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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

    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...
    Red4 Red4 22-25 Jul 21, 2009

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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...
    krissibear krissibear 16-17, F 1 Response Jan 28, 2009

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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...
    lookingforme228 lookingforme228 22-25, F 3 Responses Aug 15, 2011

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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...
    dh0509 dh0509 66-70 1 Response Apr 17, 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...
    narcats narcats 46-50 Oct 1, 2012

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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...
    sleepypeggy sleepypeggy 31-35, F Apr 7, 2013

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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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    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...
    robertcorn35 robertcorn35 36-40, M 1 Response Jul 28, 2009

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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...
    DiamondPrincess89 DiamondPrincess89 22-25, F Oct 9, 2013

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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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    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...
    stephers127 stephers127 26-30, F Nov 30, 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...
    sleepy22 sleepy22 18-21 Nov 12, 2012

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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...
    BillieBoy BillieBoy 70+, F Mar 31, 2012

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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...
    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...
    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...
    afewzzs afewzzs 46-50 1 Response Nov 15, 2011

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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...
    rainsdelirium rainsdelirium 26-30, F 5 Responses Nov 3, 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...
    gingerbaby92 gingerbaby92 18-21, F 1 Response Jun 19, 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...
    HungTrinh HungTrinh 18-21, M 2 Responses Oct 3, 2012

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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...
    Lhunt Lhunt 31-35, F 1 Response Dec 26, 2013

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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...
    sleepygal1 sleepygal1 46-50 2 Responses Dec 27, 2011

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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...
    jc4951 jc4951 18-21, M 4 Responses Sep 1, 2008

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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...
    cluelessfor35years cluelessfor35years 31-35 Nov 29, 2012

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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...
    sleepypeggy sleepypeggy 31-35, F Apr 7, 2013

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    Related Experiences

    I have Tourette's syndrome.
    mrhollingswortg1992 mrhollingswortg1992 22-25, M Apr 8

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    I have a question for everyone :) So I was diagnosed with Asperger's Syndrome a few years ago and am aware about it for a while now. Lately, however I have been having random...
    EurydiceKallos EurydiceKallos 16-17, F 2 Responses 3 hrs ago

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    There has been no official diagnosis. But, all my life I have felt very different from everyone else. Job after job I have had a difficult time forming close relationships and...
    pottersclay pottersclay 41-45, F 1 Response 3 hrs ago

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    I was diagnosed at the age of 17. Up until that point i spent my life with the perallasis and docters not knowing what it was. They thought i had a type od muscular distrophy and i...
    tabitha35 tabitha35 31-35, F Mar 19

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    So I am 21 years old and I suffer from Poly Cystic Ovarian Syndrome, I have done my research and unfortunately it comes with so many issues. But it is common and I would love to...
    o1Nadia1o o1Nadia1o 18-21, F Mar 28

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    Was diagnosed back in high school. Felt like it held me back from many things. Yea, I did go 2 dances, junior and senior prom, but people treated me like I was retarded. I'm highly...
    HottRoddTX HottRoddTX 26-30, M 4 Responses Mar 28

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    I found out I had Poland's Syndrome in my 30s ( I am now 48) when I was referred to a plastic surgeon. Had an operation but had to remove the implant as my chest cavity kept...
    gamordente gamordente 46-50, M 5 days ago

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    I was diagnosed with TS when I was very young. My case is mild and my tics are slight but I do feel the internal side effects of TS like anxiety, hyper vigilance, and some OCD. I...
    artMusicBrew artMusicBrew 36-40, M Mar 24

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    I am the middle of 5 2 older brothers 2 younger sisters. My brothers were always allowed to do what ever they want. Stay up late,drive, and lots of other fun stuff. My parents took...
    Jimmy1313 Jimmy1313 22-25, M Mar 26

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    I was just diagnosed a few months ago but I think I've had it for a few years now. The doctors actually found the tumor in my chest before they realized my eye drooping was Horner...
    Pinkyjolie Pinkyjolie 26-30, F 1 Response Mar 27

