I'm Done. Cannot do this.

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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bwexler
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Re: I'm Done. Cannot do this.

Post by bwexler » Thu Jul 24, 2014 6:37 pm

There is no mask in this world that fits my face Ive tried them all. I am using the one that works the best out of all I have tried. I use mask liners to help with leaks.

I have the same problem sort of.

I have tried several masks that were great, like all of the different SleepWeaver masks, until they weren't. They work great, then my nose gets stuffy or my pressure changes or something shiny and new comes along, and I have to change.
I hate full face masks, except when I can't breathe through my nose. I don't like hard plastic masks, except when my high pressures cause constant leaks. I like the smallest nearly non existent mask I can find, so when I sleep on my side or stomach and burry my face in the pillow, the mask doesn't get in the way and just works.

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SleepyToo2
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Re: I'm Done. Cannot do this.

Post by SleepyToo2 » Thu Jul 24, 2014 6:42 pm

Zeecat, as you see from the number and variety of replies here, many of us have had/are having problems that are similar to yours - in some cases worse! It is perfectly normal (IMHO) to be frustrated at times. Yes, you may need to change DMEs. Yes, you may need to buy a few masks to try - if your DME won't play that game, call your insurance company and find another (better) DME that they will work with. If that fails, ask if you can buy online and get reimbursed. If that also fails, go to the sponsors of this web site (just remove the talk from the url), and buy the one of your choice with return insurance. Sometimes the insurance is free, sometimes it is not. That will help financially with finding the right one. Give each mask a fair trial, over several nights - unless it really is a total disaster. Make a few mask liners from t-shirts (although I have yet to work out how you could use a liner with nasal pillows!), and or use Lansinoh, or silicone mask sealer (the stuff scuba divers use) to help get better seals. The liners and the Lansinoh can help protect your skin while you are getting used to the mask. There are other "devices" you can make/buy to help you get used to this darn thing that we have to put up with. Post back with any questions, and do let us know how you get on!

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ShelaghDB
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Re: I'm Done. Cannot do this.

Post by ShelaghDB » Thu Jul 24, 2014 6:50 pm

Learn as much as you can, work with you Dr and DME.

Although I didn't care for my DME for several reasons, that seem to be fairly common in the industry, the ONE RIGHT thing she did was prescribe me a mask from the beginning that was perfect for me and my face. That being the Quattro Air FF mask.

Unfortunately in my case, not on this forum but a different sleep apnea one, someone said that FF masks should not be given to Mouth Breathers and I took that to heart. I figured she knew what she was talking about and after using it only 3-4 nights without success I followed the posters advice and used nasal mask for 2 full months. It was in this forum that a poster explained that what i had been told was wrong and why I did need the FF mask after all. ( I also thought i was keeping my mouth closed with the nasal mask and wasn't as it turned out)

The point being, sometimes they do actually get it right and in my case, being new and having a few issues to overcome before i could get this to work, I should have listened to the DME but i was overwhelmed with too much too quickly. Dry Mouth, Mouth Breathing, Stuffed Up Nose and everything else that comes to it.

What my DME said, and the reason she chose the Quattro Air was because i have an angular face. I do. I have a heart shaped one and high cheekbones. In my 20s in the music industry, I had a very androgynous look and was photographed about 5x for out cities Fashion magazine but in 3 of the 5 mention was again made of the similarities to Bowies androgynous style. (Not Today)

The DME was in my opinion, smart enough to know her business and recognized that I did in deed have an angular face. I suspect this Quattro Air is likely not given out to anyone with a moon shaped face or a round or perhaps even a square one. IF anyone here has such a shaped face and finds that the QUATTRO AIR works perfectly for them, then I would be interested in hearing if so. Either my DME was on to something for I hear so many stories of how people have to try mask after mask and a dozen more before hitting the right one yet mine was perfect from the beginning. So, I repeat, either she knows her stuff or, she was just giving me a stroke with all the angular stuff...........but if she is correct, than than that would suggest that most masks work best on one shaped face or another and perhaps the DMEs should be fully aware of which ones they do work best with.

