Done. Finished. I GIVE UP!

[okcpa99]

At week 6 now of CPAP use and I just dont think I can do it anymore. I was supposed to see my doctor this week but I had to cancel due to work conflict and now they cant get me in for another 4 weeks.

I have tried both the quattro air and the hybrid mask. The quattro mask gives me a pressure ulcer on my nose (and I have it absolutely as loose as it can be, and use a pad-a-cheek liner, and have the gel pad). The hybrid feels great but I have many leaks and my AHI stays around 20 with that mask. My AHI with the quattro air is about 7-10 and is worse with leaks (of course). My leaks with the quattro air drives me nuts. I wake up the instant a small amount of air leaks out. I cannot even begin to estimate how many times I woke up last night with the quattro mask - many, many, many. And this morning I woke up with a red, swollen nose (my pressure ulcer from the quattro is still healing after 4 weeks of using the hybrid)

I am getting my second sinus infection since starting cpap (I am sure it is due to allergies, but it just happens to correlate with cpap use). I keep everything clean and am doing sinus rinses and taking mucinex and sudafed and nasal steroids).

I have tried so many things.
-quattro air mask and hybrid mask
-lanolin on the nasal pillows to help them seal on the hybrid
-I changed my CPAP pressure to a APAP pressure (just went up from 11 to 12).
-I tried ambien and trazadone hoping I would sleep through the discomfort - but no...
-I have tried essential oils placed by the filter area
-Liners, cover, gel pads, bandaids, etc...
-laying on my side, by back, my other side
-using a regular pillow and a cpap pillow


I am completly exhausted. Much, much more tired than before I used CPCP (did not know that was possible). The last two days, I have almost fallen asleep on the drive home). Am listening to audiobooks to keep my mind alert while driving.

I cannot make it another 4 weeks to be seen. Thhis sleep doctor is only in the office one day a week. Maybe I should look for someone else. I dread going to bed tonight. Will feel guilty if I dont use it, and misrable if I do. I have tried to be positive about this. Thought it would change my life for the better. I am tired, disappointed, sad, and crankyl. Just needed to vent a little.

[zoocrewphoto]

A couple suggestions.

If you have to, quit using the machine for a couple weeks (assuming you aren't trying to meet compliance) and still take that doctor appointment (or change doctors). Don't give up long term. It will bite you in the butt. I let mine go for over 10 years, and I am now paying the price with high blood pressure and other problems. My health could have gotten better a long time ago had I gotten serious about it back then.

Have you looked at any data or posted any data for people here to help you with? I see you have made several posts, but we've had a lot of new people, so I tend to get confused with who has what problems to work on. Let us help you work on solving the problems and getting you some success.

[TPS316]

I am not sure if you need the full face mask but if you can get away without one the resmed airfit 10 finally did the trick for me. The gel mask would blister my skin even at the loosest fit. The airfit 10 fits comfortably in my nose without causing any sores. It is very light weight which allows be to move around in my sleep without any issues.

Prior to this mask I also could not make it through a night without tearing it off in my sleep...

[library lady]

I'm so sorry you're having such trouble. I'm a new user, too, been on it for 2 months. I use Quattro Air, and tried the padacheeks but they didn't work for me because I felt like I was smothering with them. I then tried a different liner, RemZzzs, I got them from my DME. this liner took care of all the noise from the leaking, and it made a world of difference for me! I do still have some leaks, but they don't often wake me, and my AHI is where it needs to be. II have not totally acclimated to this alien on my face, but it is getting better.

Perhaps the two masks you've tried are not the right ones for you, I'd suggest trying others before you give up, many people have to try many masks before they find THE ONE. . or maybe a different size of the Air would work better. I need a FF because I am a mouth breather, but if you try other nasal masks or the Tap Pap, they have a much smaller footprint on your face (faceprint?) which could reduce the annoyance of leaking if you get the right mask.

There are many people here who have been where you are now with CPAP and if you hang around long enough you will get lots of ideas and encouragement as well as learn a lot. I hope you will try to stay with it, maybe your primary doc could be of help with ideas to tide you over until you can see the sleep doc. Did you ask if you could get on the wait list for a cancellation so that maybe you can get in sooner? You don't say where you live, but perhaps there is another sleep center or doc in a nearby city that could see you.

