suggestions for bipap settings?

[College3girls]

My mom is going to be switched from APAP to BIBAP. After being on APAP for a year, her AHI is still in the mid teens to over 20 on most nights with APAP.

I'm not going to trust the Dr to get it right this time, based on the track record over the past year. Until I had advice from this forum, Mom's setting was left wide open at 4-20, for over 9 months. It would still be at those settings if not for this wonderful forum. Tweaking the pressures has helped, but the titration showed BIPAP works better, and Mom felt most comfortable with BIPAP. She could tell when the titration switched back to APAP.

And, the problems continue. The sleep lab sent her home with a simplus FF mask that did nothing but leak the night of the tirtration, and has since caused a very bad pressure sore on the bridge of her nose, despite her use of a gel-pad and mask liner. Heaven only knows how long it will take the prescription to get to the DME; it's been 3 weeks now.

I've told her to not use her CPAP for this week and let things heal. She won't be able to use any mask with her nose the way it is, and no, a nasal mask or pillow is not an option for her because of severe nose bleeds, and her pressure being at 20 most of the time with APAP.

My question is, what pressure should she start out with? Her APAP pressure with a Resmed s9 autset never goes below 13 on a very rare, good night. Most of the time it is at the max of 20. Her ramp is set at 10 for a length of 10 min, then the min is 12.5. and the max is 20. Her 95% pressure is 19.5. She does not use the EPR.

Also what mask should she try next? She has a quattro, a quattro fx, an air quattro, and the simplus, that I know of. She has a bag full of mask failures. Her leaks are well under large leak territory, but they do tend to disturb her sleep. She has found a liner to help immensely, but now she is battling that pressure sore.

I realize the pressure may be very different on BIPAP, and maybe the quattro fx, which she found comfortable, but leaky will work better. The same with the air. With so many choices of mask, I'm wondering if there is someone with a similar experience of leaks with APAP, a switch to BIPAP, and finding just the right mask.

[space45]

what make and model machine are you getting for her?
you will have to play with it and see what works best, looks like a EPAP of some where between 10 and 15 would be good start, would have max set at the max of the machine, should be somewhere around 25 and set the IPAP to around 20 as that seems to be where the other machine maxes out but sits at most of the time. let the machine let you know if the IPAP should be higher. raising the EPAP gives a faster return time to hit the 20 faster, for me that make a big difference but for her the lower EPAP may let her sleep better and lower central apnea problems that can be more of a problem at the high pressure settings.

as for mask leaks, that can be a real challenge, some find a light floating mask works best, and then for guys like me, I super squish, the straps are so tight they almost sing...LOL not quite. but that gives the picture, they are super tight, the straps started with some stretch and give, but not now they have no stretch left at all. I also modded my strapping and harness big time using Velcro from a fabric store. it is so heavily modded that very little is left of the head gear part. super squish may not work for her if she get sores real easily. it could be the hard plastic parts coming in contact with her skin, that would not be good. it is hard enough getting a good fit on yourself, hard to imagine getting it to work on someone else. make sure her skin is not coming into contact with the hard plastic parts. maybe tricky to confirm unless she is aware of things enough to tell you she feel the hard plastic rubbing on her skin.
good luck getting the fit. it is very important you get a good fit, but that can be somewhat elusive for some as well. I was lucky and got it working well. read up in the forum about getting masks to fit just right and not leak, there are a ton of tricks to learn and try.

also I find the high pressure does make mask fit more challenging, I was hitting 24.8 earlier, I now run at 21 to around 22.5 or so.

[robysue]

Do you know the results fo your mom's bilevel titration study? I know you don't trust the doc, but it would help to know what the recommended bilevel pressures from the bilevel test are as a starting point.

The thing about a bilevel is that there are two distinct pressure settings and it's not always immediately transparent how to translate an existing sort-of-working APAP/CPAP pressure setting to an appropriate bilevel setting. Since your mom does not currently use EPR on her S9 APAP, she will have a bit of an adjustment to make with the IPAP/EPAP changes. Since she said that bilevel felt better during titration she'll probably have no trouble adjusting. It's just that it's hard to make a wild guess about where to start the PS = IPAP - EPAP setting, and different folks' airways behave differently under bilevel. For some people, the IPAP setting is around the old 95% APAP pressure setting and the EPAP is 3-5 cm below. But for other people, the EPAP setting is what needs to be around the old 95% APAP pressure and the IPAP is set 3-5 cm above that level. And for other people, the EPAP is below the old 95% APAP pressure and the IPAP is above. But it's not always "balanced" in the sense that both are equally far from the old 95% APAP pressure.

Do you know if your mom will have an auto bilevel device? On the PR platform, that would be the System One BiPAP Auto. On the Resmed platform that would be the S9 VPAP Auto.

