Respiratory rate

[Fenelon]

Thank you again for your reply and time Pugsy. May I ask one more central related question? If I am still having a few here and there, some of which can possibly be disregarded, what number in my AHI should cause me concern. Please note I am not looking for ideal AHI numbers but a rough number of when centrals become possibly problematic i.e. if I keep having a Clear Airway index of under 5 with many within that number possibly sleep/wake/junk then can I, as you suggest, stop worrying about them and concentrate on leakage etc.? I realise you can only give me an opinion! (Regarding the leakage, I seem to go from little leakage to large leakage every other night even if I don't change anything!)

Best wishes, Fenelon

[Pugsy]

If I am still having a few here and there, some of which can possibly be disregarded, what number in my AHI should cause me concern. Please note I am not looking for ideal AHI numbers but a rough number of when centrals become possibly problematic i.e. if I keep having a Clear Airway index of under 5 with many within that number possibly sleep/wake/junk then can I, as you suggest, stop worrying about them and concentrate on leakage etc.?

If you can keep the central index below 5 and even if every single one of them were "real" and you were sleeping through them (as in any sleep onset centrals weren't repeatedly bouncing you out of sleep) then the doctors most likely wouldn't do anything about them.
We know that probably at least half of your centrals aren't real though...so even more reason for a doctor to not want to do anything about them.
Some of your centrals are definitely SWJ centrals...some are likely post arousal centrals meaning something caused an arousal (you may or may not remember) and IF...big IF..the cause of the arousal was an obstructive in nature event happening if you better deal with the obstructives then the central should reduce secondary to the arousals reducing. And you probably have a real central here and there...we all do.
Unless they are prolonged in duration or causing problems we can safely ignore random centrals no matter what the cause.

In your situation...I think if you can fix your sleep issues the bulk of your centrals will disappear...meaning less time awake on the machine. Easier said than done though.

I once helped a guy whose central index was in the 20s..very few obstructive stuff. Initially I though whoa...complex sleep apnea but the pattern of his centrals just didn't look like a normal compSA pattern. Too many dense clusters followed by short periods of no clusters of anything.
Come to find out he was having some stress issues and some insomnia issues big time and was spending prolonged periods (hours) awake on the machine trying to sleep. Once we got some of the stress issues out of the way and got him to not lay there for hours awake on the machine and got him to actually sleeping half way decently his AHI went down to the low 2s and sometimes below 2.0.

Mask leak battles....it's a war we never really win. Some nights we win the battle and some nights the leaks win the battle.
Do what you can to minimize them and if you wake up and look at the report and you lost the battle last night...well a new battle will begin tonight and you have a chance to win it.
I don't sweat big leaky nights as long as the leaks don't wake me up. It is what it is and I can't do a darn thing about last night. Most of the time I win the battles though...and that's good enough for me. As your your approx 1 hour big leak time...if you slept through it and understand it then move on to the next battle. We can't be perfect 100% of the time ...or at least not without maybe some extraordinary measures and sometime those measures harm sleep more than the leaks harm sleep. My number one goal is sleep....without sleep none of this matters.

[Fenelon]

Mask leak battles....it's a war we never really win. Some nights we win the battle and some nights the leaks win the battle.
Do what you can to minimize them and if you wake up and look at the report and you lost the battle last night...well a new battle will begin tonight and you have a chance to win it.

Thank you so much Pugsy. I have some insomnia issues that I am also trying to tackle, so this information has been really helpful. And your quote above is excellent and gives me heart for the battle tonight!! Excellent attitude!

Thank you again, I'm really grateful.

[Fenelon]

Having read many posts about masks and leaks etc. and having spoken with my girlfriend, we decided to drive over to the local resmed office late this afternoon. I've been trying large masks but I was measured by a different person today and it seems I should be using medium, so I am home with a medium-sized F20 Airfit, so I hope to have better results tomorrow! A little bit of a bummer as we just paid close to $200 for a large Airtouch, which hasn't even made it over to Europe yet , but I am sure we will be able to find a good home for it somewhere Thanks to everyone for their input so far.

