KLS Foundation Discussion Forum

undiagnosed new zealander.

2012-01-05T08:41:32-08:00

hi everyone,my names terri and for a long time iv been looking up human hibernation not knowing of kls.for me my episodes happen in the winter so i thought im either a bear or have seasonal afective disorder.the first time it happened i was single ,living alone so it was great.it was a 3 month session,friends mowed my lawn and walked my dog and i just slept,waking only to eat toast and go to the tiolet about every 2 days.my friends thought i was dying because for a slimly built woman i am a powerhouse of strength and energy,working hard out on weedeaters or chainsaws and leaving the boys for dead.my dear friends say good bye to me in autum,break into the house to check im breathing and know when the spring lambs start jumping that il be awake soon.i have a child now.oh boy this makes thing hard.i wake to take her to school at 830,by 9 im asleep again.i wake to pick her up though i sit there for a wee bit really angry that i have to wake and may sit for 15 mins wondering why im awake before i realize i need to pick my girl up from school!!!we come home,i cook dinner in a daze,we eat and then we sleep.i end up getting about 18 hours a day.i hate having to wake,its like i cant put two thoughts together.it takes soooooooooo much energy just to sit up or move my arms or legs.people visit and i dont remember.i guess i just dont want to feel alone in this anymore.hahhahhahahaha so hey is this normal?

Where Are You From?

2008-04-26T09:34:47-08:00

My name’s Alanna. I suffer from KLS and have had it for 5-6 years. I live in Seattle, Washington!

Not officially diagnosed

2011-10-15T16:33:15-08:00

My son has not been “officially” diagnosed with KLS, but judging by his episodes and all of the history I have read of this syndrome, I am sure he has it. Should I be worried that we do not have an official diagnosis? Also, I have read some posts about growth spurts related to KLS, but they seem few and far between or maybe I missed them. Strangely enough, after every episode my son has had since October 2009, his feet have grown so much that we have had to buy him shoes another half size larger. Has anyone seen growth such as this as well?

Thanks

From Argentina

2011-10-13T18:39:19-08:00

Hello, I’m from Argentina, I have a child 18 years after 18 months was diagnosed. He had 7 episodes the first year and is now the sixth. The episodes last from 6 to 16 days and the longest period of welfare was 83 days. Modafinil was tested, he takes the dream but not back to reality. Sorry for my English.

Steve from New Zealand

2011-08-15T02:11:09-08:00

Hi everyone,

My name is Steve I live in Wellington New Zealand and have KLS. My younger brother also has KLS but lives in Australia. I am 34 I live with my partner Kylie and have two beautiful children aged 11 and 7
I have suffered from KLS since the age of 14 and had been episode free for nearly 2 years until very recently when I had another. I am very keen to talk to others having gone undiagnosed for so long and having no medical support has been very difficult to cope with at times for both my family and I, Look forward to discussing how KLS has been for you and keeping informed of the latest news. I have watched the conference videos and would have loved to have been there, but these videos are the next best thing. Thank for a very informative site.

KLS Son in Kentucky

2011-07-25T07:54:20-08:00

Our story is like so many others. Our son had the flu like symptoms then slept for another 8 weeks during his first episode. His second episode he was initially diagnosed with a viral encephalitis. When we repeatedly had to return to the hospital we went from a diagnosis of severe depression to a possible brain tumor back to depression or our son being catatonic. Unfortunately for the neurologists they couldn’t explain his abnormal EEG tests. We were fortunate that our primary care physician realized that this was beyond both her and the hospital neurologists expertise. She helped us set up a second opinion in another city. That gave us the answer we were looking for - the correct diagnosis of KLS.

We are continuing on with our lives as normally as possible. Our son is fortunate in that he seems to have an episode once every two years. The episodes he does have lasts for months. The first episode (age 16) lasted 8-10 weeks. The last episode began in January and he wasn’t fully well until mid April. He has finished his first year of college but will he be able to find work as an adult. I’m not sure if this is considered a disability or not. Can anyone advise us on how to handle the transition form childhood into adulthood?

Thanks to all and good luck as you carry on with this illness.

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2011-06-25T03:00:24-08:00

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32-year-old woman with KLS

2011-05-03T09:07:17-08:00

Youth:

Ever since I was a kid, I was a very hard sleeper and hard to wake up in the morning. My parents told me once I fell in the gap between my bed and the wall and continued sleeping there until they looked for me. I have slept through explosions that woke up the whole neighbourhood.

Other medical details:

- Severe sleep apnoea: had no apnoea during a sleep study at age 29, but severe apnoea found at age 32. Now treated with CPAP machine.
- ADHD-PI, very similar to “sluggish cognitive tempo” described in earlier DSMs.
- Occasional depression
- BMI: 28
- BMI prime: 1.12

Current medications:

- 15 mg Dexedrine SR (morning), then a 5 mg at noon, another 5 mg at 3pm, another 5 mg at 6pm
- Wellbutrin XL 300 mg (morning)
- 40 mg Celexa (evening)
- 3 mg melatonin (evening)

I wish I didn’t need as many meds, but whenever I try to reduce one of them, bad things happen.

