Adjusting to CPAP

[famousnick]

HI Everyone,
First of all, I want to convey my thanks to everyone who contributes to this forum. I've been a member for a few weeks and have been reading fairly regularly for a couple of months now and I have learned SO much.

Well, here's my story which will lead to my request for your help. It all started with my regular rheumatologist appointment in June 2009. I was describing some of my symptoms and he said, "maybe you have sleep apnea...let's schedule a sleep study" to which I responded "What??!!". I listened to him and went through with the study in July and by the end of the month I was a new CPAP user having been diagnosed with severe speep apnea (36 events per hour). Wow, was I shocked, but I made a decision to follow through with the treatment given the life threatening risks that I now faced. I adapted reasonably well to sleeping with the mask and managing the hose in general, but I wasn't feeling much of an improvement in the way that I felt. It wasn't long before I realized (with the help of my wife) that I was a classic mouth breather which was an obviuos detriment to my treatment. After starting with the Mirage Active LT in July, I progressed through the following steps to improve my treatment:
9/13/09 - Received Mirage Quattro FFM - nice mask but I have chronic leak problems with it that bother me during the night (I still have this mask). I have also used the cotton mask liners with this mask and it doesn't help much.
11/3/09 - tried several chin straps (Ruby Topaz is a good one) but I need to tighten it so much that it's uncomfortable and my lips still flutter
11/27/09 - Received Respironics Full Life FFM which leaked like a sieve and I sent it back
12/15/09 - Received a F&P Forma FFM which is an under the chin design. It works reasonably well but leaks under the chin and disturbs my sleep. (I still use this when I have a cold)
1/24/10 - Received a Resmed Auto 25 and went on APAP treatment as a trial for one month. I also received a Mirage Liberty (FFM mask with nasal pillows). I find that the nasal pillows restrict the flow of air through my nostrils and I end up with a very dry mouth in the morning.

I learned how to access the Clinician's menu and I've been tracking efficacy data since just before Christmas trying to appraise leak rates of different masks and to correlate AHI and the way that I feel. To date, the FF amsks have the highest leak rates (obviously!). My best combination has been using the Activa and taping my mouth shut (Leak rate range = 0.26 - 0.76 but most nights greater than 0.4). However, my AHI numbers are all over the place (range 3.3 - 21.6 and not many nights below 5). Where I'm headed with all of this is requesting your opinions on where to go from here. Here's what I'm thinking:
1. Step up my communication with my sleep doctor and get more input regarding my results to date. I've had one appointment (Nov 2009) and I have another coming up in a few weeks with no dialogue in between. All of my conversations have been with my equipment supplier and they've recommended trying different things (as described above)
2. Get a hold of the Resmed software. I'm going to ask my sleep doctor for it or to have a copy to try out. I'm not sure if that will work or not. I would like to not have to buy it.
3. Continue to try different masks. I've been doing some research and here's a couple that I am considering (please chime in with your experience):
- Respironics: Comfort Gel Full
- SleepNet: Mojo Full Face Mask
- Respcare: Hybrid Full face with Nasal pillows

I am committed to improving my care and working toward feeling better. I've read too many success stories on this forum!!

Your feedback would be greatly appreciated.

[rjjayrt]

First off your AHI numbers will not improve until your mask leak is fixed. Try to find a DME with an RT whos good at fitting masks, ask your sleep doc for a reccomendation and do some checking on your own. As far as full face masks go, I think the most adjustable one is probably the quattro by resmed. The ultra mirage FFM and the F&P 431 are good masks as well, as some on this forum already know i'm partial to the F&P 431 because the majority of my patients use it and so do I, but the ones I mentioned are top flight masks as well. You might also consider a nasal mask with a papcap chin strap. Most chin straps are crap but the papcap shows some promise. You might also want to make sure you have your humidifier set as low as possible and still be comfortable, too much humidity can cause a stuffy nose making it difficult to wear a nasal mask. Only other mask I can think of which might be appropriate for you would be the hybrid mask, remember that any of these masks will take time to get accustomed to. Once your leak is corrected then we can address your AHI.

