New APAP/CPAP user with concerns.

[Shanshsin]

Hello everyone!

I have a couple questions to see if anyone can shed some light via experience or knowledge concerning what I'm seeing with my SleepyHead data.

I've only recently started using PAP therapy (12/28/18). I had my sleep study done the Sunday night before Christmas and they rushed right along to get me hooked up. My initial AHI was ~30, I had a very hard time trying to sleep at the hospital due to several reasons. And barely got back to sleep at all after they woke me and put on a mask thanks to someone watching tv out in the hallway. Fortunately I was able to see the review and sample data before my follow up for the study results as basically my Dr. told me my AHI was 29 and he was giving me a script for a CPAP. He didn't care to discuss the results or have any concerns about the study experience, maybe he's had too many cranky sleep deprived patients?

The therapy plan was to send me home with my machine on auto 4-20 for a couple weeks to see what kind of pressure I'd need. I'm trying to work on my sleep hygiene and foster a better sleeping environment, over all I'm starting to feel better/less headaches and foggyness. The first couple of nights were really rough with a lot of fragmented sleep, reduced my AHI to less than 15. By day(night?) 9 I hit my first below 5, my lowest in the first two weeks was a 2.37. Most days are below 6-7, but now the doc has changed my settings for me. Tonight will be my third night of CPAP mode at 19. I'm not dealing with the constant pressure as well. Quite a bit of aerophagia compared to the auto mode, even worse than the first couple nights of learning to sleep with the mask. I'm getting less sleep and feeling more tired, AHI is still 4-4.5 for the two nights and it doesn't seem worth it so far compared to the auto settings from before but my inexperience tells me I should give it more time.


On to my questions.

I know the time it takes to acclimate to therapy is different for everyone. One aspect I'm wondering about though is if I have a reasonable expectation(hope) of reducing OSA events simply with more time/use given a fair number of them are happening at pressures of 19 or higher? It feels concerning that I still have as many as I do at the higher pressure. While I could stand to lose a little weight and get in better shape before I turn 46, I don't know if that alone would help make a difference for the events I'm having trouble with. I'm considering a didgeridoo to work on circular breathing(just for fun) but my wife might fix all of my problems if I subject her to that.


Given the high pressure persisting OSA events, should I be looking into biPAP? While looking through titration instructions from ResMed/Respironics to determine settings they both suggest going to biPAP with OSA events over a pressure of 15 iirc. I don't have my next follow up with my provider for about a month. Should I consider halting the process of getting the Airsense10 Autoset covered until I know if I should be looking into biPAP? I don't know if the Dr. is really going to be interested in even discussing it, my current impression is that he's about ready to retire and he's most likely to tell me to just crank the pressure to 20 and deal with it as I'm technically 'treated'. I'd probably need to pay a couple months rent for the usage of the machine I have, but that's likely less than the purchase price if insurance would tell me to wait a year before getting another machine.


As it's pretty late here and I should be sleeping already, I'll apologize in advance for mistakes/missing info. I'll toss in my most recent night at 19, I feel like it was a rough night and I'm not sure I'm any better rested for it.

Thanks so much for your time!
J

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PS - I have looked into how to get into clinical settings. I'm currently playing nice while waiting to hit initial compliance for insurance coverage. But this pressure of 19 constant is giving me second thoughts on the waiting, I may call and ask them to flip it back to auto 14-20 as 14 seemed to catch about half my events. The other half seem to be laughing at 20 anyway.

[Pugsy]

Welcome to the forum.

Your current machine is function in a limited bilevel capacity right now with the use of EPR at 3...going to the real bilevel would mean you can have more than 3 difference between inhale and exhale...and of course go to 25 if you need it.
That greater difference could very well be needed at your higher pressures in terms of your comfort.
Right now you are using cpap mode fixed at 19....on inhale you have 19 cm and on exhale you have 16 cm...that's by definition a bilevel situation. The difference is 3 cm...and in bilevel terminology that is referred to as pressure support or PS when we talk about bilevel settings.

