcotics for the pain, although studies show their use in pain control does not usually result in addictions. He did a lot of reading about spinal cord pain, and tried some of the techniques he came across in the literature. He visited a pain clinic, where he was told that he was already doing everything possible to relieve the pain.

Bevan-John now has a GP whose practice includes a number of people with spinal cord injuries. “Having a knowledgeable, empathetic and good GP has been crucial for me in helping me cope with pain and many of the attendant problems, such as sleep disruption,” he says.

The doctor prescribes Bevan-John strong sleeping pills as well as drugs to help control the SCI pain and spasticity. Bevan-John doesn’t need to take all of the drugs every week or even every month, but says, “Medication has been my salvation. Just knowing I have it on hand is a tremendous tonic.”

Kathi Giberman of Chester, Nova Scotia, has fibromyalgia, which can also cause sleep problems. She used to lie awake for hours at night, and experienced symptoms including anxiety, a “crawly” feeling on her skin, restlessness, lower back and leg pain, and muscle spasms. She would wake up exhausted, with migraines and short-term memory problems. Giberman’s doctor prescribed the antidepressant amitryptiline, which reduces her insomnia and pain. “Since then, I’ve rarely not taken amitryptiline,” she says.

Besides medication, there are other tools in a sleep specialist’s arsenal, including lifestyle changes, cognitive-behavioural therapy, medical devices and even corrective surgery.

BREATHING ROOM

Pain, spasms and problems with breathing and swallowing can interfere with the sleep of people with disabilities. People who have had a stroke are at greater risk for sleep apnea and difficulty swallowing, which may result in aspiration (secretions normally swallowed are sucked into the airway).

People with respiratory problems, such as emphysema and chronic bronchitis, have no greater risk of sleep apnea, but have less breathing capacity to deal with it when it occurs, says McKim.

People with post-polio syndrome, multiple sclerosis or spinal cord injuryoften have muscle weakness that causes their coughs to be less effective. This can make clearing secretions from the airway a problem during sleep as well as at other times. Where gastroesophageal reflux disorder (GERD) is also present, aspiration may occur with limited ability to clear the airways.

In individuals with weak or paralyzed diaphragms, lying flat may interfere with breathing. For example, about half of people with amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease), McKim says, have orthopnea, the inability to lie flat and breathe comfortably. It is important that this symptom is brought to the attention of physicians. Elevating the head of the bed or sleeping on a wedge or additional pillows may help.

Up to 10 percent of the adult male population may have sleep apnea, which accounts for 60 to 70 percent of referrals to the sleep lab, says McKim.

In general, sleep apnea takes two forms: obstructive sleep apnea (OSA), in which the brain drives the body to breathe but the process is blocked by an upper airway obstruction; and central sleep apnea, where the central nervous system’s drive to breathe may not be strong enough.

A continuous positive airway pressure (CPAP) device, which provides pressured air through a mask, helps most people with obstructive sleep apnea. Non-invasive ventilation, which involves the use of a face mask and doesn’t require intubation, may help some people with SCI and other neuromuscular diseases, while those with higher spinal cord injuries may require a tracheotomy or full life support.

Many people with Down syndrome also have OSA, which could be due to the shape of the head and tongue, enlarged adenoids and/or tonsils. McKim adds that the OSA may also be due to neurologic and cognitive issues and the fact that many people with Down syndrome are overweight.

According to a study published in the Journal of Pediatrics in 1999 titled “Sleep Characteristics in Children with Down Syndrome,” children with Down syndrome also experience “significant sleep fragmentation, manifested by frequent awakenings and arousals, which are only partially related to obstructive sleep apnea syndrome.”

Visual disabilities, particularly those that reduce light perception, seem to lead to a greater incidence of sleep disorders.

Visual cues of light and dark signal the pineal gland in the brain to produce melatonin, a hormone that helps regulate biological rhythms such as the sleep/wake cycle. According to an article by Deborah C. Lin-Dyken and Mark Eric Dyken published in Infants and Young Children in 2002, Sleep problems may occur in up to 88 percent of children with developmental and visual disabilities.

HORMONE HELP?

In recent years, there has been a lot of interest in melatonin supplements, sold in capsules, as a sleep aid. Many health professionals, including McKim, don’t recommend it. He says it is not a particularly effective sedative or hypnotic and is generally not recommended because the optimum dosage is not known, and the source of melatonin purchased at health food stores may be questionable.

Consult your physician before trying any herbal or alternative therapy to make sure that it does not pose health risks or interfere with any medication that you are already taking. Chamomile, for example, can cause an allergic reaction in people who are sensitive to ragweed, while large doses of the herb black cohosh, said to improve relaxation, can cause dizziness and nausea.

McKim prescribes medication for a variety of symptoms that accompany sleep disorders, but is in favour of individuals using a number of other methods to improve their sleep.

It’s advice that Kathleen Morrison has taken to heart. She routinely takes medication to help her sleep, but she also has other habits that contribute to good sleep hygiene. She tries to go to bed at the same time each night, only drinks one cup of coffee a day in the morning, and makes sure her surroundings are very quiet when she prepares to sleep.

The medication helps Morrison sleep to be sure, but also makes it more difficult to wake up the next morning. “If I don’t take the meds I don’t sleep,” she says. “Sleep at the best of times is tenuous, but if I make sure I do everything I can to control factors in my environment that affect sleep, I usually get eight hours of sleep a night now. You just don’t understand how amazingly important sleep is until you don’t get it anymore.”

Anna Quon is a freelance writer living in Dartmouth, Nova Scotia. She recently released a book of poetry titled Half Empty (www.neeto.ca).

PILLOW TALK

Try these tips to improve your chances of getting quality rest.

* Get up at the same time each day.
* Get regular exercise (preferably in the morning, and not close to bedtime).
* Eat regular meals. A light snack before bed may help you sleep, but a heavy meal will not.
* Go to bed sleepy. If you can’t sleep after 15 minutes, get out of bed, go to another room, and do something relaxing, such as meditation or reading.
* Avoid napping.
* Reserve your bedroom for sleeping and intimacy, not for working or watching TV.
* Avoid consuming caffeine (tea, coffee, chocolate) and alcohol.
* Make sure the bedroom is quiet and dark.
* Keep a comfortable room temperature (about 18éC/65éF) is recommended).
* Take sleeping pills only occasionally. Chronic use is ineffective.
* Avoid worrying.


SNOOZE CLUES

Check out expert advice on making your nights more restful.

SURF

* “Talk About Sleep” (www.talkaboutsleep.com) offers info about sleep disorders, a self-assessment quiz, message boards and chat rooms.
* The Canadian Sleep Society (www.css.to) has contact information for sleep clinics and labs across the country.
* SleepNet (www.sleepnet.com) and Eye on Sleep (http://info-wrks.com/eyeonsleep/) have information sheets on sleep disorders.
* Tips for Nighttime Anxiety Visit http://panicdisorder.about.com/cs/shsleephygiene/a/nighttimetips.htm

READ

* Sleep Better!: A Guide to Improving Sleep for Children with Special Needs, by V. Mark Durand (Brookes Publishing, ISBN: 1557663157)
* Can’t Sleep, Can’t Stay Awake: A Women's Guide to Sleep Disorders, by Dr. Meir Kryger (HarperCollins Canada, ISBN: 0006394698)