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One person’s journey - cpap FAIL (so far) [long post]
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.
Views: 149
Replies to This Discussion
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Permalink Reply by RockRpsgt on
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Do you have arthritis or fibromyalgia? Your symptoms of daytime pain along with alpha intrusion seen in your study suggest that you may have a problem with one or the other. Pain is not typically a symtom of OSA.
One way to find out the source of your apnea would be to test a dental appliance. The majority of these devices do along the same thing that surgery would. I would suggest this route prior to surgery.
"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."
Could you please post these studies and list your own findings.
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Permalink Reply by Charles McDermott on
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You mentioned twice " my daytime functioning and sense of wellbeing deteriorated". Deterioted from what? Did you feel good after starting CPAP?
Are you under stress at work?
You said "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." In sleep study 2 you said "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" That is confusing.
Taking certain medications can effect your health, indulging in alcohol, too many carbonated beverages especially diet ones can effect you as well as diet laced with processed foods.
A healthy lifestyle with eating right, some exercise etc are all keys to feeling good. But, there is no magic bullet that solves all.
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Permalink Reply by Kath Hope www.hope2Sleep.co.uk on
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Charles, what's this about carbonated beverages affecting our sleep? I didn't know that! I eat a healthy diet, no alcohol close to bedtime, but do have fizzy diet drinks (not coca cola) on an evening to quench my thirst.
- "Taking certain medications can effect your health, indulging in alcohol, too many carbonated beverages especially diet ones can effect you as well as diet laced with processed foods."
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Permalink Reply by hifay on
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Have you had blood work done? (for thyroid, iron)
Do you feel better if you do not use the APAP?
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Diet drinks that contain aspartame, splenda etc as a sweetner are not good for you. These are chemical sweetners and the chemicals are what affect our bodies. Also the carbonation in the drink can be affecting you as well. Try an 80 oz. blended fruit drink like apple, grape or banana made with some water. 8:00 PM is the cutoff for eating.
Kath Hope www.hope2Sleep.co.uk said:
Charles, what's this about carbonated beverages affecting our sleep? I didn't know that! I eat a healthy diet, no alcohol close to bedtime, but do have fizzy diet drinks (not coca cola) on an evening to quench my thirst.
- "Taking certain medications can effect your health, indulging in alcohol, too many carbonated beverages especially diet ones can effect you as well as diet laced with processed foods."
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Permalink Reply by Mary Z on
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The cut off for eating is going to depend on your bedtime. I go to bed early and 8:00PM is way too late to stop eating. A better way to make this suggestion, which is a good one, is to say how many hours before bedtime. I don't recall brook mentioning a bed time. Thanks, Charles.
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Whoops! Reckon that means the Hermesetas sweeteners in my coffee will have to go too :(
Charles McDermott said:
Diet drinks that contain aspartame, splenda etc as a sweetner are not good for you. These are chemical sweetners and the chemicals are what affect our bodies. Also the carbonation in the drink can be affecting you as well. Try an 80 oz. blended fruit drink like apple, grape or banana made with some water. 8:00 PM is the cutoff for eating.
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I think all of this things used in moderate or minimal amounts (artificial sweetners and carbonated beverages) will not have negative effects on the health of most of us. I don't mean to discount the theory- there are certainly people for whom even minimal amounts of these additives and carbonated beverages are harmful and it's good that you pointed this out, Charles. It's something that a lot of people would fail to consider.
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Good advice Mary, and very welcome. Soon every pleasure I have will be taken away from me if I carry on like this :( I shall certainly cut down though on these artificial sweeteners, and I don't overdo the carbonated beverages. I found another drink I like today - green tea with blueberries and raspberries, and it didn't need sweetening so I'll alternate that with my coffee.
Love the little dog Mary on your new profile pic :)
Mary Z said:I think all of this things used in moderate or minimal amounts (artificial sweetners and carbonated beverages) will not have negative effects on the health of most of us. I don't mean to discount the theory- there are certainly people for whom even minimal amounts of these additives and carbonated beverages are harmful and it's good that you pointed this out, Charles. It's something that a lot of people would fail to consider.
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Thanks, everyone for your interest, good wishes, and brainstorming; it’s much appreciated.
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Rock,
I don’t think I have either condition, based both on what I know about them and my dr not thinking they are factors (and she’s pretty sharp). I wonder if I might have borderline fibro, if that’s possible. Last time I was tested (over a year ago) I had high levels of c-reactive protein, so some kind of inflammation is going on.
I’m not too keen on trying the dental appliances and opening the door to jaw problems. And surgery is completely off the table.
Actually, no, I can’t post the studies and a list of my own findings. I stopped writing papers for other people when I finished grad school. I’ve done the reading and consideration for my own benefit. Though all the studies I’ve read are ones available online. The critical thinking skills I used to evaluate the methods and findings, I learned in an excellent course I took on research methods.
I can elaborate on my point, which is that while OSA is worse than a hangnail and less serious than pancreatic cancer, it does not warrant, IMO, the fervent zealousness that some people/boards evince (though to be fair, I haven’t seen as much of that here).
If pap therapy works for someone, more power and so on, but it is nowhere near a solution for everyone. I don’t like that my response to it is so anomalous, but there comes a time when the time, expense, and energy shows such diminishing returns it’s not worth it to continue. I remain open to the possibility of new avenues to explore, and at the same time must determine where to put my resources. I think that’s the best any of us can do with our time here.
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Charles,
Deteriorated from my level of functioning when not using cpap.
Let me say it another way. I have none of the common symptoms of OSA when NOT using cpap. I experienced many negative results WITH cpap use. Does that clarify?
I am not taking medications or supplements which have been shown to affect sleep, plus anything I do take is in the morning. Alcohol use is 1-3 glasses of wine no more than 3-4 time per MONTH, and never past dinner time at the latest—which is at least 2-3 hours before going to bed. I do not drink carbonated beverages; neither do I eat sugar or processed foods.
The situation is not one of looking for a silver bullet, but more aptly characterized as requiring a reasonable trade-off between negative side effects and experienced benefit. Not being able to function competently at my job, as described previously, constitutes unacceptable side effects for me.
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hifay,
My thyroid tests normal.
I started using apap, to titrate my pressure. I found my sleep was more restful on cpap. But it was still disrupted by more awakenings, compared to not using cpap.
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