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

Hello, hello!

Tasmania, Australia. (the little island at the bottom, which has the fast-fading Tasmanian Devil populations). I’m interested to know where other people are from too.

My name is Sharon and I live in Sacramento, California.  After seeing an episode of “Mystery Diagnosis”, and looking up the disorder on the internet, I realized that I definitely have KLS. After years of confusing intreractions with the mental health community (I have been diagnosed with all of the major mental disorders), I realize that KLS accounts for all of the symptoms.  I am completely thankful to finally find an answer.  It also explains why most of the medications I have been given haven’t particularly worked.  My latest psychiatrist is a Kaiser doctor, whose assistant responded to my inquiries with “I’ve never heard of it.”  That was several days ago and I haven’t heard anything at all.  I need to learn how to talk to the medical community.  The large symptom of sleeping has been dismissed as atypical depression.

I am having trouble with flushing and chills, does anyone else have this symptom?  Is there anything that I can do to help regulate my body’s temperature?

Also, one of the members on her blog, mentioned “the prediction thing” as an unusual symptom.  I also experience this symptom.  For me, the prediction thing occurs often and is part of a confusing and larger experience.  Since reporting this experience to dr.s has ended with my being accused of “magical thinking”, I am careful not to discuss this.  Otherwise, my symptoms include long periods of sleep, confusion, compulsive eating, unexplainable sexual behavior (earlier in my life) and so on.

After being symptom free (and medication and dr. free) for approximately 11 years, I experienced a deep reoccurrence.  Although I am no longer in the “depths”, I still have light episodes.  It is amazing to read about other persons experiencing the kinds of things I have experienced.  At one point, I told a therapist that I could not touch my things (meaning possessions, etc.) and being given the blankest look.  I also reported feeling as though I was invisible…which of course meant more awful medication.  I finally decided to quit taking all of unhelpful medications and am currently taking only 100 mg. of Zoloft.  I tried to go off of it, but I felt terrible with pounding in my ears, so I continue to take it.  Ritalin, adderal and dexedrine helped with the sleepiness, but not the compulsive eating which is a miserable symptom.

Hi, my name is Donna and I am from Orlando, Florida.  I am not officially diagnosed, but also related to the symptoms of the young lady on Mystery Diagnosis, seen on Apr. 29th.

We’re in California…more specifically, Los Banos.

Yes, I live in the toilets :(

Hi, I am Evan (42yo male) from Perth, Australia.  I have been having episodes for about 16 years, with official diagnosis about 8 years ago.  So far my longest “eposode free” duration has been 4 years, with my latest episode commencing June 17th this year.  When I finally came “out of it” (my episodes last about a month) I was horrified to find out I have been charged with disorderly conduct and am now facing a court appearance!!  It would be nice o talk to others with this illness, I feel that I have been so alone for so long…........

Hi im Sarah and im from penzance in cornwall england i cirrently stand as the only person with kls in cornwall i have been suffering from episodes for the past year now and have provisionally been diognosed recently.I am very nervess to be alone for a long period of time as i get frightened i am going to have an episode,its harder to be on my own as i can not speak during an episode.I am not really sure what happens to me as when i am asked what happened or where i was i can not remember.So i am greatful to my doctor who advised me to join this site as i now know that there are other people who suffer from kls and i do not have to feel alone and i now know that there are others out there who i can relate to.
Sarah

My name is Asher, age 40 and live in Israel. Just recently diagosed with KLS (have had 19 years of episodes).

My husband has KLS, and we’re in Victoria, Australia:)

Hi. Im 27 a mum and i have KLS.  From Australia, Victoria.
i was diagnosed at the age of 24 i think.
i sleep for up to 6/7 days and have to be woken to eat drink and toilet.
my family are my life saviors, as i have a 7 year old and im a single mum..’
so when i have an episode my family look after my daughter..
it would be great to hear from anyone in Australia that has KLS or anyone for that matters.
take care everyone

HELLO!!  My 17 year old son was recently diagnosed with KLS after almost eight years.  We live in Missoula, Montana.

hello my name rockymeet i m 28 years old form Delhi (India) i like it forum site so keep rocking :).i thing we will share more type of topic in this forum site and share our knowledge

Hello everyone,my name is Kevin,I’m 29yo,I live on the south shore of Long Island,New York.I’ve been suffering from KLS for about five years now.I joined the KLS Foundation to meet people who also suffer with this “illness”.Most people I talk to dont believe me when I tell them I can sleep for up to twenty hours a day,sometimes straigh through for two days!I hope evryone is doing well :)

Stacey Maltz here from Manchester, Connecticut, USA!!!  Newly diagnosed at 29 yrs old and searching for 4 yrs for an answer.

Hi, my name is Lori from Everett, Washington and I think I’ve had KLS for about 6 years.  I’m 44 years old and a single mom.  It’s affected me negatively in so many ways, not being there for my kids, keeping the house clean, promotions at work and financially for missing work.  I’ve gained so much weight (mostly from a cluster of episodes 6 years ago, the onset and a cluster of them that is just ending) that I haven’t dated in all of these years.  I’ve finally just been diagnoised with KLS which is a step in the right direction.  At least I know what it is.  Trying Ridilin now but not giving me energy.

My 17 year old son has just been given the diagonsis of KLS . We live in Mountain Top , Pa.
He started having episodes in janurary of 2010 . he had MONO along with his first episode. His sleep cycle is every 6 weeks . He sleeps 20 hours a day for 7 to 10 days and starts to come out of it. I am concerned with this up coming school year. He had missed 56 days of school last year. He will be a senior this year.
Ann Jones
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p.s Any information on how other schools have helped with this condition would be greatly appreciated.