Advice before follow-up appointment next week

Hello. I've been on APAP for just shy of a month and a half now, and have my follow-up appointment with the sleep doctor next week. I wanted to post my thoughts here and see if there is any advice or anything specific I should bring up while I'm in there.

According to my at-home sleep study, over the course of 380 minutes, I experienced 124 events. 41 obstructive (5.4/hr,) 10 central (1.3/hr,) 5 mixed (0.7/hr,) and 68 hypopneas (8.9/hr) for an AHI of 16.3. When in supine position, AHI was 29.0. Lowest SpO2 was 78%, with 51 minutes spent under 90%.

You can take a look at some of the screenshots from Sleepyhead here; http://imgur.com/a/XszkK. Included is my screenshot from last night, which is pretty good/typical for me. There is an image from one of the worst nights. I also included the overview and statistics screens. If you'd like to see a specific day I didn't include, please let me know and I'll add it to the album.

Now on to my concerns. First, my doc mentioned after the sleep study that she was concerned about the centrals and needing a bi-level machine. We tried to get my insurance to cover an in-lab titration, but they would not cover it without having a history of heart or lung problems. They said they'd approve an in-lab study if 6 weeks of therapy on the APAP machine didn't resolve my issues. After a week or two of therapy, I discussed my results with Palerider on IRC. He supported my theory that I should bump my minimum from 5 to 7 or maybe even 8 in order to try to resolve the hypopneas that still seem to persist. I called my doctors' office and spoke with the nurse and explained my theory. She had the doctor review my data (I have the cellular modem on my PR machine) and called me back. She said she wanted me to continue as-is since my AHI is usually under 5 and discuss it with her at my appointment. On a more humorous (maybe sad) note with regard to that call, the nurse said they've never had any one call them to suggest their own changes, and she was kind of taken aback that someone is actually taking that much interest in their own treatment.

From my reading and my conversation with Palerider I understand that the 5-15 pressure range is usually a "catch-all" range that is used, then adjusted rather quickly to a more customized level. My theory is that the doctor may be wanting to use the slightly high (but still far better than untreated) AHI as justification for an in-lab titration in order to get me to the machine she thinks I should be on, rather than risking insurance saying it is already "good enough" and not allowing further labwork or a more expensive machine. I don't think she'd answer this question if I were to ask her, and I wouldn't blame her for that. She did move my wife to a more specific range, so I do tend to think leaving it at this range is deliberate, not out of lack of understanding or lazyness.

My newbie interpretation of the data is telling me that I should bump my minimum pressure to 7 or maybe 8 to combat the hypopneas and the ocasional OAs that I still have. I doesn't appear to me that the CAs are increased with higher pressure, so I don't see a reason to limit the upper range lower than 15 at this time. Does this seem like a good thing to ask for when I go in to see what her thought is on it? Based on what is seen so far, does it look like I should still push for an in-lab study to see if a bi-level or even ASV machine is the right choice for me due to the centrals? I don't really have a basis to go on as far as "how do you feel." My wife reports loud snoring and noticed apnea events, and my dentist has noticed bruxing for several years, which is why I went in for a sleep study to begin with. I've never felt what I consider to be overly tired, no regular headaches, or any of the other "typical" apnea symptoms. On that line I'm kind of hoping after a few months on the proper therapy that I'll have this "moment of clarity" where everything just feels better than I ever knew possible. I have no comfort issues with the therapy itself, and I realize that even if I don't "notice" any improvement it is still immensely helpful to my overall health, so I have no plans to quit even if I never experience any positive reaction.

Anyway, I know there are a lot of people here that have years of experience with their own apnea, and some very knowledgeable RTs that have clinical experience as well. To be clear I'm "not looking for medical advice" here, only seeking input as to whether my theories are reflected in reality or if I'm way off base, and what I should bring up with my doctor in order make the most of my appointment.

Thank you everyone for the help!

Overall your AHI has reduced significantly since around March 28 with just a couple of night where it increased a bit.
If most of your reports are now like last night's report then I seen zero need for ASV for centrals and not really any need for bilevel or anything else to be done if you are sleeping well and feeling decently....at least based on what last night's report shows.

Not much in snoring seems to be going on now but your wife may be hearing some low level snoring maybe if you happen to be on your back or something. If that's the case just a little more minimum pressure would probably fix the snores but they are far from horrible at least on paper.

