Overwhelmed!!

sleeplessinthevalley wrote: . . . My next questions have to do with masks. I am assuming that this can be a very individual thing based on the shape of your face and measurements. Fortunately they let you exchange masks within 30 days if it doesn't work out. Any advice?

MASK
Sleep with mouth closed: nasal mask or nasal pillow mask (pillows my fav)
Extreme allergies with constant stuffy nose: full face mask (FFM)
Occasional allergies: both a nasal mask or nasal pillow mask and FFM to wear when allergies kick up
Skin sensitivity: choose a mask that limits contact with your skin. I use a ComfortLite 2 for this reason. I bought two covers for the forehead piece from http://www.padacheek.com/PACCL2.html By the way, I wouldn't even try this mask for along time because I thought it looked so awful, but it's now my favorite.

Keep in mind not all mask manufacturers have a 30 day warranty. Check with your DME on which ones do.

ACCESSORIES

sleeplessinthevalley wrote: . . .What about accessaries? The list of options is huge. Anything that people feel are "have to haves"? I agree that since this is now going to be part of my everyday life I should get the things that will make it more comfortable. . . .

Filters: Your APAP should come with filters if it's a good one and it looks like you're going to choose well. Mine, the Respironics AFLEX has a extra fine filter and a less fine gray filter. I change them once a month. Insurance should cover them. Be sure to have them on hand so you breath the cleanest air you can.

Hose Cover: Your DME may provide and covered by insurance (maybe if it's for rainout - which is water collecting in the hose from the room being cooler than the air going through the hose) Note - most hoses are 6 foot long. If not provided (and covered by insurance) then I'd give my business to the hose of this forum CPAP.com or Padacheek the owner of which is a member on this site and makes really nice products :

https://www.cpap.com/productpage/snuggl ... cover.html
http://www.padacheek.com/PAC_Hosecover.html Most hoses are 6ft long.

Hose Hanger: Having a hanger to control the hose from following me in bed, getting caught in my arms etc was a real plus when first starting therapy. I have this one: https://www.cpap.com/productpage/travel ... ystem.html

Distilled water: buy it when it is on sale to use in your humidifier. Forum members have lots of opinions about water; mine is to use steam distilled.

Added note: Make certain to get a new mask when insurance will replace it and that goes for all the replaceable items including hoses. I always keep the latest two to swap between when cleaning which for me is a lot less than when I began therapy

sleeplessinthevalley wrote:Thanks again to everyone. I spent the day on the phone with United Health care to make sure I understand my coverage. After the $250 deductable, which I have already satisfied, it covers 90%. I talked to some DME Reps and I think I eithert want Respironics System1 Auto with Cflex or Resmed s9 auto. I will have to wait until after titration in order to talk to my PCP to get correct wording on script. I talked to PRAXair who is on my list of prefered providers and they seemed very helpful. Does anyone have feedback on them?

First, you've got remarkably good coverage. (My insurance pays only 50% of everything CPAP related that is medically necessary.)

Second both the PR System One Auto and the Resmed S9 Auto are great machines. I'd suggest making sure you get an integrated heated humidifier to go with the machine as well. Both are full efficacy data.

S9 strengths and weaknesses:

• The S9's on-board efficacy data is much more complete and easy to access. So obtaining the software is a less critical.
• The ResScan software can be downloaded by finding posts by Uncle_Bob. He keeps links to the current download site in his signature. Most folks don't have any real problem installing and running the software. But it's not particularly user friendly. And patients are not supposed to have access to the ResScan software. Great graphs for the data though.
• Many folks swear by ResMed's EPR and EasyBreathe algorithms and say they make breathing with the machine very natural. EPR temporarily reduces the exhale pressure by a fixed amount of pressure on each and every exhalation. For a few folks, this fixed reduction in pressure does seem to adversely affect their therapy, but for the vast majority of users it does not. I had an S9 Auto for three months. I found I couldn't breathe without EPR = 2 or EPR =3, but I also never felt like breathing was natural. Then again, I "failed" at CPAP for a variety of reasons and was moved to Bi-level in December 2010.
• The SlimLine and ClimateLine hoses are comfy to use, but some folks say they are also flimsy and don't last as long as they should.
• The only way to get "rainout prevention" is to buy the expensive ClimateLine hose. The humidifier itself is not the "smart" part of the "anti-rainout" system.
• The hose comes out of the BACK of the humidifier. For some folks, this is a BIG issue depending on how their bedroom is set up and how much room is available on the nightstand/table/crate/what-have-you that they are using for the machine.
• Most people find the S9 virtually noiseless. It's natural pitch is a bit higher than the System1's and since many people over 40 or 50 have very slight hearing losses in those high registers, that may explain this.
• Concerning the ramp settings: The patient can control how LONG the ramp period is from the patient set up screen, but the starting ramp pressure can only be changed via the clinician's set up screen.

