Orexin/Hypocretin Agonists are Coming! Part I: Reporting Back from World Sleep 2019

Originally at: http://julieflygare.com/orexin-hypocretin-agonists-are-coming-part-i-reporting-back-from-world-sleep-2019/

Room 116: A Glimpse of the Future

It was a basic, boring conference room, but there was nothing basic or boring about Room 116 at the Vancouver Convention Center on Wednesday, Sept. 25, 2019 at 4:30 p.m. As the final session of the final of five days of the World Sleep Congress including World Narcolepsy Day, I felt wobbly and cataplectic, but I couldn’t go home, not yet. At exactly 4:30 p.m., I eagerly stepped into Room 116 to join narcolepsy experts, drug developers and other patient advocates for a look into the future. 

This final session, simply titled “Narcolepsy” – included researchers sharing important new results related to novel and upcoming narcolepsy therapies. In July 2018, I reported here on the unprecedented amount of drug development underway for narcolepsy. Since then, the FDA has made three important approvals and more drug development continues on, full-steam ahead!

 

So it’s time for an update. Part I will catch you up to speed on orexin/hypocretin agonists, and Part II will share many more exciting developments. 

(Please note: I am not a scientist or doctor. You should always speak with your narcolepsy specialist about treatment options and whether a clinical trial would be a good option for you. However, I hope this post helps provide access to information, because when navigating a complex healthcare system with a serious condition like narcolepsy, information is power.)

Advancing Orexin-Related Therapies

Since 1999, we’ve known that type 1 narcolepsy with cataplexy is caused by a selective loss of neurons producing the neuropeptide orexin (or hypocretin), which plays a central role in maintaining wakefulness. However, finding compounds able to cross the blood-brain barrier and mimic the function of orexin has been scientifically challenging. Over the past 20 years, a few approaches have been explored, but promising research started coming out of Japan a few years ago with Takeda Pharmaceuticals. 

So when Dr. Rebecca Evans took the stage in Room 116 to present Takeda’s first-in-human clinical trial findings for the orexin 2 receptor selective agonist, TAK-925, the excitement was palpable. I felt honored to be in the room as these outcomes were shared publicly for the first time here. 

TAK-925

  • Background: In 2017, a patent for orexin 2 receptor selective agonists, including the clinical candidate TAK-925 was claimed. In April 2018, the orexin 2 receptor-selective agonist, TAK-925, was found to significantly increase wakefulness and recover cataplexy-like episodes in mice with a type of narcolepsy. 
  • A second publication reported on the pharmacological and electrophysiological characterization of TAK-925 from in vitro (petri dish-type studies) and in vivo (studies in wild-type mice, common marmosets, and cynomolgus

The Snoring Mouthpiece Review Issues Blog Post On Humidifiers And Snore RX For Snorers

Originally at: https://snoringmouthpiecereview.org/press/the-snoring-mouthpiece-review-issues-blog-post-on-humidifiers-and-snore-rx-for-snorers

The Snoring Mouthpiece Review has announced that they have published a new blog post on how humidifiers and snoring mouthpieces like SnoreRX can help snorers. The blog post is titled, “Humidifier: A Great Gift Even For A Snorer,” and explains why a humidifier can be a great gift idea for a friend or family member who snores. By introducing a moderate amount of moisture into the air, a humidifier can help the snorer relax and have a sound sleep that prevents snoring.

Steve Walker, author of the blog post, says, “A humidifier does more than just provide a spa-like ambiance to a room. It’s actually pretty useful to have a humidifier especially during the winter season.”

He adds, “It’s a practical gift because of the many uses of this particular electronic device. Aside from adding moisture in the air, the humidifier can also help relieve symptoms of different allergies, prevent dry skin, prevent babies from falling sick, and prevent snoring.”

According to the article, the moist air provided by the humidifier soothes the tissues at the back of the throat. The humidifier keeps the throat moist and this prevents irritation that is connected with snoring. Overall, humidifiers offer substantial benefits not only for the health of people but also for belongings and the atmosphere. When a humidifier is installed in the home, it not only helps strengthen the immune system, but it also decreases the incidence of nose bleeds by ensuring that the mucous membrane in the nose is moist.

