Why isn't CPAP helping as much anymore?

I'll try to keep the back story short. I dealt with waking up multiple times per night (best of times roughly 3 times a night, worst of times more like 8-9 times a night) from when I was a teenager until last fall when I was diagnosed with apnia (I'm 43). I'm now thinking that my problem might have initially been UARS since it started when I was a skinny teenager, my blood pressure has always been low, I have snored since then, and my hands and feet are always cold. Whether or not the initial issue was UARS over the years I have put on weight and I now have sleep apnea.

I started on CPAP back in November. When the sleep tech woke me up from my titration study I couldn't believe how great I felt. I continued to sleep through the night fairly well (and feel great) for about 2 months. I lost about 10 pounds. My numbers looked good (AHI of around 2 with large leaks around 1%-2%). Right around my last appointment with my sleep doc I started waking up through the night more. I noticed that my leaks were up so I tried switching from Swift FX nasal pillows to a nasal mask. Leaks are still pretty high and I'm thinking it might be from me opening my mouth at night (I woke up with an extremely dry mouth for a while but that seems to have stopped). Right now large leaks are at 8% over the past week and about the same over the past 30 days. The worst numbers I saw were large leaks of 14% over a week. I don't think the leak is around the mask because the few times I know that has happened the noise woke me up. My AHI has consistently been around 2 still (1.5 - 2.0 virtually all of the time). Despite the low AHI I have been waking up a lot through the night (like old times) and not feeling as rested during the day. I exercise in the morning and a lot of mornings my lungs feel sort of tender/sore, like maybe my pressure is too high. I'm not sure how to describe it. BTW, my pressure is 12. The titration study seemed to show that AHI dropped to around 2-3 at a pressure of 10, was the same at 11, and the same at 12. I don't recall if the doctor explained why she thought 12 was a better pressure for me than 10 or 11.

I have an appointment scheduled with my sleep doc but wanted to have a better idea of what I should ask and what I might want to push for. I'm thinking that trying a full face mask couldn't hurt and could help if mouth breathing is the problem. I tried a chin strap but couldn't get used to it (I admit I didn't try all that hard but adding something to the mask was too much for me). I don't like the idea of taping and my skin is extremely sensitive so I'm worried how that would work out. I'd be open to trying a slightly lower pressure like 10 or 11 if that might help.


Anyone have any thoughts on why CPAP isn't working as well for me anymore (or what things I should bring up with my doctor)?

Are you using Respironics machine?
It would help if you would register and list your equipment in your profile so we know what you are using.

You mention percentage of leaks so I am assuming that it is Respironics PR System One machine of some sort.
For it to flag ANY large leak means the leak is HUGE. I bet you are losing therapy though the mouth.

With that much of a large leak the rest of the data (what little you get off the machine) is not reliable.

There is software available for the Respironics PR System One machines then you could see for sure just how much large leak there is.

A FFM is certainly an option since you may be losing a large amount of that needed pressure through the mouth. Rather than going to the doc with ideas of what to "push for" I would just write down my questions and symptoms, and the information about leaks and AHI (unless they read your data card). One of the things with docs is to really be clear about what your problem's are and discuss those. The pressure from the CPAP should not directly affect your lungs since the main function of the air is to splint the airway open, not to increase the amount of air you breathe, in other words it does not expand your lungs. I second the request that you fill in your profile as to machine and mask as that info will help us advise you. Sorry you're not feeling better.
Good luck.

Pugsy wrote:Are you using Respironics machine?
It would help if you would register and list your equipment in your profile so we know what you are using.

You mention percentage of leaks so I am assuming that it is Respironics PR System One machine of some sort.
For it to flag ANY large leak means the leak is HUGE. I bet you are losing therapy though the mouth.

With that much of a large leak the rest of the data (what little you get off the machine) is not reliable.

There is software available for the Respironics PR System One machines then you could see for sure just how much large leak there is.

I think my machine is the same one you are using (Machine: PR System One REMstar Auto CPAP Machine with A-Flex). I bought the software but couldn't get it to work on my computer (I think it was a 64 versus 32 bit issue) so I gave up. I need to give that a shot again at some point.

Mary Z wrote:A FFM is certainly an option since you may be losing a large amount of that needed pressure through the mouth. Rather than going to the doc with ideas of what to "push for" I would just write down my questions and symptoms, and the information about leaks and AHI (unless they read your data card). One of the things with docs is to really be clear about what your problem's are and discuss those. The pressure from the CPAP should not directly affect your lungs since the main function of the air is to splint the airway open, not to increase the amount of air you breathe, in other words it does not expand your lungs. I second the request that you fill in your profile as to machine and mask as that info will help us advise you. Sorry you're not feeling better.
Good luck.

Thanks for the well-wishes. My machine has a data card that I take in with me to the doctor's office.

There have been nights that I wake up in the night because I'm feeling like it's really hard to exhale. Like I'm being blown up like a balloon or something. The next morning I tend to have the "tender" lungs feeling.

I have tried Swift FX nasal pillows mask and am currently using a ComfortGel Nasal CPAP Mask. The problem started when I was still using the Swift FX and continued unchanged with the ComfortGel Nasal mask.

Oops, those last 2 posts are by me (the originator of this thread).

EncoreViewer 2.0 is hard to get to work on 64 bit computers from what I have heard.

EncorePro 2.4 offers a 64 bit version that at least will work if none of the other issues with install comes up.
Send me a PM if you wish to discuss EncorePro. I might could help with it.

You really need the software to see what is going on. Very limited onscreen data doesn't help much unless the numbers are grossly huge and in your case the leak is. That percentage is for the time spent in Large leak and for Respironics to register any large leak, the leak has to be just awful... So I am betting that your overall leak line is pretty bad too and before you can even think about expecting any improvement the leaks must be fixed.

Once leaks are fixed then we look at the AHI numbers and pressures to see if things are optimal there.

Must have leaks under control first.

Try using a boil and bite mouth guard. Less than $2 at Wal-Mart. It will help prevent mouth breathing....