*UPDATE* 1.5 years on ASV with NO RELIEF

[robysue]

Coolside of the pillow,

First, since you are updating a two-year old thread, you might want to start a new thread with a subject line like: 1.5 years on ASV and still no relief

That way you will attract the attention of the folks who use these sophisticated and rather uncommon machines.

You seem to be saying that you are still unable to sleep with mask on your nose due to the extremely high pressure you are using. And the wife is also unable to sleep because she's listening to you stop breathing all night long. (Which is no surprise since your untreated AHI is in the 130s) And you've got a 9-month-old baby. There's lots of reasons here---besides your own health---that you need to make this work.

You end your post by writing:

I am at a loss now. No clue what to do.

So let's try to move out of "depressed about the whole thing" mode and into "problem solving mode".

Let's start problem solving by having you do four basic, but important things:

Task 1: Document just how bad your problem with "compliance" actually is for both yourself and us
These questions may help you with that task:

* Exactly which masks have you tried? How long did you try each mask before giving up on it? How long has it been since you last replaced your mask's cushion?

* What is the exact name of the machine you are attempting to use? What are the exact settings on your machine? Are you still using the prescribed pressure settings? Or have you tweaked them on your own?

* What is the longest period of time you've managed to sleep with the mask on your nose in ONE night?

* What is the longest period of time that you've actually used or tried to use the machine every night when you first go to bed?

* What is the longest period of time that you've not even bothered trying to wear the mask when you first go to bed at night?

* Right now, how often do you put the mask on at bedtime---regardless of what happens later? Every night? Once or twice a week? Almost never?


Task 2: Identify and document the particular issues you have with therapy.
Yes, I know: Leaks are your big bugaboo right now and "nothing works". But in order to get help, you've got to do some very real and difficult analysis of what's bugging you. Think about these questions:

* Just how bad are the leaks? Do they keep you from getting to sleep? Or do they wake you up from sleep? Or do they disturb the wife?

* What is the location of the leaks? Near the top of the mask? Into your eyes? Around the edges of the nose? Out of your mouth if you're using a nasal mask? Around the bottom of your chin? Does the location of the leaks change from mask to mask? Does the location of the leaks change from night to night---even if you use the same mask?

* Are you "afraid" to move around normally in your bed because every time you do so, a leak starts? Does NOT MOVING cause you to get uncomfortable in your bed when you are trying to get to sleep?

* Any other problems with therapy? In other words, if the leaks can be conquered are there other issues waiting in the wings that will also need to be dealt with?


Task 3: Identify what things you have tried and how badly they failed
There's a lot to fixing leaks beyond merely switching masks, but that's the starting point obviously. Consider these questions:

* You say you've "tried different masks, pillows, etc. and nothing works." Exactly which masks have you tried? Which mask seems most comfortable to you and why? Do all the masks leak in the same place? Are some masks more uncomfortable that others?

* Have you tried loosening the headgear as well as tightening it? Have you properly maintained the equipment? Replaced the cushions on time? Replaced the headgear on time? Properly reassembled the mask each time you've taken it apart for cleaning?

* A clean, dry, and smooth face often helps with the seal of nasal masks and full face masks. Have you tried changing your facial care routine? It may be that washing your face several hours before bedtime (so that it can dry) will help. If you've got a heavy beard or mustache, you may need to shave a couple of hours before bedtime. You need to make sure the mask cushion is also dry when you put it on your face. Clean it in the morning so it has all day to dry. And consider what you use to wash your face. If it leaves a greasy/oily residue or if it contains a moisturizer, you may need to change to something different.

* Have you tried mask liners? Did they help at all? Why or why not?

* Have you tried an anti-leak strap from Padacheek? They're designed primarily for full face masks, but if that's what you're having trouble using, then these things are worth a try.

* Some mask leaks are caused by the hose pulling on the mask. Have you tried a hose management system? Have you tried running the hose under the covers and "hugging" it?

* If the problem is caused by the muscles in your jaw relaxing and the mask getting loose at the bottom or if the problem is mouth breathing, have you considered a chin strap? Or mouth taping?

* Since you believe the leaks are caused by the need to use extremely high pressure, have you considered lowering the pressure just a smidgeon? Yes, it may compromise your therapy, but if you can conquer the leaks with a pressure that is close to your prescribed level, then "compromised" therapy with an AHI in the teens or even twenties may be a much better bargain than "no therapy" with an AHI in the 130s. Once you've succeeded in learning to sleep with the mask, then you can work on increasing the pressure back up to where it's needed for fully effective therapy.

