bjhunt01 therapy help thread

[bjhunt01]

Aerophagia was very bad when I first got on CPAP and my minimum pressure was 4. I haven't had it for awhile to any severe extent so I wonder if it would be OK to change pressures? Would changing pressures help those dropped mouth leaks? Here's last night's screen. I woke up just before 3 and had some trouble going back to sleep for awhile thus the Centrals. I had to get up early so I didn't get much sleep. Still had a big blob of leak although the leak rate numbers are lower. I just read this sentence from an article on aerophagia so I wonder if I should turn the EPR back on?

"3. Expiratory pressure relief features are available on most CPAP machines today. Depending on machine brand, it may be called CFLEX, AFLEX OR BIFLEX on Philips Respironics brands and EPR (expiratory pressure relief) on ResMed brands. This feature automatically reduces air pressure upon exhalation and can help reduce or eliminate aerophagia. Contact your CPAP provider and inquire if this feature is enabled and set on your machine. This is commonly a patient controlled feature, so ask to be shown how to use it."

Or should I stick with last night's advice to keep on with the current numbers? Thanks all!

[Dog Slobber]

Aerophagia was very bad when I first got on CPAP and my minimum pressure was 4. I haven't had it for awhile to any severe extent so I wonder if it would be OK to change pressures? Would changing pressures help those dropped mouth leaks? Here's last night's screen. I woke up just before 3 and had some trouble going back to sleep for awhile thus the Centrals. I had to get up early so I didn't get much sleep. Still had a big blob of leak although the leak rate numbers are lower. I just read this sentence from an article on aerophagia so I wonder if I should turn the EPR back on?

I'm not going to advise on pressure changes, because you're walking s gin line between leaks, aerophagia and pressure changes. You're in pugsy's capable hands.

But, I'll share my aerophagia experience in case is also applies or at least gives you some encouragement.

I had aerophagia troubles for the first six months or so. My work-around was to cap my max pressure. Then with the help of the forums and what I learned here made an effort to dial-in my therapy. Like most, my minimum was too low, as I started to increase my minimum my AHI dropped, but so too were the high pressure points my machine need to go too.

Then a few weeks later I realized that I hadn't had any aerophagia troubles. I don't know why my aerophagia disappeared. Did my body finally get accustomed to CPAP and adjust? Did my machine not going as high help? Did I just grow out of it? No idea.

And the obligatory YMMV.

[bjhunt01]

Aerophagia was very bad when I first got on CPAP and my minimum pressure was 4. I haven't had it for awhile to any severe extent so I wonder if it would be OK to change pressures? Would changing pressures help those dropped mouth leaks? Here's last night's screen. I woke up just before 3 and had some trouble going back to sleep for awhile thus the Centrals. I had to get up early so I didn't get much sleep. Still had a big blob of leak although the leak rate numbers are lower. I just read this sentence from an article on aerophagia so I wonder if I should turn the EPR back on?

I'm not going to advise on pressure changes, because you're walking s gin line between leaks, aerophagia and pressure changes. You're in pugsy's capable hands.

But, I'll share my aerophagia experience in case is also applies or at least gives you some encouragement.

I had aerophagia troubles for the first six months or so. My work-around was to cap my max pressure. Then with the help of the forums and what I learned here made an effort to dial-in my therapy. Like most, my minimum was too low, as I started to increase my minimum my AHI dropped, but so too were the high pressure points my machine need to go too.

Then a few weeks later I realized that I hadn't had any aerophagia troubles. I don't know why my aerophagia disappeared. Did my body finally get accustomed to CPAP and adjust? Did my machine not going as high help? Did I just grow out of it? No idea.

And the obligatory YMMV.

Thanks Dogslobber. I think I'm having a similar experience. I've raised my pressure from 4 to 6.6. My max was ptreviously around 7.4 up and down and now I am at 10.20 which is really new for me. Every time i raise the pressure someone comments on how I seem to be pushing right up there so I am wondering if eventually I'll be going higher. And like you, my AHI's are dropping but having that darned leak from my tongue dropping inside my mouth. Is that where I'm having aerophagia I wonder? I saw different reasons for why it could be happening in the article I read...too high...too low...mouth breathing etc. etc. What does YMMV mean?

