Hey,
my name is Liana, i am 16 and live in South Australia.
I was recently given a provisional diagnosis of KLS about five weeks ago after having had about 7 episodes since December last year (2007).

I get a sore throat usually before every episode, and had many many many attacks of severe tonsilitis last year before getting my tonsils taken out early this year (they thought that the ‘spacey’ state was due to the effects of Glandular Fever, and although i was convinced this was not the case, i had no better way to explain it). However, i’m not too sure if this is related or not.

I’m very relieved to finally have some sort of explanation and other people who experience these symptoms as well. At the moment i’m coming out of an episode (i’ve read that some people seem to snap out of it… unfortunately it’s a drawn out process of going into it and coming out of it for me. the tiredness and hunger seem to wear off but i am left with the dream-like and confused feeling for longer) and it has started to hit me how much i’ve missed, including a biology exam and a drama production i was meant to be in. This has meant i’ve been rather miserable today as i’ve been hit with the possibility of missing my birthday (November) and/or christmas (and other occasions in general), and then the worry of how i will deal with year 12 next year. Luckily, i have some wonderful people in the medical field who are supporting me and trying to work with my school.

I am keen to talk to many people experiencing this, particularly others in Australia.

Best wishes!
Liana

Liana - 30 October 2008 07:48 PM

...but i am left with the dream-like and confused feeling for longer) and it has started to hit me how much i’ve missed,

That’s what happened to my daughter. She would come out of it left with “brain fog.” The longer the episode, the longer the recovery. A 3-week sleep could take a week for her to feel her brain fully functional again - like normal. A 3 day episode could take another day. It was astounding to us that she could just be curled up asleep up to 22 hours per day for 21 days at a time. And the little time she was awake during that time she was falling down, walking into doors and walls… like a ... ummm… drunkard.

And she, too felt like life was just passing her by - she missed so much of life.  Not just from KLS - she had other issues (migraines, allergies, endocrine problems (not found till later)) robbing her of her life.

-Naomi