New Treatment for ‘Sleeping Beauty’ Syndrome?

Primary hypersomnia—'Sleeping Beauty Syndrome' — causes excessive daytime sleepiness, disorientation and inattention

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Most of us have experienced it:  that dull, dragging semi-conscious state of deadened awareness and desperate urge to nap that comes from sleep deprivation.  For people with primary hypersomnia, however, this is the way they go through life, constantly feeling only half-awake but never able to get enough good sleep to arise truly refreshed.  Also known as “Sleeping Beauty Syndrome,” the condition leaves those with the worst cases languishing in bed in what seems like the opposite of a fairy tale, without a prince’s kiss to cure them.

But a new study, published in Science Translational Medicine, suggests both a possible cause and a potential treatment for the condition, which may ultimately lead to treatments for other sleep disorders.  The origin of primary hypersomnia, which has some genetic components is still unknown, as is the number of people who are affected by it.

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One particularly striking form of the disease, Kleine-Levin syndrome, produces such tiredness and sleep-drunkenness that people are unable to attend school or work.  In males, it can include hypersexual behavior, compulsive masturbation, a desire for promiscuous sex or making inappropriate sexual advances, all while in a sleepy, semi-conscious state.

In the latest study, researchers led by David Rye of Emory University in Atlanta studied 10 men and 22 women seeking treatment for primary hypersomnia.  In the patients’ spinal fluid, the scientists discovered a previously uncharacterized chemical that stimulates the GABA-A receptor.  This receptor is best known as the site where sleep-inducing drugs like Valium and Xanax have their effects, since activating GABA-A receptors can result in drowsiness.

The finding suggested a possible treatment. A drug, known as flumanezil can treat Valium and Xanax overdoses or to reverse the effects of related compounds used in anesthesia. Could it block or reverse the effects of the unknown agent that was activating GABA-A receptors in primary hypersomnia?

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The authors conducted a brief placebo controlled trial with seven patients—including one with Kleine-Levin symptoms — to find out. Indeed, injections of flumanezil improved the participants’ ability to pay attention and remain alert.  One participant has now taken the drug daily for four years.  “Although her nightly sleep duration remained at 9 to 10 hours, she nearly always awakened refreshed without an alarm and daytime sleepiness was markedly reduced,” the researchers write.

Further research is needed to see whether flumanezeil or a similar drug can be an effective treatment for primary hypersomnia.  And more studies are needed to understand the chemical in these patients that is influencing the GABA-A receptors in the first place. Figuring out what it is and how it changes with normal sleep and wake cycles might also lead to the discovery of better drugs to treat not just “sleeping beauties” but abnormal sleepiness and insomnia as well.


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I have the same thing and I could write that I am at my wit’s end, but then again for the past up to 17 years I have held the status that I am a fighter, not willing to give up---not willing to go on disability---unless I have no other option. Well, now is that day. All I desire is to be fairly functional—at best hold a job and help others. I saw a website from Emory University, research completed by Dr. David Rye, which I thought could be another venue that I was pressed to explore. I began seeing Dr. Lynn Marie Trotti of Emory University back in November of 2013. She is directly affiliated with Dr. Rye, mentioned above. I have tried for the past nearly 20 years not to have to apply for disability but to work. Now, I cannot and do not foresee a future with me being able to work. I entered a sleep research study with Dr. Trotti at Emory with the hope, of finding a reason and a cure for my disability. To date, Dr. Trotti has not been able to offer either. I had spinal fluid removed from my spinal cord in November of 2013 to test for an unknown “somnogen” thought to cause people like me to have such a sleep disorder as mine. The test came back negative for that somnogen circulating in my spinal fluid. Had it been positive, there is a drug that probably could have helped me. It, of course, I believe is in experimental stages. She is going to put the drug into a petri dish of my spinal fluid next to see if there is any change or any indication to be able to give me a trial run with the drug flumenazil (sp?). As it stands, she is unable to try the drug on me and I have gone back to taking stimulants as I can tolerate them. She just prescribed me in August 2014 a new stimulant Vyvanse, reported to her to have less ill side effects. So far, all stimulants I have tried and I am sure it has been all of them, have not been tolerated. I have done my best all what is in my power to be functional even if just on a basic---take care of myself and hygiene level.  I married my third husband after two-three weeks of knowing him, May 24, 2011, because I believed I loved him and we both agreed for the sake of medical insurance after I was fired from TN DCS on May 18, 2014. Despite the warnings from my family and me to my husband---I don’t think he knew what he was getting himself into with the kind of care I needed. We both hoped for a cause and a cure but he was recently arrested for domestic violence (August 10th) on me and is incarcerated. I do know my condition played a major factor in the stress levels of our home. It has with all of my family whom I have had to live with over the years due to my sleep disorder. I wanted to be able to take of myself, but have to relinquish that idea for a while and today, I ask for help until I may once again be able to care for myself.    I don’t know if I have Kleine-Levin Syndrome, as previously diagnosed by pediatric neurologist/Assistant sleep doctor sleep specialist, Dr. Lawrence Chien-since retired, or Narcolepsy without cataplexy-as I believe is my present diagnosis from Dr. Vincent Viscomi affiliated with the sleep center at Memorial Hospital in Chattanooga, or something else. I feel that I have sort of have my own disorder, unique to me---because based on the criteria of other diagnoses—I do not fit exactly in any one category thus far. All I do know is that I have had this plaguing illness that no one has yet to explain or give me a definitive diagnosis that I can carry forward from doctor to doctor. I need help. Without help, I try to live day-to-day with the hope of help. I have now applied for both disability and SSI because I just have no other options anymore. PLEASE, PLEASE someone out there help me! Help me!!!