This is the most amazing forum I've ever been on. Everyone is so helpful and kind as well as crazy funny. It makes a difficult struggle less difficult. Thanks!

[Pugsy]

YMMV Your Mileage May Vary
Commonly said because people are so individual that we can't assume what works well for one person will work well for the next.

[djams]

Would changing pressures help those dropped mouth leaks?

Nope. Have to work with the cervical collar and tape to stop this. You're using the Dreamport, so you can be very confident your mask isn't leaking. Focus on finding a way to keep your mouth closed all night. Easier said than done, I know - I was also a mouth breather at night. For years and years. It isn't easy to fix.

Is the tape still causing sores around your mouth? I know the micropore is capable of removing skin, I've had this happen a few times, once from my lip. It hurts. Have you tried other types of tape? I think Tweetie recommended something. And SomniFit for example, is very gentle. Wasn't capable of keeping my yap closed, but maybe you could layer - SomniFit on and around the mouth, covered by the rough tough stuff.

[Tweety]

Would changing pressures help those dropped mouth leaks?

Nope. Have to work with the cervical collar and tape to stop this. You're using the Dreamport, so you can be very confident your mask isn't leaking. Focus on finding a way to keep your mouth closed all night. Easier said than done, I know - I was also a mouth breather at night. For years and years. It isn't easy to fix.

Is the tape still causing sores around your mouth? I know the micropore is capable of removing skin, I've had this happen a few times, once from my lip. It hurts. Have you tried other types of tape? I think Tweetie recommended something. And SomniFit for example, is very gentle. Wasn't capable of keeping my yap closed, but maybe you could layer - SomniFit on and around the mouth, covered by the rough tough stuff.

Nexcare Sensitive Skin tape (blue) is what I use, and roll my lips under to protect them--it peels off (carefully) without trauma, at least for me, and I can reuse it a second night. They aren't really large pieces, and I don't seal my mouth, just put a couple pieces on under the scunci to stop my lips separating when my jaw drops (I can't see under the Bleep, I just slap 'em on there). I can even get a little air out if I wake up in a panic. Here's the idea (you can see the scunci at the ready...) :

IMG_7175.jpeg

[djams]

Nexcare Sensitive Skin tape (blue) is what I use, and roll my lips under to protect them-

Thanks Tweety!

@bjhunt- highlighted part is really important. In my case taping horizontally this creates a moisture barrier and prevents the tape from turning to goo. Better seal too - even with my beard/ mustache.

I normally say "purse the lips", but I'm going to adopt Tweety's phrase going forward. Perfectly clear. With Teeetys permission of of course.

[Tweety]

Nexcare Sensitive Skin tape (blue) is what I use, and roll my lips under to protect them-

Thanks Tweety!

@bjhunt- highlighted part is really important. In my case taping horizontally this creates a moisture barrier and prevents the tape from turning to goo. Better seal too - even with my beard/ mustache.

I normally say "purse the lips", but I'm going to adopt Tweety's phrase going forward. Perfectly clear. With Teeetys permission of of course.

Happy to oblige! lip-rolling, that's the only thing I got to contribute. Along with the tape and scunci, I have also recently pulled the Dr. Dakota collar from the recesses of my closet because I've been experimenting with sleeping on my back--everything I use was gleaned from this forum.

[bjhunt01]

Pugsy, djams, Tweety:

Thanks for the feedback and questions. I was bad last night and upped my lower pressure from 6.6 to 6.8. I know. I know. I am one of THOSE people! Since I started this in September, I am getting pretty itchy and impatient. I learn by doing and making mistakes too. So...last night, because of an earlier post - might have been Tweety's I did have the blue tape. I couldn't put it on the side of my mouth that has skin removed and now scabs but I did think I was pretty well covered. I like the blue tape. I think i'll be good with that. I tried to go without the Scunci's and the cervical collar as well. Hoping hoping the blue tape would be enough. Again...live and learn. When I got up to go to the restroom I put the Scunci's back on. I don't think I did the cervical collar. The centrals midway are because I was trying to go back to sleep. The low pressure in the beginning is because I was reading until I fell asleep.

