Hypersomnia Foundation

Archive for 'idiopathic hypersomna'

Wing Chun and Hypersomnia

Earlier this year, I experienced a minor miracle. After a full day of traveling and running errands, I was completely drained. The next day was a big event, and anxiety was eating at me. Would I wake up in time, would I have enough energy to be sociable, or would sleep take the reins yet again? I was faced with the option to go to sleep right then and wake up even earlier than I had planned or to get some stuff out of the way before sleep and get up as late as possible for the full day ahead. I knew that in a couple of moments my body would take any choice out of the equation, but I was still sitting upright out of sheer stubbornness and determination.

I did not have the energy to do much more than stand at that moment, but I had so much to do before I could let myself succumb to sleep. Taking another step seemed out of the question, but I could move my arms, so I started an exercise that had become a part of my daily routine. My hands followed a series of movements that comprise the beginning stages of learning Wing Chun Kung Fu, affectionately called the form, and it was not draining me like every other movement seemed to do, so I kept going.

Halfway through, my eyes opened in shock. It felt like I was waking up—not some metaphor or random realization—but actually waking up. By the time I finished, I wing_chun_single_chi_gerkwas in shock because I found that I had energy that was so distant just five minutes earlier. And for the next hour, I was able to do everything I had to in preparation for the next day. When I was done, I, not my body, was the one to make the decision to go to sleep.

The implications of what I had just experienced had my mind racing. As long as I had enough energy to stand up and start the form, I could build the energy to do more. There are still times when standing is a big ask, but I was never able to wake myself up before.

In the past, whenever my doctors would suggest exercise to help combat my tiredness, I would be so puzzled. How could I possibly think of doing anything high energy when I barely have enough energy to walk down the steps to feed myself, when I have to budget every movement in order to get anything done. The mere idea of exercise just seemed like a waste of the little precious energy that I had. But at the same time, I missed the feeling of being active like I had been in the years before hypersomnia hit me.

This past February, I reached a point where I got fed up with not feeling in control of my body. Sleep has taken so many hours from my life, and I never got a say in the matter. More than that, it didn’t let me make the most of the short time that I was awake because it was always there to pull me back under if I didn’t fight. I yearned for something, anything, to make me feel like I was in control again. I had no clue what to try—anything with cardio was out of the question.

Then I found the perfect fit by accident, or fate if you believe in that kind of thing. The movie Ip Man popped up on my “watch it again” list on Netflix, and I had just enough energy to watch a movie with subtitles. With all that had been going through my head recently, I watched this martial arts flick in a whole new light. Where before I saw a great movie with amazing action scenes, I now looked more closely at the man who was being portrayed at the center of it all. Throughout the movie, Ip Man was very tranquil and thoughtful, even in the midst of the fighting scenes, which ran counter to my interpretation of martial arts. A thought crept into my head: if he can do this while he is calm, maybe I can learn it while I am tired.

The end credits rolled, and I wrote down the style of martial arts that Ip Man practiced and taught. Wing Chun. There had to be something about the style that fostered such a temperament, one that so matched mine (albeit out of necessity at times). I immediately began to look for places in my area that taught Wing Chun… after I watched more Ip Man movies. When I visited the Wing Chun school, my suspicions were confirmed. It is a discipline that in its nature could make me feel more in control of my body, and I would be able to learn and practice it with as much or as little intensity as my energy level permitted.

When I started, I had no idea that it would translate to fueling me with energy so directly and so powerfully. My experience just two months in is a testament to how much Wing Chun is going to affect my life. As long as I have the energy to stand up and start the form, I will have the energy to do what I need to do and what I want to do. It is as if I have been walking through life thirsty in my own personal drought, rationing my energy because I had so precious little, and suddenly I have found the tools to tap into a rich well I didn’t know was beneath my feet. All because of Wing Chun!

It is my selfish hope that reading this will help you find the tools to tap into the same well of energy that I have. But no matter what, I wish you wakefulness.

Olivia Robbins, Maplewood, New Jersey

Posted in: idiopathic hypersomna, Journey

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Flumazenil for the Treatment of Refractory Hypersomnolence

Background

In 2012, researchers from Emory University published a paper on their finding of a substance that increases the effectiveness of GABA in people with central disorders of hypersomnolence, particularly idiopathic hypersomnia. In that paper, they discussed their findings in seven patients who were treated with flumazenil. In 2014, Kelty et al published a case report on the use of flumazenil given intravenously to a single patient for 96 hours and then implanted under the skin. The current paper from the group of Emory researchers includes information from additional patients who were treated with a compounded version of flumazenil.

What kind of a study was this?

This was a retrospective study, meaning that the researchers did not set out ahead of time to perform a research study with predetermined goals and questions. Instead, two neurologists prescribed the medication, flumazenil, as part of their routine practice to all appropriate patients who came to their clinic. Then, at a later date, they formulated their questions.

Who were the patients and what did they do?

