Completely Lost

[rangerdave]

Let me try to keep this short...

Hello Everyone, first post and a new CPAP user. Grrrrrr
I went for a couple of "sleepovers" and was told I stop breathing 50+ times an hour. Doesn't sound so good. All I know is I suffer from headaches during the day. Oh, and high blood pressure. The doctor there writes a prescription for a 30 day trial of a CPAP machine and I am to pick a place where I'd like to get this machine. So far all is good and I'm happy I may have a solution at hand. I go to get my machine and I receive a basic CPAP intro on how they work. I am supposed to go back in 1 week so they can download data and send it to the doctor. After the first week of trying the machine I found that other than the awkwardness of wearing it, it wasn't so bad. Well, they downloaded the data and told me the mask leaked to much so the test is inconclusive. Try another mask and the fun begins...I'm on my 5th mask in 3 weeks. They all leak making the results inconclusive. When I talk to them about it, all I get is "try another mask" and off the shelf comes another mask. Is it really this Unscientific?? The mask I have now is the worse one yet.
To be honest, the problem is me. I know absolutely NOTHING about CPAP..zero. I don't know what to ask or what to expect. Last night I'm trying to adjust the mask so if I move my had even slightly, I don't feel the air whistling out the side. I lost it..ripping it off and chucked it. It's been 3 1/2 weeks and I can't wear it for 2 minutes without failure. I am angry at the supply store as well. Hell, I could go in and grab masks and try them at random. I'm looking for support...a proper fitting maybe?? How does strapping a mask on your face while standing in a store, without air pressure, even begin to emulate what will happen lying down at home once the machine starts pumping.
I just feel rushed to get this sorted out and it's stressful. I know nothing about it and I feel like I might as well be going to home depot to pick out masks.
So, tell me straight. Is it me? I packed up the machine and have it in my truck so I can drop it off on the way home. I want to have the prescription sent to another supplier and start this test all over again.
Dave

[Bill44133]

Hi Dave, and welcome to this forum. Finding the correct mask for you is the toughest part of this therapy, and every one is different.
I was given one mask and told I could trade it out 1 time in 30 days. I ended up with 5 different masks, paid for 3 out of my own pocket.
I started my therapy on April 30, 2013.

It is very important to make sure that you are washing you face before you put your mask on before bed time. A clean face will help prefect the seal.
It is also important to make sure you are using some type of baby wipes to wipe the mask down in the morning.
This therapy is worth every bit of effort you put into it.

I wish you good luck!

[Julie]

http://maskarrayed.wordpress.com/what-y ... me-part-i/

One place to start...

When you go to try masks on, make them let you lie down (maybe bring a pillow) and turn from side to side wearing them, plus they should knowledgably fit you not only for size but for mask specs, i.e. something like the Quattro FX or Air needs particular care about fitting, not just throwing on and tightening.

Cpap.com has the most choice and best prices as well, and lets you try out masks for a small fee. Which ones have you tried so far? What machine - full name and model # (which is often on the bottom) do you have and what are your settings?

[Pugsy]

There are some videos on a few mask fittings here at this website
http://www.cpaplibrary.com/masks.html
all in one spot so you can watch several brands. It doesn't cover all that are available but it does come most of the newest and most popular now.
http://www.cpaplibrary.com/masks.html

What masks have you tried and failed with?
Are they the masks that cover both the nose and mouth or the other that just interface with the nose?

[robysue]

rangerdave,

As others have said, it takes a while for many people to find the mask---a mask that is comfortable enough to actually sleep in and that seals well enough all night long to keep the leaks under control.

I want to address a couple of other points you make:

To be honest, the problem is me. I know absolutely NOTHING about CPAP..zero. I don't know what to ask or what to expect.

Well, that's a problem that you CAN fix. Start by reading here. If you don't even know where to start, start by reading the current posts. Then spend some time reading through a few of the sticky threads at the top of the forum.

You'll find out that you are far from alone in having real problems finding a mask that works. You'll find tips about mask liners. You'll find tips about the need to keep the face good and clean. You'll find tips on fitting just about every mask. But you'll also find out some quality information about what OSA is, how CPAP addresses the problem, and how to understand the data on your sleep test report and how to understand (and use) the data your machine records each night.

You might find my blog entry Understanding the data in your sleep test useful. You might also find [url=http://adventures-in-hosehead-land.blogspot..com/2012/08/data-available-on-resmed-s9s-lcd.html]Data available on the Resmed S9's LCD[/url] useful.

