SusanR

Terrific comments, Ruby and Sherry! As a physician, it was so terrific participating in such a dynamic discussion between patients and physicians. I know how rewarding it is to successfully treat a patient's sleep apnea, and see how treatment improves alertness, mood and quality of life. Unfortunately, I also know that there are many challenges in efficiently and effectively getting the right diagnostic tests and treatments to patients. In addition, long term successful sleep apnea treatment often requires patients and physicians to continue to work together to ensure that the right treatments/approaches are used over time (often adjustments are needed). Its sad to hear how often patients get one prescription for a CPAP device, encounter difficulties, and then give up. This Learning Lounge discussion was a great step for brainstorming ways patients and physicians can work to overcome the administrative (insurance), structural (how some clinics are organized) and communication gaps that exist. The American Academy of Sleep Medicine is also committed to addressing these concerns, and is working more closely with patients to identify new ways of solving problems.

We need to hear from many patients how to better partner to improve sleep health for all.

While you identify some of the key areas that can be affected by sleep apnea, it is important to recognize that there is variation in how people with sleep apnea experience the disease. It's very important to make sure we all understand that sleep apnea can have very significant health effects, and some people with sleep apnea won't even recognize these symptoms until they are adequately treated (and therefore can compare how they feel after treatment to before treatment). However, not everyone experiences all of these issues. We are trying to understand why some people are so susceptible to these problems and others are less so. Is it due to severity of sleep apnea? Age when diagnosed? Genetic factors? Other?

Patients with symptoms of sleep apnea (snoring, poor sleep, breathing pauses) or at increased risk for sleep apnea (overweight, high blood pressure, diabetes) can benefit from speaking with their health care providers to determine the most appropriate treatment-- treatments that best meet their needs.

What insightful comments! Your post also reminds me that there are many styles and different expectations--both regarding patients and providers. Perhaps each patient-provider should consider a conversation on what they each expect from the relationship, and come to an understanding on how involved the patient wants to be, and what is expected of the physician. As you point out these are relationships, and relationships can benefit when there is a good match/understanding of mutual expectations.

Thanks for sharing--too often both patients, families and providers dont' appreciate the links across these conditions. Hope the children both stay healthy!

Great opportunity for patients to provide much needed input on treatment of insomnia. Insomnia can occur by itself, or also in conjunction with sleep apnea or other sleep disorders, affecting about 10 to 15% of the population. Many studies now indicate that untreated insomnia can have a wide range of negative effects on physical and mental health, and well-being. Guidelines are used by clinicians and others in defining "best practices" for treating conditions such as insomnia. Patient input into new guideline development will help ensure guidelines reflect the needs of the patients they are developed for. Thank you Dr. Bertisch for inviting patients to be part of this process!

You ask some really important questions. A trach completely bypasses the area of obstruction (assuming it is open and working well). Therefore, it should serve as a complete "cure" for obstructive sleep apnea--that is, episodes caused by blockage of the air passages. However, sometimes sleep apnea also is due to a problem with the brain not sending the right signals to the breathing muscles, that is telling those muscles to breathe during sleep. This can cause "central" apneas--apneas occurring because there is not sufficient effort being made to breathe. Sometimes, right after a tracheostomy, the brain and body have not fully adjusted to changes the concentrations of oxygen and carbon dioxide that resulted from relieving the airway obstruction with surgery. During this period of adjustment, there may be central apneas, as the body's breathing control systems are adjusting. Usually over time, this should settle out and improve. However, it is important to know that some people with obstructive sleep apnea may actually have some component of central apneas--even when things are "stable"--that type of breathing problem may require therapies such as ASV. Also, if there is lung disease causing low oxygen levels, a tracheostomy alone may not be sufficient to correct the oxygen levels (which may also require supplemental oxygen.)

I hope this explanation was not too confusing! In any case, I would speak with your doctors and find out what the plan is for following up after tracheostomy to assure both that the trach is working well and there is not a need for additional treatment to address problems such as central apneas or low oxygen.

Good luck!

Here's a chance to suggest an "out of the box" idea for improving CPAP or suggesting new treatments for sleep apnea. Looking forward to seeing the creativity of our community!

I was so inspired to see what a difference patient participation in a professional sleep meeting can make! I have been attending these meetings as a professional for over 20 years and this was the first time I had seen patient leaders so effectively discuss their needs to leading clinicians and researchers- and also to see what an impact this made. Its hard to find the words to describe what this group brought to the meeting--fresh ideas, passion, new questions, relevance, and so much more! Thank you, SAPCON/MyApnea patient leaders for all you do!

The AHI does not always predict how well a person's underlying sleep apnea (which includes periods of partial obstruction which may not even register as a hypopnea) is being treated. I would discuss your ongoing awakenings and restless sleep with your sleep clinicians. Sometimes readouts from the machine can provide clues to what is happening, although sometimes a reassessment with another formal sleep study is needed to understand whether the airflow obstruction is being optimally treated or if another condition is causing awakenings. I hope you start sleeping better soon!

This is a really important issue--and one of the most vexing aspects is the apparent variability in how sleep apnea may affect memory. Although chronic hypoxemia and sleep fragmentation are thought to contribute - with affects on brain blood flow as well as brain functions, there is so much that is not known. I also have heard from many patients who want to identify strategies for "getting their brain back" after starting treatment for sleep apnea--this too can be an interesting area to cover. Please also see one of the articles written on this topic by one of our neurology experts, posted on the Learn page.

Good luck and thank you for work at increasing awareness!