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SusanR

SusanR
Joined Oct 2014
SusanR
Joined Oct 2014

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 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.