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…

I was very interested to read what you said about xanax because we have experienced the same thing about the benzodiazpenes…We have used 0.5 mg of xanax at different times during an episode and found that it has no benefit during the acute phase but seems to be very helpful when one is emerging and sometimes has startling results at clearing things.  We are rather new to KLS - our son Brian has had 3 episodes that started back in April and the only reason we thought to try xanax was that Brian became completely clear for 2 hours following his lumbar puncture when he was hospitalized ( first episode) and we later hypothesized that this brief respite might have resulted from the drugs they gave him before the procedure to keep him calm and cooperative.  That drug was versed which is a cousin of xanax.

I mentioned this to Dr. Mignot when we visited him last month so I know that the researchers are aware of this but it is good for them to hear that more than one KLS patient has had this experience.

Hope you are well now and have a great Thanksgiving.
Gaylene

My daughter experienced extreme anxiety and perhaps depression near the end of her episode, fearing it was not going to go away.  I also wondered about the effectiveness of an anti-anxiety medication such as Xanax during that time.  Would like a professional to weigh in on if that would be helpful. 
Thank you.

The doctor prescribed my son Klonopin for during an episode when he begins to have fear and panic attacks. I gave him a xanex during an attack and it seemed to help calm him down but it didn’t appear to have a big effect as you would think. I haven’t tried it while he is coming out of an episode to see if it has any effect yet. And I noticed the same efect…my son was put to sleep during his first episode for a spinal tap and mri and both times when he awoke he was almost 100% normal for like an hour.