BiPAP working, but only partially.. ideas?

[Xney]

Greetings,

I've been a user of CPAP/BiPAP for a while now, after a very long journey to get it to the point it is now. However, the subjective improvement as I measure tiredness and the other symptoms of sleep apnea is only about 40 to 50% better. While this is a very good thing compared to where I started, I'm trying to figure out what the remaining bit is so I can actually feel rested.

A quick recap of what I have done, where I am now:

Fatigue started to appear around 2000. I went un-diagnosed until about 2008, as it came on very gradually. The first true sleep study I had showed an AHI of about 40 at that time. It took me a very long time to get used to PAP therapy - I'm one of the people who just had so much trouble. It took me, I believe, about 12 months before I could sleep 5-6 hours with it, but now I can sleep 90-95% of the time without interruption.

Subjectively, I had my best sleep about 18 months ago at a CPAP setting of around 12 or so. (I had trouble with BiPAP 17/13 as originally prescribed in the first sleep study) At that point, it seemed to stop working all of a sudden, very abruptly, and it doesn't feel like it has worked right since. The doctors suggested I try BiPAP, and I've tried various BiPAP settings from 10/15 all the way to 20/15. I felt like 20/15 was just way too much air (and actually making it worse), and convinced them to try Auto-BiPAP which is where I find myself now. The setting is 12 to 20 with a pressure support of 4 or 5, so the iPAP is around 15-16. Most nights the machine spends almost no real time at 16 or higher.

One of the constant sources of contention with the doctors has been the pressure settings. I feel like when the pressure gets higher (especially in the 18+ range) it makes me sleep worse as the pressure breaks down my breathing. They look at the sleep studies and say 18+ looks best. I see the same sleep studies and the numbers look identical from 16 to 20 IPAP, except centrals get worse. Anyways, once I convinced them to let me try auto and the machine spent hardly any time at the higher pressures, they've stopped bugging me about it. I don't remember my sojourn into 19 and 20 pressure settings fondly, and I was veeerrryyy tired during that period.

I use a swift LT mask (the only one I've found i can consistently wear). Though the best CPAP results I've had were without any type of mouth taping (and lower pressure), I went through a lot of trial and error with leaks and finally have controlled them with strong taping. It doesn't work 100% of the nights, but most nights the leaks are pretty low. The only tape I've found to be strong enough to stay on is Micropore, but it does work.

Now, my problem is, the auto PAP stays at the low end of the range, the numbers look good, low AHIs, low leaks, etc., yet I feel only half better at the top end of the range. Of course it could be a hormonal problem or something else, but it really does feel like sleep apnea. All secondary symptoms like dream fragmentation, reflux, etc. are still there, just less than untreated. The sleep study shows a few PLMDs but I don't think to a level which is a problem. At least, the doctors didn't feel like it was.

I have had some centrals in every sleep study but I think not a crazy amount. I know the home machines kind of suck at detecting them, though.

One thing that has always been in every sleep study and possibly under-reported is I have a LOT of hypopneas. They are still the main events that show up, rather than apneas. Treatment is the same for either case, of course. I have asthma and take the combination steroid/broncho meds like advair, but I don't know if that's an issue or not. According to the machine, my AHI is well below 5, usually 2 or maybe 3, so shouldn't that be treated?

I'm kind of running out of ideas of what it could be, or things to try, so I thought I would throw out my story here to see if anybody had any ideas. Could it be mixed sleep apnea? Bad machine? Limb movements? Help!

This is from the sleep study with Bi-Level, starting at ~15 ipap going up to 18 or so. Sorry for the quality, the scan they sent me is not good.



This is a typical decent night from my home BiPAP. It has a bit more events than is standard, and a bit higher pressure than usually happens. (had a nasty cold)



I have all of the studies and data if anybody needs to see anything more.

I don't know if it works for other people, but I can tell improvements or worsening in sleep quality usually within 1-3 days. Sadly, my doctors think it takes a month to try anything.

Addendum: this is a summary from the bi-level sleep study. I just seem to have all these hypopneas, and they've always been around, no matter the pressure. Does it mean anything? I can't believe I need a pressure setting of 25, it's like I'm not breathing deeply enough or something.



thanks for any insights or suggestions!

