Why the public is wrong about narcolepsy and about me

I remember the day I realized that I needed to seek professional medical help. I woke up halfway through a scheduled organic chemistry exam, dazed and confused and still in bed wearing a nightgown that read, “Sleep All Day, Party All Night.” I panicked and ran to class, still dressed in my seemingly ironic garment, only to find the lecture hall full of staring, accusing eyes, and no empty seats. It was an infamous nightmare come true, and it happened to me more than once. I soon found out that narcolepsy was to blame.

Contrary to what my nightgown said, I had not been up partying all night or any of the other times that I had slept through classes, meals or get-togethers with friends. In fact, I was sleeping on average about 14 hours a day, every day. Regardless of my restful habit, I could not keep my eyes open much of the time and was always ready to jump on the chance to doze. My primary care physician suggested scheduling a sleep study, and I readily accepted the suggestion, desperate for any kind of resolution to my problem.

After 24 hours stuck in a strange room covered in electrodes and tape, I was ready to go home and the doctor was ready to make a diagnosis. When he told me I had narcolepsy and would have to take a stimulant for the rest of my life, I was highly disturbed and skeptical. When I heard the word narcolepsy, I pictured a sleepy, middle-aged man dropping to the floor mid-conversation, unable to stay awake and unable to be woken up. How could I have the same disease as the imaginary man in my head? I never fell down from exhaustion; I never needed someone to wake me up after collapsing.

Now that I have lived two and a half years with narcolepsy, I have come to realize that many of my conceptions, and those of my friends and family, were grossly inaccurate. On a very basic level, I had never thought about what caused narcolepsy or why people fell asleep randomly.

I now know that it is actually a neurological disorder caused by the brain being unable to control a constant sleep-wake cycle. The brain essentially sends signals telling the body to sleep at random times instead of regulating sleep as it should. Nobody knows the exact cause yet, but researchers have recently discovered that narcoleptics don’t have the chemical hypocretin, which is partially responsible for alertness and sleep standardization. They have also often found abnormalities in the areas of the brain responsible for REM sleep regulation. There is a lot of research currently being done to study narcolepsy, but for the time being I am stuck taking medication three times a day and simply not knowing why I am the way that I am.

I also used to think that a diagnosis of narcolepsy depended simply on whether the patient often fell asleep while standing. Turns out, one doesn’t ever have to collapse to be diagnosed with the illness. To be diagnosed, according to the International Classification of Sleep Disorders, the patient has to feel extreme sleepiness during the day for more than three months, as well as either cataplexy (sudden loss of voluntary muscle control, often caused by strong emotions) or a tendency to fall asleep unusually quickly, which can be proven by a variety of sleep studies. I, for example, was asked to take a 20-minute nap every two hours for 10 hours, and on average I fell asleep in about four minutes, when any time under five minutes is considered to be pathological. Normally it takes people about ten minutes to fall asleep — six minutes if they are sleep-deprived college students.

In addition, I realized that narcolepsy also comes along with other terrifying symptoms. For example, when I’m tired, I often feel that I’m living in a dream because my imagination starts running wild and cannot distinguish my thoughts from my reality. This is called a hypnagogic hallucination, and is evidently quite common with narcolepsy. Another common symptom is sleep paralysis, in which people physically cannot make themselves move shortly after they wake up.

After learning about the disease, I find the misconceptions of others to be somewhat offensive. Friends refused to believe that I was a narcoleptic because I didn’t ever fall over when talking to them. Teachers made jokes at my expense for falling asleep in class. Acquaintances told me that I was just lazy, and that nothing was causing me to be tired except for my lack of motivation.

While it is true that narcolepsy is classified as a rare disease and only affects around 200,000 Americans, movies and TV shows exaggerate the symptoms to highlight these misconceptions and make narcolepsy look like a joke rather than a disease. While I understand the entertainment value of unexpected collapses, the disease hardly feels like a joke to me when I am popping pills just to stay awake during the day.

The misconceptions of narcolepsy are harmful to not only the patients but also to the potential progress of research in the field. If people don’t take it seriously, advancing research will become even more of a struggle than it is today. Narcolepsy is more than YouTube makes it out to be.

Megan Crants is a junior Writing Seminars and Cognitive Science double major from Nashville, Tenn. She is the science columnist for The News-Letter.

41 Responses to "Why the public is wrong about narcolepsy and about me"

  1. Jodi Spilde   March 21, 2013 at 12:23 pm

    This sounds like it could have been written by me! Good luck with your journey. It is a hard, crazy life!

    Reply
  2. Patricia Frerking   March 21, 2013 at 1:55 pm

    Hi Megan,

    Thank you for helping to inform others about Narcolepsy! As a neuroscientist and spouse of a narcoleptic who has done lots of research about narcolepsy research I would just like to add one clarification: at least 25% of people with narcolepsy do not have deficiencies in hypocretin. It may seem like a small distinction, but it is huge to those narcoleptics who fall into this category. Keep up the good work!