* Have you reported the serious leak problems to the DME and your sleep doctor---possibly multiple times? What suggestions have they made? Have you followed through with those suggestions?


Task 4: Set some specific goals for therapy
These goals need to be something that you can measure. And they need to be realistic. And you need some short-term and middle-term goals as well as long term ones.

You've already got the long term goal in mind when you write: "Now we have our first child. He is 9 months and I really want to get this under control for him. " So long term, your goal for therapy is for it to help you to remain healthy and alive long enough to see that precious son grow up, get married, and have kids of his own.

But in order to get there, you need some short term and middle term goals.

Some reasonable short term goals might be:
* Commit to wearing the mask at the start of the night every single night for the next two months. Some of making this therapy work is giving it enough time. And to develop the capacity to keep getting right back on the horse every single night---even when it throws you off in the middle of the night. At the end of those two months reward yourself and your family with some kind of a reward. The reward cannot be: Sleep without the mask. Rather, reward the whole family by doing something you like to do, but usually don't have the time to do. A nice dinner out with the wife perhaps.

* Set up an appointment with your sleep doctor to talk about just how difficult things have been and how you want to make a real go of this. If you don't have a sleep doc, ask your PCP for a referral to a sleep specialist. Be sure to discuss how difficult you find it to sleep with the mask on your face as well as talking about the leak issues.

* Work out a strategy for dealing with the "What do I do if I wake up with leaks and can't get back to sleep" problem. You may need professional help from the sleep doc to do this. Or you may want to find a good CBT counselor---most likely a psychologist to help you with this issue. And once you have a strategy worked out, you need to start implementing this strategy. My own advice is that "Take the mask off and return to sleep without it" has no business being part of this strategy. I'd suggest that you give yourself a reasonable amount of time to get the leak fixed and get back to sleep. Maybe 20-30 minutes at most. If you're still not asleep because you're fighting the leaks at the end of 30 minutes, it's time to get out of bed, go into a different room, do something calming and soothing and sleep inducing. And return to bed when you are calm enough to start over. And hitting the ramp to get the pressure back down low enough to get back to sleep in the middle of the night is OK if that helps to (temporarily) fix the leaks.


Reasonable middle term goals might include:
* Working with the sleep doc's office or possibly a CBT counselor (probably a psychologist) on teaching your body to get to sleep and stay asleep with all the sensory stimulus stuff from the mask. And learning to not spend extended time fighting the mask in the middle of the night. In other words, implementing the strategies you decide to use for what to do when you wake up to leaks in the middle of the night.

* Getting the leaks genuinely under control. It may take trying a dozen more masks before you find the perfect one. It may take wearing a chin strap. It may take rethinking your hose management. It may take working more closely with your DME or your sleep doc. It may take all of these things. But at the beginning, keep it simple: Change one thing at a time, and document whether it helped, made things worse, or didn't make much of a difference. If a change makes things worse, go back to the previous set up. If it helped or didn't seem to do much, then make one more additional change.

* Continuing to work on your attitude. You already know you need to do this. But you need to get to a point where PAP is something you choose to do for yourself to take care of your apnea instead of feeling that PAP is something that is done to you by the doc and the DME. And you'll need to continually remind yourself that you can either choose to make this work (and do whatever it takes) or you can chose to say "nothing works" and give up. And until you get to the point where you no longer feel as though "nothing works", you'll need to monitor your own attitude towards therapy.

* Tracking your total sleep time with the mask. For now, it's apt to be depressingly low. But once you start occasionally managing to get 4 or 5 hours of sleep with the mask, you might then want to start tracking the total sleep you manage to get. And how you feel in the morning. And how you feel during the day.

[king_alvaro]

I am also new here. So I welcome you. I always tried to help people, even though I just have little knowledge of cpap. Do the same to help other and learn as much as you can.

[neverbetter]

...what robysue said!

[VVV]

Fact is because my apnea is so severe I am not a surgery candidate due to the anesthesia.

Who told you this nonsense. Anesthesiologists have ways to keep the worst of cases breathing during surgery and recovery.

I have been to the dentist and doctor this week and they both commented on how large my tonsils were. They are huge.

