Complex Sleep Apnea: A Patient's Story

One Morning

I can tell you the morning it happened. It was remarkable because I remember only three others like it in my life, and they happened a very long time ago.

Not new to CPAP use and struggling with the hose, mask, wheezing machinery, rainout, red-lined-face and mask-leak-induced dry eyes since 2008, I had received some benefit overall, but not much. The only reason I persisted with the confounded contraption was that anytime I stopped using it in frustration, or ripped it off at night because it just felt awful, it took merely five to seven days for me to see my brain clearly getting dysfunctional again.

Since I had degenerated to what I am convinced was early-stage dementia by the time I finally convinced my primary care physician to order a sleep test, I knew I didn’t want to go back there. As much as I hated the contraption, I knew it was at least slowing the cognitive decline, and I did have some brief stretches of days here and there when I could see some small improvement. However above a certain low level it never was sustainable.

My first polysomnogram (PSG) back in 2008 was a two-night study, wherein the first night only looked at what my sleep "normally" looked like, with no CPAP use at all. I had mostly central apneas even then, with terrible sleep fragmentation, and only some obstructions. Yet I was diagnosed with moderate obstructive sleep apnea and put on CPAP. Eventually we tried an APAP, which didn’t help, and seemed to breathe against me.

Then in 2015 I was put on a bi-level PAP, ostensibly to treat what the specialist said was central sleep apnea. He said that, since my AHI numbers had drifted down to 5, and 5 was "considered normal by the American Academy of Sleep Medicine," really I was just not giving the treatment long enough.

How much time is enough?

How can an AHI of 5 possibly be "normal," given my continuing dysfunction?

Then sometime in November 2015, one of the MyApnea.Org researchers with whom I had been corresponding recommended that I consider a second opinion from yet another researcher-clinician. I was offered an introduction to Dr. Robert Thomas, who asked some questions, took a look at my data card, and willingly sent me research papers describing his approach to what he saw going on during my sleep.

I read the papers. That meant looking up a lot of concepts in online medical dictionaries, and the researcher was willing to answer my questions. Then a meeting followed, and a PSG in his lab, and then return home with instructions for continuing the treatment, instructions I followed meticulously.

Fast-forward to this particular morning, nine days later.

I woke up or my alarm went off, I don’t recall which. Per the doctor’s stern instructions that I not continue to try to chase sleep but instead get up at the same time every day, I swung my legs out of bed and onto the floor, but stopped short of standing up, because something was definitely very different. It was weird, it was so different. Since other health issues abound, I really needed to know what it was.

It took me literally about three full seconds attempting to understand what I was perceiving before I realized that...

I felt rested.

I felt like I had actually had a good night’s sleep.

I felt like I imagined my friends all had, when they crowed to me about how fabulous their own PAP treatment was the first night they used it - refreshed!

Behold the magic of good sleep! I won’t tell you I danced for joy, but I might have...

And what wonderment of a new treatment was I using?

I was breathing a carefully-determined volume of my own carbon dioxide mixed with the fresh air delivered by the straight CPAP the doctor had put me on, after taking me off the Bi-Level that appeared to be making my central apneas much worse. The new treatment involved a small, unobtrusive, but powerful change to the mask/hose assembly that turned it into an EERS device, the one Dr. Thomas describes in his article on complex sleep apnea. Managing mask leaks is key.

Now, about 6 weeks later, I have many mornings when I feel almost that good again, and few mornings where getting up is a struggle. On the EERS, my worst nights are only as bad as my good nights were on the Bi-Level - and they are increasingly the exception, not the norm.

I won’t say I'm fine. Not yet. And I won’t say I'm cured, because I don’t think there is a cure. But I will say that with the new treatment, finally, my cognitive improvements are coming in increasingly-longer stretches of days, and the slipping periods are definitely shorter and less severe.

The second feeling I had that morning 9 days after the PSG? Hope. I awaken now, every morning, with a renewed, refreshed sense of hope.

This treatment opportunity came unexpectedly as a result of my involvement with MyApnea.Org and the researchers' commitment to collaborating with and listening to patients that is its hallmark. If this isn't patient-centered, then I don’t know what is.

This article was written by Si Baker-Goodwin, EdD, Former psychologist and current member of the Patient Engagement Panel, to provide a patient's perspective on the disorder discussed by Robert Thomas.

By MyApnea on February 1, 2016 Feb 1, 2016 in Patient Stories
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