Losing hope... no mask is for me?

recipefordisaster · Post by **recipefordisaster** » Fri Jan 22, 2016 6:35 am

As I've mentioned in previous posts, I can't tolerate anything on my nasal bridge... No matter how soft or loose it is, I get bad sores that aren't prevented with band-aids or anything like that. Nasal pillows were very irritating to me and I could not get comfortable with any I tried. I liked my Amara View but got very sore and chapped below my nose, and the "insignificant" but disturbing leaks were always bad despite trying two cushion sizes. I'm not a mouth breather, but air can build up in my mouth.

I finally got Dreamwear and liked the comfort, but had to start really working on keeping mouth puffs from occurring. That requires a lot of tape and a fleece band, which I don't love... But chin straps don't help as its just my lips that let little puffs out. I'm wearing nasal strips for the heck of it, too. Even they leave a mark on my nose! I've had a lot of trouble adjusting to Darth Vader noise (not exhaust, but inspiratory turbulence noise, mostly, with different expiratory noise sometimes), especially if I try to sleep on my side as I prefer.... I don't fall asleep easily on my back, but it's a lot quieter that way. I have had difficulty with getting the cushion positioned just right, and even with a mirror, it doesn't seem that there's a rhyme or reason for it. I can place it where I know it was working before and I will have a tough time breathing plus extra noise. Moving it around a ton can eventually "fix" it. Then, it will shift (even though my hair is over the strap which helps somewhat) and I'm back at square one. The mask is as loose as I can keep it without leaking, but I have a lot of soreness and redness under my nose now, too. I've tried it tighter to avoid shifting, and I feel it's pulling my nose up. I've tried small and medium cushions and think medium is harder to fit, but easier to breathe through.

We actually decreased my pressure to keep the noise down from Dreamwear, and my AHI is still fine, though I'm hardly sleeping which could account for that. It's below 1.2. I'm at a fixed pressure of 5 now, from 6, with EPR of 3. When the mask fits I seem to have plenty of air even at that low setting. Auto was making my pressure skyrocket to the top of the range, despite leaks of 0. Respiratory therapists believe that is due to lower airway obstruction.

The last straw was last night when I spent FOUR HOURS that I should have been sleeping tweaking my mask fit. I'm absolutely exhausted and very tired of the hoops I have to jump through in order to go to bed at night.

I'm very happy with a FFM, but not with leaks nor nasal bridge soreness. If Amara View fit me properly, I think that would be the ticket. I can't sleep with leaks even if I know they are minor. I'm very small, so it seems a lot of masks don't come small enough for me, anyway.

I'm about 8 months into therapy and really don't want to quit... But I NEED sleep instead of hours of aggravation while desperately trying to rest. My DME really doesn't have more ideas for me and from my research, I can't really blame them.

Sheriff Buford · Post by **Sheriff Buford** » Fri Jan 22, 2016 7:24 am

Hate to say this, but you need to look at the mask of last resort. Go to cpap.com and look at the Respironics Fitlife Total face mask. If you decide to give it a try... I'll help you.

Sheriff

lindalrc · Post by **lindalrc** » Fri Jan 22, 2016 8:00 am

I would look into the masks made by Circadiance - called SleepWeaver. They are fabric and come in sizes. Right now I am using a SleepWeaver Advance (small) - a nasal mask. Takes maybe 5 minutes of fiddling each night to get it set which is a nuisance, but, if it is just right, the seal is good. Also it does not swivel. And every 7-10 days I do not get it quite right which results in some sleep interruption. One other criticism is that the part of the head gear that goes straight up over the head leaves you hair in chaos in the morning. Their other nasal mask is the Elan which I am planning to try. This one does have a swivel and the head gear looks better designed. I understand that the Elan needs nightly adjusting too. SleepWeaver also has a full face version, but the reviews for the FF on CPAP.com web site are only middling.

When you first hold these masks, they seem almost like nothing. They take up no more room in a suitcase than a men's handkerchief. But they do work and because they are so light and are fabric they may bother your skin less. The Elan would completely avoid the nose bridge area. And it appears you are already used to some fiddling time. I find that I put it on sitting up and not attached to the hose. Then lie down and re-tweak. (My Advance gets the best seal if the side straps are snug.) Then attach the hose. BTW, they work best with a very light short hose that goes between the main hose and the mask. If you buy from our sponsor, that hose come with it (or can be bought separately). Don't know about other suppliers.

Good luck.
Linda

recipefordisaster · Post by **recipefordisaster** » Fri Jan 22, 2016 8:52 am

I considered both cloth masks and total face. The DME assures me that cloth leaks like crazy, and I was worried about "wind" in my eyes with a total face... that and I suspected they wouldn't go small enough for me. What do you think about those ideas?

My hair can't really get worse; with my current setup it's ridiculously bad.

I should mention that I have tried liners with all of my masks except Dreamwear. I didn't find more comfort or better sleep, but the leaks got worse.

Michelle-OH · Post by **Michelle-OH** » Fri Jan 22, 2016 9:16 am

Since there are kids who need masks, they must make some pretty small masks. I know I didn't see anything like that at my DME provider though, but you might check into what they use. Good luck!

49er · Post by **49er** » Fri Jan 22, 2016 9:25 am

recipefordisaster wrote:I considered both cloth masks and total face. The DME assures me that cloth leaks like crazy, and I was worried about "wind" in my eyes with a total face... that and I suspected they wouldn't go small enough for me. What do you think about those ideas?

