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Answers to frequently asked questions about narcolepsy type 1
NT1 is characterized by 5 symptoms1,5:
- Excessive daytime sleepiness (EDS): persistent sleepiness, tiredness, or fatigue that can return quickly after sleep or naps
- Cataplexy: the sudden and temporary loss of muscle tone
- Disrupted nighttime sleep: poor sleep quality due to a lack of sleep continuity
- Hallucinations: vivid, dreamlike states (auditory or visual) that happen when falling asleep or immediately when waking up
- Sleep paralysis: the inability to move when falling asleep or immediately after waking up, which is caused by the intrusion of rapid eye movement (REM) sleep into the wake state
Cataplexy—the sudden and temporary loss of muscle tone—is a hallmark symptom of narcolepsy type 1 (NT1). It can happen any time that rapid eye movement (REM) sleep intrudes into the awake state and can be brought on by laughter or strong emotions, such as elation or anger. Cataplexy can be localized, such as to the limbs, head, or neck, or affect the entire body.6
Manifestations of cataplexy can be different in each person, especially between children and adults. Some people with narcolepsy type 2 (NT2) will develop cataplexy later in their disease, making the identification of this symptom critical, but difficult.6
The hallmark symptoms of NT1—excessive daytime sleepiness (EDS), cataplexy, disrupted nighttime sleep, hallucinations, and sleep paralysis—have been shown to negatively affect patients’ quality of life. The effects of NT1 can extend across a range of normal daily functioning, including1,7-9:
- Not feeling well rested and refreshed
- Difficulty enjoying everyday activities, like exercise
- Struggling to overcome the cognitive impairment that makes work or school difficult
- Trouble building or maintaining relationships
- Difficulty managing everyday responsibilities, like parenting, cooking, cleaning, and self-care
Narcolepsy type 1 is thought to be caused by a disruption of orexin signaling, which regulates the sleep-wake cycle. Orexin, also known as hypocretin, is a neuropeptide released by orexinergic neurons located in the hypothalamus. It is responsible for stabilizing the sleep-wake cycle. Orexin neuropeptides project deep throughout the brain to regions involved in cognition and attention, mood, muscle tone, and energy.2,3,5
Orexin, also known as hypocretin, is a neuropeptide released by orexinergic neurons located in the hypothalamus. It is responsible for stabilizing the sleep-wake cycle. Orexin neuropeptides project deep throughout the brain to regions involved in cognition and attention, mood, muscle tone, and energy.2,3,5
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References
1. Krahn LE, Zee PE, Thorpy MJ. Current understanding of narcolepsy 1 and its comorbidities: what clinicians need to know. Adv Ther. 2022;39(1):221-243. doi:10.1007/s12325-021-01992-4 2. Toor B, Ray LB, Pozzobon A, Fogel SM. Sleep, orexin and cognition. Front Neurol Neurosci. 2021;45:38-51. doi:10.1159/000514960 3. De Luca R, Nardone S, Grace KP, et al. Orexin neurons inhibit sleep to promote arousal. Nat Commun. 2022;13(1):4163. doi:10.1038/s41467-022-31591-y 4. Lipford MC, Ip W, Awasthi S, et al. Demographic characteristics and comorbidities of patients with narcolepsy: a propensity-matched cohort study. Sleep Adv. 2024;5(1):zpae067. doi:10.1093/sleepadvances/zpae067 5. Mahoney CE, Cogswell A, Koralnik IJ, Scammell TE. The neurobiological basis of narcolepsy. Nat Rev Neurosci. 2019;20(2):83-93. doi:10.1038/s41583-018-0097-x 6. Szabo ST, Thorpy MJ, Mayer G, Peever JH, Kilduff TS. Neurobiological and immunogenic aspects of narcolepsy: implications in pharmacotherapy. Sleep Med Rev. 2019;43:23-36. doi:10.1016/j.smrv.2018.09.006 7. Maski K, Steinhart E, Williams D, et al. Listening to the patient voice in narcolepsy: diagnostic delay, disease burden, and treatment efficacy. J Clin Sleep Med. 2017;13(3):419-425. doi:10.5664/jcsm.6494 8. Ortiz LE, Morse AM, Krahn L, et al. A survey of people living with narcolepsy in the USA: path to diagnosis, quality of life, and treatment landscape from the patient's perspective. CNS Drugs. 2025;39(suppl 1):S23-S36. doi:10/1007/s40263-024-01142-8 9. Davidson RD, Biddle K, Nassan M, Scammell TE, Zhou ES. The impact of narcolepsy on social relationships in young adults. J Clin Sleep Med. 2022;18(2):2751-2761. doi:10.5664/jcsm.10212
I really beat myself up over dropping my phones and breaking them. So I call it the cataplexy tax. Every cell phone I've ever owned I have dropped. Narcolepsy type 1 is a rare neurological disorder that affects your wake and sleep cycles. My narcolepsy type 1 comes with something called brain fog. The way I would describe it would be like a hazy feeling. Not feeling totally awake. Not feeling 100% aware. Kind of living in a daze.
