SusanR

Hi Ed,

Great to hear from you. It would be good to learn of your ideas for how MyApnea.Org can reach out to members of your A.W.A.K.E. group- the larger the community, the greater our power.

This will be a wonderful opportunity for a patient with sleep apnea to help shape the future of sleep apnea research. SAPCON also will provide some future training for interested volunteers in research methods appropriate for this type of patient-driven research partnership. Would love to hear from you!

Terrific!!! Lets get a team together to develop a survey and learn more and help the very people who are working to help others!

It would be very interesting for the sleep technical societies to consider a survey of its members to understand how many have OSA (diagnosed, undiagnoed, or at risk)- to improve awareness, personal health of its members, and possibly to create a stronger, healthier work force (who might also better relate to their patients).

Welcome Donna and others! This conversation thread shows the range of responses people have with CPAP. In some people, the transformation in alertness and energy is almost overnight (no pun intended!). In others, there is improvement, but some sense of ongoing tiredness, even with good CPAP use. It has been speculated that residual tiredness may be from some irreversible effects on the brain, but there are few concrete data to support this. It also has been speculated that perhaps in patients with residual sleepiness, the sleep apnea is not being completely treated, or there is another sleep problem, or just plain not enough time to sleep. I think a great research study is one which would identify the reasons or causes for differences in "residual sleepiness/fatigue" on CPAP--would some people benefit from different treatments, or do we mostly need to get sleep apnea treated earlier? How does the age when you get sleep apnea influence long term health and brain function? What do you all think? And yes, sleep apnea does run in families and there is active research looking at the genetic basis for sleep apnea.

In completing the survey, I was very interested to see the feedback graphs available at the end of the survey (after completing the survey, find the questions you are interested in, and click to see how your responses to compare to others). I was surprised to see how many members of our community report insomnia and depression! This brings up the complexity in treating sleep apnea, and the need to make sure that the many health needs of patients with sleep apnea are addressed comprehensively. What do you think about the survey graph responses?

Just saw your post- As Will and I were discussing, this has been tested in a few small studies. The data suggest that in selective people improvement may be seen. In addition to didgeridoo playing, others have tested various vocal/breathing therapies- also with a suggestion of some benefit. One of the challenges in this research is identifying how much sleep apnea improvement qualifies as a "success," and another relates to identifying which specific patients would benefit. There has been surprising little research that has tried to combine different treatments, which might include vocal and breathing exercises, and then tested to see which patients get the best relief.

Meanwhile, here is one study you might want to check out. Note that the overall body mass of the patients in this study were in the "normal" range, so that study did not examine how well this might work in heavier patients.

Didgeridoo playing as alternative treatment for obstructive sleep apnoea syndrome: randomised controlled trial BMJ 2006; 332 doi: http://dx.doi.org/10.1136/bmj.38705.470590.55 (Published 02 February 2006) Cite this as: BMJ 2006;332:266

We are just slowly ramping up. Please spread the word! We can do it together!

Thank you all for these posts! You provide a critically important patient perspective on how challenging managing "complex" sleep apnea can be-and the need for more effective and streamlined treatments. Its very possible that some of the basic mechanisms that result in complex sleep apnea are different than the more "garden variety" sleep apnea, and thus need a much more tailered treatment. MyApnea may give us the opportunity to begin to work towards better solutions.

Great question! There is more and more research examining how selective deposits of fat increase sleep apnea severity. Early focus was on the stomach, then the neck, and now the tongue. I dont know of any research looking at how tongue fat can be directly manipulated. However, there is interest in how general throat and breathing exercises might help (at least mild cases) of sleep apnea. Did you know that its been suggested that didgerdoo playing can help snoring?