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One person’s journey - cpap FAIL (s

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Posted by sun dog on June 27, 2011 at 10:25:25:

I’m writing this primarily in the hope that it may help others. We currently don’t have reliable information about how many people experience problems of the sort I have in trying to use cpap, much less an understanding of causes and effective responses.

Therefore, telling this story is important. I’m going to post it in relevant places. Our society tends to marginalize the minority report, and our medical establishment is sometimes even more invalidating, to a sometimes harmful and certainly unethical degree. I’m going to post it in relevant places and hope it will be helpful in ways that I don’t even anticipate.

Anyway, here goes…

About me
• I’m a woman in my 40s and healthy, though about 40 pounds overweight. I do not have problems with nasal congestion or my sinuses. I’m an active person, very intelligent, have some sensitivities of a sensory nature, and when stressed can tend towards anxious.
• It was somewhat of a fluke that got me the diagnosis in the first place; in retrospect, there are only two “symptoms” I can tentatively connect to OSA: 1) generalized pain—I experience aches and soreness a little too frequently and strongly for what I would expect from activity/exertion, 2) I’m a light sleeper and a somewhat restless one.
• I rate myself as negative for daytime sleepiness, naps, headaches, nocturia, concentration or memory issues, feeling tired or fatigued during the day. Epworth scale=2.

Sleep study #1 and results
• My first sleep study (over 2 years ago) showed hypopneas only, but with an AHI of 60 or 70-something. Minimal oxygen desats. They could not get a titration that night so I took home a prescription for an APAP.
• From the very first night, I found the mask (nasal pillows) comfortable enough to wear all night long. Experimentation showed I slept better with constant pressure, and I found settings that allowed me to achieve really good numbers for hours of use per night, leak rate, and AHI. This remained true for all my cpap use.
• Over the next 3+ months, however, my daytime functioning and sense of wellbeing deteriorated to the extent that my quality of life was suffering too much to tolerate any longer. I discontinued use of cpap while I considered my dr’s recommendation for another sleep study.

Sleep Study #2 and results
• I eventually did undertake a second sleep study. The main findings were: the pressure I had already figured out was confirmed, no other comorbidities (such as restless leg syndrome) were found, and alpha intrusions were noted.
• Again, I used cpap and met or exceeded all measurements tracked. Again, I started to experience noticeably and measurable steady deterioration over time, as evidenced by increases in: daytime sleepiness, headaches, irritability, difficulty with concentration and memory, lightheadedness, physical agitation, and periods of extreme lethargy/fatigue.
• My dr requested I wear an actiwatch to track my activity levels and provide a double-check on my quality/quantity of sleep reports. There were no signs of concern or perceived need for psychological intervention.
• The breaking point came when I double-charged one client and made a couple of scheduling errors with other clients. Becoming incompetent at work is not an acceptable outcome. I stopped using the cpap after about 3 months.
• My doctor had no further ideas or suggestions at my final appointment. I was told I could play around with my settings, just continue to use the machine anyway, quit using cpap, explore other treatments, or seek out another sleep dr.

Conclusion (so far) & Misc Details
• Based on discussion with my dr and my own research, my OSA is more of a UARS-kind.
• In my perception, there were only two areas where cpap may have been at least a possible or partial positive experience: it seemed to help somewhat with my mild-moderate pain levels, and it was actually rather soothing to fall asleep with.
• I believe I had a competent sleep dr. I think I was probably titrated correctly. It seems that there were/are no confounding factors that can be easily and/or currently identified and effectively responded to.
• I estimate that I slept about the same amount each night, whether or not I’m using cpap. I do wake up on average more often when using cpap, but almost all of the time am able to fall back asleep quickly and easily.
• I have experienced some intermittent, mild/moderate sleep maintenance insomnia both during period of cpap use and not use. My sleep hygiene and response to insomnia is pretty darn good.
• My primary focus is how I feel and function during the day. I tracked a bunch of things for my dr, but measures such as total sleep time, number and durations of wake-ups, and so on are of interest to me only to the extent they can shed light on how I can use cpap without negative impact on daytime functioning.

I’m not without hope; I take comfort from several facts. Untreated OSA is not quite the sentence of automatic disability-and-death-soon that some paint. I’ve read a bunch of the studies and considered potential flaws and unaccounted for relevant factors in their protocols. I am not saying that OSA does not present a danger. If you find my message too nuanced, please do click away to something else.

Further, I may find someone who has successfully faced this hurdle and shares their story with me. I may find a doctor – on my own or through a referral – who has successfully helped a patient deal with a similar circumstance. And, while I would not consider surgery or an OSA dental appliance, I would consider consulting with an orthodontist with the experience to evaluate me for the use of braces to create a larger mouth, aka palatal, or maxillary, expansion. (However, I don’t know if the hypopneas are caused by my tongue or throat tissues, and I don’t know if that even matters.)

I’m interested to read any thoughts and/or suggestions intended to be helpful or encouraging. I’ll return here periodically to check for responses.

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PLEASE ONLY CLICK THE SUBMIT FOLLOW UP BUTTON ONCE!!. Thanks, Sandman

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