2018: A Groundbreaking Year for Narcolepsy Research & Drug Development

“We are witnessing a revolution of our understanding of narcolepsy.”

– Dr. Emmanuel Mignot, M.D. Ph.D.,
Director of the Center for Sleep Sciences and Medicine, Stanford University

2018 was an exciting year for narcolepsy research and drug development. Here’s my top six research highlights of 2018 that you should know about!

1. Narcolepsy & the immune system

Photo Source: Nature

This fall, two new publications offered key insights into the biological underpinnings of type 1 narcolepsy with cataplexy. These findings could lead to new diagnostic procedures and preventive strategies in the future. 

In September, Latorre and colleagues’ ground-breaking Nature publication indicated that particular immune cells (called T cells) may be involved in the attack on hypocretin/orexin neurons in type 1 narcolepsy.  These findings further the leading theory that narcolepsy may be an “autoimmune condition.” (Here’s a great lay-friendly summary.)

In December, Luo and the Stanford University group’s publication in the Proceedings of the National Academy of Sciences offered interesting complimentary findings, suggesting that these immune cells may mistakingly attack hypocretin/orexin neurons that “resemble” certain pieces of flu virus. The research is more complex and exciting than my brief summary, I recommend Dr. Emmanuel Mignot’s  recent Thrive Global article to learn more.

2. Classifying type 2 narcolepsy without cataplexy 

Ruoff and colleagues’ Journal of Clinical Sleep Medicine publication raised important awareness about the challenges in classifying and diagnosing type 2 narcolepsy without cataplexy (NT2). The study indicated that repeating the MSLT (the daytime portion of the 24-hour sleep study) led to inconsistent results for narcolepsy type 2 cases, changing to idiophathic hypersomnia 26% of the time, or to a negative MSLT 57% of the time.

This is not a good situation, but researchers are starting to use “big data” and “machine learning” to re-examine how we might better cluster and separate narcolepsy and IH cases by key characteristics and measurements. See Zhang’s Nature publication. Important discussions are underway and I believe this will be an evolving space in the coming years. For those facing a diagnosis “in between NT2 or IH,” please remember your experience is real and you are part …

2018: My Year in Review

2018 was a year unlike any other. I invested in a few new suitcases, which helped me get around easier since I don’t think I’ve ever traveled so much in one year. Here are some highlights, challenges, favorite reads, lessons learned and dreams for the new year!

Highlights of 2018:

  1. Taking the leap to become the first employee of Project Sleep was one of the biggest, boldest changes I’ve made in my life
  2. Traveling to Taiwan, Sweden and Australia – wow! 
  3. Attending the International Symposium on Narcolepsy
  4. Participating in the Suffering the Silence video & photo shoot
  5. 15 Speaking Engagements – sharing my story of narcolepsy in various settings from high school and college classrooms to hospitals and conferences
  6. Many of my favorite moments are intertwined Project Sleep’s 2018 Accomplishments

Biggest Challenge of 2018:

Recording the AUDIOBOOK for Wide Awake & Dreaming: A Memoir of Narcolepsy (finally)!! Going into this, I had no idea how much work would be involved in learning how to narrate my own book. I mean, I wrote it, how could reading it be challenging?!  I shared funny behind-the-scenes stories about the process in this video

Favorite Reading of 2018:

  • Secret Stairs of Los Angeles by Charles Fleming – I totally fell in love with exploring Los Angeles through this book, I’ve completed 8 of the 42 walks so far! 
  • The Humor Code by Peter McGraw and Joel Warner – thought-provoking in thinking about how narcolepsy became a “joke” and also in thinking about cataplexy’s connection to humor.
  • Stop Raising Awareness Already  by Ann Christiano and Annie Neimmand. This article blew my mind, so I subscribed to Stanford Social Innovation Review and now I read each issue cover-to-cover. This magazine is helping to improve my understanding of the non-profit sector and behavior change campaigns. 

Favorite Meal of 2018:

Does gummy candy count as a favorite meal?! Probably not… Hmmm…  😛 

I fell in love with the Vete-Katten bakery/cafe in Stockholm and spent a few leisurely mornings here – reading a book, sipping oat-milk lattes, and eating cardamom rolls and coconut chia puddings. This …

Improving Sleep Quality in Parkinson’s: Is Levodopa-Carbidopa Intestinal Gel Effective?

