Post
Experience Project iOS Android Apps | Download EP for your Mobile Device

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. 72 People

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    Related Experiences

    Ok so this is important for anyone who has CFS or anything like it. I have had this illness for 4 1/2 years now, and I've been to a fair number of doctors. But it took awhile to...
    Invisibleninja12 Invisibleninja12 18-21, F 1 Response Jan 14

    Your Response

    Cancel
    Hello, My name is Mathilda Panzarella i have 17 years old and i'm a french girl so excuse me for my bad english.. I sign up on this social network, because since a long time, i...
    PanzarellaMathilda PanzarellaMathilda 16-17, F 10 hrs ago

    Your Response

    Cancel
    my name is Ciara and I'm 19 and I am currently in the hospital post laminectomy. I have had back pain for about a year now. I had an inflamed SI joint that I recieved 3 steroid...
    cjacobs34 cjacobs34 18-21, F 1 Response 17 hrs ago

    Your Response

    Cancel
    I'm a 21 year old female with possible hypermobility syndrome/EDS Type 3 or fibromyalgia. My mum has hypermobile joints but hasn't been diagnosed with HMS/EDS but has been...
    Kari9349 Kari9349 18-21, F Jan 1

    Your Response

    Cancel
    A new information website has been developed for stiff-person syndrome to educate, empower, and advocate. www.thetinman.org
    TheTinManOrg TheTinManOrg 51-55 Jan 2

    Your Response

    Cancel
    My partner was diagnosed with Stiff Person Syndrome in July 2014. Due to my own ignorance about the illness and my own selfish needs of refusing to accept her sudden disability, i...
    GeekyGirl82 GeekyGirl82 31-35, F Jan 12

    Your Response

    Cancel
    Hello there! I'm currently making some researches about Maladaptive Daydreaming Disorder. A disorder in which the person uses daydreaming as a defense mechanisme to escape from...
    RichardAndon RichardAndon 22-25, M 6 Responses Jan 20

    Your Response

    Cancel
    Can someone please tell me they're symptoms of polycistic ovarian syndrome x
    iwantababy111 iwantababy111 16-17, F Jan 21

    Your Response

    Cancel
    I have it. My favorite symptom is that people with it prefer nonfiction over fiction which I do.
    bobherry bobherry 16-17, M 1 Response Jan 6

    Your Response

    Cancel
    Having more problems with my right bicept, I guess I'll talk to my doctor about it, Still under stress from an unsuccessful consult about my neck injury, Doctors seem to judge me...
    JEM404 JEM404 41-45, M Jan 17

    Your Response

    Cancel
    I had my diagnosis at 19, I have several other medical problems which have resulted in very limited mobility. I have good bouts where I can move much more easily but I have 'flare...
    noonespecial44 noonespecial44 26-30, F Jan 19

    Your Response

    Cancel
    Post diagnosis things went sour, my carefully constructed world started collapsing around me. Everything I had done to cope with a condition I didn't realise I had became...
    Teab Teab 41-45, M Jan 20

    Your Response

    Cancel
    When you have this it's easy to become absolutely obsessed with things, and that's not easy to deal with, even when I became devastated after finishing a book series that there are...
    Dakurti99 Dakurti99 13-15, M 4 days ago

    Your Response

    Cancel
    how do people react when you tell them you have aspergers? I am always so nervous to tell people!
    kristykaz121 kristykaz121 18-21, F 11 Responses 3 days ago

    Your Response

    Cancel
    Asperger's is like a curse to me. I didn't ask to have panic attacks in cluttered noises. I didn't ask to not have a normal social. I CERTAINLY didn't ask to drag my family and...
    msvlogwars msvlogwars 16-17, F 23 hrs ago

    Your Response

    Cancel
    Got in trouble at school so many times because of it. Its ruining my life to be honest.
    idfwuu idfwuu 13-15, M 4 Responses Jan 1

    Your Response

    Cancel
    How do you guys manage CFS? Seems like I can't live a normal life like I used to.
    awesomesauce2 awesomesauce2 22-25, M 4 Responses Jan 8

    Your Response

    Cancel
    This is an oddly specific group
    Gabbi97 Gabbi97 18-21, F 2 Responses Jan 12

    Your Response

    Cancel
    Which explains why everybody hates me. :D
    Symbiopsychotaxiplasm Symbiopsychotaxiplasm 26-30, F 4 Responses Jan 16

    Your Response

    Cancel
    Found a very good read! Check it out http://www.drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure#Explanation_of_the_Fatigue_Problems_in_CFS_Patients
    awesomesauce2 awesomesauce2 22-25, M Jan 18

    Your Response

    Cancel
    Asperger's symdrome is something thats gives me a lot and takes a lot too, I can recite 100 digits of pi easily, dolve a rubix cube in 1 min 13 seconds, and tell you anything about...
    Kringle95 Kringle95 18-21, F 2 Responses Jan 20

    Your Response

    Cancel