One hundred fifty-three patients (92 women) were prescribed flumazenil by the physicians at Emory.
sleepy
Their average age was 35.5 years. All of the patients completed the Epworth Sleepiness Scale (ESS) before starting treatment with flumazenil, and some patients completed a second ESS after starting treatments.

Who were the researchers and what did they do?

Dr. Trotti and her colleagues at Emory University reviewed the charts of their patients with hypersomnolence for whom they had prescribed flumazenil. They also reviewed the patients’ electronic correspondence and pharmacy records.

What were the results of the study?

Ninety-six of the 153 (63%) patients reported that they were less sleepy after taking flumazenil. On the other hand, 19 people reported that they were more sleepy after taking flumazenil. Among these 19 patients, nine continued taking flumazenil because the increased sleepiness was only temporarily worse right away after taking the medication or the sleepiness improved after the flumazenil dose was changed.

Before starting treatment, the average ESS score was 15.1, even among those who were taking wake-promoting agents. After starting treatment with flumazenil, the average ESS score dropped to 10.3 among the 40 people who reported improved sleepiness and who completed a second ESS.

awakeOf the 96 patients who reported that their sleepiness improved in response to treatment with flumazenil, 59 continued to take the drug long term (average, 7.8 months at follow-up). Interestingly, 72% of women reported a positive response to the drug, whereas only 48% of men had a positive response. Similarly, people who reported having sleep inertia (difficulty waking up, including grogginess or disorientation immediately upon awakening) were more likely to respond to flumazenil, as compared with those without sleep inertia (72% vs 42%).

Seventy-nine participants (52%) reported experiencing an adverse event (the most common being dizziness, anxiety, and headache), with 17 people stopping the medicine because of adverse events. Two patients had serious adverse events, and another had changes in liver function tests that resolved after stopping the drug.

What were the researchers’ conclusions?

According to the authors of this study, “In summary, our clinical experience in a large group of patients with treatment-refractory hypersomnolence demonstrates meaningful and sustained clinical response in a substantial fraction of patients. Important questions remain about optimal formulation, dosing, long-term safety, and effectiveness. Prospective, controlled studies, ideally with measurement of plasma or cerebrospinal fluid flumazenil levels, are clearly needed. However, our experience suggests the possibility of clinical use of flumazenil in carefully selected, severely affected patients lacking other treatment options.”

Trotti LM, Saini P, Koola C, LaBarbera V, Bliwise DL, Rye DB.  Flumazenil for the treatment of refractory hypersomnolence. J Clin Sleep Med 2016;ePub ahead of print.

Posted in: Flumazenil, Hypersomnia, idiopathic hypersomna, Research

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The Blight on My Daughter’s Life

I gave birth to my daughter at 7:28 pm after 33 hours of labor. I was worn out, so I relinquished my baby to the care of the nurses within a couple hours to get some sleep. I didn’t see Cait again till 6:00 am. And, for the first year and a half of her life, if I put her down at 7:00 pm I knew I wouldn’t hear from her again till 8:00 the next morning. In retrospect, I wonder if it was an omen of what was to come.

Cait settled into normal sleep-wake patterns as a toddler. Toward the end of grade school, though, I remember that, if I took us out to dinner, she would invariably complain of being tired. I kept having to tell her not to lay her head on the table in restaurants.HPIM0292.JPG

Through her adolescence, I learned the hard way that it was best not to say anything to her early in the morning. “Not a morning person” was the understatement of the decade.

Cait completed her first bachelor’s degree on schedule and stayed on to get another BA and earn a teacher’s certificate, having settled on a career path late. It was during that program that the wheels came off. She lost motivation. Her sunny disposition disappeared. She earned the BA but couldn’t complete the certificate. After about 5 months living with a friend and making no headway with a job hunt, she moved in with her step-dad and me.

She landed a job. I thought she’d gotten her feet under her. But then she just tanked—spent all her time in bed except for when she had to work. It looked like depression to me. She found a counselor. Eventually she agreed to take antidepressants. Her mood lifted, but the fatigue didn’t go away. Her doctor checked her B-12 and her thyroid and screened for Lyme disease. She was sent for a sleep study and diagnosed with mild sleep apnea. She invested in a CPAP machine and used it faithfully. It didn’t help. She kept going back to the sleep study site asking why, and they would ask, “Do you meditate? Do you exercise? How much protein are you eating?”

Five months later, she thought she might have had a mini seizure. She was referred to a neurologist who happened to be a sleep specialist. The pre-appointment questionnaire drilled down on questions about sleep, and Cait answered them fervently. On her first visit, this doctor quickly resolved the question she came with and then said, “But I think you have another problem and it isn’t sleep apnea.” It was another month before a sleep study with MSLT confirmed it, but, when we did the Internet search that night, we knew he was right. Idiopathic Hypersomnia.

