KLS Foundation Discussion Forum

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.

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.

Ritilin & Ephedra

2010-08-18T07:49:36Z

Until I was diagnosed I would take Ephedra which is over the counter, natural speed. It’s been outlawed in some states but is available in Washington state again. It’s frowned upon due to heart issues, palpatations, etc. I took it for years as a diet aid before they removed it from stores so I knew I responded to it ok so used it on days I had to get up and get stuff done. It works very effectively but can’t sleep that night. My dr asked me not to take it as she can’t control the dosage and put me on Ritilin. I don’t get much energy at all with Ritilin, feel good for a couple minutes and then icky. If I’m going into an episode, I get exptremely grumpy and feel horrible on Ritilin. Going to Dr today to discuss alternatives. I’ll see what she has to say but I’m going to mention Cytomel as I’m seeing some good notes on that. If you choose to use the Ephedra for those days you absolutely have to be awake as I do, research it first as it’s strong and frowned upon by most Dr.s.

steroid treatment

2010-08-11T18:32:11Z

My son was recently diagonosed with KLS. he started out having a positive test for MONO. I took him to the Er and they started him on a Medrol steroid pack . With in a few hours of giving him his first dose through his IV he was awake for the first time in days. He continued on a decreasing dosage of steroids and was fine. When he finished his steroids he went back to sleeping. Has any one else used steroids ? He went on another decreasing dosage of Medrol Steroids and he came out of it. Each time he came off the steroids he started sleeeping. I took him to an Infectious disease dr. she blamed it on the steroid use. We weaned him off . This is before we learned he had KLS. He has episodes every 6 weeks almost to the day. I can count it on the calender.
Ann

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.

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.

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!!

Disibility

2009-09-09T06:34:19Z

Hello everyone, I was wondering if anyone of you receives disibility for their child who is currently dealing with KLS?

Tried hypnosis?

2010-03-01T02:54:32Z

Has anyone tried hypnosis pease? With what results? I’d be interested in hearing of any treatment which seems to have had a measure of success, however unlikely sounding or anecdotal. Thank you.

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).