I am supposed to go back in 1 week so they can download data and send it to the doctor. After the first week of trying the machine I found that other than the awkwardness of wearing it, it wasn't so bad. Well, they downloaded the data and told me the mask leaked to much so the test is inconclusive.

If the DME can get the data off your machine, so can you. But we need to know what kind of machine (both make and model) you are using. My guess is that you will feel a bit more in control about therapy once you can look at your own data rather than having to rely on the DME to download it for you. And that sense of control is important: Feeling like CPAP is something you are choosing to do because you know it can (and will) make a big difference instead of feeling like CPAP is somthing the doc and the DME are doing to you can help tremendously when it comes to long term "compliance"---i.e. using the machine every night, all night long.

Last night I'm trying to adjust the mask so if I move my had even slightly, I don't feel the air whistling out the side. I lost it..ripping it off and chucked it. It's been 3 1/2 weeks and I can't wear it for 2 minutes without failure.

You are NOT the failure here. If a mask is not working, it's not working. But, alas, there's a lot of language thrown around by DMEs, sleep docs, and insurance companies that sure make it sound like all the problems a new PAPer faces are somehow the PAPer's fault. Don't buy into it: As long as you are making a sincere effort to find a mask and use the dang thing every night, you are doing your part.

I am angry at the supply store as well. Hell, I could go in and grab masks and try them at random. I'm looking for support...a proper fitting maybe?? How does strapping a mask on your face while standing in a store, without air pressure, even begin to emulate what will happen lying down at home once the machine starts pumping.

You've hit the nail on the head here: Trying a mask standing up without pressure has absolutely NOTHING to do with how well the mask is going to fit when you are lying down and the machine is blowing air at your full, prescribed pressure setting.

I would suggest this: Next time you're back at the DME bring your machine and long hose with you. If you have a yoga mat or a camping sleep pad, bring that with you too. If you feel comfortable enough with the idea, also bring your pillow. Politely, but persistently tell the DME you need a place to plug your machine in and a place to roll the mat out so that you can properly try the masks on and check for leakage. They may look at you as if you are crazy, but at least you'll avoid the kind of disaster you're dealing with now---a mask that you can't even wear for 2 minutes in your own bed because the thing leaks like sieve once you lie down.

So, tell me straight. Is it me? I packed up the machine and have it in my truck so I can drop it off on the way home. I want to have the prescription sent to another supplier and start this test all over again.
Dave

There's nothing that says the DME that supplies the mask has to be the same one that supplied the machine. If your current machine is one that records full efficacy data, it may be best to keep the current machine and inform the DME that other than continuing to pay for the machine, you will no longer be using them for masks because of lousy service.

[skram]

The above posters have given good advice to check out. Also, if you look on YouTube for TheLankyLefty27, he has good videos and review of the masks as well as tips on fitting them. Some masks seal better with less tightening and some better with more - and some depend on the order you tighten them, or when you should turn on the machine during the process.

I'm thinking you should try a new supplier. If they aren't giving you proper support now during the sales process, they never will after the sale. You need someone who listens and actively assists during this process.

When my father-in-law finally let us convince him to move forward, my wife and I went to 4 different suppliers to find out what needed to be done and to ask some questions. I quickly found out why he hadn't moved forward initially. When we talked to the supplier he had, it was confusing and communication was poor. Of the four, we found that only one of them gave us a good feeling that they would be able to work with him. We needed someone personable and patient as he can be stubborn. It worked out well, but, unfortunately, she left the supplier and service had gone downhill. It's hard for us to help him out as we are in a different city.

Since them, I've been diagnosed and luckily the first sleep centre I dealt with has been great, so no need for me to look elsewhere at this time. Just wish they had an office in his city.

[library lady]

Dave, I'm a new CPAP user as well, I got my machine a week ago today. I had a terrible week last week with a mask that leaked constantly and sounded like a whoopee cushion ... my DME was not much help. I researched everything I could find on the Internet, and finally went back to my DME and got some RemZzzz mask liners. No more leaking problems, and I now sleep all through the night, usually without adjusting the mask. The RemZzzz are one-time use disposables, so I've ordered some Padacheeks liners that I can wash and reuse.... go here.... http://www.padacheeks.com, or google mask liners and look for others, I think the CPAP store will have them too.

[rangerdave]

First off, thank you to everyone who has so quickly responded to my post and offered up fantastic help and suggestions. Me not listing the equipment I am using was kind of silly. Here it is...

ResMed S9 serial #23121939681 It has the humidifier unit and heated hose. The doctor has prescribed a 7.0 setting.

The mask is currently the ResMed Mirage Quattro.