[Fenelon]

It gets worse and worse

http://imgur.com/a/MkYWB

Here I am with mask off before 4am, desperate to sleep and unable to. I don't know what to make of these results, the worst yet, as I lay awake/semi-awake most of the night, restless. I eventually gave up as my stomach was beginning to bloat and hurt, despite me trying to breathe normally.

Today's question: the higher pressure is doing nothing, my AHI continues to increase, OA continues to increase and I'm having stomach problems trying to tolerate the higher pressure. Should I remain as is? Will my stomach probably adjust?

(Went back to the large mask, medium seemed to restrict my mouth, but leaks improved nonetheless!).

As always any input gratefully appreciated.

[Pugsy]

Were you on your back during those OA clusters?
Though to me they look like there's a good chance that you were in REM stage sleep when they happened...or maybe both REM and supine.
Do you know if your OSA is worse in REM or not? It's common if it is...mine is.

Limit the max to 15 or 16 and let's see what happens.

We can't have you not getting any sleep due to belly issues.

[robysue]

Fenelon,

As someone who as battled the "can my stomach get more bloated problem" I feel for you.

A real story that I can now look back on and see some humor, but it wasn't at all humorous at the time: On my third night of PAPing I woke up from a vivid dream where I was an intelligent goose being forced to breathe in more and more and more air than I could possibly take in, all the while knowing it was because I was being "fattened up" for foie gras. And when I woke, my stomach felt hard as a rock and was visibly swollen. And yes, I cried, both from the pain and from the fact that I thought I was some kind of freak. It was, in retrospect, the start of the very bad case of CPAP-induced insomnia.

Having said that, let's tackle some of your comments, but not necessarily in the order you have posed them:

I eventually gave up as my stomach was beginning to bloat and hurt, despite me trying to breathe normally.
...
OA continues to increase and I'm having stomach problems trying to tolerate the higher pressure. Should I remain as is? Will my stomach probably adjust?

Since aerophagia has raised its head and your insomnia is getting worse, I'm going to say that maybe backing off on the higher pressure is not a horrible idea. Yeah, in the long run, something is going to have to be done to bring that AHI down, but right now, getting some sleep with the mask on and not making the stomach hurt is also a priority.

In other words, since we know that there's a lot of SWJ stuff in your data, I think we need to concentrate on increasing the sleep and decreasing the SWJ. It could be that just increasing the sleep will bring that AHI down.

Some questions:

1) How much actual sleep do you think you got on this night before it became 4am with you desperate to sleep and unable to?

2) How soon after turning the machine on does the stomach start to hurt? 5-10 minutes? 15-30 minutes? After an hour?

Now to address your real question:

Today's question: the higher pressure is doing nothing, my AHI continues to increase, OA continues to increase and I'm having stomach problems trying to tolerate the higher pressure. Should I remain as is? Will my stomach probably adjust?

The good news is that your stomach should adjust in time. How much time? I don't know.

The bad news (that you already know) is that your stomach hurts enough to make it difficult to use the CPAP in the first place, and that's not going to make it any easier to get used to sleeping with the CPAP.

Again, in going back to my own history so that you learn from it: Aerophagia became a huge, huge issue right away for me. And it triggered a lot of misery and a lot of lost sleep. My husband insisted on reporting the problem to the sleep doctor's office, which turned out to be a reasonable idea. At first, the PA switched me from CPAP to APAP and reduced the pressures (but my AHI was darn close to 0 so that was a no brainer.). But the while the switch to APAP took a small edge off the aerophagia, it didn't fix the problem: More nights than not, I was still waking up, some times multiple times, feeling like I'd swallowed a basketball. Lots of "semi-emergency" meetings with the PA took place as well as more phone calls. In the end, she recommended a bi-level titration to see if that would help. That idea shocked the daylights out of me. But it turns out that switching me to bilevel did help my stomach, although the insomnia was still a huge issue.

