Frustrated!

[AmyE]

I've had the machine for 4 days, and each night has been successively worse! Last night I finally took the mask off around 2am--I just couldn't take it anymore. I seem to be okay for the first few hours, but as soon as I change position, the mask moves and I start getting whistling and I can't get pillows seated properly again. I can't seem to breath well through the mask after this happens. The mask seems to work better with the hose going down, but that doesn't work well if i'm trying to roll over. If the hose is pointing up, then it seems to pull the pillows out of the right alignment and I get whistling.

When I finally pulled off the mask, I realized that I was stuffy on one side. This usually doesn't happen anymore--I've been on allergy shots for 5+ years (I am very sensitive and tested positive for everything but cockroaches!) and I take Zyrtec and Patanol eyedrops every night. I suffer from dry eye anyway, so I always have Soothe drops on my nightstand. I do seem to be needing them more with the cpap, though. I usually do the Neti Pot as well, and had done this last night.

I woke up on my stomach with my face in the pillow. This is how I like to sleep, and I know that is impossible with the cpap. I did try the falcon position with the mask (my second favorite position anyway) but I couldn't get comfortable. Nothing seems to be working with the mask--I felt the straps digging into my ears even.

I am using the small pillow--I started with the extra small but couldn't breath well through it. The medium didn't fit right--I have small nares (?) and they are more parallel to each other---the medium pillow seems to angle them too much.

I am so frustrated because my first night was actually really good! Please help!!

[PAPalogical]

Amy - good news - you're on the right track: checking out the cpaptalk forum and asking questions. Problems and frustrations seem to be par for the course - try to keep up the spirit - tons of folks have gone thru this before you, with similar experiences, and lots of them were able to eventually find the right solution.

I'm only ~3months in, and had very similar problems - my sleep got worse and worse initially, as I struggled w/ the mask. I'm on the Swift LT now, and much, much happier w/ general fit & comfort, but if I have the hose pointing up, it tends to "roll out" for me, and I can have trouble getting it re-seated right and staying there. And it can definitely make you feel "suffocating" if it gets in the wrong position.

Are you using any kind of "hose hanger"? It helped me deal w/ "mask pull" and general hose problems by keeping it up and out of the way when you roll over. I use a home-made / PVC version, but search around and see what you like
viewtopic.php?t=5006

There's also tips & tricks on how to overcome specific mask problems - check out RestedGal's compendium:
viewtopic/t39955/viewtopic.php?f=1&t=15 ... al#p127492

At 3 months in, and I now have 2 drawers w/ my CPAP "stuff", as I keep experimenting. I'm upto 6-8hrs of therapy at night, and my AHI is hovering around 5-6, so I'm getting better at it, but still have a ways to go.

[SharkBait]

Argh, I don't like hearing that someone is having problems and certainly don't like hearing about the ditching of the mask, although I certainly understand.

Have you tried Lanolin for your nares to help with the seal? Makes a big difference for me. I'm a pretty active sleeper, but then again I don't roll to my stomach in my sleep. A "pleasant surprise" for me with my chin strap is it tends to keep the mask in place a little better. I have those lower straps on the Swift LT fairly snug, but the top straps I let be a bit loose because the pillows aren't designed to be scrunched up tightly to your nose. Then I go over the top of it all with a Resprionics chin strap and then I run the strap over the masks "arms" to help hold it down. I use this even with mouth taping for this reason.

I also use a PAP pillow (home made) to help with the bumping.

Also, make sure those inner walls are DOWN. When you run water through them they can fold up and that just will not work.

The problem you describe is what I have experienced with the Liberty mask. It is a hybrid style with the dual walled nasal pillows on top of a mask over the mouth. The fit and feel is really nice, but whenever I roll in my sleep I bump the mask and it knocks the pillows loose. This has made an otherwise nice mask unsatisfactory for me. If I would lie still on my back it would be great, but I don't sleep like that.

The fix for that was going to a conventional FFM such as the HC432 along with a PAP pillow. I say this because perhaps you need something bulkier but more sturdy since it sounds like you move alot in your sleep.

