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!!

There have been a number of drugs that members have taken, including Provigil.  Currently there are a few members that have been trying Cytomel.  Results for all drugs have been mixed at best to date.  The biggest challenge in gathering data on medication use is that due to the cyclical nature of KLS it is often no definitive if a medication worked or the episode(s) just ended.  So far none of the various medications tried have proven effective long term or consistently for a large percentage of those who have tried it.  We will continue to share information on medications that we hear about in the future and encourage people to share their experiences through the forum or contacting the Foundation directly.

My son finds Provigil just makes him feel wired awake but unable to function. When he is deeply in an episode he just sleep through its effects. Hope you get some relief soon.

re cytomel. That raises thyroid T3 level. My daughter indeed needs higher levels of both T3 and T4. She needed both anyway, and now takes Armour Thyroid. The key though, FOR HER, was that the ranges needed to be in the high end of normal rather than the low end.  Even so, this was not enough. (This may interest you Here)

Provigil (now she takes Nuvigil): This has been critical to her survival in college. Some teachers insist the student’s body is in class even if the mind is not. Since college classes are mostly just 50 minutes, we managed to get her stumbling in to her seat even during sleep episodes (sometimes). She would double up on dosage and go back to sleep for another hour and then there was the start of getting her up and out. She couldn’t even walk without assistance. BUT, without the med, there was no hope at all.

We THINK (not sure) that the Provigil did help in general, but she can sleep through even maximum dosage. I know someone else who tried 1/8 of my daughter’s dose and she felt anxiety and like her head would explode.

We do know that since getting her thyroid levels up, and being on Nuvigil, she is not having sleep episodes, but there have been other changes - dietary, hormonal, food supplements -  and of course, it may be coincidental. She is older (23) now. Might that be a reason? We cannot be sure.

We to have put my son on nuvigil and cytomel .it did seem to stop the sleep episodes till we had a issue at the school that caused him to have anxiety.People with sleep orders are prone to anxiety and KLS pt in past studies show little or no help from the meds that can be given. The school of course blamed it on the fact i am a fierce advocate for his rights. They question if KLS really is?!We have my son taken in monthly weight and I report his sleep meds so they go in his record . He has been home Three weeks and seems to have gone back to a steady sleep. he sees the PCP tues and the nuro 6-14-11 . We will see . Fingers crossed.

I tried Provigil once during an episode but it just made me feel artifically awake, like my eyes were glued open even though I still wanted to sleep.  Think, in my case, it kept me from sleeping and possibly stopped me recovering as quickly -I wonder if, that although it helps people function - your body shuts down for a reason, and messing with it from doing it’s job - it keeps the episode going longer.

My son is currently in an episode.  His neurologist prescribed provigil at the onset of symptoms.  It has helped him stay awake long enough to eat and drink enough that we were allowed to take him home to care for him.  It is hard to determine if this is just a less severe episode or if the medication is completely responsible for helping my son.  Unfortunately, it may take additional episodes to be sure.