Dr Charles Lapp is an Associate Clinical Professor of Community Family Medicine and is director of the Hunter-Hopkins Medical Centre in Charlotte, North Carolina. He is one of the world's leading CFS/ME clinicians and readers may recall some of his treatments from previous issues of Emerge. This issue presents his ideas and methods of treating sleeping difficulties in CFS/ME patients.

Some persons with CFS/ME are hypersomnolent, sleeping 12-14 hours and still dozing off during the day. But the vast majority of people with CFS/ME 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 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 report vivid or nightmarish dreams and many are kept awake by jerking of the limbs(nocturnal myoclonus) restless legs or pain. They all complain of unrefreshing sleep and morning phenomenon called 'dysania.' This is a period lasting one to two hours after awakening when the patient is almost too exhausted to drag out of bed, achey and stiff in the joints and mentally foggy.

Restful sleep is the key to improvement in CFS/ME. Anyone who tosses and turns all night could expect to awaken tired, irritable, achey and sore.

Treatment of sleep disruptions begins with good sleep habits: when possible, maintain a regular bedtime, avoid caffeine, exertion and other stimulation for an hour or more before bed and use the bed for sleeping only-not reading, TV or homework! If you have trouble failing asleep or find yourself wide awake in the middle of the night, get up. Go to an easy chair or couch and do something quiet, read, listen to the radio or watch television. Once you feel sleepy again, return to bed. If you awaken briefly but often during the night, consider using a red night light. 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 (25-50 mg), Tylenol PM or Excedrin PM.

If these don't help, I suggest melatonin, the natural brain hormone that induces restful 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 0.1mg to 1.0mg 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 (1mg to 20mg) plus the Valium-like drug Klonopin (at 0.5 to 1mg) nightly. Klonopin is rapid acting and helps you to fall asleep, while doxepin keeps you asleep. The next choice is trazadone (50mg nightly), an antidepressant that increases the depth and quality of sleep. Next I would try Ambien (5-10mg nightly), which is a uniquely structured sleep drug that is only mildly habit forming and does not seem to lose effectiveness over time. Other options include Ativan, Xanax, Valium, Halcon, Doral, Prosom, Restoril, but these tend to habituate and adapt (wear off) after time.

More important than medications, people with CFS/ME should strive to accommodate their own body rhythm (or diurnal cycle) which is shifted several hours to the right. That is, if you were used to falling asleep at 10.00pm, your body might now feel more comfortable nodding off at 1.00 or 2.00am. 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 night-time body rhythm cycle. Then upon awakening open all the blinds and curtains so that you get plenty of light exposure for two to three hours each morning. In the darker northern climates it may be necessary to invest in a light box to accomplish this.

Occasionally there will be periods when the person just can't sleep at all for 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.

Reprinted from Emerge, Autumn 1999.