Yet Another Frustrated Newbie...

[Atlea]

I've been lurking around here for weeks and am just now getting the courage to post.

After being diagnosed with OSA, I received my Cpap machine Jan. 21. I have gone to bed with good intentions every single night, and yet, have only managed to keep the mask on all night ONCE.

I have the Resmed S8 Elite machine and have tried three different masks. I started with the Mirage Swift II nasal pillows and have also tried the Respironics Comfort Gel nasal mask and the Breeze. I think the nasal pillows might be too harsh for me, but the comfort gel was leaking into my eye no matter how I adjusted it, and the Breeze just wouldn't stay on at all. I keep goign to back to the Swift (as that one night I kept it on, that was the one that I wore), but it's just not working for me.

I am so frustrated. When I was first diagnosed, I was really upset about it, but then worked hard to turn my way of thinking around and decided this would change my life for the better. But so far, it hasn't.

I called my DME, and she was at a bit of a loss. I have a very small nose, and apparently there aren't that many options for me. I'm supposed to go back this week to see her.

I even bought the PurSleep system, and while it's lovely, it hasn't done anything in the way of helping me keep my mask on at night. I have tried different ramps, no ramp, etc. My pressure is set at 9.

I guess that maybe I am posting because I need some encouragement to stick with this and not give up. I feel a little alone in this journey, so perhaps I just needed to vent a bit? At any rate, thanks so much for listening (er, reading.).

[RipVW]

Hello & Welcome, Atlea! Glad you found this forum--SO much useful info and SO many helpful people here!

I had to start out with a Full Face Mask--still use it most of the time.

Hang in there--this just takes a little time, but it WILL be worth it if you persevere these issues will all have when we begin.


"You are getting sleepy . . ."

[TerryB]

The beginning can be very difficult in this therapy and even worse, you won't know how long the beginning is going to last until you are over the hump. The mask is by far the worst part. Concentrate on finding a good fit there and improvement will be huge. I have used around six different masks in two years and only used a cushion for the first one all the rest have been nasal pillow or sirect seal type direct to the nostrils. Working only with the seak to the nostrils instead of larger or much larger still (full face) sealing areas makes sense to me.

Good luck, I hope your DME is able to help you find a good fit soon.
TerryB

[Wulfman]

Welcome to the forum.

Hang in there. If you could fill out your profile with the equipment and your setting, it would help for further posts.....even though you've told us in this post what you have.

Are you taking the mask off....unconsciously? Or, are you taking it off deliberately?
Either scenario can be common for new users.....as it's not "normal" for us to sleep with something strange strapped to our faces.

What seems to be the main reason you're taking it off?

Den

[Atlea]

Are you taking the mask off....unconsciously? Or, are you taking it off deliberately? Either scenario can be common for new users.....as it's not "normal" for us to sleep with something strange strapped to our faces.

Yes, I'm doing it unconsciously. I started out where I would take off the mask and turn off the machine without knowing it. Now I've gotten to the point where I just take off the mask and wake up to it blowing on me from my pillow.

I like the idea of the nasal pillows the best, but I think they might just blow too directly for me.

Thanks so much for your replies. It's affirming to know there are others out there!

[auntjenny]

I too have a tiny nose and the only mask that I've found works so far is the FlexiFit406. I'm not in love with it but it doesn't leak and it was my only real option.

[deerslayer]

WELCOME Atlea, vent away. we're all in the same boat ! good luck w/ your mask quest , U have already found out there is no magic solution. never give up *

[SusanD]

Did you know that the Breeze has about 5 different adjustment "points"?? Pull the middle piece, all the way down to almost where your head meets your neck. Then push "up" on the front of the mask. That will make the nose "cup" over your nose. That part will also adjust so that you can get a good seal. Tighten the straps on the sides so that they are secure against your head. I sleep with the Breeze with the Dreamseal almost every night and I have a head FULL of thick, curly hair, and it stays on my head. The trick is realizing that there are several adjustment points.

Susan D.

[goose]

Welcome Atlea!!! You've found an excellent place for support and information....Take a look at the yellow light bulb (Our Collective Wisdom) and the red balloon (CPAP FAQ). You'll find all kinds of info there. Look for info on the masks you've tried to see how others have made it work for them.

I've used the ComfortGel mask and my biggest complaint is the eye leaks, so you're not alone there. I tend to leave the lower straps fairly loose and the upper straps as loose as I can and still not have leaks -- the secret is to not have it so tight that the silicone seal can't inflate -- you don't want the blue part to ride on your face. I push the silicone seal inwards at the top and along the sides until it doesn't leak (I also use a medium and may need a small so for me it may be a size issue). It takes some doing, but I've made that one work. I presently use the AEIO Headrest (similar to the breeze). I've been using it for quite some time and really like it. Recently I've also added the NA II (Nasal Aire II) to my mix of masks.

Masks are the "Holy Grail" of xPAP success, so you're on the trail....
If your DME will let you try numerous masks until you find one, take advantage of that service (not many of us have that option). You might want to try a Full Face mask as well.....Each mask has it's own idiosyncrasies, so you have to work with each. I don't know of any that work right out of the box....

You're not in the boat alone Atlea, believe me. There are a whole lot of us out here, so please don't give up -- if you have questions, ask away. There will usually be someone here that will venture an answer for you.

