How to Wake Up a Narcoleptic

I’ll let you in on a secret: narcoleptics can’t wake up in the morning.

I don’t know why this is, but it’s true — nothing wakes up a narcoleptic.

People with narcolepsy can turn off alarm clocks in their sleep — even the puzzle ones! — and can hold conversations while sleeping. Their eyes might be open, and they might be responsive, but the minute you leave the room, they are going to roll over as if they were never interrupted, because in a way, they weren’t.

Let me tell you, it’s humiliating to be unable to master this very basic life skill. How can you hold down a job if you’re always late because you oversleep? How can you hope to live independently when the only reliable way to wake you up is to have someone force-feed you your medications and drag you out of bed?

Since I’m currently living in Spain, I’ve had to figure out a way to wake up on my own. I’ve established a routine that works a good amount of the time; so, here is what I have to do to wake up in the morning.

Processed with VSCOcam with a6 preset

All the gadgets I use to wake up, in one nifty pic!

I have a 1100 lumen, 7000 Kelvin lamp — in regular-people terms, this means the light is “really freaking bright and really freaking harsh” — hooked up to a timer, and before going to bed, I program the timer to turn the light on at 6:30am. I keep the lamp as close to my face as physically possible, and when it turns on in the morning, I usually wake up a little bit from the pain the light causes.

Next, I have my Sonic Boom alarm clock, which is a horrifically loud alarm made for deaf people. It also has a vibrate function, so you can put it under your mattress and it will shake your bed until you wake up. I put it inside my pillow, right under my head, so when it goes off at 7:30, it literally shakes me awake. This is my cue to roll over and take a double dose of my stimulant medication, which I set out the night before next to my lamp on the nightstand.

After I take my meds, the alarm on my phone — which I’ve placed across the room — begins to go off, every five minutes, until the stimulants kick in enough for me to be able to drag myself across the room and turn off the phone alarms. Usually this takes about half an hour, bringing us to 8:00.

At this point, my body feels like it’s been hit by a bus, and I’m usually too sore and heavy-feeling to walk, so I play Candy Crush on my phone for another half hour — I consider it a victory if I can do this while sitting up — until my body wakes up enough that I can go to the kitchen and have a bowl of cereal and three huge glasses of water, at around 8.30. If I don’t eat at this point, the stimulants will burn through my system too quickly, and I will fall back asleep before 9:00.

I give myself a good hour to get ready, because chances are I will need all of that time. I move slooowly in the morning, and will inadvertently fall asleep during my morning routine, ‘waking up’ to find myself staring blankly at nothing.  I need to be at school by 10:00 on most days, and with this routine, I am usually only 5 − 15 minutes late, which in narcolepsy time is not late at all. 

Most days, this routine works pretty well. It’s actually empowering when everything goes right — It feels like, “Yes, I’m in control, I decide what happens and when.”

I occasionally sleep through all my alarms, though, and there have been times when I’ve fallen asleep in the space between turning off the Sonic Boom and reaching for my meds, which is super depressing. It’s a horrible feeling to keep waking up, seeing your meds within arm’s reach, knowing that all you have to do to start living is grab them and swallow them, but you fall asleep again before that can happen. Sometimes, this will happen for hours.

Oversleeping is generally an indicator of laziness, or a lack of discipline, and it can be difficult to understand that for narcoleptics, getting out of bed is not a question of willpower — we have to work much, much harder than everybody else just to wake up.

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30 thoughts on “How to Wake Up a Narcoleptic

  1. I didn’t realize that the big thing with narcoleptics was difficulty waking up; I thought it was having sleep attacks during the day. I didn’t accept my narcolepsy diagnosis for a while because I didn’t have several sleep attacks during the day. But I did and still do have a hard time with waking up. It’s embarrassing to ALWAYS run late for work, appts, etc. (Just “go to bed earlier” is supposed to solve this, I hear). BTW, I’m 60 years old and never tried that.

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    • XSYLVIA mason says:

      I have MS first diagnosed with possible narcolepsey in 2013 this year has been horric loads of daytime episodes actually not able to be aroused taken to a and e x waking up is horrendously difficultthen feel dreadful…cant understand what tbe effect of a trapped moth fluttering at my lips and even hitting my spectacles if i fall asleep with them still on there cant be anything worse buenos noches SYLVIA

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  2. I remember when I was diagnosed with narcolepsy and my mom and I both crying as I asked, “So it’s not just that I’m lazy?”

