KLS Foundation Discussion Forum

Sleep Episodes

2010-08-31T05:02:19Z

Hello .
Can someone tell me their sleep cycles ? My sons are every 5 to 6 weeks. He has recently been diagonsed KLS in Jan. of 2010
Thanks Ann

KLS on Health Discovery Channel’s “Mystery ER” on August 8th and 9th

2008-07-25T15:26:56Z

Be sure to watch the dramatization of the real-life story of one of our KLS families who live in Simi Valley, near Los Angeles, CA. It will feature Brian and his mom, Cindy who is a nurse. It will air on Aug 8 at 10 p.m.(EST) and Aug 9 at 1 a.m. (EST). Check your local listings for when it airs
in your area. IMPORTANT NOTE!!!!!!! Brian Kime has a pre-existing condition regarding low blood pressure. Please be sure to know that low blood pressure IS NOT an ailment of KLS!!!

I’m a 44 year old single mother of two. It’s not easy finding information on Adults with KLS

2010-08-10T21:23:23Z

I’ve watched many videos on KLS, YouTube, here and read many articles but they are all on teens. I need more info on adults. This disorder has taken so much of my life away. I’m depressed most of the time during episodes that can last months (not every day but most days) and I’m not there for my kids, I’m broke and almost at bankruptcy and am gaining so much weight I don’t want anyone to see me. I’m coming to the end of intermittent episodes that have been going on since February and now it’s August. I need my life back. Why isn’t there more info on adults?

Not quite an episode!!

2008-12-23T06:36:30Z

I am in a bit of a haze at the moment but don’t know whether I am ill or not, it is sort of lurking!

I felt funny Monday 8th Dec in the morning and then ok a bit later so had lots of early nights last week and still had a little bit of a funny feeling but not as much as earlier in the week. Then saturday 13th had a big family gathering, so drinking wine, and a late night so had an early night on sunday and felt funny on monday morning but that eased off as the day went on. Tuesday 16th felt a little weird but not as much as monday in the morning and then ok on the evening and later in the week I felt a little funny, but more tired! Had a night where I couldn’t sleep properly for worrying!

Since then it has been coming in waves and felt really bad when I was in the supermarket on saturday and had to get home but then sunday was a bit funny on the morning and then fine later on! Still lurking now as feeling a bit funny but still in work!

Not sure what is going on, as it normally would have got progressively worse - but it cannot seem to make up it’s mind! Really hope it is not an episode as I have (fingers crossed, touch wood etc etc) never been ill at Christmas!

Anybody else get this?!It is the most random it has ever been and not just decided to get on with enjoying the christmas period and not let it get on top of me! Stupid KLS!

Nat
xxx

BEFORE GETTING A DIAGNOSIS OF KLS, WERE ANY OF YOU MISDIAGNOSED AND IF SO, WITH WHICH DIAGNOSIS?

2008-05-03T18:32:57Z

I have been under the impression that I only had chronic fatigue and depression for many years. I just self-diagnosed myself less than 1 week ago with the KLS. Of course, until I went to a psychiatrist, my F.P.M.D. would say, “you just need to exercise more”. That seemed difficult when your muscles are actually weak from lying in bed so much. I have recently been making an attempt to lift light weights to build up my strength, during my remissions. I got validated more when I sought out a Psychiatrist for help. Now I would like to progress to a physician in my area or state, who is knowledgeable in this new KLS diagnosis? Where on this website can I find such information. Thanks! Donna

Advocate for KLS

2007-08-16T20:40:15Z

HI,

My name is Shari and my daughter is having difficulty with her SSI. We were told to file an appeal, which we did. But now I am wondering if there is anyone out there who has had a similar situation and if they had or know of anyone who is an Advocate for KLS to help represent us in the process. If she loses her medical coverage she can not afford to get her medication. If she doesn’t have her medication she is more likely to have more severe and more frequent episodes. We would like to prevent this from happening. If there is an Advocate for KLS out there please let us know.

Thanks and have a great day,
Shari

Sleepwakling / bathing

2008-05-21T12:48:26Z

Ack! Help! My heart has been in my stomach since this morning.

I got Tyler up for school this morning. Mind you, his room is upstairs and he has a loft bed. There are two ways to get down from his bed. 1. Jump 2. There is a slide coming off of it that he can slide down. (Yes, he’s got a really fun bed)

So we’re eating breakfast and he said, “Mom, I woke up in the tubby (Bath) in the middle of the night!” I said, “You had a dream about taking a bath?” He tells me, “No, I woke up in the tubby with the water on!” I said, “You’re clothes aren’t wet. You must have been dreaming.” He tells me when he woke up and realized that he was in the tubby and it was the middle of the night he got out, dried off, put his jammies back on and went back to bed. I wrote it off, again, to another vivid dream.

