Get Some Sleep: Daytime sleep attacks = narcolepsy
February 8th, 2011
10:07 AM ET

Get Some Sleep: Daytime sleep attacks = narcolepsy

Lisa Shives, M.D., is the founder of Northshore Sleep Medicine in Evanston, Illinois. She blogs on Tuesdays on The Chart. Read more from her at Dr. Lisa Shives’ Sleep Better Blog.

Kerry was 32, the mother of three small children, and she was falling asleep several times a day. She sometimes had to pull over and take a nap when she was driving even though she was only running an errand in her own neighborhood.  She also complained of “fainting spells” that she was told were due to “low blood pressure or low blood sugar.”

It was a miracle that she had not wrecked her car and killed herself or her children.

She had symptoms that were textbook for narcolepsy but she was not being treated.  There are excellent treatments that allow people to live very normal lives, although I’m not sure brain surgeons or air traffic controller would be great job choices for them.

Narcolepsy is marked by extreme daytime sleepiness. Patients will usually report actual sleep attacks, where profound sleepiness comes over them and they can’t resist the urge to sleep.  They could be in conversation with someone, in the midst of eating a meal or driving along the highway.  Another classic symptom, one that is unique to narcolepsy and is often confused with sleep attacks, is cataplexy.  Cataplexy is a sudden weakening of the muscles, either full body, in which case, people crumble to the ground as if they have fainted, or it can affect select muscles say of the hands or face.  People are awake, at least at the beginning of the episode.

Two other symptoms that give us a clue that a person has narcolepsy are “hypnogogic hallucinations,or hallucinations that occur as the person is falling asleep, and sleep paralysis.  People see or hear things, for example, thinking that someone is in the room, and usually it startles them and freaks them out.  We call them hallucinations because the patients think that they are still awake, but really they have slipped immediately into REM sleep and have started dreaming. If they occur upon waking, we call them hypnopompic hallucinations.

Sleep paralysis occurs upon waking, in the morning or from a nap.  People wake up, open their eyes and then realize that they can’t move their bodies.  It usually lasts only a few seconds, sometimes a minute or two at most, but it is long enough to be very frightening.

In the past, many people with narcolepsy had symptoms for years before they got an accurate diagnosis.  Often, they were told that they were lazy and unmotivated. Undiagnosed narcolepsy can have devastating effects on academics and work.  Sometimes it was misdiagnosed as depression, drug abuse or, when hallucinations were reported, schizophrenia. I have seen patients with a clear history of cataplexy who were told they had seizure disorders or syncopal (fainting) episodes.

The good news is that narcolepsy is better recognized now by general practitioners.  Certainly a sleep doctor would be suspicious usually at the first interview if a person had some key symptoms. We test for it by doing an overnight sleep study (polysomnogram) to rule out other more common sleep disorders such as obstructive sleep apnea, and to ensure that patients have adequate sleep for the study that we run the next day which is called a MSLT (multiple sleep latency test).  We also call this a nap study, because we ask patients to get into bed every two hours and try to nap.  We calculate if they fall asleep, how fast they fall asleep and whether they have REM sleep.

Narcolepsy is really a disorder of sleep state instability or, another way to put it is, there is slippage between wake and REM sleep specifically.  All the symptoms can be understood as manifestations of REM intruding into daytime wakefulness, but also we know that wake intrudes into sleep.  People with narcolepsy have very disrupted sleep and little slow wave sleep, which is the deepest sleep.

Narcolepsy affects somewhere between 0.025-0.05percent of the population.  Many people will tell me that they think that, for example, their grandfather had narcolepsy because he could fall asleep “any time, anywhere.”  Given how rare narcolepsy is, it is more likely that he had sleep apnea which can make people so tired they have sleep attacks that resemble narcoleptic sleep episodes. Narcolepsy symptoms usually appear in teens and young adults, although there are many reports of people developing this disorder later in life.

We know that most cases of narcolepsy are caused by a loss a wake-promoting neurotransmitter called hypocretin (aka orexin).  We don’t know what causes the loss of these neurons but it appears to be secondary to autoimmune destruction.  We don’t know what triggers this cell destruction but it is hypothesized that it may be a viral infection.

In dogs, narcolepsy was found to be caused by a genetic mutation, but after years of searching the human genome, researchers could not find a similar genetic cause in humans. There is a blood test called HLA-DQB1*0602, which is usually positive in patients with clear-cut narcolepsy with cataplexy but this only shows that the disorder is probably an autoimmune disorder. And many people are positive for this test who never develop narcolepsy.  It is not a test that is clinically very useful and is generally used only in research.

We have good medications to treat narcolepsy.  For daytime sleepiness, we usually use modafinil, which is a wake-promoting agent that is far gentler with fewer side effects than the traditional amphetamines that were used for years.  The newest drug to treat narcolepsy is sodium oxybate, which is a strong sedative that is used to consolidate sleep and help narcoleptic patients achieve more deep sleep.  It also can control cataplexy, although how it does this is not fully understood.

I have seen so many narcoleptic patients come to me as complete wrecks because the symptoms can cause such havoc on their personal and professional lives, which in turns leads to depression and despair. But when the patient gets the needed treatment, it is really like he or she is a new person with a new lease on life.

Kerry was no exception.  When I told her that the test results confirmed my suspected diagnosis of narcolepsy and that we could start the medications right away, she wept with relief but also frustration at not getting the diagnosis earlier as well as anger at herself for not getting another medical opinion years ago when her problems started.  Within days of starting the modafinil and sodium oxybate, she felt better than she had in years.

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Filed under: Sleep

soundoff (133 Responses)
  1. mark in nyc

    or a reaction to a late night.

    February 8, 2011 at 10:31 | Report abuse | Reply
  2. FellAsleep

    I feel into a deep sleep reading this.

    February 8, 2011 at 10:35 | Report abuse | Reply
    • CATO


      February 8, 2011 at 11:47 | Report abuse |
  3. Holly Mann

    I have narcolepsy – diagnosed at age 14. I had excessive daytime sleepiness and nighttime sleep paralysis happening all the time. One time a year or two ago I stopped taking modafinil – and right away I started having sleep paralysis/hypnogogic hallucinations again. if you think you might have this, get it checked out.

    February 8, 2011 at 10:48 | Report abuse | Reply
    • michelle

      I lost 2 jobs as a nurse for falling asleep, Had 1 car accident, couldn't watch a whole movie and flunked out of my masters program, twice. Finially I asked my family physiciam about my problems. I have narcolepsy and Nuvgil changed my life.

      March 7, 2011 at 22:38 | Report abuse |
  4. TSchneider

    I always fall asleeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee

    February 8, 2011 at 11:04 | Report abuse | Reply
  5. Tifosi

    Wait. She has three small children and is exhausted all the time manifested with sleep attacks? What parent has NOT had that. The story does not say if she had the episodes before she had kids, only that it affects her now. I had the same thing, but it went away as the kids got older. It affects only .03% of the population, but the writer sees it all the time–does she see what she expects to see. If it rarely develops late in life, why does she suddenly have it now?

    February 8, 2011 at 11:05 | Report abuse | Reply
    • whatnext

      Right. Now any overworked busy person who doesn't know what eight hours of sleep are can give in to that urge to nap during the day, tell their boss and doctor it was a sleep attack, and get diagnosed with narcolepsy.

      February 8, 2011 at 11:20 | Report abuse |
    • Carol

      I would expect someone who is a specialist to see relatively unusual disorders more often than a GP would. Considering that she describes ruling out more common causes before ruling something to be narcolepsy, I think it's pretty unfair to accuse her of hunting for zebras before she checks for horses.

