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For the last decades, obstructive sleep apnea (OSA) has been treated with positive airways pressure devices, usually CPAP. But as many patients will attest, CPAP is often uncomfortable and can make it difficult to sleep both for the patient and bedpartner. A number of researchers, including Andrew Wellman and his colleagues at Brigham and Women’s, have sought to go beyond CPAP by developing drug treatments for OSA. A number of drugs have been tried, with no success, until recently, Andrew and his colleague Luigi Taranto, tried a combination of atomoxetine (Strattera) and oxybutynin (Ditropan). The results were surprising and dramatic; almost all the patients improved significantly. These results led to the formation of Apnimed, Inc., a company created to test the results of atomoxetine and oxybutynin in a larger number of patients.

The “Phase 2” trial of these drugs is now in progress at 12 centers across the U.S. Patients who are 25-65 years of age (up to 70 for women) and have been diagnosed with moderate to severe OSA may be eligible for treatment of 10 days. The sites where the trial is taking place are:

  • New York City, NY

  • Baltimore, MD/Washington, DC

  • Cincinnati, OH

  • Chicago, IL

  • Louisville, KY

  • Little Rock, AR

  • St. Louis, MO

  • San Antonio, TX

  • Phoenix, AZ

  • Stanford, CA

  • Los Angeles, CA

More information concerning the clinical trial can be found at ClinicalTrials.gov: clinicaltrials.gov/ct2/show/NCT03845023.

If you are interested in participating, please contact info@apnimed.com.

The MyApnea team wanted to share this exciting sleep apnea research opportunity with our readers. MyApnea is not affiliated with Apnimed.

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My Apnea by Rebeccar - 1M ago

Most people experience stress at some point in their lives. Stress can make you feel bad. Stress can also make your health problems worse. This includes heart disease, type 2 diabetes, obesity, high blood pressure, depression, even cancer, and of course, sleep! The important role of stress in health is what inspired MyApnea to collaborate on a new research study about stress. MyApnea is working with similar patient groups around the country and together we represent more than 100 different medical conditions (including sleep apnea).

The new nationwide study is called Healthy Mind Healthy You. The goal is to learn more about how mindfulness can reduce stress. The study is 100% online. All members of MyApnea can join including sleep apnea patients, caregivers, and family members.

What is mindfulness?

Mindfulness focuses on being in the present moment. At the same time, you observe your thoughts and feelings in an accepting, non-judgmental way. When you do mindfulness, you usually start by paying attention to your breathing and your body. Then you move to your thoughts and feelings.

Mindfulness comes from traditions that go back hundreds of years. This study is not related to any religion. If you participate in the study, you are randomly assigned to an online mindfulness programs: either a 3-session program or an 8-session program.

What happens if I join?

-Need internet access.

-Be at least 18 years old.

-Review information about the study and agree (consent) to join the study.

-Answer a few questions about yourself.

-Complete the 3-session or 8-session online mindfulness program.

-Fill out questionnaires during the study so we can see how you are doing.

SIGN ME UP!

If you have any questions, contact Rebecca: rrottapel@bwh.harvard.edu, 857-307-0343

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This post summarizes a recent article published in MIT, Sloan Management Review. Find the full article here

The last time we posted, we discussed the concept of patient-initiated research and the “N of 1” approach. Since then, we conducted surveys in 10 countries to learn about all types of consumer-driven product innovations, including those in the medical field. Next, we did more studies to learn about medical-product innovation development, in particular. The studies, including surveys and face-to-face discussions with groups of patient innovators, allowed us to deeply understand key issues. These issues include the strong desire of medical patient innovation groups to find ways to design and ethically conduct clinical trials to test their innovations.

Members of patient communities, like MyApnea, have a long-standing tradition of sharing useful information that may be of value to others. They do this in response to questions and share new hacks that they have found useful. There is now growing evidence that patient communities are beginning to document their hacks in an organized way. In doing so, they are converting anecdote into data. And, from data comes knowledge.

We have highlighted the activities of two such patient communities: OpenAPS and Crohnology. Members of both communities have agreed to share their common experiences with each other in a formalized way (N of 1) and have agreed to aggregate their experiences (Aggregated N of 1). The number of people participating in the collection of data is striking, in some cases, numbering in the thousands.

Importantly, the phenomenon of patient-initiated research does not exclude the collaborative research approach exemplified in the MyApnea community. Clinical researchers can get valuable insights into the issues that are important to patients and include them in their formal studies. Paraphrasing our concluding paragraph, “As the free patient innovation system expands and strengthens over time, we expect to see greater complementarity…..Patients, medical product and service providers, and government regulators all have vital roles to play in supporting the free patient innovation system and helping it develop in medically and socially valuable directions. The economic reality is that commercial producers and medical service providers will never be able to deliver everything patients need. Innovative patients can fill many of the gaps if they are properly supported. A richer set of medical innovation options will benefit patients, commercial, medical caregivers, producers and society at large.”