Good luck and HANG IN THERE!

[SharkBait]

The mask seems to work better with the hose going down, but that doesn't work well if i'm trying to roll over. If the hose is pointing up, then it seems to pull the pillows out of the right alignment and I get whistling.

You might also look at a 10 foot hose that will allow you to secure the hose somewhere but still have plenty of play in the hose.

[AmyE]

Thanks for the input! I ditched the PapPillow last night as well--my neck has been killing me and I thought it was because the pillow is so hard and I'm used to a very soft pillow.

I am afraid to go to a ff mask-the idea itself makes me feel claustrophobic!

I have a hose hanger on order from cpap.com.

I don't have any lanolin but I have the Ayr and used it--does it work the same?

[rested gal]

Amy, I would not be able to use my favorite mask at all if I did not "cradle" the nasal pillows with an extra strap. A homemade strap -- the leg cut off a pair of pantyhose tights. I place the extra strap under the nasal pillows holder and route it up toward the top/back of my head.

Here's a link to some drawings to give you ideas about routing:
Using homemade straps -- useful for stabilizing masks other than just the one shown.
Using one or two homemade straps with the Headrest nasal pillows mask.
http://www.tnlc.com/Lara/laura/osa/aura-strap6ways.jpg

I use a doublestart knot to tied the ends:
DoubleStart Knot How to tie a flat knot behind head when using a homemade strap.
http://www.fieggen.com/shoelace/doublestartknot.htm

The extra strap acts like a sling to stablilize the nasal pillows up and against my nostrils. I can toss and turn, smush the side of my face against any pillow, and the nasal pillows stay put.

The homemade strap doesn't have to be worn tight at all. Barely snug. Just "being there" helps steady the nasal pillows part, much like just the tiniest touch of your fingers against the front of a mask can stop a leak.

I also use a homemade hose hanger, to keep the hose up and out of the way, and to keep the hose from tugging at any mask when I turn over.

I've not tried using the "tights leg" strap on a Swift LT mask, but I'll bet there would be a way to do that.

There's nothing more frustrating than mask troubles. A "tights leg" might just do the trick.

Good luck.

[AmyE]

Amy, I would not be able to use my favorite mask at all if I did not "cradle" the nasal pillows with an extra strap. A homemade strap -- the leg cut off a pair of pantyhose tights. I place the extra strap under the nasal pillows holder and route it up toward the top/back of my head.

I will be trying this tonight--thank you SO much!
Amy

[SharkBait]

Thanks for the input! I ditched the PapPillow last night as well--my neck has been killing me and I thought it was because the pillow is so hard and I'm used to a very soft pillow.

I am afraid to go to a ff mask-the idea itself makes me feel claustrophobic!

I have a hose hanger on order from cpap.com.

I don't have any lanolin but I have the Ayr and used it--does it work the same?

I haven't used the Ayr, but I don't think it has the "relief" properties that Lansinoh has. Lansinoh Lanolin is sold for nursing mommies having problems with soreness from breast feeding, and the reviews on that is that it's a BIG help. I believe Ayr is just for keeping sinuses from drying out.

I finally cut into my Tempur-pedic pillow to make a PAP pillow because my other pap pillow was "too tall" and was causing me neck pain...

Some have found that wearing a FF mask while watching TV, without air at first and then with air, has helped them ease into a comfort zone. I'm not claustrophobic so I don't know.

[ozij]

....and if the tips don't work, remember: There are many different masks to choose from. A mask may fit 95% of the population, but if you belong in the remaining 5%, you need another mask. Not saying that's the case -- just reminiding you of the fact, so you don't let frustraion overwhelm you.

Good luck
O.

[Gerald]

Amy.....

The lanolin we use is "Lansenoh" for nursing moms.......you'll find it in the baby section at your drug store.

Also, I find that a "down filled" pillow is the best for me.

Finally.....listen to the advice from Rested Gal (the "mother superior" of CPAP) and the Shark.....they both have "good heads" that won't steer you wrong.