      February 8, 2011 at 11:38 | Report abuse |
    • RLR

      As someone who has struggled with narcolepsy for 10 years, but who didn't begin having symptoms until I was thirty–I wish this terrible disorder on you. I had two children before I developed the condition, and I can tell you that narcolepsy is NOT "typical parent fatigue." I look back fondly on all those so-called "sleep-deprived days" where I went to work after being up all night with a crying infant. That was NOTHING compared to the way I struggle now to just get through every day. Sadly, I wasn't diagnosed until recently, which means I too went through ten years of incorrect diagnoses and treatments. And to all the posters who think that narcoleptics are just lazy people using their disorder as an excuse: I am a single mother raising two teens; I have a a demanding day job, I run a small business, and I have a novel out that is currently on two Amazon Top 100 lists. Try informing yourself with facts before judging other people. Trust me, narcoleptics are usually hard enough on themselves without you piling on with your ignorance.

      February 8, 2011 at 12:09 | Report abuse |
    • Natalie

      There's actually a long process involved in diagnosing narcolepsy, which includes daytime and overnight stays in a sleep lab. A marker for narcolepsy (as well as other sleep-wake disorders) is the entrance into REM sleep quickly after the head hits the pillow (in normal people, REM sleep occurs later in the sleep cycle). Another is a complete loss of muscle tone (called cataplexy, mentioned in this article) while totally conscious of surrounding events. Like Carol said before me, it's pretty safe to say that her doctors ruled out other possibilities before jumping to such a rare diagnosis.

      February 8, 2011 at 12:13 | Report abuse |
    • Not quite...

      Tifosi & whatnext, while how narcolepsy is diagnosed is given a brief overview in the article, what's not plainly explained is that a proper diagnosis can't be faked by the patient. For a normal person, sleep follows a set pattern, it doesn't change, REM is entered around 90 minutes after falling asleep. The brain of a person with narcolepsy can't regulate that pattern, and they look for multiple occurrences of REM sleep during the naps in the MSLT (performed after a verified full night's sleep). The patient is given about 20 minutes to fall asleep, sleep and REM must occur within minutes to count as an occurrence. The diagnosis is so strict that it takes many people with narcolepsy multiple tests to confirm the diagnosis, and with reason, medication is usually an amphetamine. And given that there is no cure, that is for the rest of their lives.

      Onset is usually in the late teens or early adulthood, but there is an average 15 year delay between onset and diagnosis. As a result it's estimated that only 25% of people with narcolepsy in the US have been properly diagnosed. And the sleepiness associated with narcolepsy is less of the "My kid woke up eight times last night" sleepy and more of the "I haven't slept in 96 hours" kind of sleepy (even after 8 hours of sleep). It costs people their educational futures, careers, personal relationships- it really ruins lives. Implying that people with narcolepsy should buck up because your kids kept you up some nights is like telling a starving Ethiopian kid to buck up because you once had to live on ramen for a month.

      February 8, 2011 at 12:57 | Report abuse |
    • whatnext

      Not quite..., I didn't imply anybody should buck up. I simply suggested articles like this set the stage for overdiagnosis, something this country is known for. Costing people their educational futures, careers, personal relationships. Ruining their lives. That's a far cry from RJR having a a demanding day job, running a small business, and having a novel out that is currently on two Amazon Top 100 lists. (It's not under those initials.)

      February 8, 2011 at 17:04 | Report abuse |
    • Not quite...

      whatnext- I should have better specified the individual responses, so I apologize about the confusion, the implication in question was from Tifosi, who implied that anybody with children knows what narcoleptics deal with. I included both of you in the same response going over how a diagnosis is obtained, because the disorder is not as simple as being a little tired, as Tifosi and many others here have stated, jokingly or otherwise, and while I understand your concern for overdiagnosis in a culture such as ours, I was also pointing out that narcolepsy can't be faked by the patient. While there might be concern of doctor's handing out diagnoses like candy, it is generally sleep specialists that handle these cases, or at the very least a regular neurologist, a doctor at a prompt care can not. Further cutting down on the risk of overdiagnosis is the fact that the normal medications are narcotics, doctors need to regularly report to the government what narcotics they're prescribing, to whom, and for what reason. Not to say that it doesn't or couldn't happen, but you'll never be reading about a narcolepsy epidemic, anymore than you'll hear about mass Parkinson's diagnoses.

      I'm happy to hear that RLR has been successful in dealing with her disorder, at least from what she's stated in her post. She also mentioned that symptoms appear until she was 30, and was diagnosed within a better-than-average 10 years, after college, after the birth of her children, and after a normal time period for being entry level in a company. RLR mentions things that are well suited for a narcoleptic- running a small business where you can control your hours is a god-send, same with writing. She also mentioned having a demanding day job, I do myself, but I'm also lucky to work for a company that allowed me a flex time schedule, so I'm able to do my job even if office hours aren't always set in stone, her situation might be similar. If we changed some of the details of her case it might paint a different picture, move the onset in her case up to the regular period of late teens/early adulthood, even maintaining the same 'fortunate' delay in diagnosis, and that puts her going through college and entry into the job market, constantly being late, dozing off, and loss in productivity, her life might have been very different.

      Personally, it's onset happened while I was in the military, and while I took to working extra hours to maintain my productivity, the tardiness and falling asleep on duty eventually lead to numerous Article 15s. My superiors simply couldn't believe that I slept at least 8hours a night and slept with 6 alarms, and eventually them calling me a liar spurred me to go to the doctor to figure out what was wrong. Even after diagnosis, my superiors tried to dishonorably discharge me while the military was medically discharging me, because I "got some doctor to diagnose me so I could be lazy" or I would be told "Narcolepsy's fake, you just need to get some more sleep". It wasn't until I threatened to inform the Inspector General of their actions that they let me lose my career in peace.

      Narcolepsy can be very destructive (by itself, and in ignorance of it, is difficult to diagnose, and if you are diagnosed, is very expensive to treat. Please don't let a handful of "Everything's pretty much ok now" stories blind you to a very serious and life-altering disorder.

      February 8, 2011 at 19:24 | Report abuse |
    • whatnext

      Not quite..., Thanks for the clarification. Your last, your earlier and Natalie's comments provide some education on narcolepsy.

      February 8, 2011 at 21:04 | Report abuse |
    • Dee

      Both my sisters were in early 30's before diagnosed and received successful treatment for narcolepsy. My son was 18.....was percentage of population would that add to stats? Narcolepsy untreated is devastating...be glad your not familiar with that.

      February 8, 2011 at 21:07 | Report abuse |
    • Ladylon

      While it may rarely be diagnosed late in life, it doesn't necessarily mean it developed late in life. The signs may be there for quite some time, but the patient convinces themself that they're out of shape, and it's their own fault they have no energy and doze off in the middle of writing a report at the office, etc. The seriousness of it all may be realized when they are driving on the freeway during rush hour and they suddenly come to, thinking they see Christmas lights before realizing it's brake lights all across the freeway. I should know....to this day I thank God that I 'woke up' in time.

