KLS Foundation Discussion Forum

Vitamin D

2008-10-14T14:04:24Z

My son went in for a check up because he was feeling very fatigued even in between episodes. The doctor at Mayo did a vitamin D test and found an extremely low level, one of the lowest he has seen. He went on 5000 IU’s of supplements per day, within 2 weeks was much, much better. After three months, his level was more in the normal range. Interestingly he also has not had an episode since March when he went to Mayo, where before he seemed to never truly come out of it (a year of fog). He was homebound last year because he could not keep up in school or even wake up to go to school (12 week episode, 8 week episode), now he is back in school and more normal than I have seen him in 2 years and the only thing different is the Vitamin D supplements and melatonin a couple times a week to help regulate his sleep when he needs to.

I wanted to pass this information on since it was such a major difference in my sons life. There is now also a ton of information out there on what a low vit d level can effect..worth checking out, relatives and friends that have seen the difference in my son cannot believe that a supplement could make such a difference, we are all now taking it regularly. This is definitely something to watch, specifically with the episodes and lack of sun during them. The food and multivitamins generally are not enough. My son also goes to the tanning bed 2-3 times a week as an extra source of vitamin D.

Can Provigil help KLS?

2010-04-21T18:18:41Z

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!!

amantadine with Gabapentine has a positive impact

2013-02-19T06:57:14Z

My son has KL for two years now, from 13 years old (he is now approaching 15), very long episodes, from one to 3 months, often with only about a month symptom free in between. We started Amantadine last year, 100 mg a day. It made his episodes much lighter, depression and other psychiatric changes accompanying the episodes much milder. We kept giving it regardless if he was in episode or not. The whole summer for 3 months he was symptom free. Then an episode started in October. While on Amantadine 100 mg). A doctor decided to stop the Amantadine two weeks into the episode. Full blown episode developed until the end of November (sleeping 16-18-20 hours, heavy depression and lethargy, mutism, can’t do much during waking hours).

Then we decided to start the Amantadine again, 200 mg, and right away the episode reverted into a lighter episode between the end of November and beginning of January, sleeping 14 hours a day, light depression, less lethargy, no mutism, able to study with tutor).

It is usually very difficult for my son to go out of episode, it lingers for some months, sleeping 12-14 hours, occasionally 16, and he feels very tired.

Then in the beginning of January we got prescription for 300 mg Amantadine in the morning and together we started Gabapentine before bed, 100 mg for 2 weeks, 200 mg for two weeks, then we are supposed to go up to 300 mg and stay there. The effect of the combination was astonishing. It started working since day one, by gradually diminishing the sleeping hours, and by making him more alert and less tired and lethargic during the waking hours. When we arrived at the dose of 2 gabapentine, his depression lifted away, and we still stay at 200 Gabapentine. The episode is lifted and now, February 18th, and we have a completely clear time, and a boy who completed his school semester with the high grades he always had ( he has not been regularly gone to school for 2 years now, he only goes between the episodes and works with tutor). I still see some depression, but the usual sense of humor is back, and there is plenty of time for friends. Next week we will ask the doctor if we should go up to 300 Gabapentine or we should stay at 200 since it is helping.

We don’t know how it is going to work if we keep giving it. We don’t know if it would prevent an other episode, if it only would make the episodes easier, if it going to be useful when he comes out of the episodes,or it would stop working altogether at some point. If it works, it means that we have some sort of glutamate and GABA malfunctioning which needs to be regulated.

Our doctors think that we need to add something to take care of depression and mood swings, but not before we build up the full dose of 300 mg Amantadine with 300 mg Gabapentine and see how the combination works?

The doctors are thinking of giving him lamictal (because of similarity between KL and bi-polar; my son also has the reversed circadian sleep pattern at the end of the episodes, where he can’t sleep during the night and sleeps during the day at the end of the episodes, followed by a very short (one day) and very mild hyper mood (not mania yet, but some similarities).

I am not sure we should give lamictal, since these mood changes and the depression are strictly attached to the sleep episodes, and are gone as soon as the episode ends.

I want to try Transcranial Magnetic Stimulation, but it is still experimental for adolescents and it is hard to make insurances to pay something. THere are no studies like that for adolescents in the New York area. I wish we could subscribe to a study for free to see if it is going to work.

Did somebody have experience with similar medication constellations?

Amantadine

2010-09-29T19:45:23Z

Can anyone weigh in on pros and cons of Amantadine for KLS? How about medications where KLS is co-occuring with ADHD?

