I just seem to get worse and worse HELP!

[macewa]

I have my pressure set at EPAP 11.5/IPAP 22. I use a total face mask and I really need to use that type of mask, but the leaks are waking me up all night and I end up now, taking the mask off.

The night of 3/8 AHI 12.32, OA 3.21, CA 6.92, Periodic 6.36 and leak at 95% was 99.47 Slept 5:55 hours
The night of 3/9 AHI 10.38, OA 4.23, CA 3.84, Periodic 6.36 and leak at 95% was 86.37 Slept 2:36 hours with mask

So last night I use adhesive tape since it was all I had here and taped the freaking maks onto my face (don't ask about taking the tape off this morning). I still had some leaks but everything went beserk: AHI 32.67, OA 20.79, CA 9.12, Periodic 2.94 and my leak at 95% was 52. I slept 4:42 hours. Need I say that I feel like a tank ran over me today? and on top of that, my vertigo is really bad today.

I am "sleeping" less and enjoying it less. I have yet to find a mask that doesn't leak. I start out great, but shortly after going to sleep the noise from the leaks now wake me up. Tonight I am going to use painters tape if I can find it. I am going to go try to take a nap in just a bit with the full face mask and see if I can get any sleep. But then I will wake up with a horrible nose ache.

Perhaps I have to have my minimum number back at 17 to see any results, but with leaks at current pressures, you know it's going to be worse if I go back up.

I've only been doing this since September 2011 but I cannot say I feel any better on a whole. If I were not on the Ritalin, I'd be doing much worse during the day.

This is from last night:



It says here I was asleep 4:42:49 but I think it really was more like 5 hours. ??

[Pugsy]

Perhaps I have to have my minimum number back at 17 to see any results, but with leaks at current pressures, you know it's going to be worse if I go back up.

How about taking the variable pressures out of the equation for just a bit....at least the large variations? Increase your EPAP but not to 17...maybe 14. Less variation in pressure may help reduce the leak. You are likely going to need it for the events anyway.

[macewa]

Thanks - I'll try that when I take my nap. It's so frustrating and a bit depressing to not be doing any better and then, because of the leaks, be getting even less sleep.

Perhaps I have to have my minimum number back at 17 to see any results, but with leaks at current pressures, you know it's going to be worse if I go back up.

How about taking the variable pressures out of the equation for just a bit....at least the large variations? Increase your EPAP but not to 17...maybe 14. Less variation in pressure may help reduce the leak. You are likely going to need it for the events anyway.

[BlackSpinner]

Thanks - I'll try that when I take my nap. It's so frustrating and a bit depressing to not be doing any better and then, because of the leaks, be getting even less sleep.

Instead of looking at it as "not doing any better" focus on that your body is not getting treated any worse. You are making headway. You are working at it. Give yourself credit for that. You are in a learning curve. You didn't stand up and run when you were one , you stumbled, you fell, you howled, and you tried again, and again, and again.....

[robysue]

macewa,

As BlackSpinner points out, you are still in a learning curve. And you need to focus on the positive: Give yourself a pat on the back for continuing to work on PAP in spite of all the difficulties.

As pugsy says, increasing the min EPAP to 14 should help some with the leaks. Since leaks are an issue, could you post a screen shot including the leak curve and the flow data? That would be useful.

Have you been able to pinpoint where the total face mask is leaking? If we knew where the leaks are happening, that might help too. Also---the total face mask you are using is not a very common one, but there ARE users here who use and love that mask and have been able to the leaks under control. In order to get their attention you might want to change the title of the thread to something like Help with total face mask---bad leaks are waking me up

Finally I think some folks have found using silicon "putty" or squishable silicon earplugs useful for plugging leaks. You can usually find them at a store like Walmart. One common brand is Macks.

[macewa]

I upped my EPAP pressure from 11.5 to 14 and wore the full face mask last night. Definitely showed results, but I did wake up briefly several times because my nose was hurting. The Total face mask leaked everywhere. I will post re the mask and post some more charts when I get back. I have to go do an MRA this morning. Definitely not looking forward to it.

It is very difficult to be optimistic when instead of moving forward, even if by just a little bit, I seem to be going in the wrong direction. I've spent my whole life picking my self up, dusting off and contiuing with a forward motion and frankly, I'm very tired (in more ways than one). And I finally allow myself to say that. I appreciate the post and apologize for taking my frustrations out on you. Not my intent as you have been kind enough to post and try to help me.