    Reply
  3. Heidi Balletto   March 21, 2013 at 2:57 pm

    I am so sorry to hear about your struggles! I also have narcolepsy and have had it for as long as I can remember. I know I had it in middle school and my parents would always yell at me for being tired and “lazy” my step mom would have a heck of a time getting me up for school even up to 12th grade. I was not diagnosed until I was about 30. I really wish there was something I could do to raise awareness! Because the criticism gets really old. Also it would be nice to have a cure!
    Have a great day!
    Heidi

    Reply
    • Carl Miller   March 26, 2013 at 10:35 am

      I can’t agree with you more. I noticed my sleep issues were really bad when I was about 13 but looking back even before that I can see now that I had symptoms. So 18 years of feeling like I was lazy, non-motivated, and failed serious relationship because of the issues, a mis-diagnose of ADHA and a humongous amounts of near death driving experiences until at 30 a friend “forced me to go get checked.
      2 –24hr MSLT’s later – Narcolepsy…. Sleep Latency 2-3 minute average, some under a minute.
      Now on Provigil probably for the rest of my life. I still have “bad days” but I actually feel like I have a life now. Although friends and family still have the stigma that its not serious and my only problem was that I “get a little sleepy easy” because I don’t randomly fall over asleep.

      Guilty though as I am because before I was diagnosed I thought the same. People don’t realize if I’m in a rush some days and “forget my pill” how serious it is. When I’m running home in a rush they are always like “take it later” … “Skipping a day won’t hurt once”… Little do they know that it can end up bad if a “sleep wave” as I call them, hits randomly.

      Props to my fellow narcoleptics and our continued battle to stay awake to enjoy life.

      Reply
      • Joe   October 7, 2014 at 2:40 pm

        I would just like to say, “I am sooooooo glad,as unfortunate of a disease as this is,that I am not alone.” I too was a “lazy” child in school, was not paying attention enough as I was always day dreaming, who just was very active, therefore that was why I was tired. Then I was a “lazy” teenager in high school. Then as an adult, and after all my “day terrors”, night terrors, I started to really believe that was what it was. I was just overworked, and being lazy. Drank TONNES of coffee until deciding to get the sleep tests. After being told that I had an average of 3.7 mins before falling into REM sleep which after taking modafinil, and while taking it, my average changed to 1.6 min, and a couple in under 30 secs, was 100% narcolepsy. I was(am) relieved to know what is wrong. I too am guilty of associating the disease with Hollywoods misperception.

        I have had the DNA marker testing. I do not have that marker or the lack of hyper cretin. I think I am in one of rare categories. The meds are not working the way we want them too. And This just sucks. ha

        I face still all the criticism of “well I get really tired too!!!” One day society will actually understand the importance of finding a cure and how scary or dangerous this really can be.

        I truly hope that all of us will be cured one day. (sorry if this is confusing as I am doing this while trying to nap) ha. Cheers

        Reply
  4. Sue Thward   March 21, 2013 at 5:54 pm

    My 15 year old daughter is in the process of being diagnosed now. Blood tests show she has the HLA type for narcolepsy and the sleep study is soon to follow. I’m a little relieved because the hallucinations she had were very scary and I thought she may have had schizophrenia. Then again, I’m scared because I don’t know what implications this has for her future. However, I’m pleased to see your education because I wondered how she could possibly succeed in her ambitions with this condition. Thankyou for the first description of narcolepsy that I’ve totally understood.

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  5. APRIL TERRAZAS   March 21, 2013 at 8:19 pm

    OMG. Thank you so much for your story–until now I’d never read anything that sounded sooooo much like my life! I felt like I was just reading about my own personal struggle! I feel you, believe me!

    Reply
  6. Kat   March 21, 2013 at 9:18 pm

    I’m a salaried employee who was always late to work in the morning. When my director finally called me to her office, I explained that I have narcolepsy and it’s hard for me to get to work early, but that I stayed late to finish my work. This master’s level nurse-director told me that I needed to go to bed earlier so that I could wake up earlier like everyone else in the department does. That’s when I had to invoke my rights under the American’s With Disabilities Act and also put an intermittent FMLA in place to protect me from people who just don’t have a CLUE!

    Reply
    • Carl Miller   March 26, 2013 at 10:38 am

      I failed a physical and lost an opportunity for a great secure paying job with a local company because even though I am treated the medical examiner saw “narcolepsy” and told me he was afraid “I’d fall asleep and fall into a machine”. Even though I explained we don’t all randomly just fall over asleep.. Still the job offer was conditional on passing a physical so there was nothing I could do. Props to you.

      Reply
  7. Nicholas Kokolakis   March 21, 2013 at 10:18 pm

    I am the parent of a narcoleptic . I found your words to be so very true , my son got the disease at 10 years old and takes 3 pills a day . Two to stay awake and one for cataplexy. He is an amazing gymnast , he just won two bronze and finished 4 th overall in six disciplines . He has been doing gymnastics for 3 yrs , he is about to turn 13 . So it goes to show that narcoleptics can function at high levels . I am very proud of him . Thank you for your words.

