So WHY does this work?

[ShelaghDB]

Speaking of compliance sooner, since the answer to my original post was answered perfectly, if i may make a suggestion, there should be an easier way of getting masks to fit, etc as I can see how frustrating it can be to go back and forth to an office to replace masks until you find one that fits.

OR perhaps there needs to be better training? The person that gave me the machine and the mask was a pencil pusher. He didn't explain anything.
On my second sleep study, my hubby and I were the only 2 there that night, to one nurse. She was far more knowledgeable than anyone yet I had spoken to ( outside of these forums )

She personally picked out a FF mask that she felt would work best for me and told me why she thought so and it did for 4 hours but then it began to have great leakage and no matter what we did, the leakage wouldn't stop so she then tried others, all the while telling me why she didn't think this one or that one would work and she was right, they all leaked far worse.

Its one thing for clients who happen to sleep better on their sleep studies than ever before, and therefore know instantly that this is the answer for them, than for those of us that don't notice any change for a while. For those of us that don't, its the constant going back to the office to try out yet another mask I see that could stop people from taking it seriously.

I am trying to get started and its frustrating not being able to throw myself into it as should be done and I don't know how long its going to take until I do find the right mask.
I thought nasal pillows and a chin strap might be the best way but now I have just read one of the threads here and someone posted that it was very hard to find nasal pillows that don't hurt the nose.
Reading that took a bit of the wind out of my sails for suddenly I realized it might not be as easy as getting the pillows to e the answer so I am left wondering if I just stick with what i have but i lose too much air.

There has to be a better way?

I will go through it, as frustrating as it ends up being, but I know my husband and if he is made to go back and forth to try different ones he will lose his patience. Therefore I reiterate that there has to be a better way of ensuring people are fitted properly with the right masks from the beginning, although of course i don't have the answer.........


Or maybe they could just send you home with 6 different ones at a time..............but thats probably not going to happen so not sure what it is but I bet they lose a lot of clients for this reason......

A girlfriend of mine that has had 3 brain tumours and 2 other things wrong that has gone up to about 350+ pounds due to the drugs, etc gave up.
She wasn't that mobile to begin with and was unable to keep going to the office. After the third one with leakage, I think she gave up and i hate to see that happen to anyone.....

[mjbearit]

Hi! I've been away for awhile now, but just came back to the board and thought I would take a whack with the mask question. I find that during the night if I perspire, I start leaking like crazy and once that happens, until I just fix it, it will leak until I get up in the morning! I have a container of mask wipes next to the bed. When this happens, I wake just enough to grab a wipe, wipe off the seal area of the mask, wipe my face off (some people may have an issue with that but I use it on the mask, the mask goes on my face and I'm still alive and kicking!) put the mask back on and back to sleep! I use the Swift FX and I find on very rare occasion I will have an issue with it rubbing a raw spot inside my nose. I have a tube of what I laughingly call "Nipple Cream" that I use on my nose for a few days until the raw spot heals. "Nipple Cream" is actually for nursing mothers and does wonders for chapped nipples (I understand). It is a lanolin ointment that won't hurt the mask and heals up any issues in your nose really fast. Now I tried the Swift FX Nano, and while I really liked the light weight and simplicity of it, my nose is just shaped wrong. I could never get a seal. I have used the Swift FX for a long time now and I know exactly what I need so I don't even go to an office anymore. I simply have them mail a new one to me when I need one. The less I see of doctors the happier I am! Good luck with your new machine(s) and no question is stupid! This is a lifelong learning experience!

[trish6hundred]

Hi ShelaghDB,
There is just one thing I will say about your post.
Don't be afraid to try pillows on just one poster who had trouble with them, because you might find that you won't have the same difficulty they had, everybody is different. Of course, I'm not trying to say that they didn't have trouble, but as I said, everyone is different.
If you should have trouble with pillows, well, at least you can say you tried. I hope this helps and that it made sense.
Best of luck to you and your husband with your CPAP therapy.

[Peter_C]

As to the thought that there has to be a better way...

We all wish there was a better way~! Speaking as someone that started down this path some 15+ years ago - there were very few choices back then, no forums, no data capable machines... the answer to leaks was simply to raise the pressure of the machine, and to pick a mask that hopefully didn't leak into the eyes.

I can say overall it is much better today than it was 'yesterday', but mask issues is still a big problem.

[ShelaghDB]

Interesting. Thanks for the replies. Good to know i am not the only one that finds this part of it, getting the right mask to fit frustrating!.

I will continue on until I get it right but i won't give up on the thought that there has to be a better way.....its just coming up with that better way thats the challenge ;-)

[skram]

.
I thought nasal pillows and a chin strap might be the best way but now I have just read one of the threads here and someone posted that it was very hard to find nasal pillows that don't hurt the nose.
Reading that took a bit of the wind out of my sails for suddenly I realized it might not be as easy as getting the pillows to e the answer so I am left wondering if I just stick with what i have but i lose too much air.