    I really love this because it describes so much of what I try to explain to people that are close to me, or people that have to deal with my sleep patterns and difficulties waking up. I always set 6-10 alarms in the morning way before my desperate getting up time and still end up sleeping through them all at times. I’ve slept through so many important things, and, “I’m so sorry, I slept through all of my alarms,” just doesn’t sound like a legitimate or good enough excuse for any normal person to sympathize with. And it sucks. Because I can’t make it sound any better and I can’t make them get it. I’m so tired of feeling like it’s my fault, even when I know it’s not.

    I just began teaching and I’ve been so afraid just thinking about the day when I don’t wake up in the morning and don’t show up for work. How do I explain that? I’ve asked my mom to call me in the morning at a certain time to make sure I’m awake and I’ve asked my boyfriend to call and talk me out of bed, but how do any of us know that I won’t just have the conversation with them that I asked them to have, making sure I’m awake, convince them that it worked, and then fall back asleep immediately afterwards? I have dream-like memories of so many conversations with awake people that I don’t really remember having because they weren’t real to me. The consequences of this thing are absolutely terrifying because it takes all control. All of it. And I have those in-between moments, where escaping my dream and keeping my eyes open is the most difficult thing I’ve ever done and I can’t move no matter how hard I try. How is it that every single day of my life I can say that the most difficult thing I’ve ever done is get up that morning?

    I’m trying to design my own system of what will work for me to get out of bed and hopefully not go back. When you teach, do you inform your bosses and your colleagues of your narcolepsy? It’s so misunderstood and it’s so hard to understand and I don’t even understand my own brain, and I don’t know if it’s worth trying to explain over and over again to anyone who will never know what it feels like or how it affects a person. But I want them to know that I’m trying really hard and that I want to be there, even when I show up mostly asleep or when I mentally exit a conversation completely or want to take a nap during prep.

    I know I said a lot, but I would love to know how much, if any, information you give to people you work with and what you might say to help them understand in the slightest what you’re dealing with. I don’t want to make it a poor-me-life-is-so-hard-feel-bad-for-me conversation, and I don’t want anyone to think that I’m capable of anything less (even though it’s extremely hard to measure up to anyone else’s capabilities of basically anything) is it necessary for them to know?

    Liked by 1 person

    • Daniel says:

      That can be a tough situation. I like to explain that having narcolepsy is like having a phone with a battery that has trouble holding a charge. There is literally less of the neuropeptide orexin (hypocretin) in a narcoleptic’s brain. That neuropeptide is vital to be able to wake and sleep well. I like to point out that just getting plenty of hours of sleep at night isn’t a guarantee that I will be able to stay awake well during the day. That missing orexin is still there. I do my best to take medication to counter that problem. It helps some, but it isn’t perfect either. Hope that explanation helps.

      Liked by 1 person

      • NishaG says:

        My son is 15 and sleep study showed some “signs” of narcolopsy in 2016, I had no idea what this was so I didn’t know what to expect. My son has never been medicated for narcolopsy but now i realize hiw diffucult life is having this. Honestly i feel helpless, this year 2017 it seemed to worsen , he never makes it to school on time he sleeps through the weekend and has no energy to even get up to eat, he looks depressed. I am in a lost i feel frustrated because all i want is for my son to get up and live a normal life i guess i just don’t get it. Hopefully the neorologist will prescribe meds when i take him this week. The struggle is real.

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  3. Jon says:

    I have been diagnosed two months ago, and I am constantly late for work. I told my boss today about my condition. And all he said to me was do you have a doctors note? It felt like he thought I was just trying to make an excuse. It made me feel so bad about my self and what I am going through. How do you get people to understand what it’s like?

    Liked by 1 person

    • Mason says:

      This happened to me today. My job requires being on call for 2 weeks at a time on occasion. I’ve never had to do it, I’ve gotten around it but I was put on call starting this Friday and I talked to my boss and he just told me figure it out because he’s not going to deal with me any different than anyone else. He suggested I set another alarm or hook up a blue tooth speaker. I’m thinking dude you don’t realize how that already is an issue after 6-8 hours of sleep. What happens if I pass out and then they try to call me 15 mins later? I’m not waking up. He told me that if I don’t I’ll get written up like everyone else. I gave HR a copy of my prescription and diagnosis to have on file and no one cares. Suggestions?