Please understand that the term bipap is actually a Respironics trademark name for their bilevel machines...I know it has become sort of used generically but if we are to be 100 % accurate....the term is really bilevel when speaking about the machines in general.
ResMed has machine models that do bilevel (several of them in fact that to various things for various issues) but they don't mention bipap anywhere...that's because ResMed calls their bilevel machines by a different trademark name.

I may call and ask them to flip it back to auto 14-20 as 14 seemed to catch about half my events. The other half seem to be laughing at 20 anyway.

If you can't sleep at 19 cm....doesn't help much does it?

Is your OSA worse in REM by chance?
Did they mention worse on your back vs side by chance?

Those apnea events that laugh at 20 cm...probably because you were either on your back or during REM...maybe a combination of both.

Do you have any reports in APAP mode with the minimum up around 14 or 15? Or are they all with the minimum really low?
If you haven't actually tried it...it would be more comfortable than 19 fixed for sure.....

I do think that you would probably benefit from a real bilevel machine....there are some additional setting tweaks available (beyond just the higher PS) on the real bilevels that you don't have available now...and those tweaks can make the use of those higher pressures MUCH easier to swallow.

[Shanshsin]

Thanks for the welcome.

Please understand that the term bipap is actually a Respironics trademark name for their bilevel machines...I know it has become sort of used generically but if we are to be 100 % accurate....the term is really bilevel when speaking about the machines in general.
ResMed has machine models that do bilevel (several of them in fact that to various things for various issues) but they don't mention bipap anywhere...that's because ResMed calls their bilevel machines by a different trademark name.

I'll work on correcting my terminology. Is there any way to figure out/general "rule of thumb" for when a higher or lower bilevel setting is more appropriate? DME set up the EPR with the maximum difference of 3 cm for comfort along with a ramp starting pressure of 4. After a few nights 4 cm felt kind of low so I now have it starting at 8 cm. But the EPR is still at 3 cm, which seems to reduce the feeling of fighting to exhale except when the pressure is running higher than 16. And sometimes I think it's just I forget to breath, I do notice that while I'm trying to fall asleep. I at least seem to be getting better about not having the pulse of pressure the machine makes in auto mode not annoying my ex/inhale when I'm trying to go to sleep.

Is your OSA worse in REM by chance?
Did they mention worse on your back vs side by chance?

Those apnea events that laugh at 20 cm...probably because you were either on your back or during REM...maybe a combination of both.

Do you have any reports in APAP mode with the minimum up around 14 or 15? Or are they all with the minimum really low?
If you haven't actually tried it...it would be more comfortable than 19 fixed for sure.....

Definitely have worse apnea on my back, but I'm usually a side sleeper. I barely got any REM during my study but I suspect that is when I'm having problems needing more pressure. There usually seems to be a couple times a night, first time seems to run around 30-90 minutes after falling asleep. Then again anywhere from ~2-4 hours later. I'm still waking up on occasion during the night so I'm not very certain when I'm actually getting REM. I forget what it's like.

I have reports from every night, but they all were at a range of 10-20 cm after ramp until they bumped me to 19 cm fixed. I actually called and spoke with a nurse this morning after another less than restful night and requested they put it back on auto with a range of 13-20 cm. While typing up my reply they called me back and said they're going to put it through. At least it will be a little more comfortable except until events happening despite higher pressure anyway. Maybe I'll get used to it running higher with further use.

Do you want any reports from those nights even though they start at 10 cm?


Thanks for the input Pugsy!

[Pugsy]

No...not really any need for those reports starting at 10 unless you had some with 2.0 AHI or less.
I have a pretty good idea what we would see on them and since they have agreed to go back to apap mode and up the minimum...those are going to be more important anyway.

