Sleepy Taz, actually I gave away an Opus 360 that was rough on my nostrils. I had hoped that by taking off a few days I could avoid the hard-to-get-rid-of sores, but apparently even with that, just a few hours on the pillows started another sore going. I'm talking to my ENT about what product to use to help with that. I think pillows are my best crack at comfortable CPAP use and the least leaks, and I have two types of masks that I'll try to work on. I'm not sure if I just need some period of toughening my skin... Does anyone know if my "callous theory" holds any water?
Bright Choice wrote:Do you have a ffm that would work as a backup when nares are sore?
I have FFMs, but was not successful with them--bad facial landscape for FFMs apparently. I have an Activa LT that I'll consider if I can't proceed with pillows.
Would it be true that everyone needs to "conquer" a UARS component even after getting AHI under control?
I don't know, but I don't think so. I think some people are prescribed a pressure that is sufficient to eliminate FLs as well as hypopneas and apneas. But, as I said, I'd be afraid in your case to recommend that you increase the pressure because of your centrals (and my lack of knowledge about them). If you didn't have them, you'd be on course to do what I'm going to be doing, which is to experimentally bump up your pressure to see if eliminating FLs improves your daytime symptoms.
I believe that the above protocol plus not eating anything 3-4 hours before bedtime has helped me tremendously. I never would have thought that nasal breathing or reflux was a problem for me, but now that I have learned more and have done some experimenting I can see that those two components of therapy are more important than I ever understood.
Great! Well, in the interest of science and the greater good, after you've established a consistent baseline for this (say a couple weeks), how about reintroducing each of those elements one at a time to see what impact it has on you? I'm half-joking, as clearly if you're feeling better, you won't care which it is. On the other hand, hypothetically, what if it was just the neti pot that helped and you don't need a PPI?
robysue wrote:I ask this as another person who does NOT desaturate according to my diagnostic test: What exactly is the medical reason for prescribing xPAP to folks who have obstructive apneas and hypopneas but whose apneaic events are NOT associated with oxygen desaturations? Or do the numerous arousals in and by themselves pose a health risk the way the O2 desats do? I ask these questions sincerely: Is there a known valid medical reason? Or is it just CYA? In other words, do the docs just assume that we will eventually start to desaturate someday in the (possibly far) future? Is there any "proof" that we will eventually start to desat? Is there actually a good medical reason for insisting that someone with moderate apnea based on AHI or RDI but with few or no daytime symptoms and NO O2 desats use xPAP---even when the attempt to adjust to xPAP triggers a significant DECREASE in quality of life?
I think I asked this question in YOUR thread! What *I* was told about OSA in the presence of no desaturations and whether I need to be treated is that the known cardiovascular risks are associated with desaturating, we don't know much about the brain, and the rest is quality of life: EDS, depression, anxiety, etc. So I'm on it to improve the quality of my life. I don't know why you're on it. I asked you that and it seemed you had been told differently by your doctor, as well as you felt it was helping your headaches, joint pain, etc. I'd have to reread what it is that your doctor said.
I haven't heard anything to suggest that one necessarily begins to desaturate eventually. I was told thin people tend to desaturate less (obviously I'm sure there are exceptions to this), which is why some doctors take issue with the AASM recommended scoring of hypopneas requiring desaturations, and prefer a more liberal scoring such as associations with arousals, etc.
Please keep in mind that I am NOT looking for an excuse to ditch my BiPAP (yet). And that I have been 100% compliant right from the start. And that slowly my quality of life is getting back to something approaching what it was before I started this adventure. But I can't say "BiPAP is wonderful because it's made a POSITIVE difference in my life!" I'm still at the stage of using it out of fear: Fear that someday (when I'm 60? 70? 80? 90?) I *might* develop a comorbidity of OSA. And I'm longing for a more positive reason to keep using Kaa, my PR System One BiPAP Auto.
And I would never want to be a catalyst in encouraging you not to use your machine. If I were in your situation, I would read everything I could get my hands on and consult other highly reputable doctors about the long-term implications of not treating OSA without desaturations. IF the information were to suggest that there are no health risks for not treating it, then I would do a cost benefit analysis to figure out whether the benefits I'd gained from CPAP outweighed the costs. Personally (and I mean personally), I would be hard pressed to induce in myself the quality of life I have undergone for the past couple of decades without a good reason for doing so. Obviously if there were known risks to me for not treating, that would be another story. I can't help much with this because I haven't researched this topic, as I have the quality of life incentive. That said, because of what I was told, because I don't have that fear of major health risks hanging over my head (or if they are hanging, I haven't heard that they are hanging), so I have the luxury of taking off a few days when my nose is painful and inflamed or I can't stop coughing at night or whatever.
BTW, I have heard of "localized" damage that can occur due to snoring. I can't remember if you snore or not.
How far away are you from Dr. Avram Gold? If I were you, I would consider a consult with him and ask these questions. He mentioned on the teleseminar that he believes in treating FLs even in the absence of arousals, so that's a very conservative position. I just don't know if he does that only in symptomatic patients (e.g., EDS or functional somatic syndromes) or even if a patient was completely asymptomatic (and not sure you qualify) prior to CPAP. He has that limbic system theory about the functional somatic syndromes, so a question for him would be whether he thinks there is a consequence to the brain (about which my doc said we know little) to not treating, even in the absence of symptoms, and how much evidence is there to support that. You could even shoot him an email. He provided his email address on that teleseminar.