We hope that you enjoy reading the full article and welcome your feedback. For the complete article, CLICK HERE.

Authors: HealthHackingWithNof1 (Harold DeMonaco, Pedro Oliveira, Andrew Torrance, Christiana von Hippel, and Eric von Hippel)

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If you are like most people, the diagnosis of sleep apnea was a surprise. All of a sudden you have words and phrases like 'hypopnea', 'titration', and 'polysomnogram' thrown at you. Maybe you are told about treatment options, maybe not. Maybe you were told about other health issues that can occur or be made worse with untreated sleep apnea. If you are like most people diagnosed with sleep apnea, your main thought might be “But I don’t WANT to wear one of those breathing masks!”

Face it, we aren’t usually very familiar with most of the issues that surround sleep apnea. We don’t really know what it is, what causes it, how it affects us and what to do about it. Finding a doctor who has the time to answer our questions isn’t easy, even if we know what questions to ask. Looking online for answers can work if we find a reliable website that has wording we can understand. Being sleep deprived can make that hard.

But the MyApnea.org team came across a guide to sleep apnea in the New York Times written by Anahad O’Connor. The guide contains both graphics and additional links that present good, basic sleep apnea information.

All journeys have to start somewhere and we all know the sleep apnea road is rough. This guide is a good place to start or a way to make the journey easier to understand. It may not have everything you need but it does give information you can use to start a discussion with your doctor about what you need to know and what decisions you need to make.

What do you think about the guide? Is there an online resource you have found most useful? Let us know in the comments below.

https://www.nytimes.com/guides/well/sleep-apnea-guide

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If you are like most people, the diagnosis of sleep apnea was a surprise. All of a sudden you have words and phrases like 'hypopnea', 'titration', and 'polysomnogram' thrown at you. Maybe you are told about treatment options, maybe not. Maybe you were told about other health issues that can occur or be made worse with untreated sleep apnea. If you are like most people diagnosed with sleep apnea, your main thought might be “But I don’t WANT to wear one of those breathing masks!”

Face it, we aren’t usually very familiar with most of the issues that surround sleep apnea. We don’t really know what it is, what causes it, how it affects us and what to do about it. Finding a doctor who has the time to answer our questions isn’t easy, even if we know what questions to ask. Looking online for answers can work if we find a reliable website that has wording we can understand. Being sleep deprived can make that hard.

But the MyApnea.org team came across a guide to sleep apnea in the New York Times written by Anahad O’Connor. The guide contains both graphics and additional links that present good, basic sleep apnea information.

All journeys have to start somewhere and we all know the sleep apnea road is rough. This guide is a good place to start or a way to make the journey easier to understand. It may not have everything you need but it does give information you can use to start a discussion with your doctor about what you need to know and what decisions you need to make.

What do you think about the guide? Is there an online resource you have found most useful? Let us know in the comments below.

https://www.nytimes.com/guides/well/sleep-apnea-guide

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We all know that sometimes life is hard. Things just don’t seem to go our way no matter how much we work at them. A post from a person on the forum got me thinking about this. Not that I haven’t thought about it before but I didn’t realize that others felt the same. Sometimes, it’s the little things.

First though, let’s talk about the big things. Just some examples from my personal story but I would bet you have lots of your own. I recently retired which is a very good thing but I wasn’t prepared for the huge change in my life. For the first time my husband and I were together 24/7. Talk about an eye-opener! Then just recently I lost the insurance that had been paid by the job where I retired. It has been a real struggle to find other insurance; it costs a lot and doesn’t cover much. More recently that same insurance company has decided that my local sleep doctor and CPAP supply company are no longer in network. I have to find new ones and the closest are over 1 ½ hours away. These are some of the big things that make my life difficult.

However, sometimes it’s the little things. A letter is returned because I forgot to put a stamp on it. That new recipe that called for spices I had to go out and buy is dumped in the trash. The order I was so anxious to get is delayed. The post I worked so hard on for the forum didn’t post. I can’t find the ink pen that I really like to write with. I can’t download a book I can’t wait to read.

It can be the little things that get to us, especially when we are sleep deprived. So, I can’t find my special ink pen; I have lots of others that also write. But I want THAT one! My husband just shakes his head as I frantically look through drawers. Little things that shouldn’t matter at all can take on larger than life importance or disappointment. They tend to build up to mountainous size because we just can’t cope with one more them.

Stress can cause health issues like high blood pressure, headache, anxiety, lack of focus and depression. Guess what? Lack of sleep can cause these same things. According to many health sites, lack of sleep and stress can both cause you to look older. Another thing for me to stress and lose sleep over.

