Sleep Disorders: How and Why to Find Help

“Mom, I’m tired. I think I have African Sleeping Sickness.” Last summer this became my 15-year-old’s mantra. We all laughed. She stayed up late, slept late, napped during the day — what did she expect? Being a nurse, I made healthy suggestions: eat healthier foods, keep to a consistent sleep/wake schedule, cut out the naps, take vitamins and get more exercise. Then I took her to the doctor, who asked if she was on drugs (no) or feeling depressed (no). He then took lots of blood — all normal. By October, she was sleeping over 10 hours per night and another three to four hours after school. So we went back to the doctor for more tests — still normal. By December, she was sneaking home during the school day to take naps, and her grades were falling swiftly. She awoke with a headache each day, and no type or dose of medication seemed to diminish the pain. She no longer had the stamina to exercise or the ability to concentrate. She was eating well, taking vitamins and getting 14-16 hours of sleep per day, but now instead of joking about how tired she was, she was sobbing. I was full of questions like, why did she always feel like she needed to sleep? Why couldn’t she do any of the things she used to? Why did she sleep so much? Why couldn’t she remember what they talked about in class that day? What was wrong with her? I told her she needed to go back to the doctor, to which she replied, ” Why? They’ll just ask me the same questions, take blood, tell me it’s not normal to sleep this much, and then they won’t DO anything.” And she was right.

Over the past years, attention has begun to focus on the toll sleep disorders are taking on our society. The National Commission on Sleep Disorders Research, which is part of the National Institutes of Health, estimates that as many as 40 million Americans may suffer from sleep disorders with consequences that include reduced productivity, increased likelihood of accidents, higher risk of morbidity and mortality, and decreased quality of life. Oprah is talking about it, and Life magazine ran it as a cover story. We know sleep deprivation has been used as a form of torture. It can affect recall and memorization. It can affect our ability to think clearly, make rational decisions and react appropriately, both physically and emotionally. It can damage our immune systems, making us more susceptible to disease. Despite all this knowledge, we boast that we get by on three or five hours of sleep and wear our sleep deprivation as a badge of honor — even as we fall asleep at the wheel.

If a government prevents prisoners from sleeping, we say they are violating the Geneva Convention and basic human rights. If our own body does it to us, we think it’s our fault, our weakness. What does the most medically-advanced society in the world have to offer? Shrugging shoulders, puzzled expressions, and after a lot of pushing, a referral to a specialist, usually a neurologist, who gives you stimulant drugs. So now you are awake, but you still feel exhausted.

There are a wide variety of intrinsic sleep disorders arising from malfunctions of different body systems. Some are curable. Some are treatable. Some will get better, and some will get worse, but they all have a common denominator: they prevent you from having a “normal” night’s sleep. Very simply, you are functioning on less sleep than your body requires, and the cumulative effects are the same as if you are a victim of torture. Most people have experienced at least a transient interruption in their sleeping habits: parents of infants, partners of snorers, those excited or anxious about upcoming events. We experience these episodes without any lasting damage, but how do you know if you’ve crossed over that fine line into an actual sleeping disorder? If you do have a sleeping disorder, which one is it? How and where will it be treated, and who is qualified to treat it?

The Internet offers vital information in the area of sleep disorders. Since over 85 percent of insured Americans are enrolled in a managed care plan, you’ll probably have to start by seeing your primary physician. It is unlikely that they are up-to-date on these disorders, so do some surfing and go to your physician armed with facts and research. If you do so, you are more likely to be taken seriously. Your physician needs to do a complete physical and be certain your problem is not related to depression, a thyroid disorder or secondary to another disease. If those are ruled out, and your signs and symptoms indicate a sleep problem, the next step should be a polysomnogram, or sleep study, and a referral to a physician who specializes in sleep disorders. This is a critical point. The more a practice is devoted to sleep studies, the better off you are.

We were assured our neurologist was a sleep specialist, but he worked in a hospital’s neurology clinic and treated patients with epilepsy and countless other conditions. When it came time to prioritize, someone who isn’t sleeping well goes to the bottom of the list. Our daughter’s present neurologist is also located in a hospital, but he’s in the sleep disorder department and sees no other type of patients. He spends all his time dealing with sleep disorders, going to medical conferences, reading current literature and conferring with experts in the field. He may not be able to solve her problem, but we are confident that it won’t be for lack of effort, attention or knowledge. Dealing with these disorders is full of frustration, dead ends, trial and error, and countless doctor visits and testing, some quite uncomfortable. Both the person suffering from the disorder and those who love them need information, support, humor and the best of care and attention.

