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.

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??

questions, emotions, ranting, etc aka the “I turned 30 Last Week” Post

2011-01-12T16:20:38Z

So I did. Turn 30 last week. It hit me real hard. I don’t know what the “normal” adult with KLS life is like but I am unable to work and most days, even with my 60mg of adderall, taking a shower or doing the dishes feels like climbing mount everest. The friends who actually still keep in sporadic touch with me are settling into their careers, getting married, having kids, buying homes, etc. I tried so hard at the beginning of this “syndrome” to keep jobs. There was the temp job that I blew by calling my boss during an episode and leaving a cursing, scathing, tantrum-ish voice mail that I have no recollection of sending but the people at the temp agency assure me I did send it because they’re the ones who had to fight to keep the account. There was the month or so at Starbucks where I drank maybe 10-15 shots of espresso during a 6 hour shift, couldn’t seem to grasp or remember anything - even how to work the register (and this is after working 4+ years in retail and also only 1 year after writing an A thesis/graduating from a good college with a B.A. in English and a 3.4 GPA) - and crashed the second I got home like I had been drinking water all day and not caffeine. There were maybe 5 or 6 jobs. There was the plan to move to Sarasota and attend the grad school of my dreams (New College - a hippyish school that’s the Honors College of FSU) in one of my fave (domestic) cities. After my dad, the person I thought myself closest to in life, completely did a 180 and became hostile and “fed up” with my “laziness,” I moved in with my mother (we were semi-estranged (but getting closer) for many years due to my inability to forgive her past transgressions). The plan was to stay 6 months to a year at most, work my butt off (saving money b/c I wouldn’t have to pay rent, etc.) and then down to FLA where grad school and a cool job teaching freshman english and palm trees and my fave cousins etc were awaiting me. That was about 4 years ago (I think). I am in serious debt and, due to 30% interest rates (and a lack of incoming $, obviously), about to max out what little credit I have left. My mom is in the red because of me; I am currently eating and sleeping and living her retirement account while she (who will be of retiring age in a couple years) works from home at least 80 hours a week. And does my laundry. And wakes me every morning to take my medication. And gives me money for day to day stuff and does my grocery shopping and listens to me whine and has to deal with her 30 year old daughter cursing her out at the top of her lungs when she tries to wake me or makes too much noise walking down the hallway or cleaning my cats’ litter box. I should be taking care of her. As my dad said to me yesterday, “people are living their lives. Doing things. Getting older. Turning 30. Shouldn’t you have some kind of life.” (an approximation) We still have no real relationship and any communication is strained at best. I was the epitome of daddy’s little girl until my mid-20s and although I know that I was a very difficult child, teen, and young adult to deal with, he was always my ally, my knight in shining armor, my best friend, etc. I see him maybe 4 times a year now for family events. Any time we speak he just grills me about my life. He looked at me like I was crazy when I asked if he was ever proud of me any more and replied, “for what? You don’t DO anything.” He refuses to accept that I am not doing “this” on purpose, that there could and is something physically wrong. So that’s that I guess. The biggest heartbreak of my life, no doubt, but the type of situation the Serenity Prayer (“grant me the serenity to accept the things i cannot change, the courage to change the things I can, and the wisdom to know the difference) was written for. Actually, this whole post, all I’m thinking about, hating on myself for, etc. could do with a dose of that wisdom (btw, I am not at all a religious person - sometimes on Yom Kippur only - it’s the quote/prayer itself that resonates with me.
I must admit I am also discouraged because I wrote an introduction post (I’m a newbie to this site - this is my 2nd posting) baring my heart (I have found that hardly ever leaving the house let alone doing anything social, often finds me giving strangers a big dose of tmi), asking for help with finding a doc to help w/ diagnostic process, and explaining that I have gone the past 4+ years of kls symptoms without speaking to one person who is even really familiar with the disorder, let alone someone who can relate to me or has a loved one who can. Today I saw that 19 people read my post but no one responded. Maybe this isn’t typical forum behavior, these long notes. Perhaps I should start a blog for this type of thing. I just really need some guidance in all areas of this kls-existence and if anyone is willing to listen/read or, even better, share their knowledge and experience with me, (thank you, first of all but also) please know I am very rarely this long-winded and pity-party-esque. Nor am I gonna bug you. I’m only awake 2 days a week as it is :)
I have an english degree, writing is what I do (did?) so here’s the writer in me aka what’s been repeating itself in my mind lately: living with KLS, what it does to my mind - besides convince me that I have regressed to a reasoning/memory/etc IQ level lower than I possessed as a small child - is make me feel I am almost constantly in one of those nightmares where you realize you are dreaming and so you try and try to wake yourself and you think you have succeeded in doing so only to realize, upon the reemergence of whatever made that dream a “nightmare,” that you are simply dreaming that you are awake. So you try to wake yourself. You think you have. Repeat ad infinium/nauseaum. I don’t feel 30 not just because I dont have the life a 30 year old should have but because I have been asleep since i was 25…

Sleepovers

2011-07-21T19:17:18Z

Is it okay for my son to go to sleep overs. One time he was up all night and the following day an episode began. There is no common trigger.

Son may have to drop out of high school - Stories of others??

2010-10-21T12:44:31Z

Our son has now missed his whole first term of Sophomore year in High School due to a KLS episode which started after the first week of school. He takes all Advanced classes, does very well, has many friends, but having missed a whole term, even being on the 504 plan and having understanding teachers, we see no sign of this episode ending soon, making us wonder whether he may have to drop out. Also during this whole time, he has been asleep or awake with little concentration to do any homework. When he tries Algebra to test his brain, all the problems he used to get right are now wrong. He cannot focus even on reading.
When it was mentioned to him one time that he may have to stay back a grade, assuming he doesn’t get better, he burst into tears and said he would rather drop out of high school altogether. Finding a homeschooling network has been brought up, but again he needs to be out of an episode and be able to concentrate.
It would help to hear stories of others who had children or themselves who had to drop out of high school. How long did the episode last before making that decision? When did he/she come out of the episode and then what did he/she do, if it was too late to go back into that grade? Any attempt at jobs and a GED instead? How to keep busy if you know you will be hit by another episode and cannot commit to job or school? Thank you for any thoughts or experiences.

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

Headaches

2007-10-26T11:05:20Z

My husband is currently having an extended episode but he has been complaining of continual headaches during this episode. It is currently up to 26 days and we wondered if other KLS sufferers experience headaches during their episodes or if this is unusual?
-C

KLS Facebook Groups

2009-12-31T19:57:06Z

Hi Everyone,

I just wanted to share with you some KLS groups that have been formed on facebook. These groups are great ways to stay connected with the KLS community and to raise awareness for KLS. Please join them if you have a facebook. Here are the links:

http://www.facebook.com/#/group.php?gid=47093717831&ref=ts

http://www.facebook.com/#/group.php?gid=2475711743&ref=ts

http://www.facebook.com/#/group.php?gid=106441131749&ref=search&sid=100000550846663.3183414010..1 -(this is an Australian group for KLS sufferers)

Thanks!
-AW