Living With Narcolepsy - An Interview

Written by Katherine Stavisky | Date of Interview: May 21, 2012

Narcolepsy is a sleep disorder that affects roughly one in two thousand people and usually onsets in adolescence [1]. With over 150,000 people living with narcolepsy in the U.S. alone, it is important that we are able to empathize with those who are affected by it, because chances are many of us know someone who is. Towards that end, we ask, what is it really like living with narcolepsy?

Recently, this site shared an interview with the world's leading narcolepsy researcher, Dr. Emmanuel Mignot. This time I sat down with a freshman at Stanford University, Julia (who wished to withhold her last name for privacy purposes), who has narcolepsy herself, to talk about the disorder.

KS: When did you experience your first symptoms of narcolepsy?

Julia: When I was a sophomore in high school I started noticing I was falling asleep all the time. I was falling asleep in essentially every class until about October when I fell asleep at the wheel and my mom decided that the symptom was severe enough to take me in to the pediatrician. My pediatrician referred me to a sleep doctor. I did a day study and a night study that tested the frequency of my eye movements in the day and night and that's when they diagnosed me with narcolepsy.

KS: What was your family's reaction to this diagnosis?

Julia: My dad has similar symptoms of narcolepsy. He also has experienced not being able to stay awake in class or at the wheel so he was not surprised, although all of us were very surprised that it was some sort of condition rather than just an abnormality in my sleep. I think my parents were concerned that it was something I would have to deal with for the rest of my life rather than it being something that teenagers grow out of.

KS: What symptoms of narcolepsy do you have?

Julia: I am unable to keep myself awake in the day and spontaneously fall asleep when I am passive, which includes classes, any sort of work, if I'm reading, and when I'm driving. Occasionally I've also had it when I'm active like when I'm standing up or talking to people. I also have very mild cataplexy, which means that during my most extreme emotional states I have muscle weakness and can have symptoms that are similar to sleepiness.

KS: How has narcolepsy affected your life?

Julia: In general it's made school more difficult. I can't do homework for long stretches of time without taking a nap, and in classes my teachers may think I'm rude because I fall asleep, but I'm literally unable to stay awake. It's also made tests extremely difficult because they're passive and quiet and if I'm sleepy I can fall asleep which obviously can have a big impact on my academic life. Also, the cataplexy has had some strange effects in terms of when I'm extremely happy or extremely sad. Having weakness in those times is not advantageous, to stay the least.

KS: Besides making school more difficult, has living with narcolepsy affected your social relationships?

Julia: All my friends know that I have narcolepsy. Some make fun of me because of it, others are sympathetic. But, I think they understand. Several times in high school I've fallen asleep while literally having conversations with my friends. Because they know about the narcolepsy they are forgiving and sympathetic. But when I'm meeting new people, like in classes, I think people may have bad impressions of me if I'm asleep even though I can't help it.

KS: So, outside of your friends how do people usually react when they find out you're narcoleptic.

Julia: Well, I normally don't tell people that I don't know very well. Sometimes I tell my teachers and at first they think it's hard to believe but when I explain the science of it they at least know I know something about it. It's much better now that I'm being treated for it. Since I'm on Nuvigil people don't necessarily know if they're just strangers; I can hide the symptoms and pass it off as not having enough sleep the night before.

KS: So how do people's reactions usually make you feel?

Julia: At home a lot of my friends made fun of me and I really didn't like that. Not in the sense that they were being mean, but just because they thought it was hilarious that I would fall asleep randomly. And it is funny but it's also very real for me especially in situations where every fiber of my being wants to stay awake and I can't. It's really not a funny situation. I also think the more serious symptoms people tend to overlook. It really does impact my academic life and it really does endanger me when I'm driving. So it frustrates me when people treat it as a joke rather than something that's real and medical and that needs to be taken seriously.

KS: You mentioned you take Nuvigil. Does it help?

Julia: I take it in the morning and it lasts all day. It's a stimulant so it makes me a little more jittery. It counteracts my sleepiness in general, and makes me a little less passive. It doesn't really fix the problem because I'm still sleepy when it runs out. But, it treats it during the day when I'm in school and when I'm doing homework. It lasts eight hours which means that when I take it at nine in the morning it's out by five or six at night. This is unfortunate because when I'm trying to do homework in the evening I often have trouble with sleepiness.

KS: Did you feel a marked difference when you started taking it?

