Sanity Check

I'm a newbie to CPAPTalk and CPAP, which I began using a bit over one month ago. I'm even more tired and sleepy than when I began CPAP so I thought it would be good to run some basic sanity checks.

I've had fatigue for years and have several chronic diseases and take several medications which could cause fatigue. I've long suspected sleep apnea but my physician ignored my complaints until I experienced insomnia, as a result of high-dose Prednisone therapy. At that point he ordered a sleep study, which showed obstructive apnea but mainly central apnea. My AHI was 42. My mean O2 sat was 91% but my lowest O2 sat was 77%. I was prescribed CPAP at a pressure of 17 and EPR of 3. using a ResMed S9 Elite and Mirage Quattro.

Thanks to sheer desperation, I have been fully compliant since day one. I have major problems with mask leaks and suppose I need a different mask, perhaps a different sort of mask. I have been able to resolve the leaks only by over-tightening the straps. Otherwise, the least degree of head movement causes musical leaks. Probably because of leak noises or general discomfort, I generally manage to sleep for only a few hours at a time and awaken to find that the Sahara desert has extended its reach to my mouth. I've tried using a chin strap, which did resolve the dryness, but considerably added to discomfort since I'm already using a full-face mask. The machine thinks I'm doing fine, reporting AHIs of less than 1.

Obviously, I need to request my DME provider to check my mask fit and, most probably, provide a different mask. What else can I do to obtain some benefit from all this cost and effort? Since I'm more tired and sleepy than ever, it's very hard to stick with the program.

Welcome to the forum and so sorry you are having a tough time.

First thing to concentrate on....find a mask that is comfortable and doesn't leak and doesn't require this statement

NeedZZZ wrote: able to resolve the leaks only by over-tightening the straps. Otherwise, the least degree of head movement causes musical leaks. Probably because of leak noises or general discomfort, I generally manage to sleep for only a few hours at a time

Until you can get some decent sleep that isn't fragmented and adequate hours of sleep...you are going to be fighting an uphill battle on an icy slope where slick soled shoes. It can't get better if you aren't sleeping well.

Mask issues must me conquered first so that any issues possibly related to the mask itself as being a factor in poor sleep are eliminated. Otherwise you have no idea what or why you are fighting.

Second...evaluate any meds you are taking so that you are educated as to any possible side effects that are unwanted like daytime fatigue, drowsiness and /or possible effects on sleep itself like insomnia or effects on sleep architecture itself.

Can't really evaluate AHI thoroughly until leaks are conquered if the leaks are large.
Leaks, even if they are low level, if they cause sleep disruptions are unwanted...so they need to be fixed.

Hang in there... Some people take a little more time than others to get the hang of this therapy.

Finding a comfortable mask is a big piece of the puzzle. Once you find one that is comfortable you then need to "train" yourself to be comfortable while wearing it. It is a bit of a dance. You don't have the freedom of movement that you do without a mask, but with a little practice the "two" of you can make wonderful music together.

Tight straps usually end up causing more discomfort in the long run. The idea is to have them snug to loose.

It is very difficult to "fight the battle" on many fronts. You are tired to start with, and in an effort to get some rest are ending up being more tired from your efforts to sleep with the mask and machine. The goal is to achieve restful and restoring sleep.

One thing you may want to try is to set a weekend aside from other responsibilities. Get up in the morning with the idea that as soon as you feel tired, you will mask back up and catch a few minutes of sleep. You will be up and down all day, but at the end of the day you may feel refreshed. The downside to this is that you may go into the evening fully refreshed and not be able to sleep that night. I think it is worth the risk but you will have to decide.

Once you achieve reasonably restful sleep there may still be some other issues that you need to take care of. One thing at a time. Do your best to get some good sleep and then you will have a better perspective on everything else.

Please post your equipment and welcome to the forum! To me is appears you "settled" on a mask from the git-go that was close, but not quite "your" mask. It seems you avoided the "mask search" that most of us go thru. Very few are given a mask from the git-go (love that term) that was comfortable and doesn't leak. You should get with your DME and explain you are going to experience the mask search onslaught and work an arrangement in which you can return a mask within 30 days for exchange. There are multitudes of full face masks on the market, and if you think that some form of full face mask is perfect for you, then there is one out there for you, you just have to find it. After getting used to a mask, you should be so comfortable, that you really don't know you have it on most of the time.