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  8. Laura Cousins   March 22, 2013 at 11:07 am

    Hello Megan,
    Thanks for the article.
    My dad who is 67 suffers from this disease.
    He drives an hour each day to work and back, which
    makes me nervous.
    Is taking medication Nuvigil I think but doesn’t take it
    much due to the way it makes him feel.
    Any way we can connect to discuss on how I may help him
    more. I live in Asheville, NC and he lives in Delaware. A bit hard for me to help in the way I would like to.
    Thanks for your time.
    Laura Cousins

    Reply
  9. David Rubke   March 23, 2013 at 7:57 am

    Dear Megan,

    You are blessed to have been diagnosed and begun treatment at an early age. I’ve struggled with both narcolepsy and bipolar disorder(a terrible combination) at least from my early teens, but never talked with anyone about it – I thought people would write me off as a nut. I just lived in a terrifying fog until my mid thirties, right at the time when sleep research was just getting started. I began treatment for narcolepsy, sleep apnea, and bipolar all at about the same time, and it really turned my life around. The earlier that sleep disorders can be diagnosed and treatment begun, the better.

    Reply
  10. Holly Twedt   March 30, 2013 at 12:53 am

    Yes I agree as I have narcolepsy and.have encountered misunderstanding AND am a social worker who tries to support patients with sleep disorders. Have finally found medications that work! It has effected my functioning in my job! I am educating myself and my patients! It is do good to see dialogue about this! This empowers us!

    Reply
  11. Claire Metters   April 1, 2013 at 5:45 am

    This was a lovely read. I think it’s important that people feel able to speak out, otherwise the public misconceptions/fear of being ridiculed will continue. I’m based in the UK, where there doesn’t seem to be as much going on in the way of advocacy and awareness raising. I’ve just started a campaign called Let’s Talk via my blog http://crazynarcolepsy.blogspot.co.uk I hope to cover issues that don’t get much attention and feature stories of people aren’t afraid to say that they struggled at times. It’s early days, but fingers crossed it will help someone somewhere at some point. 🙂

    Reply
  12. Kate   April 2, 2013 at 9:06 pm

    I’m fortunate that I’m a SAHM right now and have some flexibility in my needs to push my body and mind steadily throughout the day instead of a regular job, but most days are still a struggle–I can’t take a nap when my 3 year old twins aren’t napping, although I might have a nap schedule if I were at a job.

    I only found out about 8 months ago, after I started a furious search about 15 months ago that doctors had refused repeatedly to help me with. I recall writing my primary doctor a letter 8 years ago, hoping she would take me more seriously than just talking during a check up, telling her that things just weren’t right and I needed her help to get to the bottom of it–and this was when it was already becoming a problem–she, along with multiple other doctors wrote it off as my weight being the problem. [Some with N struggle significantly with weight, far more than the average person.] I also had an incompetent sleep doctor who told me I had “ideopathic hypersomnia”-> you’re tired and we don’t know why, and that was 6 years ago).

    When someone said N, a light bulb went off, it totally describes me. I don’t have cataplexy, so I don’t have that “smoking gun,” but I definitely have excessive daytime sleepiness, overwhelming urges to sleep, HHs and sleep paralysis.

    Thank goodness for online groups I’ve connected with because the people in my life, especially some family, struggle to understand. They completely discount the affect N has on my daily life and my ability to function, playing it off as lazy, especially since it’s not managed well yet (see: incompetent doctor; working on getting a new one). I’m also thrilled to have met Ns (on Facebook) that are incorporating diet changes that are enabling them to reduce or even eliminate medications. Going gluten free, despite a lack of positive blood test, improves my energy so much that it makes it sooo easy to stay gluten free the vast majority of the time because I don’t want to go back to being that tired. Working on reducing and hopefully basically eliminating grains because I did that for 6 weeks last year and felt better than I had felt in years.

    Thank you for adding your story and hopefully reaching even more people with awareness and understanding!

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  13. Laura   April 4, 2013 at 9:18 am

    Thank you for your well written article. Awareness is desperately needed for Narcolepsy and its sufferers. I began to experience EDS literally two weeks after having received a promotion at my job. I was making 45-60 minute drives to the office for training, although this was ultimately to be a working from home position, and I found that I has having trouble keeping awake while driving. I had begun dozing off at random, but it wasn’t until we went up to Vermont to move my son out of his dorm at the end of the school year that it was clear that I needed help. I had managed to remove various items off my son’s bed and removed the bedding and promptly lied down and went to sleep. This was morning and we were just starting the day. After my nap, we got in our cars and began the trip back to Boston. Yes, I slept the entire ride home. With no other symptoms yet present, my PCP’s P.A. Did labs and diagnosed me with mono. My doctor told me that I would be tired for likely many months and I’d better learn to put my feet up and sleep when needed. Okay. About a week later I had my first cataplectic experience, while driving, and became totally frightened. I called my doctor right away and ex

