Sleep, 17:S97-5102
© 1994 American Sleep Disorders Association and Sleep Research Society
Non-Pharmacological Approaches to the
Treatment of Narcolepsy
Lucile Garma and Fran90is Marchand
Unite des Troubles du Sommeil, pr J. C. Willer, Hopital de la Salpetriere, Paris, France
Summary: A way of evaluating the part played by non-drug treatments is to study cases of patients who discontinued
stimulant medications but still came back for follow-up visits. Out of 40 patients with narcolepsy-<:ataplexy, three
refused medication because their work was compatible with a regimen of naps (follow-up I year), and 10 stopped
taking drugs when they could adapt nap therapy to a new life-style (follow-up 6.9 ± 5 years). Three interrelated
levels of non-pharmacological treatments of narcolepsy were examined: I) Behavioral management, which includes:
(A) structured sleep schedules: literature shows that a single long afternoon nap proffered greatest performance
benefits in reaction time, significantly increased over a no-nap control condition, with no evidence of sleep inertia.
The placement of this nap might yield better results if scheduled I hour before that of a normal subject. (B) Dietary
factors: little is known about the effects of diet in narcoleptics; however, avoiding simple sugars will improve
alertness in some patients. 2) Medical and psychiatric aspects of care. 3) Social factors as an interface between the
patients and their environment. Key Words: Narcolepsy-Behavioral methods-Psychopathology-Follow-up.
Non-pharmacological treatment of narcolepsy--<;ataplexy has more or less always been part of the general
therapy (1), but there is now new interest as we know
more about their effects. The potential benefits of adjunctive behavioral interventions are receiving adequate attention because, despite the medications available to treat narcolepsy, many patients still experience
their narcoleptic symptoms (especially somnolence) to
moderate and frequent degrees (2).
A way of evaluating the part played by non-pharmacological treatments is to study the case of patients
who discontinued the stimulant medications but still
came back for follow-up visits. At our sleep disorders
unit in the past 20 years, 62 patients were diagnosed
clinically and by polysomnogram as having narcolepsy--<;ataplexy: 40 male, 22 female, average age 41.4
years, range 17-63. All had had a history of more or
less irresistible sleep attacks, excessive daytime sleepiness and cataplexy. All exhibited sleep onset latencies
under 5 minutes and two or more sleep-onset rapid
Accepted for publication August 1994.
Address correspondence and reprint requests to Dr. Lucile Garma,
Unite des Troubles du Sommeil, H6pital de la Salpetriere, 47 Boulevard de I'H6pital, 75651 Paris Cedex 13, France.
eye movement (REM) periods as determined by multiple sleep latency tests (MSLT).
Twenty out of these 62 were irrelevant for our study.
Fourteen came primarily for diagnosis and laboratory
evaluation purposes and were referred back to their
physician. Six are too recent.
Out of the 42 remaining, 13 patients (31 %) refused
or discontinued the stimulant medications (modafinil,
methylphenidate). Three of them, one yoga teacher and
two fortune tellers, refused medications because their
professional activity was compatible with a regimen
of naps (duration of the follow-up: 1 year). They could
all schedule naps at regular phases of the day. Ten
others stopped taking drugs (follow-up: 1-15 years,
mean: 6.9 ± 5 years) either when they retired (n = 4),
were judged unable to work by social security (n = 3)
or found a job including increased motor activity and
the possibility of programming a regular nap (n = 3).
They came regularly to the sleep center to adapt nonpharmacological treatments to their new life style. They
felt no more need for medication.
We will examine three interrelated levels of treatment. First the behavioral management of narcolepsy,
which includes structured sleep schedules and dietary
factors, second the medical and psychiatric aspects of
care and finally the social factors as an interface between the patients and their environment.
