In tears and frustrated

I've been at this for about a month now, and have only had one or two nights when I feel like I slept well. Since switching from the ComfortGel nasal to the Quattro (because of chipmunk cheeks and upper teeth pressure), I just can't get the durn thing adjusted. I've followed the directions that came with it, searched this site and tried what others have done, and just can't get a good seal. I can adjust it fine for the ramping up, but when it hits full measure (16/10) it blows right off my face. so I wake up every 45 minutes or so. I feel so frustrated!!

I know that this therapy will save my life. Even without good nights, my ribcage doesn't hurt anymore when I get up, and my whole body does feel a bit better. I take naps (with the machine) on weekends, and have a lot of catching up to do. I'm determined to find a way to make it work. But this last week with the Quattro has been impossible!

Once it is actually out there, I'm going to talk to my DME about the FullLife face mask. The DME has some kind of contract with Respironics and its related companies, so I can only get masks made by them. My DME did let me exchange the nasal for the full face and deal with my insurance, so I'm hoping he will let me try another exchange.

Where do you folks get the opportunity to try a whole bunch of masks?

Any other suggestions?

Are your settings for Bipap or auto-Bipap?

If they are for straight Bipap... put the machine out to full pressure, then adjust your mask... while you're awake.

Some of us have gotten masks in trade, some from cpapauction, some from purchases.

I'm using the same mask. First, confirm that you are sized correctly. Never take anyones word other than the mfr's. Print out the sizing guage and check your face.

According to the sleep lab tech, "grasp the elbow, smash the mask into your face and cinch down the straps" You'll get a nice sore on your nose proving the mask was tight

Over tightnening causes nothing but problems.

Think of the mask as working like one of the hydrofoil boats, the boats that have big fans on the back and the skirt around the edge that puffs out. The mask needs to inflate the seal just like a balloon to seal properly. It is NOT a compression fit like a Mason jar lid.

Make sure your face is clean & dry.

DO NOT ever slide the mask around on your face to position it, always pick it up to reposition, grasp the knob & the elbow using both hands. With your higher pressures, you'll probably have to power down the machine to reposition, the seal on the mask is very soft and will blow out if you pull the mask away at 10cm.

As others have pointed out, gently rest the mask on your face and tighten it just enough to keep it from sliding off. Even up the velcro tabs on each side so the tension is equal.

Lay down on your pillow, slide the head gear around until it's all laying flat & even. The bottom straps seem best for me when they are low near the jaw line.

If you can, start with low pressure, if you can adjust your machine to around 4-6, that would be better than starting out at 10. At 10, it would be best to power down, reposition, then power up.

Set the bridge knob about mid range, pull the mask away from your face & move the mask up & down your face to find the sweet spot where it doesn't leak into your eyes, (don't worry about the cheek leaks yet). Then adjust the top straps about 1/4" shorter each side to give you some tension.

Next, adjust the bottom straps so it doesn't leak at your cheeks. Roll a little left & right on your pillow, tighten the straps a little at a time to stop the cheek leaks. No more than 1/4"-1/2" each side each side should be required. If you get leaks at your eyes, adjust the bridge knob 2-3 clicks to compensate. Likewise, if your eye leaks are good, but cheek leaks persist, adjust the knob to compensate.

As you exhale or at the transition point from exhaling to inhaling, you should feel the seal puff up or tighten against your face and likewise relax some as you inhale. You should be able to to run your finger around the edge and feel the seal puffed out.

If you get a blow out. Turn off the machine, reset your mask position by lifting it, then adjust the straps 1/4" shorter each side. I've only had to fine tune the bottom straps.

The mask should 'float' on your face, you shouldn't feel any painful pressure points.

I've only been at the CPAP gig a few days but I've tinkered with my mask settings enough to fine tune it leak free even with my mouth opening. I'm pretty happy with the Quatto, I have no comfort issues with it and can hardly tell it's on my face. (Now the noisy machine is a different story) All that being said, you may still need a different mask that works for you & your face shape. Don't give up!

katcw,
i'm pretty new at cpap too. i have tried several masks... the first one was a comfort gel nasal mask. it rubbed a big sore on my beak...so i dipped it in boiling water to custom shape it...and i still can't tolerate it...so i went back to my DME within the 30 days trial period and she gave me another one. the second mask was a Swift LT for Her nasal pillows mask. i was wigged out by that one because i had trouble exhaling against the pressue. so i went back (again within the 30 days) and my DME gave me a mirage activa LT nasal mask ....which is very comfortable and sometimes when i wake up i cannot even tell it's on my face until i open my eyes.....but it still rubs my nose bridge a little bit.

So! I went back to using the Swift LP for Her nasal pillows mask! I talked myself into working with it...and now it is my all-time favorite. Occasionally my nares get sore and I'll switch back to the Mirage Activa for one night...it's a balance to give different parts of my face a break! the point is....there are many mask types out there...and it may take a while to find the one or two you like. see if your insurance/DME will honor a 30 days trial period. worked for me! I now have 3 masks to work with...back ups in case something goes wrong with my main one. good luck!

