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World Sleep Day: Battling the Symptoms of Idiopathic Hypersomnia

 

 

World Sleep Day, an annual event, is a call to action by delegates from around the world to raise awareness about the many burdens of sleep problems and their prevention and management. This year WSD falls on Friday, March 17, 2017, and the slogan is “Sleep Soundly, Nurture Life.”

While this slogan aligns with many sleep disorders that are modifiable and manageable with the help of a sleep specialist encouraging good health, exercise and proper diet, there is unfortunately a class of central disorders of hypersomnolence (CDH), including idiopathic hypersomnia (IH), that is especially complex and more difficult to diagnose and treat.

On this World Sleep Day 2017, the Hypersomnia Foundation is working to raise awareness about IH, a chronic and often debilitating neurologic disorder, by releasing a summary of a recent review article about CDH. This summary is intended to make current research about these disorders more accessible to the public, and it is part of an ongoing series of journal article summaries provided by the Hypersomnia Foundation to increase awareness of IH and the related CDH.

Read the Article Review Here!

In a society where feeling tired is the norm, it can be difficult to comprehend the devastating impact of a malady in part defined by excessive daytime sleepiness. For people with idiopathic hypersomnia, a full night’s slumber has no effect on easing the insatiable need to sleep. The associated severe sleep inertia and mental fogginess make it extremely difficult for people with IH to hold down jobs, remain in school, maintain marriages, and fully engage with their family and friends.

As one person with IH insightfully described it, “I am like a soldier on a daily mission; I fight to stay awake and alert, but I lose the battle and retreat to bed.” The Hypersomnia Foundation is working to help those with IH win more battles. Together, let’s get #beyondsleepy!

 

A Short Bio of the HF

The Hypersomnia Foundation, Inc. (HF), established in 2014 as a public nonprofit in the USA, received its IRS 501(c)3 determination letter that same year. As an all-volunteer organization, the HF uses 100% of donated funds to support its mission of improving the lives of people with idiopathic hypersomnia (IH) and related disorders by advocating on their behalf, providing support, educating the public and healthcare professionals, raising awareness, and funding research into effective treatments, better diagnostic tools, and, ultimately, cures for the debilitating conditions that comprise IH.

The reach of the HF is international, although the vast majority of our constituents are in the United States. Presently there is a serious unmet clinical need for people with hypersomnia (PWH). Not only are approved or even universally effective treatments not available, but lack of recognition that the symptoms of hypersomnia comprise a neurologic sleep disorder leads to a delay in diagnosis and years of needless suffering. As one prominent sleep researcher recently said, “People with hypersomnia are the most underserved population in the entire sleep community. They are veritable orphans, lacking even the most basic needs of recognition, let alone validated diagnostic tools and effective treatment.” The emotional, vocational and financial implications of the undiagnosed and untreated physical symptoms can have a disabling impact. The HF was established to address these issues.

HF core beliefs include the following:

• All PWH deserve full and proper diagnosis and treatment.
• Optimal diagnosis and treatment derive from better knowledge.
• All of the causes of hypersomnia can be discovered and properly treated.

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Article Review: Khan Z, Trotti LM. “Central Disorders of Hypersomnolence: Focus on the Narcolepsies and Idiopathic Hypersomnia.”

 

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This article reviews three central disorders of hypersomnolence (CDH), which include narcolepsy type 1, narcolepsy type 2, and idiopathic hypersomnia. The main symptom patients experience in all three of these disorders is excessive daytime sleepiness (EDS), which cannot be explained by other medical conditions or by not getting enough sleep.

Article: Khan Z, Trotti LM. “Central Disorders of Hypersomnolence: Focus on the Narcolepsies and Idiopathic Hypersomnia.” Chest. 2015 Jul;148(1):262-73. doi: 10.1378/chest.14-1304.
Link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4694150/pdf/chest_148_1_262.pdf
Note: Terms in italics are defined in the glossary below.