If it were me and I was sleeping well...I don't know that I would change a thing but a small increase in that minimum would likely reduce the already small number of snores and wouldn't hurt anything.
If you look at your overall pressures...they have also sort of leveled out...stabilized.
Looking pretty darn good to me and I don't see the need to do anything any differently and certainly no need for ASV because the number of centrals now no where near to what you would need to justify ASV and/or bilevel therapy of any sort.

I agree with Pugsy about your current settings. However, I wouldn't change anything at all because:
1) There's that insurance question and getting the numbers slightly better won't help any case your doctor may be making for you.
2) You asked about changes and they said no. Proceding to change now may make your relationship with your doctor more difficult than it needs to be. And, the wait until you see her again isn't too long and nothing is going on that will cause any harm.
3) At some point in the future you may be able to get to the point with your doctor that she trusts what you are proposing and managing your treatment can be a more collaborative effort.

I've gotten to the point with my sleep doctor that when she proposed a new med and didn't have a hard reason for the particular dose, she said it will be just fine for me to titrate my own dosage. That level of trust with your doctor comes when she knows that you understand exactly what is going on and how to stay out of trouble. Most patients don't and that makes the docs leery.

Are you using A-Flex? If so, setting?

The snoring my wife was talking about was prior to treatment, one of the factors that sent me in to the sleep specialist to begin with. She has no complaints now that I'm on treatment.

I guess maybe I'm trying to compare myself with my wife too. While I have seen a significant improvements "on paper," it isn't nearly what she has seen. Her pre-treatment AHI wasn't quite as high as mine was, but it was all obstructive, and her AHI is now in the 0.5 to 0.7 range. A 1.0 AHI is a "bad" night for her now. She was also experiencing significant symptoms like headaches, fatigue, pain, etc. APAP therapy has been a life-changing experience for her. While I know better, it is hard to not "chase the numbers" since I don't have any other baseline to compare to for myself other than to aim for the lowest AHI I can.

Thank you for the input Pugsy. I really appreciate it.

JDS74, thank you for your input as well. I'm not planning on changing anything on my own. My appointment is next week, and I wanted to get input on my interpretation of the data so that I'm more informed when I do talk to the doctor. The last thing I want to do is jeopardize the relationship with the doctor as I have no reason to doubt her expertise at this point and would much rather work collaboratively as you said. I'm more interested in learning about the conditions and the treatments than just making changes and hoping for the best. I wanted to make the suggestion along with the reasoning I reached those conclusion and see what she says. If I'm right, that means I understand things correctly. If not, then it is an opportunity for me to learn what is correct and have somewhat of a base level of knowledge to build upon. I'm in this for the long haul, so the more I understand the better off I'll be.

I know exactly what you mean with regard to building a level of trust with your care providers. We have children that have some health issues that involve seeing some specialists on a regular basis. It takes a long time to build up the trust that they can tell us like it is without sugar coating it. They can use the full medical terminology with us and that isn't going to lead us to Dr. Google and freaking out about the extremely rare worst case scenarios. It also takes time for them to understand that when we bring something up to them that we haven't taken a symptom and googled for a condition that matches. Talk to us like we're another doctor. If we don't understand a term we'll ask, not just nod our head.

Again thank you for the advice, it is very helpful.

Deep Sleep wrote:Are you using A-Flex? If so, setting?

Yes, I'm using A-Flex at level 3. When I first got the machine I went into the A-Flex demo mode and played with the various levels. That is the level that felt the most comfortable to me so I stuck with it. I also played a bit with the humidification level and have settled on a level of 3 there as well. I'd actually prefer a bit cooler air for "comfort" level as I've never cared for warm humid air in my face (I highly dislike saunas for the same reason) but with it turned down my nose seems to get get a bit congested, and if I have any minor congestion when I go to bed, within a few minutes it clears right up. That said I have not tried to adjust the temperature and humidity levels separately in the config menu yet, only adjusting with the main knob when in therapy mode.

Honestly the mask and machine is so comfortable I'll forget it is on. When I do wake up occasionally I'll feel my face to see if I have my mask on, and even concentrate to hear the machine to see if it is on too. Even on the rare occasion when I've awakened while the pressure was 9+ it still doesn't "feel" like it is on. I really don't think I could be happier with the comfort and lack of invasiveness I feel.

Sorry...I misunderstood the snoring comment...I thought wife was still hearing some snoring now.
In that case I don't see any urgent need to change anything at all.