      Just to give you an idea of how the diagnosis is made, I'll tell you about my test. After what was determined to be a good nights sleep (hooked up to so many little wires I couldn't begin to count them), with monitors measuring brain waves and such, the MSLT began. Every two hours I was told to lie down and try to nap. I fell asleep every single time. The longest it took me to fall asleep was 2.5 minutes. The shortest was just under 1 minute. Three of five naps I was in REM state in under 4 minutes. I can assure you, that can't be faked. My neurologist hadn't told me he suspected Narcolepsy, I thought we were just testing for sleep apnea. While I was stunned when he told me I had Narcolepsy, I immediately teared up. He told me not to be upset, that we could treat it. I could only smile and tell him I was relieved that he was telling me I'm not crazy and I'm not lazy. It isn't a joke. And it isn't a 'disease'...there is no cure. It's a neurological disorder that I would give anything not to have. I have to take ampehetamines to control it and I will always have to take them. (Modafanil didn't work for me). While some people think that makes me lucky, after all I can legally take amphetamines, there is nothing fun about it. If you don't have to live with it, count yourself lucky. If you even suspect you may suffer with it, see a specialist. I'm just so very grateful I did before I didn't wake up in time and harmed or even killed someone else or myself.

      February 9, 2011 at 22:26 | Report abuse |
    • exactly

      Exactly. I have Narcolepsy, but one must also understand that most americans are not getting enough sleep. Since Narcolepsy basically causes a person to never get the correct amount of sleep, someone must understand that not getting enough sleep can cause narcolepsy-like behaviors and maybe even "test" out as narcolepsy. I don't buy that she didn't know this until she had three small children. I knew when I was a small child.

      March 8, 2011 at 11:10 | Report abuse |
    • Ladylepsy

      I recently had sudden onset of narcolepsy with cataplexy. I'd fall asleep several times standing up causing a sprained ankle and so on. I knew when it'd come on during the day. I'd feel so weak and loopy, almost like a disoriented drunk, I couldn't even walk without help of grabbing on to someone's arm..then id just kneel down and sleep on the ground or anyplace at that and would sleep for six or more hours. I wouldn't drive because I knew I'd put others and myself in harm. Unfortunately, I happen to believe poisoning of some sort (lead) was going on because the person doing it stole a ton of stuff here and there. Meds, money, necessities and on and on. So to the guy that was in the military, there might be a larger picture to that. I'm 34 BTW and I'd try and fight the sleep but would end up waking up from black outs :-/

      December 22, 2015 at 23:11 | Report abuse |
  6. Meh

    MMMMM Drama

    February 8, 2011 at 11:12 | Report abuse | Reply
  7. Red

    "Narcolepsy symptoms usually appear in teens and young adults, although there are many reports of people developing this disorder later in life."
    So it basically can happen to anyone – what a stupid line to even put into the article.

    February 8, 2011 at 11:14 | Report abuse | Reply
  8. patrick

    woow! this could be me. i have to drink at least two pots of coffee through out the day. but will fall asleep at noon. its especially bad after eating lunch. then when night fall comes, cant sleep at all. i will go at least two days a week lying in bed till 6am only to fall asleep for two or three hours. then the cycle starts all over again. had the same problem starting in junior high school and would sleep through classes, that was before i found coffee later in life at about 19.

    find myself having to pull over when driving for four hours over more to sleep for 20 minutes to stop the drowsyness. on an 8 hour trip i might have to pull over 3 or more times. then something happens and i become awake all night.

    i use to go to bed with a set of ten pound weights and would exercise for hours while trying to sleep as it tended to release something that would allow me to relax at night but this would go on untill 2 to 3 am. i got pretty strong.

    then i found that extreme exercise would combat the fatigue through out the day. unless i started driving then it was time to slap myself in the face.

    i found if i could super excit myeself around folks that would combat the feeling of sleepiness

    ha, on the going to sleep and not knowing it. i usually called this dajavu and my theory was, folks would step into thier pre conscience while awake, then when they came back, all was recorded to seem as if they had experianced it before.

    the sleepyness during driving i recall usualy occurs on trips i ahve taken before. but on newly covered ground i tend to look at the envoirnment for the first time and that keeps me awake. by once i travel a second or third time, its baaaack.

    there are times when coffee doesnt work, no matter how much i drink, but later that evening i become wired.

    i am now 62 and this has been going on for most of my life when looking back. it affected my collage attempts. i would usualy drop out after the first month and half cause of missing classes due to the lack of sleep the night before. it would affect my ability to learn and understand during class. i found i would have to put my self in a tensed state to stay tuned to the teacher or prof. most of the times by trying to write down per vetum of what they said with out understanding it or being able to recall it. when reading text books i found i had to read and then write down what i just read. or sometimes if i started at the back of the chapter it would intrigue me to stay with it.

    i can go on and on with other examples but sooooo, am i afflicted? or just stupid


    February 8, 2011 at 11:16 | Report abuse | Reply
    • johnqpublic

      Wow... you are ... the word I'm thinking of would upset Sarah Palin... which doesn't bother me, but it might upset others. Let's go with your latter thought.

      February 8, 2011 at 12:23 | Report abuse |
    • patrick

      hahaha, your funny, thanks for helping me stay awake.


      February 8, 2011 at 13:28 | Report abuse |
    • anon

      Having to drop college classes a month or two in was routine for me as soon as I got to subjects I couldn't easily keep up with on my own. That's a bit of a red flag for me, but check the Wikipedia page (which does a great job of describing the warning symptoms), and please talk to a doctor. The insomnia, for sure, is a sign (and one that many people don't 'get'... I had horrible insomnia, would go for runs between 2 and 5 AM just to exhaust myself, but that wasn't the reason I was tired. It was a symptom). Ignore the twits. See somebody.

      February 8, 2011 at 19:50 | Report abuse |
    • Dee

      So sorry to hear your story.....seek out a sleep specialist....many years ahead to live a more fulfilling life. My son was diagnosed 1 month before starting college. It took a year to get on the right meds GBH...amphetamines are awful. He just finished his first successful semester. He would have never have finished college. Good luck ....seek treatment.

      February 8, 2011 at 21:13 | Report abuse |
  9. Charles

    Gupta! Again!?!? How many people are affected by this? As the article states, .025-.05%!!! Do we REALLY need an article about "Sleepy? Maybe you are a part of the less fewer than, what, 70000 people who have this in THE COUNTRY"?!?

    February 8, 2011 at 11:19 | Report abuse | Reply
    • Jillian

      Multiple Sclerosis affects roughly 40,000 Americans. 30,000 Americans suffer from ALS (Lou Gehrig's disease) and another 30,000 from cystic fibrosis. Between 150,000 and 200,000 Americans have narcolepsy with around 50,000 being properly diagnosed. In comparison, around 125,000 Americans are suffering from brain cancer.
      Are you saying that MS, ALS, cystic fibrosis and brain cancer are not serious illnesses because not very many people suffer from them (in your skewed percentage of population logic)?
      People with narcolepsy do not suffer from being "sleepy." It is a serious neurological condition that affects many thousands of people and it is ignorance of others like you that simplifies the disease.

      February 8, 2011 at 12:38 | Report abuse |
  10. Scott B.

    I am a person with narcolepsy, and I think this is a great article. It might be a little misleading by implying that medications currently available restore people with narcolepsy to a normal life. The medications have strong side effects, and do not get rid of the symptoms completely, but are very helpful. Regarding the prevalence, narcolepsy is estimated to affect 200,000 – 250,000 Americans. In comparison, MS affects 370,000 Americans. So this is not an inconsequential disorder.

    There is a marathon runner with narcolepsy who has a pretty interesting blog, where she talks about the difficulties of living with narcolepsy and how she manages her disorder. Check it – http://remrunner.blogspot.com

    February 8, 2011 at 11:36 | Report abuse | Reply
    • chemgod

      The medication I was on had such major side effects I had to stop taking it. Now I just make sure to try and stay busy, even if that means just going out and walking, anything to stop the attacks of sleeps.