Try asking your DME if she can recommend one for your particular shaped face.

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archangle
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Re: I'm Done. Cannot do this.

Post by archangle » Thu Jul 24, 2014 6:51 pm

If you do give up, best of luck to you.

I encourage you to keep trying. You might find the magic trick here. There are so many things that have worked for one person or another. Too bad there's not some one whose job it is to help you along with stuff like this. Uhhh... wait a minute....

One suggestion is to try everything. Humidity is a great example. Humidity "should" help. It makes sense that it would. Some people find it works the opposite way.

Sometimes you'll have something that seems like you should increase pressure, but decreasing pressure actually helps.

Here's one thing to try for aerophagia (gas). https://www.youtube.com/watch?v=-65JWNBttnE Sometimes, lying on one side or the other (I forget which one) may help.

Does the Icon have some form of pressure relief like Flex or EPR? If so, that may help with aerophagia. If not, some people find a bilevel machine will help with aerophagia.

What are your pressure settings? You might have to try changing your pressure range on your machine yourself.

Things to try for stuffy nose. Neilmed SinusRinse. It sounds sort of disgusting, but works surprisingly well for some people once you get over the initial reaction. While you do NOT want to use most OTC (over the counter) nasal sprays for more than a few days, try some of the steroidal nasal sprays. Nasacort is now OTC, and you should be able to get some of the other ones. This sounds strange, but sometimes lying on your side and pressing the side of your face on the pillow or something make your nose clear up. It's hard to describe, but if it works for you, it's amazing when it happens. Unfortunately, it tends to only clear up one nostril at a time.

There is an Oracle oral mask you wear in your mouth. Many people find it is uncomfortable, partly because it tends to try out your mouth and throat, and it's uncomfortable to not breathe through your nose. It tends not to leak, but you do have to learn to not let air leak out of your nose. That sounds strange, but many people find they learn to do it.

Some masks have to be very loose and need to "inflate" to fit your face. Someone compared it to a hovercraft. Sometimes it helps to run hot tap water over the cushion on the mask before putting it on to soften it up.


Sometimes cleaning your face really well helps leaks. Sometimes it makes it worse.

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englandsf
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Re: I'm Done. Cannot do this.

Post by englandsf » Thu Jul 24, 2014 7:13 pm

Took me a solid four weeks and six masks to find my best choice. Luckily got 2 samples, one on insurance and paid for 3 personally.

Remember a month or two in CPAP set up time is nothing...

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Petrodon
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Re: I'm Done. Cannot do this.

Post by Petrodon » Thu Jul 24, 2014 8:05 pm

I feel every bit of your pain. I am struggling with many of the same issues, including have a crap DME. But you have taken one huge step, you have admitted that you need help, I have found the community here on cpaptalk.com to be the support system I need. If you have specific issues there are tons of folks right here that have those same problems and can help you find way to deal with them. Good luck.

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Re: I'm Done. Cannot do this.

Post by surf_rower » Thu Jul 24, 2014 8:56 pm

Bypass the DME and just buy a Tap Pap mask and try it. It is is soooo much better (for me) than the other two masks I tried. Even so, it has taken me almost a year to feel like I am more rested, even though I have been generally sleeping much better almost every night. I actually *like* my machine and am 100% compliant. I never in a million years thought I could use a nasal pillow type mask, was sure I was a mouth breather, but immediately adapted. Do not listen to any doc who says a mouth breather can't adapt. A friend who was suffering with FF mask, strap marks, etc., for many years tried one of my old nasal pillow masks, and she too adapted and likes it much better, would never go back to FF.
For hose management on wall, I just use duct tape plus a stretchy scrunchy. Thanks to the person on this forum who mentioned the scrunchy - get a slippery one for a large ponytail... works great, the hose can slide back and forth a bit. Good luck!
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49er
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Re: I'm Done. Cannot do this.