[Julie]

Just a tip - the congestion may be due to your having the humidity set too high (or low), and you might want to experiment with it in case your allergies aren't the problem - they tend to go away with Cpap. Humidity is not used by everyone at all, or sometimes only for part of the year - it's strictly a comfort thing and not therapy as such, so you may not need it at all.

[tombuttaccio]

Don't quit CPAP. Better find another doctor. That will make you successful. I was having same sort of trouble. Tried at least 6 different masks: hybrid and several full face and nasal and nasal pillows. Didn't think I could sleep with my mouth shut. Tried chin strap. Nothing was working. Then a fellow worker told me to try the nasal pillows again and this time start in the sitting position in a comfortable chair and fall asleep this way. Also, when your CPAP starts up and you're good and tired, keep your tongue at the top of the roof of your mouth. This will help keep your mouth shut.
My doctor told me not to pay attention to the mask fit reading or the AHI readings. He just wanted me to sleep more than 4 hours a night. I learned to sleep with a closed mouth in less than two weeks. I use a ResMed AirFit p10 nasal pillow mask now, and like it. Please REMEMBER: Sleep on your side. It will be easier to breathe for you.

[Moni]

I'm sorry you are having trouble! Here are some things that I found out. First, I figured out WHY the mask was leaking. In my case, when I started to doze off, my jaw would drop (my mouth doesn't even have to open) but the jaw drop was enough to break the seal on my first full-face mask. Also, the jaw drop would pull the silicone seal tight on the bridge of my nose and gave me a blister. I tried a nose-only, but every time my lips would part, the air would rush out and I would wake up. I switched to a mask that is designed to fit UNDER the chin, the FlexiFit 431 by Fisher & Paykel. It comes with Small, Medium and Large silicone seals, so you can try them all. I ended up using a small, which I would never have guessed if I had not tried it. The bridge of the nose area is very thin and flexible and I never get a mark on my nose. When I put the mask on, I lift it off of my face lightly to let the silicone fill up with air and I don't crank it too tight. I have been sleeping like a baby! Keep trying!

[okcpa99]

I am a mouth breather so I have chosen full face mask and a hybrid. If I used nasal pillows, would it keep my nasal passages open where I could breathe through my nose (and keep my mouth closed with a chin strap)?

I paid out of pocket for the hybrid. My RT at the DME told me the quattro air was the best mask out there and even though I told him I hated it, and even though he could see my terrible ulcer on my nose, he said that I just needed to give it more time since "it was the best". I was leaving to go on vacation in 3 days so I just bought the hybrid online and paid for overnight shipping.

I dont mind buying another mask but this could get quite expensive if I have to try several before finding the one I like. I believe my insurance pays for one mask every 3 months.

[PISAL]

My first full face mask was the Quattro and it caused red sore marks on my nose exactly like you descibe.

I am now using the Quatro FX and it conforms to my nose without causing any red sore marks at all.

The Quattro FX tends to move up and down on my nose a bit and leaks off and on as I change sleep positions.

You will get a lot of good suggestions here - folks are really interesting in helping solve difficult CPAP therapy problems.

PISAL

[robysue]

okcpa99,

I would suggest that you find another doc. Or be willing to speak with a nurse or PA in this doc's office in order to be seen SOONER rather than waiting for another 4 weeks.

Call the doc's office back and tell the receptionist who answers the phone that you are at your wit's end, you find yourself falling asleep while driving EVEN THOUGH you are using the CPAP, and that you absolutely have to talk to a nurse, PA, or a doctor about the situation as soon as possible.

When you finally do manage to speak with a medical provider, you need to tell them exactly what's going on:

• You've tried Ambien and Trazadone to help you sleep, but they don't work.
• Your current mask is giving you a pressure ulcer in spite of being used with a mask line and gel pad.
• You've tried at least one other mask, but that didn't work very well either.
• Your leaks are high, but you can't seem to figure out what to do about them.
• Your machine is reporting the AHI is still around 20.
• Leaks are driving you insane.
• And you are having sinus problems.

Hopefully this list of rather serious adjustment problems will get the attention of the doc (or nurse or PA) that you speak with and they'll make sure that you get seen SOONER rather than LATER.

As for what you can do: First, it's clear that you are not looking for just any silly old excuse to not do PAP. You are trying (hard) and you even say that you're going to feel guilty not using the machine. Realistically you may need to take a break of a few days to let that raw pressure ulcer more thoroughly heal. But then what?

