Problem with mask and EPR

[jomama]

Well, I don't know much about PTSD, but appreciate it can be a huge factor in your life, sleep and well-being.  I think CPAP has helped with one aspect of your sleep disorder by removing obstruction and respiratory arousal from the equation.  As far as I know, this is the first time you have raised psychological disruption as an additional factor in how effective your sleep is.  Needless to say, CPAP can't fix that.  So do we toss out CPAP therapy because a secondary problem also prevents satisfying sleep?  

Unfortunately, we can't pin all our sleep problems on CPAP, and in my experience the solution is additive, not subtractive.  You have resolved your CPAP demons, and the scarier ones await your attention. If those are resolved, there may be others, but they are all steps towards a goal.  It's not my nature to preach, because I'd rather share a beer, but I think you know what you need to do.  You're halfway there, and the other part of the journey requires a different tool.  Don't throw out this accomplishment.

I appreciate the kind and supportive words. Thank you. Just to be clear, though, I don't know if I have PTSD, or if trauma has anything to do with how I sleep. It might, it might not. That's not really a subject for this forum, but suffice it to say that I have done many things on that road. 

Re: PAP, I see what you're saying, but the thing is, with me, I'm not sure I even really have sleep apnea to begin with, at least not enough to treat, or to explain my sleep issues. That's what I'm trying to figure out. My home sleep test was very low AHI, and in my opinion, slightly inconclusive (as I'd feel about a PSG that revealed mild apnea), and the charts from mild PAP therapy (pressure 7) also apparently doesn't show a problem. It's possibly false logic, I think, for us to assume that my charts look like this because the CPAP machine is squelching apneas that wouldn't necessarily be there without it.

I am trying PAP or the same reasons I am trying 3 months without alcohol: it's a large, sweeping solution, overkill, in a way, that either brings better sleep or not. In the end, it's as simple as that: does it help me sleep better, or not? If it's not helping me sleep any better, and it's not necessarily treating anything (since I don't have dangerous apnea, which would certainly benefit from successful PAP therapy), then why continue subjecting myself to it? Do you see my logic? 

The question to me is: how long do I subject myself to PAP therapy before I accept that it's not going to help me sleep any better? Again, some people here need PAP therapy because their apnea is dangerous to their health. I have no solid reason to think that's the case with me. So, then, if it's not helping me sleep better, why keep doing it?

My feeling is that if you guys don't see any red flags on my charts, and don't think that my FL are necessarily a cause for concern, then I think it's reasonable to do a trial of CPAP for, say, a few more weeks, and if it isn't helping me sleep better, then I stop, and see if that affects my sleep. If I sleep worse after stopping PAP, then that would show that it was helping something, and there'd be a reason to keep doing PAP, but if I sleep exactly the same (which is what I am expecting), then logic seems to dictate that there's no reason to keep doing it? Doesn't that seem like a reasonable approach?

[Sleeprider]

It seems with very mild sleep disordered breathing, your decision either way does not jeopardize your health. For me it's clearly not an option. Normal breathing, with or without CPAP is not always pretty, perfect respiratory waves, and I'd actually consider that to be rare or unusual. During the time you have been using CPAP and posting this thread, you have barely moved the needle on efficacy, and I think your focus, and that of the forum, has been on comfort. Your results have always been pretty good. Whether you continue CPAP or not appears to be a comfort decision as well. I hope you can resolve the other anxiety issues that interfere with your sense of well-being, but don't let flow limitation be one of those sources of anxiety. If you feel equally good on, or off CPAP, than the choice is yours. A break after using the therapy may help you decide what works best. At least you have a baseline to compare to. Best of luck whatever you decide. I hope you'll check back and let us know what works for you.

[jomama]

It seems with very mild sleep disordered breathing, your decision either way does not jeopardize your health.  For me it's clearly not an option. Normal breathing, with or without CPAP is not always pretty, perfect respiratory waves, and I'd actually consider that to be rare or unusual.  During the time you have been using CPAP and posting this thread, you have barely moved the needle on efficacy, and I think your focus, and that of the forum, has been on comfort. Your results have always been pretty good.  Whether you continue CPAP or not appears to be a comfort decision as well.  I hope you can resolve the other anxiety issues that interfere with your sense of well-being, but don't let flow limitation be one of those sources of anxiety.  If you feel equally good on, or off CPAP, than the choice is yours.  A break after using the therapy may help you decide what works best.  At least you have a baseline to compare to.  Best of luck whatever you decide.  I hope you'll check back and let us know what works for you.

Seems like we're seeing eye to eye on this, which helps a lot, so, thank you. It actually has been a huge relief to find out that you guys don't think that I'm one of those people who should seriously consider moving up to bilevel. That's a load off my chest for sure. Clearly, I was worrying too much about my FL, thinking that they were worse than they actually seem to be! It was really helpful for you and sheepless to point out that they're not necessarily cause for concern in my case. I can't express how grateful I am for that.

