Hypersomnia Foundation

2015 Hypersomnia Conference Registration is Now Open!

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The 2015 Hypersomnia Conference Registration is now open.  Won’t you join us at this special event?

The 2015 Hypersomnia Foundation (HSF) conference to be held Friday July 17, 2015 – Saturday July 18, 2015 at the Emory Conference Center Hotel

1615 Clifton Road, NE

Atlanta, Georgia 30329

HSF is dedicated to educating, advocating, and resourcing so that people with Hypersomnia can live optimal and fulfilling lives.  The goal for this conference is to play a key role in helping people with Hypersomnia, their supporters, medical professionals, and scientists in the field increase their understanding of Hypersomnia.  The Conference provides the opportunity to learn about the latest in Hypersomnia research and treatments and offers a forum for discussion among professionals concerned with Hypersomnia.

For more information about the conference and to register to attend this special event, click here.

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The Hypersomnia Foundation’s 501 (c)(3) status has been approved!

We are so excited?! We have great news, and we want you to be the first to know. The Hypersomnia Foundation received a letter from the Internal Revenue Service stating that we have met all of the requirements to be a charitable organization. That’s right. The IRS has officially APPROVED the Hypersomnia Foundation’s 501(c)(3) status!  

Not only are we exempt from paying federal income tax, but contributions made to the Hypersomnia Foundation by individuals and corporations are deductible under Code section 170. You will want to check with your tax advisor, but, basically, this means that any donations made to the Hypersomnia Foundation on or after January 21, 2014, are tax deductible to the extent allowed by law.

See our recent Newsletter for more details

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The Hypersomnia Foundation has submitted our 501(c)(3)!

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Read our latest Newsletter by clicking on this link.



Topics included in this Newsletter include:

  • Our 501(c)(3) has been submitted
  • 2015 Hypersomnia Conference Announcement
  • The Hypersomnia Foundation’s current initiatives
  • Our social media links
  • 2014 Hypersomnia Conference DVD Order Form

Want to make sure you our next Newsletter comes to your inbox?  Subscribe to our Newsletter here.

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2014 Hypersomnia Conference DVD Set is Now Available to Order!

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Click HERE to order your 2014 Hypersomnia Conference DVD today!

On March 8, 2014, the first Hypersomnia Conference was held in Atlanta, Georgia.  Featured guest speakers included;

David Rye, MD, PhD, Professor of Neurology at Emory University
Lynn Marie Trotti, MD, MSc, Assistant Professor of Neurology
Andrew Jenkins, PhD, Associate Professor of Anesthesiology
Lloyd Johnson, Living with Hypersomnia Founder

This DVD was created for you by an all volunteer staff and includes a 3 disc set in a limited edition DVD case. The 3 disc set includes all 10 sessions from the 2014 Hypersomnia Conference. If you were able to attend the conference, this is a great way to experience it all over again. If you were not able to attend the conference, this is a great way to hear cutting edge information pertaining to underlying causes of and treatments for Hypersomnia.

DVD cost is $35.00 (per DVD set) plus $5.00 shipping in the US and $15.00 shipping outside of the US. Increased shipping charges may apply for those ordering multiple DVD’s.  100% of the proceeds from the DVD sales will go to the Hypersomnia Foundation.

After completing this form, you may expect an invoice to be emailed to you. This invoice will include your shipping charges. Once the invoice is paid (via PayPal or credit card), you will be placed in line for shipping.  Please allow 2 weeks for delivery.   There are a limited number of DVD sets available so be sure to support the Hypersomnia Foundation by ordering your copy today!

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Summary of Research into Clarithromycin as a Hypersomnia Treatment

GABA is known to promote sleep and decreased consciousness, and many patients with CNS hypersomnia have been found to have endogenous GABA-A receptor hyper-reactivity.  Flumazenil, a known GABA-A antagonist, has been shown to reduce symptoms in these patients, but its use may be impractical; therefore, other therapeutic options are sought. Clarithromycin, an antibiotic, is known to have neurological side effects and has recently been shown in vitro to be a GABA antagonist. The purpose of this retrospective review is to determine if clarithromycin can decrease the symptoms of GABA-A related hypersomnias, which are often refractory to currently available treatments.

The authors selected all the patients from their tertiary referral clinic who met DSM-IV criteria for narcolepsy or primary hypersomnia (excluding those with definite cataplexy and/or hypocretin deficiency), who had measured CSF GABA-A hyper-reactivity, and who had tried clarithromycin for their treatment-refractory hypersomnia.  They then reviewed the electronic medical record for patients’ subjective clinical improvement and psychomotor vigilance task (PVT) improvement while on clarithromycin.