S97
L. GARMA AND F. MARCHAND
S98
••
Advance
long nap
No-nap
I
Short na p
2
4
6
8
10
I
12
14
16
Daytime sleep schedules
~
••
Long nap
o
0'
160' 180'
0'
18
~
~
I
I
20
22
~
0
2
4
Hours
FIG. 1. The three lower panels show a schematic representation
of sleep/wake schedules followed by narcoleptic subjects during no
nap, single long nap and mUltiple short nap conditions. The 24-hour
sleep total was held constant with, in the nap condition, 75% taken
in the nocturnal period and 25% in the naps. The midpoint of nocturnal sleep was also constant across conditions and represents 0°.
The midpoint of the long nap and the third short nap are 180° out
of phase, with the other short naps equidistant in degree across the
daytime period. The figure represents the schedules in a hypothetical
8-hour sleep with nocturnal midpoint at 0400 hours. The single long
nap was most efficacious and resulted in improved sustained performance over the no nap condition. The data also indicate that the
placement of a single long nap might yield even better results were
it scheduled earlier (at 160°) in the day (upper panel) [from Mullington and Broughton (13)].
BEHAVIORAL MANAGEMENT
Structured sleep schedules
The ability to maintain a good quality of alertness
and a sustained performance is facilitated by associating a regularization of nocturnal sleep with a schedule
of therapeutic daytime naps.
Nocturnal sleep schedules
The circadian sleep-wake pattern will be enforced
by a predictable routine of regular sleep-onset and wake
times set by the patient every day of the week. Sleepwake schedules should be based on the average total
sleep time per 24 hours as determined by prior sleep
log data.
In spite of the fact that there is no clear relation
between nocturnal sleep and daytime alertness (3) the
patient must be well aware of the importance of avoidance of sleep deprivation and sleep shifts: too little
sleep has been shown to aggravate narcoleptic symptoms in 54.8% of the patients (4). Rosenthal et al. (5)
have shown in 237 narcoleptics that patients with nocturnal sleep disturbance reported significantly more
naps during the day than patients without nocturnal
difficulties (2.52 ± 2.18 vs. 1.73 ± 0.9, p < 0.05).
It has been suggested by Yoss and Daly (6) that
increasing the amount of nocturnal sleep may be helpful in decreasing the symptomatology in young patients. Relaxation techniques and avoidance of intense
stimulation just prior to scheduled sleep may assist the
patient in extending the night sleep period (7).
Sleep, Vol. 17, No.8, 1994
The idea that daytime organized naps could alleviate
excessive daytime sleepiness (EDS) in narcoleptic subjects has been around for quite some time. Six studies
essentially have investigated the matter. Three have
stressed the effect on alertness; three the effects on
performance.
Alerting effects of naps on sleep pressure as measured
by the MSLT and MWT. Roehrs et al. (8) manipulated
time in bed on the 1600-hour latency test of the MSLT
and varied the time between the 1600-hour latency
test and a subsequent fifth latency test. They compared
the mean sleep latency after IS-minute and 30-minute
naps and found significant improvements in alertness.
The IS-minute and 30-minute naps, however, were
equally effective in increasing alertness. Increased nap
duration provided no additional benefits.
Guilleminault et al. (9) have shown in eight patients,
free of any medication, with and without two scheduled
IS-minute naps at 1230 hours and 1700 hours, a significant improvement of mean wake time (MWT of
4.5 minutes without naps and 9 minutes with naps, p
< 0.0001).
Rogers and Aldirch (10) assessed the treatment value
of daytime naps in narcoleptic subjects under stimulants. The MWT data were compared before and after
subjects attempted to follow a I-month program of
three regularly scheduled IS-minute naps. Mean sleep
latency increased significantly (7.4 ± 6 vs. 10 ± 5.8
min, p < 0.5).
Effects of naps on EDS-sensitive performance indices. In 1976, Billiard (11), using reaction time performance measures, found support for the recuperative
effects of naps in narcolepsy-cataplexy, particularly
non-REM naps. Godbout and Mountplaisir, in 1986
(12), found that five naps (for a total of 100 minutes
of sleep) improved the performance of untreated narcoleptic subjects on the four-choice serial reaction time
test (especially after non-REM sleep).