When I get back I will post about my total face mask. The DME told me it had a problem with leaks and the manufactuter was working on that and a new model would be coming out shortly that had the fix.

EPAP: 14.0 IPAP: 22.0 cmH2O
PS: 8.0
Date Sleep Wake Hours
3/12/2012 00:55 07:25 06:30:01
AHIApnea / Hypopnea Index 5.54
HypopneaHypopnea 0.00
ObstructiveObstructive Apnea 4.77
Clear AirwayClear Airway Apnea 0.77
RERAResp. Effort Related Arousal 0.00
Flow LimitFlow Limitation 0.77
VSnoreVibratory Snore 0.00
PB/CSRPeriodic Breathing 0.00%

macewa,

As BlackSpinner points out, you are still in a learning curve. And you need to focus on the positive: Give yourself a pat on the back for continuing to work on PAP in spite of all the difficulties.

As pugsy says, increasing the min EPAP to 14 should help some with the leaks. Since leaks are an issue, could you post a screen shot including the leak curve and the flow data? That would be useful.

Have you been able to pinpoint where the total face mask is leaking? If we knew where the leaks are happening, that might help too. Also---the total face mask you are using is not a very common one, but there ARE users here who use and love that mask and have been able to the leaks under control. In order to get their attention you might want to change the title of the thread to something like Help with total face mask---bad leaks are waking me up

Finally I think some folks have found using silicon "putty" or squishable silicon earplugs useful for plugging leaks. You can usually find them at a store like Walmart. One common brand is Macks.

[Pugsy]

AHIApnea / Hypopnea Index 5.54

Huge improvement with the increase in EPAP.. if/when you adjust it again..go up in 0.5 cm increments. You are very close to having that dialed in. It may even trend downward on its own a bit.

I wish I had some better ideas to help with the mask problems. I just have never really used anything other than the nasal pillows. So I am not much help in that regard.
Is there any way at all that you could use a nasal pillow mask? Even a little mouth breathing would be preferable to a decimated nose or waking a gazillion times with leaks.

[n0hardmask]

Macewa, is there any chance you're trying too hard and overtightening the mask? Hopefully, Total Face users will chime in. Also, you might try using a chin strap or something to help stabilize the headgear.. looks to me like it could have a tendency to shift sideways at night?
Lots of folks use Padacheeks or other liners; but take heart.. as Pugsy noted, the apneas are much lower last night!! Keep up the good work; good luck, too.

[macewa]

Yes, last night was good as far as the AHI goes. I hope it stays that way. I wonder what difference the other mask made? The problem is that the last times I changed the numbers I had a couple of decent nights aned they it blew crazy. I am thinking I have to have these higher numbers but the auto makes it doable. When it was on straight, I just couldn't deal with it at all.

Back from the MRA and I had both done. Person who set up appt said each would be a least an hour. But when I got there, one waw 15 min. and one was 10 min. That was duable. Far cry from 80-90 min. for the two. So, I did both and now am done. Tomorrow I will go pick up the reports from them.

AHIApnea / Hypopnea Index 5.54

Huge improvement with the increase in EPAP.. if/when you adjust it again..go up in 0.5 cm increments. You are very close to having that dialed in. It may even trend downward on its own a bit.


I start off going to sleep with everything feeling comfortable, but I wake up to the sounds of the leaks (they are that bad) and tighten until they stop. To end up wearing a chin strap with the mask -- no can do. I just cannot deal with that and the straps I already have on me mask are breaking my hair, plus summer coming, it will be way toooo hot to have more stappings and stuff on me. My hair is thinning and I don't need borken hair I still enjoy looking nice when I go out and I do not do short hair. I have to find a mask that will work. There is a strap over the top that I can fix. But maybe I need some straps in other places on the mask. My leaks in the ful face mask weren't bad last night. But I don't want to use that mask, my nose is still bothering me and its hours later.

Re: total face mask---bad leaks
by n0hardmask on Mon Mar 12, 2012 10:22 am

Macewa, is there any chance you're trying too hard and overtightening the mask? Hopefully, Total Face users will chime in. Also, you might try using a chin strap or something to help stabilize the headgear.. looks to me like it could have a tendency to shift sideways at night?
Lots of folks use Padacheeks or other liners; but take heart.. as Pugsy noted, the apneas are much lower last night!! Keep up the good work; good luck, too.

I wish I had some better ideas to help with the mask problems. I just have never really used anything other than the nasal pillows. So I am not much help in that regard.
Is there any way at all that you could use a nasal pillow mask? Even a little mouth breathing would be preferable to a decimated nose or waking a gazillion times with leaks.