Subjectively...AHI is just a guideline and doesn't guarantee that we will feel any marked difference...some people do and some don't.
Last night's AHI was well within acceptable limits...would you feel better if it was lower? That's an unknown and you might and you might not. I think that it's harder to "see/feel" significant improvements when there never was any perceived huge problem to start with.
A nice low AHI doesn't guarantee anything except maybe a chance to pat yourself on the back when you get one.
People do get wrapped up in the "numbers" because we tend to evaluate our progress by "numbers"...lab results and all that. With OSA it isn't all about the numbers though. Early on in my therapy I had one of those "miracles" that we yearn for (and I haven't seen them often) where I woke up feeling amazing and had an awesome day and when I finally got around to checking my data (I used to always make a point of checking it in the evening so that I did create a self fulfilling prophecy) I just knew I must have had a 0.0 AHI and to my surprise it was 10.4 I think it was. Go figure that one.
I have since learned that how I feel during the day correlates more to how many hours of sleep I got and how many wake ups I experienced much more than it correlates to AHI.
If I get at least 7 1/2 hours of decent sleep (for me that's 3 to 5 wake ups that are barely remembered) I feel decent and have no need to nap during the afternoon but anything less than that and I will want to nap and my butt drags a bit. Still a lot better than pre cpap though.

Once you have visited with your doctor and got any questions answered...you can then decide if you want to do any experimentation on your own to see if you can improve on how you feel.
But remember...the cpap machine only fixes problems related to sleep apnea and not everything that bothers us is related to sleep apnea so we really can't expect the machine to fix those things.
Like my arthritis...my main reason for the wake ups during the night....but at least I don't wake up having to pee every hour on the hour or wake up with some killer headaches (those symptoms I had were directly related to sleep apnea and the machine fixed those).

At some point you might want to consider fixed pressure...I figure I might as well suggest it before someone else does . For some people the varying pressures of apap mode cause sleep quality issues and they simply sleep better/feel better with minimal to none varying pressures. You may or may not be one of those people.

You also may find that at some time in the future if you have to go without cpap a night for some reason (I forgot my long hose when traveling) and you will realize just how bad you can feel without cpap even though you may not realize all the improvements because they come on so gradually.

But I understand wanting to wait till you see the doctor and get all that out of the way before doing any experiments (should you even want to) and there's no urgent rush to change anything at this time. You have lots of time to try something new if that is what you want to do.

Oh....are you using the heated hose? If you are then the knob only controls the temperature of the air and you have to go into the clinical setup menu area to adjust humidity...no other way if the hose is the heated hose.
If you like cooler air the heated hose would be something you can do and not sacrifice humidity. That's what I do...warmer in winter and cooler in summer and never vary the humidity delivered so my nose stays happy.
If your hose isn't the heated hose then that knob's main feature is humidity delivery and not so much air temp.

Bearing in mind that I have no experience with CPAP, I'd think perhaps reducing Flex a notch rather than bumping the doc's minimum pressure might be something you could try.

Changing the Flex setting on Respironics machines doesn't always make a big difference in the amount of reduction of pressure during exhale as people tend to think it will. That setting of 3 doesn't give you 3 cm reduction during exhale.
The amount of reduction is flow based (how forceful you breathe) and the very most it can deliver at the setting of 3 is 2 cm..that's it.
Respironics Flex exhale relief doesn't work like ResMed's EPR exhale relief works.
http://aflex.respironics.com/

I used to use AFlex of 2 with my PR S1 machine...I tried turning it off one night...bad mistake. Wasn't particularly comfortable breathing and slept horribly and things went to hell in general and AHI was worse and not better. It was so bad I was unwilling to try it a second night. My body was used to AFlex and liked it...didn't like change at all.

I know some people do see a reduction in AHI when that slight reduction during exhale that comes with Flex relief but not everyone does and even then remember that AHI is just a guideline and even a nice perfect 0.0 doesn't guarantee anything other than you get a gold star and a pat on the back.

Pugsy wrote: Respironics Flex exhale relief doesn't work like ResMed's EPR exhale relief works.
http://aflex.respironics.com/

That's good to know, Pugsy. Thanks for the link!

Pugsy,

I probably could have worded it more clearly that the snoring is pre-treatment. I'll take credit for the confusion there!

I had one evening a few days into treatment where I took my mask off in the middle of the night, and barely had my 4 hours total. That day I felt horribly tired and run down, like I didn't even sleep at all. Then a couple of days ago I did it again, (I think it was Sunday morning) where I took it off, then had to wear it for a while after waking up just to get my 4 hours compliance in. I felt fine all day, no drowsiness or any other issues. I figure it'll be several months before I "notice" any differences, and even if I don't I'll just keep with it. You're absolutely right however that the amount of sleep makes a bit of difference. That is one area of improvement I could focus on and see how that helps. I average about 6.5 hours per night right now, so I should try to improve that by an hour and a half or so. So much for being good on 4 hours like I used to be able to do...

