Frustrated

[Perrybucsdad]

Well, I have had a rough few nights. My AHI keeps going up (mostly obstructive) and I keep telling myself that I have been sick this past week, but yesterday I felt really well and the night started out well. The problem was about 3am. See the chart below, and then look at the numbers for the month and let me know your thoughts. My 95th% is right up on the max, and I'm starting to wonder if the APAP is the right solution, or if I need something that will deliver more pressure (but what as I thought everything only goes to 20cm).

[Pugsy]

Hmm.. Looks like maybe REM cycle and/or maybe supine sleeping or both.

Quit worrying about the maximum for a bit. How about trying 14 minimum? Your machine is taking too long to get to where it needs to be to prevent the super duper events which are probably either REM cycle related or supine related or both. It looks like you are getting close to the point where you might find BiLevel more comfortable. Especially if that minimum needs to be in the 15 cm range.

I forget...did you try 14 but have aerophagia issues?

[Perrybucsdad]

I don't believe I have ever gone above 13cm, and yes I have had issues with aerophagia, but surprisingly, I have not had them lately (not sure what changed, but I know my loving wife is happy). So 14cm min you think, eh? I just don't think that will even do it as if you look at the one cluster, it was around 19cm and still having events like crazy. I guess it can't hurt to give it a shot, but I sort of wish this thing went higher than 20cm.

[apneawho]

I am not sure John, but would it be appropriate to talk with your doctor about BIPAP? Maybe some others here could speak to whether that may help you in your particular situation.

[Pugsy]

In all honesty, I don't think 14 will get it either. I think 15 minimum. I think that a bump from 13 to 15 will blow you up like a puffer fish. I think getting to it gradually will be easier on you. But if you want to suck it up and try 15 then go for it. I don't think centrals will be an issue. You hit 20 without creating a truckload of them.

Can you look at this thread? See what happens if the minimum is set properly? The maximum settles down.
viewtopic.php?f=1&t=39869&st=0&sk=t&sd=a
Will it work for you? I don't know but might as well try. Sure not getting anywhere this way.

Even if you do get to change to a BiLevel machine of some sort you still need to find an EPAP pressure that will work and think of your minimum APAP as a BiLevel EPAP. It isn't exact same thing but close.

[Perrybucsdad]

I'm really not bothered with the higher pressure to be perfectly honest. When I first started CPAP therapy, hitting a 14 was mind blowing (pardon the pun) but now, I don't even notice it.

My only concern about BiPap is I am renting to own the APAP S9 that I have. Will the DME take it back in exchange for the BPAP? Not sure of the answer.

Apneawho... that's the same question I keep asking myself too. That's why I sort of reached out to him today and waiting to hear from him. I have a feeling he will say let's ride it out a little while longer, but part of me wonders with my 95th% being so close to 20 if it will resolve.

Pugsy, I will check that thread out and see what it has to say regarding a higher min preventing the need for a higher max. Sounds interesting and like it can logically make sense (bust since when does my body follow any logic structure).

[Pugsy]

My only concern about BiPap is I am renting to own the APAP S9 that I have. Will the DME take it back in exchange for the BPAP? Not sure of the answer.

Actually most likely they will do it without any issues. It happens a lot. CPAP doesn't work well for whatever reason (usually higher pressure issues) and the doctor says that medically you need different machine. Another reason why insurance companies do the rent to own thing. Some insurance companies actually insist on a "failure" with cpap before they will go with BiLevel and then for those needing the really high dollar machines for centrals...insurances often require "failure" with all of the less expensive models.

I really do think that you have a strong REM cycle component to your clusters. We already know you have a supine component. Look at the hypnogram here and look where normal REM cycles occur...especially in the wee hours of the morning.

Then look at your clusters.

I know you think the maximum needs to be higher but even if your machine went to 30 and hit 30....if the minimum doesn't give it a good enough head start your AHI will still be in the toilet. Having a sufficient minimum is absolutely the most critical aspect.

[Perrybucsdad]

Okay, very interesting Pugsy, so let's say I do have a Rem component (seems about right timing being 4 hours into sleep), isn't REM sleep good sleep (I had hardly any REM sleep in my sleep study). So if the REM is a problem, how do you fix the problem? Avoid going into REM sleep?? That would seem counter productive.

[Lizistired]

I'm curious if you are getting more REM now and thus more obstructions. I don't recall if that was a problem in your initial study.
I wish you would include the flow graph in your screenshots. My REM cycles are easily to spot with the flow and limitation graphs.

[Pugsy]

So if the REM is a problem, how do you fix the problem? Avoid going into REM sleep?? That would seem counter productive.

Remember I am documented worse in REM... sleep study AHI 53 in REM vs AHI 12 in non Rem.
I face this very situation every night and here is what I have found. I do not seem to have any strong positional component.

Do we know for certain that these clusters of yours are REM? Of course not, we don't have an EEG to go along with it.
It is just something we like to sort of use to give us an explanation for things.

Bottom line is whether these clusters are REM or whatever...they are unwanted. No matter the cause they need to be stopped. Even if they were 100 % related to supine position we don't know if you would need less pressure or not. Some people do need less pressure on their side and some people it makes no difference. Bottom line again...they are unwanted and need to leave.

