KLS Foundation Discussion Forum

Anyone from London or the UK please?

2010-03-01T02:50:20Z

Hi my daughter’s condition has baffled several GPs and consultants in two specialities - though it’s been confounded by uncovering iron overload while tests were being done. That’s genetic (haem- or hemochromatosis) and until recently thought not to affect young women, so the poor girl is already feeling she’s a freak. Is anyone else here from the UK (other than Simon)? If so, any ideas or suggestions please about how to convince our doctors of our home-diagnosis of KLS? Or where to find a doctor who actually knows something about it? I have the impression that ours are starting to think she has a psychiatric disorder - they are certainly nudging us in that direction now that “it’s post-viral” seems to have been worn out, after 5 or 6 episodes. And if I keep taking her along to new doctors with this mysterious sleeping illness - which she can’t remember anything about, once she’s properly awake - I shall be accused of Munchausen’s by proxy any day now! Thanks, Gill

Communication with friends vs. family

2010-03-07T21:50:58Z

My son who is 15 has been in an episode that is different from the past two he has had. While he is more awake more, he is completely nonresponsive. He can’t stand to have anyone sit near him. He has extreme food cravings for which he is very demanding, wanting specific junk food. He refuses to verbalize other than when he is asking for food. However, he has two friends come over and he changed dramatically and was conversant with them. Can anyone explain this?

Simon 29 from england

2009-06-26T13:22:01Z

Hi everyone, just a quick hello to everyone on the site:) my name is Simon im 29 and im from England, I was diagnosed with KLS in Oct last year.
Im currently in a 9 months long episode with varying states of conciousness. Will beat this off in the end tho!:)

Hope everyone is well and episode free!

Where Are You From?

2008-04-26T09:34:47Z

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

My 17 year old son was recently diagnosed with KLS

2010-03-02T21:14:02Z

Hello,
My 17 year old son was recently diagnosed with KLS . He has actually had it for 8 years now, so this has been a long, difficult journey for us. For years, his doctors thought it was depression, but he didn’t respond to numerous anti-depressants. Finally, I was the one who requested a sleep study , and it showed some abnormalities. They then repeated the polysomnogram, followed by an MSLT test . He went into REM sleep on three of five tests, and his average sleep latency was 4.3 minutes so he was given a diagnosis of narcolepsy based on his MSLT test. We thought we had finally found an answer, although I never felt that narcolepsy symptoms fit him. He was treated with NUMEROUS stimulant medications, but my son kept saying he maybe felt a little more awake, but he didn’t feel any better. His sleep medicine doctor, whom I adore, kept saying,” we’re missing something here, there’s something else going on”. My son actually got worse, and went into what ended up being a five month episode!! In August last year, I heard the words Kleine-Levin syndrome for the first time. His doctor gave me a 17 page article to read on KLS. I was shocked, and terrified when I read it because I knew I was reading about MY OWN SON!! We ended up taking him to Mayo Clinic , Rochester, more or less to get another opinion, and after two visits, he did get a diagnosis of Kleine-Levin syndrome. I really have to give the credit to my son’s doctor here in Missoula, Montana. He has been amazing, and I truely don’t know where we’d be without him.

Sean

2010-02-25T19:55:11Z

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.

Hi! We’ve self-diagnosed my husband:)

2010-02-10T17:36:51Z

Okay, so yesterday, after reading the article about the “Sleeping Beauty” in the UK and doing some internet research, we’ve realized that my husband has KLS. We’re so excited to finally have a name for it! He had his first episode when he was 15 after a bout of bronchitis, and the following episodes were pretty intense and frequent. Since we met in 2003, he’s had at least one or two a year, lasting for 7-10 days. He’s 33 now, and had his last episode a few months ago (when he was 32). His episodes are usually triggered by a lack of proper sleep, stress, or both. While he’s been physically present for some pretty major events, he’s missed so much because of this (including the birth of one of our sons).

Obviously, when he first tried to explain it to me, I just didn’t get it. Over time, I’ve come to understand what he’s going through a little better, although having to explain to his employers why he couldn’t make it in to work for a week has never been easy for me. (I probably did more harm than good, actually.) Now that we know what it is, it will be so much easier to explain to people, and if nothing else just to say, “He has KLS. It’s hard to explain. Google it.” I’ve gotten a recommendation for a doctor nearby who might be able to diagnose him, but I’m expecting it to be pretty expensive. And at the end of the day, if there’s nothing they’ll be able to do to treat it, it might not be worth it to pursue it anyway.

