What would you like to learn about?

We are noticing a lot of great posts in the MyApnea.Org Forums about help with mask fit, different types of treatment, tips for overcoming some of the issues that members experience with treatment, and general positive and supportive posts about member experiences. Great job, and keep the conversation going!

As a sleep technologist and sleep educator, I would like to know what educational information or materials you think might be helpful to our community. If you have checked out the “Learn” section of MyApnea.Org, then you know we have information about sleep apnea and PAP devices. Are there other topics you would like to learn about? Let us hear from you!

Dan Mobley, RPSGT, CCSH is a Senior Project Manager, Sleep Technologist and Sleep Educator at Brigham and Women's Hospital

Is there a way to find out what research is being done in this area? I know that would cover lots of ground at many, many different hospitals and clinics. A great frustration for me is wondering if anyone is actually doing research that affects me and the final outcome of that research. How do researchers decide what to research? Where does the information go from the research? Just the same for clinical trials. What were the outcomes and how was that specific trial decided on?

So often, what little information I can find, it seems the research/trials are far off base from what we need. That is why I am so excited that this site is patient-driven. We can use this venue to get the word out about what we think is important--just as it says in your post.

Hey Dan, I finally joined!

Hi Ruby,

In general, you can find out about the latest sleep research being done in sleep apnea by visiting a free service by the NIH call Pubmed. http://www.ncbi.nlm.nih.gov/pubmed. It will give you every research paper or abstract ever done on a subject. It will also tell you whether the full study article is available for free or if you need to pay for it. Another way to track the lastest research and see article in layman's terms is simply do a Google search for sleep apnea and hit "news." You can then set an alert that will be sent to you with as news happens on any topic you wish. As to how a researcher picks a certain subject or where what is done with the research is probably too broad to answer here.

At MyApnea, research topics are decided by the Network members and refined by our Patient Engagement Panel and then our Steering Committee, which includes people with sleep apnea. Some of the topics will be part of research grants that the MyApnea.org researcher pursue and others we will publish and suggest other researchers to pick up for their own research grants. For any data from MyApnea.Org that is used for research, we put the stipulation to the researcher that they need to come to the network for further ideas and then report back to the network once the study is published to discuss the results and allow an opportunity for questions. Hope that helps.

Another way to find out what is happening in research in real time is to go to the NIH RePORT: http://projectreporter.nih.gov/reporter.cfm. You can search topics, investigators, etc.

You can also go to clinicaltrials.gov that reports every registered clinical trial-active and completed. Almost all trials are now registered as its a requirement for publication.

You can also get info from www.sleepreviewmag.com. I've been receiving the monthly magazine for years. They also send updates to your email.

Joe

Thanks for all the information! I'm so glad I asked!

Welcome, Member312135!

Great information here on where to find information on research studies. Please let us know if there is specific educational material you would like to see on MyApnea.Org!

Dan

Ruby, Also try Scholar.google.com for any research on any issue.

Hey, Dan -- I'd like an up-to-date sheet with citations to research to give to docs who don't take this seriously (my elderly mom's doc actually shrugged when I was helping her) about what the co-morbidities are. "What we know so far about how poor sleep impacts our health:" or some such. Lots of docs don't listen to their patients, because, really, what do we know? (Never mind I was a clinician myself.). SO glad that PCORI and this project are working to change all that!

What a great idea! Lets work together to create a series of fact sheets for patients to use on a few topics: The Need for Sleep For Good Health; The Impact of Untreated Sleep Apnea on Health and Well-Being...other ideas?

Hi. I would like to see more information on Central and Mixed Sleep Apnea. A lot of info you find on the internet, and there's not as much info as for OSA, is conflicting or just plain wrong.

Thanks, Jorja. We can add that to the list of fact sheets!

Hi Dan,

What a surprise. I have been visiting this site for the past couple of months and never noticed a category for "learn."

When I am using the site, the categories I see are general forum, research, news, build my apnea.