I hate this blight on my daughter’s life. I’m her alarm clock. I pack her lunch daily and make sure she has a good dinner every night. She doesn’t have energy for anything except her job. What kind of life is this? She’s planning now to move back to Illinois where she has a cadre of friends and a beloved church community within a 15-minute drive radius. I want her to have a life of her own, but I wonder, “Can she pull this off? Will she have the support she needs?” How I hate this blight on my daughter’s life!!

Ellen Swinford

Germantown, MD

Posted in: Awareness, idiopathic hypersomna, Journey, Share the Journey Stories

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Idiopathic Hypersomnia – A Turtle Going Uphill Through Molasses in January

Share the Journey Stories

Words escape me. I am a reader, a writer, and a highly educated woman with multiple degrees. Eloquence is high on my list of valued traits. Communication is one of my strengths, and something I’ve always been commended for. And yet, words escape me. I stutter, I stumble, I am tongue-tied. It’s like trying to grab water in your fist.

That is part of what it feels like to have brain fog, a symptom of multiple chronic illnesses, including my idiopathic hypersomnia. You can’t find the words you are looking for, even everyday words. But I am not stupid. I do not have a low vocabulary. I have a Bachelor of Arts in English; communicating in a clear and concise manner was something I was trained to do. But words escape me. Not just once in a while. All the time.

Brain fog is just one aspect of IH. It isn’t even the biggest aspect, nor the most important. However, it matters because how can you convey what it is like to have constant all-consuming fatigue if words escape you?

I would say that my fatigue is a “maelstrom,” or a “torrent” within and surrounding me, but the connotations of such descriptions bring up thoughts of fast and wild disasters. Fatigue is much more subtle and slow. It is not the quick death of a bullet to the brain. Fatigue is more like walking through thick, high mud. Like swimming through honey. Like drowning in an ocean. Like being in a bog, surrounded by impenetrable fog. Like a turtle going uphill through molasses in January. It is all of these things simultaneously. It is wearing a lead straitjacket while trying to escape drying cement. It is slow, and it eats you alive from the inside. It is the thick, heavy, slow, drained, helpless, hopeless feeling.

Imagine dealing with all of that, day in and day out. Now experience all of that while trying to be a competent part of society. Subtract caffeine. Add heart palpitations and a minimum nightly requirement of eleven hours of sleep. The hardest part of your day is waking up. The second hardest is getting out of bed. The third is staying awake. An eternal struggle. Stay awake. Be productive. Accomplish your tasks.

Imagine doing all your normal tasks (and they have to be done well and in a timely manner) when you haven’t slept in three days. Now imagine doing that every day. Can you? I can. Because that is what I do every day, because idiopathic hypersomnia means that I need a minimum of eleven hours of sleep in order to feel like I haven’t slept in two or three days. I cannot remember what it is like to feel refreshed, rejuvenated, and awake. It’s been years. I would, without hesitation, amputate an arm or a leg if that was the cure. Think about that.

Take all of that and tell me that fatigue isn’t debilitating. I dare you.

But you know what? No matter how many people read this, there are still going to be those that think fatigue isn’t debilitating. But life keeps going. So, just like that turtle, I will keep going, even if it is always uphill through molasses in January.

Caitlin Swinford
Germantown, MD

Posted in: Awareness, BeyondSleepy, Hypersomnia, idiopathic hypersomna, Journey, Share the Journey Stories, Social Media, SomnusNooze

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Sleep Disorders and Social Security– What You Need to Know

Social Security Disability Series: Part 2

Sleep Disorders and Social Security Disability – What You Need to Know

By Anjel Burgess, JD

Jennie has been fortunate enough to secure her short-term disability benefits. She has also hired an Attorney to assist her with the Social Security Disability application process. Although her family encouraged her to “file on her own instead of paying out of pocket to hire an attorney,” Jennie has learned throughSomnusNooze that Social Security Disability attorneys are not paid by a retainer, as many attorneys are. Rather, they work on a contingency basis, which means that Jennie does not have to pay out of pocket to get representation. For the attorney to get paid, two conditions must be met:

  1. The attorney must win Jennie’s case.
  2. Jennie must be entitled to past-due benefits (also known as back pay).

If both conditions are met, the Social Security Administration (SSA) will pay Jennie’s attorney 25% of Jennie’s back pay, up to a maximum of $6,000. Since obtaining the benefits is of the utmost importance to Jennie, she has decided that she can’t afford NOT to have an attorney. She has hired an attorney who will file an initial application for her and represent her through each step of the process.

Jennie’s attorney has explained to her that most people who receive Social Security Disability benefits have been through a three-step process and that it may take two years or more before she is approved (note that in some states, it is a 2-step process, as the Reconsideration step is eliminated). These steps include the following.