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    • Laura   April 4, 2013 at 9:49 am

      Oops! Explained what had happened. I had no idea what it was and I told him it felt neurological. Again, he told me that all I can do is rest and that this is what mono is. So I said if you’re telling me that being extremely tired and feeling loss of muscle control are symptoms of mono then fine, but I feel I need to see a neurologist. Call me next week and let me know how you’re doing. I called and wow, a referral was in place for me to see a neurologist. The neurologist suspected Narcolepsy right away and explained to me what cataplexy is. A sleep study confirmed her suspicions and I had already begun having hallucinations and sleep paralysis. It wasn’t until several months later when I was first able to see my sleep doctor that I began to fully understand. It was amazing! Everything I had described, he understood! He spoke Narcolepsy! We began the process of trying various medicinal cocktails and as of now I am taking 80mg of amphetamines daily with 200-400mg of provigal to supplement when needed and Effexor twice a day to manage the cataplexy and I still need to nap at least twice daily. Narcolepsy has brought on weight gain which led to a diag of type II diabetes, I’ve had two carpal tunnel release surgeries and one trigger thumb surgery, and now RLS and sleep apnea. I’m trying to lose weight so I can be rid of the diabetes and the sleep apnea. I take 20 pills per day plus two different types of insulin. I have been denied ssa benefits all the way up to the hearing level and upon reading the judges reasoning for denial, learned that he barely touches upon Narcolepsy and moreso on my other conditions, including ischemic heart disease-which I don’t even have and is nowhere in my medical history!! He said I did not appear sleepy and saw no loss of muscle “tone”. I mean no disrespect, but this is the ignorance that we Narcoleptics continue to endure. Having not been able to work for the last three years has been overwhelming. We lost our house and have had extreme financial difficulties, but we are faring better now having moved in with family. My chances are slim but I am appealing the judge’s decision. I know I’ve rambled on and I appreciate anyone who reads this and I wonder about others experiences with trying to receive ssa benefits. It really is a hell on earth experience! Lastly, I am blessed with family who have been extremely supportive and have become well educated on the subject – they are my lifeline – I am always late, my focus and concentration have been compromised, I’ve scared them to death with seizure-like cataplexy and so on. I am endlessly grateful for my family, my true gifts and riches.

      Reply
  14. tam kozman   April 10, 2013 at 4:17 pm

    wow. a VEry powerful and accurate piece! when i do fall down, it is because i also have another common symptom of narcolepsy, ‘cataplexy’. i believe only 60% of pwn’s [people with narcolepsy] experience it. it’s defined as ‘a sudden loss of muscle tone, brought on by sudden strong emotions, most commonly laughter.

    i know one man who broke his back falling down with C. when the trauma from falling first started for me in 2001 [my hare-brained theory is that we all have an ’emotional threshold’. i am a very emotional person, and i was sure i would have had it earlier] but it took my wedding to cause me to start having c; talk about ‘crossing one’s emotional threshold! ;->

    here’s a link to the canine colony at stanford where you can watch the dogs fall down when they see their best friend or their favorite toy. fun, but sad, because cataplexy can lead to pain [please see below]:

    http://psychiatry.stanford.edu/narcolepsy/moviedog.html

    http://www.ncbi.nlm.nih.gov/pubmed/21570344

    i truly loved your article, and will be passing it around to all my friends and family…

    best regards,
    tam

    Reply
  15. tam kozman   April 10, 2013 at 5:31 pm

    http://dsc.discovery.com/tv-shows/other-shows/videos/is-it-possible-narcoleptic-bear.htm

    one more link from dr. mignot’s stanford narcolepsy center. i had believed that when a dog collapsed [like one of those old-fashioned wooden pushbutton toys], it was from a strong GOOD emotion like playing, seeing their favorite food, etc.

    i thought this would be cataplexy, defined as something like ‘a sudden loss of muscle tone triggered by sudden strong emotion, most commonly laughter or strong feelings of amusement’.

    the tragic part, i think, is that many people still go undiagnosed correctly for up to 14 years. i have heard that c can be as subtle as a slight sagging of the jaw, head, and/or neck so that one doesn’t even know it’s happening. people will train themselves not to feel strong emotions

    cataplexy has caused me to fall most recently smashing my nose and scarring my lip time after time over the last year. in the past, i have broken my leg, my ankle, my eye socket, etc. so i have pretty much trained myself to fall on my behind… ;-> narcolepsy really is ‘a funny disease that’s no laughing matter’, per marguerite utley’s book.

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  16. tam kozman   April 10, 2013 at 5:35 pm

    i also thought that the dog acting out his dreams is exhibiting classic ‘rem sleep behavior disorder’, where a person acts out her dreams!

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  17. Liz   May 17, 2013 at 5:06 pm

    Thank you for your story, and for all the positive responses. My daughter was recently diagnosed, and is having a very difficult time finding the right medications and adjusting. We need to hear every positive story out there.

