Very high pressure prescription

A few weeks ago I had my first polysomnogram, after a home test indicated I needed CPAP. A few days ago I had the follow-up appointment with my doctor, who decided to both move me to BPAP and to change my pressure settings.

On the CPAP, after the home test I was prescribed 8cm max, 4cm min, auto level. Although like most of you it takes some adjusting to get used to a machine blowing up your nose, wearing the mask, and all that, I feel I was beginning to. The PSG however showed that was totally ineffectual and my new prescription is a fixed 22 inhale/18 exhale (on BPAP with EPR). I feel like I'm sticking my face into a jet engine exhaust. Even with the ramp feature I don't see how I can ever sleep with this -- I wake up after an hour with my airway as dry as the Sahara. I have the humidifier turned on, and I don't see any leaks reported so I don't think my mouth is opening.

I'm using software to check it, and leaks are in the twentys, far less than the 50 l/min that's the threshold for large leaks. The machine is a Phillips Respironics System One, which I understand does not subtract off the mask vent in the leak report so almost all of that should be the intentional vent.

It doesn't seem like a lot of people here have to exhale into 18cmH2O of pressure (17.6 mbar), or do you? For those that do, are you on full face masks? I was hoping to be able to continue using my Swift FX, but it seems like there's no way at these pressures. I have to tighten it until it hurts to keep the pillows from blowing off. Instead I'm using the comfort gel nasal mask; makes me feel like I'm a victim in Aliens, with a spider-like face-hugger attached, but now that I've planted that image in your heads I'm sure I can get used to it. It's not the mask that's the issue, it's the pressure.

I'm thinking about lowering the pressure until my next follow-up appointment a few weeks from now. After all, the doctor had me on 8/4 for over a month before my PSG. The PSG was unpleasant, and maybe I was stressed from that -- I was woken at least 5 or 6 times to adjust my mask, change it, or reattach sensors. The technicians were very nice and professional, the room was great, and the bed comfortable but it was not a good night's sleep. It sure was expensive though -- I just saw the bill, $3800. Shoot, a fella could have a pretty good weekend in Vegas with that.

There are a number of users here that have high pressures and are able to use nasal pillow masks. So it can be done, Hopefully someone that does will see this post and chime in. Mine is not that high so I can't really relate well.
If you don't get those responses you might edit your subject line to include the Swift FX or other nasal pillow to get their attention.

I have a full face mask. I took a fluffy towel – cut it to fit from ear to ear & forehead to chin – cut a hole for my nose to stick out – it covers eyes, mouth with nose sticking out, put mask on and no more dry eyes, dry mouth, leaks or wierd noises.

Wow, they gave you pillows? MY DME says that my pressure (17cmH20) straight CPAP is too much to use pillows with and won't give them to me to try.

I'm using an Respironics EasyLife Nasal Mask. I'm trying to get a hold of a Quattro to try. I tried a Quattro FX but my pressure blew out the mask the minute it got turned on. But then I'm not sure if it was fitted properly, since it was my request that even brought that mask to the DME's attention and I knew more about it than they did.

I wish you good luck.

@cpapabc -- Just great, I go from an alien face-huger to being smothered with a caul. Just kidding, thanks for the hint and the response, I'll definitely try that if I move to a full-face mask.

@CruzTerri -- Well, the DME didn't give me the Swift FX with the Bi-PAP and higher pressure, it's what came with the CPAP machine, when my pressure was 8/4 cm. They provided a nasal Comfort-Gel mask. As I said, I was hoping to be able to use the Swift, as I don't really care for the comfort-gel, but the DME was doubtful and I haven't really been able to stop the leaks with it at 22/18 and have it not hurt. At lower pressures, say 16/12, I can get it to work fine.

@Janknitz -- When I said "blow off" that was perhaps exaggerating, I just meant I couldn't stop the leaks without tightening it to the point of discomfort. I certainly tried it loose too.

