I Have Kleine Levin Syndrome

A Kleine Levin Syndrome anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Kleine Levin Syndrome. You're not alone. 26 People

    In An Episode Now!!!!!

    My son was diagnosed October of 2012 with KLS. Before his diagnosis, he experienced 4 episodes and after his diagnosis he has had 4 episodes and is in one right now. My son has a really good doctor from Akron Children's Hospital. As soon as I started describing his symptoms to...
    Dontarious16 Dontarious16
    18-21, M
    Jul 19, 2013


    I am 47 years old female. I feel like I've spent half my life sleeping. I'm not sure if its kleine-levin or not but the episodic sleeping has happened a lot. I started sleeping a lot when I was a teenager. I would binge eat but no purging. It got worse in university the...
    Shelley24 Shelley24
    51-55, F
    Sep 3, 2013

    Looking For KLS Doctor

    My daughter was recently diagnosed with KLS and we are looking for a specialist who can treat her. We live in Pennsylvania. Does anyone know of anyone?
    KLSmom KLSmom
    51-55, F
    1 Response Mar 16, 2013

    I Have Kleine Levin Syndrome? Maybe? Who Knows? I Don't

    Hi there.. I am 39 and dealing with something similar. The sleep doctor has not diagnosed Kleine Levin Syndrome for me- in fact, most recently, he has said that technology is not at the point where they can diagnose me. But he can prove that I have excessive daytime sleepiness...
    Meanomaly Meanomaly
    41-45, F
    1 Response Nov 24, 2013

    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 condition, so they do not understand when I fall into episodes. A lot of people think I'm faking which is hard, I was diagnosed in 2012...
    briannanicolex briannanicolex
    22-25, F
    Mar 13, 2015

    I Have Kls

    hiya all ..well im a mum i have kls and dont know anyone one els with it so realy just looking for friends awith same thing ..love to hear from anyone ..inbox me ..or e.mail me or find me on facebook ..many thanxs ..hope to hear soon xx
    kellytinkerbell kellytinkerbell
    31-35, F
    3 Responses Jul 12, 2011

    Freaked Out About College...

    I am 18 years old and although I haven't confirmed that i have KLS, it's pretty much a positive. I have A LOT of the symptoms. My first episode was my junior year; I thought I ODed on cough medicine from my intense fever/cough the week before or something lol. I failed two tests...
    estellechou estellechou
    18-21, M
    5 Responses Jul 5, 2011

    Haven't Been Diagnosed

    Since I was 12 years old I have had these episodes. Now that I'm 27 they are few and far between but still take a toll on my life. I am more alert than I used to be and for the most part can take care of myself. When I have had recent episodes I keep thinking this is the last...
    Cariboo Cariboo
    1 Response Jun 5, 2012

    I Have Kls

    I first got KLS when I gave birth to my son on May 31, 1994. I went into the hospital with a regular temp of 98.6. When I came out, it was 97.6. 18 years later, it still is. Most KLS sufferers don't have temperature issues but the part of the brain that is affected handles...
    lorifromseattle lorifromseattle
    1 Response Jun 20, 2012

    Pathetically Ideopathic

    No official diagnosis other than it's not narcolepsy, having 3 of the 4 major symptoms.  What am I left with?  Maybe depression, maybe brain damage from obstructive sleep apnea, maybe, maybe, maybe... So sick of hearing, "We're just not sure."  I don't fit any of the normal...
    Knottylizzie Knottylizzie
    36-40, F
    5 Responses Jan 11, 2011

    Coming Out Of An Episode

    Well, I thought I had outgrown my KLS, but I am about a day into coming out of an episode. I had my first episode when I was 16, and I read in most cases your first episode happens with some life event , being traumatic, a cold, or a vacation. I call my episodes being "sick...
    snyder412 snyder412
    18-21, F
    Sep 7, 2012

    I Have Klein Levinson Syndrome To

    This is very disturbing to me.  I have a six children and and they get very scared when i sleep for 3-5 days.  I have very bad back  and chest  pain before the onset of  sleeping. My husband is great  he takes care of me. I just want to know what...
    rgadison rgadison
    Sep 12, 2010
More Stories