  1. Initial – Roughly 30% to 35% of applicants are approved at this level. Once SSA receives the initial application, they request medical records from Jennie’s providers. Once the SSA receives Jennie’s medical records, SSA will have its own physician or psychologist (or both a physician and psychologist) review the medical records to give their opinion as to what limitations they believe that Jennie has, as well as the impact of those limitations on her ability to work. This would also include a review of the opinion of Dr. Wonderful and any other of Jennie’s treating physicians. Oftentimes, SSA will decide that they need an outside opinion in making their decision. If this occurs, the SSA may require that Jennie be examined by an independent physician or psychologist (at SSA’s expense) who may not have an expertise in idiopathic hypersomnia. This independent professional then prepares a report that summarizes her or his observations and professional opinion. If the case is denied initially, Jennie can appeal.
  2.  Reconsideration – Roughly 7% to 10% of applicants are approved at this level. At the Reconsideration step, SSA obtains updated medical records and completes another internal review of Jennie’s file to see if any new evidence would result in a favorable outcome. It is possible that the SSA may send Jennie out for an independent examination at this stage as well. Again, if Jennie is denied, she can appeal.
  3. Hearing – Roughly 50% to 55% of the remaining applicants are approved at this level. This is the stage at which most people are awarded benefits, particularly after attending a hearing in front of an administrative law judge. The hearing is the opportunity for Jennie and her attorney to present the big picture to a judge. The big picture includes all medical records and testimony from Jennie herself. Jennie’s attorney will also have the opportunity to make oral and written arguments on Jennie’s behalf.

The common theme in each step of the process is medical records. Medical records are vital in a disability case because they can provide objective support for an individual’s complaints. For Jennie, her medical records tell the story of a very symptomatic individual who tried multiple medications but could only be productive for about 3 hours throughout the day. Her doctor ruled out many other conditions, and was able to confirm the diagnosis of idiopathic hypersomnia via a polysomnogram and Multiple Sleep Latency Test. Jennie’s medical records provide proof that she has idiopathic hypersomnia and authenticate her symptoms, which are reasonably due to idiopathic hypersomnia.

If you, too, are ready to file for Social Security Disability or have been denied at any step in the process, contact a qualified Social Security Disability Attorney to assist you with the process.

Anjel Burgess is a partner/attorney at the Law Firm of Burgess and Christensen located in Marietta, GA. She exclusively practices Social Security Disability Law for adults and children, as well as the ancillary areas of Guardianships and Special Needs Trusts. By doing so, she has been able to make a positive difference in the daily lives of people who need help the most. You may reach her at Anjel@DisabilityHelpLine.com or 770-422-8111. You can learn more about her services at www.DisabilityHelpLine.com

Have you joined the registry yet?
A patient registry is a collection that is established to collect standardized information about a group of patients who share a common condition or experience. In the case of the Hypersomnia Foundation Registry at CoRDS  (Coordination of Rare Diseases at Sanford), the people who participate have one of the central disorders of hypersomnolence: idiopathic hypersomnia, Kleine-Levin syndrome, or narcolepsy (type 1 or 2). Becoming part of the registry is easy and it could help solve the puzzle of hypersomnia! Simply go to http://www.sanfordresearch.org/cords/ and click on the ENROLL NOW button.

A patient registry is a collection that is established to collect standardized information about a group of patients who share a common condition or experience. In the case of the Hypersomnia Foundation Registry at CoRDS (Coordination of Rare Diseases at Sanford), the people who participate have one of the central disorders of hypersomnolence: idiopathic hypersomnia, Kleine-Levin syndrome, or narcolepsy (type 1 or 2). Becoming part of the registry is easy and it could help solve the puzzle of hypersomnia! Simply go to http://www.sanfordresearch.org/cords/ and click on the ENROLL NOW button.

 

Watch Beyond Sleepy in the Mile-High City

Denver6

Were you one of the more than 1250 people who joined us at Beyond Sleepy in the Mile-High City, the Hypersomnia Foundation’s Regional Conference, in person and online on June 12, 2016? If not, you can still watch the conference in its entirety by registering at http://www.hypersomniafoundation.org/2016-hypersomnia-regional-conference-register/. If you previously registered and missed any part of the program–or simply want to watch it again–please go to http://www.hypersomniafoundation.org/2016-hypersomnia-regional-conference-live/. The video will only be up for two more weeks!

 

Posted in: Action, Awareness, BeyondSleepy, Conference, CoRDS Registry, Education, Hypersomnia, idiopathic hypersomna, Kleine-Levin syndrome, narcolepsy, News, SomnusNooze, SSDI

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Solving the Puzzle of Hypersomnia One Piece at a Time

The Hypersomnia Foundation Board of Directors is thrilled to announce the launch of the Hypersomnia Foundation’s Registry at CoRDS (Coordination of Rare Diseases at Sanford). Whether you have idiopathic hypersomnia, Kleine-Levin syndrome or narcolepsy type 1 or 2, please enroll in the Registry today to help solve the puzzle of hypersomnia. Your information will help researchers comprehend the journey that people with hypersomnia travel in their search for a diagnosis and will answer many other questions, including the symptoms that you experience, which may help to distinguish among these disorders, and the treatments that have and have not worked for your symptoms. Registration is simple (the second figure below describes the process). Simply go to http://www.sanfordresearch.org/cords/ and click on the ENROLL NOW button. Your answers to the Registry questions will help researchers design better diagnostic tools and more effective treatments and, eventually, find a cure. CoRDS personnel are available to help you, if needed, during the registration process. They can be reached at cords@sanfordhealth.org or 1 (877) 658-9192.