 

Symptoms (See Table)

Even though the names for narcolepsy type 1 and narcolepsy type 2 sound similar, they are now thought to be quite different disorders. Narcolepsy types 1 and 2, as well as idiopathic hypersomnia, show overlapping symptoms. Nearly all patients with narcolepsy type 1 experience cataplexy (the sudden loss of muscle tone in response to a strong emotion, often when hearing or saying something funny). These patients have difficulty with not only staying awake during the day but also with staying asleep during the night. It is also very common for patients with narcolepsy type 1 to experience sleep paralysis and hallucinations.

On the other hand, patients with narcolepsy type 2 do not experience cataplexy, but also have difficulty with daytime wakefulness. Just as in narcolepsy type 1, it is also common for patients with narcolepsy type 2 to experience sleep paralysis and hallucinations.

Patients with idiopathic hypersomnia have difficulty with daytime wakefulness, and they do not experience cataplexy.  Conversely, to narcolepsy type 1, patients with idiopathic hypersomnia do not have problems with staying asleep during the night and only sometimes experience sleep paralysis and hallucinations. They also commonly experience sleep drunkenness.

 

Prevalence and Pathophysiology (Contributing Factors)

The prevalence of narcolepsy type 1 is 0.025-0.05% of the world’s population, whereas the prevalence of idiopathic hypersomnia is not presently known. Both narcolepsy and idiopathic hypersomnia usually first occur when patients are in their teens to 30s.

Patients with narcolepsy type 1 have low levels of hypocretin (also called orexin). Hypocretin is a substance produced in the brain that is involved in regulating many processes, including sleep, feeding, stress response, and reward. These low hypocretin levels are probably due to both environmental exposure and inherited genetic factors. Getting an infection may also cause narcolepsy to develop. For example, narcolepsy became three times more common in China after an outbreak of the H1N1 flu virus.

Although several studies have investigated factors that may contribute to the development of narcolepsy type 2 and idiopathic hypersomnia, it is currently unknown whether environmental exposures or genetic factors contribute to these disorders.

 

Diagnosis

Three months of EDS symptoms are necessary for a diagnosis of all three central disorders of hypersomnolence. For narcolepsy type 1 to be diagnosed, the patient must show either or both of the following: (1) they must have cataplexy, fall asleep in an average of eight minutes or less during naps on a daytime sleep study (MSLT), and enter into rapid eye movement (REM) sleep for at least two out of five naps during this sleep study, and/or (2) have low hypocretin levels.

For narcolepsy type 2 to be diagnosed, patients must also fall asleep in an average of eight minutes or less and enter into rapid eye movement (REM) sleep for at least two out of five naps during the MSLT. They must also not have cataplexy, have normal (or unknown) hypocretin levels, and their symptoms must not be explained by any other causes.

For the diagnosis of idiopathic hypersomnia to be made, patients must not have cataplexy, must enter into REM sleep fewer than two out of five naps during the MSLT, and their symptoms must not be explained by any other causes. Additionally, they also must show either or both of the following: (1) they must fall asleep in an average of eight minutes or less during the MSLT, and/or (2) they must sleep at least 660 minutes (11 hours) per day (either in a 24 hours sleep study or in a week of at-home monitoring).

 

Treatment and Conclusions

The main goal of treating patients with all three central disorders of hypersomnolence (narcolepsy types 1 and 2 and idiopathic hypersomnia) is to relieve EDS. There are several medications approved by the US Food and Drug Administration (FDA) to treat narcolepsy. There are none, however, approved by the FDA to treat idiopathic hypersomnia, so the medications approved for narcolepsy are often used “off-label” to treat these patients.

One of these medications, modafinil, has been shown to help patients with idiopathic hypersomnia. Modafinil is unlikely to be abused, but it can cause several unpleasant side effects, like headaches and nausea. Other medications used to treat the central disorders of hypersomnolence include amphetamine stimulants, such as methylphenidate (Ritalin) and dextroamphetamine. These can also help decrease EDS, but they have associated cardiovascular and psychiatric side effects. Several other medications are also used to treat the central disorders of hypersomnolence (including sodium oxybate and antidepressants), and other new therapies are currently being developed.

Further studies are necessary to develop better diagnostic tests and treatment, especially for patients who do not respond well to medication. Additional research is also important to better understand the underlying causes of these disorders.

