Nathalie's KLS Story
I developed Klein Levin syndrome in 1997 (aged 17 years), but was not diagnosed with it until September 2005. I had asked various doctors about the possibility of KLS but they all said it wasn't. The doctor that finally diagnosed me said it was a classic case and having spoken to other sufferers I am convinced that is the case.
The first morning I noticed feeling 'ill' was the night after I had been to a party, I felt, what I could only describe as drunk, despite only having a few drinks. I went to work, still feeling abnormal and very very tired. My boss said I could go and sit in the staff room for half an hour, in which I sat down and fell asleep. She then sent me home and I went straight to bed. Over the next few days my behaviour became very unusual, singing out loud in public, dancing, throwing food at my parents, being abusive to strangers. Yet all the while trying to continue on as normal all I wanted to do was sleep. I was then taken to the doctors who admitted me to the local hospital. (When there I was able to sing 'My hat it has 3 corners' in German, throwing videos around and struggling to be free.) They sedated me twice and admitted me to the Mental Health Ward - despite my protests that this was not what I needed. After a night there they realised it was not a mental health problem and they started to look at whether my drink had been spiked at the party. I was sent to a neurology department of another hospital and they decided it was Encephalitis, and treated me for that. I woke up in hospital being given antibiotics, not knowing where I was and being completely confused as to why I was there. I slowly began to feel normal, with mornings and evenings being the worst for feeling as I called it 'dreamy'. I also suffered slight amnesia. I recovered and was fine.
Then about 2 months later it happened again. Again I was sent to hospital, they did all sorts of tests, EEG's, Lumbar punctures, CT scans, MRI scans, numerous blood tests, which all came out normal. Again I fully recovered and was allowed home. This continued for over a year. After a few times my parents decided it was unnecessary to go into hospital. My consultant decided it might be a rare kind of epilepsy and prescribed me anti-convulsant drugs which seemed to start to prolong the gaps in between but was not stopping them. By this point I was able to control my behaviour somewhat and was not swinging from curtain rails and being verbally abusive to people (as I had been in hospital). I also craved take away food during all my episodes, particularly pizzas and chinese food and was adamant this is what I must have, my appetite also increased. I also experience times where I need to predict what is going to happen next, which is why I would watch the same programmes over and over again (in my case Friends), as if I predicted something and got it wrong it made me feel more confused/dreamy, so by watching something that I was familiar with would enable me to feel more 'normal'.
During the times I was well I was completely back to normal, and we had noticed a pattern to them that it was when I had had a busy week, stressed, not got enough sleep and had been out drinking. However as the years went on my episodes got further apart and in what should have been the most stressful time of my life, my uni finals, I was well throughout all of my 3rd year - despite partying a lot, not getting loads of sleep and having loads of uni work to do. At this point I was well for almost 2 years! I thought it had stopped but after graduating I started a new job and within a fortnight of being there I was getting ill again. By this point I could judge when it was going to happen, as about a week before I got really tired and went into an episode I would feel the stranged confused feeling in the morning, maybe only for 10 minutes but day by day it would last longer until I had to give into it. I would play mind-games with myself saying I'm not getting ill and I could go about my daily duties until I had to say to myself 'yes I am getting ill' and all of a sudden by the next morning I would be fully into an episode!
I had also seen 3 consultants by now (2002) and the last one in London said he did not feel it was epilepsy and said I could come off the drugs. I moved to York and then Bristol and then back home to North Yorkshire where I got ill again and so was referred to a consultant in York. She decided it was psychological despite by now having self-diagnosed it as KLS, and having spoken to various people who had suffered it, I was convinced that this was what I had. I had also heard of a consultant in Bristol (whom I didn't see when I was there!) who had diagnosed people with it before and so thought if I go to him and he tells me it is not KLS I will believe him as he has seen it before. I went and he said it was a classic case. There are no cures for it and no treatments that work on everyone but he has given me 2 to try when in an episode. Since then I have been ill 4 times - twice with only a month gap between them in 2006 - the shortest gap ever and then again in Feb 2008 and now in January 2010. I know that this may not be the last. It is so hard to describe and I only feel like I am being understood when talking to someone who also has it which is why I have contributed here as I know how important it is not to feel alone and like you are the only one.
Since I have written this I have tried various medications and become more informed on it, I believe now that any medication I have taken that appeared to prolong the gaps between them did not actually have that effect and these gaps would have been the same whether or not I had been on medication. If it helps people psychosomatically to take medication then by all means do that, however I do not believe meds helped me in anyway, I just tried to find a pattern that wasn't there just to try and gain some control over this unpredictable syndrome.
I have also tried Modafinil/Provigil to see if it would stem an episode before it started but this just kept me awake when all I wanted to do is sleep. My last two episodes have been longer than they used to be - 3 and 4 weeks respectively and although have felt a bit lighter/ not sleeping as much as previous ones they haven't ended as abruptly as they used to and although I am up and about around the house and trying to get out and about I still have the dream-like feeling and tiredness and cannot get back into my normal routine. I experience headaches during episodes and also a feeling like my brain is really 'busy' and also swollen. I also get quite upset/depressed which has just been something the past few times I have had it as although your family and friends are there for support it feels quite lonely.
Nathalie Hoyland's story was in the Daily Mail, 16 February 2011. Link here.
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