Meanwhile, aside from the humidifiers, snoring can be prevented by snoring mouthpieces that have been well reviewed by The Snoring Mouthpiece Review. One example is the SnoreRX. The SnoreRX is FDA cleared and what makes it distinctive is the “MicroFit” feature. This allows the adjustment of the position of the lower jaw for maximize the person’s comfort and effectiveness.

However, the SnoreRX will have to be customized for each particular user through boil-and-bite technology. This means that it will have to be submerged in boiling water for approximately 18 seconds. The person who will use it will then clamp on it while it is still soft, resulting in a perfect mold for his or her mouth.

The “micro-adjustments” that are allowed to establish a better fit for the user are what make the SnoreRX different from the other snoring mouthpieces. It is the repositioning of the jaw that is one of the primary goals of mandibular adjustment devices (MADs) like the SnoreRX. This will make sure that the throat is free of obstruction, thus preventing snoring and sleep apnea. With its “Posi-Lock” feature, the customized setting will …

Taking a “Sick Day” with Narcolepsy

Originally at: http://julieflygare.com/taking-a-sick-day/

When working in traditional offices, I struggled with “sick days.”

I didn’t often get colds or flus. I just dealt with my narcolepsy with cataplexy, which was fairly stable and “well-managed” by the time I took these jobs.

Yet narcolepsy was still with me every day, to varying degrees — from minor annoyance to extreme discomfort — sprinkled over moments, minutes or hours.

I rarely felt fully “healthy” OR fully “sick” — like bed-ridden, throwing up, or contagious — things deemed worthy of sick days. My more invisible and consistent adversity was hard to measure, hard to explain to a supervisor & hard to decide for myself when to say “Nope, not today.”

I eventually got better at this though and realized I didn’t need to explain myself. I could say “I’m not feeling well enough to work today,” and walk away to do some self-care. (Read here about getting a nap space.)

For the past 1.5 years, I’ve had my dream job working for Project Sleep. Now, I make my own schedule, work at my own pace and do NOT commute three hours a day across Los Angeles.

Interestingly, now that my work is my passion, taking a day off means putting off something I feel strongly about, or delaying something where I feel my “timeliness” reflects upon my leadership skills or my nonprofit’s consistency.

However, by the end of World Sleep, I was zombie-esque and feeling down. Which I realize sounds odd because I had TONS to be happy about after a successful inaugural World Narcolepsy DayWorld Sleep Congress 2019 in Vancouver, Canada. However, I was so depleted & indifferent on my route home on Thursday, I recognized that I needed another full day off.

Yesterday, I unpacked and made a big batch of minestrone soup. I bought three kinds of ice cream and four bunches of flowers and eucalyptus to fill my apartment. I watched YouTube aimlessly, walked lots and lay with my legs up the wall to bring down inflammation in my ankles.

Last night, I started doing my work in my dreams! Today, I’m feeling good enough to get back to this work in reality.

I’m glad I gave my energy wave its due course. Running a non-profit organization as a person with a chronic illness has many interesting dynamics, this is just one of them. I am proud to serve in my role and believe that our organization being run by a person with a sleep condition will serve us well in the long run, so long as I remember to take breaks as needed. Somewhat like choosing …

Why You’re Not Sleeping Well Even If You Think You Are [Podcast 72]

Originally at: https://doctorstevenpark.com/hypersomnia?utm_source=rss&utm_medium=rss&utm_campaign=hypersomnia

The Hidden Dangers of Hypersomnia

hypersomnia

In this episode, Kathy and I are going to explain why even if you think you sleep great, you’re not. If you sleep like a log or can sleep anywhere, any time, this discussion is for you. We’ll be talking about the hypersomnias—when people tend to sleep too much or too long.