Now that you have pointed it out, I will go to that link for further reading. To learn more about sleep apnea, I have just been doing "google searches" and concentrating my reading on mainstream medical resources vs. unusual "cures."

At the moment, I have no further questions, because I have not explored the link at the bottom of the myapnea site.

Maybe I was just 2Sleepy before 😉

We will do a better job of highlighting LEARN and will be adding alot more to that area. Let us know what you are most interested in!

I just read the article that Dan posted from the Cleveland Clinic about screening people for OSA prior to surgery. I would be interested in reading any current article that would help me stay updated about OSA. I have now had the chance to look over the "Learn" link on this site. The info is basic, so anything that builds on that basic knowledge would be interesting to me. I figure that if I have the diagnosis, I might as well be as informed as possible.

Thanks

Oh, boy, what a great ask/suggestion -- some of us are putting together a reading list! So check back in a while, but until then, as a patient myself ... If you want to read some actual research, go to scholar.google.com and do a search. But the book(let) that made me misty-eyed with gratitude was by Mack Jones, MD, formerly a neurologist who himself had apnea and went through misery getting it treated: Deadly Sleep. There are other books. Try the website of Dr Stephen Park, an ENT who is generous with hugely helpful information, resources, and interviews with "experts" : doctorstevenpark.com

Also the American Sleep Apnea Association site at sleepapnea.org can be useful. Depends on just how much and how detailed the info is that you want. Good luck!

As a newly diagnosed person who has been given a C-PAP machine, I'd be interested in community reviews of the types of devices they are using. My physician plugged me into a ResMed AirSense 10. Will use it for the first time tonight.

Would be interested in hearing from others who have used the ResMed AirSense 10 . . . as well as from people using other devices. Also, I've been given a pillow device for the nostrils, rather than the full face mask. I'd be interested in pros and cons of one over the other.

Dear 2Sleepy-

Are there specific topics you are most interested in? I would be glad to highlight reviews in those areas. We will soon have more information on the Learn site and want it to have the best info for you. Check the Research forum posts for updates on research and topics too. Two of our members (experts in these areas) will be posting on didgerdoos and on the new Inspire device.

My colleagues at Harvard have created a site with alot of information here:http://healthysleep.med.harvard.edu/portal/. I hope you find it useful-let us know.

Dear SeattleGrant - I am newly using the ResMed brand new bi-level device and just started using nasal pillows, instead of my full-face mask, since I have had one of 2 surgeries to fix a non-functioning nose. The full-face mask allows you to still receive the air you need if you stop breathing through your nose (for instance, it gets congested during the night) and start breathing through your mouth (for several reasons). I find the particular nasal pillow mask I have extremely comfortable except when my allergies override my antihistamines -- then I swap over to the full-face mask to be sure I am getting some air. I recommend always using the humidifier unless you live in an already-humid and warm enviro. It makes a huge difference.

Also, if people's airways allow (and remember your airway begins in your nose -- not all docs pay attention to that), the nasal-pillows versions are much less claustrophobia-inducing than the full-face masks, or even the nose-only masks (like a mini full-face in shape, only it doesn't cover also your mouth). I know a number of claustrophobic people who could not tolerate PAP treatment until their noses were examined, fixed where necessary, and they could use the pillows. Also, having the pressure reduced when you breath out helps reduce the claustrophobia, but that probably belongs on another thread.

Don't forget to pay attention to your nightly AHI numbers, and compare how you feel upon awakening with the numbers, which should always be below 5 (which I think is still too high, but is presently industry standard for "okay") -- do you feel better when the numbers are down? Are your numbers ever higher, and if so, do you notice anything? That machine you have should give you plenty of data, and if you go online and sign over your data to ResMed, they will give you access to nightly data that you cannot see on the machine. I have not yet done that, but my doc shows me some of the graphs in his office.

The apneas are not always the only thing that need management in your sleep -- but you have a machine that should help you a great deal in managing better. Good luck!