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Lessons from ME/CFS: Finding Meaning in the Suffering
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KLS -Or sleeping Beauty disease

Discussion in 'General ME/CFS News' started by Tia, Nov 20, 2012.

  1. Tia

    Tia Senior Member

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    http://pittsburgh.cbslocal.com/2012/11/15/local-teenager-suffering-from-sleeping-beauty-syndrome/

    http://en.wikipedia.org/wiki/Kleine-Levin_syndrome

    Kleine–Levin syndrome, KLS, or Sleeping Beauty syndrome is a neurological disorder characterized by recurring periods of excessive amounts of sleeping and eating. At the onset of an episode the patient becomes drowsy and sleeps for most of the day and night (hypersomnolence), waking only to eat or go to the bathroom. When awake, the patient’s whole demeanor is changed, often appearing “spacey” or childlike[1][citation needed]. They also experience confusion, disorientation, complete lack of energy (lethargy), and lack of emotions (apathy). Individuals are not able to attend
    school or work or care for themselves. Most are bedridden, tired, and uncommunicative even when awake.
    Most patients report that everything seems out of focus, and that they are hypersensitive to noise and light. In some cases, food cravings (compulsive hyperphagia) are exhibited. Affected individuals also tend to lose interest in hobbies and activities that they used to be fond of before. In males, instances of uninhibited hypersexuality during episodes have also been reported. In females, instances of depression have been reported.[2]


    Could be good to know, right?
    merylg and AFCFS like this.
  2. AFCFS

    AFCFS Senior Member

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    NC
    It is interesting, I had lcome across this in Google searches. I think I dismissed it because of the relatively young onset for most people.
    But, what is more interesting, from the same article, is the mention of a possible viral connection:
    If it is viral, who knows, maybe it can be re-activated like many suppose for EBV and CFS?
    merylg likes this.
  3. merylg

    merylg Senior Member

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    Sydney, NSW, Australia
  4. WillowJ

    WillowJ Senior Member

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    interesting. I have seen some cases on the news, but none of these patients or their families (nor the reporters) were aware that this disease had a name.
    merylg likes this.
  5. merylg

    merylg Senior Member

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    Sydney, NSW, Australia
  6. WillowJ

    WillowJ Senior Member

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    encephalopathy seems a reasonable classification
  7. AFCFS

    AFCFS Senior Member

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  8. taniaaust1

    taniaaust1 Senior Member

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    I had all of the above except the food cravings part during the second year and third years of my ME (that year thou I was severe may of been an easier year then it is now.. as back then the hypersomina was so bad I spent nearly all the time asleep). I guess I easily qualified for this diagnoses if I'd seen someone who knew about it. One time I slept for 3 whole days straight without waking. Being awake for only 20-30 mins in 24 hr periods (just short to eat and go to loo times) wasnt uncommon for me at all in that year (IF I was able to walk to the loo.. I'd stagger there.. still half asleep bumping into walls as I walked.. occassionally fall asleep on the toilet as often I couldnt even stay awake a few minutes before later on getting myself back to bed).

    When awake .. I usually couldnt communicate as too hard on my exhausted and very tired brain, couldnt think to put sentences together (so used to sign at times for food or water to be brought to me). I used to be in a severe tired state and needing to just drop back asleep even if I'd sleep for a couple of days straight without waking.

    From my experience Im going to say that I think this illness is probably another possible coexisting ME one and research in that other ilness may lead to showing issues in ours.

    If anyone is interested in ME symptom illness progressions.. The ME complex state I'd had before the KLS (sleeping beauty) one was a very viral presentation ME state (high fevers, sore throats, swollen glands. After symptoms shifted out from that KLS (sleeping beauty) like state, my ME changed into a severe FM complex state but one in which I wasnt falling asleep all the time so more functional.
  9. Alexander1976

    Alexander1976

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    Alkmaar
    that's great news to have a normal life ( as far as you can call it normal )

    i have kls for almost 25 years now and still no treathment here in holland nothing helps the docters say

    i have tried a lot of things to get it under control the things that seem to help is cognitivety training and anger manedgement learn how the body reacts to stress and signs of anger helped me a lot plus i did something to change the nurelogic patherns i started working out i used sterroids (totesteron with naposim pills dna pills and sth with t3 pills and dna pills)

    ather that i started to change in my behavior so to say more meture behafior and the anger an cognitive skills started to evolve in a good way ik do not know why exactly but i have full control with kls now i can feel when i'm doing to mutch i have so to say between 2pm and 4 pm a moment were i feel tierd and down but when people leave me alone it takes about 15 to 30 minutes to recover and then i come back like normal

    once every 2 to 3 months a have a view day's or weeks depending on the situation and levels of stress a attack where i fal asleep and sleep for 16 to 20 hours a day i hope this stay's like this or compleetly go's away

    kiend regards

    alexander

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