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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. 70 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 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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    Related Experiences

    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 Jul 24

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    All my life, I’ve felt different, like I just don’t quite belong in any group that I’m a part of. Trying to fit in has led to me to trouble. I’ve drank heavily, smoked weed...
    empoweredh22 empoweredh22 22-25, M 1 Response 6 days ago

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    I am at a loss and need some help! I went to urgent care in February because I had this horribly terrible rash that itched uncontrollably and was painful. I had clusters of what...
    SweetJFowler SweetJFowler 26-30, F 1 Response 5 days ago

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    I have been diagnosed with Asperger syndrome. Sometimes it just seems like it doesn't fit at all except the unsocial part as most of my routines has fallen apart well I guess this...
    Joiss Joiss 18-21, M 1 Response Aug 10

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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 Jul 23

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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 1 Response Jul 28

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    I actually don't know for sure if I have Sjogren's; my second appt with the rheumy isn't until the 19th. I've had horrible dry mouth, throat, eyes, etc., for a while now (3+yrs). I...
    Notasouthernbelle Notasouthernbelle 36-40, F 2 Responses Aug 6

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    Calling all women with POS!!! I haven't had a period in a year. The past week or so I have been lightly spotting with severe cramps. Yet still no period! Has this happened to...
    TheUnpredictable9 TheUnpredictable9 18-21, F Aug 11

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    I have had raynauds since at least 4 years old, but I didn't know what it was until about 13yrs old. This disease has been so frustrating because I feel like nobody understands it...
    allisondela allisondela 18-21, F Aug 14

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    My doctor put me on levelen and told me to skip the white pills, so that I wouldn't ovulate. She told me to take the while pills once every six months to allow my body to keep...
    ChloeMaay ChloeMaay 18-21, F 6 days ago

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    https://www.kickstarter.com/projects/2084036675/artistic-autistic-awareness?ref=email My Kickstarter application is finally live. I have autism and I find the preconceptions...
    TheNakedPoet TheNakedPoet 41-45, M 4 days ago

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    I need help I can't find a girl that likes me and I mange to suppres. My tics really well and you would only really know if someone told you and well I think the girls I try to get...
    Sproketsocet Sproketsocet 18-21, M 1 Response 2 days ago

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    I had what I thought was piriformis until it became chronic, simultaneous with my toes becoming restless. That sounded more like RLS. Then I had an inspiration and started wearing...
    echinoderm echinoderm 51-55, M Jul 24

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    I've wondered it for quite a while, I do suffer from Generalised Anxiety Disorder so there's a bit of me that think it's more than that than CFS. I tend to ache all over on a...
    Reallifeperson Reallifeperson 22-25, M Jul 28

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    I was diagnosed at 27 due to tadpole pupil episodes. I always had a smaller pupil and droopy lid. Also a long time migraine sufferer. In the past two years, I developed new...
    telltalelemon telltalelemon 31-35, F Jul 29

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    I was at this 12½ year wedding day anniversary today. Way to many people. Couldn't focus on anything. Too much noise. And my phone died after the first 4 hours, but I was there...
    leejoonnieoppa leejoonnieoppa 18-21, F 5 Responses Aug 2

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    Do any of you keep like dairy/journal
    shadowfluffy6 shadowfluffy6 18-21, F 2 Responses 6 days ago

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    I'm quite shy and have Asperger's syndrome, and I desperately want to find someone who loves me for who I am. I doubt it'll be easy, but I hope I find them someday.
    Juri17 Juri17 16-17, F 1 Response Aug 5

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     I don't actually have Aspergers Syndrome myself(that I am aware of). I am posting this story becauseI would like...
    Jugemu Jugemu 31-35, M Aug 3

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    Barth syndromeFewer than 200 living males are known worldwide with this disease. Symptoms vary largely between patients, from life threatening to non-existant. No patient has all...
    Uncertain153 Uncertain153 26-30, M 1 Response Jul 24

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    In April 2012 I was officially diagnosed w/POTS Syndrome after several months of symptoms of worsening symptoms. I was one of the fortunate few who came across a neurologist at the...
    Jill73 Jill73 41-45, F Aug 6

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    Having Aspergers Syndrome is quite challenging for me. I have always felt like a ghost or a being living in another world in high school. Because of my particular interests, I have...
    loveVictorandDumas loveVictorandDumas 16-17, F 1 Response 1 day ago

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    I'm 18 and every time I look at myself in my bra & panty..I stare. I stare at my reflection and I'm happy with how I was born; bare left chest no pectorals/nipple/muscle just my...
    ardorzie ardorzie 18-21, F