Some people find ideas for easing stress on-line. Some find a good therapist. Some turn to meditation, some to medication. For me, finding someone to listen while I vent helps the most. I am so blessed to have a couple of friends that do just that. Or distract me with shopping!

Forums like the one on this website can do the same. A good, well-run forum can be a place to ask questions, find answers and talk to others who have some of the same issues. I made life-long friends on a discussion forum for Restless Leg Syndrome years ago and we are still there for each other. One thing to remember, the people on forums are just people. Some come on and make a real difference, others ask a question and leave. When we come to the forum, we are all looking for something. It is a place where we learn that we aren’t alone.

I would be very interested in learning how you cope with the big and little things in your life. Getting rid of some of the stress might help us sleep better. And THAT, my friends, might help me look younger!

The same moon shines over us all. Ruby

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Excerpt of an article written by Dr. Suzanne Bertisch and originally published by the Harvard Health Blog.

As humans, we spend about one-third of our lives asleep. Though science has taught us about the human brain’s exquisite control of our daily sleep and wake patterns, tens of millions of Americans still don’t get the sleep they need. Nearly 20% of American adults report using a sleep medication to help them sleep, despite known side effects and information about how well they really work. Some people turn to alcohol for relief. And many have tried everything without relief.

Whether your problem is experiencing lack of quality sleep, feeling sleepy during the day, or not being able to get the seven to nine hours of sleep each night that most people need, first ask yourself, “What habits can I change to improve my sleep?”

Do you have good sleep hygiene? In general, sleep hygiene refers to practicing behaviors that promote sleep and stopping behaviors that are bad for sleep:

Nighttime tips to help with sleep

  • Maintain a regular sleep schedule
  • Go to bed when you are sleepy
  • Avoid electronics before bedtime
  • Create a comfortable sleep environment
  • Use your bed for sleep and sex only

Daytime tips to help with sleep

  • Avoid and limit caffeine, alcohol, and nicotine
  • Eat well and exercise
  • Treat health problems that interfere with sleep

To get more details on each sleep tip, read the full article! Also, find out what to do if you still can't sleep after trying these tips!

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My Apnea by Rebeccar - 10M ago

One of the most difficult things about suffering from many years with undiagnosed and untreated sleep apnea (SA) is the serious co-morbidities that came with it. People with long-term undiagnosed sleep apnea can suffer from several related diseases: cardiovascular disease or even congestive heart failure, type 2 diabetes, strokes, other sleep disturbances, and many other problems including cognitive and memory impairments. Cognitive deficits can cost undiagnosed patients their careers, financial stability, mental health or sense of well-being, and their marriages.

I was misdiagnosed for almost thirty years after I started seeking medical help. I probably suffered from some degree of SA all my life and, looking back, I think many of my family members did to. But this blog post isn’t about my long difficult journey to self-diagnosis and treatment. Rather, I want to talk about the next step in my journey: How I Got My Brain Back.

Several months into successful PAP treatment, I was suffering “blackouts”, or unaccounted periods of time (and I don’t drink). These were particularly concerning because I was living alone and traveling alone for work. There were NO warning signs and I only recognized blackouts after the fact. I underwent several days of neurological and neuro-psychological testing, but I was misdiagnosed, which actually did some harm.

I concluded I would have to help myself. I ordered literally dozens of books on SA, neurology and related issues. It was difficult to read, given my severely impaired brain, but I was desperate and determined. I learned about neuroplasticity and neurogenesis and how I could rebuild my brain. I learned that there were Parkinson patients who had kept the ravages of Parkinson’s at bay through their own efforts to foster neurogenesis.

What I Did and Why

I followed up with the Parkinson’s formula. I did exercise that moves the body through space. I also took efforts to learn new things and stimulate my brain. For two years, here’s what I did, step by step.

1: Exercise In my reading, I found that the only thing that everyone agreed would foster neurogenesis was exercise, particularly exercise that involved moving your body through space. Ballroom dancing is a great one, but there are many others. I went to the gym every day for six months straight. EVERY SINGLE DAY. And I am as FAR from a gym rat as a person can get. This was an act of sheer will. I went from water aerobics to the track, to spinning, etc. After six months of that I saw my PCP and she said, “WHAT happened to you?” Meaning: you look like a different person.

2: Learn Something NEW Two great options here are to learn a new language or new instrument. The emphasis is the novelty. A language or instrument that you are already familiar with won’t do. I took up Italian and the acoustic guitar!

3: Do Puzzles There are all kinds of fun puzzles out there to pick from to keep the brain stimulated: logic and math puzzles, sudoku, crosswords, cryptograms, and so on. I renewed my interest in doing puzzles, which had lagged when my SA was undiagnosed.