If you google "sleep stages" and look at the normal hypnograms you can get a pretty good idea when REM normally happens.
First REM is probably around 90 minutes after sleep onset (give or take a little bit) and is usually fairly brief and as the night goes on REM will come around sooner and last a little longer with the greatest amount of REM occurring in those wee hours of the morning before we get up. I got pretty good at spotting probable REM in my software reports because REM is where my OSA is worse...and I need sometimes 6 to 8 cm more pressure in REM...so I can usually spot it with the pressure increases.
Sleeping on my back has never been much of a trigger for me but REM sure is.

Is there any way to figure out/general "rule of thumb" for when a higher or lower bilevel setting is more appropriate?

Not really anything set in stone. I depends on how well a person can deal with the pressures in general.
I know people doing 18 cm fixed without any exhale relief and doing quite nicely with it and I know people who have major problems trying to exhale against 10 cm...go figure.
Usually though bilevel is first thought when people need 15 or more....it's simply more comfortable. I can exhale against 18 (tried it once just for grins) but man it is NOT comfortable and takes a lot of work. I sure wouldn't want to do it all the time. Way more work than I want to do.

[Okie bipap]

As a bilevel user with high pressure needs, I have learned that a little more exhale relief makes it easier for me to sleep. My wife and I both use bilevel machines with similar pressure needs and we both use 4 cm pressure support (exhale relief). When I first started, they had my pressure set at 20 to 25 which is the max the machine would go. After a few months, I learned I could get by with a little less pressure, and that is what I use now.

[Shanshsin]

No...not really any need for those reports starting at 10 unless you had some with 2.0 AHI or less.
I have a pretty good idea what we would see on them and since they have agreed to go back to apap mode and up the minimum...those are going to be more important anyway.

If you google "sleep stages" and look at the normal hypnograms you can get a pretty good idea when REM normally happens.

Unfortunately my only sub 3 AHI so far involved a fair amount of leaking(13%, max rate 110 ). I'll do some more studying when I get time to see if I can better read/determine my sleep stages. I'm pretty sure I have not settled into using the machine yet either, still an improvement to no treatment at all!

I also forgot to mention medication usage, but I don't think there's anything there causing issues. Daily I take a cetirizine, low dose of losartan, and I'm about a month in on bupropion xl. Which seemed to really help the passing out at work issue.

Meanwhile I have contacted the DME about verifying where in the process they are for PA approval on my current machine, and to see their input on if they feel a bilevel machine is a better idea(would they really think it was a bad idea given the $$?). I should be able to return this machine before 30 days, but that will be coming up pretty soon. I'm presuming I would need a new RX specifying bilevel machine rather than just APAP. Just playing the phone tag game.

I'll be so glad once I get insurance compliance taken care of and I'll be willing to fine tune my settings without it involving 7 different phone calls between at least 4 people.

After a few months, I learned I could get by with a little less pressure, and that is what I use now.

When you moved to a little less pressure were you seeing a lower AHI then? Or was it more of a quality of sleep vs squishing every OSA event choice? I know everyone is different, I'm just trying to be hopeful that it may even out for me after more use. If I'm running into a need of this much pressure now I'm not sure what the next 30-40 years is going to mean.

Probably be several hours before I check back in again, but thanks so much for your help guys!

[D.H.]

An AHI under 5 is officially acceptable (though I think it's horrible).

One thing that you might try is changing to APAP and setting the max to 20. It's not much higher than you already have. However, if it goes above 19 with any regularity, that will give you hint that you might need more pressure (which means a different machine, but you can worry about that later).

[palerider]

Something to keep in mind, your pressure isn't 19, as far as preventing apneas, it's 16, the pressure when you're not inhaling. that's the pressure that keeps your airway open.

if the lower pressure is too low, then the airway closes, and you can't start to take a breath to trigger the machine to raise to the higher pressure.

I don't know why so many doctors are stupid and want to put people on CPAP. It doesn't work better for most people.

You'd do better on auto with a max of 20, but the ability to go lower when you didn't need the higher pressure.

[Thumper68]

I'll be so glad once I get insurance compliance taken care of and I'll be willing to fine tune my settings without it involving 7 different phone calls between at least 4 people.