System1 strengths and weaknesses:

• The hose comes out of the top of the humidifier and is on a swivel. So the hose will swivel as you move around in bed if it needs to and it gives you more options on how to orient the machine on your bedside table. The swivel also means there is much less stress put on that end of the hose.
• The machine is fully data capable, but the on-board data is very, very limited---almost to the point of being useless. Getting the software is pretty much required if you want to actively monitor and manage your condition.
• The EncoreViewer software is the PATIENT software and it is readily available for about $100 on line. It's easy and straightfoward to use. Much more intuitive than ResScan, but also does not provide quite as much detailed information. The professional software is Encore Pro. It can be obtained from torrent download sites, but is more problematic to install than ResScan is. Except for being able to see the wave form data, there's not that much more available in Encore Pro in my humble opinion. There is also a user here (cpapdork) who is in the process of writing a web-based program that he calls Onkor that lets System One viewers look at their wave form data with the same about of detail that ResScan provides the S9 users. Onkor is FREE and it works well enough for cpapdork to have made it available to us. But he's also actively working on improving the program in a number of ways so noone should think of the current version as a "finished" product.
• The standard hose and the slimmer "performance" hose both seem to be more durable than the Resmed Slimline and Climateline hoses.
• The "anti-rainout" system is based on the humidifier's settings and works regardless of the hose used.
• The Resprionics A-Flex/C-Flex exhalation relief systems work quite differently than the Resmed EPR system does. Most folks probably can't tell a difference, quite frankly. A-Flex and C-Flex reduce the pressure a bit on every exhalation, but the amount of reduction varies from breath to breath and it depends on how strongly you are exhaling. The stronger the exhale, the more the pressure reduction. Seems like there's more variation on whether folks find Flex comfortable than there is concerning Resmed's EPR. There's a version of Flex for Bi-Paps as well. I found it highly irritating because I could detect that the increase in pressure back up to my full EPAP level occurred before I felt like I was done exhaling. But I'm really, really sensitive to such things and I really don't think most folks would be bothered by it.
• The System One is very quiet. But it's natural noise is at a bit lower of a pitch. For me, the pitch is low enough that it's in the band of frequencies where I have absolutely no hearing loss. And I'm convinced that's the only reason I notice the noise of the System One a tiny bit more than the noise of the S9. Neither one's noise level has been an issue for me at all.
• Concerning the ramp settings: The patient can control STARTING RAMP PRESSURE from the patient set up screen, but the length of the ramp time can only be changed via the clinician's set up screen.

My next questions have to do with masks. I am assuming that this can be a very individual thing based on the shape of your face and measurements. Fortunately they let you exchange masks within 30 days if it doesn't work out. Any advice?

Masks are in the nose of the wearer. Seriously. What's a great mask for Person A will be Person B's on-going nightmare.

Some tips in finding the right mask? It's kind of like finding the right pair of shoes (at least for me )

• Be patient and be willing to try on as many masks as you need to in order to find one you're happy with.
• If a mask bothers you as soon as you put it on, it ain't going to fit any better when you get it home and put it on at bedtime. No matter how many rave reviews you've read about the mask.
• If you bring a mask home (because it felt comfortable when you were trying it on), but it isn't comfortable to sleep in, don't wait too long to exchange the mask for a new one. But also be keenly aware of your DME's complete mask return policy. How many masks will they let you return in that thirty day period is important to know.
• If Mask A does not work out, try to figure out why Mask A didn't work out before moving onto Mask B. You want to make sure that Mask B doesn't have the same inherent "flaw" that made Mask A fail for you. For example, if you opt for a popular nasal pillows mask called the Swift FX for Her and it doesn't work out, it's important to sort out whether the problem is that you really don't like pillows style masks (because the pillows just aren't comfy on your nostrils in spite of being correctly fit) or whether the problem is that the Swift FX just isn't the pillows mask for you---the pillows don't bug you all that much, but you feel like they could be at a better angle or that the mask needs to be more stable. In the first case, you need the next mask to be a different TYPE of mask. In the second, you probably just need the next mask to be a DIFFERENT mask of the same sort.
• And here's my own impression of what you want to know and consider about the various styles of masks right up front---before you make that first decision about which mask to start with:
  
  • Sort out whether you breath through your mouth first. If you do you need to see if you prefer to deal with FFM issues or deal with finding ways of keeping your mouth shut all night long---chin straps, PAP caps, tapping, and training yourself to not open your mouth. It's your choice and there's not a right answer. Because of their size, many people have real problems with leaks when they are using FFM. But they can be tamed by users who want to make them work.
  • Nasal mask vs. nasal pillows: They both have their strengths and weaknesses and they both have their fans.
    