If this is true you need to see an ENT who has considerable experience with sleep apnea patients. It is possible that removal of enlarged tonsils could cure sleep apnea in the best case. In a less than ideal case it might lower the required CPAP pressure and make CPAP therapy much easier.

Get an evaluation from a good ENT.

[junior49]

So is your problem you can't find the right mask? If so, just keep trying new ones. I don't know how many are out there, but I'm guessing at least 20-30 different kinds of masks. I was getting depressed also, couldn't get my mask to work and I was past the initial 30 days. I brought it up to my sleep doctor and he sent a note to the DME to let me try some more new masks.

Man, I'm glad he did that. The next mask I tried worked like a charm, the mirage fx. Also, I learned to nose breathe, which I believe helped a lot also. I didn't have to limit myself to full face masks. Try some more masks, you never know what will work. When I started, I never thought I'd be able to use a nasal mask and it's been great.

[motherall]

I have been diagnosed with severe apnea with well over 100 episodes a night. Time to start reading. Just wanting to say hi!

Love the screen name...welcome.

[Coolsideofthepillow]

WOW really appreciate all of this help. Let me see if I can answer a bit.

* Exactly which masks have you tried? How long did you try each mask before giving up on it? How long has it been since you last replaced your mask's cushion?
Ultra MIrage, Comfort Full 2, and Comfort Gel. I havent used them long enough to replace teh cushions to be honest.
* What is the exact name of the machine you are attempting to use? What are the exact settings on your machine? Are you still using the prescribed pressure settings? Or have you tweaked them on your own?
Respironics Bipap Auto SV w/ humidifer, I believe the settings are 30/10, I havent tweaked.
* What is the longest period of time you've managed to sleep with the mask on your nose in ONE night?
1 hour
* What is the longest period of time that you've actually used or tried to use the machine every night when you first go to bed?
Maybe a week
* What is the longest period of time that you've not even bothered trying to wear the mask when you first go to bed at night?
good gravy. Do I need to answer this one.
* Right now, how often do you put the mask on at bedtime---regardless of what happens later? Every night? Once or twice a week? Almost never?
Almost never

Task 2: Identify and document the particular issues you have with therapy.
Yes, I know: Leaks are your big bugaboo right now and "nothing works". But in order to get help, you've got to do some very real and difficult analysis of what's bugging you. Think about these questions:

* Just how bad are the leaks? Do they keep you from getting to sleep? Or do they wake you up from sleep? Or do they disturb the wife?
Wake me from sleep due to ramping.
* What is the location of the leaks? Near the top of the mask? Into your eyes? Around the edges of the nose? Out of your mouth if you're using a nasal mask? Around the bottom of your chin? Does the location of the leaks change from mask to mask? Does the location of the leaks change from night to night---even if you use the same mask?
Eyes and nose, full face and yes to night to night same mask and different masks.
* Are you "afraid" to move around normally in your bed because every time you do so, a leak starts? Does NOT MOVING cause you to get uncomfortable in your bed when you are trying to get to sleep?
Yes and Yes
* Any other problems with therapy? In other words, if the leaks can be conquered are there other issues waiting in the wings that will also need to be dealt with?
I dont think so. The issue is I always end up flopping on my side and causing leaks. I have a cutout pillow also.

Task 3: Identify what things you have tried and how badly they failed
There's a lot to fixing leaks beyond merely switching masks, but that's the starting point obviously. Consider these questions:

* You say you've "tried different masks, pillows, etc. and nothing works." Exactly which masks have you tried? Which mask seems most comfortable to you and why? Do all the masks leak in the same place? Are some masks more uncomfortable that others?
need to think this one over.
* Have you tried loosening the headgear as well as tightening it? Have you properly maintained the equipment? Replaced the cushions on time? Replaced the headgear on time? Properly reassembled the mask each time you've taken it apart for cleaning?
I honestly havent worm each mask long enough to warrant replacing.
* A clean, dry, and smooth face often helps with the seal of nasal masks and full face masks. Have you tried changing your facial care routine? It may be that washing your face several hours before bedtime (so that it can dry) will help. If you've got a heavy beard or mustache, you may need to shave a couple of hours before bedtime. You need to make sure the mask cushion is also dry when you put it on your face. Clean it in the morning so it has all day to dry. And consider what you use to wash your face. If it leaves a greasy/oily residue or if it contains a moisturizer, you may need to change to something different.

