anyone had a relapse of non compliance after long cpap use?

hey all
some of you may remember that cpap has been a struggle for me on and off since january 07, but that i've done my very best, tried everything there is to try and have stayed compliant from day one, so it's been about a year and a half

since i had a new study done in january, i've been having a helluva time:
the doc. had me increase my pressure from 8.5cm to 10cm, which isn't much of a difference, but seemed to be enough to start me mouth breathing/leaking, which hadn't been an issue before

i tried to stay at 10cm using a chinstrap, or taping, or trying one full face after another, but i could feel myself gradually slipping back into the half alive world of the walking dead, where i had spent many years pre-cpap

so i went back to 9cm, and the mouth breathing stopped, but then the allergies kicked in, and a few times i found myself just too congested to wear my mask...well that has turned into a slippery slope, where after giving myself permission to skip here and there, it has become an issue

almost every night for the last month or so, i've had to really talk myself into putting the mask on at all, and usually yank it off after about 4 hours

i'm working on giving myself a talking-to each night and i don't suppose i'm really looking for a lecture on the importance of cpap compliance...obviously i already know that, or this wouldn't be so upsetting for me

i guess i'm just looking for some support and encouragement

any of you veterans been where i am?

thanks
sharon

I'm not a veteran...been doing this for only five-six weeks and I do know a few things. ..sometimes.

Sometimes it's hard to do things that we know are for our better ...for lots of reasons, for lots of different things. But in the end it's about self-love and how truly self-caring and loving we are willing to be to ourselves to get through the hard stuff, to do the hard things, a day at a time....or in our case, a night at a time.

So strap on that mask, turn that sucker on and just do it breath by breath. There are so many of us out here willing to encourage you, who want you and everyone who needs this therapy to succeed.

This is about living....the quality of our lives but in the end just living and getting a chance to be all that we can be, healthy and breathing.

So ...well heck, I hope this is encouraging... every single one of us matters.....

I know for me, allergies are better while wearing the mask. Maybe you need to give it a try when you are congested to see if it doesn't clear up for you.

Good Luck,
GumbyCT

silver123 wrote:I'm not a veteran...been doing this for only five-six weeks and I do know a few things. ..sometimes.

i didn't mean to exlude newbies from replying, i only meant that 'veterans' might have a better idea of what i'm going through...when i was on cpap for six weeks i had all the fortitude in the world...after a year and a half of struggling and only realizing minimal benefits, you can see how i could become jaded

did you experience ANY good nights at the higher 10 cm?

If so you may have been on the right track, because starting to mouth breathe may indicate the pressure was finally correct where you fully relaxed, such as when you reach REM sleep. When that happens the lips can part, mandible drops, and finally tongue comes out of the palate and you are then mouth breathing.

oh crap snoredog, you always make me think, dammit!

yes, i suppose you're right, that i did sleep deeper at 10 cm, but the episodes of mouth leaking (the sound and sensation) woke me repeatedly as did the extreme dry mouth

hmm, food for thought...i just don't want to face trying another full face, pun intended

It is not uncommon to go through periods of good results then periods when things do not seem to be working well. When this happens I usually change things until results improve. I look for leaks in the humidifier seal or the breathing circuit. I get a new mask even when the old one appears to be fine. Get a better chin strap. Check the pressure at my mask with a manometer. etc. etc. Just keep trying things. You must eliminate mouth leaking or mouth breathing because cpap does not work if this happens. Changing pressure is useless if you are losing cpap pressure because of mouth involvement. You should make sure that your mouth is sealed then use your software and data card to figure out what is going on.

GeneS

I titrated on the mask I am using, a Mirage Quattro. It was apparent immediately to me that nasal masks of any kind were off the table, I am a mouth breather, and the nasal masks instigated a gag reflex when mouth breathing.

I guess since I've never experienced anything else, I am o.k. with the Quattro. It took a few nights to figure out where it sat most comfortably on my face, but at this point generally have it figured out. Probably in another week or two I won't even notice the mask.

Though I would be lying if I said I wasn't tempted to try a hybrid mask. And I wonder if a hybrid might be an acceptable compromise for you.

Snoredog wrote:did you experience ANY good nights at the higher 10 cm?

If so you may have been on the right track, because starting to mouth breathe may indicate the pressure was finally correct where you fully relaxed, such as when you reach REM sleep. When that happens the lips can part, mandible drops, and finally tongue comes out of the palate and you are then mouth breathing.

sharon1965 wrote:oh crap snoredog, you always make me think, dammit!

yes, i suppose you're right, that i did sleep deeper at 10 cm, but the episodes of mouth leaking (the sound and sensation) woke me repeatedly as did the extreme dry mouth

hmm, food for thought...i just don't want to face trying another full face, pun intended

Sharon, you're using a fixed pressure machine - the Pro 2. And you've been trying to get it to work for a very long time.
If you have so much trouble using it at what seem to be the right pressure for you (10 or 10.5) then I would seriously suggest switching to an APAP.

