Does anyone here suffer from Kleine levin syndrome?

[peacefultwo]

If so how do you cope? I was lucky and had a great consultant so my diognose did not take long.

Edited December 31, 2010 by peacefultwo

[admrpeter]

Have you tried coffee, seriously . everybody gets tired and lazy thats why coffee is a billion dollar product.

[insane_alien]

Have you tried coffee, seriously . everybody gets tired and lazy thats why coffee is a billion dollar product.

 

you do know caffeine is ineffective at removing the symptoms of sufferers of this condition right?

[peacefultwo]

I take 400mg of Modafinil every morning to try and help lessen the sleep. Coffee makes no difference.

 

Have you tried coffee, seriously . everybody gets tired and lazy thats why coffee is a billion dollar product.

 

Tired yes. Lazy no. I am sure you would change your statment if you lived my life for a week

[michel123456]

If so how do you cope? I was lucky and had a great consultant so my diognose did not take long.

 

You are 51, isn't it? When did the symptoms appear?

[Marat]

Kleine-Levin Syndrome is usually episodic and becomes less severe as the patient ages. Have you noticed these aspects in your own case? The syndrome is so rare that it is difficult to be certain what are characteristic features and what are idiosyncratic variants.

[peacefultwo]

Kleine-Levin Syndrome is usually episodic and becomes less severe as the patient ages. Have you noticed these aspects in your own case? The syndrome is so rare that it is difficult to be certain what are characteristic features and what are idiosyncratic variants.

 

At 47 I had my own business and no problems by Christmas that year I was in hospital. Was very lucky that while staying with a friend the following May I collapsed and ended up in Stoke Mandavelle Hospital who transferred me to John Radcliffe in Oxford. I ended up under the care of one of the best sleep consulants in Europe who diagnosed it when I was 49. I dont fit the critera in age (too old) sex (mainly male) and certianly it has got better the first two years I would go to sleep and drift in and out of consciousness for weeks at a time when I came round I never remembered a thing. It still happens now but in days rather than weeks. A huge reason why it is so hard to diagnose is that you can also have periodswhen you fuction quite normally but have no memoryand many doctors will pass you on to Physioligists who think you have dissociative behavior. I am lead to berlieve that I am only one of two people who have it in the southern/western part of england.

[Marat]

An interesting aspect of the disease is that its onset usually follows some viral infection, and in teenagers at least, episodes of excessive sleep (sometimes as long as 18 hours a day) can be followed by sexual voraciousness. I find this intriguing since male bats, when they awake periodically during hibernation, are also sexually voracious, so this analogy makes me wonder whether Kleine-Levin Syndrome might have some connection with a generally lost but potentially revivable human capacity for hibernation.

[clemgirl]

My brother has KLS, so I don't know personally how to cope, but I know he has a hard time with it. He just graduated from high school, so he is younger, but it has taken a toll on him. Right now we are in the process of getting him officially diagnosed & into some sleep studies. I know there is nothing doctors can do to cure it, but I have heard there are some medications to take to make you more alert during an episode. Although, they say not everyone reacts the same way. His biggest help to deal with the episodes is having support from family and friends. We have to understand what he is going through and try to still let him lead a normal life, while keeping an eye out for any signs of early onset.

[Marat]

The good news is that some people grow out of this, and for them it remains just an unpleasant memory from high school days.

[Chris Ziemann]

Well i'm only a kid but I think I have a theory of Kleine Levin Syndrome... Well I think that the people who are affected by it, there bodies waste energy like a non energy saving light bulb they waste it so the body has no energy to keep going so it needs to rest. People without the Syndrome are like energy saving light bulbs we store the energy and people affected don't? This might be true you never know! what do I know i'm only 12. Just trying to help!