Hope this is sound advise to you.

Sheriff

I like to add some impressions on the Mirage Quattro. I wore the mask for the first six months and during the 7th, I got a trial DeVilbiss. I like how the Mirage Quattro lets air come out near the forehead. It's out of the way so to speak. On my other mask, the DeVilbiss FF silicone, the air was coming out through the openings near the lower area by my nose and mouth (trying to say this right). This definitely interfered with me pulling the covers up around my neck and lower face area. Being able to pull the covers up around the neck area and lower face added to my comfort.

I'm OK, my mother had me tested! Jim

NeedZZZ wrote:I've had fatigue for years and have several chronic diseases and take several medications which could cause fatigue. I've long suspected sleep apnea but my physician ignored my complaints until I experienced insomnia, as a result of high-dose Prednisone therapy. At that point he ordered a sleep study, which showed obstructive apnea but mainly central apnea. My AHI was 42. My mean O2 sat was 91% but my lowest O2 sat was 77%. I was prescribed CPAP at a pressure of 17 and EPR of 3. using a ResMed S9 Elite...

I'm just curious why, if you have central sleep apnea, you are on a straight CPAP at that high pressure. Could it be your machine is making you worse instead of better? And just a note here that OSA is thought to be a risk factor for glaucoma. So is being on Prednisone. Hope your eyes are being closely followed by an eye doctor, just in case. My eye doc said if I'd missed the warning signs I would have been ireversibly totally blind within a year.

Pugsy wrote:Mask issues must me conquered first so that any issues possibly related to the mask itself as being a factor in poor sleep are eliminated. Otherwise you have no idea what or why you are fighting.

Second...evaluate any meds you are taking so that you are educated as to any possible side effects that are unwanted like daytime fatigue, drowsiness and /or possible effects on sleep itself like insomnia or effects on sleep architecture itself.

What's with a DME provider who fails to explain the issue of mask fit? This seems to me to be quite close to malpractice. It's certainly inconsiderate.

I take over a dozen oral meds. They, and their side effects, are just a given. There's really no room to move on this front.

HoseCrusher wrote:Tight straps usually end up causing more discomfort in the long run. The idea is to have them snug to loose.

Understood, of course. But, without over-tightening, no amount of fiddling succeeded in controlling musical leaks that interrupt sleep. I quickly learned that mask cleaning is part of the equation. Two types of wipes I bought don't do the job in comparison to warm water and suds. But even a squeaky clean mask squawked too much. I fully understand why they named the mask "Mirage."

Sheriff Buford wrote:Please post your equipment and welcome to the forum! . . . There are multitudes of full face masks on the market, and if you think that some form of full face mask is perfect for you, then there is one out there for you, you just have to find it.

Sorry about the equipment information. Apparently I failed to click "Submit." Fixed now.

I don't have a clue whether I want/need a full-face mask or some other sort. That's what I was ordered to wear. I can see I need to discuss with my DME provider who it is who gives orders about what.

kteague wrote:I'm just curious why, if you have central sleep apnea, you are on a straight CPAP at that high pressure. Could it be your machine is making you worse instead of better? And just a note here that OSA is thought to be a risk factor for glaucoma. So is being on Prednisone. Hope your eyes are being closely followed by an eye doctor, just in case. My eye doc said if I'd missed the warning signs I would have been ireversibly totally blind within a year.

I do have an EPR of 3. But I'm on CPAP at 17 because that's as high as the titration could go, or so it seems to me. One of the reasons for my posting is concern that, apart from the usual CPAP start-up problems, the prescribed therapy may be inappropriate. Of course, I understand that medical advice is not the purpose of a forum such as this. But I assume that others have wrestled with similar concerns.

