Frustrated with recommendations by doctor

[sheepless]

allen, I only have a few months more than you on asv so I'm a neophyte experimenting through trial and error. I have given in to the temptation give advice on occasion but I'm really not experienced enough to be doing so beyond the basics. I can report my experiences though.

it's my understanding raising min ps is the conventional means of dealing with hypopnea (and flow limitations). in my case higher fixed epap gets rid of most flagged events, better than the min/max ranges I've tried. maybe at some point that's something you can try if you haven't already. oddly enough, while I haven't quantified this, my sense is that higher min ps produces more h for me. makes me wonder if those h are central in origin (see 're hypopnea' below). whatever, so far at all settings I still get a lot of ragged breathing when my body is trying to obstruct and the machine is trying to push through it.

aerophagia was too bad after a while at my highest (and best so far) epap of 11 so I'm forced to lower epap and try again to work with higher min ps. at some point raising min ps will give me aerophagia and more leaks as well so I'm starting to think there's a limit to what I should expect from the machine. I still have flagged events that wake me up, usually above 20 and right up to 25. so far I have had little luck in reducing flow limitations, even with min ps up to 6 which is about the limit of my tolerance. I can't know yet (without experimenting) if lowering max ipap will produce too many more events but if not too many, it's not a bad strategy to accept a few more to reduce the negative effects of high pressure.

if ahi was the only measure, I'd be in pretty good shape. I can get 1-ish ahi's pretty regularly but I'm still exhausted with frequent awakenings so I'm still experimenting in the hope of finding a solution to that.

the odd thing is, at least in my experience, there are a variety of settings that can return good results. it's an art I have not mastered to get the best results at the lowest pressures. I've been working up to higher pressures to see where the machine's and my limits are; now I need to reevaluate what I might achieve at lower pressure.

at any rate, I'm back to telling you my experiences. what I really want to say is that there aren't that many people around with asv knowledge and/or experience, but there are a few, sleeprider among the best. my advice is to add my experience to your knowledge base but follow their and his advice first.

re hypopnea: I don't get that many of them so not much experience stopping them. it might be worth noting that h can be obstructive or central; in my last home test mine were said to be obstructive and by implication I assume responsive to higher pressure. I have no idea how to tell the difference and I don't know if the fact that asv resolves ca means asv also resolves central h. probably. if the machine does fix central this is probably n/a but if yours are central I wonder if raising pressure might make them worse - or at least not better. IDK, just thinking 'out loud'.

in my time with this forum I've followed quite a few threads that began with poor results and looked impossible to me to improve but I think every person that stuck with it eventually worked things out with help from here. it might take longer than we'd like, but you'll get there. I know you're determined so try to stay optimistic. at times I'm really bummed I'm not doing better after 2 years but when I think about it I know I'm doing so much better than I was and that keeps me going. knowing we aren't alone helps a great deal too.

I'm following you with interest and hope to learn from your progress.

[allanri]

So if you're game, let's move PS min to 3.4 and PS max to 12 and see if that is more comfortable.

So here's what the night looked like with those settings:
[attachment=8661]
Not terrible, but a smattering of UAs and Hs throughout the night. Lots of flow limitations.

I'm still using ramp, as you see, because I figure it will help me to fall asleep more quickly and easily.  (I don't generally find it easy to 'drift off' ... it can take me an hour sometimes to fall asleep, even without the mask on.)  Although the pressures last night were quite comfortable. I can imagine turning ramp off with the current settings.  Though ... I'm guessing the current settings want tweaking, due to the flow limitations....?

I was up a number of times too ... bathroom breaks, and at one point I ended up switching from a nasal mask to a FFM, because of a bit of rhinitis ... runny/stuffy nose.  I actually find the FFM more comfortable for breathing, even if it is less comfortable to wear. Somehow it doesn't feel as unnatural to breathe, which I find is the case with pillows, or even a nasal mask.