 

What is a Registry? A patient registry is a collection that is established to collect standardized information about a group of patients who share a common condition or experience. In the case of the Hypersomnia Foundation Registry at CoRDS, the people who participate have one of the central disorders of hypersomnolence: idiopathic hypersomnia, Kleine-Levin syndrome, or narcolepsy (type 1 or 2).

What is a Registry?
A patient registry is a collection that is established to collect standardized information about a group of patients who share a common condition or experience. In the case of the Hypersomnia Foundation Registry at CoRDS, the people who participate have one of the central disorders of hypersomnolence: idiopathic hypersomnia, Kleine-Levin syndrome, or narcolepsy (type 1 or 2).

cords process

CoRDS Registration Process

 

Posted in: Action, Awareness, BeyondSleepy, CoRDS Registry, Education, Hypersomnia, idiopathic hypersomna, Kleine-Levin syndrome, narcolepsy, SomnusNooze

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Act Today and Let Your Voice Be Heard

Very recently, the Hypersomnia Foundation became aware of an opportunity to help shape the future of sleep research. The National Institutes of Health, the primary source of funding for medical research in the United States, has issued a Request for Information, which you can view at: https://grants.nih.gov/grants/guide/notice-files/NOT-HL-16-312.html.

The final date to submit your comments has been extended to today, May 16, 2016.Screen Shot 2016-05-16 at 12.41.44 PM

Last week, we sent an email to everyone in our database to encourage you to make your voices heard. We are urging you again to act today. Please share your hypersomnia story with the people who determine medical research priorities and allocate funds.

  • Tell them why the currently available diagnostic tools and lack of awareness about hypersomnia led to a lengthy delay in your diagnosis.
  • Tell them why research into the cause of and effective treatments for hypersomnia are so desperately needed.
  • Tell them why we need a cure as soon as possible because hypersomnia is limiting your ability to achieve your dreams, complete your education, or even provide financially for your family.

Please join your voice with ours as we fight to secure the place of hypersomnia at the top of the nation’s sleep research agenda. The Hypersomnia Foundation Board of Directors has submitted the following response, and we encourage you to send your comments and suggestions to the NIH, as you deem appropriate, at rfi-sleepplan2016@collaboration.nhlbi.nih.gov.


 

Hypersomnia Foundation Response
to the National Institutes of Health’s Request for Information:

For nearly a century, the study of sleep and its function(s) in health and disease has been principally focused within approaches that center on not enough sleep. Although excessive daytime sleepiness (EDS), cognitive dissonance, and other symptoms not surprisingly result from sleep deprivation, central disorders of hypersomnolence (CDH; e.g., idiopathic hypersomnia, Kleine-Levin syndrome,
narcolepsy type 1 [NT1], and narcolepsy type 2 [NT2]) in humans (in which EDS is often accompanied by extremes of sleep length) emerge spontaneously. Studying patients with CDH has already proven to be fertile ground for investigation, as evidenced by the discovery that loss of brain hypocretin causes narcolepsy with
cataplexy (i.e., NT1). Yet, for the other CDH, there remains a large unmet clinical need, with further research and development prime for discovery and the potential for extraordinary translational opportunities.

Symptoms of CDH can be disabling, and because, for example in NT1, they also begin in adolescence or young adulthood, are chronic, sometimes progressive, go undiagnosed or misdiagnosed for decades, and respond variably to medications.
Despite advances around NT1, the knowledge gained has not translated smoothly to
the clinical realm. Diagnoses of CDH inclusive of NT1 since 1975 have relied upon a
forty-year-old test (viz., the Multiple Sleep Latency Test [MSLT]) that is cost, time,
and labor intensive and that was born of practical necessity and subsequently
tweaked to specifically identify NT1. In 2006, two preeminent sleep researchers concluded that the MSLT yields “a large number of false-positives” and that an increased daytime propensity to REM-sleep—traditionally accepted to be the sole domain of NT1—does “not appear to have any specific pathognomonic significance.” Yet, in 2016, the MSLT remains the gold standard that drives diagnoses and all that it implies. For clinician scientists, this means, for example, how clinical trials are designed and studies of heritability are conducted. Even more so, for patients, this has enormous implications for prognosis, treatment choice, access to medication(s), and accommodations/disability status.