Treatment depends on the origin of the disorder. For sufferers of sleep apnea (cessation of breathing) or airway disorders, the standard treatment is use of a CPAP (continuous positive airway pressure) machine which has an attached hose ending in a face mask, which you wear while you sleep. My daughter is presently on a two-week trial, and it seems to be helping. However, it took her over a week just to be able to fall asleep wearing the mask, which can be quite uncomfortable. She still has yet to sleep through the night without dislodging her mask, which renders the treatment useless. On one hand, doctors say that good sleep hygiene (a cool, quiet sleeping environment and consistent rising and sleep times) is as important as regular moderate exercise (no sooner than six hours before bedtime). On the other hand, they admit it probably won’t change how terrible she feels. If she is sleep-deprived, where does she get the energy to exercise? Dietary changes or nutritional counseling may help, or they may not do anything at all.

The last resource is drug therapy. She has tried Sinemet®, a drug originally used for Parkinson’s disease, in case she was experiencing restless leg syndrome. It had no effect. She tried pemoline (Cylert®), a central nervous system stimulant. This caused tremors, nausea and insomnia with no relief from the feeling of exhaustion. She tried verapamil and sumatriptan (Imitrex®) to treat her headaches with no success. She tried methylphenidate (Ritalin®), another central nervous system stimulant. She achieved a slight effect, but when they tried for a more therapeutic dose, she experienced adverse reactions and returned to the lower dose. Even at the lower dose, this drug and other central nervous system stimulants carry warnings of high addiction risk, tolerance development, liver damage and hypertensive crises. On a daily basis, they diminish her appetite, make her edgy, cause mood swings, dry mouth, abdominal pain, heart palpitations, muscle pain and weakness. The FDA has approved a new stimulant drug called modafinal, which is supposed to have fewer side effects, but it has not yet been released in the U.S. At this point, any modality of treatment is a guessing game.

Even with the finest physicians and complete compliance, each therapy is an agonizingly slow process for those who are suffering. For an adult, compliance and living with the dysfunction are difficult. They may ask, “Is this medication working? Are the side effects worse than the disorder itself? Does the dosage need to be changed? Do I feel better or worse because of my condition or because of the treatment? How long can I take this medication before it stops working, and then what do I do?” For a 16-year-old, it is self-defining and seems to boil down to her fundamental question, “What is wrong with me, and why can’t they do something to make me feel better?”

Listed below are a few of the larger sites devoted to sleep and sleep disorders. They are written on many levels. You can get everything from detailed scientific research data and practical day-to-day ideas to support, sharing and comfort.

  • The American Sleep Disorders Association
    This site contains eparate sections for professionals and for the patient. Each section has numerous links, including definitions of the different disorders, a listing of where you can go for help and links to other sites.
  • Sleep Home Pages: Brain Information Service
    The World Federation of Sleep Research Societies (WFSRS) was founded in 1987 with the mission to encourage international collaboration, facilitate the generation and dissemination of information and increase public awareness of the importance of sleep research and the impact of sleep disorders. This is a huge site including the WFSRS Newsletter, Abstracts & Papers in Sleep (NAPS) as well as other publications, an electronic database of sleep (also known as BEDS), open forums where you can post questions or messages, an international directory of sleep researcher and clinicians, a listing of support organizations and more.
  • Sleep Well
    This site includes information on snoring, dreams, how to sleep well, respiratory equipment, a list of accredited sleep centers in the U.S., and links to professional journals and sites.
  • Sleep/Wake Disorders Ring
    Ten sites solely devoted to sleep disorders that are linked together.
  • Sleep Medicine Home Page
    Browsers will find information on dreams, medications, pediatric sleep, dental sleep, dreams, as well as descriptions of sleep disorders, federal and state information and links to related sites. From here you can access two newsgroups devoted to sleep disorders: and
  • SleepNet
    This site contains forums for both professionals and the general public on such topics as apnea, insomnia, narcolepsy, infant sleep, children’s sleep, shift work and restless leg syndrome. Information is available on disorders, deprivation, support groups, news, research and sleep labs. Over 100 links are listed.
  • Harvard Sleep Disorders Menu
    This site serves as a forum for posting and reading questions and stories related to sleep and sleep disorders.
  • Narcolepsy Newsletter
    Browsers will find information for people with narcolepsy and their loved ones. This site offers scientific information on traditional and alternative theories and treatments.
  • Source: Ivanhoe News

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