AHI still too high

Hello and thanks for being here. I'm on day 7 with APAP. I was tired all the time, and now I'm tired all the time, but hopeful. I started with a large ff mask, but the leaking was bad. My RT included a medium to try, so I did, and it's less comfortable, but the leaking seems to be solved (partially thanks to trimming my beard). Also, I've had less nausea with the medium size. However, my AHI is still too high, and I still wake up feeling lousy. Part of the trouble is a mournful whistle that develops at higher pressures. I can't seem to make it happen, but after hours of sleep it wakes me up and keeps me there until I mess with it, then the cycle continues.

It seems like I should turn the pressure up, but this is an APAP, so it's supposed to do it on its own, right? I called the RT, and she said this is normal, and the machine takes time to adjust to me. She also said the doc would adjust it at my follow up in January (which feels like a long, long time from now). She did order a mask with memory foam to try to solve the whistle.

Here are the screens for the last two days. There's a gap around 8 am when I get up to send my youngest off to school. Any suggestions would be most welcome.

http://www.happen.net/img/wed11-29.jpg
http://www.happen.net/img/tue11-28.jpg

NightWatch23 wrote:Hello and thanks for being here. I'm on day 7 with APAP. I was tired all the time, and now I'm tired all the time, but hopeful. I started with a large ff mask, but the leaking was bad. My RT included a medium to try, so I did, and it's less comfortable, but the leaking seems to be solved (partially thanks to trimming my beard). Also, I've had less nausea with the medium size. However, my AHI is still too high, and I still wake up feeling lousy. Part of the trouble is a mournful whistle that develops at higher pressures. I can't seem to make it happen, but after hours of sleep it wakes me up and keeps me there until I mess with it, then the cycle continues.

It seems like I should turn the pressure up, but this is an APAP, so it's supposed to do it on its own, right? I called the RT, and she said this is normal, and the machine takes time to adjust to me. She also said the doc would adjust it at my follow up in January (which feels like a long, long time from now). She did order a mask with memory foam to try to solve the whistle.

Here are the screens for the last two days. There's a gap around 8 am when I get up to send my youngest off to school. Any suggestions would be most welcome.

WRONG! Your RT is an idiot. The machine may need time to adjust, but it doesn't "know" what it did the previous nights and every night is "new" to it. It doesn't learn from previous nights.
You need the minimum pressure to be high enough to prevent the majority of events from occurring.

Sounds like you need to take control of your own therapy and make adjustments for yourself. On the positive part, you're using Sleepyhead to see what's going on during the night.

I would increase the minimum to either 9 or 10 for a few nights and see what the reports look like.


Den

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I would at least try a 7 minimum up from the 5 minimum...might be a bit easier to go up in smaller increments instead of doubling your starting pressure minimum.
Often when the minimum is set more optimally the machine will settle down and not go quite so high quite so often.
I wouldn't wait until Jan to have the doctor do it. Call him and get him to do something sooner if you aren't comfortable changing the minimum pressure yourself.

Don't know how to change the pressure...explain here...just find your machine and request the clinical manual.
http://www.apneaboard.com/adjust-cpap-p ... tup-manual

Thanks a ton. I'll give it a try and report back in a day or two.

I'm reporting back with my results, hoping that it will help someone someday.
Wednesday night, after getting advice to try raising my min. pressure to 9 or perhaps 7, I timidly raised it to 6. I woke up after 2-2/3 hours feeling pretty good (relative to my normal waking). I checked my AHI, and it was still high, but better. I had a snack, sent my youngest off to school, and went back to sleep. But first, I figured if 6 helped, I should try 7, so I did, but it didn't help. looking back in Sleepytime, I can see that I tend to have rising AHI, so in 2-2/3 hours it just hadn't had time to get as bad. My overall AHI for the night was 13.43. I'd had worse nights, but this is higher than my sleep test.

Frustrated, I set it to 9 for Thursday night. Take that, apnea! Alas, the longest I was able to stay "asleep" was 2.5 hours. Overall, my AHI was just under 5, and never got over 9, so that seems like an improvement, but I also got a visit from the aerophagia monster for my impertinance. This past week has been worse than before I got the machine. The hardest part is trying to be a good parent when every cell in my body screams for more sleep.

Since more minimum pressure has brought on the aerophagia monster..back off 0.5 cm for now and see how you do and watch the AHI and maybe a little later you can increase the pressure a bit more.
Sort of ease into it slowly if needed.

NightWatch23 wrote:The hardest part is trying to be a good parent when every cell in my body screams for more sleep.

You are being a good parent by attending to your health. Give yourself credit! Remember you are in a transition phase and keep focused on your goal of better sleep. Kids are resilient. If you can explain to them in an age-appropriate way what you are doing, why you're doing it, and how you feel about it, you'll be giving them a good example to follow with their own health issues.

I will never forget how terrifying it was to be awakened by my mother's gasping for air in the night, when I was a young child. (Was she dying? Don't leave me alone. Could she ever get her breath back? What can I do for her? Stop scaring me!) Mom never had a diagnosis of apnea--in fact, I don't even know if she discussed her disturbed sleep with a doctor at all--and it's only since my own diagnosis that I now know what the problem was.

