Do I Have Narcolepsy?
Living with the symptoms of a sleep disorder can leave you feeling Beyond Tired®. Learn more from the NSF here.
When is extreme tiredness more than just exhaustion? Know the signs and symptoms of narcolepsy, plus diagnosis and treatment options.
Excessive fatigue and daytime sleepiness aren’t always just the result of a few nights of poor sleep. These symptoms could be a sign that you have narcolepsy, a chronic sleep disorder that can cause sudden, strong urges to sleep, even in unexpected situations.
Learn about the risk factors and symptoms of narcolepsy, along with how to get a diagnosis and what treatment options are available.
What is Narcolepsy?
Narcolepsy is a neurological disorder that affects the regulation of the sleep-wake cycle. The boundary between sleep and wakefulness can become blurred in narcolepsy, causing someone to enter rapid eye movement (REM) sleep immediately, rather than progressing through earlier stages of the typical sleep cycle.
People with narcolepsy may wake up in the morning feeling well-rested, but they’re unable to sustain that alertness throughout the day. As a result, people with narcolepsy often feel excessively fatigued and frequently fall asleep during daytime hours, even when they’re engaged in conversation, work, or other activities.
Narcolepsy affects men and women equally. Symptoms usually start to appear in childhood or young adulthood; however, the onset of narcolepsy can occur at any life stage.
Narcolepsy can make it hard to cope with daily life and can often lead to emotional distress. People with narcolepsy may struggle to maintain academic, professional, and social activities.
Are There Risk Factors for Narcolepsy?
Most cases of narcolepsy are thought to be due to a lack of a brain chemical called orexin (or hypocretin), which promotes wakefulness and helps to regulate sleep. Researchers currently believe that people are born with a genetic predisposition to develop narcolepsy; eventually, often during childhood or teenage years, a triggering event may cause the onset of narcolepsy. After that, the body’s immune system becomes confused and mistakenly attacks the brain cells that produce orexin which then leads to symptoms of narcolepsy.
Possible triggering events include hormonal changes, major stress, a brain injury, or an infection.
What are the Symptoms of Narcolepsy?
The most common narcolepsy symptom is excessive daytime sleepiness (EDS) which refers to an inability to stay alert during normal daytime hours. Individuals will feel drowsy while awake, despite how much sleep they get at night. The sleepiness can be a subtle, constant feeling of drowsiness or so powerful that someone with narcolepsy can fall asleep suddenly, even when they’re in the middle of a conversation or a task. These sudden bouts of sleep are referred to as “sleep attacks.” These attacks may last a few seconds or a few minutes. In between sleep attacks, some people with narcolepsy may show normal levels of alertness, particularly if engaged in an activity that holds their attention.
While everyone with narcolepsy has EDS, some may experience it differently. EDS may present as feeling irritable, having trouble concentrating, experiencing memory problems, or feeling extremely fatigued.
Cataplexy
Cataplexy is a brief but sudden loss of muscle tone that can cause a number of physical changes. Cataplexy can cause slurred speech, muscle weakness, or even collapse. In children, cataplexy often manifests as small facial tics, like raised eyebrows, mouth movements, lip biting or chewing, and more.
Cataplexy is usually triggered by strong emotions, like laughter, stress, or anger. Cataplexy occurs when the disrupted barrier sleep-wake lets the muscle paralysis that occurs during REM sleep intrude into wakefulness. This particular narcolepsy symptom may appear weeks or even years after EDS. People with narcolepsy don’t all experience cataplexy at the same rate or frequency (some may only have cataplexy a couple of times, while others may experience many episodes in one day).
Cataplexy may be misdiagnosed as a seizure disorder if it is the first symptom of narcolepsy to appear. The difference between cataplexy that occurs in narcolepsy as opposed to with seizure disorders is that people with narcolepsy remain conscious during cataplexy.
Although cataplexy can be disruptive, episodes only last a few minutes at most and resolve on their own.
Hallucinations and Sleep Paralysis
People with narcolepsy may experience sleep paralysis while falling asleep or waking up. Similar to cataplexy, during sleep paralysis individuals cannot move but remain conscious. During sleep paralysis or during sleep-wake transition periods without sleep paralysis, individuals with narcolepsy may have strong, dream-like hallucinations as they’re falling asleep (called “hypnagogic” hallucinations) or waking up (called “hypnopompic” hallucinations).
Interrupted Nighttime Sleep
Ironically, while people with narcolepsy feel fatigued during the day, about half of all people with narcolepsy report trouble sleeping at night. Someone with narcolepsy may have trouble falling asleep and staying asleep.
How to Diagnose Narcolepsy
To diagnose narcolepsy, individuals will likely be asked to keep a sleep journal for one to two weeks. They’ll also undergo a physical exam to rule out other neurological conditions, and their healthcare provider will ask for a full medical history.
Two specialized sleep study tests are required for a narcolepsy diagnosis: a polysomnogram (PSG) and a multiple sleep latency test (MSLT). A PSG is an overnight recording of brain, muscle and breathing activity to help determine when REM sleep takes place. An MSLT assesses daytime sleepiness by measuring how quickly a person falls asleep during 4 to 5 nap opportunities and whether they enter REM sleep.
What are Treatments for Narcolepsy?
Medications and lifestyle changes are recommended to improve symptoms of narcolepsy.
Healthcare providers will often prescribe medicine to stimulate the central nervous system and help someone with narcolepsy stay awake during the day. Potential stimulants may include modafinil, armodafinil, dexamphetamine, methylphenidate, solriamfetol or pitolisant. In addition, both sodium oxybate and lower-sodium oxybate are now FDA-approved for treating both excessive sleepiness and cataplexy.
Healthcare providers may also prescribe selective serotonin reuptake inhibitors (SSRIs) or serotonin and norepinephrine reuptake inhibitors (SNRIs). These medications suppress REM sleep and help reduce symptoms of cataplexy, hypnagogic hallucinations, and sleep paralysis.
Lifestyle changes can also be effective in reducing symptoms of narcolepsy. Taking frequent naps (15-20 minute duration scheduled throughout the day), sticking to a regular bedtime routine with adequate time to sleep, avoiding caffeine and alcohol before bed, and other methods of practicing good sleep habits can all help lessen the symptoms of narcolepsy.
While narcolepsy can be a worrisome condition, recognizing symptoms early can help secure a diagnosis and treatment options so you can enjoy a significantly improved quality of life.