Also, I did take half of an Imovane, just because after a couple of crappy nights, I desperately wanted to sleep.  It would have been a pretty good night if the dog hadn't started barking like crazy at 6:40.  I need to try to get by without the pill, though. I don't take it often. But it's probably not a great idea, even if I can't get to sleep: https://en.wikipedia.org/wiki/Zopiclone#EEG_and_sleep.  Short term gain for longer term pain, perhaps.

[allanri]

allen, I only have a few months more than you on asv so I'm a neophyte experimenting through trial and error.  I have given in to the temptation give advice on occasion but I'm really not experienced enough to be doing so beyond the basics.  I can report my experiences though.    

Thanks for this, sheepless.  It is really very helpful to hear about your experience with this, if for no other reason, because I can see I'm not alone in struggling with this.  I was under the (perhaps naive) impression that the ASV would fix everything, right away.  And certainly, my first few nights were good, at least as far as the numbers go. Even the more recent nights are far better than what I was getting with CPAP, again, from a numbers angle.  But as you say, it's all in the quality of sleep, and how you feel the next day, and unfortunately, that hasn't yet improved significantly.  

In my case, I'm just not sleeping that well while the machine's on.  An AHI of 0 is great, as long as you're actually asleep; that's my problem ... it takes me too long to fall asleep, and I awaken too easily.  The machine has no awareness of that in it's assessment of your sleep.

It's interesting what you say about some H's being a CA that didn't quite happen.  I guess I had thought that an H was more likely to be an OA that got "downgraded" by a blast of pressure. I don't know if I mentioned it on this forum anywhere, but I think I've had some form of CA all my life. I even remember telling my mother when I was a kid that I was sometimes afraid I would stop breathing in bed: I had this sense that I had to "force" myself to take a breath, rather than it happening naturally.  I think she chalked it up to me being a little neurotic, and after a while, that's what I told myself.  After all, I always did wake up the next morning.  But the feeling of not breathing properly while in bed came to the fore again when I started using CPAP, and why it has been particularly difficult. My body seemed to almost fight against CPAP, sort of like a petulant child saying "you're not the boss of me - you can't make me breathe!!".  I'd become conscious of the fact that I wasn't inhaling the way I would if I was mask-less.  Anyway, I do feel like the ASV is helping my breathing rhythm. I feel a teeny sense of relief when I feel the pressure building to make me inhale; it's sort of like "Thank goodness someone's on top of this whole breathing thing!".  

Of course, my sleep doctor dismisses all of this ... I think he thinks - like my mother - I'm just being neurotic.  (Which I'm really not, generally speaking ... I think I'm pretty well adjusted w.r.t. most things.)  It's quite galling ... the guy's a respirologist, yet he has no interest in looking at my breathing issues in any detail whatsoever.  He just looks at the summary data/AHI.  

So, I'm going to keep plugging away, with the help of everyone here.  I think I might also look into some CBT to see if there's some tricks there that might help me nod off more quickly.  I've done everything else I can think of ... no TV/screens, a quiet routine, a glass of warm milk (uck) before bed ... but my mind starts to do a rather energetic set of dance moves as soon as I shut the light out. Hmm ... maybe I am neurotic after all ...  

[Sleeprider]

The biggest change we made was a 3-cm reduction in PS max. Hopefully this was more comfortable. The slight increase in PS min seemed to help, but we won't know for a while if AHI reduction will persist. At least things moved in the right direction. If you want to try PS min at 3.6 you can implement that when you're ready.

[allanri]

It was definitely more comfortable. But I think increasing PS min is probably indicated, as there are still quite a few flow limitations. I don't see any reason to wait to do that ...?

[allanri]

So I didn’t use the machine last night. I’ve had 3 crappy nights in a row, and putting the mask on last night was sufficiently anxiety-inducing (about falling asleep) that just took it off and rolled over. Subsequently, I slept quite deeply, I think, but not long enough, because I had tossed and turned so much when I first got into bed. so I’m still a bit of a wreck.

I realize that in addition to sleep apnea, I’m struggling with insomnia. It takes me AGES to fall asleep (sleep latency), esp. if I’m wearing the mask; sometimes it can be more than an hour before I drift off. Also, as I’ve mentioned before, I wake up several times (sleep maintainace) and have a terrible time getting back to sleep. This was happing before I started CPAP, but in many ways, the discomfort of CPAP has exacerbated it.