-k

[old64mb]

Xney, can you post the longer term data from your machine while at the various pressures? It's hard to make any sort of comment based on a single night when you had a cold.

[Xney]

Sure, what kind of time frame do you want to see?

Some nights the tape doesn't work great, so I have more leaks. Once in a while I rip the mask off without waking up. But probably 2/3rds or more nights are decent ones. I just picked a recent one as a typical case.

The long-term numbers look good, like AHI <= 3.

I was in Hawaii for a week about a week ago, so there's some nights with less hours in that period due to futzing around with it and such.

[GumbyCT]

I don't know why they went over 17/12 unless you still had leg movements? Something seems missing.

[Xney]

Here's some one-month data. 6-month looks about the same. I've been tweaking the taping to reduce leaks over the last 6-12 months, so they have generally gotten better and better. The last month or so I think is about as good as it can get in terms of leaks.

There's one week where I was traveling so the numbers look worse in the middle.

Usage data:



Details on pressures and numbers:



I can post a 6 month set if you want, but it looks pretty much the same, just some more leaks as you go backwards in time.

P.S. the max leak is always that high because I prefer to turn the machine on before attaching the hose - except when traveling with other people in the hotel room

[Xney]

I don't know why they went over 17/12 unless you still had leg movements? Something seems missing.

Heh funny story about that. My original prescription was for 17/13, it's been really hard to talk to them about anything lower just because of that.

At home I've been using the auto for ~5 months, and it's worked just as well. However, in the sleep study, their machine didn't have the capability to do auto. So I told them, "OK, then start at 15 and go up to 17. I rarely go higher than 17". (This mimics what happens at home with the auto)

The tech in my sleep study apparently didn't remember that, and did a full bi-level titration where he did go higher than 17.

It annoyed me because the whole point of the sleep study was to see what ELSE was going on, but a lot of the night was wasted at a higher pressure, IMO.

[old64mb]

Yeah, the summary sheet was what I and others needed to see to get a better feel.

Ok, few things.

First, you're consistently showing not just hypopneas but apneas over a long sample - in fact, you're still showing more apneas than hypopneas. If that one night is typical, your machine is spending an awful lot of time increasing pressure to chase apneas, which isn't going to be as helpful to you as just finding an EPAP pressure that keeps your airway splinted open.

Second, that one night shows a leak pattern that's consistent with the taping not being entirely effective (unless you've not switched out nasal pillows for a while, of course, and they're leaking instead). Ideally, you should be seeing a flat line. 'Mountains' on the other hand tend to be a problem, especially when as in your case they also seem to mostly correlate to when the machine adjusts IPAP upwards.

The two combined make me kind of feel like you're not getting a particularly consistent application of pressure. A few things can be done about that, but first off, have you ever tried one of the hybrid masks?

[(david carolina)]

I dont want to sound ignorant but I probably will, lol as Im just now learning how to interpret data on sleepyhead. I have more expertise with accompanying illnesses contributing to worse OSA issues.

Your' statement Anyways, once I convinced them to let me try auto and the machine spent hardly any time at the higher pressures, they've stopped bugging me about it.

rings true. After my first sleep study my ignorant (and now fired) local sleep doc said "youre fine, come back in 7 months'. I insisted my pressure was too low. He "accomodated" me (with a superior bemused expression on his face) by raising one notch. The second sleep study my machine was "MIRACULOUSLY" re-set to 13 without any explanation or apology. Now, I do my own pressures. Quite frankly, I consider two thirds of sleep docs ignorant of basic facts and unwilling to take the time.

Question: have you considered a full face mask? I have a deviated septum so no choice for me, but from all I read on here it sure is a lot of hassle doing nasal. Granted I have leakage problems mostly due to switching from back to side sleeping. But in the long run Ive come away with the impression that full face is more effective even for nose breathers.

[Xney]

Thanks for the reply! I'll try to answer..

Yeah, the summary sheet was what I and others needed to see to get a better feel.

Ok, few things.

First, you're consistently showing not just hypopneas but apneas over a long sample - in fact, you're still showing more apneas than hypopneas. If that one night is typical, your machine is spending an awful lot of time increasing pressure to chase apneas, which isn't going to be as helpful to you as just finding an EPAP pressure that keeps your airway splinted open.

