60 nights of hell

[Nahelia]

I have been attempting to use my cpap since Feb. 15. Missed some days due to illness. It has been hell. Every night I'm adjusting the mask, trying to get rid of leaks or just trying to get comfortable. I have tried several masks (some nasal gel thing, Swift LT for her, Mirage Quattro), now using the Mirage LIberty. This mask leaks around my mouth as my jaw drops back when I sleep. No problems nasally. I proposed getting the hybrid full face since there is a chin strap and thought it might hold my chin up enough that the leaks might stop. The insurance company says no since this mask is so similar to the Liberty. I've tried a chin strap but it is nearly impossible to get everything in the right place.
I've about had it. I have had a few nights of success (3 hours) and it is possible my headaches may have decreased. Not sure yet. My question: Can anyone tell me if it is worth buying the hybrid out of pocket? does the chin strap help with leakage? My resp people are worthless and my insurance resp person does not return phone calls. I"m about ready to return the whole thing and go back to when I thought I was actually sleeping and rarely woke up (consciously).

[DreamDiver]

... Can anyone tell me if it is worth buying the hybrid out of pocket? does the chin strap help with leakage? My resp people are worthless and my insurance resp person does not return phone calls.

Nahelia,

Welcome.

Don't give up. Maybe someone here can help. I bought the hybrid, but not out of pocket. I like the mask, but it's not currently my go-to mask. Right now my favorite is the zzz full face. You'll need to use a strap from a different mask, because the strap that comes with it is garbage. However, when used with the papcap plus, this mask is virtually large-leak free for me. I also like it because it's more pliable than others. And, you can scratch your nose by pushing in on the mask. It's nearly all silicone. It's one of the least expensive full face masks, but add the cost of another strap (or a papcap plus) and you get something equivalent to what other masks cost.

That said, everyone's face is different. No two people fit the same mask style exactly. It really is a very personal journey. At some point, mask measurement will be standardized the same way lenses for glasses are. Until then, this is what we have.

Good luck. I know others will chime in soon too.

[Julie]

Hi, don't give up yet! One thing that I'll guess at is that you are sleeping on your back? If so, two things... one is that it's the worst position for more apneas to show up, and while they may have asked you to sleep that way in the study, it's because they wanted a baseline reading, but you otherwise should try hard not to do it (for the reason you mentioned, and because of creating more apneas). A lot of people here use all kinds of tricks from pillows to tennis balls to stay off their backs. The other thing would be that I'm not aware of any particular mask (maybe others are) that would help with your jaw problem, except to not sleep on your back, but while chin straps can help, they aren't as effective as FF masks or taping (have you tried that yet?). I doubt very much if anyone will tell you to get any particular mask as everyone's different, and what fits one face won't be good for another.

[elena88]

When I read your title, I thought I could have written it!

I do know how you feel, and I wanted to stop too, it just wasnt worth it..

these nice folks talked me through it.. DO NOT GIVE UP... when you are upset is not the time to make such an important decision.

If you have to, take a break one night, when you just cant take it anymore, thats much better than throwing in the towel.

My sleep doctor told me I would probably go thru trying at least a dozen masks before I found one I liked.. I was ready to quit at two, so
dont despair.. you will find the answers..

You only THOUGHT you were sleeping well, I thought that too..

Do not give up!

[Thomas F.]

I've tried a chin strap but it is nearly impossible to get everything in the right place.

What kind of chin strap do you use? In my experience the papcap is the strongest and best chin strap available. I am able to use it with the Liberty mask without too much adjusting. What size Liberty mask are you using. I have a small mask and it seals around my mouth ok but I do have to snug the lower straps a little.

Sleeping on the side is a better position to keep jaw from dropping. For me, however, I fight more mask leaks around the nose cushions on the Liberty when on my side. There are trade offs and it really is a matter of face dimensions and trying different masks or different sizes of the same mask until you get the right one for you.

[echo]

While the hybrid may be a better fit for you than the liberty (they are similar masks in the same way all nasal masks are similar masks ) , the hybrid's little chin rest is not the same as a chin strap. I'd say try to get the hybrid anyway, e.g. if you're not up to convince the insurance people try http://www.cpapauction.com .

You might want to try the pap-cap, it's a lot more comfortable than chinstrap and also helps hold everything in place: http://www.pur-sleep.com/content/?id=44

Don't give up! It's tough to find the right mask, but once you do, you will have the sweatest sleep ever....!

[Big Daddy RRT,RPSGT]

Resmed has a 30 day return policy for all it's mask if your home care company participates you could get a replacement. I don't think the hybrid is any better that the Liberty. I have the same problem with my jaw. I use a chin strap and then put on my Resmed Quattro full face mask. I also make a cloth liner for my mask (Similar to a Remzzzs) so i can tighten it without leaving marks on my face as I am on 17 cmH2O at least some of the time and this much pressure causes leaks. Good luck. Don't give up.

[Big Daddy RRT,RPSGT]

If you are having that much difficulty sleeping you may also be on the wrong pressure. I usually tell my patient's if you have been using your CPAP every night for a few weeks you should be making progress. Make a follow up with your sleep doctor. He might make a pressure change or order a two week Auto trial. After two weeks they download your data and determine your 95th percentile pressure. If you sleep better with auto this may be an indication you were on the wrong pressure. If they set your cpap to this new 95th pressure and you go back to sleeping poorly you may need your own auto cpap permanently. If auto doesn't work you may do better on BiPAP. In other words your mask might be bothersome because you can't get to sleep. I think many people find the mask annoying but eventually fall asleep and forget about it. Keep trying. Good sleep is there somewhere just keep trying. Good luck.

[Nahelia]

nk you for all of your replies.
I unfortunately cannot sleep on my side for very long due to neck issues! Which cause headaches and pain... I have also noticed I cannot turn to my side while using the mask; then the leaking is astounding. It appears I need to sleep on my back and not move at all for the mask not to leak. One problem after another. I am going to get the papcap though. That does seem to be a possible solution for some of my issues. Would that be strong enough to hold my mouth shut so I could go back to the Swift for her?

I have also noticed the part that presses on my upper lip stops my lips from being together, further aggravated of course by my jaw dropping back when I sleep. But is it true that since I must be breathing out of my mouth at some points, that I am still getting the benefits since the air is pressurized through my nose or mouth? When I used the swift for her, I tried taping my mouth but was quite good at blowing through the tape.

I also appreciated the "might need to try 12 masks" comment...at least I don't feel quite to bad about not being happy with any. Especially since the medical people don't seem concerned enough to be helpful.

My pressure is quite low really, I think 8, if I remember correctly so probably don't need a change there.

Thank you again for all your encouragement. I hope I can continue...

[ozij]

My leaks are much better controlled when the hose dangles from above.
Rested Gals LINKS to Hose hangers and methods of managing the air hose
viewtopic.php?t=10640

[kwikwater]

I hurt for those that have to go through so much to get the relief they need. I was one that everything worked perfectly from night one. I learned a lot about fitting by going to the mfg's websites. I was going about it all wrong usually. If a nasal mask was blowing in my eye, I'd tighten top straps, when I discovered the gap was due to overtight jaw straps... I too wonder about the pressure setting. Does it help or hinder to use a ramp function? keep trying. It's worth it!!!

[zimmy39]

I feel the same way.have had the same problems,have not tried that many masks thou.cant afford it.I used it faithfully for 2 weeks maybe a little longer and got progressively worse, i am a incentive sewer and cant stay awake even when doing other jobs.felt like I was in a clould. but haven't used it for 3 nights and am doing better.almost back to having just a couple sleepy episodes a day.