Here's my advice:

1. Call the doc's office back and insist on getting a call back from the doc, nurse, or PA. See my above comments on what to tell them. If this doc won't respond to your loud cry for help, then start calling other sleep docs and switch docs when you find somebody who can take you SOONER rather than LATER.
2. It's time to give up on the two masks you've tried so far. You can't make a mask work if causes you to have serious pressure sores that take several weeks to heal. The masks that you've tried are both versions of FFM, so I assume you either think you're a mouth breather or you've been told you are a mouth breather. If you are unwilling or unable to try a nasal pillows mask, then the next thing is to find a FFM that is designed very, very differently from the quattro that's caused all the problems. And what masks might you want to investigate?
   • A 100% cloth mask like the Circadiance SleepWeaver Anew
   • A mask that has no forehead support if the problem is the forehead support is causing the pressure sore with the Quattro
   • A mask with a different kind of forehead support than the Quattro's forehead support
   • A total face mask like the PR FitLife mask
3. Get the sinus infection looked at and taken care of by your primary care physician. There's no need to add that to your miseries.
4. Carefully consider whether you need all of the current nose treatments. You say you are using (or have used) sinus rinses, mucinex, sudafed and nasal steroids for the sinus/congestion problems. Sometimes the problem with CPAP newbies is that the nose develops a bit of nonallergic rhinitis---this happens when the nasal congestion is NOT caused by allergies. And the (not so) funny thing about nonallergic rhinitis is that the sensitive nose can react badly to too much treatment, particular when the treatment is designed to help with allergic rhinitis. So as counter intuitive as it sounds, your nose may be happier if you did less "nose cleaning". Skip the saline rinses and the sudafed for a few days and see if the congestion starts to clear up. Likewise, if you're not allergic to anything, it's questionable whether the nasal steroid is of any real use. Use a simple saline nasal spray several times a day to help soothe the nose, but don't inundate the nose with a whole lot of simultaneous treatments.
5. Start trying to address the issue of how to get some sleep with the machine. Clearly you're not sleeping well with the machine. And there are all kinds of reasons why. But you need to make sure that you don't wind up with some serious insomnia on top of everything else. Make sure you follow basic good sleep hygiene rules as much as possible. Pay special attention to the need to maintain a regular wake up time (all seven days of the week if possible). Also pay attention to not overdoing the caffeine in an attempt to stay awake during the daytime. It's not easy, but in the long run it will make this difficult period shorter if you don't start doing things that encourage you to lie in bed while awake and fighting for sleep.
6. Turn the humidifier DOWN if it's up all the way. Turn it UP if you currently are using it on a minimum setting. How much humidity your nose needs is very much an individual thing. But as Julie says: Sometimes congestion problems are caused by too much humidity instead of too little humidity.
7. If you don't have a heated hose, consider getting one. If you do have a heated hose, consider turning the temp down. (Or up.) Again, a temp that is either too high or too low can bother the nose, and that can trigger more congestion.
8. Take the time to consciously relax and unwind before going to bed. Try to get all the CPAP stuff dealt with several hours before bedtime so that you can forget about it and enjoy the evening instead of sitting around dreading going to bed all evening. If you have ever done any kind of conscious relaxation techniques (mindfulness, yoga, deep breathing, meditation, etc), it's time to brush up on them and start doing them again if they ever helped you relax. As part of your evening routine, try to remember to turn the tv off and get off the computer/smart phone/tablet well before bedtime.

[robysue]

I paid out of pocket for the hybrid. My RT at the DME told me the quattro air was the best mask out there and even though I told him I hated it, and even though he could see my terrible ulcer on my nose, he said that I just needed to give it more time since "it was the best".

*sigh* I bet the RT has never, ever tried to sleep in a mask that has caused a terrible ulcer on HIS nose.

Truth is: The Quattro air may be (in some objective sense) the "best FFM" there is for the average person. But it is most definitely NOT the best mask for you. The very best mask for you might actually be a mask that works for very few other people, but somehow it fits you and you don't have (too) much trouble with leaks.

I dont mind buying another mask but this could get quite expensive if I have to try several before finding the one I like. I believe my insurance pays for one mask every 3 months.

