I'm almost done with these masks & cpap therapy

[tbas]

I'm starting to believe that I'm never going to get help from my cpap therapy. I'm only on it for almost 2 months and already have been through 6 masks! I have a new DME, new doctor and new machine, so I thought finally I was on my way. The new DME brought me a F & P flexifit mask. I was so hopeful, but the damn thing leaked soooo much, it woke me up with the loud funky sounds. (and my pressure went from 8 to 15.5) Now on Friday, they sent a comfort gel FFM, and I still don't feel better. That mask starts out feeling fine, but then is uncomfortable and hurts my face. The first night of my machine change, I got a small taste of feeling better the next day, so I was happy thinking everything was going to work out. Instead, the day after that I felt as poorly as I have been feeling and I haven't felt good, since. Has anyone else had this much trouble and such trouble with masks. Please tell me what to do, before I give up!!!!!! I've heard of people who cpap therapy never works and I just don't want to be one of them!

[dave21]

First thing I'd suggest is don't give up!

Second thing I'd like to ask is are you a mouth breather or a nose breather or both? The reason why I ask, was I was pretty sure that I was a mouth breather when I started with treatment and requested a full face mask, but very quickly realised that I hardly ever breath through my mouth whilst sleeping and was able to move to a standard nasal mask and more recently to the nasal pillows.

From a comfortability point of view I like the ResMed Activa, I find this is the mask that leaks the least for me due to the active cushion that inflates. I'm not sure if you've tried this mask? I too used to find the comfort gel masks and other nasal masks. If you've had 6 masks in under 2 months I'm wondering if you're not giving the masks long enough. For instance it took me 3 weeks to properly get used to the Swift FX Nasal Pillows. You really want to try a mask for at least a week or two to get used to it and try various tightness on the straps.

It would also be helpful for you to tell us what your AHI is on the S9 and also what your leak rate is so that will tell us if you are getting effective therapy. e.g. your AHI on the S9 hopefully will be <2.

The other thing I'm not sure if you're changing or if your DME is changing on the S9 is that you need to change the mask type on the S9 when you change from a Full Face to a Nasal mask. You may be sticking with a Full Face and that won't make much difference but I thought it was worth mentioning as if you have the wrong mask setting it's possible that your treatment won't be 100% effective.

Thanks
Dave

[btesterman]

I'm not able to help you with the mask issues (there are many who have more experience and can) but I just want to encourage you to hang in. I started therapy mid January and I'm at a stage where I feel it's two steps forward, one back. I had a good weekend - didn't feel full of energy but I didn't feel like I just wanted to go back to bed and sleep all day. See my "Big improvement" post which I'll paste below. However, last Wednesday I left work early because I just couldn't function. Made the hours up another day. I've read posts of members who are 7 months into treatment when they finally see a difference. That may sound discouraging but I try to remember that my body is being helped even if I haven't started FEELING the difference. I hope you'll get the technical issues figured out. This forum is the best when you need help!

Big Improvement
I'm not "there" (whatever that is) yet and still have days that I want to find the nearest corner, crawl into it and take a nap BUT for those of you who might have read and remember my post before Thanksgiving - that I was just too tired to even think about cooking a Thanksgiving dinner - I wanted to share about today's Easter dinner. I've been on treatment since mid January and check out the difference: Thanksgiving dinner - brought in from Costco, husband cleaned up the kitchen. Christmas dinner - all preprepared stuff, son cleaned up the kitchen. Enter CPAP. Easter dinner - spent yesterday cooking banana bread and a great jello salad and dyed eggs for today, then made home-made chicken noodle soup for last night's dinner. Today after church I made home-made scalloped potatoes, a veggie casserole, cut up fruit for a fruit salad and heated the ham. Kids and grandkids were here. After they left I cleaned up the kitchen. I'm tired now but it's a "deserved" tired not the "I can't stay awake" feeling at 11 AM. Hanging in in spite of all the struggles with feeling like I was suffocating, taking off my mask and not remembering it, nose sore, etc. is beginning to pay off. There is light at the end of the tunnel. And DreamOn, maybe I CAN have everyone here for Thanksgiving dinner this year. (I'm joking, guys, don't make plane reservations yet.)