For now my concern is/was if I'm on the proper machine for the best long-term benefit. You've eased my mind quite a bit on that, and I'll be sure to report back with that the doc says next week. From there I'll decide if it is worth experimenting a bit. Like you said, I may decide it isn't worth the effort to chase any available minor improvements down.

I'll check into the independent temp/humidity settings and see how that helps. The DME rep that gave me the machine explained that the main knob adjusted the humidity and heat at the same time, so if it is set to 4 it will be hotter and wetter than if it was set at 2. I must have missed the proper operation of that feature in the manual, so thank you for pointing that key difference out to me. Today I learned! It is unfortunate that DMEs seem so irresponsible. I've used my DME in the past for beverage gas (kegorator) and welding gas/supplies, as well as various medical items for my kids. I'm learning how much they price-gouge for supplies even though they seem to be competitive on all of the non-xPAP items I've ever purchased, and now it sounds like their rep doesn't even fully understand the equipment either.

You mentioned your "long hose." Is there a longer heated hose available? Normally this hose is fine, but it would have been handy a few weeks back while staying a week in the hotel to have a 10 foot or so long hose.

Deep Sleep: That is a good suggestion and I'll definitely consider it down the line. At first I figured it was irrelevant since it is exhale pressure only, but I guess that pressure drop could be enough to cause an obstruction that the higher pressure can't compensate for quickly enough. That may be something to look at before giving Pugsy's suggestion of constant pressure a try.

Thanks for that more detailed A-Flex information too!

When I talk about "long" hose I am referring to the 6 ft hose as opposed to the "short" hose which is part of pretty much all nasal pillow masks (and that's all I use) and they are usually a little less than 24 inches.

There are longer hoses available...8 ft or 10 ft options but they are regular hoses and none are heated. No manufacturer makes a heated hose longer than 6 ft.

If your hose has a black end on the coupling where it attaches to the humidifier then it is a heated hose.
If it is white/gray on both ends then it is not a heated hose.

Now if you have a heated hose and desire more length without giving up the heated hose you can add a 2 ft hose at the end of the long hose and you won't lose a lot of heat depending on how cool your bedroom is.

So you have some options in hose length especially if you don't need the heated hose function and still have an option of the 2 ft extension (you will need a little adapter but those are cheap) if you want to keep the heated hose function.
For me it's not just air temp but I like the consistency of humidity delivery that the heated hoses offer. Without the heated hose some of the potential consistency is lost and humidity delivery becomes potentially more variable and dependent on ambient humidity more. I learned a long time ago that my nasal mucosa don't like change ...especially change to the drier....and if my nose is unhappy I am pretty miserable since I need to use my nose for ultimate breathing comfort. I use maximum humidity year round and let the machine sort it out...sometimes I will use a full chamber of water and sometimes I can't tell any difference in water consumption at all.
Like today..I haven't checked the water levels but I already know that not much if any was used because we had light rain almost all night and I had the windows open in the house so I know the household ambient humidity was quite high.
The end result is as long as my nose is happy then I don't care how much water is used or not used.

If you do desire a longer hose and adding 2 foot beyond the heated hose causes rain out in the hose or mask...there are ways to reduce that annoyance if the need arises. No big deal...we dealt with it for years before we had heated hoses

cpap.com has all sorts of hose lengths available as well as the couplings to connect 2 hoses together.
As far as I know 10 ft is the longest hose available and won't impact therapy pressure...above that I don't know how much it might impact therapy but there are people using 2 of the 6 ft hoses attached together without any apparent issues. Just be sure that the long hose diameters match the hose diameter setting in the machine's clinical setup.

Even if your humidifier is setup for a heated hose and you are using one now there is nothing stopping you from using a non heated hose if you wish. They will still fit just fine on the swivel thing on the humidifier lid. You don't have to use a heated hose all the time if you don't want to.

Using the full face mask, my familiarity with other styles is pretty limited. It makes sense that the pillow masks would need a short hose as there isn't much room for the snap-in elbow like mine uses. I'd like to give the pillow masks a try after I get more used to everything to begin with.

A longer hose usually isn't a big deal. It would have been nice in the hotel when we were both sleeping in the same bed, which was against the wall, so both of our machines were on the table to one side of the bed. We made it work, but an extra couple of feet would have been nice.