 

Glossary:

Excessive Daytime Sleepiness (EDS): ““The inability to stay awake and alert during major waking episodes of the day, resulting in periods of irrepressible need for sleep or unintended lapses into drowsiness or sleep.” (1)

Sleep drunkenness: “A prolonged state after awakening in which motor functions return before full awareness or there is partial return of both.” (1)

Rapid eye movement (REM) sleep: “One of the four stages of sleep. During REM sleep, the eyes move rapidly while closed and dreams occur (2).”

MSLT: The multiple sleep latency test (MSLT) measures how quickly you fall asleep in a quiet environment during the day. The MSLT typically consists of five scheduled naps, each nap opportunity lasting 20 minutes, separated by two-hour breaks. During each of the nap opportunities, you lie in bed in a darkened quiet room and try to go to sleep. The time that it takes you to fall asleep is called the sleep latency. You will be allowed to sleep for a maximum of 15 minutes during each opportunity (You will be awakened if you don’t wake up on your own). If you do not fall asleep within 20 minutes, the nap trial will end.

References:

American Academy of Sleep Medicine. International classification of sleep disorders: diagnostic and coding manual. 3rd ed. Westchester, IL: American Academy of Sleep Medicine; 2014.)

  1. https://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0023519/

 

 

 

 

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Rare Disease Day: Research Brings Hope – My CoRDS Experience

Research Brings Hope – My CoRDS Experience

On February 28, 2017, the Hypersomnia Foundation (HF) joins with all those participating in Rare Disease Day supporting the slogan, “Research Brings Hope to People Living with a Rare Disease.”

On Rare Disease Day, through social media and our SomnusNooze newsletter, the HF once again encourages the entire hypersomnia community, including anyone with a central disorder of hypersomnolence (idiopathic hypersomnia, narcolepsy type 1, narcolepsy type 2, and Kleine-Levin syndrome), to help us get #BeyondSleepy by registering and completing the CoRDS registries. This is also a perfect opportunity for those who have already completed the registry to consider reviewing and updating their information if needed.

“When the CoRDS Hypersomnia Foundation patient registry debuted last year, I was incredibly excited about the opportunity to personally contribute to primary hypersomnia research. As a person with Idiopathic Hypersomnia, my energy, especially my cognitive energy, is extremely limited. This can make tasks like filling out a registry database quite difficult. However, it’s exactly the severity of my symptoms and the lack of effective treatments for and knowledge about the primary hypersomnias that make this registry so necessary.

Thankfully, the registry is set up so that you can easily complete it in small pieces, taking breaks whenever you need. You can even skip questions and come back to them later (just make sure you note the question number). Check out more helpful tips and FAQ at http://www.hypersomniafoundation.org/registry/.

I strongly encourage every single person with Narcolepsy, KLS, and Idiopathic Hypersomnia to push through their brain fog/sleepiness/exhaustion and prioritize contributing to this critically important database. Together we can dramatically increase knowledge of and treatment options for these devastating illnesses.”

Michelle E.

CoRDS is a centralized international patient registry for all rare diseases and has partnered with the NIH’s GRDR (Global Rare Disease Registry) program: https://ncats.nih.gov/grdr/partners.

For researchers to make advances in understanding and treatment of hypersomnia disorders, they need data. By completing the registry questionnaire, you are making a very valuable contribution to this cause. Learn more about the registry and how to sign up here:
http://www.hypersomniafoundation.org/registry/

People who have completed the registry also have this to say about their experience:

“In preparation for completing the Hypersomnia registry survey with CoRDS, I gathered as many of my medical history documents as possible. I reviewed these documents thoroughly, so that I knew what information I had and where it could be found before beginning the survey. I found this to be incredibly helpful. The survey is a bit lengthy, so being organized and understanding my personal data beforehand allowed me to complete the questions without becoming overwhelmed. Participating in this registry is an easy and effective way for all of us to contribute valuable information for the advancement of research on Hypersomnia.”
Amy H.

“I signed up with CoRDS and did the hypersomnia registry because I knew it was important to get my information out there for the doctors and researchers who are working on finding a treatment for this horrible disease. It only took a few minutes to register, but the survey itself took quite a bit of concentration that is difficult for someone with IH. I filled it out in little bits and whenever I felt I had enough energy I would go back to fill out a few more questions. I hope that my info will help in some way. If it does, then the time and energy was worth it!”
Dustin H.

