Am I doing myself a disservice? Any Guidance appreciated

[trike-mike]

I'll apologize right now for what I am sure will be a longish post to set the stage. Please bear with me. Any thoughts anybody has would be greatly appreciated as I am becoming somewhat discouraged (ok, a lot)

I probably should have had a sleep study 20 years ago as I have long snored loudly (some occasions when the neighbors made a comment) and my wife (now ex) would comment often in the morning that I stopped breathing in the night sometimes long enough that she was actively listening to see if that next breath came. The ex, however, was one more interested in herself than anything else and nothing was done. Leap forward to more recent times and I was finding myself waking in the morning more often than not with a screaming headache and tired all the time. Even with those warning signs it was one of those things that "I'll get to". The tipping point was a nurse in the recovery room after some knee surgery came by my bed not more than (it seemed) 8 seconds after I was conscious and said "Get a sleep study done. Now."

So I did. I expected it was going to be the typical overnight stay in the clinic with all manner of wires and the like but it wasn't. They sent home a box for me to sleep with strapped to my chest that measured my breathing, blood oxygenation, position, etc. It was hell. I think at one point I managed 90 minutes uninterrupted sleeping before I finally tore all that... stuff.... off and tossed it back in the bag. I fully expected them to not be able to get a diagnosis but the RT said there was a solid enough block of good data to accurately diagnose me with OSA with an AHI of 41.

The next step was to determine my pressure. To do that they sent me home with a Respironics PR System One APAP for three nights with a size small Respironics EasyLife nasal mask. In the orientation, which had 10 new inductees to the hoser hall of fame, they talked about OSA, gave us a brief list of what to look for which included sinus stuffiness and sent us home.

Total disaster. While the mask seemed ok if a bit constricted sitting up in a chair at the orientation it didn't feel merely constricted when I tried to sleep. It felt like I had plastic wrap over my face. When I couldn't seem to get air in my nose, I would of course open my mouth and I experienced that weird feeling of air not able to move via my mouth as well (as I commented on and appreciate the thoughts in another discussion on this board). I think I managed about 90 seconds at any one time that first night until I just gave up.

I called the RT the next morning, explained my plight and assumed (in hindsight, incorrectly) that I HAD to be able to breathe through my mouth. He had me come in to pick up a full face Resmed Mirage Quattro. This was better, if still hard to for me to deal with as it had that feeling of a damp balaclava over my face. I have in the past risked, and gotten, freezer burn on my nose rather than cover it in climes that dictate a balaclava in the winter. I managed a little more than a couple of hours (by the display on the APAP) each night. I found, in fact, that it was not that I needed to breathe through my nose. Rather it was the nasal mask squeezing, and thus constricting, my nose that caused the problem for me.

The huge thing here was, wonder of wonders, for those two nights I managed even only a couple of hours on the machine, I did not wake with a headache as had become an almost daily occurrence.

Being the nosy engineer that I am, I dug up as much information as I could from the APAP before I returned it and found that it determined my average pressure to be 6.8 cm H2O (more on that in a bit).

I was told would be 2 - 4 weeks until I would be contacted by the DME to get my permanent gear. Now, even though I had put off the sleep study for years, I wanted to get at it. Not waking with a headache was a small miracle. I am fortunate to be able to (mostly) afford to spend some of my own $ so I got my Rx and went shopping. I knew I would want a machine ready to go for travel (I travel both domestically and internationally quite a lot). I also knew that I disliked both masks I had. I bought a travel machine and, based on reviews and what my experience was, a few masks of different types and/or style. I am determined to make this work so my thought was that a) need to find a mask that worked and b) I could see that there might be a night that one mask might just not do it for me even if it was one I liked so have some choices. My principle choices were nasal pillow given that I had found that I could easily breathe through my nose as evidenced by the experience with the Mirage Quattro and that I really did not like anything over my face.