Since you'll be paying for the next mask (or two) out of pocket, you might want to pay just a wee bit extra for "mask insurance" that will allow you to return the mask and get your money back (except for the insurance fee.) Many on-line CPAP stores do have some kind of mask insurance or mask return policies. And that would allow you to explore masks without spending quite so much. In fact, our host, cpap.com currently is allowing a free 30-return period on (selected) masks. That would allow you to try at least one more mask relatively risk free.

Also once you have some masks that you never intend to use again, but can't return, you might want to post to the THE GREAT MASK EXCHANGE (OR LENDING)thread that was recently started here for the very purpose of helping people
try masks and pass on masks that have not worked for them.

[HerbM]

I am a mouth breather so I have chosen full face mask and a hybrid. If I used nasal pillows, would it keep my nasal passages open where I could breathe through my nose (and keep my mouth closed with a chin strap)?

I was totally convinced that mouse breathing was the only way for me so my first order had an F & P Oracle HC452 ORAL mask.

Fortunately, the idea to have a nasal mask occurred to me before even the machine arrived, and my luck was very good in that my next order was for the AirFit P10 -- and it arrived first even though my Oracle was still in shipping.

This was incredibly lucky because it forced me to work through my severe, chronic congestion and inveterate mouth breathing.

Turns out, that WITH a lot of early assistance (lavage, sinus spray, Sudafed, and Nasonex) my nose was JUST clear enough to get started on CPAP, and after a week or so, it was possible to stop the sinus spray, then the Sudafed.

The Nasonex started working and the lavage was no longer necessary. By this time, the nasal pillow mask was apparently holding my nose open.

Caveat: I had NO trouble keeping my mouth closed -- the point here is that just because you think yourself a mouth breathing or chronically suggested (or both), it MIGHT be possible to work through that.

I paid out of pocket for the hybrid. My RT at the DME told me the quattro air was the best mask out there and even though I told him I hated it, and even though he could see my terrible ulcer on my nose, he said that I just needed to give it more time since "it was the best". I was leaving to go on vacation in 3 days so I just bought the hybrid online and paid for overnight shipping.

The Oracle was almost worthless to me; the Airfit P10 was working wonderfully, so I ordered the Innomed Hybrid after much research and discussion on the forums (over the Resmed version.)

Bottom line: The Hybrid WORKED well enough. It wasn't NEARLY as pleasant as the AirFit but after a couple of nights learning to fix the leaks and proving it worked, it was clear that should congestion return in the future the Hybrid will work until I can return to the Airfit.

I dont mind buying another mask but this could get quite expensive if I have to try several before finding the one I like. I believe my insurance pays for one mask every 3 months.

You can't use a nasal pillows alone unless two things are true:

You can breath at least with 'work' through you nose.

You can keep your mouth closed all night (perhaps by using straps or tape etc.)

IF you can use the nasal pillows, and the Airfit is likely the best or very close to the best, then there is a WORLD OF DIFFERENCE in CPAP.

Even my Hybrid which works is pretty annoying. The Airfit disappears for most of the night.

I have described the Airfit P10 as being just about as uncomfortable (or comfortable) as my favorite oversized t-shirt for sleeping. (Sure, occasionally it gets pulled funny under me or gets a wrinkle in the wrong place, but that fixable and overall it is just "not a deal".)

Last I check, our forum host was selling Airfits with FREE "return insurance" (and free shipping) for $100.

With return insurance you really can't go wrong.

Weird thing about CPAP.com is after a couple of weeks they ASKED me if I wanted to return it. They actually SOLICITED the return. Good folks who keep their word.

And NO! They cannot have the Airfit P10 back.

At this point, I don't need ANY support for my congestion except the mask and the CPAP machine. My nose even stays clear during the day.

[BobbyRay]

I've used CPAP for over 20 years. This July, I'll celebrate my 80th birthday. People guess my age at least 10 years younger, which I attribute to good genes and having used CPAP for all these years.

For many of those years, I had a mustache and successfully used full-face masks with a chin strap (I'm a mouth breather). Last fall, I grew my first-ever beard and boy did the CPAP issue start. I had all kinds of unhappy mask faces due to leaks, dry mouth, and bad AHI readings. I say "bad" because along with the mask leaks came LOW AHIs! ResMed confirmed that if a mask leaks, the AHI readings are unreliable.

