Cataplexy: Symptoms, Causes, and Treatments

A number of common sleep disorders are well known among the general public. However, cataplexy is one of the least known and is misdiagnosed or misinterpreted. Cataplexy is a sudden loss of muscle control while awake and is commonly associated with narcolepsy, a sleeping disorder.

Narcolepsy is a disorder that causes people to feel overwhelmingly drowsy or fall asleep without warning during the day. It’s estimated that up to 200,000 people in the US are impacted by narcolepsy, but the real numbers are likely higher since this disorder is commonly underreported.

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There are two types of narcolepsy — those experiencing cataplexy are categorized as having narcolepsy type 1. However, cataplexy is not always linked to narcolepsy and can instead be caused by other genetic diseases or as a side effect of certain medications.

Cataplexy is a complex, often misunderstood disorder that can greatly impact your daily life. It’s also often misdiagnosed. We’ll break down everything you need to know about cataplexy, its symptoms, treatment methods, risks, and tips for living with it.

What is Cataplexy and What Triggers It?

Cataplexy is often triggered by sudden, intense emotions, including:

• Laughter
• Stress
• Anger
• Excitement
• Even fear

When cataplexy strikes, you lose control of your voluntary muscles for a period of time. This typically impacts both sides of the body but can be isolated to only one.

Although cataplexy is often associated with other diseases or sleep disorders, such as narcolepsy, stroke, excessive daytime sleepiness (EDS), multiple sclerosis, head injuries, and more, it can occur on its own.

The cause of cataplexy is a bit of a mystery to the medical world. However, it has been linked to a decrease of neurons that produce hypocretin — a neuropeptide hormone that manages your energy expenditure, awakeness, appetite, and arousal.

A 2010 study found a loss of hypocretin is caused by an autoimmune response which leads to the production of trib 2 antibodies, which target and kill off hypocretin-producing neurons.

Symptoms of Cataplexy

Those with cataplexy tend to start experiencing symptoms between the ages of 7 and 25, but this disorder can strike at any time. Typical symptoms of cataplexy include:

• Twitching of the face
• Jaw tremors
• Drooping eyelid/s
• Difficulty speaking
• Involuntary tongue movements

Your head or jaw may also droop or become difficult to hold up. If you lose full control of your voluntary muscles, you may collapse. This is referred to as a cataplectic attack. Although you lose muscular control, you’ll remain awake and conscious. During this attack, your head will drop forward, your jaw will fall into your chest, and you may fall to the ground.

If you experience any of the above symptoms, finding a safe place to sit or lay down can help you avoid injuring yourself during a cataplectic attack.

Cataplectic attacks typically only last a few minutes (between 30 seconds and two minutes, on average). Some might only experience cataplexy a few times in their lifetime, while other sufferers may have attacks multiple times a day.

Why Narcolepsy Is Often Linked to Cataplexy

Narcolepsy and cataplexy are closely connected. Also called narcolepsy type 1, cataplexy is actually thought to be the same muscle paralysis you experience during REM sleep. If you experience excessive daytime drowsiness, as well as cataplexy, you could be diagnosed with type 1 narcolepsy.

Cataplexy also has many similarities to another symptom of narcolepsy, sleep paralysis. This disorder is typically found in narcoleptic sufferers (though you don’t have to experience narcolepsy to experience sleep paralysis).

Like cataplexy, you lose control of your voluntary muscles, but are often in a light sleep or on the edge of sleep when this occurs. It happens most often while falling asleep or waking up. Your eyes are also usually shut.

Other Causes of Cataplexy

Cataplexy can occur even if you do not have narcolepsy, but it’s less common. Typically, cases of non-narcoleptic cataplexy Verified Source National Library of Medicine (NIH) World’s largest medical library, making biomedical data and information more accessible. View source are associated with other, rare genetic diseases. These include:

• Niemann-Pick type C Disease
• Angelman Syndrome
• Norrie Disease
• Prader-Willi Syndrome
• Other rare autoimmune and genetic diseases

Non-narcoleptic cataplexy can also be caused as a side effect to some medications, including:

• Lamotrigine
• Clozapine
• Gamma-hydroxybutyrate

How Cataplexy is Diagnosed

This disorder is generally diagnosed once a patient begins realizing they are experiencing episodes of muscle immobility while awake. Experiencing excessive drowsiness during the daytime is also another indicator of cataplexy.

To officially diagnose cataplexy, a sleep study will be performed to review your brain activity while sleeping. A Multiple Sleep Latency Test (MSLT) may also be offered. An MSLT is done by prescribing a patient to take five naps over the course of one day. Ordering an MSLT the day after a sleep study can yield better insights into the quality of sleep obtained during the study.

Another way to diagnose cataplexy is to measure your hypocretin levels. Low levels could lead to a positive cataplexy diagnosis. Like narcolepsy, cataplexy can be difficult to diagnose (the median time frame for diagnosing narcolepsy Verified Source National Library of Medicine (NIH) World’s largest medical library, making biomedical data and information more accessible. View source is up to 9 years) and many sufferers are often misdiagnosed with seizure disorders.

Cataplexy Treatments

Cataplexy is a lifelong disease that can be managed with the right treatment plan. There is currently no cure for cataplexy, but there are multiple treatment options you can explore, from medications shown to reduce symptoms to incorporating lifestyle changes to decrease your chances of cataplectic episodes.

A combination of both methods may offer the best defense against cataplexy.

