I am DONE With Stupid CPAP! :(

[john_dozer]

I wish there was a nuclear option for masks. A place you go for a custom mask after trying 3-4 stock masks. Seems that would be best for everyone involved.

[greenvelvetdragon]

I wish there was a nuclear option for masks. A place you go for a custom mask after trying 3-4 stock masks. Seems that would be best for everyone involved.

apparently there is one, i saw a thread posted about a week or so ago about it, however its in Brisbane Australia. Its actually in the same state i live but still not a very good option as its about 3 days away via road travel. great idea, but the expense for most people to get there would be far to great......

Cheers
GVD

[DoriC]

I think I read somewhere here that in UK and Australia they do make custom made masks. That would alleviate so much pain and frustration to so many and would probably save some money in the long run. That leaves the USA out.

[dsm]

I wish there was a nuclear option for masks. A place you go for a custom mask after trying 3-4 stock masks. Seems that would be best for everyone involved.

apparently there is one, i saw a thread posted about a week or so ago about it, however its in Brisbane Australia. Its actually in the same state i live but still not a very good option as its about 3 days away via road travel. great idea, but the expense for most people to get there would be far to great......

Cheers
GVD

There is a retired Dr south of Sydney (near Berry) who moulds mask to peoples faces but we have heard reports that they can be uncomfortable for some people due to excessive sweating.

Seems no matter what we try there is a down side to it.

DSM

[roster]

...... Although you are not likely to die in your sleep (it does happen, however, just ask Reggae White about that) .......

I asked him. He did not answer.

[Severeena]

Not all masks are for everyone. You do not have to use the same kind of mask that has your machine name.

I personally use the Hans Rudolph Full Face Mask. This mask comes in 5 sizes; Large, Medium, Small, Extra Small and Petite.

Hans Rudolph also has the nasal mask but this one is made for your nose and face. You have digital pictures taken and they are sent to the Hans Rudolph Corp and they make the mask especially for you.

Please do not give up on your machine.

[goose]

Hey Thomas....There's not a lot I can add to what everyone else has said.....

Masks leak. It's a fact of xPAP. Even my best go to mask leaks at times (every night!!!).
I used the headrest mask for a long time before I figured out that the XL pillows is what fit right. Leaks almost stopped all together, but it still did leak....
I've been using the Activa mask lately with that "active cell technology"....it's a piece of work and I reallllllly like it, but it leaks also. I'm going to ask for a different size to see if that helps.
My first mask was a ComfortGel Medium size. It was issued by the DME and I was told that was the size that would fit me. It leaked like a sieve, but after monkeying around with it for a few months I got it to work fairly well. Still leaked more than I liked, but it was working. Then I tried a size small -- works like a champ. Still leaks, but a LOT less.

Someone suggested the Macks silicone ear plugs. It's a great suggestion and I used them with the headrest until I got the XL pillows. It was the only way to keep it from leaking for an entire night. They seal pretty well.....

I think all of us understand your frustration. We've all been there at one point or other. Don't, for a minute, think you are alone or unique in having problems with these gawdawful things we call masks!!!!
We overcame our issues, and you can too.....just keep at it. If your DME allows you to try masks, do it!!!! If it doesn't work in a couple weeks, return it and get a different mask. If you need a FF type mask, I've heard tons of good things about the Quattro and the Ultra Mirage Full Face.....If you don't mouth breathe, I can whole heartedly recommend the Activa.
In ANY mask, Size Matters. If you find you have to crank it down tight to make it seal it's the wrong size. If it leaks badly constantly despite your best efforts, chances are it's the wrong size.

But don't give up. Even though it's a PIA, keep trying until you get a replacement. Any treatment you get is better than no treatment at all!!!! You can do it.....
Take care
cheers
goose

[rested gal]

I think I read somewhere here that in UK and Australia they do make custom made masks. That would alleviate so much pain and frustration to so many and would probably save some money in the long run.

That might be one of those ideas that look good on paper but might not work all that well in practice, especially for people who change sleep position very often. The muscles, fat, skin in the face can shift considerably depending on sleep position and position of the head, and whether mouth is open, closed.

I'm not sure that a mask made from a mould of the face made while the person was being still in one position would work any better for a toss and turn sleeper than off the shelf masks do (or don't!) Perhaps if a person sleeps in that one position all night.... but I doubt that many do.

I'd have my same doubts about the efficacy of a mask made from digital photos of the face with a person's head in one position, like the Hans Rudolph company promotes.

[jda1000]

Very understandable, Thomas - it's a rare week when I don't feel like taking a bat to my CPAP. I think a certain level of anger is probably common to all CPAPer's, at least in the beginning of therapy (at least, I know I'm counting on it wearing off). It would take a saint to be told life forever after would require wearing a mask to bed, and NOT get a bit worked up.

