KLS Foundation Discussion Forum

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!

What happens to you after you come out of an episode?

2012-02-29T17:58:04Z

I just went through a ten day episode and my body has been feeling a lot weirder than it does when it usually “recovers.”

I usually can’t sleep for the next few days as my body adjusts to soo much sleep before. I feel fat/bloated, I have been having to urinate about 10 times a day even when I don’t drink water, I have an excessive amount of energy although I am tired from not being able to sleep, my hands sometimes shake,

this episode I barely ate any food at all because no one was here to take care of me… now I feel hungry literally right after I eat anything. I have been eating all healthy foods and exercising and eating large amounts of food.

Does anyone experience similar problems?

Is head/face swelling common

2010-12-27T21:08:43Z

My son is newly diagnosed & so we are just coming to terms with what is KLS related & what is not. During his episodes his head & face swell considerably. In fact, if he leans on anything that part of his face will pit. Has anyone else ever experienced this symptom?

Amantadine

2010-09-29T19:45:23Z

Can anyone weigh in on pros and cons of Amantadine for KLS? How about medications where KLS is co-occuring with ADHD?

Avanza, Zyprexa and Xanax

2007-08-12T22:06:25Z

Just thought I would share some information re: various medications and KLS;

I have suffered from depression / bipolar disorder and anxiety disorders in the past
I had tried many types of anti-depressants but the onset of my KLS happened at the exact time I was started on a new anti-depressant called Avanza. I was warned before I started to take it that I would be extremely sleepy for the first three days - started taking it and next thing i know I am waking up in hospital 3 weeks later (having been committed by my father and girlfriend in a court proceeding!) after being in a sleepwalk-like state (or conscious but believing I was still in bed dreaming) - oh yea, and I was completely mute and if I was asked to knock on a door would knock a few centimeteres away from the door without making contact with it etc etc
In my dream state I remember continuing to take the prescribed Avanza for the 2nd and 3rd days as well as the first. I don’t know if this was the trigger but the timing is uncanny. Also re the flu theory - I don’t remember having any flu like symptoms around my first onset.

re Zyprexa - it is a horrible, horrible drug that will leave you feeling you are fighting your way out of cotton wool the whole time. Maybe it is a great anti-psychotic for people with schizophremia but in so far as treating KLS I would suggest don’t go there. Futhermore while I was in my catatonic state for 3 weeks from my first onset - I dreamt that nurses were giving me medications (of course this was in fact reality) and my mind started to tell me that this was why I was stuck in this horrible dream so I started to pretend to takes the pills, spit them out and hide them in a corner of my room. Guess what - after 4 or 5 days of this going on I became lucid again! I think i was being given Zyprexa and Effexor.

re Xanax - I have used this in the past for anxiety disorder (be careful - it is EXTREMELY easy to become addicted and dependant on this if used for long periods). After as many as 12 relapses in the first 2 years from the onset (each less severe and shorter in length usually) my girlfriend discovered by giving me 2mg of Xanax towards the end of the episode (that horrible time that seems to go on forver where you know you are in an epsisode but struggling to come out of it and back into reality) it seemed to help me come out of it sooner. I am not sure how reliable this suggestion is - I am only putting out there as a possibility.

hope some of this is useful to someone out there…

Lithium

2010-03-02T21:45:52Z

Has anyone had good results with lithium? We put my son on lithium 4 1/2 months ago, and his response was DRAMATIC. After about two weeks, he was like a completely different kid. He had come out of a five month episode, and in his own words, ” Hadn’t felt this good in five years”. He started back in school after missing the entire first quarter, and did extremely well, even making the high school basketball team. Then, just last week he went back into another episode. I do have to say it hasn’t been as severe, and I’m hopeful it won’t last as long. ( His norm is frequent episodes - The five month long one was NOT typical at all).

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

How old were you when you had your first episode ?

2007-08-09T22:59:26Z

I was 9 years old when I had my first episode.

New mom dealing with her son’s KLS episode

2009-06-18T07:17:05Z

Hello everyone, my name is Ieesha Anderson and my son was diagnosed with KLS in March. He is 10 yrs old. I am a single mom and pretty much has to deal with this all alone. I really need the support from other mothers on how to cope and deal with this.

Amnesia/KLS

2012-01-06T08:43:19Z

My son is 30 years old and has been diagnosed with KLS for 10 years. The other day he woke up and was 14 years old. He was living in the year 1995. Anything past 1995 he had no memory of. We took him to the ER and all the tests were negative. Two neurologists were consulted and their thinking was he had Transient Global Amnesia, this could last a few days to 3 weeks. The next morning he woke up and was back to 2012. He had no memory of the previous day. He had a headache and his left eye was hurting after he woke up. He is feeling tired still but prolonged sleep yet. Has anyone ever experienced anything similiar prior to going into an episode??