KLS Foundation Discussion Forum

Episodes Without Prolonged Sleeping

2010-05-17T13:53:10Z

Can you be in an extended episode without the many weeks of the sleeping phase. An example my son gets very irritability, lack of concentration. During his episodes he always gets headaches and his eyes hurt. He will always have different events with his episodes such as stomach pains, numbness to his hands, dizziness and currently he breaks out in a rash hive like, red burning rash for no reason. He seems to be in an episode without the deep sleep phase. He spends weekends sleeping, nights sleeping. In the sleeping phase he will usually sleep 2 weeks to 12 weeks sometimes longer. One other point during his episodes he would frequently break up with his then girlfriend of course not remembering when he awakens. Currently he is thinking and saying he doesn’t want to be with her, his now wife. We question him if he could be in an episode with a response “I don’t know.” I would appreciate any input, not knowing where to get any answers.

Doctors in Illinois

2009-02-12T19:04:17Z

Someone emailed the Foundation looking for a doctor familiar with KLS who is in Illinois. Does anyone have a name for her?

Seeking doctor in Oregon to diagnose KLS

2010-05-06T15:45:00Z

A family in Oregon contacted the Foundation. They are looking for a doctor in Oregon to diagnose their daughter. You can reply here or send an email to hampypayne at gmail dot com. Thanks, The Foundation

Medical hypnotherapy

2010-03-01T02:09:06Z

Has anyone tried either medical hypnotherapy or self-hypnosis as a way to ward off bouts of hypersomnia please? With what results? I would be interested in hearing of any treatment which seems to have had a measure of success, however unlikely sounding or anecdotal. Thank you.

Hemochromatosis (or in UK, haemochromatosis) any possible link?

2010-03-01T02:06:46Z

My 18 year old daughter has symptoms of KLS and has 5 or episodes lasting from 10 days to 3 weeks in the last two years . Having had brain scan and blood tests which have proved negative for every other possible cause of her hypersomnia and so ruled them out, I am interested to know if anyone has suggested or looked at a possible connection between KLS and iron overload, or genetic hemochromatosis? I have the condition (as did my father and both sisters have it), my husband must be a carrier as my daughter has two genes and, when her first episode of KLS occurred (it was severe, lasted about 3 weeks and looked like a possible adrenal problem at the time), we discovered her iron levels were high for a girl her age - 300+ ferritin and 85% saturation. She has since begun regular venesections but, though her iron has returned to normal levels for a young woman (40, 55%), she continues with bouts of (less severe) hypersomnia. Before she was diagnosed with HH (GH) she seemed to catch anything bacterial that was going (mesenteric enteritis; UTIs) but not specifically viral ones, though she did start her first sleeping episode with flu-like symptoms.
As there seems to be no other successful treatment, I am looking at medical hypnotherapy as a possible way to go. I shall start a separate thread on this but would be grateful for any observations on either issue. Thank you.

Default Mode Network and Brain Mapping

2009-08-03T06:55:50Z

There is clearly a lot of research occuring regarding the brain and its networks. Although this research would seem to be important for the study of KLS, I am wondering if Stanford or other major teaching/research facilities are participating? If not, why not? Is research far enough along that it would have any information for persons and families who are managing KLS?

Is there any neurological link between being mute during KLS episodes and being mute within the diagnosis of autism? Do stimulants work on both?

2008-05-14T12:48:29Z

It would be of interest to know which symptoms in KLS overlap or connect to symptoms in other mystery diseases of the brain.

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2007-08-09T21:58:29Z

Head trauma and post-tramatic stress syndrome

2008-05-14T19:36:37Z

With so many brain injured soldiers returning from Iraq and Afganistan, are drs. seeing symptoms of KLS within the diagnosis of PTS or at least along side of it. If not, why not? Are the symptoms of PTS such as nightmares and hallucinations actually part of a KLS-type injury to the hypothalmus? What kind of treatment is the VA following with their PTS patients? Is there anything in the protocol that KLS reporters could use? What about medication prescribed by VA docs? Rehabilitation?