* Have you tried mask liners? Did they help at all? Why or why not?
no I have not tried these
* Have you tried an anti-leak strap from Padacheek? They're designed primarily for full face masks, but if that's what you're having trouble using, then these things are worth a try.
no I have not tried these
* Some mask leaks are caused by the hose pulling on the mask. Have you tried a hose management system? Have you tried running the hose under the covers and "hugging" it?
no I have not tried these
* If the problem is caused by the muscles in your jaw relaxing and the mask getting loose at the bottom or if the problem is mouth breathing, have you considered a chin strap? Or mouth taping?
hmmmm, full face?
* Since you believe the leaks are caused by the need to use extremely high pressure, have you considered lowering the pressure just a smidgeon? Yes, it may compromise your therapy, but if you can conquer the leaks with a pressure that is close to your prescribed level, then "compromised" therapy with an AHI in the teens or even twenties may be a much better bargain than "no therapy" with an AHI in the 130s. Once you've succeeded in learning to sleep with the mask, then you can work on increasing the pressure back up to where it's needed for fully effective therapy.
My pressure is set for the max the machine can take per the scrip, any lower apparently causes centrals.
* Have you reported the serious leak problems to the DME and your sleep doctor---possibly multiple times? What suggestions have they made? Have you followed through with those suggestions?
In the past. New mask and cutout pillow.

Task 4: Set some specific goals for therapy
These goals need to be something that you can measure. And they need to be realistic. And you need some short-term and middle-term goals as well as long term ones.

You've already got the long term goal in mind when you write: "Now we have our first child. He is 9 months and I really want to get this under control for him. " So long term, your goal for therapy is for it to help you to remain healthy and alive long enough to see that precious son grow up, get married, and have kids of his own.

But in order to get there, you need some short term and middle term goals.

Some reasonable short term goals might be:
* Commit to wearing the mask at the start of the night every single night for the next two months. Some of making this therapy work is giving it enough time. And to develop the capacity to keep getting right back on the horse every single night---even when it throws you off in the middle of the night. At the end of those two months reward yourself and your family with some kind of a reward. The reward cannot be: Sleep without the mask. Rather, reward the whole family by doing something you like to do, but usually don't have the time to do. A nice dinner out with the wife perhaps.

* Set up an appointment with your sleep doctor to talk about just how difficult things have been and how you want to make a real go of this. If you don't have a sleep doc, ask your PCP for a referral to a sleep specialist. Be sure to discuss how difficult you find it to sleep with the mask on your face as well as talking about the leak issues.

* Work out a strategy for dealing with the "What do I do if I wake up with leaks and can't get back to sleep" problem. You may need professional help from the sleep doc to do this. Or you may want to find a good CBT counselor---most likely a psychologist to help you with this issue. And once you have a strategy worked out, you need to start implementing this strategy. My own advice is that "Take the mask off and return to sleep without it" has no business being part of this strategy. I'd suggest that you give yourself a reasonable amount of time to get the leak fixed and get back to sleep. Maybe 20-30 minutes at most. If you're still not asleep because you're fighting the leaks at the end of 30 minutes, it's time to get out of bed, go into a different room, do something calming and soothing and sleep inducing. And return to bed when you are calm enough to start over. And hitting the ramp to get the pressure back down low enough to get back to sleep in the middle of the night is OK if that helps to (temporarily) fix the leaks.


Reasonable middle term goals might include:
* Working with the sleep doc's office or possibly a CBT counselor (probably a psychologist) on teaching your body to get to sleep and stay asleep with all the sensory stimulus stuff from the mask. And learning to not spend extended time fighting the mask in the middle of the night. In other words, implementing the strategies you decide to use for what to do when you wake up to leaks in the middle of the night.

* Getting the leaks genuinely under control. It may take trying a dozen more masks before you find the perfect one. It may take wearing a chin strap. It may take rethinking your hose management. It may take working more closely with your DME or your sleep doc. It may take all of these things. But at the beginning, keep it simple: Change one thing at a time, and document whether it helped, made things worse, or didn't make much of a difference. If a change makes things worse, go back to the previous set up. If it helped or didn't seem to do much, then make one more additional change.

