I am ready to give up

Hello Everyone,

I wished I had searched for a forum like this 9 months ago when I took
my first sleep test. I will try to keep this short but I want to include
as much pertinent info as possible.
Nine months ago I went to my family physician because I thought I was
choking in my sleep and it was getting bad, he sent me to a sleep center
for a sleep test. I knew nothing about sleep apnea or CPAP and the sleep
center did not explain anything, they had me watch a 15min video and
that was it.
During my first test I went to sleep right away with a nasal mask but
woke quickly when my mouth would open (I have always been a mouth
breather), the tech switched to a full face and could not keep it from
leaking so they switched to another and really tightened it down so
tight it left marks for most of the day but I was told that was the only way
to stop the leaks. My insurance company sent a home health care provider
to my home and set me up with the REMstar Pro 2 C-Flex CPAP, REMstar
Heated Humidifier with bag, hose and manuals and the Respironics
ComfortFull 2 Full Face CPAP Mask (the same as used in the sleep test).
I tried this setup for three months and lost more sleep due to leaks and
discomfort so my Tech said I needed the large (even though she was the
one who originally said I was a medium and I had to wait three months to
get a new mask or the insurance would not pay. So for another three
months I tried the large but it was just as bad so I asked the sleep
center for help and they said they only use Respironics ComfortFull 2
but they did have a demo FlexiFit 431 Full Face Mask that I could borrow
so I tried it and it worked better than the ComfortFull 2 but still was
uncomfortable and leaked enough that I lost sleep using it.
Well the home supply called on my 90th day (insurance will pay for
another) of use and said they special ordered a mask that is new (I dont
remember the name nor can I find a link to one) and seals the whole face
inside it with one large seal so I said lets try it.
I used it one night and when this mask leaks it makes a very loud
whistling noise like tea kettle whistle, it kept everyone in the house
awake so I called the Tech and she returned with a slew of nasal/pillow
masks and said this is my only option and I would have to find a way to
keep my mouth closed. I chose the Resmed Swift Mask and after fitting it
and putting on a chin strap I fell asleep fast and awoke the next
morning in the exact position I fell asleep in (this never happens) and
I woke with a sense of alertness that I have not had in years, no boost
in energy but I felt like I had acualy had a restful sleep and my mind
was very alert, unfortunately my second night (last night) I did a lot
of tossing and turning causing the chin strap (just a single strap that
goes under the chin to the top of the head) to keep moving my swift mask
harness causing the mask to move around.
I really want to get this setup to work and have the CPAP work for me
but I am so frustrated and really dont have any other options other than
surgery and a dental device that cost 1500.00 that may not work. Luckily
I have insurance that has paid 60% of these items or I could not afford
them but even the 40% I pay adds up and I really dont want to buy masks
that dont work for me. I think the Resmed Swift Cpap Mask will work for
me if I could keep my mouth shut but the single strap chin strap has to
be very tight to keep my jaw from dropping and it inter-fears with the
masks fit.
Any suggestions on what to try next to keep my mouth closed?
Is there another full face mask that I should try?
I apologize that this is long and boring but I really want to find
solutions that will work for me and cant get much help from my home-care
Rep.

mouth taping (seriously) or polident dental strips to 'glue' the mouth shut during night - do a search on mouth breathing and you will find quite a bit of info on this - good luck - you are almost there!

Guest is right. Here ya go, buckeyered:

Links to: Mouth leaks - Air Leaks - Tape - DIY Guard

The Swift interface and those like it are probably the most difficult interface for a newbie cpap user to use while getting used to cpap.

The incoming air is often cold even with a humidifier use, the interface more noisy compared to others, things that makes it all much more difficult to fall asleep with. Once you are accustomed to cpap, then they are not so bad.

The problem is the local DME tries all their crappy interfaces on you and tell you that is all there is... bunch of liars they are.

I'm not going to send you elsewhere but those links from RG are good ones for different options (look at her, she's getting younger using them) so you might want to browse through and read them when you can, but taping your mouth or using a good Full Face mask like the Resmed UltraMirage Full Face are about your best choices that really work long term use.

