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I Have Narcolepsy-cataplexy Syndrome

Narcolepsy-Cataplexy Syndrome anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Narcolepsy-Cataplexy Syndrome. You're not alone. 69 People

    Purgatory

    I am 38 years old and my Narcolepsy/Cataplexy started roughly 5 years ago after I was placed on a CPAP for sleep hypopnia. The cause is unknown at this time and have little hope of them discovering the cause in my lifetime. I was always a joker, a amature comedian of sorts for as...
    robertcorn35 robertcorn35 36-40, M 1 Response Jul 28, 2009

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    My First Experience..

    Hi, I'm 20 years old. I was the happiest person in the world until i got struck with Narcolepsy-cataplexy syndrome. My symtoms started a few months after my high school graduation at 18 years old. I didn't pay much attention to them, thinking they would go away, until i entered...
    jc4951 jc4951 18-21, M 4 Responses Sep 1, 2008

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    A Complete Reversal

    I was a normal teenager until my junior year in high school. I started to collapse when I would get angry or sometimes when I would laugh. I  would fall asleep all the time including when I was driving. I went through numerous test before they finally correctly diagnosed...
    Jaytricks Jaytricks 22-25, M 2 Responses Jan 3, 2010

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    Me Too!!

    I don't think there are two people with the same symptoms or need the same treatment, when we have this condition. I was diagnosed at age thirty two, after experiencing most of the symptoms from early childhood. I was unable to play sports, games, and had to avoid anything funny...
    BillieBoy BillieBoy 70+, F Mar 31, 2012

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    Years Later - The Lightbulb Comes On

    I am a 35-year-old female social worker and college instructor. This is a long story but I would really appreciate if some of you would take the time to read it and weigh in on your advice. I have no where else to look. I have struggled with Bipolar affective disorder, mild-OCD...
    cluelessfor35years cluelessfor35years 31-35 Nov 29, 2012

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    I'm Hung!

    I never really had any problems growing up, until the ripe age of my sophomore year. I used to be able to laugh so hard until my stomach hurt. That is a feeling long gone for me, as in my main years from Sophi-Junior years I would feel an urge to drop to the ground after laughing...
    HungTrinh HungTrinh 18-21, M 2 Responses Oct 3, 2012

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    It A Family Thing

    son has UnDx narcolepsy at this time ..Dx cataplexy .. insomnia.. atomic behavior.. flunked 3 sleep test no rem..were in our 12th year..went to the narcoplesy networks 2012 conference...
    narcats narcats 46-50 Oct 1, 2012

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    My Life Changed

    My name is Kristen and im 16 years old, I use to be just like any other normal kid, riding my bike, hanging with my friends and laughing until I turned 12 years old, I starting feeling tired all the time and I always wanted to sleep, At first my parents thought I was just being...
    krissibear krissibear 16-17, F 1 Response Jan 28, 2009

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    Understanding Your Body and Doing Your Best

    To be honest, I would not know how to live a life without a chronic illness. It would either be too unfamiliar or just replaced with other day-to-day worries. I am almost 23 years old and my Cataplectic episodes started when I was 15. It was much worse in high school...
    Red4 Red4 22-25 Jul 21, 2009

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    Is It Possible?

    I have suffered from sleep disroders my whole life. When I was 10 years old I had a type of sleep apnea called Hypopnea. Every night would result in me seeing spiders and snakes and getting out of bed screaming and running away out of terror. After months of this happening I went...
    gingerbaby92 gingerbaby92 18-21, F 1 Response Jun 19, 2012

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    YES! You Have Narcolepsy!

    Im just shy of 29 in three days, Im a wife and a mother of a two year old sweet cheeked little boy. Two weeks ago I went for a sleep study, and four days ago I was told I suffer with narcolepsy with sever cataplexy. In 2009 I had the flu so terribly bad I thought I was dying. I...
    stephers127 stephers127 26-30, F Nov 30, 2013

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    Stay Away From Effexor Xr

    I have been dealing with and trying to hide my condition for years. I went to a joke doctor and pretty much told him I needed to have effexor for my small attacks of cataplexy. That turned out to be the biggest and stupidest thing I ever did. Around my early twenties I started...
    Samash Samash 41-45, M 3 Responses Apr 25, 2011

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    Uncertain

    I have Narcolepsy and Cataplexy. I was diagnosed in 2012 so I have not known for long what I was experiencing was indeed Narcolepsy, I just thought I was feeling the effects of getting older. I started feeling tired and needing naps after work, then about 6 months later, I...
    Scared2laugh Scared2laugh 41-45, F Jul 7, 2013