      February 8, 2011 at 11:40 | Report abuse |
    • Debbie D.

      Thanks Scott for including the blog. I have narcolepsy without cataplexy. My diagnosis resulted from a 19 hour sleep study (and a lifetime of nodding off at incredibly inappropriate times). The medication helps most days but I struggle to stay awake on others. I'm currently taking 250 mg of Nuvigil. I've been experimenting with breaking it in half: one half at 9am, second half at 12:30 pm. That's been working. Reducing caffeine to one cup of coffee a day, a steady exercise schedule and balanced nutrition have helped tremendously.

      To Jen in CA, you're exactly right. It does affect self-esteem. I let work derail my exercise/nutrition routine and I fought a daily wave of sleep that was impervious to vats of coffee, me pinching myself during meetings or cold water on my face. I'm back on track with exercise/nutrition and I feel so much more alert. Lots of luck to your daughter and her big goals : )

      February 8, 2011 at 12:31 | Report abuse |
  11. chemgod

    This may seem funny, but the truth is it's just brutal! There have been times driving in my car and just driving 10 miles to work I had to pull over and nap for 10 mins. I build a sleep time into my commutes to and from work. I can't sit in traffic because I know I will fall asleep. Driving more than 20 minutes is a real problem. When I'm home unless I am constantly doing something I will fall asleep from anywhere from 30 minutes to 2 hours. I can't even stop it, my body just shuts down and there is nothing you can do to stop it. I've been to several neurologists, all have blamed it on mild sleep apnia. The truth is I have no problem falling asleep at night and staying asleep. It's when I'm awake and get the sudden urge to sleep it sucks.

    February 8, 2011 at 11:38 | Report abuse | Reply
  12. Jen in CA

    My mother, my daughter, and I all live with Narcolepsy. My daughter was diagnosed when she was 7, I was diagnosed after she was at age 33, and then my mother at 55. While my daughter's case was the most obvious with complete cataplexy, mine wasn't. Sleepiness was a major obstacle in school and beyond.I struggled so much and my self-esteem took a big hit. Learning about the disease, medication, and joining the Narcolepsy Network made a huge difference in my life. Narcolepsy is a part of my life, yet no longer rules it. I am a very busy, happy mother of three children. I am so thankful so see the article this morning to educate the general public. There are many misconceptions about the disorder, and many people who suffer and are misdiagnosed for years. With proper treatment they can reclaim their self-esteem and pursue their goals. I am thankful that my daughter has received the treatment and support so early in life. She has big goals in life and she will suceed with her Narcolepsy in tow.

    February 8, 2011 at 11:38 | Report abuse | Reply
  13. JMM in Vermont

    I have narcolepsy. I remember falling asleep at almost every class at college. I also had hallucinations on long drives... many times I would see animals on the road. I felt fine when I started to drive but after a while I started to feel tired. I had some minor car accidents and thanks to God that I didn't hurt myself or anyone else. I thought it was all related to my long study hours (I had to study more since I felt asleep at my classes). After college I started working.. then I was falling asleep at work meetings and that was my red flag since I was sleeping my normal 8 hours. I had the sleep studies mentioned in this article and they found that I have narcolepsy (10 years ago). I remember the doctor telling me something like this: "you don't know how it feels to be completely awake... you are constantly a little sleepy...". I took the recommended medication and after like 20 minutes I felt completely awake for the first time! What a difference this has made to my life! I hope this article will help others in detecting this condition earlier.

    February 8, 2011 at 11:52 | Report abuse | Reply
  14. Pam

    I have had times of sleep paralysis over the years; it is very scary. I have never been able to open my eyes during it. Once I realize it, I keep moving my body back and forth until I am out of the paralysis; from what I understand, it is a state between sleep and awake. I keep a pillow on both sides of me in the bed, so I won't get in a position that would cause it to happen.

    February 8, 2011 at 11:53 | Report abuse | Reply
    • patrick

      haha, the guys at the office call me the wiggly man. cause i am always moving or swaying to prevent it from sneaking up.

      February 8, 2011 at 12:03 | Report abuse |
  15. 1eyeshut

    Just the other night I dreamt that I was having trouble falling sleep, when I woke up I found myself driving down the road. Would this be a symptom of narcolepsy and can I use this as a legitimate excuse when I get pulled over for driving erratically?

    February 8, 2011 at 12:06 | Report abuse | Reply
    • Natalie

      That actually sounds like sleep walking. Go to a sleep lab to be sure.

      February 8, 2011 at 12:16 | Report abuse |
  16. Evil

    I had a dream that I ate a HUGE marshmallow... when i woke up my pillow was gone

    February 8, 2011 at 12:06 | Report abuse | Reply
  17. Steve

    My uncle was falling asleep at inappropriate times, finally he went to a doctor to get checked out. Turns out he had a brain tumor and died 1 month later. Even if it's not narcolepsy, it might be something else serious.

    February 8, 2011 at 13:00 | Report abuse | Reply
  18. Sleepy

    OOOOO CAN WE BE DRUGGED FOR THIS TOO??? I looooove when pharma invents problems so people can give them more money, to be poisoned!

    February 8, 2011 at 13:10 | Report abuse | Reply
    • Jon

      You are a fool of the highest order if you think narcolepsy was made up by companies to make more money.
      Without the medication I take for narcolepsy, my life is a short series of being awake punctuated my naps, some as short as two or three minutes. If I am alone and don't set alarms to wake me up, I will sit down to watch TV, fall asleep at the first commercial, and wake up hours later.
      Is it some massive con that I'm unaware of that I have seen the beginning and the ending to most of the movies I have seen over the last decade, but have seen the plot of only a handful? That I am prone to waking up, unable to move, open my eyes, or speak, convinced that I am dead? That it can take me hours to make a simple trip, due to being too drowsy to drive?

      February 8, 2011 at 13:41 | Report abuse |
    • NA

      An ignorant comment from an equally ignorant individual. Try living with these symptoms for even one day, and then tell the 0.025-0.05% of the population who suffer from this disorder that it is a fake disease. Or better yet, go get an actual medical degree so you can be even remotely qualified to make a comment.

      February 8, 2011 at 13:52 | Report abuse |
  19. Sy2502

    I am grateful for this kind of article. Just read the comments to see the amount of ignorance the average person has on this subject. No, people with narcolepsy don't just need to sleep more, for god's sake! It's insulting for those of us who suffer with this condition to be told all we need is a good night sleep. I am with the poster who wishes narcolepsy on each and everyone of you miopic, simple minded people who actually thinks it's just regular tiredness form a stressful life. I have had to combat for years to get somebody, anybody, to listen to me. In the meantime I had to be mocked and laughed at by everybody. "Where did she go?" "Who, Sleeping Beauty? She's taking a nap". "Ahaha!" I have had to take this kind of humiliation by ignoramuses of all sorts for years. Enough already. You have the information. It's an actual condition that needs medical treatment. Now show you have some kind of intelligence by letting that information change your ignorant preconceptions.