But for discussion let's say these are REM related:

1. REM varies every night. We can't control REM and we don't want to. We need the normal cycles of sleep which include REM for the body to restore itself.

2. Some nights my REM events don't need any super pressures to treat and I might rarely get above 12 cm..some nights I might need 18 cm. My minimum is 10. It happens to keep my clusters away. If I drop my minimum to 8 cm... I have clusters exactly like you had last night. With almost the exact AHI and worse in the wee hours of the morning.

3. So what to do? We try to find a minimum pressure that will take care of the "ordinary" events be they in whatever sleep stage they occur and still give the machine a good head start on the elevated pressures needed for these super duper hard to kill events. When the minimum is too low the machine just can't respond quick enough if the event is a super duper tough guy to kill. The machine tries but by the time it gets there all hell has broke loose and it just can't deal with things. The super duper tough events come and go and wave to the slowly increasing pressure as they go by.

That's how to look at it. Some events need minimal pressure to be prevented...other events need much more pressure to be prevented. Doesn't matter what caused them (REM or supine) they are unwanted. The only option is to find a pressure that will prevent the super duper tough guys and still be comfortable. You could probably use straight cpap at 18 and get a nice decent AHI but who wants to use 18 all the time? Sure not me. Besides we don't necessarily have the super duper tough events every night.

FWIW I look at supine the same way. If things are worse supine and we can't get by with sleeping on our side for whatever reason...deal with them in the same way. I don't care what causes the little buggers..they have to be dealt with in some fashion. Even if supine with a touch of REM component we can't control REM so just deal with it and sleep however you want. Unless there is a marked reduction in pressure needs from supine to side sleeping, why bother? Let the machine do the job it is designed to do.

[robysue]

One piece of clarification: The Resmed S9 VPAP Auto (bi-level) and PR System One BiPAP Auto both have 25cm as maximum pressure I believe.

I
My only concern about BiPap is I am renting to own the APAP S9 that I have. Will the DME take it back in exchange for the BPAP? Not sure of the answer.

Can't say what your DME will do, but I can tell you what mine did when I was switched from the S9 APAP to the System One BiPAP Auto:

1) They did NOT charge me for the new humidifier
2) They applied all rental fees to date directly to the rental of the BiPAP, so every dime I'd already spent on the S9 was just transferred over to paying off the BiPAP.
3) They recomputed my monthly rental fee so that the new BiPAP was paid off at the same time the original S9 would have been paid off. Obviously this meant that my monthly rental fee went up by quite a bit since the System One BiPAP lists for almost twice the cost of the S9 APAP.

Your DME obviously may differ. It's worth giving them a call before hand and finding out exactly what their policy might be.

Now, as far as whether your doc will say the BiPAP will be useful: That's a judgment call: Obviously if in a week or so the problem resolves and the AHI goes back to where it's supposed to be and that 95% level goes back where it had been before all this started, then prudent waiting may be in order. But on the other hand, another question is if in a year or two, if this problem recurs and does not resolve itself that time around, would your insurance would pay for a new VPAP/BiPAP after the rental for the current S9 APAP is finished and you own the machine?

As far as pugsy's suggestions about bumping that min setting up and her rationale for making it: I tend to agree that there is evidence the S9 took too long to respond. But you are also maxed out at 20cm for almost an hour during the worst cluster. And if that is happening on a regular basis, you may need both an increase in minimum pressure AND a machine that can allow the max pressure to be more than 20cm.

[jamiswolf]

Hi PBD,
Sorry for this step backwards for you. Just wanted to follow your thread.

Don't know about Resmed but Respironics S1 BiPaps go up tp 25cm. Hope you get this solved w/o going that high Maybe as lingering symptoms of your recent illness fade, your therapy will get back on track.
Jamis

[Perrybucsdad]

Thanks all for your responses. Liz, I have posted a 4 hour window of those two flows below, and I also copied my sleep study below.

Robysue and Pugsy, yes I can understand increasing the pressure, but the higher I keep making my lower pressure the closer I am to true CPAP. Part of me wonders if I shouldn't say eff-it and max it to 20 and let it stay there and see what my AHI would be. I'm tolerating the pressure so the only issue would be starting at that pressure. I could then drop the pressure a half point each week until I see an increase in AHI.

The scary this though is what if I do the 20cm min experiment and my AHI is still high? Then what are my options?

EDIT: Robysue... why did you go from ResMed to PR? I would have thought it would have been easier to stay in the same family, or is there a better feature set with PR?

[Pugsy]

BTW I am currently trialing a PR S1 BiPap auto but in straight BiLevel mode, not auto. Too soon to really comment about results except I am very pleased and will start a thread on it very soon. I am trying it not because of any pressure problems, but because I wanted to and will explain in more detail when I get around to composing my thoughts.
I will tell you this...if you get to try a BiLevel, I doubt very much you would ever want to go back to the Autoset.
The comfort is like night and day difference. Spoiled me completely.

Regarding your possible maximum pressure needs...we don't know at this point for sure where it might want to go.
We do know for sure that the minimum is not working well. So I always say go with what is obvious and easily altered first and then worry about the other later should it still need to be worried about. I have seen my APAP max out also but it doesn't mean that I needed more than 20. You might, you might not. You don't have a machine that will go higher to test it right now...so test what you do have and can.

[Perrybucsdad]

I guess it would help to post the two images I said above... sorry about that.

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