thanks so much for these insightful comments. It is challenging to design a set of surveys to capture the full spectrum of experiences of people in the MyApnea community. We will try to reorganize the questions so they are presented more clearly for each specific stage of treatment. Many thanks-- these are very good points and we hear you!
Often doctors and nurses do not understand what aspects of health and functioning are most important to patients. While being "alert" and being "awake" are both important, it is important to know what patients think of when hearing these words--what do they mean to you? What is important to you as a motivator for getting treated for sleep apnea or another sleep disorder? We would love to hear from YOU!
Agree with SleepyChief! Also to add-- many sleep centers either arrange to have access to these reports, so they can directly view the reports generated by the machine, and/or arrange to receive reports on the effectiveness of treatment and adherence from the DMEs. It can be very rewarding to take a pro-active role in discussing the CPAP machine feedback with your doctor--make sure you are both satisfied with what the numbers say as well as how you are sleeping/feeling.
Hello- sorry to hear about your problems. One possibility is that the pressures are not optimized (especially as pressure ramps up) and you are still having obstructive apneas. However, your intuition is correct to ask about central apneas--some people have central apneas that are "unmasked" once the obstructive apneas are treated with CPAP. Sometimes this problems settles out as your body adjusts to the pressure and new breathing pattern. So, it is possible this will get better soon. Other times, the appearance of central apneas may indicate a condition known as "complex sleep apnea". You may want to read about a patient and physician's experiences with this at: https://myapnea.org/blog/complex-sleep-apnea, noting that until you are re-evaluated it is hard to know which problem you are dealing with. Many PAP machines transmit your breathing patterns to "cloud" that allows your doctor to get real time information on how well your CPAP is working. You can check with your doctor in case she or he can remotely check that information and make an initial estimation of what is happening. So, please talk to your sleep provider. I hope things get better quickly!
Your post shows important insights and motivation- which are two very important steps in getting control of your apnea and improving your sleep. I hope you are able to speak with your PCP today who may want to evaluate your overall health problems as well as ask for an expedited appointment with a sleep physician. Some sleep centers have slots to quickly accommodate patients like you. If you have trouble getting to a sleep clinic and let us know where you live, we can try to help facilitate this. You are not alone! Take care and hope to hear positive things soon.
Thank you, Dr Demko, for your wonderful perspective!! So many patients (and some doctors) don't understand the role of oral appliances for the treatment of sleep apnea. This posting is very helpful!
Thank you Dr. Demko for the excellent posting on oral appliances found: https://myapnea.org/blog/oral-appliances-an-experienced-dentist-shares-her-perspective
Thanks for the expert input, Dr. Demko! I am sure many MyApnea members appreciate this.
This is a great question.
Increasing evidence indicates that dental devices (also known as oral appliances or mandibular advancement devices) can play an important role in the treatment of sleep apnea. In fact, there have been over 70 clinical trials that have evaluated various oral appliances compared to no therapy, compared to alternative oral devices (there are many models), or compared to CPAP. In 2015, the American Academy of Sleep Medicine published an updated guideline on use or oral appliances ( Journal of Clinical Sleep Medicine; 2015: 11(7): pages 773-827). They concluded that while CPAP is generally more effective in reducing the AHI, many patients with mild to moderate obstructive sleep apnea benefit from oral appliances with improved symptoms, better sleep quality, and reduced numbers of apneas during sleep compared to no treatment. Even some patients with more severe sleep apnea may benefit. Custom-fit devices, which can be "titrated" to meet specific patient needs, was recommended over non-custom devices. A summary of the research on this area led to the recommendation that oral devices be considered for patients who do not tolerate CPAP and that use of these devices should be overseen by both a sleep specialist and a qualified dentist. It is important that response to treatment, symptoms and possible side effects are closely monitored, and changes made as needed.
There are also other treatments for sleep apnea--including hypoglossal (tongue) nerve stimulation and various surgeries. The effectiveness of these depends on a number of factors, such as a person's anatomy and disease severity.
In looking to understand your options, speak to your sleep doctor and discuss any concerns about CPAP. Ask about other options and whether your doctor thinks you are a possible candidate to be further evaluated by a qualified dentist (for an oral device) or a surgeon (for surgery).
I will be asking some of our experts in this area to contribute future blogs to further discuss these topics. You can use the search button to see what other patients say about their treatments.
Beautifully stated! The word "discovery" was used because so many people who did get together for the Learning Lounge had not previously realized that doctors and patients have common goals. Although this should have been obvious, it was not. We hope that more dialogue will help generate more cooperation.