But I'm confused, there is no negative air pressure in a Bi-PAP (or a CPAP), so the pillows aren't going to hold anything in place with the machine on. The outer shell of the pillow when close to an obstruction will deform and expand a bit from the increased pressurization in the gap between the two shells and the decreased pressurization on the inner shell and body from the Venturi effect of the air flowing through a now restricted pathway. This outer shell expansion is obviously carefully engineered to create a good seal with the nostrils, with the outer shell much thinner and more flexible than the inner. But there's no air pressure holding them against your face, and in fact the air pressure is trying to push them away; it's the resistance from the straps that keep them in place. The expansion creates the seal, but that can't overcome the outward pressure by itself, and at a high enough pressure without too-tight straps the pillows move far enough away (fractions of a mm) that the seal fails.

For me and my mask that seems to be somewhere around 20cmH20; below that I can get a no-leak comfortable fit on the Swift FX, and above it I just can't -- it can be comfortable and leak, or uncomfortable and not leak. Maybe new pillows would help. I have no real problem getting a decent fit with the comfort gel mask, I just don't like it as much and doubt that I ever will.

You were probably just over-simplifying things for me, or I misinterpreted them, and I appreciate your comments. They got me to examine the sealing mechanism more closely and think about how all this works. Once upon a time I was loosely involved with fluid dynamics research, and I can appreciate some of the engineering and science that goes into designing these masks.

As I said, it's not really the mask that is my issue, that's just a minor thing. Even with a good fitting comfort gel mask I feel dried out after a few hours at 22/18, with the humidifier turned up. But maybe there's an problem with the humidifier: the water level is going down, but very slowly. I filled it to 75% a few days ago and it's still at 60 - 65%. (I confess, I'm not emptying and cleaning it every day.) Is that normal? How much water do people go through in an average night? I like to sleep in a chilly room (60 degF) and as it's the rain/fog season here the dew point is low enough that I wouldn't expect a whole lot of water to be used, but even so...

I go through half a tank a night and I have it set to the lowest setting it will go without turning it off.

I top off every other day and never dump out the leftover water. Two years on this machine and the tank is still crystal clear.

For an update, I managed an earlier appointment with my sleep doctor. He was quite willing to lower my prescription to what I found works for me: 16.5 inhale, 12 exhale, auto. That means I can use my swift FX nasal pillow mask, which makes me quite happy; I sleep so much better with it. After looking at the data from the SD card in fact he said as long as I could keep my AHI below 5 -- it's .2 at my current settings -- I could continue to adjust it "since I knew how".

My dry throat, mouth, and sinuses problems persist however. I've tried taping my mouth, and with the tape still in place and holding I wake up so dry it almost hurts. The leak data from nights with the tape show no noticeable difference from the nights without it (both still well under the large leak limit), so I'm pretty sure I'm not mouth breathing. I still suspect my humidifier isn't fully doing its job, even turned up.

One thing still to try is changing the mask resistance control settings. My DME gave me the chart for different mask types (a chart that is not in the provider's guide) when she heard I was going to try the swift FX. For the medium swift this setting seems like it should be X2. Nasal and full face masks are all X1 and for the minimal contact types the setting mostly goes up as the size goes down, with small and petite pillows making out at X4.

I don't have a PR One setup myself, but I recall reading that the humidifier has some kind of "intelligent humidification" gobbledygook built into it, possibly translatable to "too smart for its' own good"! From the description of the way that it works, it apparently adjusts to eliminate rainout, and maybe what's just right for preventing rainout is way, way too dry for you. I believe it also has a "classic" mode, so you might want to explore that.

I'm using the previous M series at the No. 3 marking (range is 1-5), and I go through a bit more than half of the tank each night (I'm in Seattle, not exactly known for being arid this time of year!). I like the room to be fairly cool, so initially I had a LOT of trouble with rainout, but I've since gotten a hose cover and added one of the Repti Heat Cables and that completely eliminated the problem.

CruzTerri wrote:Wow, they gave you pillows? MY DME says that my pressure (17cmH20) straight CPAP is too much to use pillows with and won't give them to me to try.

The DME is telling you wrong, Terri. Nasal pillows can be used at pressures of 17, 18, 19, 20, and on up.

A lot of DMEs parrot that line... "Nasal pillows can't be used at high pressures." But they most certainly can.