    Reply
  18. Andrea   August 24, 2013 at 7:20 pm

    I’ve had narcolepsy all my life but the past ten years have been the worst. I just can’t control it anymore and I can’t tell you the amount of embarassing gynaecology examinations and attempted treatment I’ve had to restore my libido. That is the worst thing for me, it makes me feel so guilty like I’m purposely withholding sex from my partner, causes a lot of problems which in turn affects my narcolepsy. Sometimes I think I will never feel excited or overwhelmed again in my life as it sets off the damn cataplexy. I’m 44 now and it’s so difficult to live with, some days I wake up and I feel so exhausted that I wonder if ill just drop dead literally from sheer lack of energy. I’ve been getting very depressed lately. X

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  19. penny meads   January 21, 2014 at 2:44 am

    I am soon to be 69 years old, And i have the three, Narcolepsy, Cataplexy, and hypnogogic whatcha macallits ! when I was first diagnosed at the age of 23 , the only info on these conditions was a couple of lines at the bottom of a medical text book, and in those lines it stated that Narcolepsy,C & H where bought on by a great fear,.I was tested in London, and then came to Australia, where I was put in the hands of a Professor of Neurology at a teaching hospital. At that time there where only 2 of us in NSW diagnosed with this, so I was teaching them about this condition. But coming back to the original cause that I heard, I had in fact at the age of 13 had an enormous event filled with great fear in my life. And the whole of my 13th year was filled with fear, until I was 14 when I suffered my first sleep paralysis. and from then on Narcolepsy, C & H got progressively worse. there is a lot more story, and a lot is very similar to everyone else, but my point is I wonder if anyone did experience a great fear early in their life, (it was also in my family, my grandmother and my mothers sister seemed to have narcolepsy) Now i just maintain it with medication and nanna naps.

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  20. Reggie   March 21, 2014 at 2:40 am

    I was diagnosed with narcolepsy in august of 2013. My wife thought I had sleep apnea. As I do have apneas, it wasen’t enough for me to qualify for sleep apnea. During that night I got about 12 hrs of good sleep. The Dr. Said that went into REM sleep about 27% more the a normal person. So the following day I had to stay to do the Nap test. During the 20 min naps I would fall asleep between 4-8 min. The dr prescribed me adderal. It helps a lot. On the weekends I have what’s called a crash day where I don’t take the meds and and I just crash out all day. It actually pretty nice and it helps so that my body doesent build a tolerance to the drug. Sometimes I can go without the drug if I am able to wake up without an alarm, but most of the time the worst part is the waking up. Sleep for 10 hrs and you feel like you have a hangover with a sack of bricks tied to your head. My wife doesent understand because I can sometimes do without the meds and function pretty good. Most of the time though, it’s hard to function. The scary thing is when I’m hanging out with my children and I get that uncontrollable desire to crash, and then all of a sudden you realize that you did crash while your kids were under your supervision. I also struggle with depression, ADHD, and BI polar disorder. Although, my Psyciatrist need to better evaluate me for the bi polar. Does anyone else feel similar to this?

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    • John   August 6, 2014 at 7:26 pm

      You definitely need to have everything re-evaluated, since narcolepsy was not taken into consideration when diagnosing everything else. Constant fatigue looks like depression, and antidepressants can make it worse which can cause a cycle of changing and overlapping medications that can have side effect that are unpredictable and can masquerade as any number of things. You need a doctor that will step back and look at things with fresh eyes.

      For understanding people try the Narcolepsy Support Group on Facebook

      Reply
  21. MsCaseyGirl   June 23, 2014 at 12:30 am

    Thank you for sharing your story. I was diagnosed almost 2 years ago at 16 years old. I have never felt fully rested and my mom could tell I wasn’t sleeping well as a baby. I did a sleep study at 5 years old but it was just one for the more popular sleep issues (restless leg, apnea). I finally took another one and they referred me to a neurologist. I was falling into sleep under a minute and into rem in less than a minute as well. I just feel extremly tired and I have bad nightmares. I’m worried having this diagnosis will effect my dream of doing law enforcement. My parents think I’m not as tired as I say I am. They think I use my disorder as a crutch. No one understands how exhuasted I feel and the fact they push me to take all these classes makes me want to cry because I know I won’t be able to do it all especially with this new part time job. It takes so much out of me. I take Nuvigil now since I’m under 18 and hopefully start something new soon. I don’t know what to do to make my parents understand how deathly tired I am and how I can only take on but so much stress.