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    I personally don't have CFS but my mother has it and it's been one of the most difficult things to deal with on a daily basis. I have determined that my mothers stress levels...
    IamLerato IamLerato 22-25, F 1 Response 2 days ago

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    I started with pain at the first of January. Woke up one morning with the feeling that I was being stabbed in the shoulder with a knife. Used heat/ice thinking I had pulled a...
    msv123 msv123 51-55, F 2 Responses 19 hrs ago

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    Wow I dont know where to start.... after having being misdiagnosed on 12/27/2012 and sent home when i arrived because i was in so much pain i could not walk. Returned to the ER on...
    momndom momndom 31-35, F 3 Responses Mar 22

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    I am 32 years old, diagnosed three years ago. I have had 5 surgeries on my leg and 3 on my shoulder. I am on anti-depressants, nerve painkillers, anti-inflammatories and...
    gimpy55 gimpy55 31-35, F Mar 26

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    But it's not what everyone thinks it is. When you say 'aspergers', people think of socially awkward people who are obsessed with computers or science. But in reality, it's a lot...
    sarah19597 sarah19597 16-17, F 7 Responses Mar 27

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    I get reconstruction surgery July 16th!!! SO excited, but not being able to play field hockey because of it is going to suck. I'm terrified of going under but I don't even care...
    marinagrace marinagrace 13-15, F a week ago

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    Anyone with this won't to talk ? Just diagnosed today and would love to talk to others with it
    Mum2one Mum2one 22-25, F 1 Response 1 day ago

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    I have Postural Tachycardia Syndrome, as I only have issues with my heart rate not my blood pressure when standing. Does anyone else have this? What helps? I'm waiting on a call...
    Konig316 Konig316 26-30, F 3 Responses Mar 30

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    My names Alaina, I'm 17, and about three years ago I was diagnosed with Chiari Malformation Type 1. So freshman year of high school I started having really bad headaches, and found...
    burtala burtala 16-17, F Mar 27

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    Two last night! In the first, I was still in highschool I guess. I was on the bus ride home after a long and exhausting day and the girl sitting next to me asked if I wanted to go...
    PinkMellow PinkMellow 18-21, F 3 Responses Mar 18

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    Hello, I'm a mother of one handsome 9 month old boy. When my husband and I left the hospital June 29, 2013. We were never told that our son was born with Poland Syndrome. After his...
    Bernadzikowski Bernadzikowski 26-30, F 2 Responses Apr 2

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    Intramarine Isolation Syndrome. It is what I have, my disease. Cool. Quiet. Sometimes green, sometimes blue. Dark, or shining in the sun, but it always feels like no one ever...
    WickedScullyOfTheWest WickedScullyOfTheWest 31-35, F Apr 6

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    I am new to this as I noticed several posts about pots syndrome I was wondering if someone could help me? I have suffered with this since I was 14 (I am now 19) but was only...
    potsie2222 potsie2222 18-21, F 2 days ago

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    Fortunately I am self-employed and can sleep the hours I "like" to 6AM-1PM. Not that I really want to be this way, but every time I try to reset to normal time, it only lasts a...
    Pozadam Pozadam 46-50, M 1 Response Mar 19

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    I really need someone who knows what is going on to help me make sense of things. My partner of just over a year.. has spent the year breaking up with me. I am always fighting...
    maveric01 maveric01 41-45, F 1 Response Mar 20

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    I'm at a crossroads now, as I have four young children with my husband of 8 years, who has undiagnosed Autism. I have always just given my husband his way. I thought I was just...
    GMetz34 GMetz34 31-35, F Mar 20

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    Mild cp, deformed hand, poor vision and hearing, poor teeth, weak heart, something undiagnosed with my brain (sort like a stroke but not), type 2 diabetes, psoriasis, soliios, ADHD...
    dacraww dacraww 22-25, M Mar 23

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    Well my dad used to tell me off for eating. I always had a revved up metabolism which continued well into my teens. I could rival any teenage boy. But I was active- I never...
    NekroNomikon NekroNomikon 18-21, F 1 Response Mar 24