Narcolepsy: Extreme Daytime Sleepiness, Cataplexy and Next Steps

What it involves

The MedlinePlus encyclopedia explains that narcolepsy is a nervous system problem that causes extreme sleepiness and attacks of daytime sleep. Experts are not sure of the exact cause, but many people with it have a low level of hypocretin, a brain chemical that helps you stay awake. It can run in families.

Who this is for

• Adults and teens with a strong urge to sleep that they cannot control during the day.
• Patients who feel their muscles give way with strong emotions such as laughter or anger.
• People who see or hear things as they fall asleep or wake up, or cannot move for a few minutes on waking.
• Anyone whose sleepiness has already caused a near miss while driving or on the job.

What to expect

• Questions about when you fall asleep, what triggers it, how you sleep at night and what medicines you take
• A physical exam and a review of other conditions that cause sleepiness
• Blood work, which the practice offers, to look for other conditions that can cause similar symptoms
• A referral for a sleep study, a daytime nap test and a sleep or neurology specialist when those are needed

The four main symptoms

According to MedlinePlus, the most common symptom is extreme daytime sleepiness: a strong urge to sleep that can strike after eating, during a conversation or while driving, and that usually passes after a few seconds to a few minutes with the person waking refreshed. Cataplexy is a sudden loss of muscle control, with the head dropping forward, the jaw falling open and the knees buckling, lasting 30 seconds to 2 minutes while you stay aware. The other two are hallucinations as you fall asleep or wake, and sleep paralysis lasting up to 15 minutes. The excessive daytime sleepiness guide covers the many more common reasons for sleepiness.

Two types of narcolepsy

The encyclopedia describes type 1, which involves excessive daytime sleepiness, cataplexy and a low level of hypocretin, and type 2, which involves sleepiness without cataplexy and a normal hypocretin level. It also notes that, surprisingly, many people with narcolepsy do not sleep well at night despite being very tired. That broken night sleep is one reason the condition can look like the problems in the insomnia guide, and a provider asks about both.

What else it can be

MedlinePlus says a provider may order a blood test to check for other conditions that cause similar symptoms: insomnia and other sleep disorders, restless legs syndrome, seizures, sleep apnea, and other medical, psychiatric or nervous system diseases. The restless legs guide, the sleep apnea guide and the first seizure guide describe three of them. Sudden sleepiness with trouble thinking clearly is also covered in the brain fog guide. Sorting out these causes first is the main job of a primary care visit.

How narcolepsy is diagnosed

Your provider does a physical exam and asks about your symptoms, according to the encyclopedia. Further tests can include an ECG, an EEG that measures brain electrical activity, an overnight sleep study, a multiple sleep latency test that times how fast you fall asleep during daytime naps, genetic testing and sometimes a lumbar puncture to look for low hypocretin. People with narcolepsy fall asleep much faster than people without it. Those tests are done through a sleep or neurology specialist; the practice offers the blood work and the first review.

Managing it day to day

There is no cure, but MedlinePlus says treatment can help control symptoms and that the condition can usually be controlled. Lifestyle steps include the same bedtime and wake time every day, a dark and comfortable bedroom, avoiding caffeine, alcohol and heavy meals before bed, not smoking, regular exercise earlier in the day and planned daytime naps. Stimulant medicines can help you stay awake, and some antidepressants and sodium oxybate may reduce cataplexy, though these have side effects and are prescribed by a specialist. Telling employers and teachers about the condition can also help.

Driving, safety and when to be seen

The encyclopedia calls narcolepsy a lifelong condition that may be dangerous if episodes occur while driving or operating machinery, and says there may be driving restrictions that vary by state. Do not drive when you feel a sleep attack coming. Contact your provider if you have symptoms of narcolepsy, if it does not respond to treatment or if new symptoms develop. Call 911 for a collapse with injury, a seizure, or weakness on one side with trouble speaking, which can mean a stroke, as the stroke warning signs guide explains.

Sources

• MedlinePlus Medical Encyclopedia: Narcolepsy
• MedlinePlus: Sleep Disorders