The original order to the DME was for my permanent machine (the Respironics listed in my signature) and for another size small EasyLife nasal mask. WHAT???? This is the same RT that knew that I hated just that very mask. I spoke to him and requested a nasal pillow which would be the Opus 360. In the interim, I had bought myself the minimalist Resmed Swift FX among others (also listed in my signature block) to get started with my travel machine until my permanent one could be picked up.

Where I am now:

The travel machine is the Zzz-PAP. Fixed pressure and did ok with it (but have limited reporting to help me). The permanent machine with C-Flex is great and very comfortable. My thinking (until I started to see little progress) was that I would get really used to this as much as possible with the fancy box and then be just fine for travel. My criteria for travel was small (they're all small but the Zzz-PAP doesn't have the external power brick) and cheap (so that if I bust it traveling I am not out a lot of $). I found initially that I loved the Swift FX but interestingly enough that has cooled. I was surprised that I didn't like the nasal pillow interface on the ComfortLite2 but DID rather like the simple cushion (nasal interface). The Opus 360 is ok-ish and serves as a change when I feel like a nasal pillow mask but the Swift FX wasn't doing it for me. I knew I would likely use the Mirage Quattro when I would inevitably contract a cold or flu from travels and when really severe the Oracle oral mask (both of which have already saved me in just such an occasion). I am, in fact, finding that I like the Mirage Quattro more often than not and certainly a lot more than I thought I ever would. Just for laughs, I tried the EasyLife and found it was tolerable and much better when I changed it out to a medium cushion even thought the sizer says I should be a small. I was pretty sure I would despise the heated humidifier always preferring cool air to sleep in but find that I rather like it.

Finally we come to my question after this rather long dissertation:

Am I doing myself a disservice to have this plethora of masks? Am I making it harder to get used to this by having too much choice and not enough consistency?

I find that I am stuck at around 4 hours (or a bit under) on average on the machine each night. I still wake in the morning having taken the mask off (and not remembering it). That is a bit better lately as I am waking almost right at taking it off as I set the mask alarm to attempt to wake me and put the dang thing back on. Last night I woke holding the mask (Swift FX) but before the machine had shut itself off. I couldn't get back to sleep with the FX but could with the Mirage Quattro (still the last vestiges of the cold stopping sinuses overnight). Regardless of the mask, it still works out to (based on what the software reports) about 2 hrs at a crack with any one mask. It doesn't seem to matter if I have a cold and using a mask suited to blocked sinuses or if health is just spiffy, mask so comfortable as to be almost not noticeable at all, room temp just so, pillows and covers just right, cat not pestering me for attention, neighbor not firing and revving his straight-piped Harley in the wee hours, moon phase at its optimum and planetary alignment could not be better. Two hours (more or less) per mask, it seems, on average. Some nights worse but nothing significantly better except for one outlier a couple of weeks ago where I got 2 out of the first mask and 5 out of the second.

It's not (I don't think) the noise of the system as the machine is quiet to start with but I have also gone to the effort to bore a hole out the back of my nightstand so the machine can sit inside the bottom shelf with the power and tubing dressed neatly out the back and "plumbed" in behind the bed giving significant mass between me and almost all of what could make any noise (aside from just looking nice and neat). I have the hose dressed and held nicely above me and only pretty significant tossing and turning will ever cause a hose tug. Last night, in fact, I was laying there at one point while falling asleep with the Mirage Quattro on so comfortable that, other than being aware of the mask, the breathing was so natural to me that I actually lifted the mask to see if there was actually an air pressure. There was. Still..... two hours and then it was off (in my sleep)

I'd really like this to be the whole night since I know I am not getting the headaches and would like it to be even better with an even more rested feeling than I already enjoy on the CPAP. Am I expecting too much this early in? I'm getting somewhat frustrated and upset that the best laid plans of mice and men aren't seemingly helping me get "into" this very well.

My secondary question is one of pressure: As noted above, the APAP showed and average pressure of 6.8 cm H2O. I was rather surprised to find that I was prescribed a CPAP vs an APAP with a pressure of only 5 cm H2O. Any ideas on why it would be so much lower than the APAP determined? I can understand them supplying a fixed pressure device since they are SO much cheaper but why would the fixed pressure not be 6 or 7 cm H2O and, the biggie, might that be part of where my difficulty is to get a complete night? Should I go back to him and get (from my initial measurements) a pressure range to have an APAP configured and spend yet more $ to go to one of those?

