Kleine Levin syndrome

Hello all<br />
<br />
Don't give up hope as we still continue to have some of the same issues. You will need to do a lot of research and practice a lot of patience and pray fervently. <br />
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It's not your fault and it's not his fault. It's embracing this and not letting it defeat you. Find joy when you can. As I said before I honestly believe all of these disorders are related and not any specific diagnosis is exact. It is getting more manageable with age. <br />
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Blessings to you and your family. Don't give up hope! <br />
<br />
Brett Arsta<br />

Welcome to Connect, @davidwhitehurstbrown. Thank you for posting the references. Do you or a family member have Kleine-Levin syndrome?

Thanks for your note of welcome. Kleine-Levin syndrome does not affect me or a close family member. In my 1993 publication "Abnormal fluctuations of acetylcholine and serotonin" (Medical Hypotheses vol. 40, pp. 309–310, I speculated that prolonged low levels of acetylcholine within the mammalian brain might be correlated with KLS symptoms. My speculations might be relevant to the Crick-Mitchison theory of REM sleep.

Abnormal regulation of leptin, orexin, and/or ghrelin might cause, or be correlated with, some of the symptoms of Kleine-Levin syndrome (KLS). Injections of the orexin-1 receptor antagonist SB-334867 might be a plausible therapy for KLS.
https://en.wikipedia.org/wiki/SB-334867
https://en.wikipedia.org/wiki/Orexin
http://press.endocrine.org/doi/abs/10.1210/jc.2004-1003 Spiegel, K., Leproult, R., L’Hermite-Balériaux, M., Copinschi, G., Penev, P. D., & Van Cauter, E. (2004). Leptin levels are dependent on sleep duration: relationships with sympathovagal balance, carbohydrate regulation, cortisol, and thyrotropin. The Journal of clinical endocrinology & metabolism, 89(11), 5762-5771.

Acetylcholinesterase inhibitors (such as tacrine) might be a plausible experimental therapy for some cases of KLS.
NMDA receptor antagonists (such as memantine) might be a plausible experimental therapy for some cases of KLS.
https://en.wikipedia.org/wiki/Alzheimer%27s_disease#Medications
http://neuro.psychiatryonline.org/doi/full/10.1176/appi.neuropsych.13050110 U. K. Rout, M. S. Michener, & D. M. Dhossche. "GAD65 Autoantibodies in Kleine-Levin Syndrome." The Journal of neuropsychiatry and clinical neurosciences 26, no. 2 (2014): E49-E51.
http://www.neurology.org/content/59/11/1739.short Y. G. Dauvilliers, Y., G. Mayer, et al. "Kleine-Levin syndrome An autoimmune hypothesis based on clinical and genetic analyses." Neurology 59, no. 11 (2002): 1739-1745.
“Testosterone is a vasoactive hormone that predominantly has vasodilatory actions on several vascular beds, although some studies have reported conflicting effects.”
http://joe.endocrinology-journals.org/content/217/3/R47.short D. M. Kelly & T. H. Jones. "Testosterone: a vascular hormone in health and disease." Journal of Endocrinology 217, no. 3 (2013): R47-R71.
If some cases of KLS result from an autoimmune disease, then the damage induced by autoantibodies crossing the blood-brain barrier might increase in adolescence because of the vasodilation caused by testosterone.

According to a 2015 KLS review by Arnulf (presenting evidence published by Laval, Ann Neurology, 2015):
“Lithium therapy
• Complete responders: 36.6% 
 • Partial responders: 51% 
 • Non responders: 12.4% 
 • 9.8% had « mini-episodes » (1 day) on lithium 
 • 13 patients had an episode after stopping lithium 2 consecutive nights 
 • Level IV evidence of benefit in KLS 
 • Lithium : 1 month less in episode per year 
 • The level should be high and monitored”
http://klsfoundation.org/wp-content/uploads/2015/12/Kleine-Levin-Syndrome-Update-2015-Professor-Isabelle-Arnulf-PhD-MD.pdf
According to a 2014 KLS review by Miglis and Guilleminault:
“… Although an autoimmune mechanism has been suggested, there are likely heterogeneous factors at play in certain susceptible individuals. When combined with a precipitating event such as a minor infection, a transient multifocal encephalopathy ensues. It has been proposed that such a precipitating event may lead to transient permeability of the blood–brain barrier, thus predisposing these individuals to recurrent events. An animal model would add much to the understanding of the underlying pathophysiology. This is yet to be developed and should be considered in future research. …”
http://klsfoundation.org/wp-content/uploads/2013/02/2014-KLS-Article.pdf
In Table 4 on page 2771 there is a list of attempted treatments for KLS:
http://brain.oxfordjournals.org/content/128/12/2763.full I. Arnulf, J. M. Zeitzer, et al. "Kleine–Levin syndrome: a systematic review of 186 cases in the literature." Brain 128, no. 12 (2005): 2763-2776.

I was diagnosed in 1972. At that time it was extremely rare. My parents were worried beyond belief. Symptoms lasted through 1976. In the event that anyone needs some support from someone who lived through this condition (parents or patients) please feel free to contact me.

Hello @mbondula and welcome to Connect. It is good of you to join this discussion group and to offer information about your experience with Kleine–Levin syndrome.

If you are comfortable doing so, would you like to share with other members on Connect a little bit about your experience? For example, at what age was this diagnosed? How was it treated? Do you know why the symptoms left?

I look forward to hearing from you again.