How much did the switch to bi-level help? Well, on my first bi-level titration, I had a "wake after sleep onset" period that was well over an hour in length, and I didn't get uncomfortable. And that had never happened before---on the APAP, I would get extremely uncomfortable within 15 of starting the machine.

So one long term idea is to contact the sleep doctor's office and ask for a call back from the nurse or PA. Let them know you are in agony. And you might ask whether a switch to bi-level might be done.

In the mean time, what should you be doing next?

In my opinion, the increase in pressure has backfired: Things have gotten worse, in terms of your discomfort, your inability to sleep, and the AHI. I'd say back off at least a bit on the pressure. But the question is how? Max pressure? Min pressure? or both? And to answer that, I need to know whether you are physically comfortable when you turn your machine on at 10cm or not.

If your stomach can easily tolerate a pressure of 10cm for 20-30 minutes, then you might be better off just lowering the max pressure. Yes, you might get more events, but if high pressure is driving the aerophagia, you might not wake up in misery after the machine increases the pressure.

But if your stomach cannot easily tolerate a pressure of 10cm for 20-30 minutes, then either you need to lower the min pressure for a while OR you need to think about using the ramp.

Here's what I would do if I were in your shoes:

1) I'd lower the min pressure back to 9cm. I'd also lower the max pressure to 15cm in an effort to minimize the aerophagia, even though it may continue to allow too many events to get through.

2) I'd turn the Ramp on. I'd use the following Ramp settings:

• AutoRamp = ON. (This allows the machine to keep the pressure low until it thinks you are asleep.)
• Beginning Ramp Pressure = 7 or 8 (If that doesn't bother your stomach; go lower if you need to. The idea is to find a beginning ramp pressure that you can comfortably use in both the sense of your stomach AND in the sense of feeling like there is enough air coming in through the mask.)
• Ramp Time = 45 (With AutoRamp = On, the machine will ramp up to 9 sooner than 45 minutes if your breathing makes it look like you are asleep. So you might as well allow the machine a 45 minute window for the ramp time.)

The idea is to use the ramp to make yourself as comfortable as possible when you are lying in bed trying to get some sleep.

3) I'd turn the machine off and back on in order to restart the ramp at anytime when my stomach was hurting---regardless of whether it was because I just woke up with a bad stomach ache OR because I'd been lying there for what seemed like hours and the stomach was just feeling like it was getting bloated.

[Fenelon]

Thank you so much Pugsy and Robysue, I really appreciate your help.

To answer some of your questions:

I have no idea if I was on my back. I always fall asleep on my side and think of myself as a side sleeper but my girlfriend was used to nudging me awake when I was on my back snoring. At the moment I am sleeping in the spare room, more for my sake than my girlfriend who thankfully is beyond wonderful with her support, but I have insomnia issues and sensitivity to movement/light etc. So, I can't say if I was on my back or not. What I definitely was was incredibly restless. Yesterday, after the previous horrible night, I felt beyond tired, like I was seriously jet-lagged or had taken some strange medication, so I was exhausted, hence the earlier than normal bed time. But I could not get to sleep. I saw about every 30 minute period on the clock, and sometimes I got up, read a little, visited the bathroom etc. so I am fairly certain I was awake most of the night. It is by far the worst night's sleep I have had since beginning therapy.

I felt quite comfortable when the pressure was 8-16. I had a few stomach issues then but they passed quickly and I tried to educate myself by reading old posts from this forum. Last night my stomach was only an issue towards the end of the night/sleep. However, since moving the pressure to 10 I have become more aware of it, perhaps slightly uncomfortable with it, though last night was the first time my stomach hurt for a while and it didn't pass. As such, taking your advice I will initially reduce the min to 9 and the max to 16 and see where that takes me.

I don't have the data from my sleep study. I am going back in late August and I was hoping I might have been on track by then. I will try and get the data, unfortunately there is the additional problem of living in Germany and my German still being in the learning stage and the doctor's English often not being quite as good as one would like for in-depth medical discussions, but I'll try. I'm not sure that I can make progress before the August appointment due to work commitments (I have already scheduled time off in August). I'm not scheduled for another night in the lab, I'm sure I'm being hooked up to a take home machine but I'll try and get exact information - there may be a slight language problem but everyone here is incredibly helpful and patient with me.