I picked up a workbook on CBT approaches to insomnia yesterday; while I have pretty good “sleep hygiene”, there are some things I’m definitely doing wrong.  Like going to bed early to allow “extra time” to fall asleep. Apparently this is very bad; it is supposedly far better to go to bed quite late (e.g. 1:30), when you’re REALLY sleepy, and to do this for several nights, eventually moving your bedtime a little earlier every night until you get to a normal bedtime. The theory is that your mind eventually associates getting into bed with falling asleep, so you eventually are able to do so more quickly.  

There are loads of other techniques I want to try, but the long and the short of it is that last night, I decided to eliminate one thing that stops me from getting to sleep as quickly: the mask. Not sure if this was a good idea or not.

I need to figures this out: it’s sort of a chicken and egg problem. Do I use the mask, which increases the difficulty I have getting to sleep, and risk not addressing my insomnia problem effectively? Or do I abandon the mask until I feel I have dealt with the sleep latency issues a little more, and risk having apneas?

[sheepless]

without stopping to figure out why, I just have an intuitive sense that you can do both at once more efficiently than one at a time. besides, the whole point is to mitigate the consequences of apnea and without the machine we're susceptible once again to all that trauma. I hope you'll keep us apprised of your use of cbt. I'm very interested in better understanding if/how it works for others.

[allanri]

Maybe you’re right, sheepless. I’ll try the mask tonight. I’ll probably use ramp to get started. It’s not as distracting as straight up ASV is, at least for me. I’m not too concerned about hypopneas during ramp. They usually happen while I’m still awake anyway.

The CBT approach is interesting, although it a fair bit of work. You’re supposed to use sleep logs to establish baseline metrics, And then you play what amounts to a bunch of mind games with yourself to try to reset some of the “DIP switches” in your brain that are “set incorrectly”, that prevent you from getting to and staying asleep. Difficulty for me is that I’ve been both too tired and too busy to really get into the book!

[sheepless]

too tired to do the work to feel less tired.  I know.  nasty thing that catch-22.  like I need to get outside more and get more exercise and have more fun bc it's supposed to help me feel better but it's precisely because I feel like crap that it's so hard to do.  same with weight loss.  guess at some point we just have to convince ourselves of the old saw: no pain no gain?

I understand sleep hygiene but not cbt so much.  I know I should at least make an honest effort to try it but it's those mind games you mention that give me trouble.  like, my wife sets clocks ahead so she won't be late.  I can't figure out how that works for her.  I know they aren't reporting the 'real' time so I do the clock math to figure it out (I'm also frequently late!).  I've never bought the fake it til you make it method either, but I'm a cynic.  I'm hoping others, like you please, will test the waters, succeed and then maybe I can talk myself into playing.     sorry, I really am pulling for you and can't wait to read your positive reports!

[Cpapian]

too tired to do the work to feel less tired.  I know.  nasty thing that catch-22.  like I need to get outside more and get more exercise and have more fun bc it's supposed to help me feel better but it's precisely because I feel like crap that it's so hard to do.  same with weight loss.  guess at some point we just have to convince ourselves of the old saw: no pain no gain?

I understand sleep hygiene but not cbt so much.  I know I should at least make an honest effort to try it but it's those mind games you mention that give me trouble.  like, my wife sets clocks ahead so she won't be late.  I can't figure out how that works for her.  I know they aren't reporting the 'real' time so I do the clock math to figure it out (I'm also frequently late!).  I've never bought the fake it til you make it method either, but I'm a cynic.  I'm hoping others, like you please, will test the waters, succeed and then maybe I can talk myself into playing.     sorry, I really am pulling for you and can't wait to read your positive reports!

Another way of looking at those mind games would be to consider that you already have (unconsciously) played mind games that have negatively affected your sleep, so the new mind games (conscious) purpose is to negate the impact of the earlier, destructive ones.