My hair can't really get worse; with my current setup it's ridiculously bad.

I should mention that I have tried liners with all of my masks except Dreamwear. I didn't find more comfort or better sleep, but the leaks got worse.

Hi recipefordisaster,

I have heard the same thing about cloth masks leaking like crazy but I have generally had no problems leak wise with my sleep weaver elan mask. The last time I did, I was using the wrong side of my pillow.

I found this thread helpful in controlling the leaks although interestingly, it didn't help with my other masks.

http://www.apneaboard.com/forums/Thread ... ight=masks

If that doesn't work, go to this site which will take you to the You Tube Video for putting it on.

http://www.circadiance.com/sleepweaver-elan/

Best of luck.

49er

recipefordisaster · Post by **recipefordisaster** » Fri Jan 22, 2016 9:35 am

The DME told me that pediatric masks are "horrible", that they leak and are uncomfortable... that's why I haven't tried them.

Thanks for the ideas. I don't know whether I'm in my 30 day trial and can switch masks again, or if I have to wait until June...

49er · Post by **49er** » Fri Jan 22, 2016 9:49 am

recipefordisaster wrote:The DME told me that pediatric masks are "horrible", that they leak and are uncomfortable... that's why I haven't tried them.

Thanks for the ideas. I don't know whether I'm in my 30 day trial and can switch masks again, or if I have to wait until June...

DMEs aren't always right just as an FYI. If you are in your 30 day trial period, you might want to pick the mask that you think has the best possibility of working. What do you have to lose?

49er

recipefordisaster · Post by **recipefordisaster** » Fri Jan 22, 2016 11:36 am

I very well may try on some more masks. To my knowledge I have only a total face mask, pediatric, or cloth mask to try at this point. I have an appointment Thursday for this. I would love to know what my best options are, which one to try first.

The only thing I have to lose is more sleep and more intact skin... If I have a bad first night, I'll have to go back to Amara until a week later when I can get back into the DME.

49er · Post by **49er** » Fri Jan 22, 2016 12:03 pm

recipefordisaster wrote:I very well may try on some more masks. To my knowledge I have only a total face mask, pediatric, or cloth mask to try at this point. I have an appointment Thursday for this. I would love to know what my best options are, which one to try first.

The only thing I have to lose is more sleep and more intact skin... If I have a bad first night, I'll have to go back to Amara until a week later when I can get back into the DME.

I just realized that you might want to call the DME ahead of time to make sure they have these masks in stock. My DME wasn't even able to order the cloth mask which I should have protested loudly about but didn't for various reasons.

And since Sheriff is right about the total face mask being the one of last resort, you might encounter a similar situation.

I hope I am wrong but better to be safe than sorry.

49er

recipefordisaster · Post by **recipefordisaster** » Fri Jan 22, 2016 12:27 pm

Thanks for the idea, I'll call and ask... But am not sure they will order all of these for me to try. I'd sure like to see them all in the office.

49er · Post by **49er** » Fri Jan 22, 2016 12:36 pm

recipefordisaster wrote:Thanks for the idea, I'll call and ask... But am not sure they will order all of these for me to try. I'd sure like to see them all in the office.

Do you have other options for DMEs or is this it? I don't blame you for wanting to see them in your office.

49er

chunkyfrog · Post by **chunkyfrog** » Fri Jan 22, 2016 1:28 pm

Been there; anything squeezing my upper nose, closes it up. I just do NOT go there.
Tried the Fitlife--hubby loves it--I got HOT, and not in a good way.
Tried the Anew, too leaky--in spades, but the Elan worked pretty good.
Amara View-- if only they made an extra small . . .
The only full face that worked AT ALL was the P-R Comfortgel,
but I had to alter the headgear to fit my size 6-1/4 noggin. (I would try a CG Blue if they made a small headgear.)
It took me over 20 Masks to find a mask I could wear every night. For the first couple years,
I switched back and forth between the two least miserable.
I am so attached to my P10 that I have FOUR. I still mouth-breathe, but I got water for that.

Sheriff Buford · Post by **Sheriff Buford** » Fri Jan 22, 2016 2:57 pm

The air in the Fitlife only comes in around the mouth... not the eyes.

Sheriff

tiredandscared · Post by **tiredandscared** » Fri Jan 22, 2016 3:34 pm

the elan soft cloth will seal good if you meticulously follow the instructions. But the problem as always is comfort. The lower seam irritates my philtrum area(the are between my nose and upper lip). But if you can tolerate that, it won't be an issue at all. It seals rather well. The only problem is the darned hardened seam.

I'm in the same situation. I've just about given up on making the CPAP therapy work. Not only can't I find a proper mask, the masks that I tolerate press too hard against my face, and the masks that don't press hard against my face, I have problems tolerating. It's like a situation catch 22.

I'm going to buy another 1-2 masks. If I can't one that works, i'll simply just try another solution.

Losing hope... no mask is for me?

Losing hope... no mask is for me?

Re: Losing hope... no mask is for me?

Re: Losing hope... no mask is for me?

Re: Losing hope... no mask is for me?

Re: Losing hope... no mask is for me?

Re: Losing hope... no mask is for me?

Re: Losing hope... no mask is for me?

Re: Losing hope... no mask is for me?

Re: Losing hope... no mask is for me?

Re: Losing hope... no mask is for me?

Re: Losing hope... no mask is for me?

Re: Losing hope... no mask is for me?

Re: Losing hope... no mask is for me?

Re: Losing hope... no mask is for me?

Re: Losing hope... no mask is for me?