I was optimistic and determined

[ladylucy]

...to make CPAP work for me. I was patient. Now I just feel defeated. I cannot find a mask worth its weight in peanuts. I have four masks, one of which the insurance wouldn't pay for. My DME provider was horrible. They didn't tell me much about each mask before asking me which I wanted. They didn't measure my face and they only have ResMed masks. I didn't know how difficult it would be to find something that worked. It was like a guessing game for me. "I'll get that one, I guess.." I wasn't able to try any of them; they didn't have a bed, couch, or even a reclining chair. They would not let me test anything... except the one time I brought in my machine and was feeling very desperate. The mask I tried that day seemed to work until I got home and lay down with it. That was the mask I had to pay for. I was also told that I would have to buy it if I tried it anyway.
I'm new here and new to CPAP. I got my machine at the end of December, so it's been a couple of months. Yes I know some of you tried for much longer to find a mask that worked. It's a struggle. It makes my stomach ill to think of shelling out one or two hundred bucks every time I want to try a different mask, not knowing how many I'll have to try before something works for me. I know you can get return insurance, but that still seems to be high cost. Such a waste of money. In the end, the best mask will have cost me lots of money to find. I simply can't afford to do that. As it is, we have a large deductible on our insurance that we have to satisfy before they'll pay for anything.
Here's what I've tried:
Swift FX for Her Nasal Pillow - I like this best for comfort and fit, but I open my mouth and lose air. My mouth gets desert dry. (This mask used to whistle at the vent until I got a hose cozy.) I tried this with a chin strap, and that didn't do anything. I hardly felt the chin strap, so my mouth opened. I have tried taping my mouth but just lay there wide awake, fearing that I would die if I ever vomited. Also I have a history of serious skin reactions with certain medical tapes, particularly 3M company, but who knows what others? One night I taped my mouth and the next day had very red, raw lips.
ResMed Mirage Liberty (Med/Large) - I was given this without testing and without being told that I was getting that size. They just happen to think most people fit best in this size. It was huge for me. It leaks a lot. I don't sleep.
Quattro full face mask - I blindly chose this when the ResMed Mirage Liberty (Med/Large) did not work. It leaks a lot. My mouth gets dry with it. I don't sleep.
ResMed Mirage Liberty (Small) - I went back and got this small size because I really liked the idea of a hybrid type style. It was tested in the DME and seemed good. I got home, into a supine position, and the leaks and face farts started in the bottom corners. My chin sticks out a little, so I had thought a smaller mouth mask would be able to sit above my chin and I would have no leaks in the bottom corners. It sat on my face better than the Med/Large but I wasn't so lucky with leaks. And... my mouth gets dry with this one.
It seems that every night, with a little hope, I switch and try a different mask of the ones that I have, out of frustration from the night before. I have tried using suggestions I've read online. There's always something that keeps me up or makes me uncomfortable. I have tried cleaning mask and face. I have tried different humidity settings. I keep everything clean by washing out daily. I have tried chin strap. I have tried sleeping on my back and on my side. Etc. etc.
If I could just find a good solution to keep my mouth closed, I would be happy with the Swift FX Pilows. Has anybody found a good solution without mouth taping? I'm getting desperate, and trying so hard not to give up.
Sorry this was so long. Tried to give as much background as possible.
Thanks,
Lucy

[CruzTerri]

Check out http://www.sleepnation.tv they have a program where you can sample different masks and all you pay for is the shipping to/from (like $7 each way). Here's their link for the program: http://www.sleepnation.tv/trialprogram They also have some great videos on different masks.

CPAP.com also has videos. Look at all the masks, and click on videos tab and it will show you how to fit them. Be sure to download the sizing guides to help you determine which size is best for you.

I'm waiting on a ResMed Quattro to try out, after that I want to try out a F&P Forma mask, it fits under the chin and is considered a full face mask.

Good Luck.

[Muse-Inc]

Lady Lucy, it may be that your face and ResMed masks aren't a good fit...literally OK, enough laughs. I'm a huge fan of hybrid-style masks. My face and the Liberty simply don't fit together well...it leaked like a sieve no matter what fixes I tried. I wear the original hybrid-style mask, the RespCare Hybrid Universal. It comes with 3 sizes of oral cushion and 3 sizes of pillows that can be adjusted to 2 heights. it's over the head strap helps stabilize the pillows and its chin flap helps stabilize the mask on the face. You can get it from our sponsor for $119 AND they sell mask insurance that allows you to return it if necessary. Seems like those of us who wear hybrid-style masks can wear either the Hybrid or the Liberty but not both.

[DocWeezy]

What Muse said....

The Hybrid is probably the most adjustable type of FF mask because of the different sized mouth and nose pieces. There are also a lot of ways to hack the mask to fit even better. Ask around here--someone may have a Hybrid they're willing to trade.

Weezy

[Pugsy]

If I could just find a good solution to keep my mouth closed, I would be happy with the Swift FX Pilows. Has anybody found a good solution without mouth taping? I'm getting desperate, and trying so hard not to give up.

Well, I guess my Polygrip idea probably wouldn't be a good one. Yep, I did try it, and I taped and I used all sorts of chin straps home made and DME provided. I was able to tape without any issues. If your skin could tolerate it and your mind would let you get past the "what if..." it really isn't all that scary. The tape dislodges easily. I found this out when I had a power outage while taped. Ooops woke up, no air blowing up nose, open mouth, it was easy, I didn't even feel short of breath.

Some people have just a stubborn and strong mouth opening deal. I was lucky about 2 months of taping and I no longer needed it. Wonder if you tried some other tape? I used the blue painters tape, the delicate one that doesn't pull off paint. Course my skin is not particularly sensitive.

