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.

Disibility

2009-09-09T06:34:19-08:00

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

Tried hypnosis?

2010-03-01T02:54:32-08:00

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

2010-03-02T21:45:52-08:00

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).

antibiotics to treat KLS

2009-09-25T13:25:25-08:00

Hi,

My son had gone 8 months last year without an episode and I’m thinking back and realize that this lapse in episodes coincides with the time he was on an assortment of antibiotics for acne. I’m wondering if anyone knows if antibiotics are used to “treat” KLS…or if anyone else notices a pattern where episodes stopped while taking them.

Thanks!

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.

New mom dealing with her son’s KLS episode

2009-06-18T07:17:05-08:00

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.

Serotonin

2009-08-04T19:33:00-08:00

I am sharing this link http://www.causeof.org/sis.htm#Effects (i hope it works) and am very curious if anyone has information or experience about serotonin and its effect of the brain? This information, and more that I have become aware of, suggest that low levels can cause many of the symptoms of KLS.

Vitamin D

2008-10-14T14:04:24-08:00

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.

What Medications - Treatments have worked?

2008-12-25T23:28:03-08:00

As I have read in many other posts, what may work for one person, may not work for others - but I thought it may be helpful if we shared what medications or treatments which have been beneficial for us.

I have been taking Lithium and Provigil on a daily basis for a couple years. Over a period of time, I have mildly increased the dosages. Taking this meidication on a steady, regular basis, regardless of being in an episode or not, has definetely reduced the frequency and severity of my attacks. Not a cure, but an improvement. Sometimes, when an attack is starting to end, I will take Ritalin. Sometimes this is helpful, but not always. I am a 46 year old male (suffered from KLS for 6 years so far) - which is not typical for many of those with this condition, so I am not sure if this regimen would be appropriate for others.

Anyone else have any success with medications or other treatments?