There are currently no FDA-approved treatments for the CDH—medication choice being limited to those for narcolepsy. Since the 1930s, conventional
psychostimulants such as ephedrine have been used to treat NT1. The majority of the current pharmacological armamentarium and drug development are similarly designed and focused upon promoting wakefulness by enhancing brain monoamines. Drugs more directly designed to replace hypocretin continue in development 16 years after the discovery of hypocretin. An alternative construct in approaching the biology and treatment of CDH has recently been proposed that appears to hold great promise for many patients. People with CDH without NT1 (i.e., hypocretin being intact) do not appear to suffer from any “loss of function” per se but, rather, a gain of function in sleep-promoting brain circuits. Thus, pharmacologic agents that antagonize the sleep-promoting and consciousness-dampening neurotransmitter gammaaminobutyric acid (GABA), such as flumazenil, clarithromycin, and pentylenetetrazol, have either been demonstrated to be effective or are in clinical trials for CDH patients in whom traditional wake-promoting agents have not been helpful.

We advocate for initiatives to fund discovery research that translates to improve the human condition of people with CDH in whom sleep is prolonged and ostensibly persists into “wake.” Enhanced recognition and improved treatments call for greater understanding of not only the clinical spectrum of CDH and the natural history of these disorders, but also mechanistic understanding of their biological underpinnings. Diagnostic tools that are highly discriminative and designed to capture more than just EDS and an increased daytime propensity to REM sleep are an absolute necessity. CDH remain diagnoses of exclusion such that greater understanding of potential mimics—which themselves would enhance mechanistic understanding of sleep—and biomarker discovery are also high priorities. As there are numerous stakeholders in such endeavors, as evidenced in the summary provided above, the absolute need to encourage greater dialogue and collaboration among patients, patient advocacy groups, professional organizations representing sleep physicians, funding agencies, and industry cannot be understated. With increasing dissemination of knowledge through many means, not the least of which includes social media, patient consumers with CDH-like symptoms have become increasingly knowledgeable. They are acutely aware that CDH outside the realm of NT1 is not well served by current medical knowledge or practice in this realm. Accepting the status quo risks alienating the public and medical consumer.

We would, therefore, propose including a sleep neurobiologist on the NHLBI Sleep
Disorders Research Advisory Board and developing mechanisms for solicitation of
program projects and set-aside funds specifically to research hypersomnia, with requests for proposals to prioritize filling unmet clinical needs in the following areas:

R37 Javits Neuroscience Investigator Award
NIH EUREKA grants
R13 funding to support conferences
T32 grants for postdoctoral study
RFAs and more specifically RFPs
SBRI funding for better diagnostic tools

Because the breadth of scientific inquiry or line of investigation needs incredible resources and sustainability, we would advocate for funding initiatives with set-aside monies at all levels of training, including predoctoral, doctoral, postdoctoral, junior investigator, and senior investigators, and we envision promoting set-aside monies for all the Career Development K Awards for investigators with projects relevant to CDH.


 

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Learn about the latest hypersomnia research on June 12th at the Hypersomnia Foundation’s regional conference, Beyond Sleepy in the Mile High City. Scientists will share findings from their recently completed clinical trials and other ongoing studies, lead us on a journey through the drug discovery and approval process, and help us to cope with the daily struggles of hypersomnia. You will also learn how your future participation in the registry can help to solve the puzzle of hypersomnia.

Tickets are running out so order your $25 ticket online to join us in person in Denver or wait until June 1 to sign up for a live Internet stream of the conference, brought to you free of charge through the generous support of Balance Therapeutics, Inc., and Flamel Technologies, SA.

 

 

 

Posted in: Action, Awareness, Education, Hypersomnia, idiopathic hypersomna, Kleine-Levin syndrome, narcolepsy, News, Research, SomnusNooze

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Her

All I can say is my admiration for those that suffer with idiopathic hypersomnia (IH) is truly immense. I love an IH sufferer, and even though she fights every day just to participate and contribute, she still shares humor and kisses like smuggled chocolate drops in a dreary math’s lesson.

sleeping woman Some days you can see the drugs are in slow mo, and all you want to do is wrap your arms around her and pump her up with the normalcy of simply feeling awake. Every tomorrow brings fresh hope she will make it all the way to the end without a crippling migraine, or be slam dunked by a drooling sleep fest, stealing away her hard-earned achievements … Or worse still… a cruel and soul-destroying comment from an ignorant and narrow-minded baboon stewing in his ungrateful and wasted soup of well-being. Stupidly, he mistakes her for lazy, slow, or disconnected, having no idea that he has just had an encounter with a rare warrior—one who wins and conquers life one precious moment at a time in a world where whole years are abandoned and forgotten. She, so young, has learnt how to manage a bigger load, invisible to the untrained eye, with finite stamina, measuring routine activities carefully with brave grit and frowned-faced fortitude.

Yet, as I watch her slow drunkard-like stance, slowly mobilizing each muscle to reach vertical every morning, I no longer feel that dark despair and loss. I am now infused with hope, amused and bewildered by how love curled by pain for so long can march you back up a cranky forgiving road to welcome in our new norm. Two adult women, cradling acceptance and insistence, seesawing between the two, me and her, mother and daughter.