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  22. Norma   July 25, 2014 at 5:16 pm

    I am 56 and was diagnosed in January. I worked at a day care and I was reading the children a book and they kept telling me to turn page. I had fallen asleep and argued with the other staff when they tried to wake me up and take book.
    I was sent home went to doctor got off all medication and doctor gave me an ok to go back 2 weeks later same thing sent home again. Went to sleep specialist and he said I didn’t have sleeping problem sent me to neurologist First trip I had restless leg syndrome and scheduled test. He made the sleep doctor do the sleep study on me and he wanted the daytime but no he wouldn’t give. Now I have sleep apnea and get a breathing machine. Brain scans turned out good, go back to would 2 weeks again I didn’t see it but the other teachers and the cameras caught it. I call it the zombie mode where you just go thing with out remembering them.
    Which I have a lot of, plus I fall and trip constantly. Now my knees are buckling on me and it fells like a knife and then it hurts to walk.I got on Ritalin in Feb that was rough. At least it keeps me awake. Had to go through 3 different kind to find the one to keep me awake but doesn’t keep and of other problems. I take 60mg a day and I am so tired. My husband just keeps saying the doesn’t exist I’m just lazy even though he has been in with the doctors and heard what they have said. I am no longer useful to him because I can’t work. I kept telling him last summer there was something wrong with me and he keep calling me a drug addict even though I no longer took anything. I wish all of you the best,

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  23. John   August 6, 2014 at 6:54 pm

    Great article. One thing that even people WITH a basic understanding of narcolepsy never seem to understand is that most of us suffered for years and often decades before being diagnosed. It never even occurred to any doctor that I had been to in over 30 years that I might have a sleep disorder. As long as I did not snore and did not get too little sleep (yeah right, I wish) then there was nothing wrong. The only person that I can thank for my diagnosis is a psychiatrist that actually listened when I said, for the millionth time to various doctors, “I am not tired all the time because I am depressed, I am depressed because I am tired all the time!”. Ironically, I went there at the urging of my GP because she insisted that my constant fatigue was psychological.

    Anyways, even to this day my family talks about how unmotivated and lazy I was in school, an issue that caused severe problems at the time and for years to come, ignoring the fact that I have told them countless times that it was actually an undiagnosed neurological disorder. How can I expect society in general to understand if my own family cannot grasp the concept?

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  24. maxine   August 23, 2014 at 7:07 am

    hi my 6 year old son for the past 2 years has been falling asleep during the day nearly everyday sometimes he will be talking eating or playing when he just fades asleep he also has a bad bienge eating problem and has alot of nosebleeds he went on holiday and fell asleep on a boat in the water with all the other kids playing round him any help would be great iv never heard of narcolepsy befour but he seams to have alot of the symptons

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  25. I hate sleep   August 24, 2014 at 4:11 am

    So close to my symptoms. I can’t believe there are so many of us living this life. Sometimes I think no one will understand, then I read this. Thank you.

    I just wanted to ask if anyone else has tried xyrem? I started almost a year ago. I hate it, feel crazy at night, but I wake up more myself than I have in years. Just the fact that I wake up at all, is amazing, let alone feeling some what normal in the morning. It has been my miracle.

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  26. ZZZs in ATX   September 24, 2014 at 4:03 pm

    I was diagnosed with Narcolepsy in 2010 from a MLST. I have been on Nuvigil since February. I can say it’s not as effective as it used to be when I first started. I am napping 2-3 times a day now and still groggy most of the time despite 3-4 cups of black coffee. I get so angry because I have no energy to live life like I want to. I just barely exist from one nap to the next. Going to the sleep doctor again tomorrow to see if he can put me on a stimulant as well as the Nuvigil. I am on a CPAP as well, I can’t say that it is helping much either. I am just so exhausted day to day. This is a miserable way to exist.

    Reply
  27. Tired of Sleep   October 14, 2014 at 2:38 am

    So many with stories I have found so similar to mine and too each other’s, I too have had all the tests and no doctor will give a definitive answer, I woke up driving in the median of the high way a while back, cpap machine seems to make no difference at all and now my job is on the line. My boss says he has seen me fall asleep and sleeping several times, he did NOT say why he overlooked it, he could have fired me on the spot so I do give him some good boss credit for that, he has woken me up once and told me I was sleeping, I said really? I honestly had no idea and I have told him I am having tests and doing everything I can to figure it out but now he just say’s too bad, it doesn’t matter why or if it’s a medical condition or not, whether I can help it or not, if it’s fixable or not. Just not sure what to do now, I never know when it will hit me. Thanks for “listening” I hope everyone finds a solution to their problems that I haven’t yet.

