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I Have Narcolepsy

Personal Stories, Advice, and Support 472 People

    I have narcolepsy an cataplexy following the

    swine flu injection which was given in Europe in 2009, its extremely difficult and an ongoing battle everyday. One injection changed my entire life.
    staystrong27276 staystrong27276 22-25, F 5 Responses Jun 14, 2014

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    Narcolepsy - Just By Accident

    from an active live to the back seat I had never heard of Narcolepsy, and was just enjoying my life and my work in all kind of places all over the world and have been doing this for the best part of my working life. But since life has no menu and not all goes as you like...
    trailblazerxx trailblazerxx 66-70 3 Responses Sep 18, 2010

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    Hi everyone. I'm not sure

    if what I'm experiencing is narcolepsy of what it is. I've been really tired all the time lately. Like for almost 2 months constantly. I get enough sleep at night but in classes I sometimes feel that I just have to sleep. I usually just ask someone if I can borrow their book...
    Lemons2000 Lemons2000 18-21, F 1 Response Mar 24

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    Narcolepsy Has Ruined My Life

    I am new to this im 15 and i started getting symptoms of narcolepsy when i was 12. My first first symptom was cataplexy and i got used to it but then i started falling asleep all the time sometimes when i was walking. My behaviour changed and i was getting angry with myself and...
    melissa1995 melissa1995 13-15, F 4 Responses Dec 20, 2010

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    I was diagnosed with narcolepsy

    and cataplexy today, I'm 18 years of age and believed I was abnormal for around 3 years, for the past 22 months my symptoms got progressively worse, the amount of time I'd sleep daily would differ sometimes 20 hours a day, this got me to a point in which I felt so low I had no...
    lcjayemoore lcjayemoore 18-21, F 1 Response Nov 3, 2014

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    Narcolepsy, Leukemia,

    and liver disease! I'm such a mess and maybe someone can relate. Hi, well I'm new on here and still learning how all this works. But I was diagnosed with Narcolepsy when I was like 16 yrs old but I didn't like the Provigil they gave me because it made me jittery and my...
    Lena27 Lena27 26-30, F 1 Response Dec 12, 2013

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    what should I do?? I am feeling lost,

    and there is no way out. Take this to be productive, take this to sleep. . . I cannot go on living my life based on whether or not I have ambien or adderall
    lrbaker lrbaker 22-25, F 4 Responses Dec 15, 2014

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    Narcolepsy affects every aspect of my life.

    The feeling of sleepiness invades everything I do. Having to fight the intrusion of sleep becomes top priority and is socially devastating. It strains my relationships when I try to make plans with my friends, and more often than not I can’t keep those plans. More...
    Tigris106 Tigris106 36-40, F May 5, 2014

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    im new to this site but I was diagnosed with

    narcolepsy without cateplexy about a week ago. ive alqays had the symptoms but they have gotten worse over time. I started provigil today and it seems to be keeping me up all night. has this happened or does this happen to anyone else.
    seclark8 seclark8 22-25, F 3 Responses Nov 19, 2014

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    Today is one of those days

    where I can't keep my eyes open. I run a machine at work any suggestions on how to wake up. I take provigil twice a day and have tried caffeine already.
    Goofy18 Goofy18 36-40, F Jan 20

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    suffering today now im home tablets dont always

    work as well when im in house
    iminyourthoughts iminyourthoughts 41-45, M 2 Responses Jun 2

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    I was diagnosed with narcolepsy recently.

    .. I have seen it on tv and I always thought to myself how hard it must be to have something like that until I was diagnosed and then I realized how hard it was... And honestly it sucks but I am coming to terms with it except for the medications I have been prescribed which...
    hardnreadyforyou hardnreadyforyou 41-45, M Sep 23, 2014

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    What's The Point?