Medications

A few medications that can help treat the symptoms of cataplexy include:

• Antidepressants, like Clomipramine or selective serotonin uptake reinhibitors (SSRIs), like Prozac
• Xyrem, to treat daytime drowsiness
• Provigil (for non narcolepsy cataplexy) to decrease drowsiness
• Additional stimulants to help you remain alert and focused during the day

With any medication, it’s important to look out for possible adverse side effects. Antidepressant side effects could include high blood pressure, irregular heart rhythm, and impotence. Some stimulants also have side effects, like nervousness, shakiness, irregular heart rhythm, and sudden mood swings.

Xyrem also has potentially risky side effects, which include nausea, vomiting, dizziness, tremor, involuntary urination, and drowsiness.

Lifestyle Changes

There are factors you can change in your day-to-day life to help prevent cataplectic episodes, reduce their severity, or decrease your risk of injury. They include:

• Exercising regularly
• Maintaining a healthy diet and weight
• Creating a set sleep schedule and getting at least 7-8 hours of sleep per night
• Decreasing caffeine intake, particularly in the afternoon and evening
• Taking a daytime nap, if possible
• Avoiding driving or operating machinery (for narcoleptic cataplexy) until you speak to your doctor

Risks of Cataplexy

While cataplectic episodes are not dangerous to your body, the real risk of cataplexy is losing control of your muscles in a dangerous situation. Falling when crossing a busy street, landing on glass, or hitting sharp edges (like the corner of a table) can all be serious risk factors.

Although you can’t predict when cataplexy will strike, being aware of the first signs of symptoms and sitting somewhere safe until the episode is over is the best way to avoid harm.

Telling friends, family, and coworkers about your cataplexy can also ensure they’re on the lookout should you lose control of your muscles.

If you suffer from narcoleptic cataplexy, you’re also at risk of sleep deprivation consequences. Verified Source National Library of Medicine (NIH) World’s largest medical library, making biomedical data and information more accessible. View source This can include increased risk for:

• Cardiovascular disease
• Obesity
• Diabetes
• Depression
• Anxiety

Lastly, cataplexy can impact your quality of life when left untreated, leaving you feeling anxious or stressed about when your next episode might occur.

How Common is Cataplexy?

It is not known how prevalent cataplexy is, but in about 10 percent of all narcolepsy cases, Verified Source National Library of Medicine (NIH) World’s largest medical library, making biomedical data and information more accessible. View source cataplexy is the first symptom to appear. Many patients with cataplexy are often misdiagnosed with seizure disorders, which is one reason why cataplexy is hard to diagnose.

Can I Prevent Cataplexy?

Medications such as antidepressants provide the best defense against cataplexy and may reduce episodes. Making lifestyle changes can also lower your chances of cataplectic episodes. However, it is not possible to completely prevent cataplexy.

Tips for Living with Cataplexy

While cataplexy in itself is not dangerous, those with cataplexy can hurt themselves if they fall during an episode. Currently, medication such as antidepressants and sodium oxybate (Xyrem) are thought to be the best ways to manage symptoms and decrease episodes.

Improving your sleep health can be a great way to reduce symptoms of cataplexy and decrease cataplectic attacks. This involves going to sleep at the same time every night (including weekends), making your bedroom as calm and peaceful as possible, taking daytime naps, and exercising regularly.

Reducing your exposure to light and caffeine in the evenings can also help you to maintain healthy sleep habits.

Finding a support group for others dealing with narcolepsy or cataplexy may also help answer any questions you have about your disorder while allowing you to share stories and advice with other sufferers.

Frequently Asked Questions

What happens during cataplexy?

Cataplexy is a sudden attack of muscle weakness that is triggered by strong emotions, such as joy or fear. During a cataplexy attack, your head may droop, parts of your face may feel slack, and your knees may go weak. An attack can even affect the whole body, causing you to suddenly fall down.

What is the difference between narcolepsy and cataplexy?

Narcolepsy can occur with and without cataplexy, so the conditions aren’t necessarily interchangeable. Narcolepsy without cataplexy is generally less severe, though patients still experience the characteristic sleepiness.

Conversely, cataplexy without narcolepsy is often linked to rare genetic diseases. This is why it’s most prominently associated with narcolepsy.

Can you drive if you have cataplexy?

Like narcolepsy, cataplexy can raise concerns Verified Source Harvard Health Blog run by Harvard Medical School offering in-depth guides to better health and articles on medical breakthroughs. View source about a person’s ability to drive. Even a brief cataplexy attack can cause a person to lose control of their vehicle, which can have dire consequences. Speaking with your doctor can help you understand the risks of driving with cataplexy and what precautions you should take.

How do you know if you have cataplexy?

Cataplexy feels like sudden temporary muscle weakness, with parts of your body going slack or twitching without an obvious cause. If this sounds familiar to you, we recommend speaking with your doctor. They may diagnose you with cataplexy after performing a full physical examination to eliminate other potential causes and conditions.

You may also have to fill out a written evaluation like the Stanford Narcolepsy Questionnaire or the Epworth Sleepiness Scale. Lastly, you may need to undergo a sleep study to allow a specialist to monitor your brain and muscles as you sleep.

How long can cataplexy last?

Cataplexy episodes tend to not last long, with some cataplexy attacks lasting only a few seconds. Some attacks may stretch out to a few minutes, though most are less than 2 minutes long. Once the attack ends, the muscles are quick to resume normal function.

Conclusion

Cataplexy is a sudden loss of muscle control similar to REM sleep and is typically associated with narcolepsy. It may even be referred to as narcolepsy type 1. However, cataplexy can occur without a narcoleptic diagnosis.

Regardless of its source, cataplexy can be managed with medication, improved sleep health, and a support group.