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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. 71 People

    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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 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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    Related Experiences

    I'm so glad I found this. Many of your stories are so similar to mine. I've seen twenty six doctors, having been diagnosed with fibromyalga, chronic migraines, osteoarthritis and...
    jsxburt jsxburt 46-50, F 1 hr ago

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    Hey All, I'm a 28 year old female with what I think is CVS. Every few months I am awoken in the middle of the night with the worst stomach ache in the centre of my abdomen and I...
    starjj starjj 26-30, F 1 Response Dec 7

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    I was diagnosed with HAS a few days ago - The initial cause was that I am experiencing eye issues and saw an ophthalmologist who then referred me to a neurologist who made the...
    barbarasayshi barbarasayshi 41-45, F 1 Response 6 days ago

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    I think. I'm no doctor, but I was reading the symptoms and I know I know that's no way tell tell if you have it. I'm emotionless, I don't make eye contact, I'm clumsy and awkward...
    TransmutedHeart TransmutedHeart 18-21, F Nov 21

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    So many people without it have no idea of the pain it brings along. Today, I'm meeting with the Lender for our new house, and I can't control the neck tics and I'm hurting on a 8...
    jeepers92 jeepers92 41-45, M 2 Responses Nov 22

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    I think I have Aspergers, I love arts so much I think it's the only life where I want to be, I love seeing great murals an architect designs, I can get obsessed and lost when I...
    perennialsorrows perennialsorrows 31-35, F 4 Responses Nov 27

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    I can't meet people's gazes. I have single minded focus on certain things. I am clumsy (found a way to help that.) I usually end a conversation just because I can't continue it, I...
    Ditum Ditum 18-21, M Nov 28

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    I thought I needed a good vent so here goes. Sorry if there is TMI. Every since I started my period when I was 11 I would be in excruciating pain, I would have to have time off...
    xxkerry1990xx xxkerry1990xx 22-25, F 1 Response Dec 2

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    A few years ago, I moved from the east coast of the United States to the southwest to go back to university after taking a year long break from school, and I didn't know a single...
    uglyhands uglyhands 22-25, F Dec 4

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    I was finally diagnosed as being on the spectrum on November 2nd, 2014. The test used was the Gilliam Asperger's Disorder Scale and it was a three hour test done over three visits...
    lyricalongings lyricalongings 31-35, F 1 Response Dec 7

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    The doctor finally told me I have it a year ago but so far no one believes it. Looking to meet others who would like to talk about it.
    keravon keravon 51-55, M 1 Response Dec 8

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    I've tried to use it to my advantage. I'm gifted with writing and I believe Aspergers along with an abusive home environment help to give me that as well as other skills. Being...
    KnaisGuy KnaisGuy 22-25, M 3 Responses Dec 8

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    This **** is no joke. The pain is pretty severe. I plan on having surgery, but I have to wait till after Christmas.
    Xplictt Xplictt 22-25, M Dec 11

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    I've struggled all my life socially. I never made a single friend until I turned 14. I was always "that weird, quiet girl." People were cruel to me and I could never figure out why...
    SecretGaygent SecretGaygent 22-25, F 5 Responses 5 days ago

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    My daughter has BCS. She's 6yrs old now. She was diagnosed when she was 18 months old. Her body was shunting itself when I was pregnant with her. She's currently on Coumadin. She...
    annagracesmom annagracesmom 41-45, F Nov 30

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    Has anyone else read the Michael Vey series of books. Kind of Awesome that TS has a champion. :)
    jeepers92 jeepers92 41-45, M Dec 10

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    I have a twin brother that survived Guillain-Barré Syndrome or GBS. He was diagnosed at the age of six and it took a year for him to get treatment and get over the disorder. GBS...
    tinytornado95 tinytornado95 18-21, F 1 Response Nov 26

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    I got diagnosed when I was 3 and I have it in both eyes. Just a few months before that I had a brain tumor. I can not begin to image what kind of stress this put my parents under...
    macyl macyl 18-21, F Nov 30

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    I have Hypermobility Ehlers Danlos Syndrome (EDS). I also have Postural Orthostatic Tachycardia Syndrome/dysautonomia (POTS). Ehlers Danlos syndrome is a connective tissue...
    jahoz jahoz 41-45 5 days ago

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    I am well acquainted with how disruptive motherhood can be to a woman's personal and professional autonomy. I will not be waxing poetic about it either (today of all days). I too...
    Tannasheart Tannasheart 46-50, F 1 Response 2 days ago

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    I was diagnosed with Duane Syndrome in my right eye when I was just a baby, when my Dad noticed I couldn't move my eye. From a very early age I remember being in the hospital...
    baaraah baaraah 18-21, F Dec 5

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