    I've been a member of this website for a while. I've kind of kept an incognito membership because I'm not one to just start talking about my experiences. I'd rather stay behind the shadows and read about everyone else's and make the occasional comment when I see necessary, but I...
    ikkinay ikkinay 18-21, F 5 Responses Sep 4, 2011

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    Drivers License Confusion

    I am very frusterated. I live in Kentucky and in this state there is no requirements for the doctor to notify the DMV about PWN. My husband just got offered a job in MS and I don't want to move there if it means that I will lose my license. I have called the DMV and a couple...
    sleepymommy sleepymommy 31-35, F 3 Responses Sep 28, 2010

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    About 3 months ago I started to get these

    dizzy/sleepy spells that I couldn't fight off. I didn't know what was going on but it was bad enough that I missed (and eventually failed half of) my classes. I could not stay awake for the life of me. At first I thought it was my fault. I would take food to class to stay awake...
    Kayleeruth1 Kayleeruth1 18-21, F 2 Responses May 26

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    Narcolepsy For 30 Tears

    I have narcolepsy, I was diagnosed when I was 20.  It has been so hard for people to understand it, even some of my family.  My oldest sister just died in a car accident, because she wouldn't take her narc meds. I really miss her. Narcolepsy runs in my family, I have 6...
    denicew denicew 51-55 10 Responses Jan 16, 2008

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    I was just diagnosed.

    I have my lovely partner for life. I have a toddler. I have a home. A cat. A dog. A job. Needless to say I feel tired 24/7.
    blancod blancod 22-25, F Jan 9, 2014

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    Hey guys & gals, I have to say this is an odd

    thing to be, which is I guess to say that we don't have something, as this is how we are. It's a tough nut to crack, I'm 24 and was diagnosed at 18. My dreams unlike a lot of your's are amazing, but waking up feels more like it'll kill me then help me in the morning. I've only...
    enlightenedjack enlightenedjack 22-25, M 1 Response Aug 23

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    I Want A "how's My Narcolepsy?" Bumper Sticker

    Here's a useful tip: Narcolepsy is NOT just for old people. I don't know how that stereotype got into my brain, but for that reason I did not suspect that I had narcolepsy even though there were obvious signs, and it turned into years of unnecessary hassle. The onset for me was...
    Hope4theHopeless Hope4theHopeless 18-21 Mar 23, 2012

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    I'm Not Lazy!

    After years of being diagnossed with depression and having tons of blood work done... I finally went in for a sleep study. Although the idea of narcolepsy is quite scary, I felt releaved that it wasn't just my personality. Everyone thought i was lazy and anti-scocial in college...
    atlnarco atlnarco 26-30 23 Responses Sep 10, 2008

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    I was diagnosed almost 2 years ago

    and it's almost taking my entire life away. I have always had daytime sleepiness but what triggered mine was a jealous girl cracked me over the head with a beer bottle. I knew something was going on cause I started sleeping real heavy all the time.. And I mean heavy. I keep...
    Ruinedbynarc Ruinedbynarc 26-30, F 1 Response Mar 17, 2014

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    I was diagnosed with narcolepsy in 2009.

    . I Had no idea that I had it due to my symptoms were only cataplexy and sleep paralysis at the time... I thought I was having siezures? Since then it's progressed and is much worse! I had to go untreated for a few years due to I lost my ins when I was divorced....And had to...
    dawns38 dawns38 36-40, F 1 Response Feb 15, 2014

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    Sleepy Girl Too

    I have narcolepsy-no cataplexy but all the other fun things that go with it.Like putting your keys in the fridge,falling asleep at a rock concert,running in the other room because i'm sure someone was yelling for me and no one's home,etc.I have a question-anyone else struggle...
    brokenrose brokenrose 31-35, F 3 Responses Oct 6, 2008

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    The Story of My Sleeping Disorder

    well first im glad i found this site and this group cz honestly i needed to share my story with people who can relate to me and have the same problem as mine. im 17 years old, i first got sick 2 years ago and i started having sezures and falling down in so many places and at a...
    lostdream lostdream 16-17, F 9 Responses Dec 9, 2008

