Hello everyone!
Well, last Thursday was the first time I had ever heard of Kleine-Levin Syndrome, and that was from the mouth of the neurologist, telling me I have it. I’m 20 years old, and live in Tasmania, the small island at the bottom of Australia. Four years ago exactly a few friends of mine organised to go on a trail ride, and invited me along. I’d had some, but little experience with horses, and as luck would have it, my horse bolted down a hill and threw me off. I was knocked unconscious, and that was my summer holiday gone, as it took me about three months to fully recover from the concussion. I finished year 12, and moved to the bottom of the island to go to university, and failed a lot of my subjects over two years, as I would just sleep instead of studying. When exams came it was awful, I just needed to sleep, so I didn’t get much study done! I just wasn’t coping at all, so I moved back home, my parents sent my brother and I to New Zealand to visit friends and for an international holiday (most of which I slept through) and I came back and got a casual job at a pet shop. I had to leave after a month, as I just got exhausted, and had to come home to sleep. I haven’t had a break from it since my accident, those four years ago, and in the last 3 months, I’ve been sleeping anywhere from 12-17 hours a day. And weird food cravings… I eat curry paste on toast for brekky, and vinegar on lettuce leaves, anchovies and stuffed olives.. sometimes I wake up in the middle of the night feeling starving, and I’ll eat half a jar of stuffed olives. Consequently, I’m overweight, but too tired to ever get out and exercise. There’s no one qualified in the state to treat it, so I have to wait for a doctor to fly down from Queensland. How rare is it exactly? My mum’s psych . manual says that in 1991 only 100 cases had been diagnosed. Does anyone know the current figures? Am I the only one in Australia?
Apparently I’ll be prescribed amphetamines, which may help with losing the voracious appetite. Does the sleepiness go away entirely? Does anyone know how to turn the hunger off? And people speak of ‘sleep attacks’ - well, mine’s been constant for 4 years - how normal is this?
If anyone has any answers it would be much appreciated!

Jemima

Hi Jemima,
This is Alanna. I am 18 (almost 19) and I have had KLS for about 5-6 years. You aren’t the only one that has constant episodes. Everyone with KLS is different and everyones episodes vary. My first major episode was when I was 15 and that landed me in the hospital. I couldn’t clear for 3 months until my mom took me off the medications they had me on. Ever since then episodes would come and go. I was able to make it through high school. Right now my episodes are so frequent and I have lost 9 months out of the last 14 months. I am currently in an episode and this one is the longest one I have ever had (other than when i was 15 and misdiagnosed). I used to sleep 18-22 hours a day, then 16-20 hours, and now I’m sleeping 12-16 hours. I also get very hungry. That’s been hard on me. The appetite for me has been starting to get better the past few months. When I wake up I look at the time and try to not eat for an hour and then I’ll have breakfast. I try to watch a long movie (Anne of Green Gables, which is about 3 hours) and then after that I’ll have lunch. I try and wait another few hours for dinner and then usually I’ll have a snack before bed. It’s working somewhat because I can still fit into me jeans. : ) Maybe that could help you? About the medications. I haven’t found any medications that work. On the amphetamine, I wouldn’t recommend that because for me it’s easier to sleep during the episode then to function. I’m going to tell you what happens to our brains when we are sick. I got a functioning MRI test when I was healthy and when I was in an episode. the first scan i took was when i was healthy. that one showed up perfectly and it said i’m left brained. my speech, language, and hearing were processed perfectly. the second scan i did when sick. that scan showed my left part of the brain was shut down. it’s very difficult for my brain to process speech, language, hearing, and sight when ill. also, there is about a 20% blood and oxygen shortage to my thalamus region. the doctor said there are definite differences of functioning abilities when I’m sick and when I’m healthy. when I’m sick both my language and hearing abilities are not working properly. the doctor did confirm with these tests that i do have kleine-levin syndrome. the doctor told my mom that the results are very important because no one can control which side of the brain they use, how the brain functions and responds, or how much oxygen and blood go to the brain. he said this is not a choice and that this is completely an organic problem, not a behavioral problem. he said there is no possible way a person can fake it. and that’s why this test was so important. it proved that something is causing my brain to malfunction when ill. he said all the symptoms (memory loss, over-sleeping, over-eating, heightened senses, etc.) that i experience when sick are consistent with the results of the brain scan. Well I hope this was helpful and I hope you start to get better sometime soon. Hang in there, I know it’s hard because I’m in your position going through constant episodes but we will get better one day and this illness does go away. Just stay positive and keep your head held high. Healthy thoughts sending your way. : )
-Alanna