[/quote}

Insurance doesn't care about your pressures. They only care if you are using the machine or not. I was adjusting my pressures the 1st week. My insurance never said a word. In fact I received a letter from Lin(don't)care this week that I met compliance.

If you start adjusting your pressures based the input of the fine folks here your therapy will greatly improve, and you will feel impowered by taking control oy your own therapy.

[Shanshsin]

Excellent point palerider! I'll plan to tinker with the EPR level in the near future and see if it helps. I'll hope that it doesn't make for worse aerophagia issues. The three nights of CPAP has had me feeling like I've been downing way too many carbonated drinks. Maybe if auto mode only needs to go that high during REM it won't be as bad though.


D.H. I agree on the AHI. I don't want to settle for 5, but it's a goal to get a consistent value for starters. I've likely had apnea events for 15-20 years now. The past 8-9 I just figured I was permanently exhausted since our twins were born. Hopefully even 5 will help me feel a little more alive for the interim. The first two weeks they left me on APAP 10-20 cm, and there were OSA events nightly with pressure over 19. I should probably check with my insurance provider to see what their guidelines are for covering a bilevel machine. If they require a more prominent "failure" before they'll cover it then I may have to consider looking for a used machine if things don't settle down as I acclimate to life with the mask.


Thumper68, I totally hear you. Having worked in healthcare(pharmacy) for nearly a decade I tend to give "their way" a fair chance at least. But once I'm certain that insurance is going to pay for my machine, and they're happy that I'm compliant I will definitely be self adjusting as well as taking care of the little modem issue. I'm giving the neurologist one more appointment to see if he'll do anything other than bill me for the 10 minutes he spends telling me what to do. Then I'll either find a different doctor that will work with me or see if my GP would be willing to write me an RX if I need to get a bilevel machine. Her hands may be tied depending on hospital policy though.

Think I'm off to lala land with my APAP setting restored before insomnia kicks in.
Thanks again everyone!

[Shanshsin]

Follow up -

Been a few days, lots of phone calls, and a few crappy nights of sleep taking care of a sick child.

I finally got to talk with DME about my concerns over the OSA events at higher pressure. But they told me for insurance coverage to code for a bilevel machine I'd either need to have some other underlying health issues or really struggling with the apap machine. And of course my average is falling under the treated category as far as they're concerned which would make it even more difficult to get one covered. They did tell me it is a different billing code though, so if it becomes necessary, there shouldn't be any issues getting it covered.

I also called my old insurance, according to them the claim for my ResMed has been paid, said I shouldn't owe anything. Maybe I'm not quite as off to the races to hit max out of pocket again this year(daughters tuft fracture and ER visit is likely to make up for any perceived gains).

I'll add a couple of SH screenshots since they switched me back to APAP mode 13-20 cm. Think I'm having some leak issues, either due to messing with my straps or trying to bury my face in my pillow. Going to try and get 3-4 decent nights of sleep before I change anything. Now if I could sleep in tomorrow and the 3-5" of snow would somehow shovel itself tomorrow might be a pretty good day.

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[palerider]

If you can handle it, reducing the EPR *might* reduce your AHI. But it won't feel as comfortable, since that'll effectively raise the pressure.

[Shanshsin]

I believe that is going to be the first planned change palerider. Maybe Friday or Saturday night I'll back it off by 1 cm and give it a few days and then another point if all is going well.

Last night was a short night, but still moving in the right direction. Maybe I managed to stay on my side more.

[palerider]

I believe that is going to be the first planned change palerider. Maybe Friday or Saturday night I'll back it off by 1 cm and give it a few days and then another point if all is going well.

Last night was a short night, but still moving in the right direction. Maybe I managed to stay on my side more.

That one's not too bad

[Pugsy]

My first money would be on a couple of REM clusters. I see those myself occasionally. Timing is about right for REM and maybe on your back for those to get a double whammy. Rest of the night looks really good.