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    I have just been diagnosed with narcolepsy

    but I don't think people can truly understand it. I always get responses such as: "your only tired when you want to be." Or: "You don't act narcoleptic." And: "True narcoleptics fall asleep in seconds." I've never just suddenly passed out i've just been experience chronic...
    Kelsey098 Kelsey098 18-21, F 4 Responses Sep 10, 2014

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    Tired Of Being So Tired

    Hi! I was diagnosed with narcolepsy 2yrs ago. It started out I was really fatigued during the day, but as time went on before I found out what was wrong with me I got to the point where I couldn't even sit in my office at work and count money without falling asleep. So I went to...
    Punkin3239 Punkin3239 36-40, F 1 Response Oct 18, 2013

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    Tired Of Being Too Tired

    I was diagnosed with a sever case of narcolepsy and cataplexy at age 9. I have been on meds most of my life. I have 3 children, the youngest is only 4 months old. I am so frustrated and sad that I can't just be normal. My 52 year old mother in law has 5 times the energy I do. My...
    kgettel kgettel 26-30, F 2 Responses Oct 10, 2013

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    A Poem Titled - Spend A Day In My Shoes..... Written By Bc For Bc Circa 2011

     SPEND A DAY IN MY SHOES.................Spend a day in my shoes,Go ahead try it you've nothing to lose.First avoid laughing at all cost,... Unless you can deal with the muscle loss.You could be in a crowd or watching TV,Thats when you'll excperience Cataplexy.You fall to...
    beverleycuerden beverleycuerden 41-45 3 Responses Oct 22, 2011

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    The heaviness in my eyes,

    fighting to keep them open is torturous.
    Goofy18 Goofy18 36-40, F 1 Response Jan 27

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    Finally Found Out

    I knew since I was about 15 that something was wrong. Horrible daytime sleepiness, no energy, poor sleep, achiness and it was every day. I'm 48 and was diagnosed 1 1/2 years ago after many doctors blew off my symptoms including cataplexy (bad enough that I;ve falledn off the...
    wakeuplilsuzi wakeuplilsuzi 46-50, F 6 Responses Feb 16, 2008

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    All I Can Do Is Deal With It

    I was diagnose in 2009 I remember majority of my life I've been battle sleep at which I never won then found out there is know winning to it. But living with this sleep disease its been hard its been there has been a lot of times I have thought about giving up from being out of...
    Mclovin316 Mclovin316 31-35, M 1 Response Dec 1, 2013

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    So I've been on Nuvigil

    for the past week... 1st day was great, 2nd and 3rd day headaches, I was having sleep attacks by day 4.....been struggling all week... I'm just a mess now depressed etc... Called and left a message for the dr today to let him know that I'm stopping the meds... I just want to...
    dawns38 dawns38 36-40, F 3 Responses Mar 14, 2014

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    It sucks plain and simple.

    All the people in my life describe me as lazy. I have no energy and all in all it makes me depressed that I am so energy-less all day long. I sleep and sleep and feel the same. I esp. hate micro-sleep because I am basically a walking dead zombie and cant remember what I was...
    deleted deleted 26-30 Feb 24, 2014

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    Has anyone been clinically diagnosed with N?

    What I mean by that is without being diagnosed through the sleep study or the sleep study not showing full N but still having every symptom?
    Kelsey098 Kelsey098 18-21, F 1 Response Nov 3, 2014

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    I Finally Found Out What Was Wrong, I Have Narcolepsy

     I'm 19 and I've been messed up since I can remember, but as time went on it got worst.  I have headaches everyday since I was 10, my mom tried to get me to go to doctors but I wouldn't listen.  Then Finally I had enough.  But the doctors didn't listen or didn...
    Scienceofsleep Scienceofsleep 18-21, F 8 Responses Dec 3, 2008

