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There are two main types of narcolepsy.1 To help you understand the difference, MyNarcolepsyTeam spoke with Dr. Luis Ortiz, a sleep medicine specialist from Johns Hopkins All Children’s Hospital in Florida. Dr. Ortiz not only cares for people with narcolepsy, he also lives with type 1 narcolepsy.
“I always wanted to go into the medical field,” Dr. Ortiz told MyNarcolepsyTeam. “But it wasn’t until I was diagnosed with narcolepsy and needed to develop my own knowledge base that I realized I wanted to practice sleep medicine.” Dr. Ortiz said having this in common with people he treats has helped shape how he practices medicine.
Keep reading to learn more about the two main types of narcolepsy. If you have questions, talk to your healthcare provider.
Type 1 vs. Type 2 Narcolepsy: 2 Signs To Tell the Difference
00:00:00:00 - 00:00:26:22
Dr. Luis Ortiz
There are two types of narcolepsy, type 1 and type 2. Which type do you have, and can your type change? Let's dig in deeper. Hi, I'm Dr. Luis Ortiz. I’m a sleep medicine physician, and I’m a person living with narcolepsy. Today, I’ll break down the key differences between type 1 versus type 2 narcolepsy. Narcolepsy type 1 includes cataplexy, a sudden muscle weakness triggered by emotions like laughter, happiness, and excitement.
00:00:26:24 - 00:00:50:14
Dr. Luis Ortiz
If you’ve ever felt your knees buckle in response to something like running into a surprise guest, that could be a sign of cataplexy. Sometimes it can be severe, like falling to the ground, but often it’s subtle, like dropping something or making a weird face when you laugh. Narcolepsy type 2 patients don’t have cataplexy. You’ll still have sudden episodes of excessive sleepiness, but without the muscle weakness.
00:00:50:16 - 00:01:17:20
Dr. Luis Ortiz
The other narcolepsy symptoms, specifically disrupted nighttime sleep, sleep paralysis, and hallucinations can occur in both type 1 and type 2. Another key difference can be found in your brain. Type 1 narcolepsy is caused by low or absent levels of hypocretin, also called orexin, a neurotransmitter that helps regulate sleep and wake cycles. On the other hand, type 2 narcolepsy might have normal or slightly low levels of hypocretin.
00:01:17:22 - 00:01:44:07
Dr. Luis Ortiz
It’s difficult to measure hypocretin or orexin, and most of the time, narcolepsy type is diagnosed upon symptoms. The cause of type 2 is unclear. It’s not known if it stems from a single issue, like loss of orexin in type 1 narcolepsy, or due to various biological conditions. So can your condition or diagnosis change? Sometimes people diagnosed with type 2 may later develop cataplexy or realize that they’ve had cataplexy all along,
00:01:44:10 - 00:02:02:10
Dr. Luis Ortiz
switching their diagnosis from type 2 to type 1. If you have type 2, it’s important to keep an eye on your symptoms over time, especially if you notice anything strange in response to emotions. No matter what your type, you need to be proactive about your narcolepsy. Always ask yourself, “Are there things I would like to do that I can’t do?”
00:02:02:12 - 00:02:17:08
Dr. Luis Ortiz
It’s important to ask your doctor about the latest medications if you feel like your sleepiness and other narcolepsy symptoms are not adequately controlled, so that you can lead the fullest life possible. Learn more and connect at MyNarcolepsyTeam.com.
The main difference between narcolepsy type 1 and narcolepsy type 2 is cataplexy, or a sudden loss of muscle control. People with narcolepsy type 2 do not experience this symptom.1
“If you’ve ever felt your knees buckle in response to a surprise, that could be a sign of cataplexy,” Dr. Ortiz explained. “Sometimes, it can be severe, like falling to the ground, but often it’s subtle — like dropping something or making a weird face when you laugh. Type 2 narcolepsy has no cataplexy. You’ll still have sudden episodes of excessive sleepiness but without the muscle weakness.”1
Cataplexy episodes are often triggered by laughter, happiness, excitement, and other strong emotions. Episodes can be mild or severe and generally last a few seconds or minutes. Most episodes go away on their own.1
Different Types, Different Causes
Dr. Ortiz said another key difference between the two main types of narcolepsy involves their causes. “Type 1 narcolepsy is caused by low or absent levels of hypocretin, also called orexin,” he explained. Hypocretin is a brain chemical that helps you stay awake.1 “The cause of type 2 narcolepsy is unclear.”2
Type 1 and type 2 share some of the same telltale symptoms of narcolepsy, like excessive daytime sleepiness (EDS). People with both types of narcolepsy often experience poor quality sleep, and may also experience hallucinations or paralysis while going to sleep or waking up.1
“Both types of narcolepsy are defined by severe daytime sleepiness that interferes with functioning well in life,” Dr. Ortiz said.3 The U.S. Food and Drug Administration (FDA) has approved several medications to treat EDS in narcolepsy. Some of these medications are also approved to treat cataplexy for those who have type 1 narcolepsy.2,3
Dr. Ortiz said your narcolepsy diagnosis can change if you develop new symptoms or tell your doctor about a symptom you didn’t realize you’d had all along.
“Sometimes, people diagnosed with type 2 may later develop cataplexy or realize they have cataplexy, switching their diagnosis to type 1,” Dr. Ortiz said. “If you have type 2, it’s important to keep an eye on symptoms over time, especially if you notice anything strange in response to emotions.”4
Narcolepsy is more than just feeling sleepy. This chronic medical condition can affect your mental health and quality of life.4
“No matter your type, you need to be proactive about your narcolepsy,” Dr. Ortiz said. “Ask yourself, ‘How am I being limited by my narcolepsy? Are there things I would like to do that I can’t do?’”
Dr. Ortiz also recommends asking your care team about new narcolepsy treatment options: “It’s important to ask your doctor about the latest medications if you feel like your sleepiness and other narcolepsy symptoms are not adequately controlled.”
Luis E. Ortiz, M.D.
is a sleep medicine physician at Johns Hopkins All Children’s Hospital and an assistant professor of pediatrics at the Johns Hopkins School of Medicine.
Learn more about him here.
Suzanne Mooney
writes about people, pets, health and wellness, and travel.
Learn more about her here.
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