As for the very bad pressure sore on your mom's nose: If that pressure sore doesn't start to get better on its own, its worth having it looked at by a doc who specializes in skin problems and not just the sleep doc. And if she's had previous problems with masks causing sores, then it's going to take some real effort to find and fit a mask that won't cause problems in the future.

Have you ever considered the SleepWeaver Anew™ Full Face Mask by Circadance. It's 100% cloth, and hence less likely to cause pressure sores. But it also has the reputation for being a bit tricky to get a good seal.

And is the pressure sore being caused by the forehead support or the top of the cushion rubbing against the bridge of her nose? If it's the forehead support that's causing the problems, it's worth giving the FFM masks that don't have a forehead support another try.

[jannicatt]

Your mom's experience sounds a lot like mine for three years. I am only a novice and can only tell you my experience but maybe there will be something in it that will help. I had three sleep studies done with a full face mask and each time was diagnosed with obstructive sleep apnea and a setting of around 18 each time. Finally I was given a Bipap but still with this setting and my AHI continued to be very high. I could not control the leaks even though I tried many masks. My face features did not match the masks and I would waken so often during the night and fight with the leaks. Changing masks, tightening them and any thing I could do. Lincare was my provider and they really didn't care as long as the insurance and I paid the bill. THEN I changed providers and got a wonderful DME. She worked hard to help control the leaks and finally suggested I try a new doctor. I did. This doctor started from scratch and had the technician try a nasal pillow ands a nasal mask as well as the full face mask. I came home with a nasal mask and a setting of 8-13. They discovered for some reason I could handle less pressure with the nasal as opposed to the full face. I don't know why but it was true for me. I have tweaked it some in the last year following ideas I read on this forum and that has also helped.

Now I have no leaks and I use tape as I am a mouth breather. The chin straps didn't work as well and I really don't notice the tape at all. I sleep well, don't waken from leaks and have an average AHI of under 5 pretty consistently. I am thankful I changed doctors!

This may not be true for everyone but it happened for me and I would surely love to hear that your mom could possible get similar help.

[space45]

Have you ever considered the SleepWeaver Anew™ Full Face Mask by Circadance. It's 100% cloth, and hence less likely to cause pressure sores. But it also has the reputation for being a bit tricky to get a good seal.

do they work at high pressure?
I have a FFM one and can not for the life of me get it to seal and I worked at it as I wanted to use it real badly. but it leaked so much at the high pressures I run, I should try setting my machine to low pressure and see if I can get it to seal.

[College3girls]

I have no idea yet what her prescribed pressures will be. To date, she does not have any central apnea, even with the high pressure of 20 all night, so I'm thinking central apnea should not be an issue.

I'm also going to push for her to get a BIPAP auto, and certainly make sure I can get data. I plan on being present when the DME gets around to supplying mom's new set-up. I will be contacting them Monday morning since it has been a month since the titration study.

The pressure sore is directly from the F and P Simplus FF mask, at the hard plastic nose bridge piece. Mom kept trying to make this work because it was the least leaky of all her mask attempts. She did try my nuance pro nasal pillow and had profusely bloody noses throughout the next 4 days after using it only a few hours one night, so nasal pillows are out, and probably any nasal masks as well. She suffers from allergies and stuffs up also.

She has very high cheek bones and a rounder shaped face. I'm really hoping BIPAP makes it easier to get something to fit. Her insurance will only cover 1 mask every 3 months, and they did charge her for the Simplus. Don't worry, they are NOT going to get away with saying "sorry, you just got a new mask and you are stuck with it for at least the next 3 months."

[robysue]

I'm also going to push for her to get a BIPAP auto, and certainly make sure I can get data. I plan on being present when the DME gets around to supplying mom's new set-up. I will be contacting them Monday morning since it has been a month since the titration study.

Some things to be aware of when you are picking up the bilevel.

On the PR side there are two bilevels:

• The System One Series 60 BiPAP PRO
• The System One Series 60 BiPAP Auto

On the Resmed side there are two bilevels:

• The S9 VPAP S
• The S9 VPAP Auto

All four machines use an SD card to record the data and all four machines record full efficacy data. So you don't have to worry about the DME playing a switcheroo and delivering a brick.

Also all four machines work well with SleepyHead so you can use that for monitoring your mom's data. Finally if your mom is switched to a PR BiPAP, you can pm pugsy and she can get you set up with the appropriate version of Encore if you want the "official" software in addition to SleepyHead.

[College3girls]

Thank you, all, especially Robysue. Having the models of machines to look for is a big help. I have printed that post out, and will have it with me with when meeting with the DME.

Finding the right mask will continue to be the biggest task, as well as once Mom gets her BIPAP to monitor the effectiveness of her therapy. Yes, I'm sure to be posting to Pugsy as things progress.

Happy Mother's Day to all the Mom's.