An estimated 1 out of every 2,000 people in the United States is affected by narcolepsy, according to Narcolepsy Network. Worldwide, as many as three million people may be affected by narcolepsy. As widespread as the disorder is, it is often a misunderstood disorder and one that goes undiagnosed and untreated.

Symptoms of narcolepsy often first appear between the ages of 10 and 30 and can include excessive daytime sleepiness, sleep paralysis and hallucinations.

Narcolepsy FAQs

Do you have questions about narcolepsy? Are you looking for resources and information about this sleep disorder? If so, browse our narcolepsy FAQs to find the answers to the questions you may have.

Yes. Typically, the first symptoms of narcolepsy appear between the ages of 15 and 30. The most common symptoms of this chronic sleep disorder include excessive daytime sleepiness, cataplexy, sleep paralysis, hypnagogic hallucinations and losing memories of automatic behaviors. These symptoms come and go throughout a person’s life, and can improve over time.

No. Narcolepsy is believed to be caused by an immune response that damages and eventually destroys a group of neurons that contain a neurotransmitter called hypocretin, also known as orexin. Because the damage to these neurons is permanent, narcolepsy is a chronic condition.

No. While narcolepsy is a lifelong, chronic condition, it tends not to worsen as a person ages. In fact, in some cases, symptoms can partially improve over time. However, once narcolepsy has begun to develop, it almost always remains as a lifelong, chronic condition.

The effect that caffeine has on narcolepsy symptoms can vary dramatically from person to person. For some individuals, caffeine helps combat drowsiness and boost alertness. For others, caffeine exacerbates the extreme highs and lows of energy levels and attention that come with narcolepsy.

When consumed in combination with stimulant medications, which are frequently prescribed to improve narcolepsy symptoms, caffeine can have adverse side effects, including:

  • Jitteriness
  • Increased heart rate
  • Anxiety
  • Diarrhea

If consumed late in the day, caffeine can also make it harder to fall asleep. Lack of sleep can have potentially detrimental effects on people with narcolepsy — people who already have difficulty keeping their energy levels high even after a good night’s sleep. To help mitigate this risk, it’s best for individuals with narcolepsy to avoid drinking caffeine five to seven hours before sleeping.

Yes, narcolepsy can be misdiagnosed, and it often is. A study of patients diagnosed with narcolepsy found that over 50 percent were misdiagnosed. This confusion is likely because the symptoms of narcolepsy are similar to those of other sleep disorders, including sleep apnea, sleep deprivation and parasomnia, or mental health conditions like depression and anxiety.

A misdiagnosis isn’t merely inconvenient or frustrating, it can also dramatically impact an individual’s quality of life and personal safety. To ensure that people with narcolepsy receive proper medical interventions, it’s crucial they seek multiple medical opinions to ensure they’re receiving an accurate diagnosis.

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