Anonymous Supporter

Posted in: Awareness, BeyondSleepy, Hypersomnia, idiopathic hypersomna, SomnusNooze, Uncategorized

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Sleep-Wake Disturbance Following a Traumatic Brain Injury

Background

According to the Centers for Disease Control and Prevention (CDC), more than 2 million people in the United States suffer a traumatic brain injury (TBI) every year. Most people with a TBI will also experience a sleep-wake disturbance (a real or perceived change in night-time sleep with resulting daytime impairment, SWD).

Over the past 10 years, a group of scientists in Switzerland has been focusing their research on SWD after TBI. In 2015, Dr. Imbach and his colleagues published their results of a study in which they examined the sleep of 60 patients 6 months after the patients had experienced a TBI. They found that the presence of bleeding in the brain at the time of injury was the greatest risk factor for developing a SWD. A new study followed those same patients for another 12 months (18 months total), and we report the results of that study here.

Who were the participants in the study and what did they do?

brain_xray158w210hThe 60 participants in this study were selected from among 140 adults who had experienced a first-ever TBI. They each underwent a computerized tomographic (CT) scan within 4 hours after the TBI and detailed assessment with standard clinical metrics (e.g., the Glasgow Coma Scale, which is a rough measure of the severity of the brain injury). The participants were matched with 42 people who did not have a TBI but who were of similar age, sex, and sleepiness (control group). Eleven people in the control group dropped out of the study, leaving 31 with complete data from all testing.

The average age of participants was 33 in the TBI group and 36 in the control group. Eleven participants in each group were men.

All participants wore an actigraph for two weeks on two separate occasions: for those with a TBI, six months after having the TBI and then again 18 months after the TBI. (An actigraph, which looks like an oversized watch, is typically worn on the nondominant wrist [that is, if you are right-handed, you would wear it on your left wrist]. It contains an accelerometer and records movements. Once the testing period is complete, the data are downloaded from the device and analyzed off line.)

Participants also reported their subjective perceptions of sleepiness and daytime fatigue by way of Epworth Sleepiness (ESS) and Fatigue Severity (FSS) Scales at these same intervals.

Who were the researchers and what did they do?

Dr. Lukas Imbach and his colleagues in Zurich and Bern, Switzerland, conducted a number of objective measures of sleep in all of the participants in both groups. In the TBI group, this testing took place six months after the TBI and, again, 18 months later.

They performed overnight sleep tests (polysomnography), commencing at 23:00 and terminating at 07:00, before then assessing for participants’ increased propensity to daytime sleepiness by way of daytime nap studies (i.e., the Multiple Sleep Latency Test or MSLT). They compared the findings from the actigraphs, polysomnograms, and MSLTs and the FSS and ESS scores between the two groups, and among the TBI patients at two different time points following their head injuries.

What were the results of the study?

When measured over 24 hours with actigraphy, night-time sleep, but not daytime sleep, was longer in the TBI group (8.1 hours) as compared with the control group (7.1 hours).

Delta power, sleep fragmentation, and distribution of sleep stages on the polysomnogram were normal in the TBI group. Sleep latencies on the MSLT were shorter in the TBI group (an average of 7 minutes) as compared with the control group (11 minutes). Based on the MSLTs (objective measure), excessive daytime sleepiness (EDS) was present in 67% of people with a TBI and 19% of control subjects. These levels of EDS remained fairly constant in the TBI group when comparing results at six and 18 months after the injury.

When comparing the objective and subjective measures of EDS (that is, MSLT vs ESS and FSS), the researchers identified a mismatch, “indicating persistent misperception of sleep-wake disturbance” in the group with TBI.

The presence of bleeding in the brain with the TBI and more severe TBI (lower Glasgow Coma Scale scores) predicted objective metrics of increased sleep quantities at night only during the major sleep period and EDS at 6 months after the TBI. Although findings at 18 months following the TBI emphasize the chronic nature of the negative impact of TBI upon SWD, the 6-month association between bleeding in the brain with the TBI and initial clinical severity of the injury was inexplicably no longer evident at 18 months following TBI.

What were the authors’ conclusions?

“We now provide long-term, prospective, controlled, and electrophysiologic evidence that sleepiness and [increased sleep need] remain a significant problem not only in the first months after TBI, but also in the long run.”

Imbach LL, Buechele F, Balko PO, Li T, Maric A, Stover JF, Bassetti CL, Mica L, Werth E, Baumann C. Sleep-wake disorders persist 18 months after traumatic brain injury but remain underrecognized. Neurology. 2016 ePub ahead of print.