As with any mask, a seal can get more difficult to maintain the higher the pressure is. But other types of masks (full face and traditional triangular shaped "nasal" masks) have a lot more territory around the perimeter of the cushion around the mouth and up over the nose to have to seal. Nasal pillows seal right there at the nares...only one small round spot at the outer rim of each nostril to keep sealed. Fixes for helping nasal pillows interfaces "stay put" are usually much easier to come up with than trying to "fix" a big hunk of traditional mask to seal well against the face...at any pressure, but especially at the higher pressures.

Some DMEs might simply assume that the direct flow of air straight into the nostrils with nasal pillows would feel like too much "rush" of air at high pressures or would irritate the nasal passages. However, even at high pressures the way the air flow out of the nasal pillows affects a person's nasal passages is going to depend on each individual person. There are people right here on this board happily using nasal pillows at high pressures -- some of them probably using no humidification at all, some using passive (no heat) humidification, and others using their humidifiers at whatever heat setting suits them best.

There just really is no good reason for DMEs to issue a kneejerk "no" to nasal pillows at high pressures. If you want to try a nasal pillows mask at your pressure of 17, you should be allowed to. Might be the best mask you ever used. Or might not. That, too, is true of every mask at ANY pressure -- even low pressures.

Hybot.......(Gort)

You've been blessed with wise words from Rested Gal....the person I consider to be the "Mother Superior" of this forum. What she's telling you is spot on-correct. Nasal pillows seal better at high pressures for the reasons she gave.

I only have a couple of suggestions. First, experiment with some Lansenoh lanolin on your nares. The stuff helps the pillows seal even better....and add to your comfort level. You can find a tube of it in the "baby" section at the drugstore. It's for nursing moms....and is perfectly safe. Great stuff...you'll like it.

Second.....I have a very strong suspicion that you're leaking pressure out of your mouth. The only way I've found to control pressure leaking from my mouth is by using tape. Through experimentation, I've found that 2" wide Blue 3M #2080 Delicate Release masking tape...from the paint department of Lowe's...is the best. I use about 14" of the stuff every night....and I find it very effective. For maximum comfort during removal, don't pull at 90-degrees from your face. Pull parallel to your face.....180-degrees.

If you can absolutely stop the pressure leaking from your mouth, I'm betting that you can reduce your pressures to much more comfortable levels....without a loss in therapy effectiveness. The whole idea is to run the system at the lowest possible pressures....for the greatest comfort....with effectiveness consistently below 2.5 AHI. And, by the way, I think that the original pressure settings they gave you (4 to 8 cm) were rediculously low.

Finally, I mentally thank Rested Gal every day for helping me learn about the Aeiomed Headrest mask. It's the one she uses.....I simply followed her lead.....and I love it. You might consider experimenting with one......it really does a fine job.

Your attitude toward your therapy is excellent....and I know you'll do well. Just keep chippjng away at the little difficulties....and soon enough, you'll have things running perfectly.

G

PS....The approx $3800 price for the sleep test was fraud. Your insurance company paid them around $700 for the test. The price is marked up at about 5-times what they really do it for. The 500% markup is designed to confuse the customer about the co-pay....and "screw without pleasure" those who have no insurance.

I did try tape, both blue painters tape (I just happen to have some, it's versatile stuff) and some quality medical tape. I really didn't see a difference. Both were firmly in place when I woke up. The video from the PSG didn't show me mouth breathing either. I suppose there could be small leaks around the nostrils with the Swift, or mask leaks when I was using the comfort-gel, but I don't feel or hear anything once I have them adjusted. I'll definitely try lanolin, it's been on my shopping list for a while now, I just keep forgetting (not frequenting the baby section of the drug store).

My girlfriend knitted me a hose cover so rain-out hasn't been an issue. It's cashmere no less -- she's that happy that I'm not snoring (and less likely to die.) Before that I would get some rain-out, and the humidifier water level does go down (slowly) so it's not totally ineffectual, but maybe the heating element isn't working. I'll run some tests this weekend.

As for the PSG bill, I've stayed in what I thought were some very nice places, but nothing approaching $4000/night. I was just kind of wondering what a $4000 night in Vegas would be like, and how much of that would go towards a room and how much for "other activities" . (The line "A fella could have a good time in Vegas with all that" is from Dr. Strangelove, a wonderful movie. [The original line was "... in Dallas", and that was what was recorded, only to be dubbed over to "Vegas" after the JFK assassination.])