4: Use Your Treatment (relentlessly!) My first rule was to never, EVER sleep without PAP. It wouldn’t do much good to be developing new neurons if I was simultaneously losing neurons to hypoxia (lack of oxygen). Accordingly, I arranged for battery backups for my machine during power outages. I took it with me when I traveled. I never napped without it. My partner had orders to never let me fall asleep in front of the TV or otherwise without the PAP mask on my face and the machine turned on. And I did the same for him. I was fanatic about this. I also refused to take a sleep study without PAP. Since I obstruct about 83 times an hour during REM, and I desaturate to 60 or below routinely, I felt it was life threatening for me.

The Test

After about 2 years, I put myself to a test. By way of background, I believe that SA caused me to lose my homing pigeon worthy sense of direction. I had always known exactly where I was spatially and now I didn’t. I really missed that capability. So, after two years of hard work, I did a test to see if my lost sense of direction had improved: I drove up the coast of Connecticut to a string of small coastal towns right off I-95. One after another, I drove out to the beach in each town and, without using a GPS or map, retraced my steps back to I-95, and went on to the next coastal town. When I had successfully done that with about 7 towns, I concluded that to a certain degree, I had succeeded in rebuilding my brain.

Sharing Solutions

There is no doubt that many other motivated patients have done things to get back their mental or physical abilities back after treatment for SA. This is my story, but I want to hear more about what has worked for others. If we could share these techniques, we could help patient still struggling with the same issues. This is particularly important because the medical establishment has yet to address this important part of SA treatment and recovery.

Please share your approach to ‘Getting Your Brain Back’ in the comments section below. Then, as a group, we can learn what works and help each other get moving forward!

This article was written by Sarah Gorman, a current member of the MyApnea Multi-Stakeholder Engagement Panel.

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Excerpt of an article written by Kim Olson and originally published by HeartBeat Magazine.

In October 2004, John Vosberg called his girlfriend, Dianne, to cancel their date. “I won’t be able to see you this weekend. I’m in St. Cloud Hospital. I had a heart attack.”

John had arrived at the hospital just in time to save his life. Some arterial plaque had ruptured, blocking an artery, and a stent was inserted to hold the vessel open.

Eight years later, Dianne — now John’s wife — urged him to see a doctor about a different issue: his snoring and daytime sleepiness. “On my drive to work, I struggled to stay awake,” says John, who lives in Pine City, Minnesota, and is an active member of Mended Hearts Chapter 10 out of St. Cloud (the “Granite City Beaters”). While watching evening television, he needed a “pre-bed nap.”

John underwent an overnight sleep study that measured his brain waves, eye movements, blood oxygen levels, breathing, heart rate and blood pressure. Two hours into the test, an attendant noted that John had severe sleep apnea, interruptions in his breathing during sleep. She connected him to a continuous positive airway pressure (CPAP) machine, which delivers a constant stream of air through a facemask. “I couldn’t believe how much better I felt in the morning,” he says.

Later, while visiting his doctor to get his own CPAP machine, John joked, “There are only two ways that I’m leaving here: with my machine or a police escort.” He ultimately received a heart transplant in 2016. Now 61 years old, his new heart and CPAP machine have given him a new lease on life.

The heart connection: John’s sleep apnea and heart disease may seem unrelated, but experts suspect a connection...

Read the full article to learn more. MyApnea researcher, Dr. Redline, explains the connection between sleep apnea and heart health and talks about what the MyApnea community is doing to help!

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https://myapnea.org/image/znJEze

Patients can be diagnosed with sleep apnea at home using a home sleep apnea test (HSAT) or in the sleep lab with polysomnography (PSG). Several studies have found that medically uncomplicated patients at high risk of obstructive sleep apnea that get diagnosed either way have similar CPAP adherence and patient-reported outcomes. For this reason, the American Academy of Sleep Medicine recommends that either method can be used in these types of patients.

A team of MyApnea researchers and patients wanted to learn more about this topic. In a structured research setting, patients do well with both types of diagnostic tests. But what about in the real world? Are patients equally satisfied with both options?

The surveys you complete here at MyApnea.Org ask about your experience getting diagnosed and treated outside a structured research setting, in the real world. Survey responses were analyzed from 2563 MyApnea members regarding satisfaction with sleep study experience. The results of these surveys showed that patients who had their studies in-lab were more likely to be satisfied with their experience than patients who had a home sleep test. Specifically, 71% of patients who had their studies in-lab were satisfied with their experience versus 60% of patients who had a home sleep tests. These new results suggest that the comparison of in-lab PSG to home-based tests needs to be re-examined. More “real-world” studies assessing patient preferences and satisfaction regarding sleep apnea care are needed. You can read more about these published research findings.

The MyApnea research team wants to thank you for your contribution. We were able to learn something new about sleep apnea diagnosis because you completed the research surveys. Together, we are helping the sleep apnea community continue to learn and improve. Our research team just launched new surveys. Contribute to new research today by visiting the research page!

"Sleep Studies" by "National Heart Lung and Blood Institute (NIH)" is under the public domain.

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