Again, I apologize for the long post but hope that full disclosure will help provide any guidance you can give. As I read here, there are some very astute people that have been at this for a long time and maybe I can shed some light on this or even tell me I just need to suck it up and keep at it.

- mike

[cflame1]

If you can... get the Plus exchanged for a Pro... that will allow you to know (based on the information available) that your pressure is right for you. I'm suggesting a Pro as you said that you liked CPAP more than APAP (you do know that you can make an APAP run as a CPAP don't you?)

At this point you probably own the humidifier... so I'd stick with the PR S1... just change it out so that you can find out what's actually going on with it (or your Dr. can).

[trike-mike]

Thank you. I shall see if I can do that. Basically it is that I like the C-flex machine more than the straight pressure (no exhalation relief) but I was pretty sure that I liked the APAP they sent me home for the "calibration" as it were. I will start building my case to the ins. co, I think, to get changed to an APAP instead of the CPAP.

[Janknitz]

Your sleep lab MO sounds like Kaiser. Is it?

As an engineer, you would be much better served with a data capable APAP. You would be able to see your data and do some problem solving on your own, and I think it would make you much happier to have that control and it would allow you to do the problem solving your engineer brain is geared for. It does sound like the pressure is set too low but without data you are flying blind in a storm.

So I'd suggest taking the machine back and getting a PR System One APAP (since you already bought the humidifier and are doing well on that machine). If you are an HMO member, the HMO may not cover it, especially if they didn't script for it. You may have to pay the difference out of pocket,so prepare to be gouged by the DME (in the end, it MAY be cheaper just to buy what you want online). If you are NOT an HMO member, follow the instructions here on my blog http://maskarrayed.wordpress.com/what-y ... me-part-i/ to find out if you can get any E0601 (HCPC's billing code for ALL CPAP/APAP machines) covered--most likely you can. Then you will have to do battle with the DME to get what you want. Ask here and we can help "arm" you for this battle.

You should also ask your sleep clinic to change the prescription to "mask of patient's choice" and then return the mask that doesn't work for you and try every mask possible to find the best one. Be aware that if you are on Kaiser, they have a limited "formulary" of masks and Crapria is a PITA to work with on masks--they want Kaiser to do all the fitting and patient interaction and they will treat you like dirt.

It's OK to switch up masks every night if you want, as long as you are having no leaks. But there is something to be said for sticking with one mask and getting comfortable with it--provided it's the right mask for you.

[trike-mike]

Janknitz, you hit the nail directly on the head.

It is indeed Kaiser and I often found myself rather bemused by what seemed like a rather cavalier approach to the sleep study. I was sure that the results of the Kaiser "sleep study" that I would get either "no result, you have to suffer through the trauma again" or "boy.... you gonna DIE" based on how horridly that went.

Your point about the data is bang on. I design large scale biometric systems (finger, face, and iris matching and identification) for government and law enforcement. Making mistakes can mean millions of $ lost to the company or to tight government budgets, failed implementations, and often very real social implications. I likes my data.

I bought the Respironics EncoreViewer 2.0 software. I knew I wouldn't have pressure data given that I have a CPAP and not an APAP but with C-flex I (incorrectly) assumed at least I would get data on AHI, etc so I could beat the sluggardly RTs into adjusting the treatment. Nope. I get hours it is used. Helpful somewhat in that I know how much I am actually in treatment and eases my mind that I am getting more than I think I am some nights but none of the rest. Beyond that, just don't get me started on how horrid this s/w is overall. WHY in a aluminum foil hat approach to protecting proprietary data format would they stuff the EXTRA requirement to read data direct from the physical SD card on top of poor s/w. It installs just fine in my Windows 7 VM under parallels on the mac which can see the SD card but as a network filesystem but won't read it since it isn't physical. I had to put it on my Windows netbook so it could see the physical SD card slot built into it. Dumb. But I digress.

