yet another noob

[Guest]

My turn to not be able to log in..

Got a few masks out on loan from the sleep lab last night. Slept with a Fisher & Paykel Flexi-Fit Nasal Mask last night. I slept pretty good with it on, but the bridge of my nose is still sore and red 4+ hours later, even though I felt pretty comfortable with it on.

Tonight I'm going to try the HybridMask "Universal Interface" out.

The guy at the sleep lab had never heard of the Aura/Twilight/WhateverNewName, but is willing to order a 'scrip for one if none of the loaners work out.

[robbieh]

Hi Jeff, welcome to the world of masked sleeping! This is the best support group on the planet, glad you found us.

I have been through I think about 10 masks. I had all the same issues you describe. One night is heaven followed by nightmare leaks and pains. I just got the ComfortLite 2 mask and have had no pain issues and the hose goes over your head eliminating the hose around your body problem. It also comes with both nasal pillows and a very simple nose mask. You can sleep on your side very comfortably with your face touching the pillow instead of having to lay on the mask.

You are doing everything the right way in finding what works for you and you will find it eventually.

p.s. If I ever wake up to the sky opening and angels singing... it would scare me to death because that would be what happened...

[geoDoug]

Some nights you may only be able to tolerate it for an hour, other nights you may wake at 3AM and find you can't tolerate it, but after a while you'll wake up from using it all night and you'll feel the difference.

Not taking away from anybody here, thank you for the dose of reality.

What I hear consistently on this board is the extremes: complete non-compliance versus using the CPAP all night "success stories." If a person didn't know better, they'd think that they were an abject failure for at least putting the mask on every night, which in and of itself is an accomplishment, even if they occasionally can only handle it for a couple of hours.

I suppose to a degree this isn't surprising. The extremes being what's reported is normal--after all, that's where a support group enters the picture--but I suspect most people fall somewhere in-between. But like I said it's frustrating for somebody who goes to bed every night with his mask on but a couple times/week takes it off after a couple of hours, and according to Encore Pro has a 65% compliance rate.

Doug.

[ozij]

I have to disagree with you, Doug.

There is - or should be - a major difference between the first weeks of struggle and what happens later.

The beginning is difficult for many of us. I expect that here on the forum we don't see many of those who put on their a mask, run the machine and sleep without problems from the first night on. Personally, I doubt there are many of those, but that's beside the point.

In 2.5 years on the forum I"ve read many many posts of people having come to the forums because thay were upset at the diagnosis, and had big problems with the therapy. I am one of those whose therapy is working only thanks to the tips and information I found on the forum. 2.5 years after I started, my compliance is 100%. But my first 6 weeks were dreadful - and I took off my cutting edge masks after a few hours because they were literaly that:cutting me. I even stoppped therapy entirely and insisted on meeting the doctor after waking up with a terrible headache when the pressure was set to 7.5 constant - which was too high. I have many people on the forum to thank for the therapy - and I am not the only one who feels like that.

I learned about hanging the hose, protecting my nostrils, hose covers and heated hoses, the importance of humidification on the forums - and they all made my therapy easier. I also learned about my favorite mask (the Headrest / Aura / Twilight NP) on this forum.

Achieving 100% compliance should be the aim of everyone - that is not an "extreme". Its not easy, in may not happen in the first month or so, but if a person is not 100% percent compliant after 2 or 3 months, then they're not getting proper therapy - it should not be acceptable to them.

There is no reason to suppose that a normal (bell shaped) distribution is the proper description for cpap compliance, and no reason to call 100% compliance - after the bugs have been ironed out - "an extreme". Once the bugs have been ironed out - and they may be many - 100% compliance should be there for the majority. It should be the aim of everyone. It doesn't happen overnight for most of the people who come to the forum, but the hard time at the beginning should not discourage anyone.

65% compliance means you're using the mask for more that 4 hours a night only 65% of the time. The rest of the time you're being choked at the same frequency you were being choked before therap started. Since the aim of therapy is to keep you from being choked, I would not rest (no pun intended) if that the highest compliance I could achieve - till I found the solution that helped me be 100% compliant.

And I sincerely hope that you too will be 100% compliant soon.

O.

[geoDoug]

I have to disagree with you, Doug.

There is - or should be - a major difference between the first weeks of struggle and what happens later.

Actually, I don't think we really disagree too much. By no means was I minimizing the value of cpaptalk. I was only highlighting why the post about being partway there meant so much to me. The collective wisdom of this place is phenomenal and has been a godsend to me getting up and running. I couldn't possibly have gotten as far as I have without the support I've received. This is why I included and italicized "not to take anything away from anybody."

My point, which looking back on it I didn't make very well, was that there seems to be a gray area somewhere between "I was just diagnosed" and "I just achieved a phenomenal AHI!!!" when it comes to personal stories. I'm not talking about the support that comes in the form of, say, the seeming unending mask-rotation process. What I meant was, I see far few personal stories about people being 50% there. That's why the comment about occasionally having nights where you take off your mask in the middle of the night meant so much to me. Did that make a little more sense?