For the mouth breathing: Using a good nasal interface and taping your mouth with 1" wide paper medical tape does work, I did it for several years. You cut the tape about 1-3/4" long then fold back over one end about 1/4" making a quick removal flap. It goes over your mouth horizontally and most people don't have to tape the mouth opening completely shut. The tape trains you to keep your tongue in the hard palate.

Unlike that Respironics Comfort FF mask, the Resmed version uses the CPAP pressure to help make the cushion seal with your skin so it doesn't leak as much. They only really leak when you push them out of kelter, you learn after a while how to sleep where that doesn't happen. This means you don't cinch down on the straps to stop leaks like that tech did where it becomes uncomfortable. I wear my UMFF loose, if it leaks who cares! I'm not going to loose any sleep over a leaking mask.

While it is true a FF mask can leak more than a nasal mask, it doesn't have to, nor does really matter all that much with the particular machine you are using. It is however, critical you get it sized correctly. Don't rely on what the sleep lab determined as being the correct size, they don't care about your comfort only getting the study completed so they can move on to the next patient.

My suggestion: Get a properly fitting Resmed UltraMirage FF mask so you can start with baseline therapy. You'll use this mask when you have a cold or are congested or just want a comfortable mask to use.

Then set that Pro2 up yourself (DME's don't know their head from their butt when setting up cpap machine) use the Ramp and get the card reader and EncorePro software for it and take control over your own therapy.

The machine you have is actually a good one, it reports all sleep data (pressure, hypoapnea, apnea and snore) set up properly it is as good if not better than any autopap out there, but it all depends on your pressure requirement. Set the low pressure to 5 or 6cm, then the high to your last titration and use up to the 45-min Ramp timer along with a Cflex setting of 2 to start out with. Once you land on a mask your comfortable with and can fall asleep, you can shorten the Ramp timer.

Fact: You do NOT need a prescription to purchase a cpap mask. You can buy them yourself on-line. From the sounds/size of your deductible, it may even be cheaper for you to bypass that DME. The local DME jacks up the price 3 fold then tells you your portion is x percent.

CPAP.COM has about the best prices you'll find when you consider free shipping and usually no tax, depending on which state you live. Local DME's will charge you $300+ for a mask you can buy yourself on-line for $100 or so.

Buckeyered,

Do you know what pressure they have you set up for?
And that wasn't boring. It was informative. It's really hard to try and help someone when they DON'T give as much information and background as you did in your post.

Don't give up!
Lots of people here with lots of different experiences both with getting CPAP to work and with different insurance issues.

The fact that the technician strapped the mask down so hard that it left marks all day, while not surprising, shows a lack of understanding about how this stuff all works.

I would also vote for trying the nasal mask with mouth taping (or glueing). This has worked for a LOT of people here. And if it trains you to keep your mouth shut then so much the better.

Until three days ago it was set at 12cm but the original prescription from the sleep center was suppose to be 14cm, when I complained to the Dr. that I was not getting enough air he called the tech and she came out and told me she set it at 12 and not 14 by mistake.
It is odd to me that there are nights that it seems the CPAP blows a lot of air and almost empties the humidifier (set at 1) and other nights it does not seem to put out much at all, like last night and the night before, it did not seem like I was getting near as much air as I did on my one good night three days ago and my humidifier water level has only dropped a little in two days, when I ask my Tech about this she just says to see the sleep center and that the CPAP blows 14cm all the time (except for ramp)

Anonymous wrote:The Swift interface and those like it are probably the most difficult interface for a newbie cpap user to use while getting used to cpap.

The incoming air is often cold even with a humidifier use, the interface more noisy compared to others, things that makes it all much more difficult to fall asleep with. Once you are accustomed to cpap, then they are not so bad.

I can hear Linda snickering now - There goes SB again about his Swift.

