What is cataplexy?
Cataplexy attacks occur when someone suddenly develops weakness in their muscles, and they lose voluntary muscle control. Some people develop muscle weakness alone, but others may move their arms and legs in a jerky motion, making people think this is a seizure. Cataplexy can also be mild and barely noticeable, or severe, because you can’t stay standing or sitting upright and your body collapses. It’s important to note that people who have a cataplexy attack don’t lose consciousness, however.
Cataplexy is often related to excessive daytime sleepiness caused by narcolepsy, a sleep disorder that makes it difficult to control sleep/wake cycles. Some people with narcolepsy will experience several episodes of cataplexy, while others may only have it once or twice. It can affect both adults and children.
Cataplexy is a serious condition; it can occur at any time without warning. If this happens while driving or in situations where a fall can cause serious injury, it can be life-threatening.
Treatment for cataplexy involves treating narcolepsy itself.
What are the symptoms of cataplexy?
Cataplexy symptoms range from very mild to severe. You may experience:
- Minor weakness in some muscles, such as a drooping eyelid or a tremor in a finger
- Jerking movements similar to a seizure
- Full body collapse
What causes cataplexy?
Cataplexy can be triggered by excessive daytime sleepiness caused by narcolepsy. It can be the first symptom of narcolepsy, although it can easily be mistaken for a seizure, especially if the body twitches or jerks at the same time.
Strong, sudden emotions—good and bad—can also cause cataplexy. These emotions include joy from a pleasant surprise, fright, or distress from an argument. Stress or physical exertion are not causes, however.
Other causes include:
- Brain injury. Some brain injuries, including strokes and tumors, can cause cataplexy.
- Autoimmune diseases or disorders that trigger type 1 narcolepsy
- Other disorders, such as Prader-Willi syndrome, Niemann-Pick type C disease, and Angelman syndrome
Although rare, some medications, such as suvorexant (used for insomnia) can cause cataplexy.
How do doctors diagnose cataplexy?
About 10% of people who have a cataplexy attack have narcolepsy, so your doctor may begin the diagnostic process by testing you for the sleeping disorder.
You will be asked to fill out a sleep questionnaire about how often you sleep, how long you sleep, and how well you sleep. You may also be asked to keep a sleep journal for a few weeks.
Your doctor may recommend a sleep test, called a polysomnogram. For this type of sleep study, you have wires attached to your scalp and elsewhere on your body to monitor you while you sleep. A sleep latency test is also an option. For this test, you nap throughout the day every few hours so the doctor can see how quickly you fall asleep each time.
Other cataplexy tests your doctor may request include blood tests and brain MRI (magnetic resonance imaging). These tests can help discover or rule out possible causes of cataplexy. Your doctor may refer you to a neurologist or sleep medicine doctor for diagnosis and treatment.
What are the treatments for cataplexy?
Cataplexy treatment depends on its cause, if the cause is known. The important thing is eliminating or reducing attacks, so they don’t occur in a dangerous situation.
If cataplexy is caused by narcolepsy, the attacks may go away with narcolepsy treatment. This is often with stimulant medications, such as modafinil or armodafinil.
Most commonly, cataplexy itself is treated with antidepressant medications, which are also used for other health issues aside from depression. Sodium oxybate, available only through restricted drug programs because of its potential for abuse, is another drug that may help manage severe cataplexy attacks.
Lifestyle remedies for cataplexy
Since cataplexy can be triggered by excessive daytime sleepiness, you may be able to reduce attacks through some lifestyle changes, such as improving your sleep hygiene. Start with these tips:
- Follow a strict go-to-bed/rise schedule, even on days off and vacation.
- Avoid anything stimulating in the evening, such as caffeine and smoking.
- Avoid alcohol. While alcohol may make you sleepy, it affects how well and long you sleep.
- Exercise during the day, but not within a couple of hours of bed.
- Make your bedroom a sleep sanctuary, banning electronics and keeping it cool with a fan or air conditioner if necessary.
- Develop a relaxing bedtime routine to perform every night. This tells your brain and body it’s time to sleep.
- Take short naps in the day if absolutely necessary, to prevent severe exhaustion when you go to bed at night.
How does cataplexy affect quality of life?
If your cataplexy attacks seem to occur as the result of strong emotions, take care to avoid situations where you might experience extreme highs and lows, such as a scary, sad or violent movie. Ask your friends to ensure there is a safe space for you, like a nearby chair.
You may find yourself avoiding situations that could provoke an attack. This not only affects you, but those around you who may not understand. You’ll carry less of a burden if you open up to trusted friends and family members about your condition so they can understand what you’re going through. Ask your doctor or nurse practitioner for reading materials on cataplexy (and narcolepsy if the condition applies to you), or direct your loved ones to online resources.
You may also need to be careful about your physical surroundings, to reduce the risk of serious injury should you have a cataplexy attack. In most states, you are not required to surrender your driver’s license; however, it would be prudent to avoid driving alone. Recruit your friends, family and coworkers to be aware as well.