We’ll be revealing the following:

  • Why you can sleep 9 hours or more and will still feel tired
  • How you can stop breathing 25 times every hour and not have sleep apnea
  • Which doctor to see if you suffer from this condition
  • And much more…..

Download mp3  |  Subscribe


Show Notes

Sleep Interrupted: A physician reveals the #1 reason why so many of us are sick and tired

Upper airway resistance syndrome interview with Dr. Guilleminault

Insomnia as risk for future cancer

U-shaped curve for ideal sleep length

Sleep endoscopy findings in symptomatic patients with AHI < 5

Two things that go flop in the night blog post

Shift work and cancer

Sleep journal

Sleep tracking apps and devices

Narcolepsy vs. hypersomnias

doctorstevenpark.com/hypersomnia

Breathe Better Sleep Better Live Better Podcast on iTunes

The post Why You’re Not Sleeping Well Even If You Think You Are [Podcast 72] appeared first on Doctor Steven Y. Park, MD | New York, NY | Integrative Solutions for Obstructive Sleep Apnea, Upper Airway Resistance Syndrome, and Snoring.

from Doctor Steven Y. Park, MD | New York, NY | Integrative Solutions for Obstructive Sleep Apnea, Upper Airway Resistance Syndrome, and SnoringBlog – Doctor Steven Y. Park, MD | New York, NY | Integrative Solutions for Obstructive Sleep Apnea, Upper Airway Resistance Syndrome, and Snoring https://doctorstevenpark.com/hypersomnia?utm_source=rss&utm_medium=rss&utm_campaign=hypersomnia…

The Snoring Mouthpiece Review Publishes Post On Z Quiet, A Device Designed To Prevent Snoring And Its Complications

Originally at: https://snoringmouthpiecereview.org/press/the-snoring-mouthpiece-review-publishes-post-on-z-quiet-a-device-designed-to-prevent-snoring-and-its-complications

The Snoring Mouthpiece Review, which is based in Long Beach, California, has published a new blog post that discusses the causes and complications of snoring and its possible solutions. The blog post is titled, “Snoring: Causes And Complications Of It.” The article points out that it is heavy snoring that people should worry about because something more serious could be going on, such as sleep apnea.

Steve Walker, author of the article, says, “The vibrating nasal tissue is what causes the snoring sound. The more it vibrates, the louder the sound. There are various causes of snoring. In general, it is due to the tissues and muscles in the airway that tend to collapse and block the airway while a person is asleep. But what is more important to know are the potential complications of heavy snoring, such as high blood pressure, stroke, heart disease, and even falling asleep while driving.”

Vibrating nasal tissue is the main reason for the snoring sound. This is caused by the relaxed throat or nasal tissues through which the air goes through while a person is sleeping. When these tissues obstruct the airway, this reduces the amount of air going through the airway or the tissues may totally obstruct air flow so that the body is momentarily without air. Another possible cause of snoring is a genetic anatomic obstruction like large tonsils, a deviated septum, a large neck circumference, and a floppy soft palate.

Snoring begins to have complications when it interferes with the snorer’s breathing while sleeping and/or when it interrupts the bed partner’s ability to get sufficient restful sleep. When the snorer stops breathing while sleeping, this means that the oxygen level for that person decreases and he or she may awaken choking and gasping for air. This prevents the person from getting a good night’s sleep. And those momentary deficiency in oxygen may result into other more serious conditions, such as hypertension, stroke, and heart disease.

Naturally, it would be best for people who notice that they have possible symptoms of sleep apnea to consult with a doctor. And there are devices on the market that can help prevent snoring and sleep apnea. While the usual device prescribed for preventing sleep apnea requires the person to wear a bulky mask, modern snoring mouthpieces don’t require masks, one example of which is the ZQuiet. This is a mandibular adjustment device (MAD) type of snoring mouthpiece.