[Pugsy]

I wonder what difference the other mask made?

Doubt the huge difference was the mask....I am betting on the increase in EPAP for the reduction in AHI. You just need more EPAP than you had before. Mask may have been a small factor but I imagine the EPAP holds the most responsibility.

[sandman19]

I'm glad you are on the forum. I seem to be one of the few people that likes the Mirage Quattro. It took about 40 minutes to find the "sweet spot" where it floats on my face and doesn't leak. It needs gentle finessing. Tighening too much causes leaks to worsen. My only problem is when my ASV pressure changes from 6-8 to 20 or more in just a cycle or two (for my centrals). Than it leaks. I've just ordered a pad-a-cheec liner. My DME, which is actually very good, stressed the correct size of FFM. I am 6' 200 pound guy, but I take a small Mirage. I wanted to use the Quattro FX but the bridge of my nose is too small. I also used small nasal pillows until the mouth leak got too bad. So pay attention to the correct size of the mask. Good luck! Sandman19

[Mary Z]

I have the FitLife Total Face Mask- the one that comes in two sizes. Not the Total Face Mask that comes in one size fits most.
With the FitLife I need the large, but the small headgear. Or I wear a kufi cap under the straps and it takes up the slack nicely with the large headgear. I like that way better. When I first started using this mask I had trouble with leaks because the headgear was too large.
I did the Macks silicone ear plug seal and that worked well. Then I hit on the idea of the hat just on the crown of my head to take up the slack and now have 0 leaks 90% of nights. This mask does tend to pull my lower jaw backwards, but it's not uncomfortable. I keep the straps fairly loose and just make sure the mask contacts my face all the way around. I love this mask.

If you have the other one size Total Face Mask- well I've heard it works for some people, but haven't heard anything really good about that mask.

I also think you're making progress and need to start a new thread or change the name of this one to reflect your great progress. The "I just seem to get worse and worse. HELP!" subject just doesn't reflect your advancment and can do attitude and at this point is misleading (and becoming tiring).

Good luck, at this point it seems that if you can get the mask issues under control you will be doing very well.

[macewa]

I haven't tried nasal pillows and have no idea how they work. I am a mouth breather and the odds of me wearing a chin strap or pretty nil. I am already dreading the though of summer coming, knowing already how miserable I will be.

By the way, I went and had both MRAs done. Whoever talked with me initially let me think it would be over 80 minutes in that tube. 1st one was about 15 min if that and same for second one. That I can handle. I got results of all the blood tests done and one has come back that really bothers me and I am trying to get an appointment to go in and see my med person. They could not run some tests because my blood platelets were too large. Reading up on that can be pretty scary.

AHIApnea / Hypopnea Index 5.54

Huge improvement with the increase in EPAP.. if/when you adjust it again..go up in 0.5 cm increments. You are very close to having that dialed in. It may even trend downward on its own a bit.

I wish I had some better ideas to help with the mask problems. I just have never really used anything other than the nasal pillows. So I am not much help in that regard.
Is there any way at all that you could use a nasal pillow mask? Even a little mouth breathing would be preferable to a decimated nose or waking a gazillion times with leaks.

[Pugsy]

I have a very, very gently used Swift LT for Her that I could send you to try so you wouldn't be out any money to try a nasal pillow mask.
Unless you have some major nasal congestion issues or seriously deviated septum, you might do better than you think. I thought I was a mouth breather too. Come to find out I was gasping all night for air. Once I had been on therapy a couple of months no more (or very, very rare) mouth breathing.

Just an option I thought I would toss out. I also have a more than gently used Swift FX for Her but I have new nasal pillows for it that you could try.

Another thought...Have you tried the Hybrid mask? It uses the nasal pillows but also has the mouth covered.

[macewa]

I have a very, very gently used Swift LT for Her that I could send you to try so you wouldn't be out any money to try a nasal pillow mask.
Unless you have some major nasal congestion issues or seriously deviated septum, you might do better than you think. I thought I was a mouth breather too. Come to find out I was gasping all night for air. Once I had been on therapy a couple of months no more (or very, very rare) mouth breathing.

Just an option I thought I would toss out. I also have a more than gently used Swift FX for Her but I have new nasal pillows for it that you could try.

Another thought...Have you tried the Hybrid mask? It uses the nasal pillows but also has the mouth covered.

I will PM you on this.