Manifestation:

- Spaced out during the day and night. Need to force my body into circadian rhythm with strict wake-up and bed times, otherwise my natural tendency is completely random, waking up and sleeping at random times every day.
- About once a month, I sleep up to 36 h in a row.
- Because of my intelligence and talent, I have an excellent career and work Mon to Fri, but sadly I miss approximately 20% of work because of sleep/incapacitated days. I am lucky my current employer is happy to comply with labour and human rights laws to accommodate my disability, but past employers have not been so understanding of my need to take sporadic days off (have been laid off), and there is always a risk that my disability can be seen as a liability to my current employer despite my excellent quality of work on the days I am healthy. Difficult to plan meetings.
- When I’m healthy, I’m super-focused and on the ball. I accomplish many things with efficiency, not unlike a hypomanic state.
- When I’m unhealthy, I’m spaced out in fuzzy thought, confused, paralyzed by trying to make basic decisions, have extreme difficulty coordinating simple physical events like meal preparation or self-care. I fall in and out of sleep.
- If a friend or lover is trying to wake me up in the morning when my disability takes control of me, I stubbornly and vehemently refuse. I yell at them or lash out if they try too persistently to get me up. When I finally wake up on my own, for example in the afternoon after 10 to 18 hours of sleep, I have absolutely no recollection of any of the events that took place in the morning and am upset that I was unable to get up at the time I intended, even with the help of a friend and having gone to bed early the night before.
- Sweet tooth. When presented with a box of cookies, before I even realize what happened, I’ve finished the box.
- I’ve never had any of the sexual appetite symptoms often described of KLS. Instead I have an insatiable appetite for knowledge of intangible things. I spend every waking moment reading encyclopedias, trying to understand life, epistemological and ontological questions, stuck in deep fuzzy thinking.
- Some autism-like traits, e.g. alien-like difficulty understanding humans and what is socially appropriate, despite a deep love for humans. Compensate by analyzing and studying all cultures almost as an anthropologist would, to effectively communicate and follow all apparently arbitrary but culturally important norms and assumptions and expectations.
- Require sensation of heavy blankets to sleep.
- Difficulty differentiating wetness from ordinary dryness. When something is very dry, e.g. disposable wooden chopsticks, the sensation is unbearable.
- I feel completely comfortable without a jacket at temperatures of 4 to 10 C (40 to 50 F). If I put a jacket on at this temperature, I often feel too hot and sweaty, and end up removing it and holding it over my arm.
- Some fabrics, e.g. polyester, wool, are so itchy and unbearable. Cotton almost always good.
- If I don’t eat small portions of food frequently, I get very irritable.

Lifestyle management:

- Strictly avoid alcohol, cannabis, etc. (Before I began treatment with Dexedrine and Wellbutrin, cannabis was how I self-medicated, and I must say it did help me accomplish a lot of things on the occasional times I used it back then.)
- Wake up 1 hour before sunrise every day, setting a pace for the day by staying one step ahead of things all day.
- Meal planning so I always have something healthy to eat available (bulk meal preparation and freezing on weekend)
- Go to gym twice a week makes immense difference, but if I fall off the habit, it’s extremely hard to get back on it, because hard to go to gym when feeling spaced out and weak
- Music helps immensely. I put headphones on at work or when doing house chores. Gives my brain something to keep it busy and entertained for its need of stimulation, and frees up my body to do the work it needs to do.

KLS at 40 year of age.

2010-02-25T19:55:11-08:00

My name is Sean and I was diagnosed with KLS about 7 months ago. I just turned 40 years old last December. I have been suffering from this condition since I was 15 to 16 years old. I was married for 16 years and have 3 beautiful kids. Through all of this my marriage has failed and I live somewhat of a unstable life. Being 40 years old and having KLS is extremely difficult. Just trying to hold down a job but also trying to help people that are in your daily life understand what you are going through. I have had a long haul of experiences with people accusing me of being everything from an alcoholic, drug addict or just lazy. If it was at all possible I would like to some day share my experiences on a nation-wide if not world-wide network like the media to possibly help others suffering from KLS. I have been on many different medications from many different doctors who couldn’t figure out my condition and I was continuously misdiagnosed. Most recently I’m taking Ritalin and I’m not sure if it is working.

I just woke up from a 2 week episode today. It is terrifying not knowing if your job is still there, the extra added pressure that I put on fellow employees who have to cover for me.

I really need help and I hope by writing this information about myself that someone might read this and have some answers to help me find a cure or at least some type of medication that will slow down or totally eliminate these episodes.

Greetings from New Zealand

2011-04-05T23:14:41-08:00

:-) Hi, Im Robyn. I am a Kiwi. After 2 years of searching for answers my 14 (nearly 15 ) year old son has just been diagnosed with KLS. He has only had two episodes that I am aware of over the last 2 years. The first lasting approximately 6 months and the episode he is now in which has been with him for approximately 9 months. At one stage of this episode he was sleeping 16-19 hours. However currently he is only sleeping about 12 hours but is pretty much in a daze when he is awake. He comes out of this daze about 4-5pm and is at his best for a few hours before he goes to bed again. The first episode was really scary because we couldnt wake him at all no matter what we did. This episode he can be roused but just cant function. I guess you could say that even though he is walking and talking he really is still asleep. Regards to everyone.