Fifty-three patients met criteria for inclusion in this study: 72% female; mean age 35; 41 with primary hypersomnia (2 of these with KLS); and 12 with narcolepsy without cataplexy.  These patients had all undergone a 2-week trial period of clarithromyin 500-1000 mg with breakfast and with lunch, in which 64% had improved daytime sleepiness, 19% didn’t tolerate side effects (such as GI distress and bad taste), and 17% had no improvement. Of the patients who experienced improvement on clarithromycin, 68% chose to continue long-term treatment beyond the 2-week trial. Where PVT data was available for patients who had subjective improvement with clarithromycin, it showed a significant improvement in median reaction time while on clarithromycin.

The only significant differences between clarithromycin responders and non-responders were that responders where younger and that non-responders were on higher doses (because they didn’t respond to the starting dose).  No significant differences were found between the responders and non-responders in regards to the following: gender; BMI; diagnosis; weekly sleep hours; ESS (Epworth sleepiness score); number of failed medications; history of depression; GABA-A receptor hyper-reactivity; sleep study (PSG and MSLT) results; and monotherapy vs. combination therapy.

New treatment options are needed for the large percentage of treatment-refractory patients with hypersomnia. Of the study patients, 64% showed clinical improvement with clarithromycin, and 38% chose to continue regular clarithromycin use for their disease management.  Based on these results, use of clarithromycin should be considered for treatment-refractory hypersomnia associated with GABA-A receptor hyperreactivity.

The mechanism of clarithromycin’s beneficial effects in hypersomnia is not yet known.  Possibilities include its GABA-A receptor antagonism, its decreased production of sleep-inducing cytokines, and changes in bacterial gut flora.

Long-term use of clarithromycin does add risks such as antibiotic resistance and superinfection, so it is important to more clearly define the benefits of its use (via a randomized controlled trial, for example) and ensure they exceed the risks.  Another possible risk is cardiac; some studies have shown increased cardiac mortality with macrolide antibiotics like clarithromycin, while some have not. Drug tolerance may also develop, which may lead to decreased efficacy of the clarithromycin treatment.  Finally, clarithromycin inhibits and is metabolized by the cytochrome P450 enzymes; these enzymes are necessary for metabolism and clearance of many other drugs, so changes in their function by one drug often leads to interactions with other drugs.

Further Reading:
“Improvement in daytime sleepiness with clarithromycin in patients with GABA-related hypersomnia: Clinical experience.” by Lynn Marie Trotti, Prabhjyot Saini, Amanda A Freeman, Donald L Bliwise, Paul S García, Andrew Jenkins, and David B Rye

This article was written for the Hypersomnia Foundation by a volunteer medical writer.

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Idiopathic Hypersomnia Symposium at the World Association of Sleep Medicine Meeting

A symposium entitled, “Idiopathic Hypersomnia: Past, Present and Future,” and co-chaired by Drs. Michel Billiard (Montpellier, France) and Sona Nevsimalova (Charles University, Prague, Czech Republic), took place at the World Association of Sleep Medicine (WASM) biannual conference in Valencia, Spain, on October 2, 2013.

Approximately 130 conference participants attended the meeting, which touched on many relevant topics.

Dr. Billiard presented a historical overview of the disorder and its terminology, noting that the modern-day introduction of the term, hypersomnia, originated with the Czech physician Bedrich Roth, whose seminal works—including his classic 1980 text Narcolepsy and Hypersomnia (S. Karger; NY, NY)—included a description of 620 personally observed cases, 167 of whom suffered from idiopathic hypersomnia as it has come to be known.

Karel Sonka (Czech Republic), a student of Dr. Roth, then presented an analysis of symptoms in 96 patients whom he had seen between 1999 and 2009 to identify which “cluster” of signs or symptoms was most useful in distinguishing between the entities of idiopathic hypersomnia with long sleep time (IH+LST), IH without long sleep time (IH-LST), narcolepsy without cataplexy, and classic narcolepsy with cataplexy. He suggested that the entities of IH+LST and narcolepsy with cataplexy are most distinct from one another, whereas IH-LST and narcolepsy without cataplexy are more similar than different and may best be considered together. He concluded that more specific signs or symptoms are or, even better, a biomarker is sorely needed to accurately distinguish among these entities.