      Liked by 1 person

  4. Mason says:

    This is interesting, i really want to try these. I have to wake up by 530 at the latest to get to work on time and i have to set so many alarms just to get up. i totally relate to not always being able to wake up to take my medicine. i even got a vibrating wrist alarm. I want a light! I’ve had issues my whole life. As a kid my dad would literally drag me out of bed and then get mad at me when he’d come back 5 mins later and i’d be passed out on the floor. I wouldn’t even remember waking up. I used to get into trouble all the time for falling asleep in the car too. it didn’t matter if it was a 5-10 min. car ride. It would be impossible to wake me up for a period of time. my mom tells a story of when i was 6 or so and i fell asleep in the car and my dad refused to think i was asleep because i looked awake but Zombiesh so he put me in the middle of the front yard and threw a football at me and i just stood there. I just got diagnosed 2 months ago at 22 and i just think… like man if they’d have tried to get me help as a kid i’d have had such an easier time. Everyone just thought i was a bad kid or didn’t care, or was lazy. My first car was a 2002 dodge neon that i totaled when i was 19, 3 weeks after buying it because i woke up when the passenger side hit the guard rail. still i couldn’t get a diagnosis. What the heck. it was only when i got married and my wife was like “This is not normal. I fear you falling asleep with the kids in the car or even just by yourself.” that i finally got help. i just always thought i was an oddball or maybe even that it was a spin off my Tourettes or something. They did the sleep study and i passed out with in 2-3 mins of all 5 of the day naps and slept solid though the night one. Then i came back way out of range on my high resolution blood test. i’ve been late easily over 100 times in the last year and my boss literally has told me when i told him about my narcolepsy that back in his day they didn’t have have problems sleeping and my dad should have beat me more. What the heck! No one gets it.

    Liked by 1 person

    • Narcoleptic Dragon says:

      I really think that people just don’t care sometimes! I’m going through the boss issues now and I’m sorry you are dealing with it too!
      I also used to fall asleep in the floor as a child/teen….

      Liked by 1 person

      • Alice says:

        Just a funny little aside: When I was really little (2-6yrs) I would go to the bathroom and not come back, my mom would go looking for me and find me asleep on the toilet, just the time it took to pee would be enough for me to fall asleep. 😀

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  5. Narcoleptic Dragon says:

    I’m laying in bed crying after readin this! Thank you! I have narcolepsy, and I have been going through hell at work trying to get them to understand … I’ve been told by my supervisor I need to “just be an adult and arrive on time” and “I don’t see how being late so often is a part of your medical condition, it seems like it’s just a habit for you.”
    HR has been working with me but since my supervisor isn’t I am killing myself to be there at 8am. My fiance forces me to take my medicine at 530am when he gets up, then he lets my cat in the room, before he leaves for work. He then turns on the bedroom light remotely and calls at 615 and tries to talk me awake. When my cat heres me talking she jumps in the bed with me and meows, headbutts, and kneads me for attention…. I have 4 more alarma after that phone call to make sure I get dressed and out the door by 745… if there is a wreck, I am out of luck, I will be late. (Late being 801am usually the latest I’ve been being 807am.
    I’m amazing at my job and been employee of the month 4 of the last 6 months, but the constant harassment from my supervisor has made me feel awful, and like maybe I am just lazy in the mornings.
    So I am laying here crying happy tears. Thank you so much for this post, and validating it is my condition that makes me struggle in the morning. Know that you helped someone by posting this!