    February 8, 2011 at 13:17 | Report abuse | Reply
  20. Erin

    My sister and I both have Narcolepsy. I have had the blood test mentioned in the article and both night/day studies. My symptoms appeared in my late teens, but did not really become a major problem until my mid 20's. In high school I would fall asleep in class at any time, I actually had a teacher who made me stand up to stay awake and I still fell asleep, while standing. In college I worked and attended class, asleep in class if I was awake to go to class. I bartended and that is when the cataplexy began. My hands and legs would stop working for me. I would reach for bottles and drop them or just fall down from my legs "not working". I finally graduated college after 6 yrs and started working. I would take naps on my lunch hour and co workers would find me at my desk sound asleep. The only reason I ever was even tested for Narcolepsey was due to my sister being diagnoised first. Now that I am being treated, life is much better. You just get so tired of being tired. I really hope that my daughter does not have this disorder, so she does not have to depend on a pill like I do to just be awake.

    February 8, 2011 at 13:22 | Report abuse | Reply
    • MGL

      I slept through all my college classes (and high school classes) too. I made good grades,so the professors always let me do it.
      I'm so hoping I can be helped. My physician is just starting me on the diagnosis process; sleep study this week. I don't know if I have cataplexy. My body does tend to stop working in the early evenings. I know it's coming on a minute or two before, so I lay on the couch. Can't move for a few minutes and then sometimes I fall asleep, sometimes I just lay their frozen. My husband started cooking all the evening meals, because he was sick of waiting until my spell was over to eat.

      February 8, 2011 at 14:07 | Report abuse |
    • anon

      It took me 6 years to graduate as well. I could pass out in high school classes and still get good grades; I couldn't do that in college.

      At least I was in a small major with very, very understanding professors and a wonderful student adviser. They worked with me as much as they could, even when my diagnosis was still unknown. When I could work, I really, really did, and that didn't go unnoticed. Thankfully.

      February 8, 2011 at 19:45 | Report abuse |
  21. patrick

    funny this artical seems to have hit more folks funny bone than usual save for the few that were irratated

    to the irratated, get some sleep. ha!

    February 8, 2011 at 13:33 | Report abuse | Reply
    • Sy2502

      Irratated? Go learn to spell buddy!

      February 8, 2011 at 13:44 | Report abuse |
  22. Lance Goodthrust

    this is also a symptom of having a low metabolism not narcolepsy. Just because you're tired doesn't mean a damn thing. In all likelihood you do NOT have narcolepsy. a bad thyroid can cause fatigue. you could also be caffeine addicted. too much it could possibly be and nothing serious at that. doesn't mean you can't get tested. just don't jump to conclusions like this stupid headline does.

    February 8, 2011 at 13:35 | Report abuse | Reply
    • Sy2502

      What are your medical credentials for making this diagnosis?

      February 8, 2011 at 13:46 | Report abuse |
    • MGL

      Part of the diagnosis for narcolepsy is a full lab workup. I'm just starting the process and my thyroid was ruled out.

      February 8, 2011 at 13:57 | Report abuse |
    • anon

      Just because you are tired, no. Bouts of sleep paralysis, amongst other things, and there's a damn good chance. As well as bouts of insomnia, catalplexy, etc.

      Fight for the sleep test if you do. Please.

      But as someone else mentioned, of course a lab workup is going to be done first.

      February 8, 2011 at 19:43 | Report abuse |
  23. Sylvia

    My husband has narcolepsy. Initially, his symptoms weren't taken seriously because he is paralyzed (C8) and uses his arms extensively for wheelchair use. Experts told us by using only the "small muscles"of the arms you can become fatigued as opposed to those who could walk and use large muscles. They thought it was a normal consequence of paralysis. Through my insistence that he not give up and a sleep specialty doctor at the University of Washington, he got diagnosed. The meds have given him back his life. This article doesn't state the high cost of modinafil (Provigil). It is $675 PER MONTH! No generic as of yet.

    February 8, 2011 at 13:51 | Report abuse | Reply
    • MP

      Provigil goes generic in 2012. Yippeee!

      February 8, 2011 at 17:29 | Report abuse |
  24. 14401

    The first attack on narcolepsy was in front of a gambling machine in Vegas more years ago than I can count. It scared me, but didn't have any other symptoms until many years later. But, when they came on, it was strong and really scary. The Cataplexy is a whole other story for people who have both. It's very dangerous. The first time it happened, luckily I was setting the back seat of a car and just fell over, no warning. I awoke just s few seconds later and wondered what happened. I didn't even say anything to my hubby. If you suspect you have any of these, make the Dr. do the blood test for the marker for both problems. I have the marker for both. I've always been a champion sleeper, but this isn't normal and should be addressed quickly. I agree with some of you when you say Provigil helps, but sometimes it doesn't. I have just started Nuvigil this week and so far so good. Thanks for great article. Here's a good one. Think I'll go take a nap. Just kidding.

    February 8, 2011 at 14:00 | Report abuse | Reply
    • narcats

      security pretty good in vegas–when son had his first cat attack during this trip with in seconds security was there wanting to help- we explained what was happening and that we can deal with it- they stayed around until it passed– for the next 2 days and a few more full to partial attacks there was always someone following us around at baileys–my kingdom for a good nights sleep

      February 8, 2011 at 15:34 | Report abuse |
  25. 14401

    I forgot. The Dr. said he wasn't sure if our insurance would pay for the test. They did, so press on this. It's for your own peace of mind. At least I now know why I fall asleep suddenly.

    February 8, 2011 at 14:02 | Report abuse | Reply
  26. MGL

    This article has me really excited. My sleep study is this week, and I would LOVE to find something that would help me stay awake. Whenever I sit still and quiet I'm in danger of falling asleep. I frequently have problems with falling asleep while driving short distances. I can' sit through a work meeting and I slept through most of my college classes. Right now I'm bouncing my legs just to keep myself awake.
    Don't know if I have cataplexy though. I get periods of time when I am awake but can not move, but I have a minute or two of warning before they come on and I usually end up falling asleep. Like, 5-10 minutes of laying there, unable to move, and then I'm asleep. (Usually around 5-6 p.m.).

    I sleep really strange as well. My husband says I talk and move all night long.

    February 8, 2011 at 14:15 | Report abuse | Reply
  27. catnapper

    Unfortunately this article says most people can have a normal life if they can take medications. I am not one of those people and my Narcolepsy has totally disabled me. Many people cannot tolerate Provigil or Nuvigil and Xyrem costs over $6000 a month. Luckily, most insurance companies can bring that cost down to around $100 a month, but that is still quite a bit when living on disability.

    For those naysayers out there, I wish you could walk a day in my shoes. I never feel well and am sick of being exhausted all the time, never knowing when I am going to simply fall asleep.

    February 8, 2011 at 14:32 | Report abuse | Reply
  28. Molly Beason

    I feel sorry for these people who think narcolepsy is a joke.
    My husband who died in 1985 had narcolepsy. He had a heart attack. There wasn't much understanding of the disease
    years ago. He finally had the big test in Univ. Hsp. in Iowa and was able to go on disability as he couldn't tolerate the
    only medicine at that time.

    February 8, 2011 at 14:45 | Report abuse | Reply
  29. Checkit Out

    You've gotta get those ZZZZZZZZZZZZZZZZZZZZZZs!

    Jeepers! Don't Become Day Sleepers! Get it checked out soon!

    February 8, 2011 at 16:03 | Report abuse | Reply
  30. Rebecca

    I was diagnosed with narcolepsy two years ago at age 24 after years of falling asleep during class and at the wheel. Many people are quick to call me lazy because they simply don't understand the disease. However, with treatment I am able to hold a job and a somewhat normal life. I wish people would take it more seriously.