Yes, I actually prefer a constant pressure, but we wanted to try something different. I mainly wanted to do auto to show that I don't need a pressure of 18 or 20.

Honestly, I don't feel like it's made any difference. Everything from 11 to 17 feels exactly the same to me, in terms of fatigue, and anything higher starts to make it worse. (I've spent weeks/months at other pressures between 12 and 20) In terms of the home PAP-reported numbers, the best results have been around 15-17.

I find it hard to believe 20 isn't enough, so that's why I'm kind of out ideas on what to try.

Second, that one night shows a leak pattern that's consistent with the taping not being entirely effective (unless you've not switched out nasal pillows for a while, of course, and they're leaking instead). Ideally, you should be seeing a flat line. 'Mountains' on the other hand tend to be a problem, especially when as in your case they also seem to mostly correlate to when the machine adjusts IPAP upwards.

The two combined make me kind of feel like you're not getting a particularly consistent application of pressure. A few things can be done about that, but first off, have you ever tried one of the hybrid masks?

Makes sense. I agree the tape leaks somewhat, and also the mask tends to slip a little bit at times. This just creates some leakage from time to time, I've spent a year just getting it to where it is now. I can't think of anything else to try as far as leaking goes. But even on nights where the leaks happen to be much more flat than that (which happens sometimes), everything else looks the same.

I have tried 3 or 4 hybrid masks, and they don't fit me, or they're just horribly uncomfortable in the sense of "never going to fit right", not "kind of sucks but you can get used to it". It's essentially the same problem as the full face masks: they are designed to fit people with an average face profile in 1 or 2 standard deviations. because of my facial structure and long face, they just don't seal or fit it. I wish it were otherwise.. In particular for hybrid masks, the nasal part doesn't seal well because of the long face/big nose, and the mouth part isn't on the right part of the mouth, which also results in poor seals. For FF masks, the lower parts which seal the mouth tend to be very, very loose, and only tightening it down to the point where it breaks my face makes it seal. *grin*

I feel like lower pressure actually lowers the leaks a bit, but not enough to make them go away. It's a bit finicky when the seals and tape are baaarely stable. If the leaks are the main problem still, I would be pretty surprised, but I can't rule it out.

[Xney]

Yeah, the summary sheet was what I and others needed to see to get a better feel.

Ok, few things.

First, you're consistently showing not just hypopneas but apneas over a long sample - in fact, you're still showing more apneas than hypopneas. If that one night is typical, your machine is spending an awful lot of time increasing pressure to chase apneas, which isn't going to be as helpful to you as just finding an EPAP pressure that keeps your airway splinted open.

Yes, in terms of what the home machine reports, there's more obstructive apneas than hypopneas. But both are quite low, combined they're usually 2 or maybe 3. However, every sleep study shows a LOT more hypopneas. I'm quite skeptical about the machine detecting hypopnea events correctly. Whether this is because of leakage or just the machine not being smart enough or detecting enough, I don't know. Without putting my head in a diving bubble, I'm not sure how to find out, except to go by what the sleep studies show with their presumably better equipment.

It might all be a red herring, too..

Second, that one night shows a leak pattern that's consistent with the taping not being entirely effective (unless you've not switched out nasal pillows for a while, of course, and they're leaking instead). Ideally, you should be seeing a flat line. 'Mountains' on the other hand tend to be a problem, especially when as in your case they also seem to mostly correlate to when the machine adjusts IPAP upwards.

The two combined make me kind of feel like you're not getting a particularly consistent application of pressure. A few things can be done about that, but first off, have you ever tried one of the hybrid masks?

I actually switch nasal pillows every week, paying for it myself. Most just don't seal well after a week or so, even with daily washing. I think this is because they're just not quite the right size - I'm sort of between a medium and a large on the large side. The other mask I have been able to wear but don't like as much is the swift FX, and it has the same problems. Just not a perfect seal, but nothing has had it. The LT has been the best seal i've gotten.