I have tried 2. Pilairo Q and AirFit P10.
The Pilairo does give some irritation but it goes away quickly (less than an hour) with no lasting issue. Used it for a couple weeks straight.
I haven't had any irritation from the P10. Although I have only been using it a few days now.

Hopefully this will remain consistent with continued use. You may want to try those ones out.

[GrammaBear]

I recently switched from Swift Fx for Her to Airfit P10 for her. I guess I was lucky at the onset of my cpap therapy in that I tried nasal pillows and they seemed to work for me. One reason I found nasal pillow my personal best choice for a mask is that I am claustrophobic and the idea of a full face mask was upsetting. In the future if it becomes necessary for me to use a full face mask, I will face that problem when it happens.

In the beginning of cpap therapy it almost seems like "learning a new language". I was discouraged because I thought I had failed in my effort to erase my snoring by losing weight. My husband kept telling me "you snore loudly". I thought he was just giving me a hard time. But I'm glad he did keep saying it because now, some 3+ years later after diagnosis, I would not trade my cpap machine for anything. I don't know a lot about how it works - - I am just glad it does.

Don't give up on finding the right mask for you. Is it annoying to make frequent trips to have someone try to help you with the mask? Yes, in my opinion it was. But in the end, it is all very much worth it.

[PaytonA]

ShelaghDB,

I will give you a couple of suggestions based on my experience with masks which is not as extensive as some. First, I assume that all of the leakage problems are from the mask seals and possibly around the nose. The FF mask will not solve the mouth breathing problem it will only make it so that it is not a leak out of the system. Based on what I have read on this board either the nasal mask or the nasal pillows provide the best probability of no mask leaks with a little edge to the nasal mask.

I started with a nasal mask when I first started therapy. After a few days I complained to my DME (equipment provider) that my mouth was so dry that it hurt. They switched me to a FF mask. I tried for 4-6 months to get the mask to quit leaking. In retrospect, I believe the leakage that I experienced with the FF mask was due to movement of my mouth dislodging the seal. I went back to the nasal mask and further was told by the respiratory therapist that the dry mouth was due to my blood pressure meds and that was that. The dry mouth did get somewhat better with time and I went along fat , dumb, and happy that my treatment was going well for over a year. In fact, I did feel better with the CPAP than prior to it. My problem was that it was always better but sometimes it seemed perfect and sometimes not as much.

In beginning to look into making my results more predictable I found the Apnea Board and I have been rattling around in here ever since. I learned how to read my machine's data and some of what it means. I found out my leakage rate still sucks and I have been on the trail of a solution.

What I have taken the long way around trying to tell you is the following. I believe that it will be easiest to find a nasal mask that does not leak (or possibly nasal pillows) and this may make your husband happy and even if there is mouth leakage the therapy can produce positive results. On the other hand, if you wish to solve the dry mouth problem you are probably going to need the chin strap no matter what type of mask you choose.

I am still trying to solve my mouth leakage (I am not a mouth breather) problems but it is taking a while due to the medical systems in place.

Best of luck and be persistent and assertive (grrrrr).

PaytonA

[robysue]

if i may make a suggestion, there should be an easier way of getting masks to fit, etc as I can see how frustrating it can be to go back and forth to an office to replace masks until you find one that fits.

OR perhaps there needs to be better training? The person that gave me the machine and the mask was a pencil pusher. He didn't explain anything.
...
There has to be a better way?

You'd think that wouldn't you?

One major part of the problem is that most DMEs (the ones who sell us the machines and masks) try to fit you with a mask while you are sitting up (or partially reclined) and without any air at all blowing through the mask. A proper mask fitting needs to be with you lying down using your bed pillow in your favorite sleeping position with your particular CPAP blowing air at full pressure. The way a mask fits while sitting up with no air being blown in has little or nothing to do with how it fits when you're lying down and your PAP machine is blowing at full pressure.

DME folks often "fit" masks very inaccurately because they've had no experience wearing the mask and (all too often) their training consists of reading (or not reading) the user guides for the masks. It's not uncommon for a DME person to tell a CPAP newbie to just keep tightening the straps in an effort to end leaks. Problem is that some masks need looser straps in order for the air cushion to properly inflate.

Another (huge) part of the problem is that many, if not most, of the people connected to our therapy have never, ever put a mask on their face, let alone tried to sleep with the machine blowing air down their airway. And so they make a lot of assumptions: This mask seems to trigger few complaints, so they assume it will work for everybody. That mask triggered a few very pointed and very verbal complaints along with the paperwork required to process a "returned mask" for credit from the manufacturer, and so they assume it won't work for anybody. Likewise, they assume that every new PAPer needs to have both ON and set to its highest setting---which works for many, but not all new PAPers. Or they'll insist that congestion problems can only be fixed by increasing the humidity setting, when in reality, excessive humidity can be just as likely to cause congestion as too little humidity. Same thing with heated hoses: Some noses like really warm humid air coming through the mask, other noses dislike sleeping in what feels like a swamp.