I will fire a note at the sleep clinic right now citing what I am finding and see if they will change the Rx to requiring an APAP. Based on what you are telling me here and others are saying I might well do better on that. MAYBE then there can be an exchange at best, or at least only the delta in $ out of pocket for an APAP with the Rx change. That being said, I am already steeling myself for the worst case of just buying the dang thing outright. I really hope it doesn't come to that.

Question: In this message, can you or anyone tell me what I should drive for in an Rx for an APAP in the way of pressure range? Is it important or can it just be set fairly wide and let the algorithm in the APAP decide?

Fortunately when I beat my Rx out of the sleep clinic, it DID in fact say "best fitting nasal or nasal pillow mask". Crapria (what a great name which I heartily agree with). was going to supply PRECISELY the EasyLife Size Small Nasal Mask which they were NOT going to substitute even though I told them I tried it and hated it. Thank heavens for having that Rx in hand as they would then supply me with the Opus 360. I had another higher choice (which I later bought on my own and rather like) but she wouldn't give it to me even though she had it since it was "an older mask". My comment that if it is older yet still in production, maybe... just maybe... it is successful. If it wasn't, it would have gone the way of the dodo. Nit.

Thanks for your words on the masks. It does give me calm to see that I'm not, in fact, being stupid to have all these masks. I am, in fact, finding that I am gravitating to one or two fairly often and may well end up using one in particular almost all the time. I can successfully get any one of the ones I have to fit and stay essentially leak free.

One has to also think, however, that once used to this overall where almost any mask that fits comfortably might do that there is the sense of style and dash...... So, tonight....

• Do I want to be a mighty elephant with my trunk raised triumphantly over my head?
  Do I want to be the evil Lord Vader or brave fire fighter running into a building? (same mask, different mindset)
  Do I wish to go the animal route and don a pig nose?
  Do I want to be Jacques Cousteu diving in the forbidding Atlantic waters?

Only the evening will tell what at the time...

[Julie]

Hi, it also strikes me that you may be at a very low pressure, certainly compared to most here, and I wonder if your pressure was a bit higher (e.g. 8 or 10) if a lot of your trouble wouldn't go away. Can you ask them to please set it higher so you can get a better idea of what's what before you shell out for more masks?

[trike-mike]

Julie, I also was a bit taken aback by that seemingly low pressure. I don't know anyone that I talk to about this with a pressure that low and that very thought has crossed my mind. This is why (and another element Janknitz hit on the head) I have been thinking that maybe an APAP is the way to go but you may well be right... don't need more $; just more pressure. In fact, the one other guy that was at the DME the same time as me to pick up his machine was set at 9 cm H2O.

Do you, or anyone for that matter, think that they started at that low pressure to perhaps ease me into usage (I'm really trying to give them the benefit of the doubt here). I dunno.

As to the masks, I have indeed I think, spent all I will need to on masks. I have enough variety to tell me what I do and don't like and have a couple I am getting to like rather a lot. The more I get input from you and others kind enough to read that rather long initial treatise of mine the more it seems that my secondary question on pressure is actually the really important one.

Any thoughts on how much time under the hose I need to have a good statistical universe for them to make a decision on a pressure change?

[Janknitz]

Crapria (what a great name which I heartily agree with). was going to supply PRECISELY the EasyLife Size Small Nasal Mask which they were NOT going to substitute even though I told them I tried it and hated it.

In essence with Kaiser, Crapria is not your DME, Kaiser is. Crapria considers itself to be merely the "supplier". So the precise mask you get covered by Kaiser originates from your local Kaiser RT and then is transmitted to Crapria via the regional Kaiser DME department. So you need to talk to the local clinic RT to change the mask.

Kaiser does cover data capable CPAP and APAP machines, but you have to "qualify" for the APAP with Kaiser and I don't know the precise criteria, but you can ask (if you are nice to the RT's they will often bend over backwards for you--don't bite the hand that feeds you!). So at the very least you might be able to get a data capable CPAP (the Pro) if you can talk them into it.