Fortunately, I'm now off Prednisone, after 11 miserable months. Whether or not I suffered permanent eye damage is something I suppose I'll learn at my next annual check-up. Although I see six or seven medical specialists regularly, the phrases "medical team" and "closely followed" don't seem congruent with the sort of medical care I've managed to obtain. Please pardon any apparent cynicism. I feel somewhat entitled to vent.

Unfortunately finding a DME willing and able to help sort through mask issues can be really difficult. If your insurance works with different DMEs that are in your area perhaps a simple talk with another DME might lend you a more "helpful" DME.
I know that part is difficult.

Regarding meds...education only so that you know about the potential affects and maybe help you accept part of the limitations. I didn't mean stop them but sometimes knowing about them helps and perhaps discussions with your doctor might alter time of dosage or amount of dosage so that effects might be reduced.

You can ask for special hints for your mask. You can rest assured that pretty much every complaint about a mask has been made by someone here and someone may have some hints to help make it work...maybe. Sometimes we just have to say enough is enough and try a different mask. I don't believe in spending weeks and weeks in trying to make something work when there are alternatives available. One can always go back to a mask if they find out the alternatives are a bigger problem.

Full face masks simple present more challenges due to the surface area that needs to be sealed and if you need higher pressures it creates additional issues.
Have you looked at mask liners?
At higher pressures they offer comfort and additional help in keeping a seal so that little leaks aren't so annoying.

Pugsy wrote:Unfortunately finding a DME willing and able to help sort through mask issues can be really difficult. If your insurance works with different DMEs that are in your area perhaps a simple talk with another DME might lend you a more "helpful" DME.
I know that part is difficult.

Regarding meds...education only so that you know about the potential affects and maybe help you accept part of the limitations. I didn't mean stop them but sometimes knowing about them helps and perhaps discussions with your doctor might alter time of dosage or amount of dosage so that effects might be reduced.

You can ask for special hints for your mask. You can rest assured that pretty much every complaint about a mask has been made by someone here and someone may have some hints to help make it work...maybe. Sometimes we just have to say enough is enough and try a different mask. I don't believe in spending weeks and weeks in trying to make something work when there are alternatives available. One can always go back to a mask if they find out the alternatives are a bigger problem.

Full face masks simple present more challenges due to the surface area that needs to be sealed and if you need higher pressures it creates additional issues.
Have you looked at mask liners?
At higher pressures they offer comfort and additional help in keeping a seal so that little leaks aren't so annoying.

Due to cost pressure, I have HMO medical. As far as I know, I have no choice concerning my DME provider. Due diligence before my initial, and so far only, meeting with the provider suggested they have an average satisfaction rating of about 1 on a scale of 1 to 5, with 5 being the best. 'Nuff said, I suppose.

I tried a mask liner. It helped with comfort. At least my nose bridge wasn't rubbed raw. And the seal was better. But I didn't make real progress until I ignored instructions about not messing with the top straps of the headgear. As I wrote, over-tightening finally got the squawks under control. I might even get used to it. But I know that's not how the mask should be used. So, I strongly suspect that a different mask is the right answer. But, what do I know? My own guess is that a pressure of 17 is just so high that mask fit and other variables become critical. Obviously, my DME provider knew, or should have known, all that. But I feel as though I got what folks used to call the "bum's rush." I plan to call the provider on Monday. And I plan to complain to my physician, whom I will see on April 1 on an unrelated matter.

P.S. Your advice concerning meds is sound. But I've already pretty much memorized the full prescribing information for each medication. I take so many meds that my list of meds and their dosing is always in flux. And, more than half the drugs on the list could cause fatigue or altered sleep. Yes, the right thing to do is to systematically alter them one at a time. But there are so many drugs and so many prescribing physicians, so that simply can't and won't happen. Maybe more to the point, I can think off the top of my head of three chronic diseases I have which could cause fatigue, apart from sleep apnea. I have to just do the best I can with the CPAP factors and hope for the best.