New research found that patients with advanced Parkinson’s disease who were treated with levodopa-carbidopa intestinal gel infusion experienced an improvement in sleep quality, according to a review published in Parkinson’s Disease.

The study sample included 7 consecutive participants who received an implant for continuous levodopa-carbidopa intestinal gel infusion; dosage was titrated individually until greatest motor control was attained. The investigators performed overnight polysomnography before and after 6 months of treatment, reporting on parameters including sleep efficiency, wake after sleep onset, REM sleep and non-REM sleep, snoring sounds, apnea-hypopnea index, arousals, leg movements in sleep, and more. The investigators also administered questionnaires at baseline and follow-up, including the Epworth Sleepiness Scale, fatigue scale, Pittsburgh Sleep Quality Index, Beck Depression Inventory, and the Hamilton Anxiety Rating Scale.

Motor fluctuations and symptoms showed significant improvement after 6 months of continuous levodopa-carbidopa intestinal gel infusion. Polysomnography results showed improvements in generalized sleep efficiency; however, changes observed in sleep parameters from baseline to follow-up were not considered statistically significant.

Get the full story at www.neurologyadvisor.com

from Sleep Review http://www.sleepreviewmag.com/2018/12/sleep-quality-parkinsons-levodopa-carbidopa-intestinal-gel/…

Sleep Training a Newborn With a Toddler in the House

Teaching a newborn the skills they need to sleep independently can be a little tough on a parent, but the difficulty level raises significantly when there’s another child in the house. Letting a baby cry for a few minutes at a time can be really disruptive for a toddler in the adjacent room.

So what are you supposed to do with your toddler when your newborn is learning to sleep through the night? Well, there’s no magical solution to this problem, but I’ve got a few tips in today’s video to help you get through it as quickly and easily as possible.

Rather read than watch? Click here.

Tips To Stop Snoring

There is nothing more annoying at night than to hear someone snoring. Like how would you be able to sleep when the loud snoring of your partner keeps you from drifting off to dreamland? As annoying as it may be, snoring is actually a medical problem that needs to be addressed by seeing a sleep doctor or a snoring specialist.

If you are clueless as to what happens when you are snoring in your slumber, you essentially cease from breathing from time to time when you snore. Your brain processes this medical dilemma and has to choose whether to breathe or keep you alive, that’s how risky your life is in your sleep every single night.

Snoring used to be the butt of jokes but increased awareness on how serious of a matter it is and teaches us to take this condition seriously. It is no longer a laughing matter and one should take the time to see a sleep doctor to get examined and treated right away. While there is no real cure for snoring, there are ways to reduce its risks and improve your sleep.

Snoring occurs when the upper airway muscles relax, obstructing a patient’s airflow, which causes noisy tissue vibrations during inhalation. In their research paper, “Smartphone-based delivery of oropharyngeal exercises for treatment of snoring,” Brian Krohn, PhD., Adam Black, PhD., and Dr. Umesh Goswami, MD, prove that these noisy vibrations can be reduced by performing an oral therapy designed to strengthen and tone specific muscles within the upper airway.

Snoring continues to be the most common complaint in sleep medicine clinics, affecting 35 percent of all adults. In addition to negatively impacting sleep partners, snoring may be a predictor of obstructive sleep apnea, which can lead to high blood pressure, inflammation, and numerous other health risks.

(Via: https://www.prnewswire.com/news-releases/new-research-shows-you-can-reduce-snoring-by-playing-a-smartphone-app-300722369.html)

The gold standard of treatment for snoring is CPAP, which stands for Continuous Positive Airway Pressure. It involves the use of the bulky CPAP equipment in your sleep. It is the least comfortable but it ensures you get that oxygen you need that is vital to …

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Transitioning From 2 Naps to 1

Around the time of your baby’s first birthday, they’re likely to start needing slightly less daytime sleep. This usually means they can switch from two shorter daytime naps down to one longer one.

This can be a very tough transition to make. Pushing their nap time later in the day can lead to overtiredness, but letting them sleep too early in the day means they’ll be awake for too long before bedtime.

