KLS Foundation Discussion Forum

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

2009-01-05T19:09:23-08:00

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.

Sleep Episodes

2010-08-31T05:02:19-08:00

Hello .
Can someone tell me their sleep cycles ? My sons are every 5 to 6 weeks. He has recently been diagonsed KLS in Jan. of 2010
Thanks Ann

Salvia divinorum

2009-09-15T12:52:29-08:00

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.

Where Are You From?

2008-04-26T09:34:47-08:00

My name’s Alanna. I suffer from KLS and have had it for 5-6 years. I live in Seattle, Washington!

Conference Survey

2010-08-22T15:20:54-08:00

There is a link to a survey on the conference information page. You can click on the link below. Thank you for your feedback as it will help us to taylor the information provided at the conference more effectively.

http://www.surveymonkey.com/s/SDXKRZ9

KLS Foundation’s First International Conference

2010-08-18T21:03:28-08:00

The KLS Foundation is pleased to invite anyone impacted by or interested in learning more about Kleine Levin Syndrome (KLS) to attend the KLS Foundation’s First International Conference for KLS in San Francisco, CA, USA on August 12-14, 2011. The three-day program is designed for medical professionals, people with KLS, their families and friends and will include an update on KLS research, discussions on dealing with KLS from various perspectives and the opportunity meet other families living with KLS. We hope that this meeting will bring together people living with KLS to be able to share their experiences.

See the KLS Foundation Home page for a link to more information and registration

KLS on Health Discovery Channel’s “Mystery ER” on August 8th and 9th

2008-07-25T15:26:56-08:00

Be sure to watch the dramatization of the real-life story of one of our KLS families who live in Simi Valley, near Los Angeles, CA. It will feature Brian and his mom, Cindy who is a nurse. It will air on Aug 8 at 10 p.m.(EST) and Aug 9 at 1 a.m. (EST). Check your local listings for when it airs
in your area. IMPORTANT NOTE!!!!!!! Brian Kime has a pre-existing condition regarding low blood pressure. Please be sure to know that low blood pressure IS NOT an ailment of KLS!!!

Ritilin & Ephedra

2010-08-18T07:49:36-08:00

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

2010-08-11T18:32:11-08:00

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

I’m a 44 year old single mother of two. It’s not easy finding information on Adults with KLS

2010-08-10T21:23:23-08:00

I’ve watched many videos on KLS, YouTube, here and read many articles but they are all on teens. I need more info on adults. This disorder has taken so much of my life away. I’m depressed most of the time during episodes that can last months (not every day but most days) and I’m not there for my kids, I’m broke and almost at bankruptcy and am gaining so much weight I don’t want anyone to see me. I’m coming to the end of intermittent episodes that have been going on since February and now it’s August. I need my life back. Why isn’t there more info on adults?