Yes, I think you're right that now it's a matter of comfort. The crappy thing is that now that I am fairly comfortable with masks and tubes, and humidity and all that stuff, the noise the machine makes when using EPR is becoming an insurmountable obstacle, which makes falling asleep harder because the sound is distracting, and virtually impossible after I wake up at around 3am with mild insomnia (which I wasn't experiencing regularly without PAP, but that's another issue). So, I still need to solve this problem, and if I can't, it might ground me and make all the rest moot, which is rather frustrating. But I'll discuss the details in a separate reply, since it's kind of off topic to what we've been discussing.

I will say, though, that since the noise doesn't seem to happen when EPR is off, I may experiment again with, say, pressure 7, no EPR, though when I did that months ago, my FL were worse, implying that EPR does indeed help with my FL (whether or not they are actually causing sleep disturbances, which is still up in the air at this point). I may post further charts for your (and others') opinions. Stay tuned.

So, yes, please do keep an eye out for further questions. I deeply appreciate all the help I can get as I continue with my PAP experiment....

[jomama]

That’s not the sound I’m referring to. It’s a high pitched whine but it doesn’t travel through to the mask. I’m not sure what your sound is if it’s traveling to the mask. The only other noise I’ve heard from my machine is when the gasket for the humidifier got out of alignment and there was a loud squeak coming from it.

Hmm, yeah, it's tricky. We might be talking about the same noise, since I would describe it as a low level high pitched whine, that kind of wavers a little bit, meaning the pitch and intensity are not entirely consistent. As you spoke to, it does seem to change on inhale and exhale, and get loudest after exhale before the next inhale. 

Okay, so after last night, I realized that you might be right, that we're talking about different sounds. I'd describe my sound as a lower pitched motorized whine, not high pitched like yours. Mine sounds kind of like when you walk by a tree with lots of bees in it, kind of a mix between that kind of buzzing and a whine. Very low level. Too low to pick up with a mic (but I'm going to try again tonight, I think), but very present, especially at night when things are quiet. Also, I am not so sure that the sound is actually traveling up the tube to the mask, like I thought might be happening. It's hard to tell, since these kind of motor whines are vibrational as well, and the way sound travels is often mysterious (to us non-engineers). Regardless, it's a sound that is definitely coming from the machine itself, and seems to happen only when EPR is on (I need to test more on this, but I think that's the case). 

Unfortunately, I cannot seem to mask/block it in a way that itself is not disturbing. I use earplugs (which totally takes care of the darth vader breathing noises), but they don't block this sound. I have a great white noise machine with various sounds, and last night I found a fan noise that was similar in pitch. That helped mask it a bit, but, again, the problem with that solution is that the volume at which the noise machine needs to be in order to mask the whine is so loud that it, itself, makes it hard for me to relax and fall asleep. The solution being as bad as the problem, in other words.

I bought this machine a year ago from Supplier #2, and it was actually a new replacement they gave me because the first used one they sent me had a strong perfume smell that wouldn't go away, and they were really generous to give me this new unit. I feel awkward asking their help, since they were already so generous, but I may send an email to ask if they might know about the problem and if maybe it's a part I could replace myself. But that seems very unlikely. More likely is that it's a defect that would normally be solved by an exchange, but since this one was already an exchange, I can't ask them for another one at this point, just doesn't seem right (ethically). And they might consider it to be negligible. In your case, for example, I don't think the sound you hear is necessarily normal, but you're living with it. So, it's looking like there's no winning on this one. So frustrating, to have come so far, solved all kinds of issues, and to be grounded by this one thing. 

As to the mask and ballooning, the original point of this thread, I can at least report that the ballooning isn't an issue with the F&P Eson nasal mask. Last night I used that mask with EPR 3, and it was smooth sailing, breathing-wise. As for dry mouth, I've actually, and somewhat surprisingly, been having success with mouth taping (which was problematic when I tried it a few months ago). I think the knowledge that it's keeping me from having dry mouth is helping me accept and appreciate it, and I just tell myself that it's comforting, and that's been working. But, again, it's all for naught if this stupid noise keeps me from being able to fall asleep. Ugh!

[jomama]

Could I get some help interpreting these charts from last night? I decided to try 9-11, EPR 3. On the whole, FL were down, but it was another brutal night of hardly any actual sleep. 

It looks like I'm getting okay sleep for a few minutes before 12:30, but then I dip into FL and have an arousal, and from then on, it looks like I'm basically struggling to fall asleep for the rest of the night. For example, after 4am, I know that I was awake almost the entire time, maybe dozing for a few minutes, but mainly awake. And that's also what almost the whole night is like. I'm wondering if those nice rounded breaths indicate deep sleep. If so, I only get very little deep sleep for a short period. Some of the other breathing might be lighter sleep, but looking at this chart, it's no surprise I'm exhausted all the time. I never get good sleep. Ever.

