Photography by Jens Ingvarsson.
I was recently watching an ad on TV that had a very unrealistic view of narcolepsy, and it got me thinking that most people — including some physicians! — truly don’t know about this sleep disorder. And, what is known in the public tends to be stigmatized and extreme, such as falling asleep while talking with someone.
I commonly see patients with narcolepsy who went through 10 to 15 years of medical tests before getting the proper diagnosis at a sleep center. Patients suffering from narcolepsy are frequently misdiagnosed with a multitude of medical issues, including psychiatric problems such as depression, bipolar disorder or even schizophrenia.
Narcolepsy is an autoimmune sleep disorder that affects one in every 2,000 people — the same prevalence rate as multiple sclerosis. Imagine going without sleep for a few days in a row and how you might feel during the daytime. That’s how patients with narcolepsy feel all day long without proper treatment.
The symptoms can appear all at once or slowly develop over time. All patients with narcolepsy report excessive daytime sleepiness (EDS), sometimes even during dangerous situations, such as while driving or operating heavy machinery. Another common symptom is cataplexy, which affects nearly 50% of narcolepsy patients. Cataplexy is a sudden, temporary loss of muscle strength that is usually triggered by strong emotions such as anger, surprise or laughter. It can range from mild — brief weakness in the face or knees — to severe — resulting in a complete physical collapse. Cataplexy sometimes appears as the initial symptom of narcolepsy and may change in severity over time.
Other symptoms of narcolepsy include hypnagogic hallucinations, which involve seeing vivid images that occur when a person is falling asleep or waking up, as well as disturbed/broken nighttime sleep despite daytime sleepiness. Some people experience sleep paralysis, which is a brief loss of muscle tone that happens when falling asleep or waking up whereby you’re mentally awake but not able to move your body for a short while, as well as automatic behaviors, such as performing habitual tasks while not being fully aware of it at the time.
Many patients with narcolepsy also report problems with attention, concentration, and memory, as well as occasional double vision, headaches and trouble losing weight.
It’s no surprise that the resulting sleepiness can negatively impact the ability to fulfill school, work or social obligations. Depression and anxiety can also stem from social and occupational troubles. Some patients with narcolepsy may be labeled “lazy” or “unmotivated” because of their sleepiness, further worsening their mood.
If you have any of the above symptoms, especially excessive daytime sleepiness, and find it is difficult to drive, attend work or school, perform daily activities and chores, or socialize, talk with your doctor to rule out any other medical or psychiatric problems that may be the culprit. If nothing else is found to contribute to these symptoms, be proactive and ask for a referral to a sleep specialist. Although many doctors are learning about narcolepsy, the vast majority still are not well versed in recognizing it.
There is not yet a cure for narcolepsy, but a combination of pharmacologic and behavioral treatments can prove very useful. There are many medications available that can help target specific symptoms of narcolepsy and some target multiple symptoms at once. Management of narcolepsy isn’t a “one size fits all” deal — everyone is different and various medications and behavioral strategies, such as napping and consuming caffeine, need to be tailored to each patient.
A proper medication and behavioral management plan can help lessen the frequency and severity of the symptoms, allowing for many patients with narcolepsy to have an improved overall quality of life — able to drive, work, and socialize normally.
The more we get over the stigma and misconceptions of narcolepsy, the closer we can come to rapid diagnosis, immediate treatment and one day, finding a cure.