* Continuing to work on your attitude. You already know you need to do this. But you need to get to a point where PAP is something you choose to do for yourself to take care of your apnea instead of feeling that PAP is something that is done to you by the doc and the DME. And you'll need to continually remind yourself that you can either choose to make this work (and do whatever it takes) or you can chose to say "nothing works" and give up. And until you get to the point where you no longer feel as though "nothing works", you'll need to monitor your own attitude towards therapy.

* Tracking your total sleep time with the mask. For now, it's apt to be depressingly low. But once you start occasionally managing to get 4 or 5 hours of sleep with the mask, you might then want to start tracking the total sleep you manage to get. And how you feel in the morning. And how you feel during the day.[/quote]

[Coolsideofthepillow]

Fact is because my apnea is so severe I am not a surgery candidate due to the anesthesia.

Who told you this nonsense. Anesthesiologists have ways to keep the worst of cases breathing during surgery and recovery.

I have been to the dentist and doctor this week and they both commented on how large my tonsils were. They are huge.

If this is true you need to see an ENT who has considerable experience with sleep apnea patients. It is possible that removal of enlarged tonsils could cure sleep apnea in the best case. In a less than ideal case it might lower the required CPAP pressure and make CPAP therapy much easier.

Get an evaluation from a good ENT.

The Doctor or maybe he was a nurse practitioner.

[JohnBFisher]

I fear I've run out of energy to give your post the time it deserves .. today. I will get back to this tomorrow. RobySue as usual did an excellent job of capturing some of the ideas. Boy howdy! Do I understand how you feel !! I will share some ideas tomorrow. The good news is that you will find a huge number of folks that use an ASV unit. There are some hints and tricks that we can offer. So, don't despair. We should be able to pool our noggins and come up with some ideas to help.

[Coolsideofthepillow]

I really appreciate everyone's efforts!

[robysue]

Coolsideofthepillow,

In response to one of my questions you wrote: "My pressure is set for the max the machine can take per the scrip, any lower apparently causes centrals." This is somewhat puzzling and I think I may be missing something important. So can you answer some additional questions about your official diagnosis?

Basic Question #1 : Is your official diagnosis Obstructive Sleep Apnea, Complex Sleep Apnea, or Central Sleep Apnea?

Basic Question #2: Do you still have a copy of your diagnostic sleep study? If so, what was the OAI? What was the HI? And what was the CAI?

The fact that you've brought up central apneas leads me to believe that you've probably got Complex Sleep Apnea (CompSA) or maybe a combo of Central Sleep Apnea (CSA) and Obstructive Sleep Apnea (OSA) instead of just plain old severe OSA.

Complex Sleep Apnea. Central apneas can be induced in a patient with obstructive sleep apnea when they start CPAP/BiPAP therapy---usually when the pressure gets too high. The patients typically then receive a revised diagnosis of Complex Sleep Apnea. And the first course of response is usually to reduce the pressure a bit in hopes that the CAs will go away while the OAs continue to be decently controlled. In some patients, the CAs continue regardless of the pressure reduction OR the number of OAs becomes too high when the pressure is sufficiently low. In other words, the goal in treatment is to find a "sweet spot" in the CPAP/BiPAP pressure that minimizes the total AHI even though neither the OAI nor the CAI are minimized. In other words, they look for a pressure that allows a few too many OAs through in exchange for not triggering an excessive number of CAs. When a decent "sweet spot" for CPAP/BiPAP pressures cannot be found, the CompSA patient is often moved to a BiPAP AutoSV (ASV) machine such as yours. The machine is usually set to something called ST mode. In ST mode there are two IPAP settings: IPAP min and IPAP max. In ASV or ST mode, the machine tracks your respiration rate and when you are breathing more or less normally, the IPAP pressure is pretty much at IPAP min. But in ASV or ST mode, if you are not breathing for a sufficiently long time, the machine attempts to trigger you to inhale by cranking the IPAP up to IPAP max and cycles between IPAP max and EPAP at a "back up" respiration rate. In other words, in ASV or ST mode the machine will act as a noninvasive ventilator.

