Cataplexy
- Cataplexy is a disorder characterized by sudden muscle weakness during waking time, often triggered by strong emotions. It occurs frequently with narcolepsy.
- Episodes vary in severity and may include symptoms ranging from twitching facial muscles and buckling knees to temporary paralysis or collapse.
- People experience cataplexy differently, which makes diagnosis difficult.
- There’s no cure for cataplexy, but symptoms can often be managed with an individualized treatment plan involving a combination of prescription medications and lifestyle changes.
People with narcolepsy usually notice symptoms like excessive daytime sleepiness or sudden sleep attacks, but another possible symptom, cataplexy, often goes undetected. Cataplexy refers to sudden muscle weakness, usually triggered by strong emotions. While it often occurs with narcolepsy, it’s also sometimes linked to other disorders.
Below, we’ll explain cataplexy, its relation to narcolepsy, its symptoms in adults and children, what causes it, and how to diagnose and treat it.
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What Is Cataplexy?
Cataplexy is a sudden muscle weakness or temporary paralysis that occurs while a person is awake. Strong emotions trigger cataplexy , and it usually lasts from a few seconds to several minutes.
The triggering experiences are usually positive, like laughter, witty conversations, and pleasant surprise. Episodes may also be triggered by anger, but rarely by stress, fear, or physical exertion.
Cataplexy and Narcolepsy
Narcolepsy is a sleep disorder characterized by excessive daytime sleepiness, sleep paralysis, hallucinations, and, in some cases, cataplexy. There are two major types of narcolepsy: type 1 and type 2 , differentiated by whether or not a person experiences cataplexy.
- Type 1 (narcolepsy with cataplexy): People diagnosed with type 1 narcolepsy often experience episodes of cataplexy. Episodes of cataplexy typically begin after the onset of excessive sleepiness . This type of narcolepsy is caused by low levels of a neurotransmitter called orexin, or hypocretin.
- Type 2 (narcolepsy without cataplexy): People with type 2 narcolepsy don’t experience cataplexy. Unlike type 1 narcolepsy, type 2 doesn’t involve low levels of orexin, and its causes aren’t well understood.
Cataplexy Symptoms
Episodes of cataplexy usually involve momentary sensations of weakness, often in the facial or neck muscles. Unlike other conditions that cause a loss of muscle control, like fainting or seizures, people experiencing cataplexy remain conscious and aware.
During mild episodes, symptoms include:
- Head or jaw dropping
- Knees buckling
- Slurred speech
- Facial twitching
- Eyelids drooping
- Losing grip or dropping objects
More severe episodes may involve:
- Temporary paralysis
- Collapse
- Inability to speak
Cataplexy in Children
Cataplexy may look different in children compared to adults . Children often show symptoms in their gait, or style of walking, and have attacks that involve the muscles of the face.
Episodes in children may not be triggered by emotional events. As they get older, cataplexy in children changes to mirror cataplexy in adults .
Cataplexy Causes
While the cause of cataplexy is still being investigated, most people with cataplexy show a loss of certain brain cells that produce the hormone orexin. Orexin plays an important role in maintaining sleep-wake stability.
Much of what we know about the relationship between orexin and cataplexy comes from type 1 narcolepsy research. This research suggests that several factors may contribute to a loss of orexin in people with type 1 narcolepsy.
- Autoimmune disorders: A loss of cells that produce orexin may be related to dysfunction in the immune system. In autoimmune disorders, the body attacks its own healthy tissue by mistake. There’s increasing evidence that type 1 narcolepsy may be caused by the immune system attacking cells that produce orexin after exposure to a virus with similar surface proteins.
- Family history: While potential genetic links aren’t fully understood, around 10% of people with type 1 narcolepsy have a close relative with similar symptoms. More than 85% of narcolepsy patients with cataplexy share the same human leukocyte antigen (HLA) allele, HLA DQB1*0602. Comparatively, this allele is found in 12% to 38% of the general population.
- Brain injury: Some people with type 1 narcolepsy lose orexin-containing brain cells due to brain injuries, tumors, and other acquired diseases.
Cataplexy isn’t always linked to narcolepsy. Around 30% of cataplexy cases are related to other disorders, including:
- Niemann-Pick disease type C (NPC): NPC is a rare genetic disorder characterized by the body’s inability to transport lipids such as cholesterol within cells, leading to accumulations of fatty substances in body tissues. People diagnosed with NPC may experience a variety of neurological symptoms , including cognitive impairment, dementia, and cataplexy.
- Prader-Willi syndrome: Prader-Willi syndrome is a genetic condition that begins in childhood, leading to early feeding challenges, delayed growth and development, and an insatiable appetite. In this condition, both excitement and food may cause cataplexy .
- Angelman syndrome: This genetic disorder affects the nervous system , leading to intellectual disability, speech impairment, and problems with movement and balance. Cataplexy has been reported in many children with this disorder.
In rare cases, cataplexy can also be a side effect of medications. Suvorexant, a medication for insomnia that blocks orexin, can cause cataplexy in rare cases. Two newer medications in this class, lemborexant and dariderexant, may pose the same risk. Fortunately, cataplexy typically disappears after people stop taking these medications.
Diagnosing Cataplexy
Diagnosing cataplexy can be a challenge. There isn’t a specific test to detect cataplexy, although it has been suggested that video recordings of episodes may be a helpful tool . Also, symptoms, triggers, frequency, and severity can vary widely. Cataplexy is usually diagnosed based on an interview with patients and their families .