This presentation was followed by Dr. Seiji Nishino (Stanford University), who shared what is known about the neurobiology and neurochemistry of these disorders. He reviewed the well-known causal relationship between hypocretin deficiency and narcolepsy with cataplexy and his own work, suggesting a deficiency in the wake-promoting chemical histamine as a potential common link to each of these disorders. He also reviewed more recent data at odds with his own work that leaves the field in search of a common final pathway that might account for sleepiness and points to promising new and alternative treatments. Dr. Nishino also reviewed the recent findings from Emory suggesting that an excess in intrinsic GABA systems may underlie sleepiness in the primary hypersomnias.

Dr. Nevsimalova’s followed with a presentation entitled, “The genetic aspects of idiopathic hypersomnia,” which expanded upon her original work with Dr. Roth, suggesting that the disorder often exhibits a familial pattern in 30% to 50% of cases, and that, in most instances, the disorder is transmitted in an autosomal-dominant pattern. Although she discussed a single paper suggesting that this might evolve from genes traditionally thought to control the body’s internal clock, she failed to touch on one larger study, which suggests that an allele in a gene involved in carnitine metabolism (first implicated in narcolepsy with cataplexy)—was similarly fingered in other hypersomnic disorders. It was a bit disturbing to see her summary slide that once again parroted the field’s long-held belief that idiopathic hypersomnia is a “very rare disease,” all the more distressing considering that her mentor and collaborator, Bedrich Roth, specifically noted in his textbook that it was not a rare disorder, equating its commonality to as great as that of multiple sclerosis and narcolepsy (with cataplexy)!

The symposium finished with an excellent summary by Dr. Timothy Morgenthaler (Mayo Clinic, Rochester, MN) relating to treatment. Dr. Morgenthaler singled out one recent Japanese study that highlighted the disorder’s negative impact upon quality of life. Importantly, he pointed out that the collective literature was sorely lacking—amounting to a cumulative 9 papers in the entire world’s literature. He touched on several studies that highlighted generally favorable treatment outcomes with modafinil and some of the traditional psychostimulants (eg, amphetamine derivatives) but noted that, in at least one third of cases, these therapies were ineffective and that therapy with multiple drugs was therefore often needed. Finally, Dr. Morgenthaler touched on the promising new findings from Emory suggesting the potential efficacy of both clarithromycin and flumazenil.

It was great to see IH get much needed attention at the meeting of the World Association of Sleep Medicine. That being said, the symposium really highlighted how much is unknown and the large gaps in knowledge that still exist. Clearly, there is a compelling need to effectively communicate that a large unmet clinical need exists, as even these experts often fell short of accurately conveying what we all feel at ground level: namely, that IH and its extended family (ie, many labeled as suffering from narcolepsy without cataplexy) is a fairly common disorder that consumes its victims and is very often refractory to available treatments. We are challenged by a lot of education and discovery science yet to complete. Let’s get it done!

 This article was written for the Hypersomnia Foundation by Dr. David Rye.

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A Real-Life Sleeping Beauty

This episode of the Today Show, which originally aired on November 20, 2012, offers a glimpse into the sleep-filled life of Nicole Delien, a 17-year-old with Kleine-Levin syndrome, and provides an interview with the physician who diagnosed her disorder, Dr. Michael Rancurello.

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Emory Researchers Announce Discovery of Substance That May Be Linked to Excessive Sleeping

In a paper published in the November 21, 2012, edition of Science Translational Medicine, Dr. David Rye and a team of researchers from Emory University announced their discovery of a substance in the cerebrospinal fluid of 32 people with idiopathic hypersomnia that may be responsible for their relentless need to sleep. For now, the researchers are simply referring to this substance as a somnogen (or sleep-producing agent), which appears to heighten the effect of GABA when tested in the laboratory. Seven of the research subjects with idiopathic hypersomnia subsequently received flumazenil under experimental conditions and experienced normal levels of alertness.

 Rye DB, Bliwise DL, Parker K, et al. Modulation of vigilance in the primary hypersomnias by endogenous enhancement of GABAA receptors. Sci Transl Med. 2012 Nov 21;4(161):161ra151. The paper is available free of charge after registering on the AAAS web site.

 Greg Miller, science writer for AAAS, summarized the findings of the paper in ScienceNow in “Putting Themselves to Sleep.

 An Editor’s Summary of Dr. Rye’s paper, “Awake and Refreshed,” was published simultaneously in Science Translational Medicine.

The announcement of this groundbreaking work resulted in a great deal of media coverage in November 2012, some of which is linked below.

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