Post by 49er » Fri Jul 25, 2014 12:29 am

surf_rower wrote:Bypass the DME and just buy a Tap Pap mask and try it. It is is soooo much better (for me) than the other two masks I tried. Even so, it has taken me almost a year to feel like I am more rested, even though I have been generally sleeping much better almost every night. I actually *like* my machine and am 100% compliant. I never in a million years thought I could use a nasal pillow type mask, was sure I was a mouth breather, but immediately adapted. Do not listen to any doc who says a mouth breather can't adapt. A friend who was suffering with FF mask, strap marks, etc., for many years tried one of my old nasal pillow masks, and she too adapted and likes it much better, would never go back to FF.
For hose management on wall, I just use duct tape plus a stretchy scrunchy. Thanks to the person on this forum who mentioned the scrunchy - get a slippery one for a large ponytail... works great, the hose can slide back and forth a bit. Good luck!
Agree with the advice about the masks. I was sure I was a mouth breather and went through what I call FF mask h-ll for months wresting with them. Finally, found I did alot better with the elan cloth mask in my profile. Unfortunately, sleep got a whole lot worse perhaps because of the struggles although obviously, one single factor can never be blamed. But my point is with masks, keep an open mind on trying anything even if you think it may not work as you will never know if that might be your ideal mask.

49er

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englandsf
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Re: I'm Done. Cannot do this.

Post by englandsf » Fri Jul 25, 2014 6:29 am

If you try a pillow and are a suspected mouth breather, try really dropping the humidity and/ or temp - it can help clear your nose. Also Alkolol rinse contains alum which can help dry out your sinuses a bit.

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palerider
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Re: I'm Done. Cannot do this.

Post by palerider » Fri Jul 25, 2014 9:34 am

englandsf wrote:If you try a pillow and are a suspected mouth breather, try really dropping the humidity and/ or temp - it can help clear your nose. Also Alkolol rinse contains alum which can help dry out your sinuses a bit.
how much kickback do you get each time you mention that?

do they mind you misspelling their product name?

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Re: I'm Done. Cannot do this.

Post by lastlib » Fri Jul 25, 2014 10:10 am

I find my cpap pillow works wonders especially if I sleep on my side. I do not adjust my mask until I am on my side. What works on your back will not work on your side. I switched to Fisher and Paykill pilairo nose pillow because the pillow is bigger and the thingys that go into your nostril are made from a softer more comfortable plastic, the combination works on leaks and on nose irritation. Good Lugk

sawinglogz
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Re: I'm Done. Cannot do this.

Post by sawinglogz » Fri Jul 25, 2014 11:39 am

Congrats on getting your AHI down to 2!
Zeecat wrote:I noticed last night that while on my back I was snoring, so perhaps that could also indicate that I'm more prone to swallowing air in that position?
I'm definitely more prone to snoring and OSA flat on my back. So I avoid back sleeping to start with.

Additionally, to fend off OSA episodes my ASV (and probably any APAP or auto-bi-level) will start blowing higher pressure. Higher pressure can definitely contribute to swallowing air.
Side sleeping tends to push the mask off. Has anyone had any luck with the special CPAP pillows? I currently have a tempurpedic pillow but I'm willing to try just about anything.
The CPAP pillows didn't really help me, but they can't hurt to try. Everybody is different.

I sleep slightly tilted to my left with my head turned slightly further left. It is a bit of a challenge with the mask (especially FFM!), but I'm usually able to manage it.

I recommend left side over right, because I've found a link between aerophagia and reflux (LPR or "silent reflux") in my case. I've been more careful about eating earlier, not drinking huge amounts of water, etc. When the LPR is under control, I have less aerophagia, though I couldn't tell your for certain which is the cause and which is the effect.

Elevating the head of my bed didn't really do much other than make things uncomfortable, but that works for some people.