In the most complete ofthese studies, done by Mullington and Broughton (13), three sleep/wake schedules
were designed: no nap, single long nap and multiple
short nap conditions (Fig. 1). Eight drug-free narcoleptic subjects followed each experimental schedule.
In short, the study of Mullington and Broughton
demonstrates that a single long afternoon nap placed
1800 out of phase with the nocturnal mid sleep time
was most efficacious and resulted in improved performance (four-choice reaction time) over a no nap condition despite the fact that sleep per 24 hours was held
constant. This improvement was substantial in magnitude, an average of 11 % for individual subjects.
In addition, the number of unscheduled sleep episodes (lasting an average of less than 5 minutes) was
NARCOLEPSY NON-PHARMACOLOGICAL TREATMENTS
notably fewer in the long nap condition than in the no
nap condition: 4.3 versus 7.1. The timing of such sleep
in the no nap condition is of particular interest, as
unscheduled sleep episodes tended to occur earlier in
the day (at 160°) than that (180°) of greatest likelihood
of napping in normal subjects. These data, as well as
Lavie's data (14), support previous reports that daytime sleep in patients with narcolepsy-cataplexy is
phase advanced relative to that of normal subjects. The
afternoon nap zone of narcoleptics is situated at least
an hour before that of normal subjects.
Mullington and Broughton's results suggested therefore that the placement of this nap might yield better
results if scheduled earlier in the day, at least 1 hour
before that of a normal subject (upper panel of Fig. 1).
Prior to the long nap there was a steady decline in
performance from time of awakening. The authors also
indicate that such morning impairment might be curtailed by the addition of a single short morning nap,
perhaps even 15 minutes of sleep.
Daytime sleep inertia
In this study, Mullington and Broughton had excluded from analysis tests immediately upon waking.
The sleep inertia is an important factor, however, which
also has to be considered. As is well known, napping
can also have negative effects, one of which is the possible production of sleep inertia, defined usually as
transient performance impairments occurring during
wakefulness following arousal from sleep. There are
anecdotal reports and clinical observations suggesting
that naps of narcoleptic persons, particularly involuntary "sleep attacks", are refreshing and apparently
have no significant sleep inertia effects (3,8,15).
The latest Mullington and Broughton study (16) was
designed to investigate sleep inertia effects associated
with daytime naps in narcolepsy. Contrary to some
subjective reports, sleep inertia, defined as pre-to-postnap comparisons, is in fact quite pronounced following
short naps but was completely absent from reaction
time test results immediately following the single long
nap.
To conclude, Mullington and Broughton's studies
confirm the positive effects of an advanced long nap.
They support the efficacy of napping strategies to alleviate EDS in narcolepsy and suggest that sleep can
be profitably redistributed so that nocturnal sleep is
reduced and supplemented by scheduled diurnal sleep.
Ideally, planning a napping strategy should precede
the use of medications. This predictable and habitual
routine of napping scheduling is critical during initiation or refinement of drug regimen. Daily charting
permits estimation of therapeutic progress.
S99
To conclude this section, let us mention the sleep
therapy, a treatment advised by B. Roth in his book
Narcolepsy and Hypersomnia (17). He writes:
In particularly severe cases resisting treatment, "sleep therapy"
for a period of approximately 14 days is sometimes helpful.
[... ] When all drugs have been withdrawn, the patients sleep
spontaneously-usually for about 16-18 hours daily the first
week and for about 14 hours the second. Following this treatment, the patient's conditions often improved for several
months. (page 190)
Unfortunately this sleep therapy intended to improve daytime functioning is not easy to implement
since narcoleptic patients cannot increase habitual sleep
time after 2 or 3 days (Guilleminault, personal communication).
