New guy... on CPAP for a little over a month...

[jayk1998]

and I'm about ready to throw this thing into the lake.

I am using a Resmed S9 (not sure which incarnation) and a Quattro FX full face mask, which is leaky as all hell. I don't think the leaks are big, but they are DIRECTLY into my eyes. I've tried the gel squishy thing, which just smells weird and makes farting noises as it blows into my eyes. The mask doesn't leak if I lay still flat on my back, and I can sleep that way for about 2.5 hours before my back gets mad (I had back surgery a few years ago, and it can only take so much) and rolls me to my side... then the leaks start. I bought the contour pillow, no help at all. For a while, I'd sit up, refit, and make a futile attempt to get back to sleep on my back. Now, I just take the mask off, turn off the machine and go back to sleep.

My AHI is lower, but again, with the CPAP I'm only getting about 2.5 to 3 hours of sleep. I'll lay awake in bed with the CPAP on and running for long enough to get me to compliance, which seems like cheating. I'm starting to wonder if 8-9 hours of bad sleep is better than 2-3 hours of good sleep, 5 hours of bad sleep and a truckload of frustration.

I've been reading on here about other masks or gadgets and modifications to the QFX to help this problem, but I am currently out of work and don't have the disposable cash to throw good money after bad at this point. If I knew something was going to work I'd jump on it, but I can't afford for trial and error to be mostly error.

Does this ever get better?

[cflame1]

if you've had your mask for less than 30 days... take it back to where you got it from and get something that fits better! The DME should have a 30 day return policy with the company that produces the masks and therefore they should replace it.

[jayk1998]

I've tried. The RT "helping" me has basically told me that my insurance company won't cover another mask, so she won't sell it to me. There is a "warranty replacement" that was used up after she sent me home with the wrong size. I qualify for another mask in 2 months.

[cflame1]

honestly I would have fired the DME for that. There's no way that your 30 day replacement (which is covered by the mask manufacturer, not your DME) should have to be covering a wrong sized mask that they sent out.

[napstress]

Your situation sucks! I call it "mask wrangling." If you haven't done so already, check out Janknitz' "Taming the mirage quattro." Yours is a different mask, but the principles are the same. I have the kind of mask you have. When I read and followed her instructions, I went from only being able to wear the mask for a couple of hours to being able to do so for four hours—that very night. You could also use the Search feature on this site to read about mask-placement techniques, if you haven't done so yet.

Too bad they won't replace it for two months.

BTW, your AHI might be lower b/c you are only wearing the mask for a couple-few hours per night. Not sure why that is, but it happened to me when I was mask-wrangling.

Good luck!

[lullaby]

jayk1998
I'm in exactly the same situation as you. I'm on week 3 and need a ffm as i'm a mouth breather. I also sleep on my side as i can only sleep on my back for a while. So far, i've tried the Quattro FX which leaked badly, the Quattro FFM which was better but still leaked into my eyes and now i'm trying the F&P Forma. The Forma is probably the best so far however it still leaks but only around the chin area and not into my eyes. It does however make leaking noises unlike the previous two so i have to weigh up which is more annoying. Like you, i'm only able to keep these masks on for an hour or two until the leaking drives me mad and i have to take it off to get some (bad) sleep. The other thing i have found is that i'm driving my wife mad with the constant fidgeting, adjusting the velcro straps and tossing and turning to get comfortable. She prefers the snoring to all of this. At the moment, i'm really thinking that it's all too hard and feel like taking all the gear back as i'm on a trial. Hope you find a solution soon.

[Bobby269]

This what helped me. http://www.resmed.com/us/assets/documen ... lo_eng.pdf

[lee_leses]

Hi:

Been on CPAP since 2005, I just recently tried the Quattro FX, so far I could not stand it at all. It leaks around my nose into my eyes and is very uncomfortable. I just got a data capable machine for the first time a week ago, the PR System One. This is the first time I had some actual control of knowing how I'm actually sleeping so I can try to do something about it!