I run a free Test Drive for the Nasal Aire II. If you'll PM me with your mailing info, I can have one out to you by tomorrow.

You can find out about more free test drives by clicking on the links in my signature block below.

We've all been where you are. Hang in there, we'll do everything we can to help.

Cheers,
Barbara

Babette wrote:I run a free Test Drive for the Nasal Aire II. If you'll PM me with your mailing info, I can have one out to you by tomorrow.

You can find out about more free test drives by clicking on the links in my signature block below.

We've all been where you are. Hang in there, we'll do everything we can to help.

Cheers,
Barbara

Barbara,

Thank you so much for your offer! Unfortunately, I need to use some kind of full face mask or I get "chipmunk cheeks" -- so I'll have to pass. However, I think it is a great idea you are doing, and I see that others are also offering test drives.

Thanks again!
katcw

I've been there (in tears) for different CPAP reasons. I was almost ready to throw in the towel somewhere between week 5-7. I'm glad I stuck with it and found my solution to leaks with my Swift LT: the PAPCap. However, I want to try and encourage you to stick with it and find the mask the works for you.

I just recently got a Quattro, but I have yet to get a good seal on the thing when testing it. I even downgraded from a large to a medium, which seems like the right fit, but it just won't seal.

Anyway, I don't want to hijack your thread. The solution is out there. Maybe a nasal mask with a chinstrap?

Wow, Rustyolddude! What a great, painstakingly detailed description of how to work on a FFM to get it right! Thanks for that, as you gave some ideas that I had not thought of, and will definitely use to continue my quest for a great back-up FFM.

If you can get another exchange, you might want to try the UltraMirageFF. My husband tried and tried with the Quattro and we couldn't get it to seal as well as having a sore nose. He's been successful with the UM. Also, the right bed pillow makes a big difference especially if you're a side sleeper.

DoriC wrote:If you can get another exchange, you might want to try the UltraMirageFF. My husband tried and tried with the Quattro and we couldn't get it to seal as well as having a sore nose. He's been successful with the UM. Also, the right bed pillow makes a big difference especially if you're a side sleeper.

I have to agree with DoriC - Some people seem to fit better in a quattro, others seem to fit better in the UMFF. Try the UMFF.

Regardless of the DME's contracts with particular companies, you are not under that obligation. They're taking advantage of the probability that if they tell you, 'That door is closed,' you'll automatically assume it's also locked. Well it's not. They are handling you. You are a mark - a profit to be made. They just don't make as big a profit from your insurance payment if you choose a mask that isn't their first choice. If your doctor prescribed a very specific non-respironics mask, they are required to provide you with that specific mask. If you are prescribed a mask of 'patient's choice', that doesn't mean a choice of what they want you to choose from. It means whatever you find available. They have to order it and sell it to you.

Being nice to them about your life decision and comfort is not helping you - only them. DME personnel are trained to step on you and make you like it. Because you are now aware of the situation, you don't have to be rude, but don't let them handle you. If they won't work with you, tell them you'll take your business to another DME. If you have BCBS or medicare, you may be eligible to buy a mask online from CPAP.com, using their billmyinsurance.com gateway.

Edit: I got the opportunity to try lots of masks at the sleep center the morning after my first sleep lab. That doesn't always happen, though. They were very nice there.

DoriC,

I love your picture!

mar

Thanks Mar, you are too kind! My teenage granddaughters were visiting this weekend and "surprised" me after they left with a new desktop photo of them, new screensaver of them, and this new avatar of me! Don't know how they do these things! Grammy doesn't have the heart to delete it (yet) .

Now for the business at hand, when we first went to get our 3month replacement for the same UMFF(Resmed) which hubby was finally successful with, we were told by DME that they didn't stock it anymore and couldn't "special order it", and we would have to try ComfortFull(Respironics). We had tried all the "Comfort" masks in the beginning with no luck and they had a record of all that. I immediately called Medicare and they said as long as the UMFF was still being manufactured, the DMEs have an obligation to keep them in stock for their patients. The nice lady said not to worry, she'd take care of it. That same afternoon the DME called and said they had found some UMs in stock(a miracle!) that were on the "wrong shelf", and would even hand deliver one to us that day. (No mention of a call from Medicare). I politely replied Thank You and I said "I'm sure we won't have the same problem in the future". So I guess the lesson is "Power to the People"!

Dori, I always knew you were a hot redhead.

Great pic!!!!

Kat, do keep trying different masks. Some people just really need to jerry-rig their setup to get comfortable and find the right flow. I was convinced I would need a FFM, but I'm doing so much better with a nasal prongs mask and a chinstrap.

Have patience, and know you're not alone. We're all in this with you.

Hugs,
B.