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I Have Narcolepsy

Personal Stories, Advice, and Support 410 People

    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    I have no idea if I do.

    I just have a question. Does narcolepsy also include falling asleep when under stress? When I have an argument with my wife for example, my brain seems to kick into "sleep mode". Anyone else relate?
    ImBatmanNow ImBatmanNow 51-55, M 2 Responses May 3

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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 7 Responses Mar 2

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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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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'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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    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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    Living With Narcolepsy And Cataplexy

    Hi my names Willow! I was diagnosed with Narcolepsy and cataplexy when I was 17 yrs old. Now I'm 25. I can't say it's gotten any easier? I can't work, drive, I was really overwhelmed by this when I was younger.In a lot of ways i feel excluded from society.One thing I have taken...
    Willowstired2 Willowstired2 26-30, F 1 Response Aug 26, 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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    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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    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

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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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    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 26-30, F 4 Responses Jun 26, 2007

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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 Mar 17

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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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    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 May 15

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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 1 Response May 5

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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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    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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    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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    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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    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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    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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    Late Bloomer

    Hello my name is Angel and I am a 35yr mother of 4 ,I have recently gotten diagnosed with narcolepsy with cataplexy . it's like one day I was fine went to sleep and woke up with cataplexy not sure how long the narcolepsy has been going on as I have been tired for as long as I...
    angeldewitt angeldewitt 36-40, F Jun 26, 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 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 4 Responses Jun 14

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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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    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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    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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    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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    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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