Troublesome AHI with (Almost) No Hope

[languageusa]

I had a comprehensive overnight polysomnography in June 2012 and was diagnosed with OSA:AHI was 62.5, including hypopneas and central apneas. During the CPAP titration in August 2012, at a pressure of 13cmH20, the events per hour decreased to 0. The 7-day initial period of the CPAP therapy was based on an auto-pressure of 10-16, and the 95% pressure was 11.4; during this initial period my average AHI level was 4.1, and the periodic breathing was 2.3% So the pressure of 12 was established for my constant pressure. All the nights that followed (7 weeks of so today), with the pressure of 12, my AHI levels became uncontrollable: I was getting all kind of numbers within the range of 9-26 (once even 35), with the average of 18. Not a singe time did I approach the AHI levels of my one-week initial CPAP period. Btw, my periodic breathing index has also increased, it is now between 5-7%. My current CPAP info looks like it belongs to a totally different person, unless the machine is malfunctioning…

I have two separate questions.

1. What are possible causes for this dramatic increase of the AHI after only one week of almost ideal AHI numbers that were, in turn, totally consistent with the CPAP titration results? My doc says “I don’t know”. And he is adding: “I have been in practice for over 30 years, and never did I see such AHI fluctuations.”

2. During the last several days my doc tried auto pressure setting of 9-15, the 95% pressure was 15 (top), but the AHI was still 15. That was just for one day -- I could not tolerate the pressure. He then tried, at my request, a constant pressure of 13. The AHI number was bad again, and I was having some difficulties tolerating that pressure as well. He said then, with irritation, that he had spent a lot of time looking at my data (?!), I am not tolerating the pressure and that he was going to remove me from the CPAP machine and instead put me on oxygen. This troubles me immensely. That would mean I am entering the dangerous zone of an untreated severe sleep apnea again with no hope for recovery. I know the forum members are not doctors, but -- any thoughts, ideas, etc.? Another type of machine, may be?

Thanks for replying to this message.

[Lizistired]

Have you tried experimenting with the comfort settings? Flex and humidity?
Turning off the exhalation relief made a big difference for me and I didn't have to chase pressures.
For some reason I am very sensitive to pressure changes. I don't do well with auto either.
Just something to try.

[Julie]

I can't remember your other posts (its best to stick with the original thread when following up) but if you do have more centrals than obstructive events, or at least a good lot of them vs a handful when just going to sleep), you should ask about trying an ASV machine that's geared to centrals vs others. I don't know a lot about them (others will) but they're supposedly very good if more expensive.

[Burkebang]

First, show us your grapfh, if you can. That will make it much easier to give you advice.

From what you say, I think you should talk to your Doc about an automatic bilevel machine, such as this:
https://www.cpap.com/cpap-machine/respi ... iflex.html

This machine should be able to give you the high inhale pressure you need, but only when you actually need it, while keeping the exhale pressure low enough for you to be able to tolerate it.

[Pugsy]

Did you ever get things situated so you could use the software to see exactly what that AHI consists of?

Do you spend a lot of time awake with the mask and machine on?

We really need to see the software reports to have any clue what is going on with you.

[languageusa]

Did you ever get things situated so you could use the software to see exactly what that AHI consists of?
Do you spend a lot of time awake with the mask and machine on?
We really need to see the software reports to have any clue what is going on with you.

During the initial "good" week (average AHI = around 4) I was mostly asleep with the mask and machine on. The following consistently "bad" weeks I was spending a lot of time awake with the mask and machine on. Some representative software reports are accessible through the links bellow. Many-many thanks for taking the time to look at them!

1. One of the representative best nights during the initial "good" week:
Part 1; Part 2; Part 3
2. One of the representative worst nights:
Part 1; Part 2; Part 3
3. Did not sleep at all for 2+ hours (with the mask and machine on) and got a terrible AHI (this happens often):
Part 1; Part 2; Part 3

[Burkebang]

Do you have any lung or airway decease? Your breathing when you are awake is irregular and you scored quite a bit of snoring and apneas. A few apneas is no problem to score when awake, thats normal, but the high number of events combined with the snoring makes me wonder.

From looking at the graphs, I would say that my recommendation of an automatic bilevel machine is further strenghtened.

You may also want to look into having oxygen blead into your machine. That could make sense specially if you have lung problems and may help and even reduce your pressure needs a bit. In my opinion you need a better sleep doc to help you figure this out. I don't think that oxygen alone will give you the result you need.

[Pugsy]

In the absence of having a different machine available right now and with the history of a lot of probable awake junk cluttering up the reports making it nearly impossible to evaluate things with a history of a lot of awake time if it were me I would go back to what was being used with the "good" reports. That being around 10 cm. Things went to hell with the higher pressures...maybe some of that stuff is related to pressure induced events. If they are related to pressure then higher pressures with APAP probably aren't the way to go. It's painfully obvious that the 13 cm pressure isn't working but we don't know how much of it is maybe related to pressure and how much is related to SWJ (sleep wake junk).

