I Have Narcolepsy

Personal Stories, Advice, and Support 492 People

    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
    41-45, F
    1 Response Jan 20, 2015

    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

    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

    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

    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

    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

    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

    I kind of feel like when the doctor told me

    that he believes I am narcoleptic, that it got my hopes up that things would be explained. That I would have this burden in a way relieved even though it would be replaced with the diagnosis. I am actually worried that I don't have narcolepsy now. That this is just the first...
    sleepygrace sleepygrace
    26-30, F
    1 Response Feb 17

    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

    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
    4 Responses Sep 28, 2010

    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

    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
    26-30, M
    1 Response Aug 23, 2015

    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

    Sleepie Tells All

    HELLO ALL, In 6th grade was the first time I realized I was different. To stay awake I would stab myself under the desk in my leg with a pencil to cause pain. Its a very temporary effect & doesnt really help. I am surprised I made it through High School. LOTS of very...
    Sleepie Sleepie
    41-45, F
    2 Responses May 9, 2012

    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

    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

    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

    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

    How I Lost Every Job I ever Had due to

    Narcolepsy: I've lost several jobs in the past due to (previously undiagnosed) narcolepsy. Unfortunately for me they were all through agencies so they could just "let me go" brief passing comment from the boss saying "don't bother coming back in tomorrow" - or worse a phonecall...
    Eyebr0wse Eyebr0wse
    22-25, M
    1 Response May 22, 2015

    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

    2nd half. i filed for disability.

    i was truely blessed to find someone who l truely loves me and supports me on my disorder. i even sold my car because i have so much fear of hurting someone else.i am extremly depressed because of all this. i get called lazy all the time. my family said you have worked your...
    ingridlime13 ingridlime13
    26-30, F
    1 Response Jan 5

    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, 2015

    Is anyone on disability

    for narcolepsy
    Goofy18 Goofy18
    41-45, F
    3 Responses Jan 20, 2015

    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, 2015

    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, 2015

    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

    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

    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

      I'm 13 and would like advice from the

    fellows out there who have narcolepsy or who might have advice. I got mono at age 8, never fully recovered. My parents thought it was normal, I wasn't getting enough sleep. I always knew something was wrong, but dealt with it. With years of bearing the laughs and rude awakenings...
    milla816 milla816
    13-15, F
    1 Response Dec 26, 2015

    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

    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

    suffering today now im home tablets dont always

    work as well when im in house
    iminyourthoughts iminyourthoughts
    41-45, M
    Jun 2, 2015

    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, 2015

    I absolutely hate it.

    I used to be obsessively punctual. Now I can't even be rely on myself to wake up on time. It's so incredibly frustrating! I' man highly independent person, and now I can't even be self sufficient.. Even medication is unreliable. This is a horrible disease.
    danii92 danii92
    22-25, F
    5 Responses Sep 5, 2015

    I am currently 16 years old

    and have only recently been diagnosed and placed on medicine for narcolepsy and cataplexy. I have tried 3-4 medicines and none of them seem to keep me awake, I still fall asleep in my classes and nap every single day after school. I have no motivation, I've gained weight and...
    HannahB16 HannahB16
    16-17, F
    2 Responses Nov 10, 2015

    The heaviness in my eyes,

    fighting to keep them open is torturous.
    Goofy18 Goofy18
    41-45, F
    3 Responses Jan 27, 2015

    Or at least it seems

    that way.. I spoke to my primary care physician because I was falling asleep while driving, constantly tired, and snoring. I got a referral to a sleep specialist and he told me that I might have sleep apnea but that he suspects narcolepsy. Honestly, I thought I was going to be...
    sleepygrace sleepygrace
    26-30, F
    Feb 16

    based on my symptoms do you think I might have

    narcolepsy? Picture attached. For the sleep paralysis I had it once 5 years ago. Then I had it once this summer, and then 3 times in the last month.
    bubbahobruce bubbahobruce
    18-21, M
    1 Response Nov 12, 2015

    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

    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

    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

    Today I felt so weak

    and almost spaced out the entire day. I felt so tired that I don't know really know if I remember all the material in my classes. Sometimes, I get really depressed because I see all my friends laughing and not having a care in the world and I'm so tired nothing really amuses me...
    Kelsey098 Kelsey098
    18-21, F
    4 Responses Sep 10, 2014

    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

    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

    I am under evaluation

    and the doctors think I have narcolepsy. I've started medication even though I'm waiting for my diagnosis. I have gotten better but I still get really tired, especially after work. I can't live on my own because of money and because I'm so tired all the time, I can't even stay...
    Pauiej Pauiej
    22-25, F
    3 Responses Sep 16, 2015

    I am currently 26 yrs old.

    i was diagnosed with Narcolpsy with Cataplexy when i got discharged from the military for not being able to stay awake. i was 18. i have worked job after job through out the years. i would fall asleep on the toilet. i never got a lunch because i was taking a nap. i even did...
    ingridlime13 ingridlime13
    26-30, F
    2 Responses Jan 5

    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

    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

    Arbonne energy fizz sticks have actually made

    me feel normal again. I thought I was managing narcolepsy fine, but after taking these it makes me realise just how good I can feel! Just another reason that makes this business the best thing I've joined in a long time.
    Smay95 Smay95
    18-21, M
    2 Responses Jan 21
    Chavon Chavon
    16-17, F
    1 Response Mar 13

    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

    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
    26 Responses Sep 10, 2008
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