Lotsa questions/frustrations

Hi,
I hope this post doesn't sound too whiny, but I really want to make this work. I've had a CPAP machine for 3 weeks now. When I did my initial sleep study, I was told that my AHI was 47 - pretty darn high. In the three weeks that I've had the machine, I've had my DME tech out to my house about 4 or more times to change masks, see about changing pressures, etc.

I'm having a really difficult time finding a mask that is comfortable at the high pressures that seem to be required for me. Originally, the ResMed S9 AutoSet machine was set to start at 5 and ramp up to 9 over 25 minutes (CPAP mode). My DME tech told me that we need to keep the AHI number reported by the machine for each night below 5. At the original pressure, I was seeing AHI values between 10 and 11. This is with a Mirage Liberty Mask (nasal pillows and compartment covering my mouth. She came back and put the machine in AutoSet mode, which will ramp up as before, but the pressure will vary after that, depending on what the machine thinks I need. She set the range to between 9 and 20, the maximum for the machine.

The first night, after that, I thought the machine was going to blow my face off. The highest pressure I saw being used was 17. The reported AHI number that night was 4.2. There were a LOT of leaks, no matter how I adjusted the mask. Whenever I would fall asleep, the pressure would be cranked up - I was able to breathe, but I got almost NO sleep because it would wake me up - exactly what my brain does when I'm not using a CPAP. So, I went online and got a copy of the clinician's manual to learn how to adjust it myself.

I reduced the maximum pressure, but even at a pressure of 13-15, I'm still waking up and having a lot of problems with the nasal pillows on the mask leaking. Also, the AHI numbers are back in the 10-11 range.

I don't know what to do. I haven't tried a full face mask yet, but I'm thinking of doing that. I think my DME tech is getting irritated with me and I got the impression that she doesn't want to see me again until she comes out to download the data from the machine so my insurance company doesn't think that it's wasting money on this. I'm thinking about getting a copy of my Rx from my Dr. and just buying masks myself until I find one that works for me.

I guess my questions are:

1) Although AHI numbers in the 10-11 range are better than what I was seeing, is this low enough for me to see benefits of more energy, lowered BP (I have elevated BP), lowered risk for glaucoma (common in my family)? I feel a little better than before I started using it, but I still get really sleepy and tired by the afternoon.

2) Will I catch any flak from my insurance company, DME, or my Dr. for tweaking the clinician settings myself? I hope not; we're constantly told that we should take control of our own healthcare...

3) What masks are good in the 15-17 pressure range? My first mask was a comfortgel nasal mask - I felt really claustrophobic and woke up with the room spinning, gasping for air with this one.

4) Has anyone out there ended up buying masks themselves, even though they're using a DME for the machine, humdifier, filters, and hoses?

Thanks in advance. I'm really glad that this online community is available.

What about YOU going to your local DME provider to try masks rather than their RRT coming to you w/a couple of masks? I would expect that the provider would have considerably more masks available "at the shop" than the RRT is going to haul to your house. Plus that would be less time-consuming for the RRT as you aren't his/her only patient and might improve his/her attitude.

Is a PROPER fitting being done? Are you laying down for the fitting? Is your CPAP turned on to 10 cms or whatever your pressure setting is whichever is highest when fitting a mask?

If you have a high leak rate you can't believe the data your PAP is providing so the #1 priority should be to get you a relatively comfortable, relatively leak-free mask. And a high leak rate could also be due to mouth breathing and/or mouth leaks w/or w/o mask leaks.

Another situation that could affect the accuracy of your data is the proper setting of the Mask Selection feature on your Resmed.

You want a 95% Leak rate under 40 L/s or better yet 24 L/s to be able to have any faith in your other data. If you're experiencing a high leak rate your autoset is raising your pressure in response to compensate for the leak.

Before I forget, by all means you should get a copy of your equipment order (prescription) but you can get a copy from DME provider OR your sleep doctor. You should always carry a copy w/you when you travel just in case your CPAP or accessories are lost, broken or stolen.

You aren't going to get any flak from your insurance company for adjusting your therapy settings yourself. The only thing your insurance is interested in is are you using what they are paying for. Whether your DME provider or sleep doctor get into a twit about it we can't answer because we don't know them. If you are using good sound logic when making adjustments and can show improvement there are those sleep doctors who won't have a problem w/it at all. Then there are others .... who knows??

You are absolutely correct to continue searching for THE right mask for YOU because until your 95% leak rate is under 40 L/s at the correct Mask Selection you really can't rely on your reported data.

I've been thru about a dozen masks. We are all different but I've found that I prefer the ProBasics Zzz-Mask full face mask, the Respironics Simplicity simple nasal cushion and the Swift LT nasal pillows. I've never tried any of the oro-nasal masks such as the Liberty. I really rather liked the PR FitLife full face mask and haven't given up on it yet but still haven't found a reliable method of preventing the leak at the center of the forehead. My forehead is more flat than the FitLife forehead area is rounded. *sigh*

Thanks for the reply. I didn't know that I COULD go into my DME's office for a fitting. I'd be more than happy to do that. I was just told that I would be contacted and the tech would bring me a mask. I'll have to do some checking around to find out where the office is. No fitting was done other than her showing me how to put it on. Everything else has been trial and error.

Also, thanks for the info about leakage rates.

Oh, goshes, SOMEWHERE here in this forum there is a thread or post w/PROPER mask fitting instructions. *sigh* Most likely Rested_Gal has a link to it or a link to a link to it in her sig. She's one of our resident "fountains of informaton".

j_s, honey, welcome to the forum! Please, please, please get copies of your sleep study and your Rx. You're entitled to have them. Some doctors respond well to the "I need the script for when I'm traveling, in case I have to replace a mask or something," idea (seriously, do they want us to SUFFER on vacation??) and others will do it if you just say you need a copy. And, if you're happy with your DME overall, go to their place and try on all the masks you want. Remind them that finding the right masks is like finding the perfect jeans--you might have to try on LOTS to get the best one. That said, fwiw, I really like the Hybrid. My pressure isn't as high as yours, although your pressure might be chasing the leaks and could settle down a bit when the leaks are under control, but others on the forum who have high pressures have had success with the Hybrid. And your insurance is less than interested in your settings, or who pushed the buttons to set them. Really. They only care if you're using the equipment or not.