    February 8, 2011 at 16:55 | Report abuse | Reply
  31. slitg

    Thank you for this article. I wasn't diagnosed unti halfway through college, and was misdiagnosed before that with depression. Probably a result of the frustration of not being able to keep awake to finish work I knew I was capable of, but I'm not the same person as I was before I started taking medicine for that. Anyway, I had a wonderful doctor who finally fought the insurance company until they agreed to cover a sleep test. It took her days of being on the phone with them. And in the end, it took me 6 years to graduate as well.

    The more awareness of this exists, the better. I had most of the classic signs to boot. I'd rather no one else go through the same experience I did, and even still it's hard to describe to someone how you can have insomnia while you're narcoleptic. And now that I'm on medicine that works perfectly fine, it's also hard to convince certain people that I'm functioning perfectly well. A double-edged sword; you either aren't taken seriously or treated with kid gloves.

    February 8, 2011 at 16:59 | Report abuse | Reply
  32. MP

    It's fantastic to see an article about a sleep disorder besides sleep apnea or insomnia!

    After 20 years and 3 sleep studies (all with MSLTs), I am still undiagnosed. Either narcolepsy or hypersomnia but none of the five doctors I've seen can figure it out. Modafinil was great for 2 weeks but now it's like taking sugar pills.

    This article fails to mention the cost of either modafinil (about $10 per pill; I take two a day) or Xryem (approx $30,000/year). If you have narcolepsy, I hope you have good health insurance. If not, you better hope Obama's plan stays in effect or you may never be able to get it! I can't an insurance company wanting to cover someone who needs at least $35,000/year in medication.

    February 8, 2011 at 17:21 | Report abuse | Reply
    • anon

      I had to save, as a broke student, for a month to afford just my copay on Provigil. It didn't work, and shortly thereafter my doctor finally relented and gave me a script for more traditional stimulants.

      Right now amphetamine (Adderall) is the only thing that works, but it is sometimes difficult to find a pharmacy with enough in stock when I'm traveling. I also had to fill out a long form justifying my prescription for it for my doctor to have in case state investigators came calling, and I had to skip work for two days when my new insurance there decided I didn't need it since I was over 18. They also think I don't need to see my doctor once a month who, of course, has to write out the prescription by hand with his DEA number.

      With all of the wretched hassle of trying to get a simple treatment while I have insurance, I really feel for those who don't. I can barely afford to keep it myself, to the point of cutting back on food and about everything else. But if I don't have it, I'm screwed. And I'm a lucky one who found something that works, even if it has plenty of downsides.

      Trying to fight with my HMO again to see a specialist. I'm not optimistic.

      But our system works fine.

      February 8, 2011 at 19:40 | Report abuse |
  33. SBB

    Those who think narcolepsy is a joke are invited to get in the car with my husband and drive more than 2 miles.

    He fell asleep at our wedding reception – while standing up – at 2 in the afternoon. He's also fallen asleep while playing a rock concert. And once at a stop sign, for 15 minutes. Good times!

    February 8, 2011 at 17:37 | Report abuse | Reply
  34. Mabs

    I always tell everyone that I was born tired. I can fall asleep anywhere anytime. I get a full night of rest but it doesn't matter, I am still tired. I was finally diagnosed after I fell asleep every time during the daytime test. I take nuvigil and it helps. But, I would love to not feel tired all of the time. It definitely affects every aspect of my life. Trust me, this is a real dignosis and I do not wish this on anyone.

    February 8, 2011 at 19:05 | Report abuse | Reply
  35. sleepstate

    I was diagnosed with Narcolepsy with cataplexy when I was 23. At first the meds helped, I could work for a few years. But the meds stopped working and my condition got worse especially after having my 2nd child. To make a long story short I am 45 now and completly disabled. I have a great deal of trouble thinking and paying attention to anything. I sleep maybe 2 hrs at a time and thats with xyrem. I spend all day fighting constant extreme tiredness yet a lot of times I cant actually fall asleep. I have no friends because I just dont have the energy to be a friend. I have no life what so ever anymore. NOw I suffer from extreme depression and anxiety to. Narcolepsy can rob you of living, its no joke. I ve missed so much of my sons life and its heartbreaking. I live on disability which is $600 a month. I tried several times to go to college but just couldnt make it. Its hard not to think how much more living I could do if there was a cure or even a treatment that works. Narcolepsy for me has devastated my life completely. And its so hard to try and explain it to anyone including my self.

    February 9, 2011 at 01:10 | Report abuse | Reply
  36. Kerri

    I have narcolepsy. I started seeing symptoms in high school and college and they just kept getting worse. My husbands family used to tease me all the time for falling asleep at family gatherings. It got worse as the years went on. Finally in my mid 30's, to be able to keep my job, I went to the doctor (I had been many times before and been told the same thing as many of you, that I was tired because I had young children or needed more sleep) and he diagnosed me with narcolepsy. I took provigil for about a year then switched to Nuvigil. I like Nuvigil better. It seems to last longer and does not make my heart race as bad as Nuvigil. The thing about Narcolepsy for me is, I don't feel tired. But if I sit still to read or watch tv or work on a computer or drive, within 20 minutes I am falling asleep. No amount of caffiene, pinching myself, chewing gum made a difference. It is uncontrollable. My husband just got used to elbowing me every 3 or 4 minutes during church to wake me up. It embarrassed me for a while but I realized there was nothing I could do about it. I typically take my pill after I get to work. If I get stuck in traffic too long I regret waiting. I can usually talk on the phone to stay awake as long as I am actively talking and not just listening. Glad to see an article on this to bring some attention to the issue.

    February 9, 2011 at 01:43 | Report abuse | Reply
  37. Bssrwssr

    There is a link between H1N1 shot and kids' narcolepsy in Finland. Kids started having narcolepsy after the shot and it has now been confirmed.

    February 9, 2011 at 03:52 | Report abuse | Reply
  38. Youni

    While narcolepsy is a seriously under diagnosed condition, does the headline "Daytime sleep attacks 'equals' narcolepsy" mislead readers? Excessive daytime sleepiness associated with untreated sleep disorders such as apnea and restless legs syndrome are probably 100x more likely. Lifestyle schedules and insomnia are also 100's of times more common than narcolepsy? Narcolepsy is just one of several similar serious sleep disorders. How many people have trouble waking up in the morning (without the other symptoms of narcolepsy) - hypersomnia and delayed sleep phase disorders may be just as common. Without the scary symptoms such as hallucinations and paralysis, it is certainly as under diagonsed as narcolepsy,

    February 9, 2011 at 05:53 | Report abuse | Reply
  39. 7 hours a day

    OK, if you are usually getting a full 7-8 hours of sleep (uninterrupted) between 10pm and 9am and you get these sleeping bouts during the day, i can understand there may be sleeping disorder. But i think there may be far too many people who just don't get enough sleep at night (less than 6 hours) who then are tired or sleepy during the day. That's simply not having enough sleep. I don't think the writer of article asked some basic questions. But maybe because she's a doctor, that's been already ruled out?

    I raise this because I have the latter problem. When I was younger, I can still operate fine on 4-5 hours of sleep. As I got older and after becoming a father, I was really tired during the day. What parents ever have enough sleep?

    After seeing a few doctors including going for sleep apnea tests, the last one simply asked how many hours of sleep was I getting. BINGO!

    He recommended 7 hours of uninterrupted sleep. Too little or too much sleep are both harmful. When I do get consecutive days of 7 hours of sleep, I am sharp and quick. I still struggle with lack of sleep but i try to get 7 hours 2-3 times a week which can tie me over.

