Me again, new rig and major leakage

[angryquaker]

Greetings. I've probably not posted enough to be easily remembered amongst you all, but I started my PAP adventure back in August-ish with a second-hand Dreamstation and a collection of masks. Just me, the gear, and this board. I struggled at first, and eventually chugged along til I was doing more or less OK. Not feeling any better to speak of, but looking better by the numbers, so to speak. I've changed jobs since my last post (new position, still at the same company), and changed bands (drummer, weekend warrior rock-n-roll cover band). Lots of changes. To wit:

Just about one month ago, the medical-industrial-complex finally (after 9 months) favored me with a new ResMed AirSense 10 AutoSet, heated hose, and I've tried a couple new facial interface apparatus. I apparently mouth breathe a lot more than I ever imagined. I tried a FFM (F20), and positively hated it. Woke up a couple times with it in my mouth, basically chewing on the bottom of it. I've also tried the P10 pillows which is fairly awesome, and a couple different chin straps. I think I've decided the chin straps are not really for me, either. I'm pretty sure it's the mouth, not the pillows, that is the source of the significant leakage, which can be observed in the two following SH charts:





I have SH set to flag leaks over 27 l/min, right? For the ResMed?

I've noticed this AirSense uses a LOT more water than the Dreamstation ever did, with both set to half the available humidity. It uses a full tank most nights, and has even run dry a couple times. I've also noticed irritation on my nostrils and in my nose, up to and including a good old fashioned sore on the left side. I've been using Lansinoh before bedtime for quite a few weeks now, and the irritation seems to come and go. Sometimes it's not so bad, other times it's bordering on miserable. The P10 isn't adjustable, so I don't know if it could be too tight or loose, but it feels fine. And I've adjusted the humidity on both machines up and down; right in the middle seems to be as good as anything, so that's where I've landed for that.

In other news, and most likely the most important news I've gotten in some time, I've apparently been bestowed with some slight sinus issues, and a rare condition called a "cholesterol granuloma" in my head, at the base of my brain. Awesome, huh? It's not as bad as certain other things could be, so I'm counting my lucky stars, honestly. Regardless, I suspect it could be exacerbating if not downright causing the OSA. It's darn near the size of a ping pong ball, and producing "mass effect on the petrous right internal carotid artery, Meckel's cave, right trigeminal, facial and vestibulocochlear nerves." Quoted from my latest MRI report. Not written by fans of the Oxford comma. Hopefully I'll get this whole thing cleared out soonish, and hopefully a whole bunch of weird symptoms I've endured for years will also clear out. I'm seeing specialists at one prestigious university hospital now, and if they don't get on the ball, I'll be heading over to another, more prestigious university hospital before long.

In the meantime, I'm completely open to suggestions on improving my PAP therapy in general, and my comfort more specifically. The nice respiratory therapist lady at the DME is friendly enough, and I'm sure she means well (I trust too much), but I don't think she has sufficient training or experience to really help me drill down into this stuff. Based on the conversations I've had with her thus far. So your help is welcome.

-Russ

[ChicagoGranny]

angryquaker

Sorry, I didn't have time to read your message, but I do want to post these general tips:

To reduce unintentional mask leak -

- Make sure the mask is fitted properly. (See mask manufacturer's video.)

- Make sure the headgear is adjusted properly (See mask manufacturer's video.)

- If you use a low ramp pressure or a low minimum pressure, you should fit and adjust your mask at the higher pressures it is operating at for most of the night. You would temporarily change the machine pressure settings while you do the fitting and adjusting. It's best to do this well before bedtime before you are tired and ready for sleep. Don't forget to change your settings back to the ones you prefer.

- Make sure to use good hose management - the hose should not pull on the mask. Notice how your hose is positioned between machine and mask. It should be positioned to minimize any pull on the mask. Hose management is an individual practice. How it is done depends on the mask, the position of the machine, your sleeping position and other factors specific to the individual.

- If you still have problems, learn from the forum what mask liners are available.

- Start a thread in cpaptalk asking for help. Subject: Need Help with Mask xxxxxx

- If your mask still has excessive leak, try other masks. Many people report trying several masks before they find one that works well for them.

Note: Links to just some of the mask manufacturers' instructional videos can be found on the forum host's website - https://www.cpap.com/cpap-masks.php and https://www.youtube.com/

- CG

[Rainmom17]

Have you tried a mask liner at all? I use a Padacheek liner for my FFM, and a liner might help you with problems like chewing the mask. Some other folks on here could direct you on how to make your own with an old t-shirt (I think) which would give you a chance to try it out.

[Julie]

Some of us (tho' not all) had to try up to 15 masks before finding the right one... go to Cpap.com and check out the very many FFMs with pix, reviews, etc. etc. If you need one, you need it, but you don't have to put up with the one you have.

[Okie bipap]

Have you considered trying a firm foam cervical collar? My wife and I both use them. It prevents out chin from dropping and causing the mouth to come open. We both had problems with the mask getting in out mouth when our mouth opened. That problem was solved by the cervical collars.