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    I Have Narcolepsy,cataplexy

    i now know that having researched the symptoms,ive had these since my early 20,s..i always thought that something was not normal about my constant need to fall asleep...but it wasn,t until my early 40,s that this became a "real" problem and i went to see my gp.this resulted in...
    afewzzs afewzzs 46-50 1 Response Nov 15, 2011

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    Edinburgh Girl

    Is there anyone in edinburgh with this medical condition. I feel so isolated here , the meds I'm taking don't really work. Any advice from anyone?
    Mizteeqlady Mizteeqlady 26-30, F 1 Response May 7, 2010

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    3rd Day Of Provigl And Not Feeling Any Different :(

    Today was my 3rd day of taking Provigl and I don't feel anymore awake. I thought it wouldn't take too long to start feeling some kind of difference and my muscles are sooo weak today I can't even lift my arms to use a spray bottle. How dumb is that? Is there something else I...
    sleepypeggy sleepypeggy 31-35, F Apr 7, 2013

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    Life With A Glitch

    I've been tested a million times for sezuires, countless MRIs and Cat Scans, and when those doctor's threw their hands up they sent me to a shrink.  I've been under treatment for 3 years for bipolar depression and panic attacks, I thought I had it nailed but then then bam...
    rainsdelirium rainsdelirium 26-30, F 5 Responses Nov 3, 2009

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    Answers Finally!

    I have always been tired and sleepy when I was a teenager and beyond. I remember numerous times waking up and the next class was walking in and staring at me sleeping on my backpack and a lovely imprint on my cheek from the buckle. I would always do the nodding off dropping my...
    sleepypeggy sleepypeggy 31-35, F Apr 7, 2013

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    I started school in January of this year (2013)

    and because of the course (PSW)I was taking it required all shots be up to date as well as getting the flu shot. Well mid February I switched into a different class (Medical office administrative) which required us to attend class in the afternoon instead of mornings... The...
    Lhunt Lhunt 36-40, F 1 Response Dec 26, 2013

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    Genetic Sleeping Dissorder

    i was born with a genetic sleeping dissorder that comes from my moms side of the family so my life included lots of tests and getting diagnosed wrong i actually have cataplexy and sleep apnea with alot of the signs of narcolepsy like falling asleep and not being aware of it witch...
    sleepy22 sleepy22 18-21 Nov 12, 2012

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    Cataplexy

    i have been diagnosed with this....can fall at any time...always aware but not able to respond...am wondering if anyone has been successful with medication..I have been put on keppra(which seems to be for epileptic seizues which is not part of cataplexy)and epipreme?....an anti...
    dh0509 dh0509 66-70 1 Response Apr 17, 2012

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    Its Hard...

    For the longest time i thought my sleeping was normal and that i was fine, i started realizing that it wasnt true, once i had sleepovers and i would always fall asleep early, then wake up and be fine and then like 10 mins. later go back to sleep and wake up like an hour later and...
    xxshortie29 xxshortie29 13-15, F 1 Response Dec 11, 2009

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    Still Sleepy, Xyrem, Provigal, Still Would Like To Meet Some More Narcoleptics In My Area Lol

    Currently trying out Xyrem and why is it so hard to find more sleepy heads..
    HungTrinh HungTrinh 18-21, M Aug 9, 2013

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    I Am Normal Again

    I am a 23 year old nurse with severe narcolepsy with cataplexy. I could not stay awake between naps during my sleep study and went to sleep and into rem within 2 minutes, twice immediately, with all five naps. Without meds I fall asleep during any monotonous task. It doesn't...
    lookingforme228 lookingforme228 22-25, F 3 Responses Aug 15, 2011

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    I May Have It Too

    I used to have fainting spells when I was 10 (the last one, I was only 12) and feel like I have no energy left. In my earliteens, I was diagnosed with Iron-deficiency Anemia (which runs in my family). It had an adverse effect on me during my periods, leading me to feel drowsy and...
    DiamondPrincess89 DiamondPrincess89 22-25, F Oct 9, 2013

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    Need Help?

    I will be attending Baylor University in the fall as a Pre-Pharmacy/Biomedical Engineering student, and am currently working on an internship project in conjunction with RateADrug.comto collect primary user data about side effects and benefits from commonly used treatments for...
    agrant4 agrant4 16-17 Apr 1, 2011

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    Still Have Fun And Laugh

    What can I say I have Narcolepsy-cataplexy Syndrome. A couple of years before this I was diagnosed with Postural Orthostatic Tachia Cardia Syndrome. So I have fun with both syndromes. I finally can tell the difference between the two. At the beginning I did not know which...
    sleepygal1 sleepygal1 46-50 2 Responses Dec 27, 2011

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    Related Experiences

    I learned only a few years ago that I have Asperger's Syndrome and am clumsy as well as frequently speak very wierdly sometimes, and am socially awkward. I am also narrow minded in...
    Fenrirfenn Fenrirfenn 18-21, M 4 Responses Jul 3

