KLS Foundation Discussion Forum

Important Warning for taking Medications while in a KLS Episode

2008-07-07T15:21:57-08:00

My name is Lori Haller and my 18-year old son, Eric has KLS. He has battled this disease since he was 11 years old. I am sharing this experience so that nothing like this happens to you or your loved ones.

On the first day of an episode, we started Eric on the medication Provigil, in an effort to minimize his KLS episodes. After three days on Provigil, he started convulsing and an ambulance took him to the hospital. I took many articles about KLS to give to the emergency room staff so that they would better understand this disease.

Eric became extremely agitated and physical in the hospital and talked incessantly, which he never does in an episode. He told the nurses that he couldn’t stand having KLS anymore and he wanted to kill himself. With that said, he was then put into the jurisdiction of the police department and transported to a psychiatric hospital. By the time he arrived, the Provogil had worn out of his system. He was in a normal KLS state and did not remember any talk of suicide.

Eric was begging to be taken home. The nurses at the hospital had the security guards remove Eric’s dad and me from his side and we were not allowed to see him until the visiting hour the next evening. We stayed in the lobby all night and all day and NO ONE would answer any of our questions. Meanwhile, Eric’s doctor, the psychologist who diagnosed him with KLS, and two other doctors- both experts on KLS and KLS research called on our behalf, e-mailed and faxed information regarding KLS. They all recommended that Eric be released to his parents immediately to diffuse the fear and horror that Eric was experiencing by being forcibly held and separated from his parents while in an episode. We even sought the help of a patient advocate.

The psychiatrist assigned to Eric finally arrived 18 hours after Eric was admitted. He evaluated Eric in five minutes. He said that he had treated someone with KLS before (an obvious lie). He said Eric was depressed and needed to stay the legal 72-hours in the lock-down ward. He made this decision even though he had the authority to release Eric to us immediately. He said Eric “needs group therapy when he is here.” He would only allow us to talk with him for five minutes because he said we were wasting his time. I responded by saying “Wow”. The doctor mimicked me and left. We then hired an experienced attorney who handles such matters.

When we went to see Eric in the lock-down ward during the visiting hour, he was emotionally distraught; he was sick to his stomach and was throwing up on the floor. Eric begged to be sedated so he could sleep through this nightmare. We later learned Eric could not sleep nor eat when he was in this facility. He was put in seclusion in a tiny room for 16 hours because he cried for his parents too much. The staff told us he needs to learn to be “more independent” from his parents. They still did not understand or care about KLS, it’s symptoms or the patient’s needs.

Eric was finally released three days later, only 12 hours early from the 72-hour hold, probably from the pressure of a lawsuit from our attorney.

Once a person utters the words suggesting that they will harm themselves they can legally be held for 72 hours. Eric’s episode lasted 13 days. He is fine now, but he was very traumatized for months after this experience. My hope is that you learn from our story. If you wish to find out more details, please feel free to contact me.

Lori Haller, Eric’s mom
Placentia, California, USA
Loerry2 at yahoo dot com

Low Dose Naltrexone, Revia

2008-05-10T11:17:31-08:00

Hi!

Has anyone tried Low Dose Naltrexone, or Revia ? I am considering it. It was on a Kliene Levin survey I took, (as a ‘have you ever tried any of the following’ list) .It was a drug I have not tried yet.

I cut and pasted this from Web MD:

“Naltrexone belongs to a class of drugs known as opiate antagonists. It works in the brain to prevent opiate effects (e.g., feelings of well-being, pain relief). It also decreases the desire to take opiates.”

ps, I do NOT have an opiate addiction...I only have Kleine Levin, asthma, restless leg syndrome, and orthostatic intolerence.

Love,
Sunshine4tullip

Avanza, Zyprexa and Xanax

2007-08-12T22:06:25-08:00

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…

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2007-08-09T14:22:44-08:00

Neuroleptics (Abilify, Risperdal, Zyprexa, …)

2007-08-09T14:17:35-08:00

I was wondering if some of you take or had to take neuroleptics in the past (also called antipsychotics) ?
I have been taking these ones for many years for KLS associated with bipolar disorder. They help a lot to avoid hallucinations too which are common symptoms in KLS and must be prescribed by a physician.

The first one I tried when I was 18 was, under the trade name, Haldol (haloperidol). It helped but there were annoying side effects. Then I stopped it and was better, my last episode happening when I was 30. But I still have been taking other neuroleptics the years following even that KLS has gone away for 9 years now :

Zyprexa (olanzapine) : had to take it for a while in the past.

Risperdal (risperidone) : I am taking it for a few years, it is working well, but have stopped it recently because I just started Abilify instead.

Seroquel (quetiapine) : had to take it for helping sleeping at night, annoying side effects, have stopped it. Would not recommand it.

Abilify (aripiprazole) : I am currently taking this since April, 2007 and I must say I am very satisfied so far. Almost no side effects (except a little bit sleeplesness sometimes).

What about you ? Do you have any good or bad experience with neuroleptics ? I have always been worried every time I had to start taking a new one, but they usually help a lot and allow me to keep busy working and maintain a social life every day.

Nicolas