Central Sleep Apnea. This is diagnosed if your original, diagnostic sleep study shows that most of your events are central apneas instead of obstructive ones. It's not that common, but some folks do have it. Usually CSA does not respond that well to straight CPAP/APAP since the problem is not caused by the airway collapsing. The ASV machines are designed to treat CSA because they can be set up as non-invasive ventilators. Again, the typical set up will involve setting an EPAP, a min IPAP, a max IPAP, and a some kind of a back-up respiration rate. When the patient is not breathing on his/her own, the machine cranks the IPAP up to IPAP max and cycles between IPAP max and EPAP at the "back up" respiration rate. The sudden increase in IPAP is supposed to "trigger" breathing by the patient and keep the gas exchange in the lungs going.

It's important for us to understand why you were put on the ASV in order for us to help you.

* Exactly which masks have you tried? How long did you try each mask before giving up on it? How long has it been since you last replaced your mask's cushion?
Ultra MIrage, Comfort Full 2, and Comfort Gel. I havent used them long enough to replace teh cushions to be honest.

Two FFM and one nasal mask. There are lots more FFM out there for you to try. Are you a mouth breather? Do you breathe through your mouth or nose during the daytime? If not, then there are lots more nasal masks for you to try.

* What is the exact name of the machine you are attempting to use? What are the exact settings on your machine? Are you still using the prescribed pressure settings? Or have you tweaked them on your own?
Respironics Bipap Auto SV w/ humidifer, I believe the settings are 30/10, I havent tweaked.

That's a very unusual prescription if you're using this machine in straight BiPAP mode. Do you know if you're using it in straight BiPAP mode? Or are you using it in BiPAP with AutoSV mode? Do you know whether ASV-mode is activated? In other words, has a back-up respiration rate been set? If so, then it's important to distinguish between your IPAP min and your IPAP max settings.

* What is the longest period of time you've managed to sleep with the mask on your nose in ONE night?
1 hour
* What is the longest period of time that you've actually used or tried to use the machine every night when you first go to bed?
Maybe a week
* What is the longest period of time that you've not even bothered trying to wear the mask when you first go to bed at night?
good gravy. Do I need to answer this one.
* Right now, how often do you put the mask on at bedtime---regardless of what happens later? Every night? Once or twice a week? Almost never?
Almost never

OK, we need to think of you as a real newbie: You've never really gotten anywhere close to compliance and you're starting over right at Square One. That's very useful for us to know.

* Just how bad are the leaks? Do they keep you from getting to sleep? Or do they wake you up from sleep? Or do they disturb the wife?
Wake me from sleep due to ramping.

What pressure(s) does your ramp start at? How long does the ramp period last?

* What is the location of the leaks? Near the top of the mask? Into your eyes? Around the edges of the nose? Out of your mouth if you're using a nasal mask? Around the bottom of your chin? Does the location of the leaks change from mask to mask? Does the location of the leaks change from night to night---even if you use the same mask?
Eyes and nose, full face and yes to night to night same mask and different masks.

If you are fitting the mask at your ramp pressure, that might be part of the problem. Is there a way to turn the ramp off and then back on?? That would allow you to fit the mask at your full pressure which would minimize the tendency for it to spring leaks when the ramp period is over.

* Are you "afraid" to move around normally in your bed because every time you do so, a leak starts? Does NOT MOVING cause you to get uncomfortable in your bed when you are trying to get to sleep?
Yes and Yes
* Any other problems with therapy? In other words, if the leaks can be conquered are there other issues waiting in the wings that will also need to be dealt with?
I dont think so. The issue is I always end up flopping on my side and causing leaks. I have a cutout pillow also.

Do you fit the mask when you are sitting up in bed? Or perhaps when you are lying on your back? If so, then an important thing to try is this: Fit your mask while lying down in the position you want to sleep in. Moreover, most masks should be fit while the machine is on and delivering pressure. So: If you've been putting the mask on while sitting up with the machine off, then turning the machine on and fiddling with it to stop the leaks and then lying down in bed, that might be a big part of your problems. Try this mask fitting procedure instead:

1) Turn the machine ON before you put the mask on your face.
2) Lie down in bed while holding the mask in your hand.
3) Once you are in your sleeping position (or as close to it as possible), then put the mask on and attempt to adjust the straps. Aim to keep the straps loose enough to be comfortable and tight enough to seal the mask. Overtightening the straps will tend to cause more leaks than it fixes.

Once you have the mask properly fitted and the hose properly managed, you should be able to turn over in bed without triggering massive leaks. But it does take practice to learn how to do this. So .....