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    I have Russell silver syndrome. It has given me health problems,I am way under the average weight for a normal 15yr old, I am 4'9 and will no longer grow.
    EvaJL EvaJL 13-15, F Jul 13

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    I've just found out today I have Carpal Tunnel Syndrome .. it's hard for me to participate in Color Guard ..and soon I feel like I would have to stop ..bc the pain is crucial
    lynn1497 lynn1497 16-17, F 4 days ago

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    23+ years ago I was diagnosed with MS, even though I never had a positive test. No blood test, MRI, spinal tap,etc was ever positive for MS. My symptoms were never an exact match...
    bonsaigirl bonsaigirl 56-60, F Jun 29

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    **** I get when I tell someone I have aspergers "But you’re nothing like ____!"
Sometimes I’ll tell someone I have aspergers and they’ll just happen to have a friend or...
    nikkianni nikkianni 13-15, F 4 Responses Jun 29

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    I feel like my universe is just so out of alignment.....everything i have known for so long is just not there anymore :0(
    itswonder4all itswonder4all 41-45, F 3 Responses Jun 30

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    Hello im Amiee i'm 17 going on 18 on July 20th you may have remembered my mothers post Cheryl about my condition. I am still having the hip pain in both my hips. I had the MRI of...
    KiraAyita KiraAyita 16-17, F Jun 30

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    It has been seven weeks since I woke with severe ear pain. I had a few weeks of dizziness and what seem to feel like water in my ear before that. I went to ER later that day...
    ksrooney ksrooney 56-60, F Jul 1

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    I was diagnosed with TTS when I was 24, but my symptoms really started when I was about 21. I am currently 29. It always felt like I was walking barefoot on gravel, no matter what...
    happymegwv happymegwv 26-30, F Jul 8

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    It's the reason 95% of everyone I have ever known has eventually pushed me away. I'm not trying to sound like a pity party but that's been my real world experience. I'm lonely...
    KusanagiShiro KusanagiShiro 26-30, M 4 Responses Jul 10

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    I have EDS and chronic joint pain. I also have Tendonitis. I wonder if my Tendonitis has anything to do with my EDS.
    elenanicole elenanicole 16-17, F Jul 11

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    I was diagnosed with Asperger's when I was 16, because the school nurse recommended that I get tested for AS. My teachers thought I was [pause] different. When somebody says you...
    RazorKenny RazorKenny 26-30, M 2 Responses Jul 13

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    I think I have Asperger's. I have been diagnosed with many disorders over the years, depression, anxiety, ocd, ptsd, and we have touched on Asperger's, but never has it been a...
    13thgen 13thgen 36-40, M 2 Responses Jul 16

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    Five different specialists have now told me I should start taking my medication now. Actually it could be six or seven but I don't want to. It isn't going to cure me.
    Teab Teab 41-45, M 2 Responses 6 days ago

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    I was recently diagnosed in December 2013. I have been doing Ivig infusions ever since. I am on baclofen, iron, meclizine, cymbalta, lexapro, suboxone for pain, toradol, vimovo...
    CatFlag CatFlag 31-35, F 1 Response 5 days ago

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    I've had depression and anxiety pretty much my whole life, leading to two hospital stays in my late teens. At that stage it was suspected to be some sort of psychosis, or...
    BJH72 BJH72 41-45, M 16 hrs ago

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    Something I am having increasing difficulty with at the moment is that nobody knows exactly how difficult things are for me. This includes myself. I don't know how easy...
    Teab Teab 41-45, M 1 Response Jun 29

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    My autism ruined most of my life. I wish I could relive as an autistic anthro fox
    Miserablechildhood Miserablechildhood 13-15, M 4 Responses Jun 29

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    I was just diagnosed this week. Now what?
    VBLOVE1106 VBLOVE1106 22-25, F 3 Responses Jul 5

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    my parents didn't tell me until i was eleven years old, so i found it a big shock. i spent my whole life thinking i was your usual normal-person-without-any-major-challenges...
    hans13 hans13 51-55, F Jul 5

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    NO ONE CARES ABOUT ME !! I WISH MY YOUNGER BROTHER WAS NEVER BORN THEN I WOULD NEVER BE SAD AND CRYING RIGHT NOW😭😭😫😭😭😭😫😢
    bela5562 bela5562 13-15, F 3 Responses Jul 6

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    Ugh. Joint pain is so bad when it rains. I just want to wrap up in a huge heating pad.
    ImBatmanNow ImBatmanNow 51-55, M 1 Response Jul 7

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    Sometimes I wonder what my family thinks with me having Asperger's or how long they've been keeping it from me. When I found out in February, my mom confessed to knowing I had it...
    kelseytoby kelseytoby 16-17 2 Responses