The ZQuiet has been in recent news and it is different from other MAD mouthpieces because while most of them require the jaws to be closed, with the lower jaw slightly in front of …

New Snoring Mouthpieces Review Blog Post Offers Advice To People Suffering From Exhaustion

Originally at: https://snoringmouthpiecereview.org/press/new-snoring-mouthpieces-review-blog-post-offers-advice-to-people-suffering-from-exhaustion

The Snoring Mouthpiece Review, which is based in Long Beach, California, has published a new blog post that offers advice to people suffering from exhaustion when they wake up in the morning. The article is titled, “Are You Exhausted When You Wake Up In The Morning?” It presents some remedies for people who feel exhausted even after waking up in the morning. It is pointed out that the primary reason is that the person is not getting enough sleep and that it could be even be related to a more serious condition, which is sleep apnea.

Steve Walker, a spokesperson for The Snoring Mouthpiece Review, says, “Sleep apnea actually causes you to stop breathing while sleeping. Your airway gets blocked as your muscles relax during sleep with the result that little to no air gets to your lungs. So, even if you think you’ve slept long enough, you still feel exhausted when you wake up in the morning. This sleep disorder is also the reason why you snore so loud.”

Steve continues, “The condition is indicated by loud snoring that is usually followed by choking noises. And if the brain detects that insufficient oxygen is getting into the body, the person instinctively wakes up to be able to breathe again and this may happen several times during the night. No wonder, you feel exhausted when you wake up in the morning.”

It should be noted that loud snoring does not necessarily mean that a person suffers from sleep apnea. It is loud snoring that is followed by choking or gasping sounds, or silent pauses may likely indicate sleep apnea. It often results into sleep deprivation, which is indicated in the morning as fatigue, unintentional napping, difficulty concentrating, mood swings, and irritability. Other common symptoms include insomnia, feeling tired even after having a full night’s sleep, headaches and migraines, reduced sex drive, nocturia, and loss of memory.

Meanwhile, a solution for snoring is the Good Morning Snore Solution (GMSS). This is a snoring mouthpiece that helps people manage their snoring. It is a Tongue Stabilizing Device (TSD) mouthpiece that is unique when compared to other mouthpieces, which are usually Mandibular Advancement Devices (MADs). The GMSS will work even for people with temporomandibular joint (TMJ) disorder or those have any type of specialized dental work, such as bridges, dentures, and others.

The GMSS is FDA-cleared and the company that produces it is accredited by the Better Business Bureau. It is comfortable to wear because it is flexible and made of soft material. It is also safe because it is free from BPA. Also, there is no problem about getting …

It’s Almost World Narcolepsy Day, Are You Ready?

Originally at: http://julieflygare.com/its-almost-world-narcolepsy-day-are-you-ready/

The week leading up to World Narcolepsy Day has quickly become one of the most surreal weeks of my life! Seeing posts, articles, videos and radio segments from around the globe honoring World Narcolepsy Day, wow!

World Narcolepsy Day Activities:

I will travel to Vancouver, Canada tomorrow to celebrate World Narcolepsy Day at World Sleep 2019, an international congress on sleep medicine. Join myself and Project Sleep virtually or in-person, here are some opportunities:

World Narcolepsy Day Pronouncement:

Tune in on Sunday, Sept. 22, 2019 at 12:00 noon ET for the World Narcolepsy Day Pronouncement – broadcasting via Facebook Live. Narcolepsy and idiopathic hypersomnia experts and community leaders gathered at World Sleep 2019 will discuss the importance of World Narcolepsy Day, raising awareness and advancing research to improve outcomes for people with narcolepsy and IH around the world.

To watch the live broadcast, simply go to Project Sleep’s Facebook page on Sunday 9/22 at 12noon ET and as soon as we “go live,” the video should show up in our newsfeed!

World Narcolepsy Day #NChat on Twitter

#Nchat is a monthly Twitter conversation that connects people with narcolepsy worldwide. Join in this special #WorldNarcolepsyDay #Nchat on Sunday, Sept. 22nd at 5:00 p.m. ET!

