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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

    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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    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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    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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    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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    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 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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    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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    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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    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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    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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    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 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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    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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    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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    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'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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    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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    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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    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 26-30, F Oct 9, 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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    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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    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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    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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    Related Experiences

    I'm currently in the process of analyzing some videos for my psychology class. The videos are the videos of dysfunctional families with young children that keep screaming for...
    RichardAndon RichardAndon 22-25, M 1 Response Apr 11

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    So, I went to see my doctor today and he suggested that I might have Asperger's syndrome. I don't really know much about it, so was hoping someone on here could enlighten me...
    Ambernonymous Ambernonymous 18-21, F 1 Response Apr 17

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    I found this image about this anime "Parasite" or "Parasyte", I think it's called both ways, I just end watching the anime and I remember thinking about the parasites like Asperger...
    SusAssasins SusAssasins 16-17, F a week ago

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    I have aspergers and I thought meeting other people who have it would help me cope but it hasn't . It's like I can't even relate to those people who have it because were too alike...
    JoshRobin JoshRobin 18-21, M 2 Responses Apr 5

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    Yes, another malady. Actually I've had it since age 20 when I injured my elbow pitching. I loved to pitch and was asked to walk on to the UW Madison team back in 1975. I'll...
    steverick steverick 56-60, M Apr 7

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    I am starting to branch out. To be honest, it doesn't have to be over night, but very gradual. I used to think remaining silent and unnoticed would be better for me, but then you...
    LeaderOfThePack LeaderOfThePack 13-15, M 2 Responses Apr 13

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    I have this but I have periods of denial which mess me up mentally because admitting to having such a disabling disease is so difficult. I go to college because my parents forced...
    fallenstar23 fallenstar23 22-25, F 1 Response Apr 16

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    Ever since I have been diagnosed with Aspergers my parents have always said no i dont. However, they really dont know the half of it. I know i have it mild but i still have it and...
    internationalkoala internationalkoala 18-21, F 7 Responses Apr 17

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    I had a stroke March 2nd. I was in the hospital from March 2-March 25. Then I was in a rehab facility till April 19th. I started feeling this burning ,stabbing pain in my right...
    moonstar312 moonstar312 36-40, F 1 Response a week ago

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    In the past 64 years since I contracted polio, nothing has been discovered to cure the later effects of polio, but Gabapentin for nerve pain (300 mg.) really helps me sleep at...
    julesgarden julesgarden 61-65 4 days ago

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    I haven't been diagnosed yet. my Dr is trying to eliminate anything else it could be, but I am suffering. I'm having a hard time going to work everyday cuz i can't get out of...
    kareenmarie kareenmarie 36-40, F 3 days ago

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    Breaking up is never easy regardless of condition. For someone with aspergers its all the more difficult. All the little things you would do in the day which revolved around having...
    Sakaratte Sakaratte 26-30, M 1 Response 3 days ago

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    Hard decisions are never easy whether you have a condition or not. You have to do what is best for you even if it hurts someone else. When you really care about someone often the...
    Sakaratte Sakaratte 26-30, M 15 hrs ago

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    When I was a kid I never felt the same as any of my peers. They were always too loud, too rude, or too confusing for me to want to interact with. Most would bully me for my...
    Wandering2 Wandering2 18-21, F 1 hr ago

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    my life has always been hard since the day i was born.
    dacosta4949 dacosta4949 22-25, M 3 Responses Apr 13

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    Well, I'm actually diagnosed....
    SAffRONisGODxSATAN SAffRONisGODxSATAN 13-15, F a week ago

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    first of all I found this by chance and I almost started crying. I was diagnosed with PS when I was born. my right hand was small and webbed with the middle digits missing and my...
    Everrisingmoon Everrisingmoon 18-21, F 2 days ago

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    I'm only 24 and I'm having severe back pain. Has anyone with Larsen Syndrome had back pain that was diagnosed and treated? What can I do? From what I can tell my problem might...
    Coiraingeal Coiraingeal 22-25, F Apr 16