Hello my name is Ryan I am 23 years old and live in California. I wondering if anyone who has been episode free for sometime if they just stopped or if they had smaller less severe episodes . I think and hope that I might be growing out of having KLS.

My first episode was when I was 17 years old on New years day 2002. My diagnosis was determined in the year 2004. I self diagnosed myself with some research. Then went to a sleep doctor in La Jolla, California he then did confirm I had KLS. I was given meds but nothing worked.

I basically had episodes on and off every 2-3 months and was sleeping for 20+ hours a day I had hallucinations and was very emotional also was very very hungry for carbs especially sweet cereals! Episodes lasted about 2+ weeks with “peaking” during my episode around the 8-10th day. I found out after I was diagnosed that I seemed to be able to accept my episodes better because I had an answer of what was wrong with me.

I have been kind of episode free for almost 2 years now. I have found that I may have had some “mini” episodes during this time which means they have lasted for only 2-4 days but that I can still function in society. Maybe only once or twice a year during that time. I think I might be growing out of them. But I would like to ask someone who has been episode free for sometime if they found that the episodes were less severe then eventually had none.

Thank you
Ryan

Dear Ryan,

I read your post with great interest for several reasons.  We also live in California and have had no luck finding a doctor in the area who has any experience with KLS or who is willing to diagnose the disorder.  I am interested to know who it is that you saw with success.  My Son Brian is 15 and had his first episode in April of 2007.  He too has had some mini episodes in addition to some regular 2 weekers and in talking with other KLS people I hear that this is not uncommon.  He reports pressure behind his eyes, feeling tired and he will sleep as if in an episode but not go into the full blown disorientation and confusion of an episode and then it just seems to pass after a couple of days.  Is this like what you have experienced?

I hope that you are growing out of KLS and will remain well.  We are in Carmel Valley, which is east Del Mar. If you are comfortable with it, we woudl like to share information on resources in our area as well as the effort to educate and spread awareness about KLS in our backyards and elsewhere.

Thanks for taking the time to share yoru story.
Gaylene

Hello Gaylene,

I am Ryan’s mom unfortunately he is in an episode so I will answer your email to the best of my knowledge. He tells me that he knows when an episode will be coming on it is a certain “feeling” he gets. Right before this current episode he had a bad headache.

I am sad that your son also has KLS but this is a great place to talk to people and learn what we can about this condition.

Our doctor is:
Bradley J. Schnierow
Adult & Pediatric Sleep Medicine
9900 Genesee Ave
La Jolla, CA 92037
(858) 623-3266
‎
We also saw a female Dr. up here in North County but I will have to research to find her name again since Ryan has been episode free for over 2 -years it took us for a loop that he got this episode we thought he had grown out of them. So I have not really contacted any of the Dr.s for a couple of years.

With Dr. Schnierow Ryan was one of his first patients but he was familiar with the condition he wanted to try some medication on him but I was to scared so we denied it. It was a narcoleptic
medication that induces deep sleep.( I found that strange because he does not have a problem in sleeping when he is in an episode) His theory was to induce Ryan’s sleep so he gets a deep REM sleep. But I didn’t want Ryan to be the guinea pig with this strong medication that had to come from a central pharmacy in the US because local pharmacies don’t even carry it.
If you have any questions or would like to talk to us you can call us. 760-631-1234 We are in North County area. email:

Sincerely, Iris Robin
Ryan’s Mom

I still get full blown episodes but in the past 12 months have had times when I thought episodes might be coming on - feeling extremely exhausted and just not right in my head for about 3 or 4 days - but not the full blown ‘feeling’ that I normally get.  It is like it is floating around in the background and the episode has not decided whether it wants to strike or not!  Then I have felt back to normal again - I have still been able to operate normally during this time. 

I am not sure whether this means they are going away - the last episode I had was in february of this year and that lasted for 3 weeks from start to finish which is the longest it ever has been but only one week at the beginning was I sleeping.  The rest of it was just recovery where I still didn’t feel right, still had the dreamy feeling I get and couldn’t and didn’t want to go out, so couldn’t go to work or anything. 

Just try and stay positive - if anyone ever asks me I always say to them, these episode may never happen again but then it may strike tomorrow, so I just get on with life and do as I would if I didn’t have KLS!

I hope Ryan is coping ok and he comes out of this episode soon.

Nat
xxx