By all means, keep us up on how you're doing - it sounds like you've got a great attitude towards your treatment and that can be a big part of success....
Good Luck -- take care
cheers
goose

[sleeplessinaz]

Hello Atlea----I feel your pain too!!! I've used the ComfortGel mask and my biggest complaint is the eye leaks, so you're not alone there--I did find out that they have a size called --PETITE --so that one has worked better for me and doesn't leak. I am new and tried like 4 masks so far. I also used the Flexifit 407---I like the straps better on that one than the Comfort Gel. I also have the Nasal pillows---I did like them --but they leaked all over the place for me as I am a side sleeper.

SO like the other have said --it is like the quest for the Holy Grail to find a mask that is what we like, comfortable and no leaks in the eyes!!! YOU ARE not alone----we are all in this thing with some point of frustration at one time or another. I am barely getting to sleep 6 to 7 hours but it took me a long time to get there!! KEEP on----Keeping on!!!! We are here!!

Carrie in AZ

[Claire]

Hi, Atlea: Welcome and hope all our input helps.

I have the Comfort Gel but also had major leakage around the eyes. Extremely frustrating. My nose is thin, and I figured that was the problem. (I have the small size as well). The Comfort Gel allows you to reshape the blue section--check the section on Customizing in the booklet. So I customized, heating up the cushion and then pushing it on my nose so it made a tighter fit around the bridge.

That helped a lot but not entirely. So now I also do what another poster mentioned...I pull in the seal around the bridge and sides as I put the nasal mask on...then I clip the side in. I have almost no leakage to speak of.

This isn't to say that the Comfort Gel will be right for you. As this message board shows, everyone is different. But don't give up...that's the important part!

[rested gal]

Atlea, everyone's right about the mask being the single most difficult thing to "get right" in the treatment puzzle.

You said you didn't think nasal pillows interfaces were "for you", having tried several.

They wouldn't be for me either, if I didn't use a homemade strap to cradle the pillows better and steady them better than most of their own headgears do. WITH the homemade strap, nasal pillows are by far my favorite masks.

The Breeze, for example, that you tried and couldn't keep the headgear on. In addition to the many adjustment points that Susan D mentioned, there's another trick that made the Breeze work great for me when I used it for a year or more -- putting that extra homemade strap down very low around the front. Helped stabilize it more and kept the nasal pillows in place for toss 'n turn sleeping. Also, it's good to rig a way to hang the main air hose overhead (from wall or headboard) so the air hose doesn't tug at the headgear when you turn over or move your head. That's a helpful hint for many masks, btw...getting the hose up out of the way:

LINKS to Hose hangers and methods of managing the air hose
viewtopic.php?t=10640

If you'll go to the next link and look for Lab Rat fixes for some of the nasal pillows masks you've tried that didn't work for you, you might get some ideas about ways to change yours. Often a "fix" can turn an usuable mask into a favorite mask:

LINKS to Lab Rat Trophy awards
viewtopic.php?t=15104

Back to the Breeze for a sec.... you mentioned having a small nose. I think most DMEs who fit people with nasal pillows choose smaller size pillows than what actually work best. If you were given the light blue colored pillows ("small") for the Breeze you might want to try the Large (light green.) I'd skip the Mediums (clear) as the clear silicone, for some reason, is stiffer...not as smushy soft as the colored sizes of pillows for the Breeze.

The Breeze's Large pillows are so flexible, they seal great around the outside of the nostril openings...don't have to be pushed in at all to seal. Just the open tips will be inside the nostrils and the soft silicone outside will do the sealing. But do use a stretchy soft homemade strap to steady the pillows in place better.

You can get ideas of ways to route one or more homemade straps here:
http://www.tnlc.com/Lara/laura/osa/aura-strap6ways.jpg


Anywayyyy.... there are ways to make a lot of unworkable, unusable masks suddenly "fit." Do check out the Lab Rat fixes.

[alnhwrd]

Welcome to the forum. The "venting" light is always lit, so feel free to come back as often as you like.

The nasal pillows never worked for me, either in my sleep study or at home, but my sleep doc says that in his experiance a lot of people really like them once they get used to them. I haven't yet.

Regarding the Comfort Gel, and nasal masks in general, there are a couple of things to try to help reduce the leaks. First, always wash your face before bed with a a non-antiseptic soap. I use Neutrogena bar soap myself. The mask seals better on a clean face. Second, you may have to keep fiddling with the adjustments. I spent a lot of time the first weeks laying in bed, ripping velcro straps on and off and adjusting them incrementally to try for the perfect seal. I now use Mack's silicone earplugs around the edge of the cushion and have almost no leak problems. You can search for threads talking about how to do this using the site's search function. Hopefully you will sleep well soon!

[Nodzy]

Atlea,
Welcome to the (IMHO) best information and self-help destination on the web for OSA sufferers.

Venting is always appropriate, because between points of frustration.... facts emerge that offer some insight into your needs and what you don't need.

Most on the board have been where you are, or very close. Most found their way to good to great therapy through others here offering their experience(s) and knowledge. The key is.... Do Not Give Up.

The answers that you need for the therapy to work best for you may not be staring at you, but they're not so far away either. People here... most... thrive on helping others achieve great therapy.

Visit often, read much... and ask any question at any time. No question, however seemingly weird or irrelevant, is worthless. Probably... someone has asked or wondered the topic before. Or, it needs to be "fronted" for others to learn from and with too. Good luck....

Nodzy

[ozij]

Welcome, Atlea.
No need for me to give more tips just now. Just to tell you that my beginning was pretty terrible too, and that it takes time. You're not alone, and when we say hang in there, we mean: Hang in there, don't let go, and come back for our help as much as you need.

Here's a classic on setting up the Breeze

Good luck,
O.