How about the PapCap? Have you look at it? Many members here use it and say it works wonders for stopping the mouth from coming open. It would have been my next choice if the taping didn't work.

http://www.pur-sleep.com/content/?id=44

[ladylucy]

Thanks so much for these quick responses. I'm sure I sound like everyone else at the beginning... It's a crap shoot finding a good mask and I can see that.
I'll check out sleepnation.tv. Sounds like a good option for testing masks.
I will take the suggestion and consider the Hybrid. I think one more try at a different mask (for now) would be worth it.
I just ordered a chin strap too. We'll see how that goes.
I will probably try blue tape too.

I was feeling very down and desperate. I'm usually pretty strong. This doesn't happen to me often in life, so after some deep breaths I was able to pull myself up by the bootstraps and get the optimism going again.
I think part of this down feeling is that I just switched to a low-carb diet. Although I feel better overall, it's tough to make these two major changes at once. I'm debating on going back to carbs until I can get this cpap thing figured out. It's all just taking too much out of me.
Thanks!

[Janknitz]

Most chinstraps don't work because they push the jaw back, but I've seen people have good results with the Pap Cap's chin strap and the Ruby Chin Strap.

One idea I haven't seen around here lately but it works for some people is to buy an inexpensive boil and bite mouthgaurd from a sporting goods store and use that with a good chinstrap.

This IS hard and you had a lousy DME. When you are due for insurance to pay for a new mask, try to find a new DME that has a liberal mask return policy, will let you try the masks in your sleeping position, and a knowledgeable RT that can really offer useful suggestions and fitting tips.

And kudos for hanging in there despite all the frustration!

[rested gal]

I sure sympathize with you, Lucy! My first six months, I tried several FF masks and couldn't sleep worth a darn with them. For the next six years (thanks to taping my mouth) I've had great, comfortable sleep using nasal pillows masks -- the Breeze for about a year, then the Headrest the last five years or more.

But all last week I had to use FF masks -- too much nasal congestion from a cold -- had to mouth breathe for six nights in a row. MISERABLE sleep with dry mouth, mask leaks, big chunky mask pressing the side of my face...brought back memories of eveything I hated about using FF masks at the beginning.

When the cold was gone and I was finally able to tape my mouth and put on the Headrest nasal pillows that I love, it was like heaven to snuggle the side of my face down against the pillow and sleep comfortably again.

So, I do understand the frustration people have trying to sleep with a mask that causes discomfort or that keeps springing leaks. I knew there was light at the end of the tunnel since I had long ago found a comfortable mask -- so I was just "enduring" until the cold had passed. It would have been 100 times more frustrating if I had had to think, "Is this the way it's going to have to be from now on???!"

One idea I haven't seen around here lately but it works for some people is to buy an inexpensive boil and bite mouthgaurd from a sporting goods store and use that with a good chinstrap.

"Boil and bite" reminds me... check out this thread, Lucy, for a way to make the tongue maintain an airtight seal inside the mouth. Worked for me, although after a dog treated it as a chew toy, I didn't bother to make another -- tape suits me fine:

This link is to a long discussion about frequenseeker's "DIY" (Do It Yourself) mouthguard:

Topic started by frequenseeker Dec 01 2004 subject: mouth leak solution, cheap DIY oral appliance
http://www.talkaboutsleep.com/message-b ... php?t=4750

Picture of snork1's creation:
viewtopic.php?t=3265

Pictures of a one piece design by freelans:
http://www.talkaboutsleep.com/message-b ... hp?t=10676

And about tape with sensitive skin -- birdshell's Milk of Magnesia tip might enable you to try tape again.
viewtopic.php?p=345797#p345797

birdshell wrote:
"Another tip, which is probably buried in the links: smear some milk of magnesia on your skin, allow it to dry, and then tape over it. This old RN's trick helps to protect the skin while maintaining enough tack to do the job. Skim milk reportedly works well, too."

[ladylucy]

Thanks to everyone for the help. I'll take note of everything, follow some suggestions, and keep trying. Last night I slept without the machine at all, and boy did I get a great night's sleep! I just wish it could be that way every night. Back to the CPAP tonight.

[SleepfulInSanJose]

I started PAP back in August with a ResMed S9 and nasal pillows. Initially, things were great, but over the last few months I've noticed (or I should say my wife noticed!) that my mouth was opening during sleep. I started using polident strips on my lips to keep the mouth closed and this has worked well for me, and is pretty comfortable.

[ladylucy]

Thanks to everyone's encouragement to keep trying, I've figured out that the Chin-Up Strips seem to work. The last two nights, I have used them and slept with the machine until about 6 am! I haven't done that in the two months that I've been on CPAP. I'm so happy to have some sort of success , because so far I'd had none at all. Before this, I would figure out when 4 hours from bedtime would be, struggle with the mask until that time, and then take it all off and go to sleep. Only problem is that the Chin-Up Strip pulled off a little of my skin this morning. Owee! I don't want to have small wounds all over my face. Maybe I'll try milk of magnesia.

@pugsy and sleepful - Perhaps I'll try Polident. Maybe it'll be better (less painful) than the Chin-Up Strip.

I'll keep the F&P Forma mask and the Hybrid in mind, in case I go back to needing that type. Also will keep the PapCap and boil-and-bite mouthguard in mind.

Again. Thanks to everyone who gave me advice. I'm sure I'll keep coming back to this thread and trying out most of the suggestions.

[Janknitz]

Congratulations on your persistence--glad to see you're having some success.

I'm feeling for your poor skin!

[ladylucy]

Congratulations on your persistence--glad to see you're having some success.

I'm feeling for your poor skin!

Thanks! I did well with the Chin-Up Strips last night. But will be trying milk of magnesia, or Polygrip tonight.