What to know about narcolepsy with cataplexy

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The National Institute of Neurological Disorders and Stroke (NINDS) describes narcolepsy as “a chronic neurological disorder that affects the brain’s ability to control sleep-wake cycles.”

People with narcolepsy may frequently feel tired, even after feeling well-rested on waking. They may also have interrupted sleep, in which they wake several times.

During a person’s waking hours, episodes of sleepiness can last for between a few seconds and several minutes.

Without treatment, the condition can disrupt cognitive, social, and psychological development or function. It can also cause a person’s social, school, or work life to suffer.

Learn more about narcolepsy here.

The National Organization for Rare Diseases (NORD) uses the term cataplexy to refer to a sudden, extreme muscle weakness. Cataplexy is one of three symptoms commonly associated with narcolepsy.

The other common symptoms are a specific hallucination that occurs just before falling asleep or immediately after waking and a brief period of paralysis on waking up.

The Narcolepsy Network adds that cataplexy causes a sudden loss of muscle tone — either throughout the body or in certain muscles — in response to a strong emotion. When it affects the whole body, it can cause the person to collapse.

The NINDS explains that there are two major types of narcolepsy: type 1 and type 2. Doctors used to refer to type 1 narcolepsy as narcolepsy with cataplexy and to type 2 narcolepsy as narcolepsy without cataplexy.

Although the names of these types have changed, doctors still define the type of narcolepsy by whether or not a person experiences muscle weakness in addition to sleepiness.

Learn more about cataplexy here.

Research has shown that the most likely cause of type 1 narcolepsy is insufficient hypocretin in the brain.

Hypocretin is one of several hormones that affect the wake-sleep cycle. Although researchers need to carry out additional studies to build their understanding of the exact role of hypocretin, they have noted that an insufficiency or lack of hypocretin is common among people with narcolepsy.

The NINDS adds that additional risk factors for narcolepsy may include:

• a family history of the disorder
• hypocretin loss due to an autoimmune issue in which the immune system attacks the cells that produce the hormone
• a brain tumor or injury

If a person presents with chronic excessive sleepiness and cataplexy, the doctor is likely to suspect type 1 narcolepsy.

Doctors can only diagnose narcolepsy in people who experience periods of excessive sleepiness during waking hours for at least 3 months.

An additional criterion is a mean sleep latency of less than 8 minutes and two or more early rapid eye movement (REM) sleep periods on a multiple sleep latency test. In some cases, a doctor may also order a lumbar puncture, or spinal tap, which can reveal a low cerebrospinal fluid hypocretin level.

Narcolepsy with cataplexy can present with symptoms similar to those of other, unrelated health conditions.

Narcolepsy can affect people differently in terms of symptom severity. The NORD states that symptoms may come on slowly, appearing one at a time over the course of several years. The symptoms are often mild initially and gradually build in intensity.

Excessive sleepiness is typically the first symptom that a person will experience. However, over time, a person may experience varying symptoms — the severity of which can keep changing. Common symptoms include:

• periods of tiredness, low energy, or drowsiness
• an irresistible urge to sleep, known as a “sleep attack”
• the inability to resist sleeping
• a sudden loss of muscle strength or tone
• disrupted sleep

As the condition gets worse, the symptoms can interfere with a person’s regular activities. They may fall asleep during an activity and stay asleep for a few seconds to a few minutes.

The NINDS adds that other symptoms can include:

• hallucinations — either before falling asleep or during sleep paralysis — that can be unsettling and involve the vision and other senses
• sleep paralysis
• insomnia
• fragmented sleep patterns
• automatic behaviors, where a person will continue doing an activity without conscious awareness, resulting in impaired performance

According to a 2016 study, treatment for both types of narcolepsy generally focuses on treating a person’s symptoms. Some recent therapies that doctors use to treat narcolepsy include:

• modafinil (Provigil) and armodafinil (Nuvigil) for sleepiness
• antidepressants for cataplexy, which include selective serotonin reuptake inhibitors and serotonin and norepinephrine reuptake inhibitors (SSRIs and SNRIs)
• sodium oxybate (Xyrem) for both sleepiness and muscle tone
• stimulants, such as methylphenidate (Ritalin), dextroamphetamine (Adderall), and amphetamine (Evekeo)

The study authors note the need for further sleep studies involving people undergoing treatment to understand the effectiveness of these treatment options.

The NINDS notes that some people may find certain strategies helpful in managing the symptoms. These include:

• taking strategic naps lasting approximately 20 minutes
• avoiding heavy meals, alcohol, or caffeine right before bed
• quitting smoking, if a smoker
• keeping a consistent sleep schedule
• taking time to relax before bed

Anyone experiencing symptoms of narcolepsy should speak with a doctor. They may be able to recommend additional testing to check for underlying conditions or may test for narcolepsy.

A person undergoing treatment for narcolepsy may need monitoring for treatment effectiveness. It is important to report new or worsening symptoms to the treating doctor.

Narcolepsy with cataplexy occurs when a person frequently experiences excessive sleepiness during their waking hours.

The condition is now commonly called type 1 narcolepsy.

Although the exact cause is still not clear, a lack of the hormone hypocretin is likely why a person experiences the disorder.

Treatments tend to focus on reducing symptom severity and providing a better quality of life. A person can also take steps at home to manage their symptoms.