[Slinky]

Tbas, you have one h*ll of a good PAP there. I sure wouldn't be too quick to part w/it!!! Heck, I've been thru more than a dozen masks to find 2 that I like and am comfortable with and a third that is very promising. As Dave has said it doesn't sound like you are giving each mask a true chance to work or not for you.

I've had masks that seemed to work well at first, but by the 10th day I knew were NOT going to work at all for me. And I've had several that I knew w/in a week were NOT going to work for me. You might not even be getting and doing a correct mask fitting. Are you laying down with PAP turned on to your set pressure when you fit your mask? Do you lift your mask off your face to let the cushion refill w/air and then let it back gently on your face? Have you read the Mask Fitting tips posted here?

[BlackSpinner]

You know you wouldn't give up getting a pair of shoes that fit after trying on 6 pairs.
My daughter tried on a about a dozen bras before she found a 34 DDD that fit well and was comfortable. Why would you expect a mask to fit and work 100% the first time you tried one?

You have the choice - work at making this work or go down hill fast. Do you really prefer going down hill fast? I look at my mother with her wheelchair and ability to speak 2 word sentences and see the choices very clearly.

[Muse-Inc]

You know you wouldn't give up getting a pair of shoes that fit after trying on 6 pairs.
My daughter tried on a about a dozen bras before she found a 34 DDD that fit well and was comfortable. Why would you expect a mask to fit and work 100% the first time you tried one?...

Great analogy! I have what seems like an oddly-shaped foot (small toes, wide forefoot, really skiny heels) & shoes are a real PITA for me to shop for. As to bras, well...let's just say I went for at least 10 yrs without finding one that fit, let alone well; took finding a fitter with yrs of experience and a big selection to get a style that works for me.

If reading here tells us anything, it's that people wear their masks way too tight. Too tight messes with the seal and that creates those those awful mask farting noises. It's a challenge to find the right type of mask, then the right one (mfg) for your particular face, and finally the right adjustment of straps, looseness, precise position, etc. TBAS, you have my sympathy! Took me a few wks to get really comfortable when I had to go to a FFM and that was after I had the right one for my face.

Btesterman -- congrats! Good news on progress.

[Wulfman]

I'm starting to believe that I'm never going to get help from my cpap therapy. I'm only on it for almost 2 months and already have been through 6 masks! I have a new DME, new doctor and new machine, so I thought finally I was on my way. The new DME brought me a F & P flexifit mask. I was so hopeful, but the damn thing leaked soooo much, it woke me up with the loud funky sounds. (and my pressure went from 8 to 15.5) Now on Friday, they sent a comfort gel FFM, and I still don't feel better. That mask starts out feeling fine, but then is uncomfortable and hurts my face. The first night of my machine change, I got a small taste of feeling better the next day, so I was happy thinking everything was going to work out. Instead, the day after that I felt as poorly as I have been feeling and I haven't felt good, since. Has anyone else had this much trouble and such trouble with masks. Please tell me what to do, before I give up!!!!!! I've heard of people who cpap therapy never works and I just don't want to be one of them!

Some thoughts and reading between the lines......
The DMEs keep giving you masks that are notorious leakers.
If your masks are adjusted for lower pressures, they're most assuredly going to leak more at higher pressures.
You need to switch from APAP mode to CPAP mode at a fixed pressure. That will give you at least ONE "constant".....the changing pressures won't disturb your sleep and the leakage won't increase because the pressure is increasing.

If you don't change some of these things, you're going to be doomed to failure.


Den

[howkim]

The DMEs keep giving you masks that are notorious leakers.

Your comment stimulates these questions from me. Which ones are "notorious leakers?" Which masks are NOT?

I'm not interested in a comprenehsive listing (even if there is such a thing). Just some suggestions.

Thanks!!