I don't have wide experience like it sounds "Guest" does which means "Guest" must be a provider (otherwise how would guest know other than the way I do which is through experience and by reading the boards and forums?) so I won't make a wide sweeping generalization but in my personal experience, and what from I have read from some others, the Swift was easy for (understanding that with OSA and any interface "easy" is relative) me to adapt to. It is light, non-intrusive, allows me to wear my glasses, seals well (with some tinkering), keeps my nasal passages more open (something a non-pillow interface doesn't do), permits side sleeping (for me at least) and makes me feel better when I use it compared to other interfaces (so far).

I found myself mouth breathing and felt crummy because of it. I began taping (using 2" wide Durapore and Micropore) and it worked very well for me. I now use Poligrip dental adhesive strips and they work equally well as tape without the occasional pain and skin irritation of tape. Sometimes I get tired of the poligrip strips and go back to tape but I don't mouth breath.

David

buckeyered wrote:It is odd to me that there are nights that it seems the CPAP blows a lot of air and almost empties the humidifier (set at 1) and other nights it does not seem to put out much at all, like last night and the night before, it did not seem like I was getting near as much air as I did on my one good night three days ago and my humidifier water level has only dropped a little in two days, when I ask my Tech about this she just says to see the sleep center and that the CPAP blows 14cm all the time (except for ramp)
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Your RT or tech should have checked the unit with a manometer to confirm that it actually is putting out 14cm wc pressure. That doesn't mean that they did. You can do this yourself. There are manometers available from cpap.com under cpap accessories for about $40 and up or you can make one for yourself. Search for manometer and you should find links describing how to make one. Also, do a Google or Yahoo! search for manometer. You'll find lots of links to how to make a home made manometer. They are used for checking the pressure on propane and LP devices as well. It should cost you about $5 to make one if you have to go buy all the materials and it will be just as reliable as the purchased ones. The only thing that you dont often see in the how to guides is when using a U water column manometer, you need to multiply the water rise by 2.

Having said all that, it is likely that your unit is functioning correctly. The difference in the humidifier water level is likely showing you that your mouth is opening. It is easy to completely empty a humidifier if you are mouth breathing. If you can't control the mouth breathing, go back to a full face mask. Even with the ff mask, you will see a considerable difference in the water level in the humidifier when mouth breathing. But at least you are still getting treatment.

I recommend the mask sizing guide on cpap.com, https://www.cpap.com/cpap-mask-sizing.php for guidance on a mask that will fit you appropriately. Also, you might give them a call and discuss options.

Good luck! Don't give up. Unfortunately, the level of service you have received seems to be typical in the industry. No wonder there are so many compliance problems. As others have suggested, if your unit supports full SmartCard data, the software is well worth the investment. It will show you information regarding your apneas, hypopneas, and mask leaks. If your leaks aren't "major" and they don't make squeeking noises that keep you up, you may not have to fix them. On the other hand, you can have "major" leaks during the night and not even know about it unless you have the software.

I just bought the manual on eBay to the REMstar Pro 2 C-Flex CPAP so now I guess I need to get the Encore Pro Software & Smart Card Reader but 199.00 hurts, is there a cheaper reliable place to get it? I see that the price is much more with the software is there a download available for the software so all I need to buy would be a reader? I want to use My Encore but I guess I need Encore pro loaded for it to work. I found links to Encore pro but I guess it is no longer a free download. Thanks for all the help.

Maybe your ramp is on. Turn off the ramp and see if that helps.

I very seldom use the ramp since it is set way low and I have to struggle to get air when I use it.

buckeyered wrote:I just bought the manual on eBay to the REMstar Pro 2 C-Flex CPAP so now I guess I need to get the Encore Pro Software & Smart Card Reader but 199.00 hurts, is there a cheaper reliable place to get it? I see that the price is much more with the software is there a download available for the software so all I need to buy would be a reader? I want to use My Encore but I guess I need Encore pro loaded for it to work. I found links to Encore pro but I guess it is no longer a free download. Thanks for all the help.

From Bill "Nighthawkeye" Posted: Tue May 09, 2006 7:33 pm Topic Link

NightHawkeye wrote:...you can save a few dollars by buying the card reader for $30.80 from:
SmartCard Link
and then buy the software for $99 from:
Software Link

If you search through prior posts you'll find people have been very satisfied with the 2factors card readers.