After I took him to school, I went upstairs to do some cleaning. Sure enough, the bathtub was full of lukewarm water and there was a wet towel on the floor.

My heart did a hop, skip and a jump into my stomach where it ran in circles for the next few hours. What if he had a seizure in the tub? What if he drowned? What if he fell off his bed? I can’t put a lock on the bathroom door because there are times when he has to get up and go potty at night and I would hate for him to have to run downstairs (Risking a fall down the stairs) to go potty in the half bath downstairs. Do I put a babygate along the tub blocking his access?

These last few days he has been very sleepy and I think he’s going to start an episode soon. I am trying to push him one more day as he is out of school for the summer after tomorrow.

Does anyone else with KLS sleepwalk? Is this a symptom? He’s sleptwalk (Is that a word?) but it’s been mostly harmless things he’s done. This? Not so much! I am usually up at all hours of the night watching him but last night I actually crashed and didn’t hear a thing, despite being right near the bathroom. Any suggestions? Comments? Answers? Ideas? Help!

Welcome to puberty: Longer Episodes and more frequent

2008-10-08T12:25:36Z

What a “welcome to puberty” my poor daughter has had. She’s now 12 years old and this year she started having her period. Until now, we thought we had her KLS under control - if you can call it that. Through a treatment program that includes Provigil, Trileptal, and strict bed times, she was experiencing only 2 episodes a year always late December and January. They usually lasted 7 days like clockwork for the last 5 years.

This year, though, she started her period. They are very irregular and the last 2, only 2 weeks apart, had incredibly heavy flow. So much so that she was hospitalized and put on IV estrogen to try to stop it. But, as distressing as that was she now goes into a KLS episode within 10 days of the end of her period in all but one case. And, to make matters worse, they are lasting 2 weeks.

When she was released from the hospital, the doctors put her on birth control and, in hopes that it would help the KLS, she is to skip the placebo week and start the next pack so that her levels remain constant. Their thinking being that the drop in estrogen levels that triggers the period to start may also be triggering the KLS. Between KLS episodes and the excessive blood loss she has missed more than half of the school year.

Have any other girls experienced this?

PROVIGIL WORKED for me…for 2 and a half days. Then mysteriously stopped.

2008-08-07T18:15:23Z

PROVIGIL WORKED for me !!!!!!! ...for 2 and a half days. Then mysteriously stopped.

It COMPLETELY removed my symptoms, MID-EISODE, in 11 minutes.

It worked for 10 hours the first day. It worked for 8 hours the second day.

The THIRD day, I woke up achey, but OTHERWISE symptom free. I got my menstrual cycle (my period) that day. I thought THAT was why I was achey. THEN AT 2:30 pm, MY SYMPTOMS CAME RUSHING BACK LIKE A FLOOD !!!!!!!!!!!!!!!!!!!!!!!

The Third day was YESTERDAY.

HAS ANYONE HAD THIS EXPERIENCE???????.....thank you !!!!!!!!!!!!!!!!!!!

SUNSHINE

do you leave the house during episodes or recoveries?

2008-09-15T11:52:18Z

i was wondering if any of you leave the house during episodes or recoveries???

when i have my episodes i won’t leave the bedroom. then when i start to recover
i start slowly moving on to the living room. then towards the end of the recovery i start
sneaking out into the backyard very very late at night in the protection of darkness when
the chances of being seen by people is very low. then i gradually start sneaking out onto the back steps during the day if i don’t
see or hear anybody outside.

then eventually i’ll go on car rides with my wife.

but i don’t go out by myself until i’m completely “normal” again.

do others act like that, or do you still go out during episodes/recoveries???

do some of you also become afraid to be around other people during episodes/recoveries???

how do you deal with it??? i’m always so afraid because i can’t tell if somebody is talking to me or if i’m just imagining it. or
i can’t tell if i’m actually saying something, or if i was just thinking about saying something but didn’t say anything. i can’t
tell if what i’m seeing is real or if i’m making it up, or if what i’m hearing is real or if i’m hearing something else. it’s so hard
to tell what’s really going on.

oh and my wife discovered that during my recoveries i’m absolutely horrified of uniforms. she said anytime i see a uniform i panic and go back to bed. apparently one time during one of my recoveries i asked her to go for a walk with me very late one evening after it was dark. but once i got to the door i saw an ambulance outside paniked and went back to bed.