[KatieW]

Finding the right mask is a challenge for all of us. I agree with Black Spinner's analogy of buying shoes or bras. :

If a DME is selling you masks, they should do a proper fitting, with you lying down, and your cpap at your usual pressure. Just handing you a mask is not acceptable. You wouldn't buy shoes or a bra that way.

One way to narrow the field is to go to cpap.com and complete their Mask Fitting Guide. You can then print a list of masks that might fit your measurements better. Resmed makes good masks, and I would suggest trying them, if you haven't already done so.

There are many comfort items that might make it better for you:

http://www.pur-sleep.com/products/produ ... category=6

http://www.padacheek.com/index.html

http://www.remzzzs.com/

And the head pillow makes a big difference also. I use a PapPillow, but others here like a buckwheat pillow, memory foam, etc.

It may help you to read and research on this forum to learn what works for others. I felt like Goldilocks...until I found one that was "just right".

[Wulfman]

The DMEs keep giving you masks that are notorious leakers.

Your comment stimulates these questions from me. Which ones are "notorious leakers?" Which masks are NOT?

I'm not interested in a comprenehsive listing (even if there is such a thing). Just some suggestions.

Thanks!!

I really can't enumerate them......I just recognize them from years of reading the forum. But then, not every mask is a leaker for every person. It's just that some seem to be more prone to it than others. The Comfortgel FF is a relatively new mask, but seems to be a problem for most people who have tried it. On the other hand, the original Comfortgel nasal mask (which could be custom fitted by a "boil & fit" method) was a good mask for most. The newer full face version apparently does not the "boil & fit" characteristics that the nasal mask did. As far as the F&P 431, I've read many stories of leakage, but then there are a few that it does work for. Generally speaking, ResMed makes really good masks......although some have had issues with the Quattro and Ultra Mirage FF......but others love them.
Nasal masks are a whole other ballgame (that I've never "played"). Some of it depends on a person's nostril size and shape (for pillow or prong type masks). The older/earlier Swift masks were notorious for being noisy. Some users have problems with them becoming dislodged during the night. Many new users who fear the thought of claustrophobia from full face masks when they start out, opt for nasal masks......and then have trouble with their mouths falling open during the night......another form of "leaking".

In any case, the two that were mentioned by the OP are two (that I can think of) that I've read the most leaking stories about.


Den

[montana]

I have tried a bunch too. As long as DME will let you try them ....try some others. I researched them and then TOLD dme what I wanted to try out.
I settled mostly on the Full LIfe mask https://www.cpap.com/productpage/respir ... dgear.html

Also some here have bragged about the Zzz. https://www.cpap.com/productpage/zzz-ma ... asics.html

You might also try mirage the liberty or the hybrid. Every face is different.

[DoriC]

It seems that your pressure is set wide open on auto from 6-20cms which may be causing problems. I'd take Den's suggestion about trying cpap mode at your titrated pressure or close to it or using it on auto at a narrower range using your titration pressure as a guide. There's nothing "comfortable" about the ComfortGelFF IMHO. My hubby has had success with the UltraMirageFF.

I forgot to add that since you have a new Dr you might want to discuss any pressure changes with him/her.

[cobra4x4]

Don't forget you won't feel instantly better, in fact you may feel worse for a few weeks while your body adjusts and while your body catches up on what is called sleep debt.

Very few people get instant success, I'm one of the lucky ones .... was given a swift II nasal pillow which has worked well once I chose the right size pillow and loosened the straps. I have since ordered a swift FX to compliment what worked from the get go.

If your a nose breather I would suggest trying nasal pillows as they are less obtrusive.

[kteague]

Been there, done that. Really. I even quit for a while. It's just my opinion, but I think the number of people who truly CAN'T use CPAP is much less than the number that quit. You haven't decribed any issues with the treatment itself, so you have every right to be hopeful that there is a resolution for you. Finding the right mask can be the most frustrating part of this, but I hope you don't give up. Glean tips on here and keep trying "just 1 more thing" until you find a comfortable mask or make a mask comfortable. Best wishes.
Kathy