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I Have Narcolepsy

Personal Stories, Advice, and Support 453 People

    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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    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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    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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    New And Wondering

    HI all. I have Narcolepsy plus cataplexy just found out this week. Now what i wanna know is if there are any education groups out there other then places like this. I am struggling with the fact that on too large of a scale we are misguided by media and lack of general...
    joshx joshx 36-40, T Aug 30, 2013

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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 41-45, F 6 Responses Feb 16, 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 18-21, F 20 Responses Nov 6, 2008

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    Um......

    I'm too tired to tell my story. well maybe that tells it perfectly...
    TheWrongAlice TheWrongAlice 31-35 2 Responses Aug 30, 2013

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    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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    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 13-15, F 5 Responses Jun 6, 2008

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    A Little Of My Story

    Hey all. I am new and just wanted to introduce myself and share a little of my story. I am 39 and have been struggling with unusual sleep all my life. I started as a sleep walker at a very young age, reoccurring night mares and such. Which eventually subsided. In my very early 20...
    joshx joshx 36-40, T 2 Responses Aug 30, 2013

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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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    Well, Technically...

    I have still-being-discovered "endozepine induced hypersomnia" but there are only a handful of us in the trial. Basically, we look like narcoleptics and often get misdiagnosed as such, but it is because of some protein in our cerebrospinal fluid and too much endozepine. Usually...
    LoreleiElise LoreleiElise 26-30, F Aug 29, 2013

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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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    Undiagnosed

    I believe 100% that I have narcolepsy just havent been diagnosed. I am constantly tired with any amount of sleep I get! I may sleep for 10 hours wake up feeling like ive gotten no sleep at all. I literally take about 3 naps a day and still manage to fall asleep driving or talking...
    Brittbrat223 Brittbrat223 18-21, F 1 Response Sep 27, 2013

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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 26-30, F 3 Responses Sep 28, 2010

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    My Story And Struggles Of Living Life With Narcolepsy

    I am a 41 year old female. I was diagnosed with Narcolepsy when I was 10 years old by a wonderful doctor at the Southwestern Medical Center in Dallas, Tx. I exhibited all the symptoms as a child... tiredness, sleeping excessively, nodding off, vivid dreams... etc. I was teased...
    Sprnurse71 Sprnurse71 41-45, F 6 Responses Jul 6, 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 22-25 23 Responses Sep 10, 2008

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    Is anyone on disability

    for narcolepsy
    Goofy18 Goofy18 36-40, F 2 Responses Jan 20

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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 26-30, F 3 Responses Oct 6, 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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    For more information on narcolepsy,

    please visit www.wakeupnarcolepsy.org and sign up for our blog to receive timely information, news on local events and more!
    KathiWagner KathiWagner 46-50, F 1 Response May 15, 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 16-17, F 8 Responses Dec 3, 2008

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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 46-50 10 Responses Jan 16, 2008

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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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    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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    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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    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 22-25 Feb 24, 2014

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    I Never Thought Narcolepsy Was A Lifestyle...

    I was diagnosed a few years ago. After being with the same sleep specialist for sometime she suggests that I have had narcolepsy since a child. I was a sleep walker until 8 or 9 and also had horrible vivid colorful nightmares and sleep paralysis following the end of the walking...
    montanabuchanan montanabuchanan 36-40, F 5 Responses Apr 6, 2012

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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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    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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    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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    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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    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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    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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    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 4 Responses Jun 18, 2013

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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 1 Response Oct 29, 2014

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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 22-25 10 Responses Aug 18, 2008

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    It Would Explain a Lot

    but I'm unsure. I'm not diagnosed or anything, but I've been searching for possible causes of my "bad sleeping habits" and came across this. I already knew about narcolepsy, but I had thought that it was when people had attacks when experiencing strong emotions (for...
    musicspirit musicspirit 13-15, F 4 Responses May 2, 2009

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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 18-21, F 5 Responses Sep 13, 2009

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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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    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 22-25, F 16 Responses Sep 14, 2010

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    Memory and Dream

    When I tell people I have narcolepsy, they tend to not know what narcolepsy is. Clinical definition encompasses daytime sleepiness, with sleep paralysis and hypnagogic hallucinations, and in some (me included), cataplexy. Most people are even more blank once I've gotten that...
    Rhan Rhan 22-25, F 4 Responses Jun 26, 2007

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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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    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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    Medicines & Symptoms

    What medicines do you guys use to stay away? I've tried provigil, but I'm on the highest dose and is no longer effective. I have narcolepsy without cataplexy. For symptoms I have paralysis, nightmares, and the hallucinations when I first wake up. I'm on Effexor and it removes...
    xokenna xokenna 18-21 7 Responses Sep 21, 2013

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