P.P.S. I'm by no means wealthy. But my problem is serious enough that I'd gladly pay, say, $500 for several masks among which I might find one that would work better. But, as far as I can tell, most masks are sold only by prescription. And, I'm at least a bit wary of changing mask types without responsible medical advice. I think I am a mouth breather and that may be why I was given a full-face mask. OTOH I read on one of my sleep study reports that I should be tried on a nasal mask. My wild guess is that a nasal pillow and a chin strap might be a better solution for me. Am I at all likely to be right? Would I be risking life and limb to simply buy one, reconfigure my CPAP machine as required, and try it out?

Pressure of 17 with your mask type usually produces some leakage unfortunately. Even with EPR that's a lot of air to keep contained. The ResMed masks employ a bubble design that uses the pressure in the circuit to help make the seal. In addition to inhibiting this feature, overtightening, is probably resulting in pressure sores or contact sensativity with the mask. The trick to that mask, if it's the latest Quattro FX, is to follow the instructions about putting the mask on by starting contact at your nose and then swinging it down from there. The fact that you've been on your equipment for a month though, at this point, a download would be most useful. Scanning the posts I notice there is an issue with the DME. Hopefully they will allow you to try another style of mask if you need to.

I like the title of the post "Sanity Check". You'll get there I'm sure, the fact that you are on this site indicates you haven't given up. After trying what has been posted so far I'm curious as to how you are doing now.

SleepWellCPAP wrote:The fact that you've been on your equipment for a month though, at this point, a download would be most useful. Scanning the posts I notice there is an issue with the DME. Hopefully they will allow you to try another style of mask if you need to.

The DME did provide a first-class CPAP unit and mask, AFAIK. And the unit is equipped with a cellular modem that enables the provider to obtain daily readouts of history and status. But I get the impression that the ball is entirely in my court. If anyone's actually reading those readouts it would surprise me.

I think I understand how the mask is designed to work. And I think I'm using it properly. Certainly I've accessed the full user guide and all the resources provided or readily obtainable. That's why I've come to the conclusion that the mask isn't right. I can't reasonably be expected to live with a mask that gives a 50-dB toot every time I tilt or rotate my head, can I? Part of the sanity check is trying to ensure that my expectations are reasonable in the light of the experience of others.

NeedZZZ:

I had the same mask as you when I began CPAPing in February. It constantly made loud noises when I fidgeted with it or as I retired for the night. After some experimenting with different masks, I settled on the Quattro FX and have been well-pleased. I went from disastrous and fractionated nights to those in which I now go to bed at 10:30 p.m., pee at 3 (cute rhyme, eh?), and then am back asleep until 7:30 a.m.

My spouse is deeeeeeeelighted with her newly-found silence during the night.

Good luck to you. Be patient but not afraid to ask questions. The techs, doctors, and equipment providers are there for YOU.

DEXSUZ wrote:I had the same mask as you when I began CPAPing in February. It constantly made loud noises when I fidgeted with it or as I retired for the night. After some experimenting with different masks, I settled on the Quattro FX and have been well-pleased.

Unless yours is the comment on Amazon, someone else reports the same experience as you.

How does the FX differ from the Mirage? Looking at pictures it seems to be a bit wider. And, it looks as though there are two models: one with cushion ($151) and one without ($88). Can you comment on that?

I see that masks without headgear are apparently non-prescription items. I'll buy an FX in a heartbeat if there's a one in ten chance that doing so would solve my problem. The FX seems sufficiently similar to the Mirage that I can't imagine there'd be substantial short-run medical risk in switching out one for the other.

P.S. It seems more likely that the cushion and frame are related components, intended to be used together.

You can use any mask you want to use. Don't let the RX only sticker on it scare you off.
You have nothing to lose and a whole lot to gain by trying something like the Swift FX.
Unless you have chronic severe nasal congestion that can't be cleared up so you can't breathe through your nose there no reason not to at least try it.
Buy one with return insurance from cpap.com if you want to. That way if you hate it then you are only out the cost of the insurance.
The mask setting choice on your machine is only used for calculating the leak rate. That's it. Pressure doesn't change or anything like that. So you aren't messing with the pressures at all.
Oh...that 17 pressure you are using and nasal pillows....don't let that scare you either. There's a lot of people using pressures higher than yours and using any number of the nasal pillow masks.