See my above post for hybrid masks. (short version: none fit, so far)

The taping I'm sure leaks somewhat. I have tried a ton of different taping methods. What I do now is take 3" wide micropore and cover the whole mouth with about an 8" strip. It's the only thing that's come close to working. I don't think any other tape would be stronger without ripping my face off, but I'm open to suggestions. Fortunately, I have fairly robust skin or it could be a lot worse.

The second best taping thing I found was using butterfly band-aids vertically, 4 of them. However, they had a tendency to shift or fall off, about a 50% chance per night.

Given the tendency at the higher pressures I'm at for it to just go out of my mouth once I go to sleep, any tape solution has to be quite strong. The micropore tape is pretty good, but I still blow it out on occassion.

Any ideas or suggestions are welcome

[Xney]

I dont want to sound ignorant but I probably will, lol as Im just now learning how to interpret data on sleepyhead. I have more expertise with accompanying illnesses contributing to worse OSA issues.

Your' statement Anyways, once I convinced them to let me try auto and the machine spent hardly any time at the higher pressures, they've stopped bugging me about it.

rings true. After my first sleep study my ignorant (and now fired) local sleep doc said "youre fine, come back in 7 months'. I insisted my pressure was too low. He "accomodated" me (with a superior bemused expression on his face) by raising one notch. The second sleep study my machine was "MIRACULOUSLY" re-set to 13 without any explanation or apology. Now, I do my own pressures. Quite frankly, I consider two thirds of sleep docs ignorant of basic facts and unwilling to take the time.

I've found the sleep docs to be very helpful, but they spend 95% of their time getting people to do the basic CPAP stuff, IMO. They just have a hard time thinking outside the box. I've just reached the point where they're out of ideas on what to try, or what it could be.

Maybe I'm just very familiar with my sleep (or lack of it), but I've been able to tell every time a change has been made the first night (or at worst, the second) when I wake up how it worked. I know it was 10% better or 5% or whatever. But they wouldn't even consider it without waiting 3-4 weeks and having some data, which of course made trying things VERY slow. I could have gotten to where I am now, 40-50% treated, in half the time, easily.

Question: have you considered a full face mask? I have a deviated septum so no choice for me, but from all I read on here it sure is a lot of hassle doing nasal. Granted I have leakage problems mostly due to switching from back to side sleeping. But in the long run Ive come away with the impression that full face is more effective even for nose breathers.

I've tried a bunch and they just don't fit. I don't mind nasal. It was uncomfortable/weird to start with, but I'm used to it now. The full nasal masks actually don't fit me either (they have to be tightened absurdly to seal), so I'm lucky there are nasal pillows! They're not perfect but as good as it's going to get until there's a better pillow system.

I would try/use the full face mask just because of the mouth leaks, if I had one which could fit. *sigh*

The hypopnea thing has made me wonder if there's a disorder that could be related to breathing effort amount, rather than not breathing like with centrals. Like there's enough air space, perhaps, if I had more muscle effort, rather than it being purely a function of it being cut off too much. I have asthma and have had it my whole life.

[Pugsy]

How do you rate your overall sleep quality? Do you find that you wake up fairly often during the night for any reason?
Do you take any meds at all ...even something OTC? Anything that might have a minor side effect on how a person feels the next day?
Do you have any other general health issues that might impact how you feel during the day?
Is your bed comfortable? Any aches or pains.
Do you wake up with mask leaks or mask issues?
Do you notice that you might feel marginally better after the nights that you have received more hours of sleep as opposed to the short nights? How often are those red nights with less than 4 hours?

[Xney]

How do you rate your overall sleep quality? Do you find that you wake up fairly often during the night for any reason?

I pretty much sleep through the night, I'll wake up once an hour or two before the alarm clock normally.

Do you take any meds at all ...even something OTC? Anything that might have a minor side effect on how a person feels the next day?

Only thing I take is asthma medication and nexium.

Do you have any other general health issues that might impact how you feel during the day?

I don't think so. Though there always could be something.

Is your bed comfortable? Any aches or pains.

Very comfortable, thank goodness!

Do you wake up with mask leaks or mask issues?

Sometimes, but not often.

Do you notice that you might feel marginally better after the nights that you have received more hours of sleep as opposed to the short nights? How often are those red nights with less than 4 hours?