It'll get better.

[Debjax]

Amy, hang in there.

My husband cannot use the nasal pillows either, he had the same problems you did. (That's how I now have the Swift LT for Her, he couldn't use it). Try a different type of mask. He has had real good luck with the Mirage Micro nasal mask (not nasal pillows) and he no longer feels like he is not getting enough air.

[riverdreamer]

Just one more thing to add on the Swift LT. Mine came with nice soft strap covers, but if yours doesn't have these, it is worth making or purchasing them. The padding of the fleece covers helps stabilize the mask without the straps having to tighten. It also makes everything more comfortable. If your mask didn't come with one, check Padacheeks, they seem to be well loved here on the forum. I'm not sure about commercial links here, but just add the dot com to the end of the name.

Hang in there! At first, the CPAP is such a relief, but as that novelty wears off, and you realize this is for the long haul, you will have to find ways to make it work.

On the lanolin, I'm guessing it is more sticky than the Ayr gel, which I use, so it might help the pillows stay sealed. My sleep doctor actually suggested chapstick to help a seal stick better. Don't know if it would cause problems with the silicone. In addition to the hose hanger, I found that using the velcro fastener to hold my mask hose to the mask straps also helps prevent the hose from pulling on the pillows. You don't have to route it up over your head, I wrap it around the side I usually don't lay on, and then up, so it kind of follows the curve of my jaw and then up by my ear. If you like it better down, you could fasten it to whatever you wear for a sleep top. That limits the pulling to wherever the hose is fastened, instead of pulling on your mask.

There are so many ideas here on this forum, you should never have to just suffer through. Hope one of these works for you!

[TheDreamer]

Ya...it might be time to look into trying a different mask. Something of more substance that will stay in place when you sleep face down. Not sure off hand what that is. How the mask will exhaust when sleeping face down, guess that'll require a lot of experimentation.

I know when I started with Optilife, the biggest complaint was if I moved...it would leak. Especially the side of my face is buried into my pillow, which is normally how I sleep. Only need one nostril to breath....sure feels weird though with the nasal pillow mask when that happens now.

Someday I think I'll revisit using a nasal mask...but right now I'm not all that keen of doing trial and error to find one.

The Dreamer.

[plr66]

Amy, prior to my dx and starting tx for OSA 7 months ago, I was almost exclusively a stomach sleeper. I want to encourage you, as many others already have, to just be really diligent and persistent and to not give in to your frustrations. I was feeling so nearly-dead before I was diagnosed, that I was/am obsessively motivated to make cpap work for me. Seems like it took about a month for me to adjust to sleeping on my side and to dealing with the hose---waking up every time I needed to roll over to the other side, to carefully lift the hose so that the mask would not be tugged out of position, and making sure that my CO2 vent was not obstructed by the pillow or covers. It actually does become a habit requiring less conscious effort, and seemingly, I do not wake fully now when doing this.

Amy, you are really early in your therapy. Even during my first month of adjustment to these new positions during sleeping, I was starting to notice positive changes in how I was doing while awake...and that kept me going. I am convinced that attitude has everything to do with success, since I never would have dreamed that I could sleep without being in my most comfy position on my stomach. Do try a couple of less expensive pillows such as contoured memory foam ($12 at Big Lots) and Shapeable Pillow ($12 at Target) to see if either help you keep your mask from becoming dislodged. PaPillow actually works best for me, but I punch it a bit to fluff it every day so it does not seem so hard nor too high anymore.

Edited to just add that I find the Swift LT works best with the hose down and under the covers. Zero rainout with HH on a low setting, and the pillow does not jam up against my nose. I've just fiddled with the straps to decrease the cutting against my ears.....plus the addition of Pad a Cheeks!

[araminta]

As much as I liked the design of the Swift LT nasal pillows, I just couldn't tolerate them for sleep.
It's been about 3 weeks now that I've been using the Fisher Paykel 407 nasal mask, and am liking it a lot.