In an interview, doctors are looking for the classic signs of cataplexy. A doctor may ask about how often a person experiences episodes and how long they last, triggering events, and which muscles are affected. The doctor may also ask about the medications you are taking, your sleep routine, and any other associated symptoms, such as daytime sleepiness.
Doctors will also likely examine your medical history and perform tests to rule out other potential causes of muscle weakness such as seizure disorders, fainting, or other neurological conditions.
If a doctor suspects cataplexy and/or narcolepsy type 1, they may order a sleep study, such as a polysomnography or multiple sleep latency test (MSLT). They could also ask for cerebrospinal fluid (CSF) testing to measure orexin levels, which are typically low in people with type 1 narcolepsy.
Cataplexy Treatment
Although the loss of orexin associated with cataplexy is irreversible, treatment can help to decrease episodes of cataplexy for many people. Currently, research suggests that medication is the most effective treatment. The most commonly prescribed medications are antidepressants or sodium oxybate .
Treatment usually involves a specific combination of medications, sometimes with multiple types of antidepressants. Just as the symptoms and severity of cataplexy vary, doctors find that most people require an individualized treatment plan. Finalizing this plan may involve some trial and error as doctors evaluate how the patient responds to different combinations of medicine.
Tips for Living With Cataplexy
Cataplexy episodes typically last a couple of minutes and resolve on their own. Between episodes, it may be helpful to take steps to ensure that the environment is safe for when episodes arise.
- Creating a safe environment: Sudden muscle weakness can make ordinary activities more dangerous. Talk with doctors, nurses, and others who experience cataplexy to learn how to plan for attacks. Special attention should be paid to activities like swimming, driving, and climbing.
- Talk to teachers and bosses: Employers and school administrators can be helpful in making special accommodations for people who experience cataplexy. These accommodations may involve making time for nap breaks, changing the work or school environment so that it’s safer, and allowing work to be done when a person feels most alert.
- Find support: Experiencing cataplexy can be emotionally draining and socially isolating. Talking to others who are living with cataplexy can help with practical tips and emotional support. Since cataplexy most often occurs in people diagnosed with narcolepsy, finding narcolepsy support resources may be a helpful first step. U.S.-based patient support organizations include the Narcolepsy Network and the Hypersomnia Foundation.
Improving Sleep Hygiene
For many people who experience cataplexy, lifestyle changes are an important aspect of managing symptoms. While a clear link between sleep deprivation and cataplexy hasn’t been established, many people report that getting sufficient sleep leads to having fewer episodes .
Improving sleep hygiene is an easy and effective way to improve health and reduce the risks of sleep loss. Sleep hygiene involves increasing habits that promote sleep and decreasing habits that interfere with sleep. Here are some tips for improving your sleep hygiene.
- Prioritize sleep: Make getting sufficient, quality sleep a priority. Go to bed and get up at the same time every day, even on weekends. Maintaining a consistent sleep schedule helps your body align with natural sleep rhythms.
- Improve daytime habits: Daytime activities can impact sleep. Be sure to get regular exercise and natural light every day. Avoid smoking, alcohol, caffeine, and large meals within a few hours before bedtime.
- Establish a nighttime routine: Give yourself at least 30 to 60 minutes to wind down before bed. Turn off electronics and find a relaxing activity like reading, stretching, or taking a bath. Relaxation exercises can help to soothe your nerves and lull you into a better night’s sleep.
Frequently Asked Questions
What does cataplexy look like?
Cataplexy causes temporary episodes of sudden muscle weakness which can resemble a seizure, stroke, or fainting spell. Visible symptoms may include face twitching, drooping eyelids, knees buckling, or in severe cases, paralysis and collapse.
Can cataplexy be cured?
There’s currently no cure for cataplexy, but there are treatment options to help reduce and manage symptoms. These include certain types of antidepressants. Lifestyle changes, such as improving sleep hygiene that improve narcolepsy symptoms, may also be beneficial. Cataplexy episodes may decrease with age.
Can cataplexy cause seizures?
Cataplexy doesn’t cause seizures, but its symptoms may sometimes look like a seizure. Cataplexy causes sudden muscle weakness that can result in twitching, temporary paralysis, or sudden collapse. Unlike seizures though, people are completely conscious and awake during cataplexy episodes and don’t experience memory loss.
Can cataplexy get worse?
Cataplexy is a lifelong disorder that may change in severity and frequency over time. It may become more severe during major life changes or periods of high emotion, as these often trigger episodes. That said, many people report that cataplexy symptoms become less frequent and severe over time.
Can people with cataplexy drive?
People with narcolepsy and cataplexy are allowed to obtain personal driver’s licenses, but they’re at much higher risk for accidents and should take necessary precautions when driving.
The Federal Motor Carrier Safety Administration (FMCSA) recommends disqualifying people with narcolepsy from obtaining commercial licenses.
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Jay Vera Summer is a writer, editor, and wellness coach. She holds a Bachelor's of Science in psychology and Master's degrees in both writing and public policy.
Brandon R. Peters, M.D., FAASM, is a double board-certified neurologist and sleep medicine specialist and fellow of the American Academy of Sleep Medicine who currently practices at Virginia Mason Franciscan Health in Seattle. He is a leading voice in sleep medicine who works at the cutting edge of medicine and technology to advance the field.
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