My name is Casey. I have narcolepsy type 1. If I had to guess when my symptoms of narcolepsy type 1 started, I would say I was probably 13 or 14. I was always tired or sleepy during the day. But I was always told it was just contributed to me being a teenager.
I was diagnosed when I was 17 years old, but I was never told that I was diagnosed. I finally found out about it when I was 32. I was putting together a medical record book for my doctors. I stumbled across the word narcolepsy. That was a pretty big surprise. At least now I had a word to describe my feelings.
So orexin is in charge of your sleep-wake cycles. It's a neuropeptide. That's what people with narcolepsy type 1 with cataplexy are deficient in. Even though I do take medications, I still experience excessive daytime sleepiness where most days I have to take a nap at some point. I still experience just that sleepiness feeling every day. It feels like somebody could tell me something, and unless I have it written down, I'm not going to remember what they said. Having a visual cue of being able to see what I need to do so I can stay on track.
I also take cold plunges and ice baths, cold water, washing my face during the day to kind of help wake me up. If I feel a migraine coming on, that's usually my trigger and it tells me that I need to go take a nap.
I was accused of being an alcoholic. That's why they thought I could not wake up in the mornings. I felt a lot of shame from all the jobs that I lost. My family shamed me about it. Everybody kept telling me, why can't you just wake up in the mornings? But nobody actually knew how hard I was trying.
After I found my diagnosis of narcolepsy type 1 with cataplexy, I went online and I started attending these support group meetings.
“It's good to see everybody again this week.”
I was listening to these stories and it felt like they were talking about my life. Really gave me a sense of belonging, and it finally felt like I found my community in a place that I actually belonged in.
“Being on my feet and being able to walk around and be outside and get some fresh air and the blood flowing always usually helps.”
Facilitating group meetings makes me very happy when people find our meetings, because it feels like we're adding another family member. Because with narcolepsy type 1 with cataplexy, you absolutely need a support system. And having people that understand and have the same lived and shared experiences is an invaluable asset. Narcolepsy type 1 has taken everything from me and now I'm rebuilding.
I've been homeless. I’ve lived on the street. I'm currently on a friend's couch right now. You know, my goals are to find a job or get back into school and gain my independence back. Giving up is not an option. Even though there's been a lot of days where you think about it. Narcolepsy is incredibly difficult to live with. I was in a really deep, dark place for a long time, and taking the first step by going to the support group meetings was a huge step for me. It's helped me find a great sense of support. I can't imagine my life without it anymore.
Having narcolepsy type 1 for me feels a lot like being a deflated basketball. When the ball is deflated, can't really use it. Just like when you're feeling tired and you need a nap. So I literally live my life by a clock. I'm constantly just calculating how much time do I have to allocate before I become tired? I cannot stress enough that giving myself enough cushion time for a nap is imperative for me, just to ensure that I can enjoy the things that I want to enjoy without a fear of experiencing an episode in public.
My name is Justice. I have narcolepsy type 1. I definitely grew up as an athletic family, but I started noticing at specific times in the day I would pass out like a light bulb and definitely because I was a high-functioning human, a high achiever, excelled athletically.
People just chalked it up as “Justice is tired, enjoys a good nap” having narcolepsy type 1. For me, I just kind of just lose all control, honestly. So one of my symptoms that I deal with, regardless of the medication, definitely it's going to be kind of like this balance between the dream state and reality. I call it sleepy talk, where my brain literally thinks that I am still awake, but I am technically asleep.
So there are certain things I try to incorporate in my life to make my life even easier in dealing with having narcolepsy type 1. I call them little tricks. One of the things are sunglasses. If I do feel myself getting tired, I put my sunglasses on and nobody even knows that I'm asleep in public. People just don't get it and they don't understand.
And then you feel like a spectacle.
I try to avoid my body shutting down and passing out by taking a nap gap. It's 11 to 1. I'm going to be shut down.
If you do have narcolepsy type 1 and you are a collegiate athlete, you can do it. Just because you have narcolepsy type 1 doesn't mean you can't play sports at a high level and things of that nature. My teammates and my coaches have been a great support system. I have been incredibly lucky to be surrounded by people who can understand, who can advocate.
I don't have a fear of missing out, so I still will participate and go out. It's important to surround yourself with people who can advocate and protect you in those situations if you do experience an episode. I preach to people constantly how important communication is, how important it is to find a great support system when you can, but also just being open and honest about what you need in those moments, and not being fearful that somebody is going to misunderstand you.
TARA: My journey was a long journey. I always felt like something was off. I was misdiagnosed with a lot of things growing up. My parents just told me I had nightmares. But it ended up it was actually sleep paralysis and hallucinations. And, I then also had trouble sleeping. Lost a lot of friends, too, and missed out on a lot of things because of my sleepiness.
