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. 88 People

    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
    Apr 1, 2011

    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
    Oct 1, 2012

    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

    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

    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
    Nov 12, 2012

    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

    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
    3 Responses Jun 19, 2012

    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


    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
    46-50, F
    Jul 7, 2013

    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
    Nov 29, 2012

    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
    36-40, F
    Apr 7, 2013

    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

    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
    1 Response Nov 15, 2011

    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

    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


    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

    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
    36-40, F
    Apr 7, 2013

    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


    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
    1 Response Apr 17, 2012

    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
    2 Responses Dec 26, 2013

    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
    31-35, F
    1 Response Nov 30, 2013

    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

    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
    Jul 21, 2009

    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

    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

    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
    2 Responses Dec 27, 2011

    Related Experiences

    I can't tell if I'm having one of those rare periods/moments in life where my own feelings are so heightened/strong that I can't keep myself from practically being "bi polar" with...
    kk1874 kk1874
    31-35, F
    Apr 21
    Hey guys I'm in a huge rut at the moment and I feel like complete crap. I've fallen in love with a girl I met online on a depression support app. She's from the US and I'm from the...
    DeanMart1n DeanMart1n
    18-21, M
    3 Responses Apr 21
    So here we are, Ep is about to close. It's been nice talking to some of you, finding out there was someone else with the same issues. I wish you all the best :)
    vanetuli vanetuli
    18-21, F
    Apr 21
    i have wanted to be pregnant since before i can remember i was diagnosed polycystic ovarian syndrome at age 11 and it suck because i have been trying for years and every one around...
    Kpee1997 Kpee1997
    18-21, F
    1 Response Apr 20
    My attacks started 6yrs ago,woke up one morning and felt really sick,like a virus but it kept coming back every other day. I feel it was triggered by stress and a tender tum as I...
    SoothingSoozie SoothingSoozie
    41-45, F
    1 Response Apr 19
    My 3rd grader has struggled in school from Headstart up to this very point. I noticed delays in his speech right before two years old. I expressed my concerns to his pediatrician...
    Vette601 Vette601
    36-40, F
    Apr 19
    Well my story is a lot like some of yours, I started young on comet and sometimes dirt from my backyard... I like to eat things with gritty texture for most of my childhood and...
    BadMomKira BadMomKira
    22-25, F
    1 Response Apr 19
    Hey.. My name is Thomas and i have Poland's syndome. I was born in 1970 and didn't know what it even was til i was around 28. I had a really hard time growing up. Kids can be very...
    tommymac70 tommymac70
    41-45, M
    Apr 17
    My symptoms of WPW started about the time that I was in the fifth grade. One day I was home and I felt really dizzy, to the point that I had turned white all over and felt as if I...
    adrienleigh adrienleigh
    13-15, F
    Apr 17
    Hi, I was just diagnosed with SMA Syndrome after 10 years of my stomach being sick and multiple hospitalizations for being unable to eat or drink. I currently have a j tube after...
    jaclynleigh6 jaclynleigh6
    22-25, F
    Apr 17
    I am a 23 year old female who suffers from Poland's Syndrome. It's actually good to know there are some people out there who can relate to all the daily problems PS creates. We...
    uocgreece uocgreece
    22-25, F
    Apr 17
    I am 19 now, almost 20... I haven't been on here for a few years, but I think I'll give it a go. My parents and I thought I had Chronic Fatigue Syndrome for 4 years before...
    Invisibleninja12 Invisibleninja12
    18-21, F
    Apr 17
    A description of today's episode: I went home from work vomiting today. This time I was actually driving and puking at one point on my way home. Thanks to 'Murica for plastic...
    Doomflower Doomflower
    31-35, F
    3 Responses Apr 16
    Mama why: The tears in my eyes are falling down My face as you read this you'll cry too because it's true in my life I had try to understand mom Why you hurt me inside Why you...
    LucidxxShivery LucidxxShivery
    26-30, F
    2 Responses Apr 15
    How walking your dog can change your life One of the best activities you can do if you are a pet owner living in an apartment complex, is to take your dog out for a “pack walk...
    karunakat78 karunakat78
    36-40, F
    Apr 14
    Hello I'm Michelle but call me kris.I am from the USA.I suffer from bipolar as well as anxiety.
    deleted deleted
    2 Responses Apr 14
    I've been through a blender, you could say. Age 2, I'm diagnosed with a genetic eye condition that eats away at my vision. Age 6, I'm diagnosed with mild Asperger's Syndrome. Age...
    AsYetNameless AsYetNameless
    13-15, T
    6 Responses Apr 14
    Hi my name is Sherrie and i was diagnosed as a teenager. I am 58 years old now and i have whst i would call a good life. I am married for 30 years and we have adopted 3 children...
    Sherrie50 Sherrie50
    Apr 13
    i really like children, their mindset and the way they see the world is something that i find to be pretty damn fascinating, simply because it's something ONLY children have, i...
    NitorTnT NitorTnT
    26-30, M
    1 Response Apr 13
    I'm pretty sure being aspie has.it has its ups and downs.It messes up relationships so badly for me.
    deleted deleted
    3 Responses Apr 11
    This is my story. It is long, but I hope you all can relate to it. A year ago I went on a catholic retreat called Kairos and I gave a speech on my ideals and how to find them and...
    cmom96 cmom96
    18-21, F
    Apr 9
    So... I make straight A's, never get in trouble, win school awards and awards in general. I'm on a scholarship team and I'm eligible for many other ones... I do all the house work...
    deleted deleted
    1 Response Apr 9
    I'm so hurt that I can't even read all the experiences because my tears are in the way
    deleted deleted
    2 Responses Apr 8
    My boyfriend hasn't been diagnosed or anything, but I was watching a programme about Asberger's and something resonated with me. If he does have it, I'm sure it's only mild, but it...
    anniechan anniechan
    18-21, F
    2 Responses Apr 7
    I was born with PruneBelly Syndrome (lack of abdominal muscles) I had some corrective surgery at age three and the dr cut through and removed my navel, so I don't really remember...
    Jmacaroon Jmacaroon
    51-55, F
    Apr 7
    Looking for other survivors of S.S. for support, as I work thru this Big Bowl of ****. Am going thru integration therapy and deal with chronic PTSD as a result of the years of...
    Rhonda87 Rhonda87
    51-55, F
    1 Response Apr 6
    Ran across this site while looking for some information & feel like it would be worth it to at least put 1 post out there & say hi. Basically, I am 38 single mom of a teenager but...
    meowkittys2002 meowkittys2002
    36-40, F
    7 Responses Apr 6
    30 reasons i love my Aspie (or just a individual person wich i was lucky to met) This is my story, and Just mine. U dont need to relate. Because every person is different, with...
    deleted deleted
    Apr 6
    i hate that i can't communicate effectively. i know that my husband gets frustrated to the point of disgust. i just assume not talk to anyone. i have chronic pain and fatigue to...
    41-45, F
    1 Response Apr 5
More Stories