Narcolepsy Nerd Alert: Coping With Cataplexy

What is Cataplexy?

Cataplexy is a distinctive symptom of narcolepsy, defined as “striking, sudden muscle weakness or paralysis triggered by strong emotions.”

• Severity and duration vary widely from person to person.
• Episodes usually last from a few seconds to a few minutes, and the frequency can range from a few episodes per year to several per day.
• Full use of the affected muscles typically returns quickly after a cataplexy episode ends.
• The person remains conscious, even if they are unable to speak or move.

The two subtypes of narcolepsy are defined by the presence or absence of cataplexy:

• Narcolepsy type 1 is narcolepsy with cataplexy.
• Narcolepsy type 2 is narcolepsy without cataplexy.

It is possible to have excessive daytime sleepiness and other symptoms of narcolepsy and then develop cataplexy months or even years later.

Cataplexy feels like I’m a puppet with my strings cut.”

– Kat

What Does Cataplexy Look Like?

Cataplexy can present in a variety of ways:

• Jaw slackening, sagging, or dropping
• Mouth or eyelid(s) drooping, ‘losing your smile,’ eyes looking ‘zoned-out’
• Slurred speech, mumbling, difficulty speaking, or a pause in speech
• Head bobbing or jerking
• Loosened grip, dropping an object, heavy arms, twitching or flailing
• Knees buckling or weak legs
• Partial or full body collapse, falling to the ground, slumping over

Cataplexy episodes may look different in children:

• Muscles in the knees, head, and jaw are commonly affected
• They may experience long-lasting facial muscle weakness, which can look like drooping eyelids, mouth opening, and/or suddenly sticking their tongue out, sometimes without an identifiable trigger
• Sometimes eye closure, arm dropping, trunk leaning, smile loss, and slurred speech are also observed

Before I knew the word cataplexy, I thought I was ‘too sensitive’ to everything. I thought I was like one of those overly dramatic ladies depicted in old movies who would swoon due to their disapproval of something being ‘too much’ for their delicate sense of decency.”

– MJ

Common Cataplexy Triggers

Cataplexy is commonly triggered by strong emotions like humor, elation or anger, but not always. Any sudden or unexpected change in emotional state, even if subtle, can bring on an episode. 

A study conducted by Overeem et al. (2011) found the following to be the 5 most common triggers for cataplexy:

1. Laughing excitedly
2. Making a sharp minded remark
3. Telling a joke
4. Before reaching the punch line of a joke
5. Being tickled

Other common triggers include but are not limited to:

• Unexpectedly seeing a friend
• Feeling angry
• Being startled
• Experiencing an orgasm

When my cataplexy onset in college, I was horrified! I was collapsing onto the ground around 40 times a day from laughing or feeling any other strong emotion. I thought I must have a brain tumor or something horrible to explain the severity of the symptom and its sudden appearance in my life.”

– Tatiana

Why Does Cataplexy Happen?

During dream sleep, also known as rapid eye movement (REM) sleep, the brain paralyzes voluntary muscles in a process called REM muscle atonia to prevent us from acting out dreams and potentially injuring ourselves.

For people with narcolepsy, research suggests that certain emotional triggers cause the brain to activate REM muscle atonia while awake, paralyzing the muscles as it would during the REM sleep phase. This is likely due to a deficiency of orexin (also known as hypocretin), a neurotransmitter in the brain which regulates timing of sleep and wakefulness.

See our Science of Narcolepsy resource for an in-depth explanation of the neurological pathways that are activated during a cataplexy episode.

Some features of wakefulness can creep into the night, and some features of the night can intrude into wakefulness. Cataplexy can be thought of as the body doing the right thing at the wrong time.”

– Dr. Katie Sharkey

Cataplexy Evaluation and Treatment

Specialists generally rely on a combination of assessment tools to evaluate cataplexy including:

• Descriptions and history provided by the person and any supporters who have witnessed the episodes
• Questionnaires
• A sleep study involving overnight polysomnography (PSG) and the multiple sleep latency test (MSLT). If characteristics of narcolepsy are observed during the sleep study and the person describes cataplexy, the specialist can be more confident of a narcolepsy type 1 diagnosis.

Many people take treatment to reduce the frequency and severity of cataplexy. Common treatment options for cataplexy currently include oxybate therapies, histamine-directed therapy, and antidepressants.

See our New + Upcoming Treatments resources for more on the latest treatment options for narcolepsy and cataplexy.

Managing Cataplexy Episodes

Managing cataplexy varies person-to-person. Here are some tips from our panelists and the community: 

• Inform others how you’d like them to respond if a cataplexy episode occurs.
• Be aware of your surroundings.
• Find support for your body first, then explain the situation to others if necessary.
• During a cataplexy episode, try to stay calm and remember that it will pass.
• Pay attention to the emotions and situations that frequently trigger cataplexy, and identify which muscle groups are usually affected.
• It’s okay to keep boundaries with people in your life.
• Social support can be helpful in processing the experiences and emotions that come along with cataplexy.
• Communicate with your doctor if episodes are especially severe or frequent.

Coping with Cataplexy: Listen or Watch!

The Coping with Cataplexy broadcast originally aired on August 24, 2023.

Meet Our Guests

Dr. Katie Sharkey, MD, PhD is a sleep medicine physician and associate professor of Medicine and of Psychiatry & Human Behavior at the Alpert Medical School of Brown University. She earned her MD-PhD and completed a combined internal medicine and psychiatry residency at Rush University in Chicago, IL. Dr. Sharkey is a recognized expert on sleep and circadian rhythms, particularly as they relate to mood regulation and women’s health. She is an Associate Editor of Behavioral Sleep Medicine and Frontiers in Sleep, and serves on the editorial board of Sleep Health.

Katie Mehin is a project analyst for an educational tech company specializing in empowering adult learners to thrive in higher education. Outside of work, she enjoys spending time with her husband and two elementary-age sons. She was diagnosed with narcolepsy with cataplexy as a college sophomore, almost five years after the initial onset of her symptoms. As a trained speaker with Project Sleep’s Rising Voices program, Katie hopes to spread awareness of this neurological sleep disorder to help others in obtaining more timely diagnoses.