In today’s video, I’ve got a few tips to help you find the balance between these two undesirable scenarios and get your baby down to one nap a day without messing up their schedule.

Rather read than watch? Click here.

The Risky Life Of Snorers

Many people are annoyed by snorers because their sleep noise prevents them from getting a good night’s sleep. Unfortunately, this isn’t just an irritating habit but a medical danger that requires medical attention. Snorers actually experience a closure of their airway in their sleep because of the vibrations triggered by snoring, meaning they can be deprived of oxygen for several seconds throughout the night. We all know that breathing is life and just the thought of not breathing in your sleep because of snoring due to sleep apnea can scare many people out of their wits.

Snoring is often caused by a structural anomaly in your airway that prevents people from breathing with ease when they are unconscious. Along with it are medical risks mainly from the lack of oxygen in the brain. Aside from that, snorers also suffer from poor sleep quality that predisposes them to accidents and the inability to focus and do better at work or in school because they feel sleep deprived and get so drowsy in the middle of the day they are unable to finish their assigned tasks.

Someone might snore sporadically if they’re suffering from allergies or a cold, if they’ve been drinking, or even in some cases if they sleep on their back. A more regular snoring habit can come from chronic untreated allergies, weight gain, or a structural problem in someone’s nose or throat.

Loud snoring, of course, creates discomfort for the snorer and dismay for anyone who happens to share a room with them. But snoring can sometimes be a more serious problem — it’s one of the primary symptoms of a common medical condition called sleep apnea.

In a person with sleep apnea, their airway closes often enough to impede the flow of oxygen to their body and brain. That’s difficult to live with on a day-to-day basis, as it ruins sleep. It also increases risk for cardiovascular problems like strokes and heart attacks, as well as a number of chronic medical conditions including diabetes and high blood pressure.

(Via: https://www.businessinsider.com/how-to-stop-snoring-2018-5)

There is no cure for sleep apnea …

Insomnia – Causes, Symptoms and Treatments

It can be hard to think of an inability to fall asleep as a sleep disorder, but that’s exactly what it is. In fact, insomnia is the most common of the sleep disorders according to the American Psychiatric Association.

You would be hard pressed to find an adult who hasn’t experienced insomnia at some point in their life. For most, insomnia is an occasional, and temporary, inconvenience. But, for others, insomnia is an ongoing problem that can negatively impact their health, their well being, and their quality of life.

 

What Is Insomnia?

Any of the following qualify as insomnia:

  • You have a hard time falling asleep.
  • You have a hard time staying asleep.
  • You wake up earlier than you want to, and then you can’t get back to sleep.

On top of that, insomnia can be split into two basic types.

If you have primary insomnia, there is no underlying cause of your sleep problems, like a health condition. Your inability to sleep is the main problem.

If you have secondary insomnia, your insomnia is caused by something else. The underlying cause could be a health condition, like asthma, depression, arthritis, or nighttime heartburn. A medication you’re taking could be keeping you from getting the sleep you need. Using stimulants, like caffeine and nicotine, can also lead to secondary insomnia. And your sleep problems could also be the result of alcohol consumption.

Insomnia can also be further categorized based on how long it lasts, and how frequently it occurs.

First there’s acute, or short term, insomnia. Many people experience this type of insomnia, which can last for one night or a few weeks. It is often, but not always, caused by something like stress, or a traumatic event.

Then there’s chronic, or long term, insomnia. This type of insomnia can last for months, or even years. And, in order to qualify as chronic insomnia, the sufferer has to have trouble sleeping at least three nights a week.

With chronic insomnia, the insomnia itself is often the primary problem. But it can also be caused by something else, like …

Weaning Off the Swaddle

Swaddling is often a great method of keeping a newborn baby comforted and settled when they’re sleeping, but it eventually outlives its usefulness.

But quite often, babies develop an attachment to the swaddle and frequently wake up when they inevitably kick their way out of it in the night.

Today, I’ve got a step-by-step strategy for you to gently wean your baby off the swaddle and learn to fall asleep, and stay asleep, without needing to be wrapped up.

Rather read than watch? Click here.