I thought a bi-level was for a different purpose (though I am very new to all this) but I will do some research. I thought my case might not be straightforward. My problem is one of anatomy. I'm quite a thin guy and have an abnormally narrow mouth/throat etc. As a child they removed my tonsils to make it easier for me to breathe. My nose was also obstructed which makes me a mouth breather, a situation that was made worse by a terrible accident some 8 years ago where I smashed my face up pretty good. It was actually an Ear/Throat/Nose doctor here who said a machine would probably help me, as surgery was out of the question given my anatomy.

As for the insomnia, I am trying to deal with that too and realise this is a separate issue. Although I've only had an AHI below 5 twice, both times I felt like a different person the day after, so I have hope that this therapy is going to be worthwhile. My girlfriend and I have already spent a fortune on a custom-made bed which we will get next month and I have been trying to work on the psychological side of insomnia. Even on 'good' nights I normally need a good hour to fall asleep, it has always been this way. I go to bed early as a result to try and counter this.

Thank you again for all your help and support, it really is wonderful and I am very, very grateful. I'll keep you updated.

[ajack]

you could be putting your chin to your chest and obstructing with those clusters, I would try a cheap foam cervical collar to keep your neck straight. to see if it's the problem. Whatever it is i'd say it was positional.

[Pugsy]

I thought a bi-level was for a different purpose (though I am very new to all this) but I will do some research.

Were you thinking that bilevel was just for more complicated cases like those with centrals or some very special lung issues?
While there are bilevels for those special cases, there is actually a wide variety of different types of bilevels available but the bilevel we usually go to for aerophagia issues is just what I call a "plain" bilevel meaning it doesn't do the special stuff for those special cases...like ASV or whatever.

Your use of EPR at 3 makes your machine work like a bilevel machine...that's why we call it a poor man's bilevel.
The problem is that sometimes people need more than the 3 cm drop during exhale (that's the max you can get with your current machine) to keep the aerophagia monster away and still treat the OSA. Plain bilevels can go a bit higher (if needed) plus they have the ability to have greater than 3 cm pressure difference between inhale and exhale...and it's that bigger difference which can help keep the aerophagia monster away and still treat the OSA.

Your OA clusters are timed in what would be likely REM stage sleep.
Google "sleep stages" and look at the hypnograms and note where REM usually occurs. Typically first REM is about 90 minutes after sleep onset and as the night goes on REM comes on more frequently and lasts longer with the greatest amount of REM happening in those wee hours of the morning. With your insomnia issues you are having more of the 90 minute things because you are having more times where sleep onset happens.

The clusters could be positional...and they could be a combination of position and REM.
We can't do anything about REM but we can sometimes do something about position. Build a wall so you stay on your side (I don't like the tennis ball thing because all it does is wake you up so you can turn over and that's not exactly what we want someone with sleep issues to be doing...waking up more) or try the cervical collar thing to see if it helps or not.

Did you purchase your machine out right or was there insurance involved there in Germany?

[Fenelon]

Once again thank you for the replies and suggestions.

Pugsy - the machine is through insurance here in Germany, the only thing I have purchased myself was the AirTouch mask as it is unavailable here and the F10 was causing horrendous marks on my face (the F20 AirFit is much better in this regard but I was happy to buy the AirTouch just to cover all options). I hope to fare better tonight, I don't think I can bring forward the visit to the sleep doctors, work commitments etc. make this very unlikely.

In the meantime I'll lower the pressures and look into dealing with possible positional improvements.

Thanks again!

[robysue]

I felt quite comfortable when the pressure was 8-16. I had a few stomach issues then but they passed quickly and I tried to educate myself by reading old posts from this forum. Last night my stomach was only an issue towards the end of the night/sleep. However, since moving the pressure to 10 I have become more aware of it, perhaps slightly uncomfortable with it, though last night was the first time my stomach hurt for a while and it didn't pass. As such, taking your advice I will initially reduce the min to 9 and the max to 16 and see where that takes me.