    February 9, 2011 at 09:03 | Report abuse | Reply
  40. JG

    Narcolepsy is horrible. To anyone who thinks it's a joke or think people are exaggerating, I wish you could experience it for even just a couple of months. Like so many others have said, it is much more than just being "tired" during the day. I was diagnosed with it about one year ago, at age 30, but experienced the symptoms for years. I was poked and prodded for a long time before one doctor finally said I should do a sleep study. I'm glad I did, because I can manage it better now, but I still feel like crap most of the time, and it is not because I'm not getting enough sleep at night. I take Nuvigil to stay awake, and it helps, but it is by no means perfect. It only lasts 12 hours, and I'm still sleepy during the day. It affects everything from personal life to work. I got so frustrated with myself because I constantly forgot everything from deadlines to appointments, names, just generally couldn't think straight, I had no energy to work out, did not want to socialize, etc. because I just felt like I needed to sleep ALL the time. Every day after work, as soon as I sat down at home, I'd fall asleep. But, and the key here is, no matter how much sleep I got, I NEVER EVER felt rested. It is truly a terrible feeling. Then, when I was diagnosed, I felt so much panic because I realized that never again would I feel rested and ready to take on the world. It was a suffocating feeling to know that I'd never feel well again. I had spent my younger years in age group swimming, was always very active, and now I had no energy at all and felt as though I was losing my mind from exhaustion.

    I still have trouble coping. I have periods of time where I have hallucinations many times a night, every night, for weeks on end. I'm going through that right now and I feel awful because my sleep is so interrupted, I feel like I am not sleeping at all. In addition, I feel even worse because it is affecting my boyfriend's sleep. He only finds it amusing so many times when I jump up in the night thinking something is in the bed or in the room, or I sit up screaming at the top of my lungs (so loud that my throat hurts the next morning) – but rarely do I know or remember what I've done.

    Thinking back, the hallucinations began when I was much younger – middle school or earlier. I've always been a sleepwalker, sleeptalker, etc., and now I know that some of those were actually hallucinations. I have never experienced cataplexy, but I have had the (dis)pleasure of sleep paralysis. It is frightening. But the hallucinations are the worst – they are absolutely terrifying sometimes, and the sheer number of them leave me feeling like I am sleepwalking during the day on a regular basis.

    As others have mentioned, narcolepsy is not easily diagnosed. A sleep study and MSLT are both required for diagnosis, and for medication to be dispensed. The medications for treatment are controlled substances, so regular doctor visits (mine are every 2 months) are required. Heart tests are also performed several times per year due to side effects, and getting the prescription refilled is a pain in the neck – it cannot be refilled over the phone or electronically, I must go to the doctor and show a photo ID to pick up my script every time. Only a 30 day supply is allowed. Scripts cannot be filled out-of-state. It is terribly inconvenient, not to mention I'm not crazy about taking such a drug, but it became necessary just to live my life on a daily basis.

    As a side note, most of the medications for treatment actually greatly reduce the effectiveness of birth control, and are not approved for use during pregnancy. So you must be extremely careful, and plan your pregnancy so you can switch to Xyrem beforehand, which I believe is the only drug approved for use during pregnancy. However, it is exorbitantly expensive.

    To those who think it's not real, or think every parent has something like it, you are very, very wrong. This was my first time posting a response to an article, and it was a long response, but I cannot underscore enough the severity of this terrible disorder. To all the narcoleptics out there – at least we know what we feel, and that it is unfortunately a very real and very devastating thing to deal with day in and day out. Hoping for a cure someday.....

    February 9, 2011 at 09:59 | Report abuse | Reply
    • SF in MN

      I too am dealing with the hallucinations, which are extremely scary at times and can happen more than once per night. I have had these since about age 12. My husband thinks its fun to argue with me about whether or not something is really there. I get angry with him because to me it is very real at the time it is happening. I hate waking up screaming or terrified because I see something in the room with me only to have to calm yourself down because it feels like your heart is going to pound right out of your chest. Sometimes I have no recollection of them at all but other times it sticks with you for days. I had a sleep study in my early 20s and was diagnosed with sleep terrors and that my brain waves were the same when I was asleep as they were when I was awake – whatever that meant. Fast forward 15 years...two kids, a car crash from falling asleep behind the wheel, and being able to nap/sleep anytime or anywhere, I had a second sleep study/MSLT last year and was finally diagnosed with hypersomnulism and narcolepsy. I am taking the amphetamine route as it works for me for now, but I was told that your body will eventually get used to them. It definitely is a pain to get the refills for the exact reasons you stated. I am still sleepy in the afternoons and I know not to drive if I am anywhere near sleepy, I only had to crash the car once to learn that lesson. I also still get the hallucinations and they can last for up to 3 weeks, and while they are still very scary to me, they are not as often as they once were. I do wonder how hereditary these are as I have two sons ages 10 and 12 and do not wish this on them or anyone else. Thanks for posting about the hallucinations, its nice to know I am not alone in the world with these.

      February 9, 2011 at 16:54 | Report abuse |
    • jmg

      thank you for your comment. ditto on every word. it was like I wrote it. validation is a good drug for sure!

      March 22, 2017 at 18:28 | Report abuse |
  41. Rose KT

    I was diagnosed with narcolepsy two years ago. Onset in high school and college was a really big challenge but I managed. One thing to note is that the severity of narcolepsy can vary widely between people. I experience cataplexy only every few months, only in my face and hands, and only while laughing VERY hard. But many people fall down regularly (this has happened to me twice in my life – I'm 24 now), or have more severe cataplexy.

    Sleep attacks also vary between people. As you can tell from the comments, some people have attacks that occur almost constantly. For me, every day is different. When I'm not on my meds, sometimes I will nod off 6-7 times in a day, but sometimes I don't nap at all. I also have no problem at all reading or watching movies, which are typical situations where narcoleptics fall asleep, but I do fall asleep in live concerts (I fell asleep at the Transiberian Orchestra Concert...if you've never been, they are pretty loud with tons of flashing lights and stuff).

    Also to note when people talk about the medications, there are two types. You can be given amphetamines, which are a pain to get, and have tons of side effects, but are the only thing that work for some people. Or you can get Provigil/Nuvigil/Xyrem which have fewer side effects and are less regulated, but don't work for some people. I'm personally on provigil – I tried out Nuvigil and just liked Provigil better. Also, Provigil will be generic next year (YES!!!!). I'm lucky that I have good insurance that is willing to cover the medication because it is currently very expensive. The drugs can be fantastic – when I first started on them, it was literally like I was getting my life back. Now, they still work pretty well, but I do usually end up taking one unplanned nap a day.

    Wikipedia has a pretty fantastic article about narcolepsy (mentioned in one of the above comments as well) if you want to know more about what exactly an MSLT is, or the differences between the drugs.

    February 9, 2011 at 13:00 | Report abuse | Reply
  42. playcj2oo7

    I am surprised by all the negative comments on here. I have an 8 yr. old son that has Narcolepsy with Cataplexy and this is not a disease to be laughed about. This has been very hard and life changing, and continues to be. He has been classified disabled by his school and by the state. He is now only going to school 1/2 day now due to his sleepiness. His grades have suffered the most. He was diagnosed November 2009 and before his diagnosis he was an a/b student. It got so bad that his teacher was having to hold his hand to walk down the hallway because he would fall due to Cataplexy and the excitement of getting to go out of the classroom. He has had the most awful hallucinations, and he recently started sleep walking. He is a joy to have and has taught me so very much about life and what living is. I love him very much, and I think this disease deserves to be respected more than this. "Narcolepsy" tired is WAY more than what a "busy business person" tired is. I am a single mother of 3 and I work full time, I know what tired is and I feel for my son because HE knows tired!

