SusanR

On May 13, 2015, ResMed Inc. issued a new safety warning regarding use of ASV (adaptive servoventilation) for patients with symptomatic chronic heart failure and central sleep apnea.The early release of data from an international clinical trial examining the role of ASV in patients with central sleep apnea and heart failure (SERVE-HF) indicated that patients using ASV experienced a 33% increased risk of death from heart disease compared to patients who did not use ASV.

ResMed (the sponsor of the trial and the manufacturer of the ASV device used in this study) is urging physicians to identify and reassess their patients with heart failure who are being treated with ASV as soon as possible. If you are beging treated with ASV and have heart failure or reduced heart function, you should consider contacting your health care provider. Based on why ASV was prescribed and the characteristics of your heart function, your doctor may recommend that the ASV treatment be stopped or may further evaluate your heart function.

The study results came as a great surprise given that earlier, smaller studies had suggested that heart function could be improved with ASV treatment. This may prove to be another example of why we need to test new treatments with clinical trials in order to fully understand their benefits and risks.

The study is just gathering some 18 month data indicating persistent of good effects in the group who received this therapy. I have asked one of the lead authors of the research to write a small review for MyApnea.

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!

Thanks Judy! Its helpful to understand that every treatment decision needs to balance the treatment's benefits vs possible harm. In the Childhood Adenotonsillectomy Trial, a large multicenter study that compared tonsillectomy to watchful waiting for 6 months in children ages 5 to 9 with sleep apnea, we also saw a very low rate of surgical complications from adenotonsillectomy-but nonetheless, the occurrence of some problems- like transient breathing problems, bleeding, and dehydration require that the medical team and family be alert to these, and ready to intervene as appopriate. We were also very concerned about the possible increased rate of complications among children who are very overweight. It is important for parents to discuss all these issues with their doctors and understand too what to look for after a tonsillectomy. On the other hand, it is important to note that this rigorous study showed that who received a tonsillectomy had marked improvements in behavior and quality of life.

Soon we will be inviting parents of children with sleep apnea to participate in MyApnea.Org and hope we can further discuss some of these important issues.

Although there is not alot of expertise in didgeridoo playing for sleep apnea, one of the few researchers who has studied this problem will soon be posting a review of what we know and what we might learn--stay tuned!

As you say, this area highlights the broader area of training of the how improving upper airway muscle tone and strenght-- including "myofunctional therapy" (exercises that target the muscles in the mouth and throat) may improve sleep apnea. In a recent review (Sleep. 2014 Oct 28. Volume 38; issue 5. pii: sp-00423-14. Myofunctional Therapy to Treat Obstructive Sleep Apnea: A Systematic Review and Meta-analysis. Camacho M, Certal V, Abdullatif J, Zaghi S, Ruoff CM, Capasso R, Kushida CA) it was estimated that the AHI might be reduced by 50% and snoring improved after such training.However, even after pooling all the available studies, the sample size was still rather small and follow-up limited to no more than 6 months. Also there needs to be work identifying how these exercises directly influence the characteristics of the airway muscles and what is the best training exercise regimen. But perhaps the biggest question is which patients would derive the most benefit.

How the "epidemic" of sleep apnea coincides with ways we are changing our use of voice and music is a really interesting idea, too! Need to bring some musicologists and antrhopologists into the team!

Great question! The results from the study on oxygen vs CPAP (HeartBEAT Study) suggest that some quality of life measures improve more with oxygen--especially those related to physical functioning. Mood seemed to improve more with CPAP. We did not have measures of cognitive function in this study--its really too bad, as you are correct that drops in oxygen can adversely affect the brain. We know from work in patients with chronic lung disease and daytime hypoxemia that use of supplemental oxygen can improve their cognitive function. Had the "HeartBEAT" study been designed with patient input from the beginning, we likely would not have missed the chance to include a good cognition test. We need patients to help design the research from the beginning!

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?

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.

Hi Ruby- Good points. I absolutely agree with you. When offered the opportunity to participate in a clinical trial, each patient needs to determine if that trial is right for him or her. However, its interesting that many patients, even in the control arms, often perceive benefits by participating in a trial--perhaps because they might get closer attention and support than if they were not in a trial-but some trials are just not right or too burdensome for specific people. One of the great things about MyApnea.Org and the Network that PCORI is building is the idea that by building a good infrastructure-including an on-line community like ours- that we will be able to do better research, get faster and more relevant answers, and do so with less expense and less burden on the patient. Some of the new PCORI trials will be looking at questions such as which bariatric surgery is better, and whether antibiotic use in childhood leads to an increase in obesity risk, and will do so by simply collecting data on-line and using information routinely collected in the electronic health record. Our goal in MyApnea.Org also is to be able to do a lot of research using the on-line surveys, so we can minimize burden. Its a new paradigm for research.

Hi Member652017,

Thank you for sharing your experiences--I echo Sherry- you have really been through alot and Sherry provides really good advice!!.

If not done already, it may be helpful to have your doctor carefully review all the medications you are on to make sure that none are contributing to fatigue, sleepiness or difficulty concentrating (these three symptoms are often inter-related but can be due to different problems).

Some people do have "persistent" sleepiness even when treated for sleep apnea. In these instances, its important to make sure you really are sleeping well on CPAP (or other treatments)--that is that you are getting into deep stages of sleep without interuptions due to even subtle breathing problems or other causes of "arousals". It is also important that you are getting enough sleep every night (most adults need between 7 to 8 hours per night, but that can vary-some people need more).

One theory of why some patients have continued sleepiness despite what appears to be adequate sleep apnea treatment relates to the effects on the brain's alerting systems due to years of untreated sleep apnea. Do you know how long you may have had sleep apnea before it was diagnosed and treated? Understanding why some people with sleep apnea have so many problems with sleepiness and others dont is a really important question. It may be a question we as a network want to try to answer as one of our research priorities.

You may want to read the recent post by Dr. Donjalic on memory and sleep, too, to learn more about the brain and sleep!

Hang in there--take good care of yourself, encourage your family and friends to support you, and hope other members here will offer advice that is helpful, too!