[Patrick A]

I use the Swift Mirage II Nasal Pillow mask. I used to use the Comfort Gel mask I preffer the Swift. I was told by my no account &*#@% DME (Apria Ripoff) that I could not use a Nasal Pillow mask because of the high setting of my Cpap machine. I changed from a straight Cpap to a Bipap Auto. I have great results with the Nasal Pillow style mask. Welcome to the forum there are a lot of people here that have great bit knowledge about cpap. Welcome to the "World of Hose Worship".
Good Luck

[rjjayrt]

Patrick: your DME should not of told you you can't use the swift pillow system with high pressures, he/she should of told you that its generally not an effective mask at high pressures, emphasis on generally. I as a matter of practice will only suggest pillows with high pressures as a last resort, unless the patient has experience with pillows and has used them in the past. The patients I serve expect me to use my best judgement based on my experience and my experience is that generally its not a good idea to use pillows with high pressures, its not unheard of by any means and I have put patients on pillows with high pressures as a last resort, some have worked, most did not....

[rheumrn]

I have really appreciated the advice from members of this board and learned quite alot since starting cpap in Jan. 2010. I had been very tired, snored loudly, had a fasting blood sugar rise (101) and palpitations. My family doctor sent me for a sleep study and I was diagnosed with severe sleep apnea (40 to 60 events per hour). I did follow the advice of many here and purchased: full bed wedge (for GERD); Aussie heated hose; Regenesis (buckwheat pillow) and Contour cpap pillow; Papcap; Padacheek; nasal saline spray/Nasonex (for nasal congestion); nasal gel.

I have decreased my nasal congestion by reducing my heated humidifier setting from 3 to 2. I have been to my DME several times to look at full face masks due to leaks. The Quatro FF mask (small) seems to be fine until the pressure gets high and then the leaks start. I am awaiting my Papcap and may resort to taping my mouth. I tried an extra small Quatro for one night but as soon as my mouth dropped open, the leaks were massive.

My appointment with the sleep doctor is not until March. I had to have two sleep studies because I could not stay asleep for the required amount of hours on the first night. My sleep doctor wanted to increase my current pressure setting (high of 9 to 11 with ramp for 10 minutes) to a "constant pressure of 15". The sleep tech told me not to bring my chip to the DME to have the new rx. entered (constant of 15) until I see the doctor in March.

I do seem to have an improvement in the amount of leaks I notice. My "major leaks" have dropped from 41% to 28% but my AHI went up from 6 to 10.

The sleep tech told me that my sleep studies showed: "unable to tolerate Bi-Pap". Does this mean that they actually tried me on Bi-Pap? I will ask the doctor about this in March.

They did start me out with a nasal mask but came back in one hour to change me to a Quatro full face mask for the rest of the night.

[Sergey45]

I am sleeping with CPAP machine for more than 4 years now. Remember that CPAP equipment needs to be adjusted to it.
It took couple of months for me to get comfortable with CPAP mask and the rest of the settings. I am also periodically trying different masks, looking even for better comfort.

[SleepyT]

Welcome, Nick! Sounds like you have done your homework! For a 'newbie'...you appear to have a firm grasp on your therapy. Good job! As far as what to do next....you are already doing it! Getting the software and getting a handle on your mask leaks are key. As far as working with your sleep doctor...you could do that....if you have a good one...or you can continue to exert control over your own therapy. Once you get the software...you will be able to tell if you should bump your pressure up or down. I think ultimately YOU will be the one to tweak things. I wouldn't rely on anyone else. At any rate....keep reading...and hang in there!

[famousnick]

Thanks for your input everyone.

What's the best way to get a hold of the software?

[SleepyT]

cpap.com sells it...as does cpapaustralia.com.