Need to try to reproduce the "good" nights if at all possible. They happened initially...so it is possible that they can happen again. For sure need to limit the time awake on the machine as much as possible so that awake junk can be eliminated from the reports. It makes evaluation really difficult because we don't know if the ugliness is awake ugly or sleep ugly.

I would go back to simple basics and use something like what was shown on the "good" report..and I would do straight cpap mode at 10 cm on the off chance that pressure increases with APAP mode are maybe triggering the centrals and PB.

[languageusa]

[quote="Pugsy"]
To Pugsy:

You cannot imagine how thankful I am!! You know, I feel and can see by looking at my "good" initial week that, potentially, I can be a successful CPAP patient. This doctor of 30 years of experience is such a piece of nothing that it does not take him a second to simply discard you as a patient, as a human. I have just made an appointment with another doctor, and I am dumping the current one.

I don't have the power to change the machine pressure on my own -- everything is based on the docs prescription being sent to my equipment provider -- they make such changes remotely (and reluctantly) on my machine.

You know, yesterday I slept around 2 hours, could not continue with the machine and stopped it. Slept wonderfully without it. Checked the AHI in the morning. Though for just 2 hours, but rather good numbers showed up: Part 1; Part 2

Do you think this is something that might indicate that I can eventually go back to my "good" old weeks?

Thank you -- thank you!!

[Burkebang]

Pugsy, he had a lot of clear airway events even at 10 in the good night. Since the machine hardly did anything to the pressure, he was obviously over titrated then.

In the bad night he had a whole bunch of obstructive apneas even at 13. He is also sensitive to high pressures and the graphs suggests that he don't need a pressure as high as 10 for a lot of the night. The extreme variations clearly indicates APAP mode to me, to get good sleep, when the pressure needs is low and still be able to treat those nasty OA's that definatly needs more pressure than 13.

If I was to suggest something with the present machine, it would be to start with a APAP range of 5-15 with Aflex set to 3. It would be very interesting to see the grapfs produced then. But I'm afraid he'll wake up when the pressure goes high, without more exhale relief that Aflex@3 can give. I have a strong feeling that he'll need more than 15. If so, then an auto bilevel becomes a necessity.

Btw. Is the 460 the one that only gives APAP for a month? If so, he'll definatly need a different machine.

[Pugsy]

Do you think this is something that might indicate that I can eventually go back to my "good" old weeks?

I look at it this way...it worked once before...why not try to make it work again. Your 2 hours last night...that report is quite decent (especially compared to your other reports) and you know for sure you were asleep and most of what is flagged is at the beginning and ending of the sleep time..probably a few awake events in there.
Plus the pressure was 12...not 13.5...I think you need less pressure and not more.

If you want to come over to the dark side and change things yourself... check your private message box in a minute. I will send you the provider manual for your machine and you can have it handy just in case you want to venture over to the dark side.

[Pugsy]

Pugsy, he had a lot of clear airway events even at 10 in the good night. Since the machine hardly did anything to the pressure, he was obviously over titrated then.

I agree with you up to a point. Yes, likely the 10 cm minimum on the "good" night was probably overkill.
I don't know if the centrals on the good night were awake/semi awake or pressure induced centrals. No way to know for sure. That was his first week on the machine and likely some of them were awake/semi awake centrals.
It's real obvious that things go to hell with the higher pressures. Unknown for sure as to why...maybe pressure induced mess or maybe just awake with mask on mess. For sure a mess though.

Whenever there is any chance of someone having pressure induced centrals I have always felt like it is best to proceed with caution and that normally means...avoid letting the machine increase the pressure very much. It is possible for the PR S1 machine to sense awake obstructive events and try to "fix" them...then we have a nasty little circle to deal with...more pressure...maybe centrals...maybe some arousals...maybe awake events triggering stuff we don't want. So for people who might be having some pressure induced centrals the last thing we want is a machine that will increase pressures willy nilly. I don't for one minute think that those obstructives showing at 13 cm are real. I think they are awake junk or an unstable breathing pattern fooling the machine. If they were real we should have had a semi truck load of them at 10 cm...and we didn't.

In this case if APAP range was going to be used...I wouldn't give the machine more max than 10 right now..maybe later.
If APAP is to be used it really needs to be fine tuned and at a vary narrow range. I personally use a wide range with my auto adjusting machine but I realize that it doesn't work well for some people in some cases.
I don't know what is going on here..I know that there is a lot of awake stuff making it difficult to figure out what is going on. When we don't know what is going on for sure it is best to proceed with caution...back up and be more conservative and then maybe branch out once we have a good starting point.