If you’re in the Vancouver area or attending World Sleep 2019, join us in-person for these opportunities:

  • World Narcolepsy Day “Selfie-Station” on Sunday, Sept. 22, 2019 from 10:00 a.m. – 4:00 p.m. PT in the Public Foyer, Vancouver Convention Center
  • Julie Flygare’s Author Table on Sunday, Sept. 22, 2019 from 12:15 – 12:45 p.m. PT in the Public Foyer, Vancouver Convention Center
  • Inaugural World Narcolepsy Day Forum on Sunday, Sept. 22, 2019 from 5:30 – 6:30 p.m. PT in Room 109, Vancouver Convention Center
    • Speakers: Matt O’Neill, Narcolepsy UK, Julie Flygare, JD, Project Sleep, Claire Crisp, Wake Up Narcolepsy, Eveline Honig, MD, Narcolepsy Network, Rebecca King, Hypersomnia Foundation, Mark Patterson, MD, Day4Naps
    • Session description: To mark the inaugural World Narcolepsy Day, Sept 22, 2019, leaders of narcolepsy non-profit patient organizations will share programmatic highlights, best practices and key insights from the front lines. Clinicians, researchers and patient community members will learn about the latest resources from non-profit sector while also fostering new ideas for working together across disciplines to improve outcomes for people with narcolepsy across the world.

GLOBAL begins with LOCAL: 

Awareness begins with one person reaching out to another person in their community. This is why Project Sleep has designed a beautiful World Narcolepsy Day webpage with resources and graphics to help you raise your voice in your community. 

Quick Ways to Support:

  • Add the Facebook Frame: Show support on Facebook by adding the World Narcolepsy Day frame

Living One-Third of My Life with Narcolepsy

Originally at: http://julieflygare.com/living-one-third-of-my-life-with-narcolepsy/

Twelve years ago today, I was diagnosed with a classic case of type 1 narcolepsy with cataplexy, just four days after my 24th birthday. So as of today, four days after my 36th birthday, I’ve now spent one-third of my life officially as a “person with narcolepsy” (not counting the years of symptoms before diagnosis).

For fun today, I searched my emails from that fateful day, Sept 18, 2007, and interestingly, I didn’t mention “narcolepsy” once via email that day, but I did send a lot of writing samples and cover letters for law firm job interviews… Interviews for fancy jobs I would never secure, and visions of “success” I would never realize.

“Futures have a way of falling down in mid-flight.” ~Veronica Shoffstall, After A While

It took a while for me to realize I wasn’t going to “get better and go back to my life as planned” after starting treatment. The emails to my dad proclaiming: “I HATE narcolepsy” started a few months later. For me, the hell of the next several years was a lifetime low.

“Innovation doesn’t happen because there’s some person who’s in some great circumstance and everything is going well and they get on a roll and they make something for the world. Innovation happens—art happens—because of suffering.” ~Claire Wineland, Klick MUSE New York

So here I stand, just four days away from the inaugural World Narcolepsy Day on Sept. 22, 2019. This week, I’m seeing posts from Japan, Australia, Brazil, Myanmar, Argentina, Spain, Finland, the UK, Ireland, and Israel. It’s totally surreal.

This is one of those moments that have made the past one-third of my life the richest years, with lessons learned about pushing beyond my comfort zone, letting go of other people’s expectations, standing up for what i believe in even when its not popular, and finding the courage to build my dream organization Project Sleep to align with like-minded people who want to disrupt the status quo and innovate for a brighter future.

No matter where you are, I want you to know that it is temporary and will not last forever. It’s a bubble. Things will shift or eventually, you can change bubbles. I never could’ve imagined where i would turn up 12 years after my narcolepsy diagnosis, it’s much bigger and more meaningful than anything i ever dreamed for myself.

I never could’ve reached this reality without your support. Thank you to YOUR kindness, trust and love over so many years.❣

from Blog – Julie Flygare http://julieflygare.com/living-one-third-of-my-life-with-narcolepsy/…

Listen: Julie Flygare on Present Not Perfect Podcast in honor of World Narcolepsy Day

Originally at: http://julieflygare.com/listen-julie-flygare-on-present-not-perfect-podcast-in-honor-of-world-narcolepsy-day/

Two people with narcolepsy. Double the insight!