Avanza, Zyprexa and Xanax

2007-08-12T22:06:25Z

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…

Lithium

2010-03-02T21:45:52Z

Has anyone had good results with lithium? We put my son on lithium 4 1/2 months ago, and his response was DRAMATIC. After about two weeks, he was like a completely different kid. He had come out of a five month episode, and in his own words, ” Hadn’t felt this good in five years”. He started back in school after missing the entire first quarter, and did extremely well, even making the high school basketball team. Then, just last week he went back into another episode. I do have to say it hasn’t been as severe, and I’m hopeful it won’t last as long. ( His norm is frequent episodes - The five month long one was NOT typical at all).

New mom dealing with her son’s KLS episode

2009-06-18T07:17:05Z

Hello everyone, my name is Ieesha Anderson and my son was diagnosed with KLS in March. He is 10 yrs old. I am a single mom and pretty much has to deal with this all alone. I really need the support from other mothers on how to cope and deal with this.

Salvia divinorum

2009-09-15T12:52:29Z

This is awkward to share but I feel that I should. About a year ago, I was in the grip of a particularly poorly timed episode and I was desperate to make it go away. I tried everything I could think of caffeine pills, energy drinks, anxiety pills, depression pills unsurprisingly nothing worked. Then for some reason I thought of Salvia divinorum. I can’t tell you why I thought of it perhaps it had to do with the brief period of derealization/hallucinations that is similar to my experience of KLS. Or maybe it was the feeling as if my mind was rebooted after using it. (I had only used salvia 2x in my life until that point and although I owned some for a over a year I had no interest in consuming it, but again, I was desperate). Anyway I took some, and I got better within an hour. I thought the recovery was linked to the salvia but I did not know if it could have been a coincidence so I didn’t share the story at that time.
Since then I have had two episodes both ended within an hour of consuming salvia. I no longer think this is a coincidence, however I am not recommending anyone go out there and try without very serious consideration. Salvia can make you hallucinate it will have some sort of psychoactive effect it could be very very bad!!!! Nevertheless, it worked so fast I think the experience should be shared.
I did some research and it seems salvia is a “kappa opioid agonists” (I do not know what this means). Professor Bryan L. Roth, director of the National Institute on Mental Health’s Psychoactive Drug Screening Program, thinks this could have potential uses in treating “Alzheimer’s, depression, schizophrenia, chronic pain.” And many users report an anti-depressant-like effect. Nobody has ever died from using salvia and there is no evidence of toxicity in animal studies. There is also some evidence that it lowers dopamine levels. See http://www.springerlink.com/content/2e2e65wvctqbenvl/. (I AM NOT A DOCTOR I DO NOT KNOW WHAT ANY OF THIS MEDICAL STUFF MEANS – THIS IS NOT MEDICAL ADVICE)
My experience with salvia is that after the brief effects of consumption wear off (lasting no more than 30 minutes) I feel completely better. I am a little warm, euphoric, and have energy). Unfortunately doing this at night makes sleep difficult (but as you know that is a welcomed reprieve).
I am writing this with the hope that one of three things may occur (1) a research reads this and thinks the issue is worth examining, (2) a adult KLS suffer who has used salvia divinorum in the past might consider being a lab rat and reporting on the results… (AGAIN, I AM NOT A DOCTOR, I AM NOT A RESEARCHER, I CANNOT TELL YOU WHAT EFFECT THIS MIGHT HAVE ON YOU – IMAGINE THE WORST!!!) or (3) somebody out there may have had the same crazy idea (and it was CRAZY) and has similar (or dissimilar) results.

If you have questions about what I did or what happened I am more than willing to answer them. If you comment in the post I will get back to you.

Best,
Caroline

Reminder – I think the fact that I chose to try this was stupid and likely a bad decision, nevertheless it worked for me. Just because it works for me does not mean it will work for you! Many KLS suffers receive relief by using different types of medicines. I am not promising you any results this might not work for you this might make you worse!!! I am not a doctor this is not medical advice. I am only sharing this because it worked for me and I hope that this might help others.

Has anyone taken Cytomel (Liothryronine) and had positive results?

2009-01-05T19:09:23Z

Given the cyclical nature of KLS episodes it is often difficult to assess if any medications or even changes in behavior are having a positive impact or if a person’s episode(s) just ended as part of the normal course.

Recently we have heard of certain patients who have been using Cytomel (Liothryronine) and beleive it has been having a positive impact

The Foundation does not advocate the use of any specific drugs in the treatment of KLS and recommends that you seek the advice of your medical professional in using any medications.

However, the Foundation would be interested in collecting informal information regarding our members use of this drug and any results. Please feel free to post the result to the forum or to send an email directly to the Foundation.

Important Warning for taking Medications while in a KLS Episode

2008-07-07T15:21:57Z

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