I have tried masks by Philips, Fisher and Paykel and 2-3 by Resmed. Sorry I can't list the models.

As to be clear, I have not purchased anything yet. This is a trial that was ordered by the doctor which I believe the idea is to confirm it helps plus nail down my settings. The unit I have is a loaner. This is kind of why I'm stressed, I feel like I have 30 days to confirm my equipment. Fortunately, between the government assisted devices program and my company insurance I will not be out of pocket BUT I want to get the right equipment or it's a complete waste of time and money.

I think my next step is to call the doctor's office and explain what's been going on. See if I can get a prescription sent somewhere else. Somewhere where they will take time to try to fit me properly. I also need to read...read...and read some more. I need to educate myself so I can help myself. I wish I could have done this part BEFORE I got the machine and the clock started ticking on the trial.

Thanks again for the help and if there is some pertinent info I'm leaving out please let me know.
Dave

[Pugsy]

The serial number doesn't help much.
What does it say up by the on/off button?
Escape
Escape Auto
Elite
AutoSet
those are the model choices.

Where are you located? If not in the US then some of the DME ideas we might offer won't necessarily be what you can do if you are elsewhere in the world.

The Mirage Quattro is a full face mask..covers mouth and nose...is that the only type of mask you are trying or having you tried something that just covers the nose?
Do you have nasal congestion issues and can't breathe through your nose?

[rangerdave]

The machine is an Elite. And yes, I always have some congestion. When on a nasal only mask, I just end up opening my mouth while trying to breathe.

UPDATE: I called the doctors office and explained the situation. They will resent the prescription out anywhere I choose. I called another DME(?) close by and talked to a guy there. He has promised I'll get proper fittings...lying down with air pressure. I asked about the CPAP machine and he said most likely a Philips machine with autoset...all I know is the doctor prescribed a 7.0 setting so I have no idea what autoset does. I made an appointment for Feb 18. I have a week to read!
Dave

[paradoiley]

You mentioned Assistive Devices Program.

Are you in Ontario? The rules are different here, in good ways and in bad.

Much of the advice here for dealing with your DME will not apply to you.

Where are you in Ontario (assuming I'm correct)?

[skram]

The machine is an Elite. And yes, I always have some congestion. When on a nasal only mask, I just end up opening my mouth while trying to breathe.

UPDATE: I called the doctors office and explained the situation. They will resent the prescription out anywhere I choose. I called another DME(?) close by and talked to a guy there. He has promised I'll get proper fittings...lying down with air pressure. I asked about the CPAP machine and he said most likely a Philips machine with autoset...all I know is the doctor prescribed a 7.0 setting so I have no idea what autoset does. I made an appointment for Feb 18. I have a week to read!
Dave

Sound like you found a better supplier. Hopefully they will followup on their promises.

The autoset means that the machine will increase the pressure if it finds you need it. A fixed one will set your pressure at 7 and leave it there the whole night. The auto will increase the pressure if it needs.

I did a lot of reading before going to my appointment and it did help a lot. There is still lots I didn't (and still don't) know, but it definitely helped. I don't like going into situations blind (particularly if money or nerves are involved), so tend to research things as much as possible. Sometimes so much it annoys my wife!

Since my sleep clinic was really good and provided the right equipment from the start, I probably didn't "need" that much research, but it did make it easier and made me less nervous about the whole process.

[jzap]

Hi Dave,

One more thing to consider is that. for some mask designs, tightening the straps too much will make a mask leak more. Many masks have a silicone rubber seal that rests against the skin and "inflates" with pressure from the CPAP to make the seal. It won't seal at all if the CPAP is not running. It floats like a hovercraft on its flotation skirt, and tightening the straps too much crimps the seal and causes leakage. I don't know if this is what is happening to you, but you may want to consider loosening the straps and see what happens.

[rangerdave]

Hi Dave,

One more thing to consider is that. for some mask designs, tightening the straps too much will make a mask leak more. Many masks have a silicone rubber seal that rests against the skin and "inflates" with pressure from the CPAP to make the seal. It won't seal at all if the CPAP is not running. It floats like a hovercraft on its flotation skirt, and tightening the straps too much crimps the seal and causes leakage. I don't know if this is what is happening to you, but you may want to consider loosening the straps and see what happens.

That makes perfect sense and I never thought of it. The mask is actually killing the bridge of my nose so I may have to tweak it a bit more. Thanks!

[Julie]

But are you in Ontario? Most people here respond re dealers and insurance in terms of U.S. knowledge and experience... if you are up here, it changes a lot.