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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. 79 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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    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 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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    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'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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    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 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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    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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    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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    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 66-70, F Mar 31, 2012

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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 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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    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 May 7, 2010

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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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    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 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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    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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    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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    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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    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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    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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    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 Dec 11, 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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    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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    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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    Related Experiences

    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...
    cerysmorris1221 cerysmorris1221 18-21, F 3 Responses Mar 8

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    I have Kleine Levin Syndrome, but I prefer calling it the sleeping beauty syndrome, it makes me more comfortable. I live in a very small town where no one knows about this...
    briannanicolex briannanicolex 18-21, F Mar 13

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    I had narcolepsy in the summer of 2011 when i was 10, now i am 13 and i dont know anybody with narcolepsy around my age so if u do or if u are around my age could u let me know...
    cerysmorris1221 cerysmorris1221 18-21, F 1 Response Mar 9

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    I was known as the "Weirdo" during school. I have never had any real friends in my whole life until freshman year. Kids never wanted to play with me and called me "stupid" and...
    lollipopchick lollipopchick 22-25, F 7 Responses Mar 10

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    Hi my name is Edward, I was diagnosed with Russell Silver Syndrome when I was every young. I'm 18 now and about to go off to college. My whole life I have known about my...
    EdwardLayman EdwardLayman 18-21, M Mar 17

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    not me but my youngest son. we adopted him and his birth parents were drug and alcohol addicted. I am only just learning about this syndrome and the problems that my son will have...
    RobertaSunset RobertaSunset 36-40, F 5 days ago

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    I don't know if because of the other medications I HAVE to take or what but I use Restasis every day twice a day like the frickin commercial says. I also take Fish Oil and...
    steverick steverick 56-60, M 1 Response Mar 3

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    Not sure what to think, 20 years old, for almost two years, I will wake up in the early hours with this intense pain, sweating, and know that I need to get to the toilet. I will...
    Ashlearyan Ashlearyan 18-21, F Mar 7

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    I'm seeing a specialist soon as they suspect i have ehlers-danlos hypermobility type. I just wondered if everyone who has it has the stretchy skin as i only have it mildly on my...
    bloodandfire91 bloodandfire91 22-25, F Mar 18

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    and I was wondering how else did? What are some tics you have and how do you manage them?
    zodiac1888 zodiac1888 18-21, M Mar 20

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    When I was a kid I basically thought I was an alien because I felt so different the first language i learned was german but i was going to school with children whose mother...
    loafemon1 loafemon1 18-21, F 2 Responses a week ago

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    All through my short life I have experienced the troubles of being an outcast, being told to simply "get involved" but that's not at all easy. Well not for me anyway. I can do...
    thedimone thedimone 13-15, F 3 Responses 5 days ago

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    For as long as I can remember I had felt....a little different than others. I didn't care about most things. I didn't want or need much social activities. I had, and still have, a...
    secretlyhonest1 secretlyhonest1 22-25, M 3 Responses 3 days ago

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    Just diagnosed this week although they called it neuralgic amyotrophy. I believe there is another name for it as well, do you know? Does this all mean our immune system has...
    tickatocken tickatocken 41-45, F 1 Response 3 days ago

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    I never really understood why I acted the way I acted and said some of the things I said until I was diagnosed . I never knew why most of my relationships never worked out and why...
    JoshRobin JoshRobin 18-21, M 2 Responses 3 days ago

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    I recently realised that I had never been able to feel what others feel. i feel bad for people, but I can't put myself in their shoes... when I see someone crying I generally...
    loafemon1 loafemon1 18-21, F 3 Responses 1 day ago

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    Pues aquí estoy, me acaban de diagnosticar esto, y fue como una gran patada... llevo ya mucho tiempo con cosas: depresión, crónica, cansancio,fatiga, herpes zozter, problemas en...
    AleCogh AleCogh 51-55, F Mar 10

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    People say "oh your lucky, I wish I could stay at home and not work" and I just want to slap them. Id give anything to be able to work again. Yes I'm home but I can't even help...
    Besillybeyou Besillybeyou 26-30, F 2 Responses Mar 17