Cataplexy

What is cataplexy?

Cataplexy happens when strong emotions (like laughter, excitement or anger) trigger sudden, brief muscular weakness while you’re awake. It’s one of the main symptoms of narcolepsy. Narcolepsy is a chronic (lifelong) sleep disorder that causes an urge to fall asleep suddenly during the daytime that’s almost impossible to resist. It affects children and adults. Cataplexy is also a symptom of certain very rare genetic conditions.

Muscle weakness in cataplexy episodes can range from mild to severe. For example, you may have weakness in only a few muscles, like those in your face leading to a sagging jaw or mild head drop. In severe cases, you could lose total control of your muscles and collapse. But people remain conscious (awake) during a cataplexy attack, unlike in fainting (syncope) and seizures.

Attacks usually last seconds to a few minutes and instantly go away on their own. The frequency of attacks varies. Some people have several cataplexy attacks a day, while others may have them only a few times a year.

What’s the difference between cataplexy and narcolepsy?

Cataplexy is a symptom of narcolepsy. There are two main types of narcolepsy. Whether or not you have cataplexy separates the two:

• Narcolepsy type 1: This form involves cataplexy. People with this type have low levels of a specific neurotransmitter (brain chemical) called orexin (hypocretin). They have cataplexy and excessive daytime sleepiness.
• Narcolepsy type 2: This form doesn’t involve cataplexy. People with this type usually have normal levels of orexin.

What does a cataplexy attack look and feel like?

Cataplexy can be difficult to identify because it can look like a seizure. But the key difference between the two is that you remain conscious during a cataplexy attack.

The muscle weakness tends to first affect the muscles in your face and neck and progress downward to your trunk and limbs. This can look like facial drooping and slurred speech (partial attacks) to collapse (complete attacks). Complete attacks are rare.

Most people can sense when an attack is coming on. The attacks typically go away completely within a few minutes without any lasting effects. People who experience cataplexy and know they’re having episodes have described them as “jelly attacks,” “zombie episodes” or “cabbaging.”

Cataplexy in children

Cataplexy attacks look a little bit different in children. Children are more likely to have facial, jaw and eyelid weakness. It may look like they’re in pain or disgusted (grimacing). Or they may have other abnormal facial movements and expressions. Some children stick out their tongues during an attack.

People tend to mistake cataplexy in young children for clumsiness, seizures, fainting or attention-seeking behavior. If your child’s behavior changes, it’s important to check in with their healthcare provider.

What are the causes of cataplexy?

Narcolepsy type 1 is the main cause of cataplexy. About 75% of people with narcolepsy experience cataplexy as a part of the condition.

More specifically, cataplexy happens due to a lack of a neurotransmitter called orexin, or hypocretin. This is a chemical that normally promotes wakefulness and leads to the suppression of rapid eye movement (REM) sleep.

During REM sleep, you experience muscle paralysis — this is normal and expected. If you lack orexin, experiencing intense emotion while you’re awake triggers certain areas of your brain. And without orexin, it leads to brief muscle paralysis — like you’d experience in REM sleep. This is cataplexy.

What usually triggers a cataplexy attack?

Strong emotions trigger cataplexy attacks. Negative emotions (like anger, fear or shock) are the most common triggers. Positive emotions (like laughter and excitement) can also trigger attacks.

How is cataplexy treated?

Medication is the main treatment for cataplexy. Wake-promoting therapy that helps treat narcolepsy often also helps cataplexy symptoms.

Medications that have U.S. Food and Drug (FDA) approval to treat cataplexy include:

• Sodium oxybate.
• Lower-sodium oxybate.
• Pitolisant.

Healthcare providers sometimes prescribe other medications for cataplexy. These are off-label, or non-FDA-approved, uses of the medications. They include:

• Fluoxetine or other selective serotonin-reuptake inhibitors (SSRIs).
• Venlafaxine or other serotonin and norepinephrine reuptake inhibitors (SNRIs).
• Clomipramine or other tricyclic antidepressants (TCAs).
• Solriamfetol.

Once you start treatment for cataplexy, it’s important to strictly follow your medication schedule. If you suddenly stop taking the medication, it can lead to severe cataplexy attacks.

Can I prevent cataplexy attacks?

You can’t always prevent cataplexy attacks. But many people with narcolepsy type 1 report that they’re more likely to experience attacks when they’re exhausted. Because of this, keeping a healthy sleep routine (sleep hygiene) may help to reduce the number of cataplexy attacks. Here are some tips:

• Go to sleep at the same time each night and get up at the same time each morning.
• Make sure your sleeping area is quiet, dark and at a comfortable temperature.
• Remove electronic devices, like TVs, computers and phones, from your sleeping area.
• Avoid large meals, caffeine and alcohol at least two hours before you go to sleep.
• Get in some physical activity during the day. It can help you fall asleep more easily at night.

How do I take care of myself if I have cataplexy?

While cataplexy episodes can be scary, they’re not dangerous as long as you have a safe place to collapse. Most people who experience cataplexy know their triggers and avoid them. Here are some ways to take care of yourself if you experience cataplexy:

• Stay safe: Sudden muscle weakness can make regular activities more dangerous, especially if you experience attacks daily. Talk with your healthcare team and others who experience cataplexy to learn ways to plan for attacks to keep yourself safe.
• Tell people about it: Be sure to let your loved ones and acquaintances know about your cataplexy attacks so they know what’s happening. Employers and school administrators can provide special accommodations for you.
• Find support: Experiencing cataplexy can take a toll on your mental and social health. Consider joining a support group for people with narcolepsy or cataplexy to be among people who understand what you’re going through. If cataplexy is causing significant distress, talk to your healthcare provider or a mental health professional, like a psychologist.

When should I see a healthcare provider for cataplexy?

If you think you or your child are having cataplexy attacks, it’s important to see your healthcare provider. They can do an evaluation to see if you have narcolepsy and recommend a treatment plan.