    Reply
  28. Finally diagnosed   November 24, 2014 at 7:39 pm

    It was great to read all of these entries. I have suffered from my narcolepsy for 12 years now, with the possibility of longer, but I can’t remember that far back. I had 2 sleep studies prior to my most recent one. In these previous 2, I fell asleep in literally 0.0 min, and entered into REM. In my most recent sleep study, I had a great night sleep, nearly perfect. But then my naps I fell asleep in 7 mins on the first one, 2.5 min on the second and third one, and 3.5 min on the fourth one with an average sleep latency if 3.9 min. The first nap and third nap I went into REM, and was even able to remember that I had dreamed. Over the years, my symptoms would get worse, or I would find that I had new symptoms. My memory being the worse. I have 3 sons, and I feel like the worse mother, b/c I don’t have the energy to get up and play with them or show them the attention I wish I could. And then I find myself falling asleep, even after taking my nuvigil. But these sleep attacks often times come with no warning other than my friend telling me my eyes become glassy and I get extremely quiet and withdrawn. I have been told for about 12 years now that I’m depressed, and a year ago I was disgnosed with OCD, and I have been on so many different antidepressants. I would tell the doctor that I was not depressed. Yes, I had moments that I would feel down, but I was able to come out of them. And I felt fine. However, I was extremely moody when I was sleepy. And I would be so moody that my don’t who was 5 at the time would tell me to go back to sleep b/c I was grumpy. This all leads to my husband and I having problems within or marriage. Which then led me to reluctantly see another dr which was the sleep dr that he sees for his sleep apnea. When I went to see him, I started having problems with what I thought was insomnia. However, this so called insomnia is just my perception of my sleep disturbances. I read the other day, that someone suffering with narcolepsy is the equivalent of he normal person going 40 hours without sleep. I have had ppl tell me they get tired too. And that I have 3 kids, and a full time taxing job as a nurse, so what do I expect. But what they don’t understand, is that this sleepiness is not that same as the normal feeling tired or being worn out. It’s very hard to deal with and explain. I often times wonder if I could die (excluding a car wreck) from pure exhaustion.
    Additionally, science is making strides every day. And they may have a pill to block that cell that we as narcoleptics do not make. So maybe one day, they will make a pill that will reapply that cell. Best of luck.

    Reply
  29. Caterina   November 30, 2014 at 10:45 am

    My daughter is 26 and has narcolepsy. It appears that she now has developed multiple chemical sensitivities as well. We have learned that when the body is deprived of sleep for years it adversely affects the immune system, thus leaving the body open to a host of other health problems.

    I would like to hear from anyone with narcolepsy who has developed multiple chemical sensitivities.

    Xyrem allowed for clear thoughts but caused a host of horrible problems by messing up the hormones, etc.. My daughter no longer uses any type of medications, manages as best as she can with dietary choices. Specifically the elimination of wheat, any type of gluten, dairy, corn and tapioca starch, and refined sugar.

    I’m looking for information from others to further educate myself on narcolepsy and how to best live with it.
    Is there a support group/agency out there that shares information about living with sleep disorders, how to go forward with education, possible job programs/sites to look for a job that requires intellect but has flexible hours.
    To look at my daughter one would see a lovely, and intelligent young woman. Most people, including family, have no idea what she goes through on a daily basis. The best way to sum it up is by sharing something my daughter said, “It’s like a bad dream that never ends. Each day is like starting all over again, I’m not able to retain much information or have the energy to go forward”.

    I am encouraged by all of the individuals on this site who have had the courage to post information, thoughts, encouragements and discouragements, suffering, trials, etc. of what is going on in your life – living with narcolepsy/sleep disorders.

    We hope to hear in the near future, of a treatment/pill/gene switch turn off, etc. that would make it all manageable.

    Thank you
    C

    Reply
    • Victoria Hall   March 31, 2015 at 10:58 am

      I am 41 years old. Have been recently diagnosed with Narcolepsy although I have had symptoms since I was in junior high. Unfortunately, I also have a mitral valve prolapse which acts up with most of the medications used. So, I am left with managing symptoms naturally. I exercise daily, have been gluten free, sugar free, pescetarian for years…which didn’t help..but have recently stopped eating starch and legumes…just to see if i can manage to stay awake a full day. I am happy to report that so far it is working… I am not a nutritionist…so I was wondering how your daughter and anyone else who has tried..is doing with a similar diet.

      Thanks,
      VH

      Reply
  30. Nacoleptic Public Worker   December 3, 2014 at 1:26 am

    I could have written the article also.

    Right now, I am fighting for my job (which I love) with a public employer, in spite of the fact that I out preform 95% of my co-workers. They just can’t handle that I am not punctual, miss a day or so a month but don’t come back with the flu or a broken leg and do not collapse into sleep-coma on occasion. They have taken to an elaborate system of monitoring my comings and goings (through the security system)and seem shocked that the medications I must take (drug addict?). I have thought about disability but how does one even go there when you out preform 95% of your co-workers, besides I like working. You would think the government would be a little more sympathetic since Narcolepsy is an ADA covered condition. Not so, as I have heard the most ignorant statement made by their representatives that it makes me think I am living in the 16th Century.

    But I will keep the fight up, not just for me but for all of you as I know what a struggle this is.

    Keep up the fight,

    Reply
    • Pam   July 11, 2015 at 5:33 am

      I have had the same problem with some jobs and with the medication I take. If you can, maybe you can provide your employers with a pamphlet or information about N. (if you haven’t already). Use the ADA to your advantage if necessary and good luck. I also thought about disability some time ago and was told that because I perform so well when present at my job I do not qualify, which I really did not want to anyway. My present problem is that I have three part time jobs and none of them have affordable insurance even if I went full time at any of them. I actually have to watch how many hours I work because if I make too much I will lose medical aid and if I lose medical aid I would not be able to afford my medication, without the medication I can not work. I hate the cycle. I am ok with the aid right now, as my husband left me last year and I went back to school online to finish my degree. I am ok with it, because I am going to school to better myself and to be able to get a good paying job with affordable benefits so that I will be able to support my son (and step daughters part time). People do not understand how expensive the medication is and even with insurance it would cost me a few hundred in co-pays. (it is $2772 a month for just one of my prescriptions without insurance).. it is ridiculous.

