Newbie - but not really

[Methos1979]

Hello to all.

I'm new to this forum, but certainly not new to this condition. I've been on a CPAP for around 8 years and a true success story. Started on CPAP therapy around age 40 after a long time trying to medically find out why I was feeling so bad. I didn't snore and didn't have all the typical signs. But once I had the sleep study and started treatment, it was night and day how much better I felt. Fast forward 8 years and I was still using the same machine. I'd lost some weight and was noticing I wasn't sleeping as well as usual. I would wake with my mouth open and air leaking out and the mouth was very dry. Went back to the sleep doc and since I was still using the same CPAP machine from 8 years ago we decided to get a new one (insurance will pay for new one every 5 years.) Since I was losing weight we decided to try an APAP so the machine could find the correct pressure. This is where the wheels came off the wagon. The new machine was set with a wide open range of 6 to 20. When I started using it the pressure it was honing in on was 17 to 18. Air was blowing out of my mouth even worse and the nasal pillows were leaking like a sieve. It was awful and I felt awful. I jumped onto sleepapnea.org and people there were horrified that my doc would prescribe such a wide range. People there sent me here. At first I went in and tweaked down the range to 8 to 12, 2 above and 2 below my original pressure of 10. That was little better but still not great. So I finally just went in and set it up as a CPAP at 10 and called the sleep doc to request a new tritration sleep study, which I had last night.

New numbers came in right at 10 with a exhale pressure of 3. I've just reset the machine to 8.5 to 11.5 on APAP and will see where that goes. I have ordered the Encore software and card reader package from here and my plan is to tame this beast myself. I've learned a whole lot the last week just lurking and reading and I'm looking forward to getting my new machine 'dialed in' for my maximum performance. It would be nice to have the APAP set up to work well but if not I'll set it back to CPAP and 10. I also have A-flex and C-flex but those are still some what of a mystery at least from a standpoint of how, if at all, they are affecting my sleep. Once I get the software and card reader I'll really be able to dig into things and I'm sure I'll have a lot more questions. I'm a veteran user of internet forums and a pro at using the search function so hopefully I'll be able to find everything I need to find already posted here somewhere!

The one thing that came out of last night's titration was that while 10 was my ideal pressure, my mouth did open and he recommended a chin strap so I'll be trying that. Maybe I never needed a pressure change after all and all I needed was the chinstrap. Who knew? I've never been too impressed with my sleep doc. He seems rather bumfuzzled by it all. I should probably look for a new one but he also seems happy to let me do the work and take charge of my treatment which is good because I don't have to fight him on things.

M.

[kteague]

Welcome to the forum. Sounds like you're well on your way to pinpointing your problems and getting on with effective treatment. I found it frustrating (maddening actually) when I had a doctor who not only hadn't a clue about things very basic, but got angry and indignant when I wasn't wowed by his failure to help and began seeking outside solutions. I mean, in your situation, shouldn't mouth breathing/leaks be the doctor's first suspect for anyone using a nasal or nasal pillows mask? How hard is that? At least your doctor isn't arrogant and is open to your active involvement - that goes a long way with me (not all the way though). My doc was willing to let me crash and burn while he sat in his ivory tower looking impressive.

Even though your titration study didn't show a drastic pressure difference needed, after 8 years, I think I too would have been most comfortable having a new study instead of guessing. That is a long time and sometimes things do change. Best wishes as you continue in your cpap treatment. You are quite the veteran at this. (Notice I didn't say oldtimer.) But we can still learn new tricks. Hope the chin strap works out. In your searching, don't be surprised to run into words like "tape' and "Polident". You might even consider a full face mask. At a pressure of 10, you wouldn't be as likely to have major leak issues. Again, welcome.

Kathy

[SnoozyWoozyCat]

Since I was losing weight we decided to try an APAP so the machine could find the correct pressure. This is where the wheels came off the wagon. The new machine was set with a wide open range of 6 to 20. When I started using it the pressure it was honing in on was 17 to 18. Air was blowing out of my mouth even worse and the nasal pillows were leaking like a sieve. It was awful and I felt awful. I jumped onto sleepapnea.org and people there were horrified that my doc would prescribe such a wide range.

I have a question. I am using APAP and my doctor prescribed the full range of 5 min and 25 max. I have heard others on this forum say that this is a bad thing but I don't understand why. I'm using a full face mask and my average pressure over the last 3 weeks seems to be between 10.5 and 12. I don't see my doctor for another month but wonder if I should question her full range prescription.

[rested gal]

Snoozy, your profile shows that you were prescribed a VPAP Auto 25.

Do you have the Provider manual for that machine? If so, you can go into the clinical menu (if you want to) and see ALL the settings that the machine is set for. Just saying it's set for "5 - 25" doesn't tell what else it was set for, like these things (which they probably did leave at the default settings):



If you do decide to prowl around through the clinical menu to see those things, I'd suggest having a pencil and paper at hand. Write down every word and every number that you see for every setting. If you ever make a change to a setting and don't like the change, you'd have a record of what the setting originally was.

If you don't have the Provider manual, which shows how to go into the clinical menu, PM me.

Here's a link that explains what the "Change" and "Apply" words mean, when going through a ResMed clinical menu:
viewtopic.php?p=226375#226375

[mdintx]

Methos,

Many of us have had problems with mouth-leaking. A chinstrap wasn't enough for me and while controversial, I resorted to mouth taping. You might want to do a search on that and see if it's the right thing for you.

Mark

[SnoozyWoozyCat]

Snoozy, your profile shows that you were prescribed a VPAP Auto 25.

RG -- thanks the info. Once again you have come through with helpful information! I have gone in and looked at settings but am still learning about what they all do. I meant to post VPAP for my machine model but now that I think about it, what is the difference between an APAP and my VPAP?

[SleepyT]

....The one thing that came out of last night's titration was that while 10 was my ideal pressure, my mouth did open and he recommended a chin strap so I'll be trying that. Maybe I never needed a pressure change after all and all I needed was the chinstrap. Who knew? ...
M.

I'd like to recommend the PapCap chinstrap. Check it out on the web at Pur-Sleep. The short video is informative. I loved mine from the beginning...but then I found out just how important it is to my CPAP therapy. Keeps the jaw pulled forward as well as helping keep the mouth shut. At any rate, good luck...and welcome!