SusanR

Hello, It is so good to hear that you are using your APAP regularly! Several things to consider: First, ensure that your APAP is working optimally to reduce or eliminate apneas and hypopneas and allow normal oxygen levels during sleep. Ensuring that your APAP device is working for you is important. The device can give a "read out" of whether the apneas and hypopneas are adequately treated- having your health care providers check that periodically may be very helpful. Sometimes, a second sleep study is needed to make sure that your sleep apnea is being well treated. Second, anyone may develop heart disease, whether or not they have sleep apnea, and whether or not the sleep apnea is treated. You may want to speak to your health care provider regarding your symptoms to make sure the symptoms are not related to an irregular heart rhythm, blood pressure problems, problems with blood flow to the brain, or other problems. There are tests your doctor may consider that would allow him or her to evaluate for each of these possibilities, depending on which areas may be most appropriate for you. Good luck and I hope all works out for you.

Hi Kathy,

Thanks for so vividly describing your experiences. Although I have heard alot from patients about their feeling about diagnosis and CPAP masks/machines, your description crystallizes the many very personal issues that may arise. After reading your blog, clinicians will better appreciate the challenges their patients face, and I will encourage my colleagues to read this carefully. I look forward to learning more from other patients like you, too, and hope patients will help identify new ways to approach treatment.

-Susan

Dear Courageous-

The problem you described is a very real challenge, which unfortunately does not have a clear answer. The results of the ResMed study showing that there was an increase in mortality in patients with both central sleep apnea and low ejection fraction came as a surprise to many. This led to the strong recommendation that doctors contact patients with Central Sleep Apnea and heart failure with a low ejection fraction (<45%) who were prescribed ASV, discuss the risks of therapy, and consider stopping this treatment. Elsewhere on the forum we have discussed the results of the trial (see https://myapnea.org/forum/safety-alert-issued-for-asv-treatment-adaptive-servoventilation-asv-in-patients-with-heart-failure-and-central-sleep-apnea and https://myapnea.org/blog/complex-sleep-apnea). There are a number of experts who have pointed out that there may be various explanations for the results of this one large trial, and have argued that many patients appear to benefit from ASV despite the data reported in this published study. One issue that may be relevant to you is to understand how much of your sleep apnea is central versus obstructive. The findings from the ResMed trial were most specific for central sleep apnea. Making a decision of whether to continue ASV or not should be done by you and the doctor who understands your sleep apnea - the two of you together can evaluate whether you seem to have derived benefit from the ASV or whether the safest course is to discontinue this. Looping in a heart failure doctor may also be useful.

At this time, there is no evidence that CPAP or BIPAP is any safer than ASV for treatment of central sleep apnea and heart failure. In fact, an older study from Canada suggested that use of CPAP in patients with central sleep apnea and heart failure was associated with an early risk of increased mortality. There is another large multi-site study underway evaluating the Philips ASV device--however, only some of the patients in that trial have central sleep apnea. Those findings hopefully will be out in the next 2 years, and hopefully will shed more light on this question. Meanwhile, my colleagues in sleep medicine are working to better understand how to better treat patients with heart failure and central sleep apnea and even looking at the role of older treatments such as oxygen.

I am sorry we don't have better answers for you---but please continue to talk to your doctors and whatever decision you make, make sure that you and your doctors are closely monitoring your sleep and heart health.

The American Sleep Medicine Foundation has funded my colleagues at Harvard and Brigham and Women's Hospital to test how useful several of the available sleep apps are, particularly understanding which ones are likely to be used regularly and over time. We will keep you updated on our results. We also are interested in what information our community wants to hear about regarding apps and wearables. We will be posting a survey--and hope you will let us know what you are most interested in!

First, Its really wonderful to hear how improved your blood pressure and sleep quality are with CPAP!--and how diligent you are at using CPAP. Keeping blood pressure from elevating is one of the most important things for preventing heart disease and strokes. And of course, sleeping more soundly and feeling alert are essential to feelings of well being.

As far as weight gain--your observations are very astute. For years we all hoped that with increased alertness and energy levels, people using CPAP would expend more calories and lose weight. Although we sometimes see that, a few studies now are reporting modest weight gain with CPAP. One idea is that the previous work of breathing during sleep--repetitively trying to breathe against a blocked air passage---goes down once the throat is kept open with CPAP. So those calories you spent struggling to open your throat are no longer being burned up. Its far better to breathe than to struggle to breathe, though! My colleagues and I are now even more earnestly counseling our patients on diet and exercise as adjuncts to CPAP. Kevin Gleason wrote about this issue of weight gain on our Research page (check that tab out).

I have not heard of the numbness before in relation to CPAP. Trying to make sure you are as comfortable as possible and not staying in one position while on CPAP may be helpful.

The following story was shared by a patient struggling with sleep apnea for many years. This eventually led to the diagnosis of "complex sleep apnea" and treatment by an expert in the disorder. As a physician, I recognize the challenges in this "complex" condition, but was truly moved by her experience. Below is the introduction to her story. Please visit our Research page to learn more about Complex Sleep Apnea by Dr. R Thomas and read her accompanying article.

A Patient's Story (introduction)

You know the quips people make about having "Old Timer's Disease" when they can't remember words or where they put something? Some of the people telling those jokes, and having those problems, aren't anywhere near old.

How many of us have experienced the deep frustration of awful sleep - and the cognitive problems that often come with it?

If you have a sleep disorder badly enough, long enough, and it goes undiagnosed, untreated, and unimproved, you can slowly be losing brain cells and all the functions that go with them.

And how many of us have been doing our level best to use that mask and that machine, and still find it off our face in the morning, or have whipped it off (or across the room!) in the middle of the night? Or just flat out now refuse to use it for any one of a number of reasons?

If this sounds familiar, I encourage you to take the time now to go read the article written by Dr. Robert Thomas, the physician who developed a new treatment for complex sleep apnea and offered it to me. Maybe it will help you, too.

Along with his is a short piece I wrote about my experience. No other sleep specialist has been able to get me this well, and give me back so much of my brain – it may not all come back, but I no longer feel I am standing in dementia’s doorway.

It’s about time.

See the research article by Dr. Anne Sanders, with a commentary by PEP member David Keepnews, which discusses the higher rate of peridontal disease among people with sleep apnea. Is this due to mouth dryness or mouth, more inflammation or other effects of sleep apnea. How can dentists be alerted to this link and help identify patients at risk for sleep apnea? See the Research tab on our portal for more.

Did you ever wonder if sleep apnea or snoring affects your hearing? Dr. Chopra and PEP member Mark Hanson teamed up to discuss recent research from the Hispanic Community Health Study on this topic. Let us know what you think of the question, study results, and how we can better understand the link between hearing loss and sleep apnea.

Thanks Matt, for your many insights and good work that benefits so many!

Regarding oral devices--please check out the forum where there is some good discussion on oral devices for sleep apnea. They vary in effectiveness, but some have been found to be quite effective, and for the right patient, can be a good choice. Regarding software-many of our members really like SleepyHead Software--also discussed in the forum.