An accompanying editorial to this paper concludes that, “Imbach et al. make a compelling case that posttraumatic sleep-wake disorders may represent a silent epidemic. With epidemiologic studies showing rising rates of TBI in civilian and military populations over the last decade, and with Imbach et al. now showing that the majority of patients with TBI have objective evidence of sleep-wake disturbance, the authors of future clinical guidelines will need to consider the emerging evidence supporting sleep studies in the care of patients with TBI.”

Edlow BL, Lammers GJ. Bringing posttraumatic sleep-wake disorders out of the dark. Neurology. 2016 ePub ahead of print.

Editor’s comments

It is important to realize that, although the MSLT results showed a shortened sleep latency in the participants with TBI, as compared with those without TBI, actigraphy identified no differences between the two groups with regard to amount of time spent sleeping during the daytime.

Note also that the overnight sleep studies were terminated at 0700, resulting in a maximum potential sleep time at night of 8 hours. Thus, while 67% of participants with TBI had a mean sleep latency of less than 8 minutes on the MSLT and would therefore meet International Classification of Sleep Disorders-3rd edition (ICSD-3) criteria for idiopathic hypersomnia, how many may have qualified for a diagnosis based on an overall sleep length exceeding 11 hours is not clear based on how the testing was conducted. It remains to be determined whether TBI, no matter how severe initially, might contribute to hypersomnia otherwise presumed to be “idiopathic,” and, if eventually deemed to meet ICSD-3 criteria for idiopathic hypersomnia, what the implications might be for prognosis and treatment.

This article was written by a volunteer medical writer and reviewed by David Rye, MD, PhD.

 

Posted in: BeyondSleepy, Hypersomnia, idiopathic hypersomna, Research, SomnusNooze

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Conference Details – Beyond Sleepy in the Mile High City!

Conference rectangle ImageIf you haven’t made your plans yet to attend the Hypersomnia Foundation’s regional conference in Denver—Beyond Sleepy in the Mile High City—you might want to do so today. Tickets are selling fast and seating is limited. The big event is in less than seven weeks! A registration link and additional information are available on the Hypersomnia Foundation website, or you can click on the ticket image below to go straight to the registration site. 

Wondering whether it’s going to be worth the trip to Denver? Well, wonder no longer. Whether you’re flying across country or driving down the mountain, this meeting offers plenty of time to network and socialize in addition to hearing some fantastic speakers. Remember, attending in person is the only way for you to participate in the question-and-answer session with the experts.

tickets 

SCHEDULE OF EVENTS

 Saturday evening, June 11, from 6:00 to 10:00 pm—Join us in the Atrium Alcove on the talkingfourth floor of the Embassy Suites Hotel 1420 Stout Street, Denver, CO. Catch up with old friends and meet new people as we play board and card games or just spend some time in conversation.

Sunday morning, June 12, from 7:30 to 10:30 am—Join us for a hot made-to-order breakfast at the Embassy Suites Hotel and grab a spot at one of the tables we will have reserved. Don’t worry if you’re not up at 7:30; we’ll save you a place to join us later. (Breakfast is free if you are a guest at the Embassy Suites Hotel and $20 if you are not).

Sunday morning from 10:00 am to noon—Join us to pick up your name badge at registration on the third floor in the Crestone foyer at the Embassy Suites Hotel. Didn’t have enough time to socialize on Saturday evening? We will have a designated gathering space available during this time. Be sure to eat before coming to the conference. We will not be serving lunch.

Sunday afternoon from noon to 5 pm—Join us in the Crestone Salon B meeting room on the third floor of the Embassy Suites to hear six scientific presentations covering the latest on hypersomnia research and how to cope with hypersomnia through the use of behavioral sleep medicine, as well as other fabulous topics. Listed below are the speakers and their topics.

 SPEAKERS AND TOPICS

Isabelle Arnulf, MD

Double-blind drug studies in France to treat idiopathic hypersomnia

Richard Bogan, MD

The long and winding road from drug discovery to FDA approval: participating in clinical trials

Michel Lecendreux, MD

What does hypersomnolence look like in children and adolescents?

Jason Ong, PhD

How to live with hypersomnia today: incorporating behavioral sleep medicine in the treatment of central disorders of hypersomnolence

David Rye, MD, PhD

What are the latest developments in research on idiopathic hypersomnia?

Lynn Marie Trotti, MD, MSc

Information is power! Contributing to the Registry of Central Disorders of Hypersomnolence at CoRDS

Q&A

Available only to those who attend the meeting in person. We will not be streaming this portion of the program.

As of today, rooms are still available at the Embassy Suites Hotel, 1420 Stout Street, Denver, CO. Call 303.592.1000 or go on line to www.denverdowntown.embassysuites.com to reserve your room.

Copy the following link onto your browser to see where this fabulous conference will be held http://www.hilton.com/en/hotels/content/DENESES/media/pdf/en_DENESES_denesmeetings.pdf

Posted in: BeyondSleepy, Conference, Hypersomnia, idiopathic hypersomna, Kleine-Levin syndrome, narcolepsy, SomnusNooze

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