My 13 year old son was just diagnosed with KLS about 2 weeks ago. He has episodes usually every 2 weeks and they last 7-8 days each. He has had 9 of them since the first one in February of this year(2007). We have learned not only the rarity of this syndrome but that my son’s results where ‘impressive’ from what the doctor said from the sleep study, which tells me it’s probably even more rare in his particular case. Anyway, my question is: Does anyone know of someone taking Provigil for this syndrome? I need to have some insight on how well it works, how long it takes to have somewhat ‘normal’ time during episodes, etc. I would like to have contact with any KLS patients and/or parents of KLS patients and/or doctors please.

This syndrome has been so hard for our family of 5 but super hard for my husband to understand and deal with.

I appreciate being able to come to a website like this and am looking forward in chatting with anyone interested.

Thank you, Tracy

Hi Tracy,

My son is 16 and was diagnosed with KLS in January of this year. He had struggled with the challenges of KLS for almost 2 years before the diagnosis. It is difficult for all families that have a child that suffers from this debilitating situation. My son take provigil. He started taking it in February and notices if he misses a day. He stopped taking it in June and asked to start taking it again about 2 weeks ago. Accept for the first week, we have seen no concerning side effects, however, he notices an ability to concentrate more. It will not ‘wake him up’ if he is in an episode, but does have some positives with it. He also for a time was taking wellbutrin with it, but we have stopped that for now. We may add that back in closer to school, my understanding is that they work as ‘awakening’ pills. Please feel free to email me if you have further questions or just need additional support. .(JavaScript must be enabled to view this email address)

Hi Tracy,

My daughter is now 19. She was originally diagnosed at the age of 13. As you will find out KLS is unique to each individual. My daughter takes Provigil only during an episode. It does not keep her awake - however it does give her about a four hour span of time where she can function and eat something to keep her healthy. Without the Provigil she sleeps straight through without eating and taking care of herself. We have tried several of the Anti Depressent medication (Wellbutrin and others) and Anti Anxiety (Paxil - Xanax) medication but they tend to cause more sleep for my daughter. As I said each person is different and I know that these meds have helped others, so it really is a matter of trying it to find out if it will work.

Best wishes
Shari

I took Provigil during a couple of episodes.  It kept me awake but didn’t help wtih all the other symptoms of KLS.  I was still tired and drowsy, my head was unclear, I couldnt communicate any better, I became very frustrated and agitated, becuase during an episode, honestly, our heads are so screwed up (which is very hard to try to explain how it feels, but we know!) anyways, all we really want to do is sleep it off, becuase time seems to go by faster if we can just sleep, rather than be agitated and awake at a time where we feel ultimately vulnerable and completely whacked out.  The more we are awake during our eipsodes, the more time our brains have to mess around with our minds.  Just my opinion but…it didnt do anything to me but make me more agitated and in the end, it was more of a hassle for my parents to give it to me and have to deal with my nonstop crying than to just let me sleep.

Totally agree with Tanis, I have tried Provigil twice on episodes, having just come out of the last one and I still had all the symptoms but just had an ‘artificial awakeness’ - I had my eyes open but behind them I still felt the need to sleep, the unclear head etc, and I also felt very frustrated and anxious about things.  I also had side effects - heart palpitations and tension in my muscles - so much so I just stopped taking it and let the episode progress in its own way.  Don’t think I will take it again - I believe the body shuts down and craves sleep during an episode because it needs to recover, and by taking provigil I am interfering with that ‘healing’ process.

Please see my son, Eric Haller’s experience taking Provigil which I posted under medications.  Eric was one of those who could not tolerate the drug at all.  Eric’s experience could happen to anyone taking any new drug where they have an adverse reaction.  Since many doctors do not know about KLS,  they may assume you or your child has another problem and misdiagnosis the patient even if you alert the medical staff that the patient is in a KLS episode.  That is why the KLS foundation is doing all we can to educate the medical field and the public.

Best Wishes,
Lori Haller, mom of Eric