Tweety: I have a question about your picture. Your bleep tape looks to be lower than mine under your nose. You can barely see the tape under my nose. So it makes me wonder if I'm putting the ports on a little too high although I use a mirror and carefully aim them over my nostrils. Is there something I might change or was just the angle of the camera?

I googled the Dr. Dakota collar. Very different from a cervical collar! Do people like that better or is that another YMMV thing?

So, as you can see, this was a magnificent leak night. I'll be going back to 6.6 and Scunci's and cervical collar. Thanks for the advice reinforcing that! I am going to crush this yet by golly with your help

[zonker]

I googled the Dr. Dakota collar. Very different from a cervical collar! Do people like that better or is that another YMMV thing?

i tried it, didn't like it. but that's ME. have read where other people like it better. one claim was that it's cooler to sleep in that a cervical collar.

so yeah, your mileage may vary.

[Pugsy]

A 0.2 cm change in pressure is nothing. That had nothing to do with the leaky mess you had.

You can make bigger changes if you want to....heck, I have done it myself. I don't practice what I preach.
But I always made sure that I had everything else locked down before I started with big changes in something.

FWIW....I don't wear the Bleep that low either. It barely covers the bottom of my nostril.

[bjhunt01]

A 0.2 cm change in pressure is nothing. That had nothing to do with the leaky mess you had.

You can make bigger changes if you want to....heck, I have done it myself. I don't practice what I preach.
But I always made sure that I had everything else locked down before I started with big changes in something.

FWIW....I don't wear the Bleep that low either. It barely covers the bottom of my nostril.

So Pugsy do you agree with djams that "Nope. Have to work with the cervical collar and tape to stop this. You're using the Dreamport, so you can be very confident your mask isn't leaking. Focus on finding a way to keep your mouth closed all night. Easier said than done, I know - I was also a mouth breather at night. For years and years. It isn't easy to fix." Is this the problem 99%. Should I change EPR at all?

[djams]

I googled the Dr. Dakota collar. Very different from a cervical collar! Do people like that better or is that another YMMV thing?

Definitely YMMV. I have the one linked below. It's a cheap knock off of the Dr Dakota, I think. I put this on, got in bed and just tried to get comfy with it and understand how it works. In the late afternoon. Laid on my back and sides. Never made it to the big leagues. Been sitting in the supply drawer. Unused.

Send me a pm with your address if you want me to send it to you to.

https://www.amazon.com/dp/B079C7HFGZ/re ... gDbFV7T200

[Pugsy]

Use EPR at whatever setting feels good to you. Should the reduction during exhale cause some obstructive stuff to happen ....we deal with it if/when it happens.

The mouth opening stuff....that's unlikely to be fixable with a magic tweak in the settings. You have to sort through the various options to figure out which one seems to suit your needs the best to keep the mouth shut for the majority of the time.
I wouldn't sweat the small stuff but remember anything that disturbs sleep is unwanted....no matter how big or how small.

Primary goal has to be decent sleep quality because without sleep none of this other stuff really matters does it?

[Tweety]

Tweety: I have a question about your picture. Your bleep tape looks to be lower than mine under your nose. You can barely see the tape under my nose. So it makes me wonder if I'm putting the ports on a little too high although I use a mirror and carefully aim them over my nostrils. Is there something I might change or was just the angle of the camera?

I googled the Dr. Dakota collar. Very different from a cervical collar! Do people like that better or is that another YMMV thing?

Hi Barbara, I do the same thing with the mirror and aiming the ports over my nostrils, and that's just where it ends up. I do have a long thin nose--I have to trim some off the center parts where they overlap, or the top one overlaps onto the other port. I'm still experimenting with what I can trim where.

I use the Dr. Dakota because I have a prominent occipital bone (aka I'm an egghead), and the full cervical collar stresses the muscles on the back of my neck.