Getting a Diagnosis

  • A sleep specialist will ask about symptoms of narcolepsy and other causes of sleepiness and perform a physical exam. If narcolepsy is suspected, the doctor will order sleep studies to help confirm the diagnosis.
  • Sometimes people with narcolepsy have additional sleep disorders (such as sleep apnea) that should be treated, as they can worsen sleepiness.
  • Obesity and depression are common among people with narcolepsy and may also require treatment.

The first step in getting treated for narcolepsy is getting diagnosed. With proper diagnosis and treatment, the symptoms of narcolepsy usually improve substantially; left untreated, narcolepsy can seriously disrupt day-to-day life, resulting in challenges at school and work, impaired social life, and unsafe driving.

A doctor familiar with narcolepsy will start out by asking about sleepiness, cataplexy, and other symptoms. The doctor will rule out obvious causes of sleepiness: insufficient sleep, sedating medications, or problems with the timing of sleep, such as staying up too late.

The doctor will then do a physical and a neurological examination to look for signs of other disorders that can cause sleepiness or muscle weakness. The majority of people with narcolepsy will have normal exams.

If a doctor suspects narcolepsy, the next step will be to confirm the diagnosis with sleep studies.

Getting a Diagnosis (0:32)

Patient Audrey Cross talks about what a diagnosis of narcolepsy meant to her.


Additional sleep disorders
People with narcolepsy may have additional sleep disorders that can worsen sleepiness and other symptoms, including sleep apnea, sleepwalking, and REM sleep behavior disorder.1 Recognition of these additional problems is important because treating them can improve sleep quality and produce better daytime alertness. For example, if a patient with narcolepsy also has some sleep apnea, it is often helpful to treat the sleep apnea first, as this should produce some improvement in daytime sleepiness. If troublesome sleepiness persists, the doctor may recommend medications for the residual sleepiness caused by the narcolepsy.

Obesity
Many people with narcolepsy have a tendency toward being overweight. Adults with narcolepsy weigh about 15–20% more than would be expected on average in the general population.2, 3 In the months after narcolepsy begins, sudden weight gain can be dramatic, with some children gaining 10–40 pounds over several months.4 The cause of this obesity remains unknown; in general, people with narcolepsy do not eat more than average, but they may burn fewer calories each day, perhaps due to lower metabolism.

Depression
Depression is more common in people with narcolepsy than in the general population.5, 6, 7 This could be due to a natural reaction to having a disorder that impacts many aspects of life, but it is also possible that the depression is a direct consequence of the loss of the hypocretin-producing neurons. Animal research suggests that the hypocretin neurons amplify brain signals related to rewards and positive emotions, and some researchers hypothesize that those positive signals are reduced with loss of the hypocretin neurons. If someone with narcolepsy has persistent feelings of sadness or loss of interest in activities, speaking with a doctor or counselor could be helpful.

References

  1. Frauscher B, Ehrmann L, Mitterling T, Gabelia D, Gschliesser V, Brandauer E, Poewe W, Högl B. Delayed diagnosis, range of severity, and multiple sleep comorbidities: a clinical and polysomnographic analysis of 100 patients of the Innsbruck narcolepsy cohort. J Clin Sleep Med 2013; 9:805–12.
  2. Schuld A, Hebebrand J, Geller F, Pollmacher T. Increased body-mass index in patients with narcolepsy. Lancet 2000; 355:1274–5.
  3. Dahmen N, Bierbrauer J, Kasten M. Increased prevalence of obesity in narcoleptic patients and relatives. Eur Arch Psychiatry Clin Neurosci 2001; 251:85–9.
  4. Poli F, Pizza F, Mignot E, Ferri R, Pagotto U, Taheri S, Finotti E, Bernardi F, Pirazzoli P, Cicognani A, Balsamo A, Nobili L, Bruni O, Plazzi G. High prevalence of precocious puberty and obesity in childhood narcolepsy with cataplexy. Sleep 2013; 36:175–81.
  5. Roth B, Nevsimalova S. Depression in narcolepsy and hypersomnia. Schweiz Arch Neurol Neurochir Psychiatr 1975; 116:291–300.
  6. Fortuyn HA, Lappenschaar MA, Furer JW, Hodiamont PP, Rijnders CA, Renier WO, Buitelaar JK, Overeem S. Anxiety and mood disorders in narcolepsy: a case-control study. Gen Hosp Psychiatry 2010; 32:49–56.
  7. Dimitrova A, Fronczek R, Van der Ploeg J, Scammell T, Gautam S, Pascual-Leone A, Lammers GJ. Reward-seeking behavior in human narcolepsy. J Clin Sleep Med 2011; 7:293–300.

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This content was last reviewed on July 22, 2013