Sleep Disorders

By Charles W. Lapp, MD

Originally published in Youth Allied By CFIDS, Summer 1996


Some persons with CFIDS (PWCs) are hypersomnolent, sleeping 12-14 hours nightly and still dozing off during the day. But the vast majority of PWCs have difficulty initiating and maintaining sleep (DIMS). I suspect that hypersomnolence is one way the body "shuts down" to promote recovery, as hypersomnolence usually occurs at the onset of illness and with some relapses.

DIMS, on the other hand, frequently occurs with relapses or with overexertion. Patients say that they are exhausted, but their brains are wide awake and they are unable to fall asleep - a phenomenon that I describe as "tired but wired." Most patients report vivid or nightmarish dreams and many are kept awake by jerking of the limbs (nocturnal myoclonus), restless legs or pain. Universally my patients complain of unrefreshing sleep and a morning phenomenon called "dysania." This is a period lasting 1-2 hours after awakening during which time the patient is almost too exhausted to drag out of bed, achy and stiff in the joints and mentally foggy.

Restful sleep is key to improvement in CFIDS. Anyone who tosses and turns all night could expect to awaken tired, irritable, achy and sore.

Treatment of sleep disruption begins with good sleep habits: when possible, choose a regular bedtime; avoid caffeine, exertion and other stimulation for an hour or more before bedtime; and use the bed for sleeping only - not reading, TV or homework! If you have trouble falling asleep or find yourself wide awake during the middle of the night, get up. Go to an easy chair or couch and do something quiet like reading, listening to the radio or watching television. Once you feel sleepy again, return to bed. If you awaken briefly but frequently during the night, consider using a red night light, as regular white light has a tendency to awaken us.

Sleep is so important that I do not hesitate to use medication if necessary. I generally start simply, recommending over-the-counter treatments such as the herb valerian (500-750mg nightly), a mild antihistamine like Benedryl (25-50mg), Tylenol PM or Excedrin PM.

If these don-t help, I suggest melatonin, the natural brain hormone that induces restfulness in sleep in normal individuals. Natural melatonin levels tend to be low anyway in persons with chronic illnesses. Melatonin supplements should be taken about one-half hour before bedtime. The dose is very individualized; start with a small dose of 0.1 mg to 1.0 mg nightly (depending on what is available) and increase the dose until some success is achieved. The maximum dose is 3 mg in young people, 6 mg for those over 50 and never more than 9 mg. Excessive doses may cause jitteriness or headache. Always use synthetic (that is, not from animal sources) and sublingual (under the tongue) forms of melatonin for best results and safety.

The next step in sleep management is prescription medication. I have had the best success with low doses of the antidepressant doxepin (1 mg to 20 mg, typically 10 mg) plus the Valium-like drug, Klonopin at 0.5 to 1 mg nightly. Klonopin is rapid-acting and helps you to fall asleep, while doxepin keeps you asleep. The next choice is trazadone (50 mg nightly), an antidepressant that increases the depth and quality of sleep. Next I would try Ambien (5-10 mg nightly), which is a uniquely structured sleep drug that is only mildly habituating and does not seem to loose effectiveness over time. Other options include Ativan, Xanax, Valium, Halcion, Doral, Prosom, Restoril and others, but these tend to habituate and adapt (wear off) after time.

More important than medications, PWCs should strive to go with the flow or accommodate their own body rhythm. Studies of cortisol production in PWCs suggest that the natural body rhythm (or diurnal cycle) is shifted several hours to the right. That is, if you were used to falling asleep at 10:00 pm, your body might now feel more comfortable nodding off at 1:00 or 2:00 am. Similarly, if you toss and turn all night, or if you are up for an hour or two, it is best to sleep in the next day until you feel somewhat rested. When this shifted body rhythm interferes with work, school or social activities, however, I highly recommend using melatonin to trigger your nighttime body rhythm cycle, then upon awakening opening all the blinds and curtains so that you get plenty of light exposure for 2-3 hours each morning. In darker Northern climates it may be necessary to invest in a light box to accomplish this.

Occasionally there will be periods when the PWC just can't sleep at all days. In such cases it is best to nap and catch up whenever possible, but I will occasionally prescribe powerful soporifics such as chloral hydrate or short-acting barbiturates. When used for short periods of time, these generally induce a reasonable sleep and re-establish a more normal sleep cycle.