KLS Foundation Discussion Forum

Any History of Alcohol Allergy in KLS Family?

2008-05-09T20:30:56Z

Do any of the KLS reporters have a history of alcohol allergy in their family? My maternal grandmother was massively allergic to alcohol - both externally and internally. Even one swallow of alcohol would bring on bizaar behavior and physical collapse. If she came into contact with alcohol, she developed an extreme rash and blisters. As a psychiatrict nurse, she was forced to change specialties when Thorazine was introduced because of an allergic reaction to the medication. Has any KLS reporter developed anaphylactic shock in response to an alergic reaction?

weather change

2007-11-28T13:51:16Z

does anyone with kls sleep pattern affected by the weather?

Happy Mother’s Day

2008-05-11T16:09:00Z

Just a quick note to wish all you Moms a wonderful Mother’s Day. Hopefully you are all being spoiled and pampered and enjoying YOUR day!

XOXO
Jillian

How long have you been episode free ?

2007-08-16T11:20:53Z

I have been episode free for 9 years.

Nicolas

Dreams, Visions and Hallucinations

2008-05-09T19:35:47Z

Have any of the KLS reporters experienced visions or hallucinations? Does any reporter keep a dream log? Has any reporter been hypnotized and if so, what was the result? My own experience during episodes has included odd communications and visions. Fortunately, my mantra is “don’t panic”.

Introduction

2008-05-10T12:54:18Z

Hi! How is everyone?

I’m Sunshine4tullip. I’m 37. I’ve had KLS for, maybe 26 years. Since I was 11 or 12. I was diagnosed in 2005. Before that, we just assumed it was some Mystery Illness.

DURING EPISODES: It impairs my thinking greatly. It also effects my speech, balance, motor skills. Sometimes I sleep A LOT. It’s VERY hard to wake up. Sometimes I’ll walk through days in a sleepy state, where I’m awake,but it FEELS like I’m asleep. Other times I can not get to sleep. There are times when I am ravenously hungry. My stomache hurts badly because I ate so much,.... but, funny, I am still hungry.

During episodes of KLS, strangers have assumed I was either very drunk, on drugs, severely mentally disabled, or all three. (i know this because sometimes the occaisonal rude person will comment or stare. Mercifully, most of the time I don’t percieve it...but, if people are mean-spirited, that’s THIER problem.

You have to feel sorry for people with no sense of humor, right? How FUN can thier life be, with no compassion or humor?! They must be bored out of thier minds!

NOT during episodes of KLS: I am...’normal’, for lack of a better word.

When I am well, I enjoy painting, working out, good movies and books, spending time with friends & family. I sell the occaisional painting. Once in a blue moon, since KLS has gotten so much worse. I am on dissability. My mom and I are best friends. She takes care of me when I need help. I’m Christian, and I find great comfort and friendship in God. I LOVE BIRDWATCHING and nature !

THIS PHOTO is ME and MY MOM, BFF (best friends forever!!!!)

Nothing else to say about me I guess. Nice to meet you all !

Love,
Sunshine4tullip

Low Dose Naltrexone, Revia

2008-05-10T11:17:31Z

Hi!

Has anyone tried Low Dose Naltrexone, or Revia ? I am considering it. It was on a Kliene Levin survey I took, (as a ‘have you ever tried any of the following’ list) .It was a drug I have not tried yet.

I cut and pasted this from Web MD:

“Naltrexone belongs to a class of drugs known as opiate antagonists. It works in the brain to prevent opiate effects (e.g., feelings of well-being, pain relief). It also decreases the desire to take opiates.”

ps, I do NOT have an opiate addiction...I only have Kleine Levin, asthma, restless leg syndrome, and orthostatic intolerence.

Love,
Sunshine4tullip

Help!

2007-11-23T04:37:30Z

Hi I am Lynn. Can anyone help me. My daughter has been suffering from KLS since Nov 2001, when she was 14 yrs old, but wasn’t diagnosed until May 2006. She suffered 15 episodes each lasting 10 days between Nov 2001 - May 2003. Since then she has suffered 5 but they are all longer between 16 - 32 days each episode. She is currently in an episode so far 39 days which is the longest ever, and finding it very difficult to clear. It is devastating to watch her suffer. The tiredness wore off after day 10 - 12 but the derealization has been with her 24/7 since day one. Every time she gets close she gets upset and cries as she can’t take the ureal feeling anymore. This then sets her back and the unreal feeling becomes stronger again. Please someone help me to clear this for her. From her desparate mum in the UK.

hi--we’re new here

2008-05-04T17:05:39Z

Hi
My 12 year old son was just diagnosed with KLS. He has had I’m guessing about 4 cycles in the past 12 weeks. They seem to be 5-6 days of hibernation followed by 4-5 days of him being his wonderful self. No mediciations are working yet (I’ve given this kid so much Adderoll per my doctor that I’m stunned that he sleeps--he should be clinging to the ceilings or keeled over from a heart attack). Josh hasn’t been in school in 15 weeks (2-3 of that was getting over a stage 3 concussion) and he can’t play ice hockey (his one true passion) . This has been a nightmare. What are we in store for next? We live outside of Philadelphia.....are there any others like us in this area?

My Intro

2008-05-03T18:11:27Z

Hi people! From what I’ve read so far, you all sound like a wonderful group of compassionate and giving people. I am so glad to have found where my “fellow-sufferers” can be reached. I am in my 50’s, have complained of chronic fatigue since approx. 1990 (age 35-52). Since Oct. 2006, I haven’t worked for reasons related to my condition. It is then that I noticed that my condition presented itself in cycles of 2-3 weeks each episode, as opposed to barely being able to function when I worked, and then coming home and being able to do absolutely nothing but lie in bed, do laundry about every 3 weeks. I recently had sudden hormonal changes since not working, don’t know if that could be related. Also, I am a nurse, and have been exposed to many microorganisms in my line of work, I also visited many patients in their homes and was exposed there as well. Since starting to see a psychiatrist, 5 years ago, I have had many med. changes. I would be happy to share my story in more detail, if anyone is curious to know which meds I took and their affects or causes of hormone imbalance, etc.
Hopefully, by sharing we may discover a commonality amongst us all, that can lead to a better understanding of the cause. I applaud all who have worked so hard to create this site, and those who continue to pour their hearts out to help others as well as themselves.
Thank you,
Donna