I find the anger easy to deal with: I skip a couple nights in a row.

In short order, I'm too tired to swing the bat to smash my equipment, can't remember what I was looking for when I get to the garage to find the bat, am so irritable everything bugs me so much CPAP gets lost in the shuffle, and within about 48 hours am pretty much ready to give it another go.

All jokes aside, it's become important to me to remember the consequences - cardiac issues, loss of mental acuity, the usual ying-yang chicken-egg misery of OSA and obesity, and diabetes - will be much worse when they come. I do not think I will ever become one of those who profess love for their CPAP, but am assuming a heart attack is even more irritating....

Am curious whether you've informed your DME you have leakage issues - and how they responded. If they responded.

[Babette]

If they want me to wear this damn thing every night, that's fine. I really don't have a problem with it.

But until they give me a mask that doesn't leak, I ain't turning that machine back on. That means it'll be at least Monday. I am done trying all the tricks y'all are telling me. I am done reaching up every 30 seconds to adjust the mask. I am done being frustrated by this damn liberty that doesn't work. I don't need this frustration. If I had a mask that didn't leak, I'd have no problem with this. But since the mask does leak, I am just wasting my breath. And I mean that in the literal sense.

It's going back the case. NOW.

I know exactly how you feel. Took me 8 masks in 6 weeks before I could find one I could sleep with all night every night.

Happy to help you find a better mask. I'll PM you the details of the Nasal Aire II Test Drive.

Good luck!!!!
Barbara

[tattooyu]

I said the same thing about week 3. It is frustrating. I have a nasal pillows mask and apparently am a huge mouth breather (although I breathe through my nose when I'm awake).

For me, a chinstrap was all that was necessary--well a LOT of patience too--and now I'm sleeping very well. You will get there, but it may require a different mask as others have said. Once you start getting consistent sleep, I think you'll change your tune. I hope so anyway. You've overcome a lot of adversity in your life. I would think this is much easier than what you have gone through in the past.

You can do it man. I believe you can... we all do... now you just have to convince yourself of the same.

I thought I had read somewhere that CPAP technology is really in its infancy. The first CPAP machine was invented in 1981, so there has only been thirty some-odd years of the technology. Not very much. I'm excited to see what the future holds. I envision a time where there may be "action-at-a-distance" technology (different from wireless) where maybe the hoses would no longer be needed. That's what my imagination wants, and I shall make it so!

Keep up the good fight!

[howkim]

I hear ya', Tom. My last pressure adjustment caused me to leak air from my mouth with the nasal mask I was using, so I'm working on a FF. It's not fun!!

[ThomasMcKean]

Am curious whether you've informed your DME you have leakage issues - and how they responded. If they responded.

I am on my way to do that right now. Gonna try a comfortgel. Too honkin' BIG for my taste, but it didn't leak in the sleep study....So tonight I try again.

[ThomasMcKean]

I have a new mask. Big huge honkin' comfortgel large full face. Tonight I turn the machine back on and hope for the best.

[Karla1958]

So how do you supposed to know which mask works for you? During my sleep study they only had one full face mask and that is the one they gave me to try. It leaked and fell apart during the sleep study but they wrote on my prescription that THAT mask is the one I need to get. So the DME got me that one. I didn't have a chance to try any other ones on. This Respironics Comfort Gel Full Face mask does not fit my head or face. No matter how loose or tight I tighten the headgear, my head just isn't shaped right for the headgear. The headgear slides up off my head or down my neck. I seem to have a flat head in the back. (Insert joke here!) So, now I have a mask that does not fit and hasn't for the first full week of having the thing. I had to buy this thing. Can I take it back and say it doesn't fit? Or do I just give up on this thing. I tried a sample of that Remzzz (t-shirt material mask liner) and that doesn't help. I tried the nose position at all different ways and still nothing keeps it on and in the same place without leaks for more than 5 minutes. My nose is sore from where the top hits me and even if I leave the top unfastened, I still get the red sore spot on my nose. It's crazy! And I'm thinking there has got to be something else out there.
I've searched the internet and found a Hans Rudolph V2 full face mask that has a headgear adjustable where I need it and a chin rest and cheek position fasteners which is where I get most of my leaks and no forehead thing... But I can't afford to buy another mask and probably won't be able to ever afford it.
I'm going nuts here with this mask. Anyone want to buy a Comfort Gel full face medium used for only a few hours! Just kidding, I guess. I only paid $125 for it. I have to get another or I'm going to give up and smash it against the wall some night.

Now my cats wake me up when there is an air leak. I guess the noise bothers them and their sleep. So I'm getting LESS sleep than without it. This is just nuts!

Karla