My logic for you is first try anything you can to sleep comfortably and get your AHI down, then see if you feel better, and then see if you can find a better mask that achieves the desired results.

I recognize this is NOT a perfect solution, but you should try it.

I've used the breeze headgear for years. So far, it's the only thing I can stand that does not touch my face anywhere except for where it goes into my nose. The problem is, most of the air was leaking out of my mouth. This caused dry mouth and drool on the pillow. That's how I know my mouth was open. I just started taping my mouth shut with 3M Durapore 3" medical tape. I put chapstick on my lips first. Using the Breeze headear and the tape, I'm getting a perfect seal for the first time ever! No leaks, feel somewhat better, and AHI is between .8 and 1.8!

My old machine was locked on 12. With the auto-CPAP set for a range of 8-16, and also to AFlex, I am also sleeping much better. The machine is giving me an average pressure of about 9. Eventually I want to set my new machine to regular CPAP, rate or 12, with no AFlex, and record data to see what my AHI looks like with the machine set that way. Right now I'm just trying to feel somewhat better.

The tape is helping a LOT. So far I am not having any skin problems with the tape, or any skin problems with the nasal pillows. The seal I'm getting is unbelievable, I hear and feel no air leaking at all. I read a study that said most people's AHI improved when they taped their mouth and used a nasal interface. I'm not sure you can beat the seal.

Before I would give up, I would at least want to see if I felt better trying it this way!

Lee

[Janknitz]

The RT "helping" me has basically told me that my insurance company won't cover another mask, so she won't sell it to me. There is a "warranty replacement" that was used up after she sent me home with the wrong size. I qualify for another mask in 2 months.

Your DME is a lazy witch (sorry, I mean no disrespect to witches!) and here's why. All the major mask manufacturers have a return policy if the mask doesn't work out for the patient for whatever reason. 30 days is usually the limit, and it does require the DME to do a bit of paperwork to be credited for the mask. This is for EVERY mask, not just the first one, AND, it certainly was not your fault if the DME provided you with the wrong size in the first place.

I'd call ResMed and complain about the DME. Tell them that the DME does not seem to know how to fit you properly for a mask and they are trying to make you stick with a mask that isn't working for you and is causing you to seriously consider giving up on CPAP therapy altogether. Even better if you do this in writing online: http://www.resmed.com/us/assets/html/co ... =contactus

Major mask manufacturers also supply FREE sample masks to the DME's so they can let you take a mask home to try out before you buy. If the DME isn't offering that, it's likely the DME is selling those free masks on the side. So I'm sure ResMed would be interested in the fact that the DME doesn't have any sample masks for you to try out either.

Maybe a call from ResMed will light a fire under the DME to work with you to find an appropriate mask.

[jayk1998]

Well, that pretty much confirms what I already thought. If I knew how, I'd fire this place, but I've written them some awfully big checks.

[archangle]

Next to the power button on your S9, it should say, Escape, Escape Auto, Elite, or AutoSet. Please see which one it is and put it in your profile.

Let me use my psychic powers and predict....It's becoming clearer....clearer....I see an E....It's an Escape.

Just a little sick humor, but let us know what it said.

When did you first get the mask and machine?

See if there are any other DMEs in your area that you can use on your insurance. You've been screwed on the mask by this machine. Another DME might very well be willing to do what they're supposed to to get you the right mask. You may have to pay full price for a mask, but then you can take all your future business to them. Another DME might also be willing to give you a good price on the mask to get your future business for supplies.

You can also buy "insurance" on masks from online vendors. For instance, you pay $70 for the mask, and then add $13 or so, and you can return the mask minus the $7 shipping and the $13 and try another mask. By the way, that's the price for a ComfortGel Blue mask, the nasal mask I use.

By the way, how did you end up with a full face mask? Did you have a problem mouth breathing, or was it just a bad DME? Full face masks are a horrible choice in my opinion, and should only be used by people who can't use a nasal mask, usually because of mouth leaks. I think it's a crime to start anyone off on a full face mask without trying a nasal mask first.