I>ietary factors
Although many patients report improvement after
an alteration of their diet, there is as yet no scientific
evidence for the direct effect of any dietary factor in
the sleepiness of narcoleptics (9).
A more highly detailed questionnaire survey of eating habits of narcoleptics versus normal subjects was
analyzed by Bell, Guilleminault and Dement, in 1975
(18). More than twice as many nacroleptics as normals
admitted eating snacks during the day and at bedtime,
in addition to regular meals; a much higher percentage
of narcoleptics than normals said they got sleepy after
meals and after big meals. Eighty-three percent of the
narcoleptics versus 50% of the normals mentioned
craving "sweets" of any kind.
Bell (19) has proposed that narcolepsy could be associated with an eating disorder of an allergic type that
includes increased intake, snacking, weight and postprandial sleepiness.
No evidence of an eating disorder intrinsic to narcolepsy was found by Pollak and Green (20) who, in
1990, analyzed sleep, eating behavior and subjective
alertness of narcoleptic and normal subjects while they
lived in a temporal isolation laboratory, first under
scheduled sleep and meals, then under free-running
conditions.
As regards the meal-associated changes in alertness
of narcoleptics in the scheduled condition, subjective
ratings of alertness increased from 90 to 120 minutes
before meal onset to peak at the time of meal onset,
and then rapidly decreased over a period of 40-50
minutes to below the premeal baseline (Fig. 2). The
controls also rated themselves as being more alert at
meal onset. Instead of decreasing after meals, however,
the increased alertness persisted for more than 1 hour
after the meal before returning to the premeal baseline.
Indeed the temporal patterns of naps were found to
be strongly correlated with those of meals. The nap
Sleep, Vol. 17, No.8, 1994
L. GARMA AND F. MARCHAND
S100
~100 %
NARC - SCHED
NARC - FREE-RUN CONTROL - FREE-RUN
~
~ 80 %
Q)
Co
-'2-=10
1
2
:3
-2 -1 0
1 2
3
-2 -1 0
1
2
related problems was identified in 26.8% of patients
with narcolepsy (23). REM suppressants such as alcohol may in fact account for rebound cataplexy and
for some of the daily variability in the severity of narcoleptic symptoms. Along the same lines patients
should avoid drugs that increase daytime sleepiness:
anxiolytics, histaminics, long-acting hypnotics, etc.
3
Time from meal onset (hours)
FIG. 2. Percentiles of subjective alertness by time before and after
meal onset (- 120 to 180 min) for six narcoleptic subjects under the
scheduled condition (left panel) and free-running condition (middle
panel), and seven free-running controls (right panel). Mean ± SEM
[from Pollak and Green (20)].
Dietary stimulants
There may be an important role for nonprescription
stimulants such as tea, coffee, mate, etc., as they have
the advantage of not being considered as drugs and
therefore have a different psychological input. These
beverages should be prepared in a consistent manner
and drunk at scheduled times. The caffeine content of
six cups of strong coffee has about the same stimulant
effect as 5 mg of dexamphetamine (24). Use of the
tablet form permits more precise dosage monitoring.
Mate is of interest because it is at least as stimulating
as coffee, if not more, without its drawbacks and less
familiar. Parkes and Dahlitz cite guarana as a stimulant
(24).
The increased frequency of non-insulin-dependent
diabetes mellitus among narcoleptic patients, compared to the general population, is also notable (25).
Dietary manipulations were performed on a narcoleptic dog colony assuming that changes in neurotransmitter precursors thought to be involved in alertness would improve narcolepsy. No change was
monitored after a 6-month continuous trial (9).
frequency was found to differ markedly before and after
meals (Fig. 3). Considering scheduled meals, naps frequently decreased ca. 90 minutes before meal onset
and increased sharply ca. 30 minutes after meal onset
and then remained elevated for several hours.