Right now the main goal is get some good hours of sleep without a truckload of awake stuff to try to sort through.
Eliminating or reducing the possibility of pressure induced centrals has to be part of the plan until we know for sure if that is what we are seeing here.
If APAP mode was to be used...maybe 6 minimum and 10 maximum. Tight range to lessen the chance of the machine trying to fix a snore and creating a central as a byproduct. The central is worse than the snore. Besides for some people the changes are plain out disruptive to sleep.

I actually feel like he doesn't need high pressures at all. Probably not even the 10 cm. I think all that higher pressure stuff was brought on by the pressures. I think that probably 90% of it was likely SWJ. We need good solid hours of sleep first then we can better evaluate the data that shows up.
So I prefer to be very cautious and start with the basics. Go slow.

Regarding the machine being a 460...hey, that is not a problem. I know a little trick to make it APAP full time should that end up being the desired mode. Easy to do but not something we do while the modem is still stuck on the machine and the DME and insurance is involved.

Regarding the Flex setting...AFlex of 3 does not necessarily give more exhale relief than 2 or 1 for that matter. It is not the same reduction as one gets with the ResMed machines. Respironics Flex relief is flow based and the actual amount of reduction is based on the force of the patient's on breathing pattern. It ends up feeling more like a breathing rhythm or timing thing than it does a marked reduction in flow. I have used both brands of machines. It doesn't work the same as the ResMed does.

You may think that I am being over cautious about the centrals and the desire to use cpap or a tight apap range but if I am going to err I always want it to be on the side of caution.
So for now...I would rather see nice solid hours of sleep at any pressure more than I want to worry about fine tuning the pressure and worrying about a few snores. 10 cm may be overkill...may not. Gotta start somewhere though. Why not start with what worked decently before things got changed all over the place. Ugly reports that have documented "awake a lot" comments cannot be trusted. I have seen reports worse than OPs here that totally cleared up once the awake time on the machine was eliminated. Reports that initially scream "ASV" that are totally wrong simply because of the clutter from awake events being flagged and messing up things.

[Burkebang]

Pugsy, this guy isn't sleeping, if he is it probably is without the machine and he's probably a mess without the machine. So I don't think caution with machine settings needs be a first priority here. First priority would be to get him sleeping on the machine, as you say and find out what's going on, APAP 5-15 will give us the graphs we need to be able to see what's going on and then start to tweak things. I think 5-10 will make the graphs we get much less useful, but it's definatly worth a try if 5-15 wakes him up.

The more I look at it, the more I also wonder what is junk and what is real. The total mess in the last set of graphs, where he didn't actually sleep at all, is bothering me.

[Pugsy]

Burkebang...I know he isn't sleeping....he told us that much.
Caution is indeed indicated until we know if the centrals are real or not. They probably aren't but I don't want to suggest something that is might trigger complex sleep anpea when there are other ideas that would be safer.
Going by the good night with no pressure increases to speak of...I am betting all that garbage at 13 cm is awake garbage BUT there was a truck load of centrals and I am not going to suggest something that even remotely could be considered a bad idea.

Something cause him to change from "good" night and sleeping...to crapola night and no sleep. So far the only change I saw that might account for it was the increase in pressure. I sure don't want to put more pressure in the mix right now.

I might compromise with APAP at a tight range but max at 10 or 11 cm...and minimum maybe 6 or 7. I don't want varying pressures having a chance to disturb sleep though. His sleep is fragile enough right now.
I will be surprised if he ever maxes the pressure out at 11 once he is actually getting sleep.

If he does have complex sleep apnea at pressures in the 12 to 13 cm range and the machine wants to fix snores that need that much pressure....not a good trade off.
Have you read the Firehope thread? I don't know if the image links are still active but here is another reason why max sometimes has to be reigned in.
viewtopic.php?t=68846

I am all for APAP with wide range for most people because the machine won't normally go to where it doesn't think it needs to go but sometimes its reasons for going there aren't the best in some situations. If the machine wants to fix minor snores and flow limitations with pressures to 13 or whatever and in the process triggers complex sleep apnea then we have traded a minor annoyance for a huge monster with the CSA possibility. I just won't go there. It is not good advice. Until I know for sure that those centrals are not CSA...I treat them with respect and try to avoid anything that might make them worse.

[ughwhatname]

I'd like to put a plug in for the dark side. If not for having ventured there, I wouldn't be Day 23 with 100% compliance and happy to use my machine for naps even! And, a very low AHI to boot. And, I no longer feel as if my will needs to be updated right quick.

Do you think this is something that might indicate that I can eventually go back to my "good" old weeks?

I look at it this way...it worked once before...why not try to make it work again. Your 2 hours last night...that report is quite decent (especially compared to your other reports) and you know for sure you were asleep and most of what is flagged is at the beginning and ending of the sleep time..probably a few awake events in there.
Plus the pressure was 12...not 13.5...I think you need less pressure and not more.

If you want to come over to the dark side and change things yourself... check your private message box in a minute. I will send you the provider manual for your machine and you can have it handy just in case you want to venture over to the dark side.