Kaiser shouldn't care. I'm guessing that they pay by HCPC's code, so as long as the machine is in their formulary (and I believe the System One Pro is) then Kaiser should not care if you get that instead (Crapria will, no dougt). Because Crapria acts as the supplier ratherthan the DME and--if you don't have Kaiser on Medicare Part C then Kaiser likely bought rather than rented the machine--you are going to have a DEVIL of a time trying to get Crapria to take it back and swap it out for a Pro. It may just not be worth all the ^%$#@ you're going to have to go through.

I am a bit surprised they gave you a non-data capable machine in the first place. The RT’s at Kaiser here are great about looking at your card to help you problem solve and they seem to be happy that patients have data capable machines.

Do you, or anyone for that matter, think that they started at that low pressure to perhaps ease me into usage (I'm really trying to give them the benefit of the doubt here). I dunno.

Nope, not without a data capable machine. How could they tell how you are doing? More likely there is a ramp set so it starts out at a pressure of 4 and when it increases to full pressure the pressure may be waking you or “blowing out” the mask causing your discomfort. You should try shortening or turning off the ramp and trying to get used to the full pressure when awake and alert. That may help you sleep better. It’s really low pressure—my STARTING pressure is 9.

[Stormynights]

I have a collection of masks on hand. Some nights I just can't get to sleep with one so I reach over to the drawer under my machine and dig out another one. Some times I am digging out another one in the middle of the night. I would never have made it with just one. My husband has had one hell of a time finding a mask that works for him. I think the easy part is choosing a machine. You can get all the information you need here to know what you need. A mask has to be tried while sleeping.

[trike-mike]

Janknitz,

I actually already have turned off the ramping and go direct at the base 5 cm H2O. That was one of my first of the few things I could do and did based on the fact that I recalled even in those two working "calibration" days with the APAP liking the higher pressure when it ramped up. I have a couple of masks reputed to work with rather high pressures so I don't think it's a blowout causing the problem. At least that change I made seems to be in concert with your thoughts.....

I am going to fire a message at the RT to see if he can provide any help on this... maybe some way to try a higher pressure or even send home the APAP again to see about a new setting (which would be good since they use Respironics and I'll be able to look at the data myself now).

Stormy,

It seems you and I have taken the same approach and yes, I too OFTEN change to a different mask in the middle of the night. Sometimes, even, the first one I try in the middle of the night doesn't work and I'll go through a couple to get to the one that "works" again and I couldn't agree more with you about trying while sleeping. My first attempt with the first mask was the epitome of that statement. Hell's Bells, one can't even ADJUST it very well if not laying down.

I think you're right, aside from getting the right pressure, the machines blow air. As someone else here put it in another conversation, the mask is where the rubber meets the road and is the most important part of any successful system. Everyone's thoughts here while I was still "lurking", helpful reviews on cpap.com, and what experience I have has meant that none of the masks I have since selected are total dogs and, in fact, each of them are "just right"... sometimes.

[Slartybartfast]

[snip] As someone else here put it in another conversation, the mask is where the rubber meets the road and is the most important part of any successful system.

It's the human/machine interface. Just like any computer O.S., that interface is the most important part of the experience for your comfort and compliance.

However, even the perfect mask won't take the place of having your pressures set at the correct levels. And from the standpoint of your health, THAT is where the rubber meets the road. I think having so many masks available is distracting you from what is most important. And that is getting your therapy pressure set correctly.

Good old Scientific Method: Isolate one variable at a time. Find one mask that you can live with and put all the others in a plastic bag and put that bag in a box up in the rafters in your groj. No, better yet in your neighbor's garage. No, better yet, in the garage of a neighbor you don't even particularly like. And spend a month getting your pressures set right. Only when you've got that dialed in and you're getting consistent results should you start comparing masks. That presumes, though, that you can identify one mask that you can keep on all night.

