Some people have an episode of cataplexy just once or twice in their lives. Others have symptoms up to 20 times a day. An episode usually lasts just a few minutes and goes away on its own.
Strong, feel-good emotions tied to things like laughter, joking, and pleasant surprises tend to trigger cataplexy. Negative emotions like frustration, anger, stress, or fear can set it off, too, but less often. When something triggers your cataplexy, you might feel the weakness build up in your affected muscles for several seconds before it fully kicks in.
What Are the Symptoms?
Cataplexy symptoms can range from mild to severe. It’s more common to have mild signs. Those can involve a brief feeling of minor muscle weakness in your face, neck, or arms. For example, your eyebrows might droop, and your speech might slur.
A severe bout of cataplexy could make you slump down and lose your ability to move, talk, or keep your eyes open for a few minutes. You remain conscious while it’s happening. It’s highly unlikely that you’d collapse and fall flat on your face, though.
When a child has cataplexy, they could show signs like:
They may have mild weakness in their muscles for hours after the episode, too.
What Causes It?
Experts are still looking into that question. But most people who have narcolepsy with cataplexy show a sign that doctors can spot with tests: a loss of brain cells that make a hormone called orexin, also called hypocretin. That hormone plays a key role in the sleep-wake cycle.
If you have narcolepsy with cataplexy (also known as type 1 narcolepsy), that loss of orexin may be tied to:
- Your genes
- An autoimmune disorder
- A brain injury
It’s also possible to have cataplexy without narcolepsy. When that happens, cataplexy is linked to things like:
How Is It Diagnosed?
There’s no specific test to spot cataplexy, so doctors usually start by asking you about your symptoms. They may ask you questions like:
- How often do you have symptoms, and how long do they last?
- What seems to trigger them?
- Which muscles do your symptoms affect?
- Do you take any medications?
- What’s your sleep routine like? Are you tired during the day?
If your doctor thinks you might have cataplexy, they may try to confirm it by doing tests that track your sleep overnight and check on how sleepy you are during the day.
What Are the Treatments?
Medications help some people have fewer episodes of cataplexy. Some of them are:
A very small study suggests that a drug called tropatepine shows promise when standard meds don’t improve cataplexy. More research is needed.
Talk to your doctor. The right medication for you depends on the underlying reason for your cataplexy.
What Changes Can I Make?
Learn your triggers. Once you know which situations tend to bring on your cataplexy symptoms, you can avoid them or be better prepared to manage them.
Work with your care team. They can help you get your symptoms under control with treatment. They can also help you plan what to do if you have cataplexy during situations like driving and swimming.
Talk to your employer or school. Show them a doctor’s note explaining what cataplexy is and how it affects you. You could ask them for accommodations like:
- A safe, cushioned space to lie down if needed
- Naps or breaks
- A schedule that lets you work when you’re most alert
Join a support group. You could get an emotional boost and practical tips from people living with narcolepsy, cataplexy, or both. You can search online for local or virtual support groups, or ask your doctor if they can point you to one.
Make healthy lifestyle changes. Many people with cataplexy say they have fewer episodes of it when they get enough sleep. A few ways to get better ZZZs are:
- Don’t drink alcohol or caffeine, have a big meal, or smoke within a few hours of bedtime. (If you smoke, get help quitting.)
- Turn off electronics 30-60 minutes before bedtime. Do something relaxing to wind down, like reading or deep breathing.
- Go to bed and wake up at the same times every day.
- Get daily exercise.