It's pretty rare to have less than 4 hours, maybe once per month. The ones in the graph above were due to travel and the associated problems getting things dialed in and sleeping in a hotel.

I notice a difference at less than 6 hours, and I prefer to get 7 hours or more. Haven't really noticed a big difference between anything over 7 hours. Sometimes I just wake up and can't go back to sleep even if it's 6.5 or 7 hours, like the body just decides "OK, no more sleep!" (Despite being tired)

[Pugsy]

Okay, none of usual suspects that might affect quality of sleep. You would be surprised how many people complain of feeling less than optimal who then go on to say that they have multiple awakenings or take meds that are known to make a person feel like a zombie.

Hours of sleep are important though and sometimes just a few more minutes makes a pretty big difference so you might want to keep a log about hours of sleep and how you feel so that you can maybe spot a pattern. I know that if I get less than 7 hours of sleep I have marked sleepiness the next day. 7 1/2 hours and I feel decent but if and when I am lucky enough to get 8 hours or so I feel hugely better. Problem being that sometimes the dogs don't let me sleep that long.

I don't know what to make of your pressure comments as I sort of got confused about which went where and what it produced.
If your OSA is satisfactorily treated at a pressure that allows you to feel better then I don't know why the need to use higher pressures. If higher pressures are disturbing to sleep quality for some reason and using a slightly lower pressure helps with sleep quality and lets only an occasional apnea event sneak past the defenses then perhaps a compromise is in order. We can't realistically expect to zap all events anyway. Number one goal is to feel better.

Only other thing I can think of and the presence of the hyponeas caused it to enter my mind was UARS. Upper Airway Respiratory Syndrome. Short version is that they are minor flow limitations that don't make criteria for hyponea or obstructive event. You might google it and read up on it to see if you think this might be part of your problem. Treatment is the same...xpap therapy but often harder to find a suitable pressure because we don't have the typical markers (like the AHI) for a numerical guideline. I don't know that this is part of your problem. Just an idea to toss out for evaluation.

[old64mb]

Yes, in terms of what the home machine reports, there's more obstructive apneas than hypopneas. But both are quite low, combined they're usually 2 or maybe 3. However, every sleep study shows a LOT more hypopneas. I'm quite skeptical about the machine detecting hypopnea events correctly. Whether this is because of leakage or just the machine not being smart enough or detecting enough, I don't know. Without putting my head in a diving bubble, I'm not sure how to find out, except to go by what the sleep studies show with their presumably better equipment.

One thing that may help is if you keep in mind what underlies the numbers here.

Besides comfort, the whole point of using a Bipap is to get two things:

- A lower pressure that splints open your airway and eliminates apneas (EPAP)
- A second, higher pressure that keeps the amplitude of breathing constant and smooths out hypopneas. (IPAP)

Both events are problematic, but most people find that if they can eliminate a combination of the two to something like one per hour they feel significantly better. In your case, the one night (and the monthly data) would suggest that your current treatment isn't doing so at the current pressure, and at the least your EPAP should be at a level where apneas really aren't an issue.

Incidentally, this is one of the reasons I'm not a big fan of the flex protocols on BiPAPs versus CPAPs, as EPAP derived from a titration is the actual pressure required to keep your airway open at all times and thus prevent an apnea from occurring. Too often, a machine will miscalculate the bottom of an exhalation just enough to lower the pressure at the exact wrong time to let your airway briefly close and voila, an apnea. Flex makes a lot more sense on a CPAP running at fixed pressure where you generally have some wiggle room as to what pressure you actually need to keep the airway splinted.

There could be a few things that might be causing your events, but your comments make me feel that the one to deal with first is to look at making sure the pressure you're using actually gets to your airway. My suspicion is that one reason higher pressure hasn't worked for you is that for some reason - taping and pillow fit come to mind - whatever help you should be getting from increased pressure ends up floating away as your mask and mouth leak like a sieve the more pressure that gets put on them. That ends up actually causing more events, which would also explain why you feel worse at higher pressure (since normally, it's pretty hard to tell on a BiPAP).

I'll PM you an idea for improving your seal that I'd prefer not be on the public boards, and then we can go from there.