So yeah, that’s us:) I’m sure my husband will be around the forums soon!

Northwest Ohio Mom, 42, been sleeping 2/3rds of my life away since the late 80s!

2010-02-06T22:03:34Z

Hi. My name is Lori. I am 42. I live in Ohio. When I was a teenager, I started sleeping like crazy. I mean all of the time and missing a lot of school. That was in the 80s. My doctor said I had mono. I never really got over it. About five or so years later, another doctor said I had Chronic Fatigue Syndrome. In around 2002, a doctor at the Cleveland Clinic said I also have Fibromyalgia.

I have been to rheumatologists, pain management doctors, neurologists, nephrologists, urologist, ENT doctors, psychiatrists, psychologists, therapists and many other doctors and I have been my need for days and weeks of sleep (boughts of it that affects more than 2/3rds of my life) is related to Fibromyalgia and Chronic Fatigue.

After working since the 90s in a professional career, I had to stop working because I could not get out of bed. These boughts of sleep are often accompanied by sore throat, swollen and/or painful lymph nodes, headache and vision changes.

I know nothing about this syndrome. I saw the information on the Today Show and here I am, ready to learn.

Thank goodness my husband tries to understand that I am always sleeping. He has a professional job, cares for the kids nd our house, cooks, cleans, does the grocery shopping and everything else. He is exhausted, yet I still cannot stay awake. I try, and when I do, I am miserable: mean, out-of-it, upset, in a fog and just not with it at all.

I am missing my life. Now even sleep hurts. My hips, pelvis, neck, back and shoulders hurt terribly from sleeping so much. I have intense swelling that lasix won’t touch. Pain medication does nothing except give me hives.

Some people just think I am lazy or crazy or a combination of both. I know that is untrue. I need sleep like normal people need air. A nap for me is two days. I Can barely drag myself out of bed to drive my son to school. The school is a couple miles away. My husband gets him ready and gives him his breakfast. I then get out of bed in my pajamas and drive him to school and can barely walk up the steps to my bed. I then sleep from 8:30 a.m. until the next morning at 8:10 a.m. And there are many times when my husband has to take my son because I just cannot get up. On weekend I sleep nearly the whole weekend.

Doctors say it is also depression. I think it is a vicious cycle. My body has to have all this sleep. Then when I sleep I feel guilty and angry at myself for not being able to be awake, and then that depresses me. It isn’t the depression making me sleep..it is the sleepiness that is making me depressed.

I am too tired to see friends and family. My life is sheer hell and my kids and husband are miserable. I only get sort breaks from my sleep state. I force myself to go grocery shiopping once a week with my husband. I can barely stand the 45 minutes it takes us and I need the cart to steady myself. I then come home and sleep.

I have tried Savella, Cymbalta, Lyrica, Lamictal and other meds to help with the symptoms, but they all make me gain weight and swell. Right now my weight has ballooned by 30 pounds and I am swollen and in pain.

I apologize for not having read the site before posting. I will read it. It takes me awhile because I sleep so much. When I am awake I try to be uber productive because I never know when I am going to be paralyzed with fatigue.

Does anyone know if there are any doctors in NW Ohio or anywhere within a couple of states that treats this? Is what I have this syndrome? I am currently receiving disability through ny former employer; however they categorized my disability as a mental nervous disorder and I don’t believe that is what it is. This is a physical malady.

I recall dating a guy in the 90s and he used to complain all of the time about me being lazy because I needed to sleep so much. The more I exerted myself, the more I drove myself into sleeping boughts. I knew nothing of Chronic Fatigue Syndrome or Fibromyalgia back then. I believed what he said about me and I felt terrible. Thank goodness he and I didn’t get married, as we had planned, what an awful life that would have been with getting scorned and put down all of the time for something I had no control over.

Thank you for letting me share my experiences. I look forward to reading about yours.

P.S. I have thin skin. Please be gentle.
Thanks. Lori

Adult KLS

2009-11-10T10:15:23Z

Is there anyone who subscribes who may have been diagnosed late teen to adult or anyone who has had KLS for a really long time; 20 plus years? Are there any older people with KLS; 30, 40, 50 plus?

12 years

2010-01-04T16:27:33Z

My KLS started when I was ten or so I am 22 now. When I was 14 I was diagnosed with OCD. I am currently battling both while raising my five nieces and my four year old brother. They are all home schooled. My name is Raven Lyric, just had it officially changed. I live in Tennessee but was born in Texas and raised on the move in Europe and north America.