Authors conclude that while naps were more likely
to follow meals than to precede them, they were not
more likely to follow larger meals or meals containing
more of any macronutrient. The mechanism underlying this pattern of sleep propensity does not appear
to be an effect of the lunch meals in normals (21) or
in narcoleptics. It would be more likely to reflect an
endogenous circasemidian sleep rhythm (22). Rather
than the meals themselves, the trigger for postmeal
deactivation may be the timing mechanism for meals
that was alluded to earlier. Since the postulated timing
mechanism governs the timing of both sleep periods
and meals, it might also influence the timing of naps
MEDICAL AND PSYCHIATRIC
or alternatively, periods of wakefulness. Meals and bed
ASPECTS OF CARE
rest would be timed by a common mechanism.
This would explain the stronger tendency of narThe quality of care provided to the patient must of
coleptic naps to follow meals than to precede them, course encompass the usual medical and psychiatric
since wakefulness would be maintained while the pro- aspects of care.
pensity to eat is increasing. After the onset of a meal,
both the propensity to eat and to remain awake would Medical aspects
decline and, if the subject is narcoleptic, naps would
intrude (20).
Some narcoleptic patients may have coexisting problems that aggravate their EDS. As part of the physical
examination and general health assessment note must
Dietary practices
be taken of visual problems, sleep apneas (7% of narOn the whole little is known about the effects of diet coleptics) (26), periodic limbs movements and/or a
on alertness and sleep in narcoleptic subjects. How- history of REM behavior disorder (27).
ever, good dietary practices are useful in insuring good
sleep hygiene. Morning and midday avoidance of Psychological and psychiatric factors
"sweets" and carbohydrates, especially simple sugars,
and of large meals, will improve alertness in some
Narcolepsy is not a psychological disability. The
narcoleptics (probably in relation with the production physician treating narcoleptic-cataplectic patients,
of insulin and its sleepiness effects).
however, should be aware of the fact that there may
Abstinence or minimal use of alcohol assist in op- be psychological or psychiatric effects ofthe illness with
timal management of narcolepsy. A history of alcohol- psychosocial difficulties.
Sleep. Vol. 17, No.8, 1994
SlOl
NARCOLEPSY NON-PHARMACOLOGICAL TREATMENTS
A number of studies have shown that as a rule narcolepsy is not associated with any particular personality types (1). No patients examinated by Reinish et
al. (28) showed any clear personality abnormality.
Nonetheless, some studies have documented psychiatric disorders in individuals with narcolepsy, such as
social introversion, adjustment disorders, anxiety, alcohol dependence, personality disorders and higher
prevalence of depressive symptoms. There may also
be a trend toward a higher rate of schizophrenia symptoms in a fraction of narcoleptic patients (29,30).
The prevalence ofdepressive symptomatology among
a national sample of 700 persons with narcolepsy is
higher than has been found in the general population
(31). Patients who experienced depression, reported to
be more severe in younger narcoleptic persons, will be
those more likely to suffer cognitive impairment (32).
A reduced sexual drive and in men impotence are
described more frequently in narcoleptics than in normal subjects (33).
Self esteem of persons with narcolepsy is lower than
in the general population, related to vocational functioning, interpersonal relationships and severity ofthe
narcoleptic tetrad (34).
Narcoleptic patients experience stress from coping
with a chronic medical condition. They often suffer
from severe emotional and interpersonal problems related to their symptoms and the symptoms themselves
may be exacerbated by emotional disturbances (35).
When the narcoleptic patient feels overburdened by
inflexible routines, complex drug regimens and imperfect therapeutic results, supportive, unhurried psychotherapy may be required to bolster his or her alliance with the doctor and ability to cope with feelings
of anger and injustice, and to foster adherence to prescriptions (26).
All narcoleptics are not neurotic, but many will become so. The prevalence of psychiatric symptoms make
it necessary for the health care professionals to be more
sensitive to screening and treating these symptoms.