    Liked by 2 people

  6. Linda Owens says:

    ..I have a problem with putting my medication in my mouth after waking to one of my many alarms to waking about 20-50 minutes later with the medication still in my mouth, half dissolved, stuck to my tongue(disgusting taste) pr in my throat part way.
    I wake enough to put the pills in my mouth but never get the water bottle to my mouth.
    Or sometimes I wake an hour or so after my alarm and I am holding my pills in my hand.
    Or sometimes my pills are spilled around me in my bed.
    In any of the above ..I am ALWAYS LATE>

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  7. LateAM says:

    ..I have a problem with putting my medication in my mouth after waking to one of my many alarms to waking about 20-50 minutes later with the medication still in my mouth, half dissolved, stuck to my tongue(disgusting taste) pr in my throat part way.
    I wake enough to put the pills in my mouth but never get the water bottle to my mouth.
    Or sometimes I wake an hour or so after my alarm and I am holding my pills in my hand.
    Or sometimes my pills are spilled around me in my bed.
    In any of the above ..I am ALWAYS LATE>

    Like

  8. I recommend pavlok – it’s a wearable alarm clock that delivers a really horrible electric shock and vibration and high pitched sound. Though to be honest even that doesn’t work for me all the time. I hate having this sleep disorder thing. I’ve got an appointment for MRIs and stuff booked soon, so might be able to get some meds. At present it’s ruined my entire life. Wish I could have a normal job. Everyone thinks I’m lazy. All of my relationships have broken up because of having a sleep disorder. I can’t have a boyfriend or anything because no one can handle my sleep problem. I set 2 alarms at ten minute intervals over the course of 4 hours and that doesn’t work. I also have the electric shock thing and a vibrating alarm and nothing works. I’ve even ended up horrifically burned before due to not being able to wake up. My legs are covered in actual holes in my flesh from burns, after having an attack next to a fan heater and not being able to wake up. I’ve had attacks on the bus and been mugged before while asleep. Still no one believes me.

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  9. Sleepyhead says:

    I am so so happy to have read this. I had no idea that other people out there suffer so badly with the sleep inertia, it cripples me. People always think I am unreliable and lazy and frequently, even this morning, my housemates flip out at me having heard my alarms all morning that I have slept through.
    I always feel groggy in the mornings and it takes me forevermore to feel awake even after my meds.
    Before my diagnosis i slept through exams, class and numerous appointments, and never ever awoke feeling refreshed.
    I’m studying medicine so early mornings and long days are a necessity, and being late is not accepted. If it wasn’t for my boyfriend who stands me up in the mornings I would never have even got into my course.
    Does anyone have any suggestions for alarms in a share house? I have seriously considered a Wallace and Gromit style bed catapult.

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    • Alice says:

      I’m not in med-school, I’m going the PhD route in Neurobiology so I’m almost in the same boat.
      Tell your roommates to shut the f**k up and wake you up instead of bothering you when you are awake. Explain that you have a medical condition and that you would appreciate their help because the sooner you’re awake and moving around the sooner the alarms will turn off. I don’t know if you lock your door but you can have them literally pull you out of bed or bang on your door until you get up to answer it. And if they can’t understand that then you need better roommates because if you are trying your hardest, that’s all you can do and they have to deal with it.
      I have coworkers, friends, classmates call me to make sure I am up and getting ready. I have answered the phone and talked to people then passed out again. I have TWENTY alarms and a timer that turns on a bright light directly in my face and very loud music. And at least twice a week I sleep through all of that…

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  10. Kay says:

    First of all, thank you for sharing your story. I have to say this though… to say nothing wakes up someone with narcolepsy and that they cannot wake up in the morning is a generalization. Remember that narcolepsy is extremely misunderstood and underdiagnosed. When I read that the first thing I thought about was how generalizations like that played a factor in delaying my narcolepsy diagnosis. It took 12 years for me to be diagnosed (as you may know the average is a shocking 10 years). Everyone with narcolepsy has their own unique experience and it pretty much is a spectrum of sorts. A friend of mine has narcolepsy without cataplexy and her only symptom is EDS. I have narcolepsy with partial cataplexy and the rest of the major symptoms. Here’s the thing: even prior to treatment it was not impossible for me to wake up. Natural light “waked” me up and me know knowing I’d lose my job! I guess if what you mean is to feel “awake” that’s another story. Of course, it’s a groggy wake up, but nonetheless it’s a wake up and not impossible to wake up. Remember severity and resilience differs from person to person. People have different severity levels of narcolepsy. Some people might be more resilient to those awful untested morning wake ups simply because she or he went a decade believing it was normal and adjusted life the situation. Anyway, thank you again for sharing your story. Best of luck to you!

