KLS Foundation Discussion Forum

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.

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?

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??

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.

Which KLS symptoms LEAST fit your case or family member’s case?

2010-09-05T08:56:01Z

I just posted a forum note about my son who gets sickness episodes every 5-6 weeks, lasting 6-9 days. This has been going on for 6 years (starting in 4th grade, now going into 10th grade). His recurrent illness affects school (missed close to 60 days of school last year), our family’s stress level and most importantly, our concern for our son, who may become more passive and less involved in life in general, knowing that he will be sick again in 5 weeks. This summer he was diagnosed genetically with cystic fibrosis, but a mild case, and with KLS. Not all the symptoms of KLS fit my son’s case, so I am posting a poll.
The poll’s format has not allowed me to get the answers I had hoped for,nor will it allow me to edit the original question too fit the site’s format. The question SHOULD READ—-Which symptoms LEAST fit your case or family member’s case of KLS?
ADMINISTRATOR: Could you change the question to read appropriately??

undiagnosed new zealander.

2012-01-05T08:41:32Z

hi everyone,my names terri and for a long time iv been looking up human hibernation not knowing of kls.for me my episodes happen in the winter so i thought im either a bear or have seasonal afective disorder.the first time it happened i was single ,living alone so it was great.it was a 3 month session,friends mowed my lawn and walked my dog and i just slept,waking only to eat toast and go to the tiolet about every 2 days.my friends thought i was dying because for a slimly built woman i am a powerhouse of strength and energy,working hard out on weedeaters or chainsaws and leaving the boys for dead.my dear friends say good bye to me in autum,break into the house to check im breathing and know when the spring lambs start jumping that il be awake soon.i have a child now.oh boy this makes thing hard.i wake to take her to school at 830,by 9 im asleep again.i wake to pick her up though i sit there for a wee bit really angry that i have to wake and may sit for 15 mins wondering why im awake before i realize i need to pick my girl up from school!!!we come home,i cook dinner in a daze,we eat and then we sleep.i end up getting about 18 hours a day.i hate having to wake,its like i cant put two thoughts together.it takes soooooooooo much energy just to sit up or move my arms or legs.people visit and i dont remember.i guess i just dont want to feel alone in this anymore.hahhahhahahaha so hey is this normal?

Anti-anxiety medications

2011-12-02T21:16:51Z

Nearing the end of episodes, my daughter becomes anxious and worried that she is not going to come out of it. She sleeps less and cries more. Do you feel it would be harmful to introduce an anti-anxiety medication, such as Xanax, to lessen this anxiety?

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…

Can Provigil help KLS?

2010-04-21T18:18:41Z

I was wondering about what drug to take to help control my KLS…a friend told me about Provigil,he has MS,i know thats completely different but he said it helps him to stay awake!Im desperate,I cant go on sleeping like this anymore,I sleep atleast 20hours a day!!