I did find that keeping my lower jaw further back helped as well. (I was prone to push it forward slightly due to a mouth guard.)
Lowering the humidity might help? This is good to know and the opposite of what my DME told me.
As others have said, every nose is different. Try different settings until you get the one that keeps you from feeling uncomfortably dry and also not congested. For me it was pretty much in the middle (except after flying, when I bump it up a notch).
Every professional I've seen said just keep trying masks until you get it right. Problem is, my DME doesn't agree. They are pushing specific mask styles and brands and when I requested something different it was a huge inconvenience.
I agree with Tattooed Lady on this one: it's their job. You might point out the ongoing supply business they're forgoing if they don't help you.

Good luck!

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englandsf
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Re: I'm Done. Cannot do this.

Post by englandsf » Fri Jul 25, 2014 11:45 am

Palerider - again with the "slammograms". You know your stuff for sure but why the hate?

Why do you assume anyone is paying me to post?

Alkolol (that's how it's spelled) contains alum which is a drying agent. That's all, no hidden agenda...

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Sir NoddinOff
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Re: I'm Done. Cannot do this.

Post by Sir NoddinOff » Fri Jul 25, 2014 5:14 pm

It amuses me to hear people saying their mask/machine is the 'bomb' and they promote it like it's the only cure. Hey, I think that's great because when you boil it all down, everybody is different. What works for some folks is poison for others (hmmm, why does that sound like life in general?)

The tough part about all of this is that it takes some people a very long time to find their sweet spot... and of course some folks unfortunately drop by the wayside in frustration... IMO, being sleep deprived fogs the brain so badly that rational decisions are nearly impossible. Poor sleep is definitely a curse. Like I said earlier, it's all a snapshot of life in general.

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Zeecat
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Re: I'm Done. Cannot do this.

Post by Zeecat » Tue Jul 29, 2014 10:15 am

Wow! So many great and supportive responses, thank you! I'm on other forums and none have been as helpful. I've been away but I wish I could reply to everyone

I live in a small town and have to choose between two DME's, neither of which are exactly "local". One of which is missing a sleep specialist because she opted to not return to work one day. I chose the other so I didn't have to wait another 4-6 weeks to begin CPAP. I can honestly see why there is such a high failure rate. At this point I'm opting for bypassing the DME, however I'm having trouble figuring out which mask to try next. I've tried the AirFit P10 and the Nuance Pro Gel Pillows. The Wisp nasal mask, and the ComfortGel Original nasal. Right now the Wisp is giving me the best numbers, though my husband has noticed my mouth open a couple of times. I noted this morning that the leaks causing an increase pressure make it more likely for me to open my mouth, which makes sense, but would a chin strap just result in more aerophagia because the air isn't able to go anywhere else? (I'm not sure that question makes sense outside of my head.)

I'm still 100% compliant so I'm not letting my frustration win, yet. My pressure has just been changed from the auto 4-20 range to auto 4-10. I had to arm wrestle with my Doc to keep a range and not set it at a specific pressure just yet because of the mask issues I've been having. Somehow setting it at 5.5 didn't feel like a good idea. I can't explain why I felt it wasn't right, but I did. If I've learned anything in life it is that if you don't listen to your body it will speak louder until you have no choice because it's given you a complete smack-down. The Icon doesn't have pressure relief, though that is a suggestion I received from my PCP when I complained to her about my difficulties.

Sadly, I haven't done so well with the Neti Pot. It literally makes me vomit every time. I've tried it in the past for sinus/allergy issues. I will try again with the outlook that my body and mindset have changed and hope for the best though! At this point I think I'm looking for what works best vs. the ultimate solution. Is it normal to need to wake up multiple times to adjust the mask because it's suctioned to the end of your nose or there is air blasting in your eye? I think I missed out on the explanation that offered some idea of what to expect, what has to be tolerated, what can be fixed, and that my expectations are too high.

I really appreciate your feedback and I'm definitely going to try implementing the suggestions, tips, and tricks.

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