[JimW159]

Are you able to sleep in one position throughout the night, or do you change positions frequently? If you move about, an FFM might be more problematical than a mask with a smaller profile like the P10 referenced. In which case, finding a mechanism to minimize either mouth breathing or mechanical interference with the interface. Certain characteristics generally tend to help:
1) Pivoting connection between the mask and the hose (this allows the head to move more easily without tugging too much at the hose)
2) Ability to route the hose either under the covers or over the head (this either anchors the hose to a degree or creates a nexus of rotation so when the head moves it moves about that point)
If you do stay somewhat stable in one position the following may help:
3) If you sleep on your side make certain the pillow is neither pushing the mask aside or covering the exhalation port
4) If you are a back sleeper, you might consider a mask that provides an oral interface as well as nasal - not exactly an FFM but a variant, a hybrid. There are two models available at this point. The most popular is the ResMed Liberty https://www.cpap.com/productpage/resmed ... dgear.html
Less popular (this may well reflect brand awareness influence) but significantly more flexible and adjustable is the InnoMed/RespCare Hybrid https://www.cpap.com/productpage/RespCa ... -Mask.html
An excellent review of the InnoMed/RespCare Hybrid that discusses the differences between the to can be found at https://www.youtube.com/watch?v=EBoVis-OStY
The same person discusses the Liberty at https://www.youtube.com/watch?v=nU3wTC2xrT4

[jagzoo]

I ditto the suggestion to try using a firm foam collar. Only costs about $10 to try. It might very well let you use one of the nasal pillows or Dreamwear mask. It keeps my chin from falling down/opening my mouth and causing leaks. With it - No leaks but if I forget it - I wake up almost instantly with air escaping from my mouth. Nasal pillows are so unobtrusive that CPAP just isn’t a big deal.

[jagzoo]

I ditto the suggestion to try using a firm foam collar. Only costs about $10 to try. It might very well let you use one of the nasal pillows or Dreamwear mask. It keeps my chin from falling down/opening my mouth and causing leaks. With it - No leaks but if I forget it - I wake up almost instantly with air escaping from my mouth. Nasal pillows are so unobtrusive that CPAP just isn’t a big deal.
Good luck.

[Julie]

NOT a 'firm', but a soft cervical collar...

[JimW159]

NOT a 'firm', but a soft cervical collar...

Absolutely - firm is often extremely uncomfortable and can make it virtually impossible to get a good night's sleep.

[palerider]

I've noticed this AirSense uses a LOT more water than the Dreamstation ever did, with both set to half the available humidity. It uses a full tank most nights, and has even run dry a couple times.

Excessive leaks lead to excessive water usage.

[angryquaker]

I may try the cervical collar thing, although my natural inclination is to have less paraphernalia on me at bedtime. I wonder why I seemed to do so much better with the Dreamstation. I typically fall asleep on my back and sleep that way a lot, to my knowledge. When I wake up thru the night (less frequent these days), I'm usually on my back. I've been routing the hose overhead since I started PAPping. If the headgear isn't set up for it (like this exceptionally unobtrusive P10 headgear), I'll use a hair tie to fashion my own cinch for the hose, so it's "anchored," such as it were, to the top of my head. The RT lady at the DME showed me a hybrid mask, I'll probably try that, too. She said I should have 30 days to try out different masks at no cost. I messaged my insurance company to find out for sure, as I'm on day 29 today.

-Russ

[Julie]

There are many ways to train yourself not to back sleep, from stuffing towels into a back or fanny pack, to use foam wedges behind you (tho' they may need propping against a wall or risk slipping on sheets), etc etc. And your AHI will surely go down if you can do that.

[ChicagoGranny]

NOT a 'firm', but a soft cervical collar...

Absolutely - firm is often extremely uncomfortable and can make it virtually impossible to get a good night's sleep.

The correct terminology for cervical collars used by CPAPers is "foam cervical collar". What you are eschewing are rigid cervical collars.

Foam cervical collars come in varied levels of firmness - soft, medium, firm, and extra firm.

I prefer this brand in the "firm" model, 4-inch height: https://www.walmart.com/ip/DMI-Universa ... e/23057188

[angryquaker]

So...stopped by the DME again yesterday, fully expecting to try a different mask, since they said we could try different masks for up to 30 days without any extra cost. I got the "Sorry, only one mask change allowed, but you're welcome to pay out of pocket" line. I didn't have the time or energy at that moment to fight about it very much. I did mention something like, "So my insurance company will pay for ineffective treatment?" To which the reply was, "No, you're eligible for another new mask in six months." And my favorite part, she said, "If we just gave away free masks, we'd have a line out the door to the street all day every day, and I'd lose my job."

So...I swapped out the medium pillows on my P10 for the large. My nose feels much better today. I'll probably try the cervical collar tonight, and start trying to get the leakage under control. And maybe fight the DME another day.

-Russ