Think about setting up the Auto Ramp with a starting ramp pressure of 8cm as well as lowering the min pressure to 9cm

Yesterday, after the previous horrible night, I felt beyond tired, like I was seriously jet-lagged or had taken some strange medication, so I was exhausted, hence the earlier than normal bed time. But I could not get to sleep. I saw about every 30 minute period on the clock, and sometimes I got up, read a little, visited the bathroom etc. so I am fairly certain I was awake most of the night. It is by far the worst night's sleep I have had since beginning therapy.

If you were up most of the night, it's possible you never hit REM. And those clusters could well be SWJ or represent areas where you were almost asleep, but then bounced back to wake. While sleep transition centrals ought to be scored as "CAs", it's possible for a machine to mistakenly score them as Hs or even OAs.

In other words, until you are actually sleeping more and fighting for sleep less, I think you've got to put a premium on addressing the comfort issues over the AHI.

As for the insomnia, I am trying to deal with that too and realise this is a separate issue. Although I've only had an AHI below 5 twice, both times I felt like a different person the day after, so I have hope that this therapy is going to be worthwhile. My girlfriend and I have already spent a fortune on a custom-made bed which we will get next month and I have been trying to work on the psychological side of insomnia. Even on 'good' nights I normally need a good hour to fall asleep, it has always been this way. I go to bed early as a result to try and counter this.

Other than going to be early (to try to counter the hour it takes to fall asleep), what specific things are you doing to try to deal with the insomnia?

And, as counterintuitive as it feels, going to bed early may be aggravating the insomnia rather than helping it.

Again, speaking of my own history with insomnia, CPAP, and dealing with aerophagia: Before CPAP, it would take me 45-60 minutes to fall asleep every night, and it never bothered me since I used that time to do some elaborate (and relaxing) daydreaming. But once I started CPAP, that long latency to sleep wound up allowing (perhaps even encouraging) me to focus way too much attention on the aerophagia issues, the air venting out of the mask's exhaust vents, and how miserable I was. All of which made it even harder to get to sleep, and all of which lead to some pretty serious anger issues. (And it's even harder to get to sleep once you're in a rage.)

So when I finally started my cognitive behavior therapy for insomnia (CBT-I), the first two goals the PA and I set was "reduce the sleep latency to 15 minutes or so" and "consolidate the sleep cycles". Quite honestly I didn't really think it would be possible to reduce my sleep latency, but at the same time I understood the idea: If I could just fall asleep before I got too uncomfortable, particularly from the aerophagia, then there was a better chance that I would actually get some decent quality sleep.

As tools to encourage my body to learn to fall asleep much more quickly, the PA had me do the following things:

1. We set up a so-called sleep restricted schedule. Not much fun, and it's not possible for everyone to do it, but in my case it worked very well.
2. We set a formal bedtime that was based when I needed to get up, the sleep restricted schedule, and when I normally finally fell asleep rather than when I typically went to bed.
3. I was told to (a) NOT go to bed any earlier than my formal bedtime, regardless of how tired/exhausted/sleepy I felt, and (b)NOT to go to bed at my bedtime if I didn't actually feel sleepy. In other words, if I wasn't already feeling sleepy at bedtime, I was told to stay up and continue doing relaxing things until I felt sleepy.
4. I was told to make sure that I could NOT watch the clock once I got into bed. Clock watching is a common bad habit that makes insomnia worse in many people.
5. I was told that if I was not asleep in what felt like about 20 minutes or so, to just get up out of bed and go do something else, but NOT look at a clock. And stay out of bed until I started to feel sleepy. Same thing when I woke up in the middle of the night: I was told to NOT look at the clock and to give myself what felt like about 20 minutes to get back to sleep. And didn't fall asleep within that guesstimated 20 minutes, I was supposed to just get up and go do something else for a while, again without looking at a clock.
6. I was told to get up at my desired wake up time regardless of how little or how much sleep I thought I got. (Yes, that was the killer. But it was also an important part of the CBT-I and it worked well for me.)