    • Pillows: Fans (such as myself) will tell you the best thing about pillows is how little mask there is on your face. Most folks with glasses can easily wear their glasses and the mask at the same time---useful if you like to read in bed or watch tv in bed. (*sigh* some of us can't do those things because of insomnia.) And you can scratch the top of your nose without any problem. Since it doesn't go OVER the nose, there is usually less claustrophobia. But they do seal themselves right up against your nostrils, and that can create it's own different set of anxiety about breathing freely. Once you are used to them, there is little or no sense of any air blowing up your nose. But on the downside, some people have real problems getting the pillows to stay sealed all night. Sore nostrils are common among new users. And DMEs frequently misfit the pillows by shoving them up your nose. And some of the pillows themselves seem to have really short lives and have to be replaced far more frequently than many insurance companies think they do.
    • Nasal masks: They are more stable than pillows are for many people. If you can't stand the thought of something touching and sealing against your nostrils all night long, the nasal mask may be a better choice. Some people like the feeling of air blowing through the hose and onto their nose. Others don't. Usually there's less of a problem with sore nostrils, but if the mask has a forehead support, then there's always the potential that the support will cause problems with sores up there. There are solutions to sores on the bridge of the nose----mask liners and forehead pads are both readily available. My vague impression is that nasal masks are the ones most commonly used for titration studies. And my guess is that for the folks who used a nasal mask without any serious problems during their titration study, many of them go on to chose a nasal mask and find it works reasonably well.

What about accessaries? The list of options is huge. Anything that people feel are "have to haves"? I agree that since this is now going to be part of my everyday life I should get the things that will make it more comfortable.

For me, the following are critically important accessaries for the stated reasons:

• Software for the machine. Without data, you can't tell whether the therapy is effective. And while we all hope (and expect) to feel better shortly after starting CPAP, many of us don't. Decent AHI numbers from the data can be a powerful motivator for continuing therapy if you wind up having a more difficult than normal adjustment to therapy.
• Hose cozy. Not only does the hose cozy help prevent rainout, it also takes away the medicinal look and feel to the hose. I have two so I can swap them out when I feel like I need to without doing a load of laundry. Padacheek (member here) makes very thick super-duper hose cozies that I think I could take to the arctic and still not get rainout. My other hose cozy is much thinner. It's easier to get on the hose, but provides less insulation on those cold nights in winter. (We keep our house at 60 at night in the winter.)
• Mask pad. I use the FX for Her. It has a top strap made of silicone that kept getting caught in my hair. And where the backstrap is looped into the main silicone frame forms these annoying little "bumps" that I found highly irritating to sleep on. I asked Padacheek if she could design a pad that covered the full silicone part of the frame of my mask since she had nothing on her web page at the time. She was happy to design it. I believe she's now got it on her web page. The full pad keeps ALL the silicone of the frame from touching me and the top strap no longer gets tangled in my hair. Also makes the mask look and feel far less medicinal. For just about every mask, there will be some strap or contraption somewhere that is bound to irritate you in some way. And Padacheek will likely have an answer. Or will be able to design a solution if you let her know what it is you need done.
• Nasal pillow cozies. Also by Padacheek. These minimize the amount of silicone content from the pillow barrel an my upper lip. Literally the only silicone that touches me is the top part of the cone where it seals against my nostrils at night. And this makes a huge difference to me. Also helps prevent rainout from forming from my own exhaled air hitting the cold nasal pillow on those cold nights.
• Chapsticks of various sorts, a moisturizing skin cream without petroleum, lanisoh, saline nasal spray, and a sinus rinse bottle. None of which really are CPAP accessories, but all critically important to me. The chapstick has been an on-going issue. Finally my PCP contacted a local (NON-chain) pharmacy and asked them to make me up a sample of a lip balm with no petroleum in it that would be long lasting. It's expensive: 6 tubes for $35. But I only need to use the special stuff at night before masking up. And it's worth it given that severely chapped lips has been my Energizer Bunny side effect that just keeps on going .....

Some folks would add a hose management system to that list. For me, I'd rather run the hose under the covers since I tend to sleep with my head under the covers. (And CPAP means I never have to come up for air, like I had to pre-CPAP.)

If you are a mouth breather and you want to use a nasal mask or a nasal pillows mask, then chinstraps, tape, PAPcaps, etc. become important accessories to have.

The statistics of those who need the therapy and yet are noncomplient is scary. I want to be one of the success stories! With my test results I need to be using this.

Again any and all advice is very appreciated. The more I know the more likely I will be successful!

Yes, the statistics are scary aren't they.

The keys to success seem to be:

• Attitude and determination. If you decide that you WILL make this therapy work and you stick with it long enough, then eventually it will. I say this as someone who's still working hard on making it work---seven months---and who is not yet feeling better on most days. But some days I am.
• Knowledge and a willingness to learn. The more you understand about your OSA and your CPAP therapy, the easier it will be to keep yourself motivated---particularly if you run into unanticipated problems.
• A willingness to ask for help. Here and at your sleep doctor's office and at your DME and even at home when you just need somebody else to do things for you because you're dealing with the inevitable CPAP issues.
• Patience. OSA doesn't develop overnight. And for most of us, CPAP doesn't "fix" the problem overnight---at least in the sense of magically making us feel better---as in waking up refreshed and ready to seize the day every single morning.
• Humor. Something I sorely wish I had much more of.

Here is my list of must haves:

Hose cover for my climateline hose

Hose clips to attach the hose to the side of the bed so I don't pull it off the table.

Barrel cozy for my Swift LT for her mask.

Lanosih to protect sensitive skin when I first started on CPAP. I have not used it in months now.

Water bottle to hold distilled water next to night table. I use a cheap squeeze bottle. Its much easier to handle than gallon jug.

Pur sleep or any essentials oils

Fan to provide white noise.