Should it be this way? Of course not. But the fact remains, there's an awful lot that experienced PAPers have learned the hard way, but sleep medicine tends to ignore because there's no "hard evidence" to show things like APAPs, heated humidifiers, or full data machines help the average new PAPer become a happy PAPer with full compliance. (As to why "hard evidence" is lacking for these things, my take is we're all individuals and what I need to make this crazy therapy work may just be the opposite of what you need.)

As for your particular mask problems, you write:

On my second sleep study, my hubby and I were the only 2 there that night, to one nurse. She was far more knowledgeable than anyone yet I had spoken to ( outside of these forums )

She personally picked out a FF mask that she felt would work best for me and told me why she thought so and it did for 4 hours but then it began to have great leakage and no matter what we did, the leakage wouldn't stop so she then tried others, all the while telling me why she didn't think this one or that one would work and she was right, they all leaked far worse.

The question that needs to be addressed is why did the mask start leaking after 4 hours?

It could be that your face got sweaty. It could be that by the time you were four hours into the study, the pressure was high enough to cause problems with leaks. It could be that by 4 hours into the study, your facial muscles has relaxed to the point that the original mask seal was no longer effective, although in that case, waking up should have firmed the facial muscles back up.

Its one thing for clients who happen to sleep better on their sleep studies than ever before, and therefore know instantly that this is the answer for them, than for those of us that don't notice any change for a while. For those of us that don't, its the constant going back to the office to try out yet another mask I see that could stop people from taking it seriously.

It's actually pretty rare for patients to have really high quality sleep on their titration study. And mask problems at the titration study are also pretty common.

As for the aggravation of needing multiple trips back to the DME to try yet another mask, it is, alas, par for the course. But multiple trips to tweak prescribed treatment, however, are not confined to PAP: Consider the fact that many drugs wind up triggering multiple trips to the doctor or drugstore in order to figure out the proper dosing of a needed medication that comes with significant side affects.

I am trying to get started and its frustrating not being able to throw myself into it as should be done and I don't know how long its going to take until I do find the right mask.
I thought nasal pillows and a chin strap might be the best way but now I have just read one of the threads here and someone posted that it was very hard to find nasal pillows that don't hurt the nose.
Reading that took a bit of the wind out of my sails for suddenly I realized it might not be as easy as getting the pillows to e the answer so I am left wondering if I just stick with what i have but i lose too much air.

Two comments:

1) You may find that if you "throw yourself into PAPing" that you'll be able to make a promising mask work through the use of mask liners, changes in your facial care routine, and carefully refitting the mask while lying on YOUR bed with your machine running at full pressure. Some of the problem of mask fitting is that too many DMEs have you try the mask on while sitting up and not using full pressure.

2) Take everyone's opinion about any particular mask or mask type with a very large grain of salt. Individual noses and faces react to particular masks and mask styles in very different ways. The perfect mask for me might very well be the torture device from hell for you. Likewise, the mask that I find can be described as a torture device might be the perfect mask for you. It all depends.

Take for example nasal pillows: Yes, some people do find that they have sore nostrils with them. For a few people, the sore nostrils is a real deal breaker. For others, slathering the nostrils with some Lanisoh lanolin "nipple" cream reduces the soreness to the point where the mask is no longer literally painful to wear. For some people, the sore nostrils are relieved by simply losing the headgear---there are DMEs out there who incorrectly tell their patients that the nasal pillows cones need to be shoved up into the nose rather than resting gently against the nostrils.

Some people find that one particular model of nasal pillows are extremely uncomfortable, perhaps because the angle of the cones or the shape of the cones doesn't fit their face very well, but a different nasal pillows mask (even by the same manufacturer) fits their nose to a tee.

Will nasal pillows work for you? No-one can answer that question unless you try some. Will my favorite mask (the Swift FX for Her nasal pillows) mask work for you? Maybe, maybe not. There are a lot of us who appreciate the minimality of this mask and the pillows don't hurt our nose and we don't have big or annoying leaks. But there are also plenty of folks who tried it and could not make it work for any number of reasons. And some of those people have found other nasal pillows masks very comfortable and very much effective for their particular faces and noses.

My advice on masks? Since you already know you're in the unlucky majority of PAPers who take some real time to find a mask that works, you need to start analyzing both the positive and negative aspects of every mask you try. If you like some particular feature of Mask A, but can't make it work after a week or so of trying, you can look for other masks with the same desirable feature whose design is less likely to cause the same problem you ran into with Mask A.

So some questions:

Exactly which mask are you using?

When the mask starts leaking, where are those leaks happening? Up near the nose and eyes? Or down around the mouth?

What have you done to try to fix the leaks? Readjusted the head gear? Played with the forehead support (if there is one)? Tried a mask liner? Tried simply pulling the mask away from your face while the machine is running and gently letting it settle back down on your face?

Have you considered changing your facial care routine? Perhaps the soap or lotion or cream you put on your face before is part of the culprit.

[JWR]

Wow ! Ya what Robysue said . That was a Great Post. I think you covered it when you said the DME fits you standing up and no pressure . Ya gotta be laying down and at therapy pressure to really check a new mask out .