Please understand that I'm not disparaging anybody here individually or as a whole.

Doug.

[ozij]

I know you're not disparaging anyone, Doug.

I just wanted to be sure that beginners slogging through those difficult first months don't give up when they're only partway there.

Sometimes the beginning is so hard, that it's only by hindsight that you know you were partway there.... I guess that's why people rarely post "hey, I'm halfway there, isn't that neat" messages.

O.

[Guest]

My turn to not be able to log in..

Got a few masks out on loan from the sleep lab last night. Slept with a Fisher & Paykel Flexi-Fit Nasal Mask last night. I slept pretty good with it on, but the bridge of my nose is still sore and red 4+ hours later, even though I felt pretty comfortable with it on.

Tonight I'm going to try the HybridMask "Universal Interface" out.

...

Still unable to log in.

24 hours later and the bridge of my nose is still red and sore to the touch from the F&P. I attempted to give the HybridMask a whirl last night. I didn't even bother trying to go to sleep with it on. The only way the thing would seal was to pull it tight to the point beyond discomfort and into pain territory. It seemed to seal to my face very well. The leaks were where the soft material of the mask meet the hard plastic parts - they are just a loose, slip fit. I threw it back in the box.

Back to the drawing board.. And the OptiLife. I slept pretty good with it last night. Woke up around 3am and again at 7.

Time to make the coffee. *yawn*

[___H]

24 hours later and the bridge of my nose is still red and sore to the touch from the F&P. ...

As an added bonus, after looking at myself in the mirror after posting earlier - the angry red mark across my nose is now accompanied by little pus blisters. Just like I got from the ComfortClassic.

Good thing my wife is OK with the whole for better or worse thing she agreed to..

[sharon1965]

jeff

i had that f&p interface when i first started, as that's what they used at the titration so the dme gave me the same one to start off with

found that i would get a pressure sore on the bridge of my nose almost right away, no matter what size i tried

had to switch to nasal pillows because my skin just wouldn't tolerate the nasal mask style

those pressure sores can be hard to deal with, and man, they really do hurt, don't they?!...make sure you put something between the mask and the sore, like moleskin...you don't want to allow the skin to break, it can take 2 weeks to heal

are you having issues with the optilife?

have you checked out padacheeks.com? she's a board member and she can hook you up for much more comfort

btw, i have found the most success with the "twilight/aura/headrest/whatever" so far,--which i had to buy out of pocket cause they claim they can't get it for me here--although the breeze isn't too bad

[j.a.taylor]

Jeff,

Welcome to another fellow CPAPer (and looks like a fellow Calvin & Hobbes fan).

As you can already tell from the multiplicity of replies, this is a great group of people, willing to provide all the help and support you need.

[cflame1]

you sure that you have your hybrid put together right H?? Mine securely slips together... doesn't come apart unless I pull it apart.

[Guest]

...
those pressure sores can be hard to deal with, and man, they really do hurt, don't they...

are you having issues with the optilife?

...

Yes. and yes.

I had pressure sores on my nose and forehead after my titration night at the lab (ComfortClassic).

The OptiLife just doesn't seem to be the ideal setup for me as I move around a lot in my sleep. I have achieved a level of comfort with it, but am hoping to find something better.

[Guest]

you sure that you have your hybrid put together right H?? Mine securely slips together... doesn't come apart unless I pull it apart.

The one loaned to me was brand new, right out of the box. We test-fitted it at the lab for comfort, but did not leak test it there. It did seem reasonably comfortable, but I could not get a leak-free fit on my face without discomfort.

It seems any appliance that rests on my face is going to be trouble for me. I'm going to get my hands on an Aura soon. Then probably get to chopping it up..

[Guest]

It seems any appliance that rests on my face is going to be trouble for me. I'm going to get my hands on an Aura soon. Then probably get to chopping it up..

go for it, jeff; i think you'll be glad you did

[Slinky]

Mack's Silicone Ear Plugs for under $5

I took one, broke it in half, rolled it out as far as I could between my fingers, making a little rope out of it. Then I smooshed it flat and put it on the inside part of the nose part of my UMFF mask...the little thin skin cushion that goes against my face. It stuck, but just barely. Then I took the rest of it, broke that in half, did the same rope and smoosh thing and put one of those in each side of the lower side part of my UMFF. They didn't hardly stick at all, but stayed on.

I got up, went to the b'room, took a smoke break (yeah, yeah, I know), then back to bed until the alarm went off at 5:30 AM. I examined the little silicone seals this morning and the ones on the bottom of the mask kind of "migrated" just a teeny bit, but the top one was just where it was last night. And, like I said, NO LEAKS, even though I toss and turn from side to side. I think I can get at least one or two more nights with 'em.

PerchancetoDream, you deserve the "Lab Rat of The Month" award! Thank you so very much!