Keep up the good work,
Jean

Thanks.
I tried turning it down to 8.5, but still woke feeling ill, so tried 8.0, and that seemed to tame the monster somewhat, but I'm still not sleeping well or enough and my AHI is still too high. It seems like what's happening is that the longer I sleep, the higher my AHI goes, and the pressure from the machine gets higher to address that. For a while, the high pressure and moisture (I had the humidifier on its lowest setting) combined to make a whistling sound that woke me up. So I turned off the humidifier. Last night, no whistling, but air pressure had no where to go, so was pushing the mask off my face, which only partially woke me up. I remember it, but I didn't wake up enough to do anything about it. And today I was too exhausted to do anything beyond take out the trash and take a couple screenshots.

http://www.happen.net/img/12-01-fri.jpg
http://www.happen.net/img/12-02-sat.jpg

I guess I could try tightening the mask? Should I reduce the max pressure? I need to sleep somehow.

My suggestion would be to TRY setting the minimum to 9 and the maximum pressure to the same. That way you have a straight pressure setting.
If you are having a problem with aerophagia, that may help. If you were to do a forum search on it, and read through some of the posts, you would see that there are a multitude of things to try.......one of them is straight pressure (although some do OK with a range).

Doesn't cost anything to try.


Den

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Wulfman... wrote:My suggestion would be to TRY setting the minimum to 9 and the maximum pressure to the same. That way you have a straight pressure setting.
If you are having a problem with aerophagia, that may help. If you were to do a forum search on it, and read through some of the posts, you would see that there are a multitude of things to try.......one of them is straight pressure (although some do OK with a range).

Doesn't cost anything to try.


Den

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I agree. The OP needs more pressure to address the OSA but it is causing discomfort. Set the machine to a low CPAP and then periodically increase pressure to see if sleep improves.

Usually 2 culprits when we see rather drastic pressure change needs....supine sleeping or REM stage sleep.
I am putting my money or yours being related to REM stage sleep since the pressure changes seem to occur late in the night when we typically have more REM sleep.
Google "sleep stages" and look at the normal hypnograms and see how REM stage cycles through the night and compare to your pressure graphs.
See if you see some correlation.

It's quite common for OSA to be made worse in REM or need more pressure (just like for supine sleeping) and it's just something we have to figure out how to deal with it.
Made more of a problem when the more pressure causes the aerophagia monster to come for a visit.

You have to get the sleep first and foremost. The best AHI in the world isn't all that important if you aren't sleeping for whatever reason.

My thoughts at this point...back up and not use such a wide pressure range since that leaves the door wide open for the aerophagia monster.
Work on getting the sleep quality improved first by trying to keep the door closed on the aerophagia monster and then worry about the apnea events that seem to likely be going to happen later in the night (and let's assume they are REM related for the time being).

Try doing the minimum to equal maximum pressure thing at 8 or 9 cm and see how much stuff happens during REM at those pressures...and see if the aerophagia monster still sneaks in at 8 or 9 fixed and if he does then we have a discussion about maybe a bilevel machine.

What about setting up the EPR to help with the aerophagia? Then the minimum pressure can be set at a level that covers most of the OSAs without so much discomfort. But then, I use a straight CPAP with no EPR, so I might have missed something here.

coconur wrote:What about setting up the EPR to help with the aerophagia? Then the minimum pressure can be set at a level that covers most of the OSAs without so much discomfort. But then, I use a straight CPAP with no EPR, so I might have missed something here.

Looks like OP is using Respironics machine and it's exhale relief is called Flex and it looks like he is already using it....that's how come the 2 pressure lines on the pressure graph...and looks like it is set at the max and the most Flex will give a person is a drop of 2 cm.

Now turning off Flex might help improve/reduce the obstructive stuff, maybe a little, in the AHI but is likely to make the aerophagia worse which will for sure make sleep quality worse.

Oh my goodness. I had a decent night. Not great, but so much better. I feel almost human again. Thank you, thank you, thank you.

Part of it is due to getting a new mask. One thing the RT did do was order me an AirTouch. I'm not thrilled about requiring disposable foam, but it's a lot more comfortable, and it seems like it really holds a good seal. I haven't cranked up the pressure yet though. I followed the advice to try getting sleep at any AHI, and I'm so glad I did.

My AHI has been just under 7 for the last two nights, but last night I actually got enough sleep (5 sessions totalling 8 hours, with no large gaps). I woke up feeling tired, and fell asleep for about an hour without the mask. It took a couple hours before I started to notice that something was very different, starting with coherent thoughts and willingness and patience for chores. I even got some exercise.

So my next step, I guess, is to gradually increase the max. pressure? Probably not tonight, but soon. I'm not fixed, but I may see what a second day of I have the Flex up at 3. Monday night was min 7 max 12, and last night was min 6.5 max 11.

Now I just have to avoid stressing out about how far behind I am on my holiday to do list.

NightWatch23 wrote: I had a decent night. . . . I actually got enough sleep

Congratulations! It's great to hear your positive news.

Jean