I was seeing a doctor and he was kind of concerned and then sent me to a sleep specialist, and that's when I finally got diagnosed.
I'm Tara and I have narcolepsy type 1. I am a pediatric sleep coach, just started my own business. It is hard to do things with narcolepsy type 1, so I make sure to break tasks up and not do the same thing for too long. So like I'll work for like an hour, but then I'll go do laundry or clean, do another task to kind of help, like switch things up and like wake up.
I am taking medication right now. I take nighttime and daytime medication. They do help, but I still do have symptoms. Like, I'm still tired every day. And that doesn't go away. I've always had cataplexy, but I was always told I was just clumsy because I drop things. It's usually when I'm stressed, my hands give out. So I like to crochet and do pottery and painting because it helps relieve stress, which is a huge trigger for my symptoms.
And knowing about orexin, I mean like knowing there's an underlying cause for NT1, I feel like, now, it isn't my fault. And it was not just in my head.
JOEY: “If you could only eat one food and that's all. What would it be and why?”
TARA: Joey and I, when we first met, he really impressed me. He said something along the lines like that must be difficult for you. He didn't just be like, oh, you can fall asleep all the time, right?
JOEY: On a day to day basis, I help Tara in pretty much any way that I can think of. Mostly it's a smaller task here and there that makes a world of difference to her.
TARA: To have a successful date night, we have to eat earlier rather than later just because I get tired.
TARA: “I’m gonna steal some of yours.”
JOEY: “I’m gonna steal some of yours.”
TARA: I need someone who is very empathetic and so, like, having Joey. He's been great. There are people who care and are empathetic. It's really nice because I never really thought that I would get that. Narcolepsy type 1—it definitely took things from me, but it also gave me a lot of things. Starting my own business has really helped me in a lot of ways.
Working in the medical field, I just really got tired of having to advocate for myself and being told I had to do it a certain way, when that way didn't work for me. It was sucking the life out of me and now being my own boss, because I can take breaks when I need to, I can really manage my narcolepsy symptoms.
JOEY: Whether it's making copies of her pamphlets, like I drive her to make those copies, any way that I can save her a little bit of energy, make her a little bit more comfortable. It's little things like that. That's important to communicate.
TARA: My life is going to be different than what I expected it to be, but I want to educate as much as possible, share my story, like talk about it as much as I can because most people don't really know what it is. It's not talked about enough and I just want others to know they're not alone.
JUSTICE: I cannot stress enough, that giving myself enough cushion time for a nap is imperative. My name is Justice. I have narcolepsy type 1. To be a division 1 collegiate athlete, you need a great support system.
CASEY: My name is Casey. I have narcolepsy type 1. After I found my diagnosis, I went online and I started attending the support group meetings.
TARA: I'm Tara and I have narcolepsy type 1. I am a pediatric sleep coach. Just starting my own business.
JUSTICE: So one of my symptoms that I deal with, regardless of the medication, it's kind of like this balance between the dream state and reality. I call it sleepy talk.
CASEY: Even though I do take medication, I still experience symptoms of narcolepsy type 1. I still experience just that sleepiness feeling every day. It feels like somebody could tell me something and unless I have it written down, I'm not gonna remember what they said.
TARA: Symptoms I still experience, regardless of the medication, is cataplexy. It's usually when I'm stressed, my hands give out. Stress is a huge trigger for my symptoms.
CASEY: So orexin is in charge of your sleep-wake cycles. It's a neuropeptide that people with narcolepsy type 1 with cataplexy are deficient in.
TARA: Knowing about orexin, I mean, like knowing there's an underlying cause for NT1, I feel like, now, it isn't my fault. And it was not just in my head.
JUSTICE: There are certain things I try to incorporate in my life to make my life even easier in dealing with having narcolepsy type 1. I try to avoid my body shutting down and passing out by taking a nap gap. It's 11 to 1. I'm going to be shut down.
CASEY: I'll take cold plunges and ice baths, cold water washing my face during the day. But if I feel a migraine coming on, that's usually my trigger and it tells me that I need to go take a nap.
TARA: I'm going to steal some of yours.
JOEY: I'm going to steal some of yours.
TARA: To have a successful date night, we have to eat earlier rather than later just because I get tired. I need someone who is very empathetic and so, like, having Joey. He's been great. It's really nice because I never really thought that I would get that.
JUSTICE: I preach to people constantly how important communication is, how important it is to find a great support system when you can, but also just being open and honest about what you need in those moments, and not being fearful that somebody is going to misunderstand you.
TARA: My life is going to be different than what I expected it to be, but I want to educate as much as possible, share my story, and talk about it as much as I can, because most people don't really know what it is. It's not talked about enough and I just want others to know they're not alone.
CASEY: Narcolepsy is incredibly difficult to live with. I was in a really deep, dark place for a long time, and taking the first step by going to the support group meetings was a huge step for me. It's helped me find a great sense of support. I can't imagine my life without it anymore.