A few minutes into recording, I realized I’d never recorded a podcast with a fellow person with narcolepsy before. This interview with Leyla Sarper for the “Present Not Perfect” podcast was such a neat experience. I’m super excited to share this with you today!

Listen now on Spotify here. Also available on Apple Podcasts, Stitcher, Google Podcasts and more! Just search “Present Not Perfect.”

What did we discuss?

  • being present,
  • letting go of self-guilt,
  • what is sleepiness?
  • coping with invisible illness,
  • Wide Awake and Dreaming: A Memoir of Narcolepsy,
  • cataplexy from Celine Dion,
  • nap rooms at work,
  • awesome dads,
  • building my “no” muscle,
  • learning the world doesn’t revolve around me,
  • re-arranging my life around my passions,
  • finding the courage to START, and
  • and of course, World Narcolepsy Day!!

To listen: Apple Podcasts, Spotify, Stitcher, Google Podcasts and more! Just search “Present Not Perfect.”

I hope you will enjoy and share. Thank you for your support!

from Blog – Julie Flygare http://julieflygare.com/listen-julie-flygare-on-present-not-perfect-podcast-in-honor-of-world-narcolepsy-day/…

Snoring: From An Engineer’s Point Of View

Originally at: https://snoringmouthpiecereview.org/good-morning-snore-solution/snoring-from-an-engineers-point-of-view

Snoring is often talked about by doctors. Well, that makes sense. After all, snoring is a health issue that deserves medical attention. That puts doctors in a very good position to impart critical information about snoring. Needless to say, they’re the best people who can help cure it as well.

It’s seldom that we hear engineers talk about snoring. So, when they do, our ears are open.

Haibo Dong is an associate professor of mechanical and aerospace engineering.

Dong and Ph.D. students Junshi Wang and Pan Han are gaining new understanding of the fundamental science behind sleep apnea by using CT scans and MRIs to image the mouth and nose and the full airway – the “windpipe” – during snoring and apnea, and then computer-modeling the actions that cause vibrations of the uvula and obstructions. They are looking for the changes in the shape of the airway during sleep that cause perturbations in airflow. Those perturbations are the vibrations of snoring and the often-resulting breathing difficulties.

(Via: https://news.virginia.edu/content/when-snoring-goes-annoying-dangerous-engineer-studies-sleep-apnea)

Snoring can be treated. Unfortunately, some treatments fail.

“Treatments often fail because there is a knowledge gap of the fundamental science behind the reasons for this health issue,” said Haibo Dong, a University of Virginia associate professor of mechanical and aerospace engineering who specializes in fluid dynamics research.

(Via: https://news.virginia.edu/content/when-snoring-goes-annoying-dangerous-engineer-studies-sleep-apnea)

Understanding how snoring is produced can help bridge the gap. Research that puts together engineers and doctors can hopefully solve that.

If Dong’s team and his research colleagues, including Dr. James Daniero, a head and neck surgeon in UVA’s Department of Otolaryngology, can understand the basic mechanics of sound produced during normal breathing, then perhaps better treatments and longer-term solutions for abnormalities may be possible.

“This work is highly interdisciplinary and involves scientific problems in the fields of biology, physics, physiology and engineering,” Dong said. “By studying biological fluid dynamics, we are trying to predict and eventually control sleep apnea and snoring.”

(Via: https://news.virginia.edu/content/when-snoring-goes-annoying-dangerous-engineer-studies-sleep-apnea)

Read on to see how they’re trying to do it.

Dong has now modeled both normal breathing and the breathing conditions of sleep apnea for people from 8 months to 80 years old. He is identifying the “force reduction,” the point when normal breathing does not provide enough air volume to keep the front and back of the airway open, resulting in collapse.

“With a normal airway, we see a very smooth channel that doesn’t vibrate much, and where there is not much force difference on the airway walls during breathing,” Dong said. “But with sleep apnea, we see fluctuations in force that become bigger and bigger, causing more and more vibration.