There has been scant recourse to some techniques
such as hypnosis (36), relaxed autohypnosis (37) or
cognitive intervention in the form of lucid dreaming
training (38). The most commonly prescribed psychological treatments are, as the case may be, individual
or group psychotherapies. One should stress that a large
majority of narcoleptic patients are interested in psychotherapy and support groups (39). Zarcone, an initiator of such group therapies in the seventies, asserted
that their focus was to learn about the emotional adjustment to the symptoms and sharing experiences (35).
Finally the main purpose of these techniques is the
patient's intuitive identification of his state at the time
the symptoms occur (sleep attack, cataplexy, sleep paralysis, hypnagogic hallucinations). Anxiety is thereby
35 %
FREE-RUNNING
SCHEDULED
30 %
<fl
]jc::
25 %
o
~ 20
%
Ui
'015%
C
'~"
'"
10 %
"-
5%
0%
-2
-1
1
2
3
-2
-1
0
Time from meal onset (hours)
FIG. 3. Distributions of intervals from sleep onset (vertical line)
to meal onset of narcoleptic subjects under scheduled and free-running conditions. All meals were included. The intervals from 2.5
hours before to 3.5 hours after meal onset were sorted into 30-minute
bins. The frequencies were normalized as percentages of the total
number of sleep onsets within the interval and averaged across subjects. Mean ± SEM [from Pollak and Green (20)].
decreased. The patient experiences an increased sense
of self mastery over the subjective manifestations of
his neurologic disorder.
An important function of support groups is their
ability to make the feelings and experience of group
members conform to the norms. In self-help groups
(narcolepsy associations), the ability to discuss narcolepsy with one another is often therapeutically beneficial in allaying anxiety about the symptoms. Individual or group counseling sessions have been set up
as a part of an integrated medical and psychosocial
program of care (40).
ORGANIZATION OF LIFE AND WORK
The quality of care provided to the patient must
encompass also the nonmedical aspects of care. There
is much need for counseling about the psychosocial
impact so that patients can optimize their adaptation
to the disease and be realistic in their expectation.
Practitioners may work with patients and families to
develop appropriate coping mechanisms for alleviating
the stress of uncomfortable social situations.
Many patients need a reorganization of their lifestyle
and need to rethink the type of work for which they
are or are not suited. Narcoleptics are much less limited
by what they do than by how long they can do it (22).
Occupations requiring a continuous level of activity
and a stimulating environment can usually be performed adequately, whereas dull, monotonous, sedentary occupations are liable to be poorly performed
and are to be avoided.
Practitioners may assist patients by scheduling activity requiring alertness, motor vehicle driving and
leisure time activities during periods of high wakefulness.
Sleep, Vol. 17, No.8, 1994
L. GARMA AND F. MARCHAND
S102
As regards the interface between patient and envi- 19. Bell IR. Diet histories in narcolepsy. In: Guilleminault C, Dement WC, Passouant P, eds. Narcolepsy. New York: Spectrum
ronment, let us note that if cold increases the alertness
Publications, 1976:221-7.
level, bright light therapy is inefficient (41).
20. Pollak CP, Green J. Eating and its relationships with subjective
alertness and sleep in narcoleptic subjects living without temAdvocacy by a professional may enable employers
poral cues. Sleep 1990; 13:467-78.
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tion of a behavioral state. Neurosci Biobehav Rev 1987; 11 :30717.
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22. Pollak CPo Chronobiological findings in narcolepsy and their
To conclude in a few words, narcolepsy is a global
implications for treatment and psychosocial adjustment. In:
illness as it will affect virtually all aspects of the life of
Goswami M, Pollak CP, Cohen FL, Thorpy MJ, Kavey NB,
eds. Psychosocial aspects 0/ narcolepsy. New York: Haworth
the patient, both personal and social: a global approach
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25. Honda Y, Doi Y, Ninomiya C, Ninomiya O. Increased fre-
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