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    Who Knew

    I was diagnosed with Narcolepsy this past April. I originally when to the Neurologist because I was having headaches and migraines daily along with a weird "paralysis" after waking from dreams. It was so bad that I would stay up at night because I didn't want to fall asleep and...
    radtech8 radtech8 26-30 1 Response Oct 2, 2010

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    VERY Important to All Narcolepsy_cataplexy Patients

    Helloo everybody ...God knows !! im so Glad i found this web site , finally i dont feel Alone in this ..well we all as people suffering from narcolepsy or/and cataplexy having the same symptoms , though it differs a bit from one person to another , but in general the main...
    sugerbabe87 sugerbabe87 22-25, F 5 Responses Sep 13, 2009

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    In Class

    Today in class I was taking some notes when I fell asleep. I know because when I woke up my forehead felt quite sore, and the class had stopped, having everyone staring at me... so it must have been a loud noise that made everyone notice. "Do you have anything to explain us...
    sweetmeisje sweetmeisje 26-30, F 16 Responses Sep 14, 2010

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    I'm A Narc.

    I have been in and out of the doctor since I was 7. They scanned my brain they checked my insides. They diagnosed me with depression at 14. Now finally at age 19 I have answers. I had a sleep study and found out I'm narcoleptic. IM NOT LAZY! I have a real problem! I just want to...
    Meghan23 Meghan23 18-21, F 2 Responses Dec 19, 2012

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    I had narcolepsy in the summer

    if 2011 and now im 13. It is young to have narcolepsy at my age and is very rare for people around my age to have it at all. Im on fluoxetine for my cataplexy and on midafinel for my narcolepsy x
    cerysmorris1221 cerysmorris1221 18-21, F 3 Responses Mar 8

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    Narcolepsy Is a Lonely Journey

    I first had my sleep paralysis when I was 12 years old and then the sleepiness & sleep paralysis got sooooo bad in my teen years.  I couldn't figure out what was wrong with me, I just thought I was either demon possessed or super lazy.   I went to several...
    ihave4dimples ihave4dimples 26-30 11 Responses Aug 18, 2008

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    ADHD Vs, Narcolepsy

    It is hard to get started because I don't really know where to begin... When I was younger my mom told me how she used to find me all of the house sleeping. I would be playing with my "My Little Pony's" downstairs, and she would walk down stairs to check one me and...
    lala216 lala216 22-25, F 20 Responses Nov 6, 2008

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    I have lived my whole adult life battling

    overwhelming daytime sleepiness and nighttime sleeplessness and for years doctors told me I was just depressed, until I feel asleep at the wheel while driving. Luckily I lost muscle tone so my foot relaxed off the accelerator and the car rolled to a gentle stop, but I could...
    EmperorJulian EmperorJulian 46-50, M 2 Responses Oct 29, 2014

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    I Want To Talk/Chat To People Like Me. PLZ Answer Me :)

    Hi everyone, So I was looking for a chat forum to talk to people with N. I couldn’t find one? Do you know any? Maybe some of you out there, would like to chat or skype? Let me know. I just feel like nobody really understands what's it like to live with this every day. I kinda...
    sleepynana sleepynana 31-35, F 5 Responses Jun 18, 2013

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    Narcoleptic Teen

    Well i'm 16 and a Junior in high school. I got diagnosed when i was 14 or when i just turned 15. I've tried many different meds, all of them made me sick so i just don't take anything. My worst part of the narcolepsy is the sleeping ALL THE TIME!!! My ex boyfriend actually used...
    xoxomountaineerxoxo xoxomountaineerxoxo 16-17, F 9 Responses Feb 15, 2011

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    New Narcoleptic

    Hi.   So I was just recently diagnosed with narcolepsy, and what was once a joke, is now the most serious thing in my life.  No longer are my strange quirks funny like how my left leg looses all control if I laugh or am the least bit excited.  No longer are...
    skippyrah skippyrah 16-17, F 5 Responses Jun 6, 2008