      Reply
  31. Denise   December 7, 2014 at 1:21 am

    Here’s a description of the exhaustion we feel that people without narcolepsy can relate to. Think of having the worst flu you ever had on top of jetlag…this approaches how I feel without the stimulant I take.

    Reply
  32. Charles   February 23, 2015 at 8:42 pm

    Just turned 45 and was diagnosed in 2008 with N., S.A. & rls. On provigil for day time and seroquil for nights. I’ve come off the meds several times because of intestinal symptoms that make me fear that my liver is being affected somehow. Without the meds, my guts work great, but my behavior plummets. With them I can control my behavior, but I constantly feel sick. I used to be able to exercise, now the lack of it makes me feel much worse. I’m in the middle of applying for ssi, but am afraid I won’t get it. Unlike some who’ve commented here, when I’m about to have an episode, although it comes on slow, I’m not always aware of it which makes it dangerous for me in some situations. By carefully preparing before and limiting my driving, I can drive safely – plus I’ve trained my two teens to do what my wife does which is to monitor my symptoms while driving so I can switch w my wife or pull over if it’s one of the kids. Otherwise, I’ve become total non-functional. I struggled to finish my degree (going to a night school helped since I also suffer massive insomnia [I’ve been able to stay awake on ambien!] and mania) and have since not been able to complete any tasks that could be used for employment. Keep in mind that I was already employed when I started the program for my B.S and that the degree was supposed to help make me more fiscally viable. Well, I lost that job and my concentration has since dwindled down to almost nothing. My wife has to hold on to my ATM card because I will get an ‘idea’ while shopping and blow our budget. She has had to go to nursing school to support us, which is great, but her first hospital job is putting her through the requisite night shift and she suffers greatly for it (we’ve done our research and the bottom line is, no matter how much alteration and preparation you do, some people just can’t handle nights). Even that’s not too bad as it must be temporary – a year or two will suck but will end. Whats bad is that I was never the SAHD type and my meds/condition make it impossible. In order to get my wife trained as a nurse, we had to go on assistance (the company that let me go allowed me to keep my insurance for a year). California has gone through some crazy budget issues and one solution they thought would save money was to cancel dental for adults. This happened about 2010. Five years later they added dental again – but only for certain things. Now the teeth that fell apart without care over the last 5 years are only eligible for removal. Loss of teeth leads to much poorer diet leads to interconnected, compounded health issues, leads to …? I am legitimately scared for my life. People who know me have this trust relationship with me based on testimony from other friends who have witnessed me having a N. and/or cat. episode. They know I’m sick, and they politely make mental accommodations for the possibility of witnessing an episode because they trust I’m not making this up. But whenever I have one in front of a friend or acquaintance who has never seen it happen before, the reaction is always one of astonishment. People see me lose control in that vulnerable manner and they get scared for me. It’s not enough to say that narcolepsy steals your life away. It took me over 3 hours to read and respond to your post. Many more people have it than are correctly diagnosed. I’m not usually someone who cries, “The government should do something.” but if society can’t absorb this properly, we will need serious help to be acknowledged and treated fairly. Thanks for your article and the chance to share my story.

    Reply
  33. Julz Olah   March 11, 2015 at 11:35 pm

    Thank you, Thank you, Thank you. I wish that people knew more back in the sixties and up, about narcolepsy.I grew up with halucenations and lost time, as early as seven years old. I remember snapping awake to hear a teacher yelling at me for scribbling on a test.I was constantly getting in trouble for daydreaming,called lazy and generally rejected, all through school, for being the weird kid.I didn’t choose this and those dreams were never pleasant.It made me a target for preditors, as I walked, most everywhere that I went. It was always hard to keep my focus, in school or in conversations, not because I wasn’t interested, but because I was always fighting to stay awake. I was just diagnosed this year, after several bouts of hytened vagal tone and bradycardia. This was possibly the result of or connected to my narcolepsy. I have been through many tests and because of it’s portrayal on T.V., never thought that I had narcolepsy. I’ve never fell asleep while standing up or fell to the floor when I had sudden muscle cramps or weakness. I have had episodes of cataplexy and am just trying to understand what I’m dealing with.I hate that this exists, but I’m thankful that people, like you, are brave and open enough to be honest about it.

    Reply
  34. Aimee Snapp   March 22, 2016 at 2:46 am

    I feel like I wrote this. Thank you for such an accurate description of this debilitating illness. I needlessly lost my education because of it. I read about it in a magazine was I was 14 and knew I had it but wasn’t diagnosed until my early 20’s. Nearly 10 years I suffered back when no one who would listen. Worst timing ever.

    Reply

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