Try the various tricks to see if you can get the mask you have to work. Try adjusting it while you're laying on your side. Be sure to adjust it with the full pressure on with the S9 Mask Fit function. Don't tighten it too tight. Sometimes you tense up "into" the mask when you're trying to fit it and it leaks when you go to sleep and relax. Try putting it on, adjusting it, and then trying to relax or flex your face to see if you can make it leak. Then see if you can fix the leak.

Another possibility is to sleep in a recliner.

Sometimes using a chin strap can help on a full face mask. You can make your own from a 3 inch non-adhesive Ace bandage and run it under your chin and up over the top of your head to keep your mouth closed. Cheap and easy to try.

By the way, do you know what your AHI numbers or numbers of apneas were in your sleep test?

[Pugsy]

There is a mask trial program. $14 (covers shipping to you and return).
http://www.cpaplibrary.com/mask-trials.html

Dane posts often here. Lots of people apparently have tried it and report no problems.

[jayk1998]

The machine is an S9 Elite. I don't know how I missed that.

Here's the whole timeline.

Saw regular doc, who referred me to sleep doc.
Saw the sleep doc... he ordered a sleep study.
I actually had to do 2 studies, at the first one I couldn't sleep so only got OSA diagnosis, I had to go back for CPAP titration.
Titration study went well, using a medium Quattro FX. Found that best pressure was 10cm/H2O.
Doc prescribed exactly what I had in the titration, CPAP, QFX mask in a medium.
Go to the DME, RT uses some sizing tool and decides that I actually need a small mask. Go home with the CPAP on June 15.
Fight with the small for two weeks (it doesn't even cover my mouth completely, unless the mask is pinching my nose shut).
Go back to DME. RT complains that the little sizing tool says I need a small. Reluctantly gives me a medium, which is what the doc originally ordered anyway.
Fight with the medium for two weeks, see story above. One month in now... time to see the doc again.
Doc is surprised that CPAP isn't working well, writes another script for refitting of mask and replacement if necessary.
Go to DME, who insists that the first replacement is the only one she can do, even though I have a prescription. I am eligible for a new mask in two months. She sells me the gel pad thingie to help with the leaks.

Bottom line is... DME has been no help at all. The last time I was in there, RT went on and on about how finding the right mask that fits is the most critical part, but didn't offer any solution other than... "in two months when you're eligible, we'll try another mask".

I really want this to work, but I am barely grasping at the fringe end of my rope.

[jayk1998]

Sleep study AHI was 18.7.

Here are my total numbers with CPAP:

Period: 6 months
Days Used: 36/37
Days >4hrs: 21/37
Avg. Usage: 4.1 hrs
Used hrs: 148.5
Pressure: 10.0
Leak: 6.0 L/min
AHI: 4.6
Total AI: 2.6
Central AI: 1.0

I don't know what most of that means.

[Pugsy]

There is software available to see what is really going on. I suggest you get it.
Look in Uncle_Bob's signature line. While there get the Clinician manual also.
memberlist.php?mode=viewprofile&u=38643

This tutorial will help with using the software.
http://montfordhouse.com/cpap/resscan_tutorial/

Your data off the machine tell me that you are only used the machine for 4 hours or more 21 out of 37 nights.
Of those nights you averaged barely 4 hours.
This much you already knew.
Average leak is fine but average is just a number. Over 37 nights meaningless. Need to evaluate leak on a nightly basis.
The AHI, AI an Central numbers are hourly averages. AHI being an average of all events...Apnea, Hyponea and Centrals.
Again best to evaluate on a nightly basis.

Edit: I would also fired the current DME and have my RX transferred to another DME that would work with me on mask trials. You can do this without affecting machine status. Just get masks from someone else. Find out who else your insurance might use and contact them asking what their policy is with mask trials.
Your current DME is setting you up for failure.

You need to try to figure out what is waking you up..and you need to try a different mask. Utilize the free mask trial I mentioned above. Do you absolutely have to have a Full Face mask?