Julia: I went through a long process of trying to find the right medication. I started on the smallest dose of what's called Provigil, which is the more rapid release capsule that doesn't last as long; it only lasts four hours. And that didn't work for me partially because I had trouble taking it. My high school required us to take medications in the nurse's office, which was a long way from my classes, so I had to take it in the middle of the day, which was rough. Also, it just didn't have very much of an impact on me for some reason.

When I started taking Nuvigil I did notice a difference, particularly on my driving in the afternoon. It just lasted longer; it made school easier. Now I'm taking, by my understanding, the strongest dose that is available to narcoleptics on the market. I guess it keeps me more awake. When I don't take it I feel really sleepy and unable to focus.

KS: Besides medication does anything help alleviate your symptoms?

Julia: Sort of. If I'm active all day, I generally don't fall asleep. So if I'm not in school, if I'm outside then I won't fall asleep. My doctors have told me that getting a long night's sleep helps because it makes your body not even come near to the REM threshold. But even in the summer when I get fourteen hours of sleep I still fall asleep regularly during the day. So, I don't think there's anything I can do to prevent myself from falling asleep. If I take short naps, that helps. Any time I actually allow myself to sleep that helps with the symptoms because I feel rested. But taking naps is difficult, especially during class when you're fighting it for a long time rather than just putting your head down and falling asleep for three minutes.

KS: Does anything besides being passive make your symptoms worse?

Julia: If I'm extremely happy or extremely sad I tend to fall asleep. If I haven't had much sleep, if I'm tired in addition to sleepy--which is very distinct in my mind--I am more likely to fall asleep instantaneously.

KS: So how has the transition to college influenced your narcolepsy? Have the irregular hours and lack of sleep made it worse?

Julia: No, actually it's been hugely beneficial. The reason why is that I don't have to go to school for eight hours in the middle of the day. So I can come home and nap. I very often take five-minute naps after lunch and after dinner. So rather than in high school having a back-to-back schedule I can take breaks and put naps into my schedule, which makes me more rested. I think I actually don't get less sleep in college--I got less sleep in high school because I was an athlete. I don't think that's been a huge problem.

KS: Do you worry about how narcolepsy will affect your future?

Julia: Definitely. My doctors have told me before that I can't take Nuvigil when I'm pregnant which really scares me because I can't be working and not be on Nuvigil. If I continue with my current treatment I couldn't be working and pregnant at the same time. It scares me that the cataplexy might get worse. I'm not sure how that will continue to affect me and in general my safety when I get to be doing more driving and more working and things like that. It also becomes less acceptable to put your head down in a large lecture versus in a small meeting where you're an important agent. So I think that in terms of my professional life and my family life in the future, it makes me a little concerned.

KS: Do you worry that your children will have narcolepsy?

Julia: I talked to my doctors and they say it's very, very rare. People have genetic markers for narcolepsy but you don't just get it from your parents. They said only two percent of children of narcoleptic parents have narcolepsy themselves. Also, on the spectrum of things your kids could have, narcolepsy isn't that terrible because it's treatable and treatment is developing around it. So it wouldn't be the worst thing.

KS: What do you think is the most important thing that the public should know about narcolepsy?

Julia: I think that people should recognize that it's very different from moments when they're really, really sleepy. I personally think it's very different from being very sleepy in a moment as opposed to literally wanting with every fiber in your being to stay awake and not being able to. I don't think very many people have honestly had that experience. I also think it's important to recognize that it's an actual condition that people are sensitive about and that it affects people's lives and that it's not a joke in the sense that you watch YouTube videos of narcoleptic puppies and laugh at them. It's not really the same because it actually does impact people's lives. It's important.

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Julia is a highly successful student, athlete, and is very active in many campus events and organizations. Though narcolepsy has certainly affected her life, she has not allowed it to take it away from her. Narcolepsy is a treatable disorder but it should not be taken lightly. Diagnosis and treatment can make the difference between chronic sleepiness and inability to function and the success Julia has experienced. Further, undiagnosed narcolepsy can put you at serious risk for vehicular accidents due to drowsy driving. If you suspect you, your child, a friend or family member may have narcolepsy it is important to talk to your doctor about it.

Julia's is just one experience of living with narcolepsy. You can offer your thoughts to her in the comments below, or, if you have your own experiences with narcolepsy to share please do so here so we may help increase the world's empathy.

Citations

[1] Mignot, Emmanuel. "Narcolepsy, Dogs, and Dreams." 2012 Sleep and Dreams Lecture. Stanford University. 11 May 2012. Lecture.

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