If you have any questions, difficulties, or concerns while completing the CoRDS registries, please feel free to contact them at cords@sanfordhealth.org or call 877-658-9192.

If you have completed the CoRDS registries and want to share your experiences and advice with others, you can send them to us at: http://www.hypersomniafoundation.org/understanding-hypersomnia/share-your-journey/.

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The Hypersomnia Foundation Joins the #GivingTuesday Movement with #beyondsleepy campaign

The Hypersomnia Foundation Joins the #GivingTuesday Movement with #beyondsleepy campaign

Press Release November 29, 2016 – Today The Hypersomnia Foundation, Inc., the leading hypersomnia advocacy and awareness non-profit, joins #GivingTuesday, a global day of giving that harnesses the collective power of individuals, communities and organizations to encourage philanthropy and to celebrate generosity worldwide. The Hypersomnia Foundation is joining the #GivingTuesday movement to raise awareness and monies for research that will be restricted to study Idiopathic Hypersomnia (IH), a rare, chronic neurological disorder that causes an insatiable need to sleep that is not eased by a full night’s slumber, as part of the Let’s get #beyondsleepy campaign.

In a society where feeling tired is the norm, it can be difficult to comprehend the devastating impact of the disorder, which causes sleep inertia (extreme difficulty making the transition from sleep to waking), and mental fogginess even during the few hours a day people with IH can remain awake. Many with the disorder sleep up to 11 hours out of 24. The relentless nature of the disorder makes it extremely challenging for people with IH to hold down jobs, remain in school, maintain marriages and fully engage with their family and friends. Hence this year’s call to action: Let’s Get #beyondsleepy

“We are pleased to offer this opportunity to our supporters so that they can help in the quest to understand IH more fully,” said Cate Murray, CEO of the Hypersomnia Foundation. “We understand the struggle that individuals and their families are going through living with this little-known and devastating disorder and how crucial future research is to them.”

Why raise awareness of and restricted funds for research for Idiopathic Hypersomnia (IH)?  

  1. We don’t know how many people have Idiopathic Hypersomnia (IH) which is vital for scientists to apply for grants and encourage pharmaceutical companies to study IH. The first step towards having this number is building awareness of the disorder. 
  2. We don’t have a biomarker, a substance in the body, such as blood or spinal fluid that can tell us whether or not a person has IH – making further research imperatives.
  3. The tests that we do have are often inaccurate and repeating them is very expensive. 
  4. There is no FDA approved treatment. While wakefulness-promoting medications are sometimes prescribed, ”off-label”, these medications don’t work well for everyone and they may also stop working overtime and/or have bothersome side effects.

Get involved and learn more at http://www.hypersomniafoundation.org/2016givingseason/  Share Let’s Get #beyondsleepy on Social Media on #GivingTuesday, November 29, 2016 and throughout the giving season.

About Hypersomnia Foundation 

The Hypersomnia Foundation, Inc. strives to improve the lives of people with idiopathic hypersomnia and related disorders by advocating on their behalf, providing support, educating the public and healthcare professionals, raising awareness, and funding research into effective treatments, better diagnostic tools, and, ultimately, a cure for these debilitating conditions.

To find out more about IH and related disorders, please visit http://www.hypersomniafoundation.org/or follow us on Twitter at or on Facebook.

About #GivingTuesday 

#GivingTuesday is a movement to celebrate and provide incentives to give—the 2016 iteration will be held on November 29, 2016. This effort harnesses the collective power of a unique blend of partners—nonprofits, businesses and corporations, as well as families and individuals—to transform how people think about, talk about and participate in the giving season. #GivingTuesday inspires people to take collaborative action to improve their local communities, give back in better, smarter ways to the charities and causes they celebrate and help create a better world. #GivingTuesday harnesses the power of social media to create a global moment dedicated to giving around the world.

 

For more information, please contact:  

Diane Powell, Board of Directors
Hypersomnia Foundation, Inc.
diane@hypersomniafoundation.org
267-629-9250

 

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