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I Have Narcolepsy

Personal Stories, Advice, and Support 395 People

    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 Mar 17

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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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    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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    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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    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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    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 17 Responses Sep 14, 2010

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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

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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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    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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    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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    A Life Half Asleep....

    Right now I'm getting really pissed off with this dam condition... I guess I always thought it would get gradually better. Wrong! The opposite continues to happen and currently I find myself wondering how on earth I'm going to keep up the pretense of being able to do my job...
    katycustard katycustard 26-30, F 2 Responses Oct 7, 2013

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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 10 Responses Aug 18, 2008

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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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    Someone's Gotta Have It, Right? Just Like The Lottery.

    I always fell asleep in class. Everyone does though. However I knew something was wrong when I fell asleep during a math test. I woke up and hurried along trying to finish my test, but a couple minutes later I started nodding off to sleep again. This year was very eventful for...
    maidenofanguish maidenofanguish 16-17, F Aug 10, 2013

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    A Narco Life

    Hi i am shametrius, I am 18 yeas old I have been diagnosed wit Narcolepsy since i was 5 in the 5th grade. My parents, knew some was wrong with me because, i was very off balance going to sleep standing up and sleeping alot . When i was in kindergarten my teacher call home and...
    lilbit18 lilbit18 18-21, F 1 Response Jun 26, 2013

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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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    Can Somebody Please Be Kind Enough To Answer This?

    Hi! I'm Paula, I'm not sure if I should go to the doctor and have myself check for narcolepsy. I've been reading a lot about narcolepsy lately and the symptoms kinda fit what is happening to me. I sleep everywhere and anywhere literally even in dangerous places once I sit down...
    Paula1991 Paula1991 22-25, F 3 Responses Apr 29, 2013

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    I Don'T Know What To Do Now...

    At the beginning, I didn't have any options as to what was going on.. I just thought that I was really really tired, but I guess that wasn't the case. This had started a few weeks, to about a month ago, and all of a sudden I was just super dizzy. And my mom was doing my makeup...
    KyGirl16 KyGirl16 16-17, F 1 Response May 6, 2013

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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

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    Mom That Was Loseing Mind

    I was diagnosed in 4/08  with Narcolepsy w/o cat.!!!  I am a mother with 4 children ages 8,  twins that will be 4 in Dec and a son that will be 2 in Dec!!!  I could not stay awake no matter what!!!  i suffer w/ depression  anxiety and have interesial...
    Smiley79 Smiley79 26-30, F 2 Responses May 14, 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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    Did You See That Bunny?

    The first time I noticed "visual disturbances," as my primary likes to say, was probably middle school that I can remember. The bus ride home from school would have me staring out the windows and at complete stops, the road would move around, get bigger and smaller until i...
    beatlesbby92 beatlesbby92 18-21 1 Response Jun 17, 2013

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    PART 1: The Diagnosis

    Well, Its encouraging that "others" exist in the REM world of Narcolepsy! Maybe we have meet in those intense vivid dreams at one time? Anyhow, my story starts at 12 years old. I remember my very first cataplexy attack while I was in bed. I "awoke" (so I thought) to see a neon...
    radiantheart777 radiantheart777 31-35, F Aug 8, 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 46-50, F 6 Responses Feb 16, 2008

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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

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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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    Narcolepsy: Not Alone Campaign

    Check out Julie Flygare's web page: http://julieflygare.com/narcolepsy-not-alone-gallery-map/
    NarcolepsyDreamer NarcolepsyDreamer 16-17, F Aug 12, 2013

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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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    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 16-17, F 4 Responses May 2, 2009

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    i remember being diagnosed back in 2010.

    i really find it hard to stay up most of the time and i refused to take anything to help it. i sometimes drink energy drinks but it really doesnt help. i go to school only four hours and its so hard when every five seconds my teacher is screaming at me to wake up like i can...
    cheveral cheveral 70+ 1 Response Feb 2

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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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    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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    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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    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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    Wow! Never realized there were

    so many of us out there! We're probably just too tired to find each other. I thought it was odd that I was always tired in high school. I was a high achiever, swim team captain, and constantly dozing off. I slept in class for four years in college. I never missed a class. I...
    Sarcasticvixen Sarcasticvixen 36-40, F 5 Responses Mar 2

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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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    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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    Hurry Up & Wait

    So I went back to the doc today.  Since we are moving in a month, she doesn't want to change anything or prescribe anything new.  She said that she will make notations as to what is wrong for whatever doctor I happen to find once we have moved.  Perfect! ...
    sleepymommy sleepymommy 31-35, F 1 Response Oct 19, 2010

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    My Life Was Consumed With Sleep.....

    Let me start this off by saying I was a freshman in High school When this finally was recognized. Most of my life I've been a hyperactive child. One moment I'm up, the next I'm down. My mom kinda knew I had ADHD. I never stopped moving. But my life soon hit a point where I...
    RoTTenKoRn RoTTenKoRn 18-21, F 3 Responses Oct 3, 2009

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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 16-18, F 5 Responses Jun 6, 2008

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    Looking Bright For The Future!

    I have had Narcolepsy with cataplexy for more than half of my life. But lately things have been taking a turn for the best! I just wanted to post this because for so long I have felt left out, misunderstood, and not satisfied with my treatment. But I think I have finally found...
    NarcolepsyDreamer NarcolepsyDreamer 16-17, F 1 Response Jul 24, 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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    There Was Once A Good Psychiatrist...

    By my early twenties, I had been diagnosed with with complex-partial seizures, severe ADHD, and went through about five years of taking meds that didn't help to finding a psychiatrist (I went to the neurologist at her behest, who ordered sleep studies) who finally diagnosed me...
    crobat47 crobat47 36-40, M 1 Response Jun 29, 2013

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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 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 6 Responses Dec 3, 2008

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    LIVING the Life You Get-narcolepsy

      I developed excessive daytime sleepiness and hypersomnia in 1970, at the age of 12.  Research into the dynamics of sleep and what constituted abnormal sleep had begun only a few years earlier.  The field of “Sleep Medicine” was not even in practice...
    miles2gob4isleep miles2gob4isleep 56-60, F 5 Responses Jul 7, 2009

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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 2 Responses Mar 14

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    Some Hope For My Future.

    So, I finally went to a really great sleep specialist a few weeks ago. He scheduled the night-time sleep study and an MSLT for the next day. The sleep techs were absolute jerks. The woman who oversaw the P.M. study was the most condescending person I've ever encountered in my...
    terris0n terris0n 36-40, F 2 Responses Jun 14, 2013

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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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    Narcolepsy With Me

    i   maybe have narcolepsy   ,i am excessive daytime sleeping ,it's seriously  effect my life ,my learning ,my professional career  and  my future,now  !i am in college,i  have to learing some knowledge to  get ready for work,but i...
    zhangp973 zhangp973 22-25, M 1 Response Apr 14, 2009

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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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    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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    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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    Dozydelilah By Name and By Nature!!!

    I have narcolepsy cataplexy complex.  i,v been over 6 years diagnosed. i,v done all the keeping back my emotions, why me, poor me, depression. but the truth of it is. you have to pick yourself up, and dust yourself off, and keep going. and you know something, lifes not so...
    dozydelilah dozydelilah 31-35, F 1 Response May 6, 2009

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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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    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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