I think all of the CAs are false/when I was awaken trying to relax and fall asleep again. And I think the OA might be false, too. In other words, I think my true AHI might be closer to 0. I am honestly not sure, looking at these charts (and all my others) whether SDB is actually causing my to be awake so much. The night before, BTW, I did pressure 9 EPR 3, and it looked similar to these charts, even with the rounded breaths for a short time at beginning of night, and then, mess. Here's a couple images from that night:

https://imgur.com/a/lqb70Rh

And there are some strange breathing patterns from both nights (see link below). There was a long period where I had FL looking breathing. But not all night. Again, I was awake much of the time, it looks like, even if I don't remember all of it. Raising from 7 a few nights ago up to about 10 much of last night did not seem to affect those FL breaths. Maybe a little, but not a lot. And it didn't help me sleep any better, that's for sure. 

Can I please get some interpretations of these, and thoughts on what I might do moving forward?

https://imgur.com/a/QK7jKEH

[jomama]

Here are images of the first arousals from those nights (I should have included these in the above post, but am freaking exhausted, as always, so please forgive me...)

https://imgur.com/a/9cvxVtN

I know that the only possible remedy is "raise pressure," but given my experiences thus far, I honestly don't know if that would make a difference. I mean, how high do I go? I'm also guessing that this is where bilevel might be discussed, but I also am skeptical of that making a difference. I'm at a loss.

[jomama]

Anyone? I could really use some help as to how to move forward.

Every night that I use PAP, I wake up in the middle of the night, and have an extremely hard time falling back asleep. This is not something that happens with me when not using PAP. It's no exaggeration to say that it's giving me "sleep maintenance" insomnia, which is wearing me down even more. I can't afford to keep hurting my sleep even worse than normal if there's no hope of it ever making a positive difference. So, I'd really appreciate some help interpreting the above charts, and maybe some thoughts of what you would do if you were in my situation...?

[sheepless]

while you're waiting for a knowledgeable member to respond, it looks to me like your flow limited breathing becomes increasingly limited (diminishing minute vent. I think) until big recovery inhales. I'm not sure cpap, apap, bilevel will help with that as much as asv. are these arousals what wakes you fully to the point of not easily going back to sleep?

[Sleeprider]

I said before you don't need bilevel therapy, but if you want to improve on these flow limits and arousals you may need to. The only alternative I can think of is to verify that the increasing flow limitation is not related to sleep position (chin-tuck).  This is a pretty classic setup for arousal (rera).  You have very low flow limitation statistics, and the transition from normal breathing to flow limitation is fairly rapid which is why I want to eliminate chin tucking as a root cause.  (including monthly calendar in charts...tsk tsk).

[jomama]

Thanks for the replies. :)

Sheepless, I don't think that I woke up fully from that arousal, actually. The main arousals that wake me up enough that I can't sleep have been happening around 3 or 4am, which doesn't happen normally when not doing PAP therapy. PAP therapy is, quite literally, giving me insomnia that I don't have without it.

Sleeprider, sorry for including the calendar. I was thoroughly exhausted when I made those posts, and it took all I had just to do the charts at all. I'll try not to do it in the future, but there is no info lost with them there, as far as I can tell? As to chin tucking, I did get two collars, but they make sleeping very difficult. I see what you're saying about possible chin tuck, because it's unclear what, exactly, is happening there, but given my pillow and head position, it's extremely unlikely that I'm tucking my chin. It just isn't something I do. Mouth may open a very slight amount (when not taping), but not at all like a chin tuck.

I have to wonder, and it might sound ridiculous, but is it possible that it's not a physical obstruction? I ask because I see FL breathing when I know I was awake, and certainly don't feel obstructed at such times. In fact, sometimes I feel a slight "bump" in my breathing on a normal breath, like those breaths that flatten, but with a little dip in the middle. I have good lungs, as far as I know, and think it's just part of my breathing sometimes. I have seen, even at higher pressures of above 10 my breathing get shallower and shallower, leading to an arousal, and I'm honestly not sure if they are from an obstruction. Indeed, in the chart you can see the machine going up to over 10, and it doesn't affect the breathing at all.

I know that a next step might be to try bilevel or ASV, but that's not very realistic for me, given that I'm paying for all of this myself out of pocket, and I can't afford to spend $800 to simply see if bilevel makes a difference, or even more for ASV. It's really hard to push myself to spend money that way, especially given how frugal I need to be.

The thing I keep thinking about is that many people who sleep "normally" might experience something like what's seen in those images you pasted (even normal sleepers sometimes have hypopneas, or even an apnea or two), and they have the mini-arousal I had, and like me, they just don't even remember it, and they sleep on, like I apparently did, just not deeply again. And even though I know I was awake for a good part of the night, I think I may have slept more than I think I did, again, just not deep sleep. In other words, I keep wondering if those overall charts are really so dissimilar to "normal" sleep? Do you really see evidence that my sleep is truly being disturbed by FL or SDB events, or are we just so used to assuming such things here that we're like the hammer that sees everything as a nail? I'm not saying you're necessarily doing that, I'm wondering if I am, simply because I can't find a good explanation for my restless sleep. But so many things can cause restless sleep, many of which I don't think we even understand or have identified. I certainly see many others in a similar situation to mine. It's a pickle, indeed....