My experience with a properly set up PB has been excellent: The PB has you inform it of your preferred pressure as its initial pressure (that would be in the vicinity of the Rxed). You comfort pressure would be set up as the minimum, (I would guess 8 in your case) and some leeway can be given at the top. Setting it up like that gives the machine a bias to return to the preferred - both from above and from below. Set up like that it responds quickly and flexibly to your breathing pattern giving you the higher pressure only when you need it.

Your recent congestion may be the result of mouth breathing - and may get better once your cpap treatment is properly dialed in.

I'm sorry to hear you're having such a hard time, I hope you will find a way to get the therapy to work soon.

O.

That has never happened to me....I always knew without was worse than anything with.

Why don't you try polident strips with a terry cloth headband around your mouth / cheeks. That has worked great for me as far as mouth breathing goes and is simpler and way less painful than tape.

I take one strip, give it a slight bend, wet my lips, and put it on my bottom lip and close my mouth. I then slide my headband over my head down to my mouth and head for the bed.

Good luck!


JeffH

Hi Sharon,

Have you tried poli-grip strips? They really helped me.

Sorry you've had to "fall off the wagon", so to speak.
Also sorry to hear you are struggling.

I wish I could offer you more suggestions/support, you have always been so helpful and supportive to me and others. I know when I've had to be off CPAP a couple of times, it WAS kind of like starting all over, with the sinus-y issues, but after about a week it did get better.

Sending positive thoughts your way! Hope you can work through it all soon, and feel better.

Sharon, I might echo what OSIJ suggests.

I'm usually most hesitant to recommend expensive solutions, until the cheaper alternatives have been tried; however, one difference that I notice between my former CFLEX and my current AFLEX auto is that I used to get those dang mouth leaks at a rate of several per week, and now I simply do not.

I have no idea why I don't get them w/ AFLEX (and maybe it's peculiar to just me) but it might be something for you to consider at some point.

Good luck solving the leaks issue, and with successful continuance of the xpappian adventure.

Sharon, sorry to hear you're having trouble at this point. Well, it took me over a year to really get on track since my sleep is so whacky. Sometimes when I get up in the middle of the night I'm tempted for just a moment to just lay down. But after my last study results, I'll never intentionally lay down without it - too scared.

You'll get back on track. It's like anything else that we have to do to take care of ourselves - sometimes we just get tired of doing what's right. I doubt you can wander too far - it's hard when we know what we know.

I feel ya.

Kathy

I haven't gotten there yet, but I have a good friend who has stopped CPAP. He lost weight, and was convinced he didn't need it anymore. After a year off it, he's come to believe that consistant quality sleep is preferable to what he's getting now.

I'm loaning him my APAP tonight to do a self-titration for a week. I'm also setting him up with a Nasal Aire II mask, because his last mask leaked around his facial hair. And I'm giving his wife some ideas for making him the ultimate chinstrap.

This is all contingent on my being able to tolerate whatever old war horse CPAP he's going to loan ME. I asked him if it had Cflex, and he replied "What's Cflex?" I really hope it does. I think he has one of the pre-M series Tanks. I'm gonna download manuals for whatever it is once I see it.

Anyway, my point being - you need to make a change somewhere, so you can get back on the horse. Sounds like you've tried everything except Bret's PAP-CAP. Get one of those. Try some more self-titration. I know you don't like the NAII, so I won't say go there, but maybe the new Swift LT?

Anything at all I can do, you know I will. Keep us posted. And know we love you.

{{{{{{{Sharon}}}}}}}}}}

Yer Pal Babette

Oh Sharon, do I know how you feel!
I have been a Cpap user for almost 2 yrs now. The first six months were hell.
I am a mouth breather, so they recommended a full face mask for me... my claustrophobia had me yanking it off in panic every night. Long story short between my DME and my taking matters into my own hands, I got myself a nasal pillow system and got a chinstrap. I loved it. The only problem is that it seems every 3-4 months I have to go on this battle for about a month where NOTHING works right, and my TMJ acts up from the chinstrap. I manage about 3 or 4 hours every night, fighting the system and just feeling like dog doo during the day.
Im having one of those episodes at the moment. I am actually researching masks again, looking at maybe a hybrid so that I can get away from the problem with my chinstrap agravated TMJ.
One of the ways I deal with all of it too is to just take EVERYTHING apart. Straps, head gear, hoses, ALL of it, and put it back together. I think sometimes sleeping with this stuff every night things get all out of whack and redoing everything seems to help. After Ive done that, then I find myself usually replacing my mask, which is the ultimate solution: everything is brand new, there is no "memory" on any of the gear and it works much better.
Remember this too: the silicone components of masks wear out, 4 months minimum, 6 max. Those parts HAVE to be replaced. Im just lazy and tend to go whole hog.
If you havent replaced things in a while, it will make that pressure change you went through that much more noticeable to you and aggravating. And I agree that you are finally falling into a deep enough sleep at this new pressure (good thing!!!) that you are relaxing and discovering that you are a mouth breather.
Hang in there! We'll both just bully our way through this! (if I dont throw my mask through the wall... like I nearly did last nite .. wish I were kidding!)
Jen