In less than a month, my latency to sleep went from 45-60 minutes (with lots of "get out of beds" that first week or so) to consistently being about 10 minutes. I was amazed at how much better my stomach felt once I was falling asleep within 10 minutes of masking up instead of 45 minutes. It took longer for the CBT-I to reduce the number of middle of the night wakes and, more importantly the length of the middle of the night wakes, But within a few months I was pretty much sleeping at least 85-90% of the time I was in bed. And that also made things easier.

My sleep is still more fragile than I'd like: When the stress goes up for any reason, I tend to wind up going to bed much later than my desired bedtime because I know I won't fall asleep before the CPAP makes my stomach hurt. Likewise, when my stress goes up, the number of middle of the night wakes usually goes up and the number of wakes I remember goes way up.

My point in telling you all this is that I want to suggest that you rethink your bedtime strategy. Think about when you finally get sleepy. It's worth trying to put off going to bed until you are genuinely sleepy rather than just physically tired and exhausted.

I also think you might profit from reading Sound Sleep, Sound Mind by Dr. Barry Krakow. The first half of the book is chock full of quality information about insomnia and ideas of how to self-treat it. The second half is a good read on the connections between insomnia and untreated OSA, as well as some insight into how CPAP should help.

[Fenelon]

Thank you again Robysue for sharing your experiences. I normally try and go to bed each night and get out of bed each morning at roughly the same time, though I go to bed quite early because it takes me a while to get to sleep and some mornings I need to rise early for work. Recently, I have stopped reading in bed and just went straight for the mask, so perhaps I will revert back to reading a bit before putting the mask on. I try my best not to clock-watch but ironically this has gotten much worse since being hooked up to the machine - I look constantly so I can try and remember the time I may be experiencing SWJ for the next day's SleepyHead I will try and work on this. I'm also sleeping in the spare room, which I have made very comfortable, while we await our new custom-made bed. I'm sensitive to light and sound at the moment, so there are less distractions in there for me and I can just concentrate on trying to sleep. Before the last few days I thought the insomnia was much better, it certainly still took me a good hour to fall asleep but I was feeling relatively comfortable with the mask, at least I thought I was getting used to it and was excited that I was doing something that would benefit my health.

So, about two hours before you posted your reply, I bought and downloaded Dr Krakow's book to my Kindle, after you had recommended it to another newbie on another thread! Thank you very much! I'll see how tonight goes before using the ramp as I've never used it before but I will keep it in mind. And I will do my best not to clock watch, though this is going to be a challenge for me! And I look forward to tackling the insomnia with the help of the book and the advice on this wonderful forum.

Thank you again!

[Pugsy]

Quit the clock watching or turn it around so you can't see it. It just adds to anxiety which feeds the insomnia monster.
If you want to do something while awake to help isolate potential SWJ just reach over and turn the machine off and back on again. This will create a break in therapy that is easily seen on the reports and any events around those breaks can easily be identified.

I am with RobySue...you gotta get the sleep first and be comfortable doing it.
We can worry about tweaking the pressures later once you have some for sure sleep.
She's right...some of those OAs or UAs could be SWJ...the machine can be fooled.

[Fenelon]

Quit the clock watching or turn it around so you can't see it. It just adds to anxiety which feeds the insomnia monster.
If you want to do something while awake to help isolate potential SWJ just reach over and turn the machine off and back on again. This will create a break in therapy that is easily seen on the reports and any events around those breaks can easily be identified.

I am with RobySue...you gotta get the sleep first and be comfortable doing it.
We can worry about tweaking the pressures later once you have some for sure sleep.
She's right...some of those OAs or UAs could be SWJ...the machine can be fooled.

Thank you Pugsy! A very simple yet elegant strategy and one I would never have thought of! I'll do my best not to worry about the AHI until I have slept a bit more and a bit better! Thanks again!