||Medical: Provider Information
Dr. Charles W. Lapp
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.
MD Originally published in Youth Allied By CFIDS Summer 1996