Regards,
Bill

David

Snoozin' Bluezzz wrote: I can hear Linda snickering now - There goes SB again about his Swift.

Who Me?

OK, OK, I am a relative newbie--so I have only used the CPAP for about 2 months now. I have used 3 different mask/interface systems, and am waiting for the 4th (which supposedly will be here Wednesday....)

I started with the Mirage Swift nasal pillows size Medium and the Adam style chin strap that is a black strip of fuzzy fabric with a bigger circle under the chin. I, too, had the chin strap slippage with the Swift. However, as a both-sides-sleeper, the chin strap wasn't the only problem. My somewhat long, silky smooth hair ( ) was the problem.

ResMed, the maker of the Mirage Swift, has a 30 day return policy for new masks/interfaces. Thank you again, ResMed. The Swift is a nifty little interface, but just did not work for me. Every time I turned, the Swift dislodged. I was waking up about 7-10 times a night to readjust. Since my sleep study showed that I awoke 7-10 times a night, where was my benefit?

My suggestions:

I would have:

1. Taped my mouth shut with paper medical tape (as I found posted on a forum--Thank you to the poster, if you are reading this.)--I use 2" over chapsticked lips, pulling the lips in as the tape is applied. I have found that I must tape all the way across my mouth, as I will leak air from the sides/corners if they are left out.

Note: I haven't tried the denture adhesives yet.

2. Tried another model of chin strap--which I did, buying the Tiara Ruby myself. It worked well, but I sweat a lot and am often hot at night. This was another neoprene-type layer and it smelled a bit funny (even after treatments with no-odor molecular-level products which made a 90% improvement).

OK, now we are getting to the good stuff, requiring more adaptation of the whole shebang!

3. Had I kept the Swift and the Adam-style chin strap, I would have tried some cord controller-type velcro strips cut into appropriately sized pieces to connect the two. I may have had to find a way to sew or glue them to the Swift strap, but I think they would have held to the Adam chin strap fabric.

BTW, non-sewers: There are tubes of fabric glue/adhesives that are flexible and washable when dried--ask at the fabric shops and use as small an amount as possible. And do not get any anywhere it is not wanted and allow it to dry. (Any resemblance between this product and the adhesives used for sleep study leads may be purely coincidental....)

4. I did try the larger nasal pillow assembly and found that it helped to cut the number of leaks. Many of us have posted similar findings with various nasal pillow assemblies and models.

5. Because I have high cheekbones and fleshy ones, too, the Swift straps left some marks (not really bad, but they were there). I would have tried some of the fleece or foam pads that others have recommended had I kept the Swift. A search of the forums for the Swift will give one more ideas.

I promise that I will not Snicker (good one, Linda), I mean "snicker" about anyone's comments on the Swift. While not for me, it is a good product. However, one should never say never. I may have a Swift of my own yet.

Buckeye, hang in there. And hang with us, we'll help get you where you need to be with your therapy. You have a good machine, so that's not going to be a problem. As others have said, you need to:

1. Get the mouth breathing under control. Either with taping or with the Resmed UltraMirage Full Face. Chin straps do not work.

2. You are using lots of water from the humidifier because of the mouth breathing.

3. Ramp: With the setup manual that you just ordered, set up your ramp to pressure 8. Set the time of ramp for 15 or 30 minutes. (I believe you can set both the ramp pressure and time with the Pro 2).

When you feel lots of air blowing, hit the ramp button and adjust your mask. You should be able to go back to sleep then. It will ultimately be automatic for you.

4. Also, you can try stabilizing your current masks with the "pantyhose strap". It's just the leg of a stretchy woman's or little girl's "tights".

Put on your mask, and gently tie the strap around the mask and your head. Be sure not to block any of the exhale ports. The strap is very stretchy, so just tie it enough to help hold the mask to your face. That way you won't have to over-tighted the mask headgear. Maybe that will help avoid mask leaks.

5. Ultimately, you will want to buy the software - it will show you exactly how you are doing, numberwise. But how you feel every day is more important.

Good Luck