We both like to look at data and try this and try that until the numbers do what we want them to. Consider spending about $130 and getting a recording pulse oximeter http://www.clinicalguard.com/oximeters- ... -p-89.html and wearing it all night. It will show your oxygen level and give you a good indication what's going on during those episodes when you're pulling your mask off.

Here's an example of the recording:

[Julie]

I'll be interested to hear what happens with your pressure. Going "straight" to 5 from 4 is not a meaningful jump - I would still be starving for air. Do you realize the default #'s for the machine are 4 and 20 and only a very few people ever are set to go to 20 because it would be more likely they'd need a different machine at that point, and no one is set at 4 or 5 because they couldn't get enough air at all that way. 8 - 12 is the range many of us use, though some are ok at 7 or 8 to 11 or 12 (and others higher).

[trike-mike]

Slarty,

As you so correctly put it, in this case, and as this discussion is evolving, it is indeed more one of pressure vs. all the different masks. And I think you also rather succinctly answered the question to the original question. What becomes rather clear reading your response is that, indeed, having all the masks coupled with too much misconception that it is perhaps the most important part of the system IS doing me a disservice. Too much focus on that one (albeit important) element and only, originally, passing question on the pressure distracting me from what is the other crucial factor to success.

Janice,

You are so right. I have looked askance at that seemingly low pressure and also at the specs of my machine and others. 4 - 20. Every time. Again, giving the benefit of the doubt, maybe it does only take that pressure to hold my airway open even though the AHI is relatively high. That said, against my experience with the "calibration APAP", I remember looking at the display to see what pressure it was delivering when awake that felt the best and doing the reading/watching TV thing until nodding off. It was consistently 6 or higher. Those were the times when I really wasn't feeling like I was starving for air.

Next approach for me is to take a big chunk of Slarty's advice. Find a mask and stick with it for the nonce. Given that my travel will subject me to far more colds/flus than typical, I know I'll have sinus issues and my best choice is going to be the full face Quattro which I find I have been gravitating to more and more despite my early dislike of it. If there is ONE mask that I can potentially keep on all night, that is the one as it is also often the one I can put BACK on and sleep in the night. Then, as an engineer needs to do: go back to first principles and solve. Given the limited data available from my machine the pulse oximeter is another excellent thing to do since that gives me one more set of data points I can correlate to where I am yanking the mask.

If nothing else, the array of masks has both given me the choices and variety enough to get definitively used to the treatment. Now, I can for the time being put that bit aside and get the other bit right.

As I sit here thinking about this and reading the monumentally helpful posts here and in other discussions, it strikes me that, while we often get on one element or another, this whole setup really meets the definition of a system where all parts need to work in concert to be really successful. The alliteration to that is all the miserable failed Windows tablets and Apple making such a monumental splash with the iPad. I need to find my iPAP as it were.

I cannot tell you how much it has meant to me that so many were willing to take the time to bore through that big initial post of mine and help me start to drill down to where the real problem lay. Perhaps I might have eventually gotten there on my own but oh, how much better to be able to do it so much quicker and before I get so frustrated I give up.

[trike-mike]

A thought occurs to me with the new line of thinking engendered by this discussion:

Given that I am seeing a consistent pattern of 2 hours per mask, is it possible that I am entering a phase of sleep where relaxation is causing the need for the higher pressure I don't have and causing me to wake up and/or have a suffocating feeling to take the mask off?

Perhaps the clue with be with data from the pulse oximeter when matching against time under the hose.

Thoughts anyone?

[Janknitz]

Yes, definitely possible, or relaxing facial structures could cause mask leaking.

But consider this, too. It's normal to have microarousals during sleep even if you don't have sleep disordered breathing. The thing is that you now have this mask and hose strapped to your face causing some degree of discomfort as you are not used to them yet. So your two hour awakenings could simply be that you come to a lighter stage of sleep and are more easily awakened because you are not yet acclimated to the equipment. It may have NOTHING to do with your pressure needs.

An oximeter can be very useful, but not all arousals and "events" are necessarily going to lead to a significant desaturation. So oximetry data won't tell the whole picture. You need a data capable machine.