After months and months of frustrations and mask experimentation while having all the bad physical and mental effects of poor sleep, I finally stumbled on a solution! And, I mean a REAL solution: 8 to 10 hrs sleep per night, no leaks, no dry mouth, and AHIs below 2.0! Last night, it was 9+ hours, no leaks, and a 0.6 AHI.

OK, what was the answer? First, for some other reasons, a doctor recommended that I wear a soft neck brace at night (have some neck arthritis). While waiting for my sleep doctor appointment (he had me test-driving a ResMed Swift Nasal Pillow mask, with which I had sporadic success), I saw an interesting pillows mask on his shelf, a Fisher & Paykel Pilaro Q. I tried it on and loved the way it fit into my nose (it's a one size fits all) and how comfortable it was.

My doctor gave me one and, bingo, with it and the soft neck brace everything fell into place: the neck brace comfortably stops the mouth dropping/breathing, and the Pilaro Q is a delight to use - both sleeping on my back OR on my side.

Two thumbs up!!

[Captain_Midnight]

I know of, and like, and have taken full advantage of many adages and aphorisms.

Of these, there is one, and only one, that has assisted, perhaps "guided", me in my life's various turns and speedbumps.

Please consider the following, by Sir Winston Churchill...

Never give in--never, never, never, never, in nothing great or small, large or petty, never give in except to convictions of honour and good sense. Never yield to force; never yield to the apparently overwhelming might of the enemy.
- - Sir Winston Churchill, 1941

I hope that this Churchillian wisdom will serve you, and anyone who reads the thread, very well; and that it might help to re-adjust to a success trajectory.

One other success-related tidbit. In my brief (8-yr) experience, a sense of humor maintained in the face of xpappian "speedbumps" can also be a big helper.

Best wishes to you. -- Capt Midnight.

.


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[okcpa99]

Thank you so very much for everyones support and suggestions. I am NOT going to give up. I know I need CPAP ("severe" sleep apnea with apnea events lasting 2 minutes). It has just been so difficult - especially physically which has made the mental part hard. When my first few nights did not go so well, I thought, "just give a little more time, everything will be fine". Then the pressure ulcer started and I thought, "just use padding and it will be ok". Then it progressed to a nasty looking ulcer and I thought, "no worries, just get another mask". When the new mask did not work, I began to have doubts and starting getting depressed.

I have ordered the Airfit P10 nasal pillows with chin strap tonight (with return insurance) from cpap.com (btw... I love how autocorrect always try to change "cpap" to "clap" - makes for some interesting sentences).... Paid extra for shipping so I will get it by Thursday evening.

So I have to survive the next two nights until my next mask arrive. So I am thinking about short term goals:

1) get some sleep! This is most important. I am a healthcare provider and I cannot make mistakes when prescribing medications or trying to diagnose problems. So I will go to sleep with the hybrid mask on but I am not going to stress if I wake up and I will just take it off and try to sleep the rest of the night
2) try to let my nose heal - will not use the quattro air!!!!!!!!! I am using silicone pads to prevent scaring, however, I think I will have a scar from my pressure ulcer.
3) take suggestions by others: I am going to turn down my temp (currently at 71) and my humidity (currently at 4.5).
4) not get upset about the cpap (substitute "clap" as my computer does). So tonight I am having a couple of beers and watch tv and try not to think about it (ok.. maybe a bit more than a "few").
5) call the sleep center at another hospital and ask for an appointment with a physician/provider that can see me without waiting another 4 weeks. Will have to get reports from sleep center. I am in OKC and we have a dedicated sleep center at a hospital (not the one I went to). Not sure why I did not go there in the first place but I thought I was going to a good place. Will be calling the sleep center and let them know my problems). I am going to ask for some nuvigil/provigil to help me survive until I can get all this worked out.


Do 1, 2 and 3 until Thursday then try the nasal pillows and chin strap and then hopefully get in to be seen quickly.

I had a feeling that I would get some good suggestions and support if I let everyone on cpaptalk know how frustrated I was. I have been complaining to my husband and he just says, "don't use the cpap (again, insert "clap" to that sentence). So it is hard to get the support of family when they have been through the same trials.

I love you all! Thank you, thank you, thank you.

The beer is kicking in so I better go before I type something I regret!