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  11. Professor paregoric says:

    I honestly don’t believe that narcolepsy is taken seriously at all. We’re the clown of the auto immune world.
    There have been times where I’ve been convinced that I would die I was so exhausted.
    I mean how many times have you heard ” yes well everyone gets tired, I must have narcolepsy on Monday mornings” that one gets old really quickly!!! Try flying long haul everyday for a year, that level of jet lag might imitate what’s it’s like for us.
    I just think that we’re, like, on the edge of society, not really completely part of it. It’s absolutely unacceptable to most people that you’re not just lazy. I don’t believe that society is prepared to tolerate sleep disorders. There a have been some people I’ve known whom I’ve actually wished they’d get it I’m ashamed to say! I wouldn’t wish this on anybody but there have been moments I must admit.
    I’ve met loads of people with no empathy whatsoever, then their child develops narcolepsy or God forbid, they do and suddenly they’re the champion of narcoleptics, they send you links on new research and feel the need to tell you about narcolepsy, things you already know, you’ve been living the dream all your life.
    Another thing I’ve noticed about narcolepsy is that I haven’t met anybody with narcolepsy who isn’t highly intelligent, I remember a doctor telling me once that the brain has to make room for that massive IQ while we develop as foetuses, so something has to give!! 😀

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  12. Amber says:

    Officially I have Idiopathic Hypersomnia, but I feel like it’s just some version of narcolepsy that they haven’t given a real name yet. I have been feeling so awful because I can’t get up to go to work. I have a friend that calls me in the morning and that helps but not always. And it’s only 4/4/17 and I’m already out of my leave time at work (and I get like 3 weeks worth). This article has given me hope. I thought it was just me. But I am going to get a sonic boom alarm and maybe one of those lamps and an alarm that runs away and see if that helps. Thank you sooo much for your story!!!

    Like

  13. Tarry says:

    Thank you, as a mother with a narcoleptic son, all of you have given me hope he will have support in your community. His diagnosis is Narcolepsy, restless leg syndrome, sleep paralysis, REM behavioural disorder and Pyrrole disorder. We have been looking into a support dog to assist with waking him up in the morning, to help him gain some independence and find control over this underrated condition. He is an extremely intelligent young man and we are very proud of how far he has come since being diagnosed. Your stories have helped me understand his world a little bit more and has given me the strength to keep going on this journey with finding solutions. On another note HR departments and mangers in the workplace, can not discriminate against medical conditions, stay strong and remember you have strength in numbers. 😻

    Like

  14. Casper says:

    I dislike your last comment:

    “Oversleeping is generally an indicator of laziness, or a lack of discipline, and it can be difficult to understand that for narcoleptics, getting out of bed is not a question of willpower — we have to work much, much harder than everybody else just to wake up.”

    While you probably just mean to explain the special situation of narcoleptics, please don’t hit at other vulnerable groups. There are many more people with sleep disorders than narcoleptics. I have ME, also a brain condition, our deep sleep is impaired too. (Actually Xyrem has been used with success in clinical trials for ME/CFS and fibromyalgia patients.) My day and night rhyth can be completely chaotic. I have struggled with it all my life, lost jobs, been kicked out of school. I have managed because I am intelligent, but this has also caused people to criticise me even more — according to their prejudices, an intelligent person has to be succesful.

    There are many more conditions where sleep is impaired, and all of these people need to work harder, and they are scorned by society and poorly understood by doctors. We should all be solidaric with other ill or struggling people.

    Like

    • That’s a good point! It was definitely not my intention to be dismissive of other illnesses which cause extreme fatigue and sleepiness. You’re right that we all need to support each other!

      Like

  15. Carissa Dib says:

    Thank you so much for your writing. Just started Xyrem. I hate it and only 8 nights in. You and a very few others give me hope to at least give this trial a few months. I want to start a blog about Xyrem (I was terrified to take it) and I’m utterly shocked there’s no (that I can find) easy information about right diet. (Seems that high fat lowers absorption. I like being in low-carb Ketosis and didn’t know GHB is an actual form of ketone. So I’ve been stressing my kidneys to max and Xyrem wasn’t being absorbed properly b/c of my high fat dinner. Bulletproof coffee gal here). But, alas, I don’t have the mental capacity or energy to start it. Or do anything for that matter LOL.

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