• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

KLS -Or sleeping Beauty disease

Tia

Senior Member
Messages
247
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?
 

AFCFS

Senior Member
Messages
312
Location
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.
Kleine–Levin syndrome: a systematic review of 186 cases in the literature:

Summary

Kleine–Levin syndrome (KLS) is a rare disorder with symptoms that include periodic hypersomnia, cognitive and behavioural disturbances. Large series of patients are lacking. In order to report on various KLS symptoms, identify risk factors and analyse treatment response, we performed a systematic review of 195 articles, written in English and non-English languages, which are available on Medline dating from 1962 to 2004. Doubtful or duplicate cases, case series without individual details and reviews (n = 56 articles) were excluded. In addition, the details of 186 patients from 139 articles were compiled. Primary KLS cases (n = 168) were found mostly in men (68%) and occurred sporadically worldwide. The median age of onset was 15 years (range 4–82 years, 81% during the second decade) and the syndrome lasted 8 years, with seven episodes of 10 days, recurring every 3.5 months (median values) with the disease lasting longer in women and in patients with less frequent episodes during the first year. It was precipitated most frequently by infections (38.2%), head trauma (9%), or alcohol consumption (5.4%). Common symptoms were hypersomnia (100%), cognitive changes (96%, including a specific feeling of derealization), eating disturbances (80%), hypersexuality (43%), compulsions (29%), and depressed mood (48%). In 75 treated patients (213 trials), somnolence decreased using stimulants (mainly amphetamines) in 40% of cases, while neuroleptics and antidepressants were of poor benefit. Only lithium (but not carbamazepine or other antiepileptics) had a higher reported response rate (41%) for stopping relapses when compared to medical abstention (19%). Secondary KLS (n = 18) patients were older and had more frequent and longer episodes, but had clinical symptoms and treatment responses similar to primary cases. In conclusion, KLS is a unique disease which may be more severe in female and secondary cases.

But, what is more interesting, from the same article, is the mention of a possible viral connection:
The striking clinical features of the disease, selected reports of definite neuropathology in post-mortem cases and the high frequency of infections at disease onset led to a more organic hypothesis, most notably the possibility of a viral or post-infectious autoimmune encephalitis with primary impact on the hypothalamus.

If it is viral, who knows, maybe it can be re-activated like many suppose for EBV and CFS?
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
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.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
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.

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.
 
Messages
1
Location
Alkmaar
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.

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