    February 9, 2011 at 22:01 | Report abuse | Reply
  43. Gayle

    When in doubt check it out. http://www.nlm.nih.gov/medlineplus/sleepdisorders.html
    Please use medlineplus.gov for patient or consumer medical information and if you want biomedical information in scientific terms (i.e., studies), please use http://www.nlm.nih.gov . Retired Clinical Medical Librarian.

    February 16, 2011 at 19:43 | Report abuse | Reply
  44. Anne-Marie

    I love Dr. Shives; she's my sleep specialist and she is wonderful. She takes so much time with her patients, listens, and is really interested in helping. I found this article via a narcolepsy support board, and was so surprised and delighted to see this article. Rock on, Dr. Shives!

    February 22, 2011 at 00:43 | Report abuse | Reply
  45. ABArtist

    I would love to know if there is a disorder that includes cataplexy and sleep-onset hallucinations – other than narcolepsy. I've had sleep-onset paralysis and hallucinations since I was a grade-school kid; at the time I assumed everyone had them. By the time I was in college, I also had regular cataplexy – at least a few times a week. That was worst in my 20's and 30's – seemed to reduce in my 40's, though I have as many hallucinations as ever.
    However, I am not uncontrollably sleepy during the day. It's true I can't sit through an hourlong TV show or read more than a few pages of a book without falling asleep. I'm horribly sleepy after meals and usually nod off a bit – all my friends think it's hilarious. And I won't drive longer than about half an hour because I cannot control my sleepiness in the car, particularly if it's sunny out. I'm much more sleepy on sunny days – might just be the warmth?!
    However, that said, I've never fallen asleep at work despite loads and loads of double shifts, and even working through the night and all next day fairly often during the earlier phase of my career. And I've never fallen asleep while chatting, or during a meal. (Did fall asleep during Lolapalooza one year though, and no, I wasn't on anything!) I'm now 44 and have never considered my life dysfunctional – on the contrary, it's wonderful – I'm happy and I've always felt healthy as a horse. Since college I've assumed my quirks were caused by narcolepsy, but I've never bothered going to a doctor to see. (Also afraid of losing my health insurance or drivers license!) Just wondering if a less-than-catastrophically sleepy person, with all the other symptoms of narcolepsy, is likely to have narcolepsy, or if there are other possible causes? Anybody know? Thanks!

    February 23, 2011 at 20:23 | Report abuse | Reply
    • Disco

      You sound like you have narcolepsy, just not as bad as some people. A lot of narcoleptics are mostly functional and don't ever get diagnosed. From what I've read, having cataplexy is a guaranteed diagnosis of narcolepsy. Some narcoleptics don't even have cataplexy or it is very mild. You also have all of the other symptoms...so....yeh, don't be in denial.
      I have narcolepsy symptoms, but have never been officially diagnosed. I have had the overnight sleep test, but not the MLST. My sleep was screwy – lots of REM, lots of awakenings. I have day time sleepiness, sleep attacks daily, very mild cataplexy, mild sleep-onset paralysis and hallucinations. I'm also tired all of the time. I have had the paralysis and hallucinations since I was a kid too. It was scary then, but you get used to it after a while. My daytime sleepinessand tiredness is bad, but it is partly due to not getting enough sleep at night. The thing is I never get enough sleep at night since high school. I always use that as my excuse. I fall asleep at work after lunch every day, while driving on occasion and at other weird times. The thing is most people that know you will kow that something is wrong, until they get used to it. It is not normal. I have also tried to blame other health issues: anemia, allergies, gerd, blood sugar levels, etc. I'm relatively healthy and in my 30s. I've even run marathons.
      I've started taking caffeine pills, which are much better than coffee. I usually try to stay off of coffee and tea, but my symptoms get worse when I do.
      It's recently that it's gotten bad which it does from time to time. I have a lot of things coming up and I'd like to have children soon. I know I can barely deal with everyday life with the tiredness. I've come to terms with the fact that I probably have narcolepsy. I've made my appointment to get my diagnosis and treatment. The sad thing is my father died in a vehicle accident. There is a good chance that he had narcolpsy too. I wish that I had gotten my diagnosis earlier so that I could have helped him. I did mention my sleep issues, but it didn't go further than that. I think my parents were in denial too. I wish more people with it would just face reality.

      February 26, 2011 at 16:35 | Report abuse |
    • Michelle

      I have narcolepsy and it's being busy and engaged that keeps you awake so it's not surprising you haven't fallen asleep during all of the times you mentioned. I would say you absolutely have it. Go see a specialist, you will feel much better with treatment.

      September 28, 2011 at 17:23 | Report abuse |
  46. snewzer

    Narcolepsy sucks and I don't wish it upon anybody. I was diagnosed with it in my 20's although I had suffered from it my whole life. I am no longer able to work, had to quit college, and eventually lost my drivers license because of it. When a narcoleptic gets tired, compare that to a non-narcoleptic being up for three days. So don't whine and complain about being tired after a 8-10 hour work day. Come back in 72 hours and then I might sympathize. But go ahead and think that "we" are "lazy people". Perhaps sleeping through ones stupidity is a blessing in disguise.

    February 28, 2011 at 01:45 | Report abuse | Reply
  47. slacker

    Great read , I am going to spend more time reading about this subject

    April 29, 2011 at 10:14 | Report abuse | Reply
  48. Brandy

    I came here after trying to research what I believe to be hypnagogic hallucinations. I am having them a lot. Sometimes 5-6 nights a week. Initially I thought I was just seeing spirits in my room...it was so real. I often wake my husband and he gets a little upset because it upsets his sleeping. I am 37 and for quite awhile I have talked about how I feel so tired all the time. I do not fall asleep without allowing myself to but have that leisure since I do not work. I go to bed usually at 10 pm and wake at 6:45 to get my children ready for school. I believe the night hallucinations are making me tired excessively during the day. I take my children to school and often times I am back in bed at 8 am and sleep until 11 or 12 in the afternoon. I do feel much better after napping though. I feel that I usually fall asleep quickly upon going to bed at night. I do not have cataplexy and again do not fall asleep when driving but do get quite tired....but control it until I am able to sleep. Everyone says I am so tired due to having kids as well...I am home alone all day though until about 3:30 alone so I do not feel it is that. I wonder if any of you sufferers think this could be narcolepsy, I pray it is not but do wonder why I have so many hallucinations. The hallucinations have been occurring for about 10 years now. I also have looked at the clock and often times my hallucinations are about 5 hours after I go to bed. Hypnagogic is suppose to be at sleep onset and hypopomic just before waking. Any advice is appreciated. Oh, I also realize now that they are hallucinations and am able to remind myself when I see someone or something in my room.

    May 11, 2011 at 18:14 | Report abuse | Reply
  49. Naroleptic

    I am a narcoleptic and I am still not diagnosed. This is insane and it is ruining my life. There is not a single day without any nap. It is such an great article and I am encouraged to do treatment of this. I don't know what held me back for years. But I will be soon going for the checkup. I read this great blog for narcolepsy .. http://www.nisfornarcolepsy.com/ .. thanks for the writer for putting this up. Cheers!

    June 13, 2011 at 09:39 | Report abuse | Reply
  50. Sleep disorder definition

    The reason why 'm we worn out continuously i recently got up. Insomnia issues are stored on the rise. nOwadays, most people tend to be tired all day long, get health problems and so are being attacked simply by ...Narcolepsy

    January 29, 2012 at 20:18 | Report abuse | Reply
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