I would recommend that you spend some time during the daytime practicing how to fit your mask once you are lying down in bed. Also do some daytime practice with learning how to roll over without triggering too many leaks. And also do some daytime practice with adjusting and readjusting the mask in response to leaks. The reason I'm suggesting that you practice these things in the daytime is this: These are muscle skills more than thinking skills once you solve the problem. But solving the problem requires the full engagement of the brain's thinking skills. And the kind of thinking needed to solve your leak problems is not particularly conducive to getting to sleep. So do the problem solving part of this when you're not trying to get to sleep in the first place. And, of course, the more you practice the muscle skills once you figure out what you need to do, the easier they are to do without thinking about them---once you are trying to get to sleep or back to sleep.

And another short-to-medium term crutch that you should be using is the ramp. Since you can deal with the leaks when the ramp is on, it's ok to hit the ramp button (or restart the machine) when you wake up in the middle of the night with hurricane force winds that you can't seem to tame.

* Have you tried loosening the headgear as well as tightening it? Have you properly maintained the equipment? Replaced the cushions on time? Replaced the headgear on time? Properly reassembled the mask each time you've taken it apart for cleaning?
I honestly havent worm each mask long enough to warrant replacing.

Check each mask carefully. The masks can get dried out and crack even if you don't use them. The cushions can deteriorate with age even if they're not being used every night. Starting with a brand new fresh mask may help.

* Have you tried mask liners? Did they help at all? Why or why not?
no I have not tried these
* Have you tried an anti-leak strap from Padacheek? They're designed primarily for full face masks, but if that's what you're having trouble using, then these things are worth a try.
no I have not tried these
* Some mask leaks are caused by the hose pulling on the mask. Have you tried a hose management system? Have you tried running the hose under the covers and "hugging" it?
no I have not tried these
* If the problem is caused by the muscles in your jaw relaxing and the mask getting loose at the bottom or if the problem is mouth breathing, have you considered a chin strap? Or mouth taping?
hmmmm, full face?

Start working your way through these things. One or more of them may be the key to solving your leak problems.

And yes, even when you are using a FFM, problems can occur when your jaw muscles go slack in the night and your mouth opens up. You don't lose therapy pressure from the open mouth, but the shape of your lower face changes as the muscles relax. And it can change enough for the mask to spring leaks down near the bottom.

* Since you believe the leaks are caused by the need to use extremely high pressure, have you considered lowering the pressure just a smidgeon? Yes, it may compromise your therapy, but if you can conquer the leaks with a pressure that is close to your prescribed level, then "compromised" therapy with an AHI in the teens or even twenties may be a much better bargain than "no therapy" with an AHI in the 130s. Once you've succeeded in learning to sleep with the mask, then you can work on increasing the pressure back up to where it's needed for fully effective therapy.
My pressure is set for the max the machine can take per the scrip, any lower apparently causes centrals.

Please keep in mind that when you are sleeping without the mask on your nose, your diagnostic study indicated that you had serious breathing problems 130 per hour. That's two apneas/hypopneas per minute. Each apnea/hypopnea lasts at least 10 seconds. So for every minute you are "asleep" with out the mask, there are at least 20 seconds where you are not breathing or not breathing well.

A slight reduction in that IPAP pressure setting may indeed allow some centrals to develop. But chances are that you'll still have far fewer total apneaic periods with a pressure that is not quite what you need than you have with no mask at all. And at your level of severity, some treatment is better than no treatment.

Think of a reduced IPAP pressure as "training wheels for PAP": You first need to learn how to sleep with the mask on your nose and right now, that incredibly high IPAP pressure is a major reason you can't sleep with the mask. Rather than going maskless forever, it's far better to start using the machine at a subtherapeutic pressure setting so you can learn to sleep with the mask and then gradually increase that pressure back up to your therapeutic settings over the course of several weeks or a few months.

[JohnBFisher]

Okay ... some sleep and now I'm better able to think through your post and provide some thoughts.

First of all, let's be certain that you know from where I come with my suggestions. I am NOT a medical professional. However, as you see from my signature, I've used xPAP therapy (CPAP, BiLevel and now ASV) for more than 20 years. I've fought many of the same battles as you. My experience can help you as well.

Second, be aware that .. like it or not .. you will almost certainly need to use a "breathe" machine every time you sleep for the rest of your life. Yes. It's a pain in the tail end. It's a nuisance to lug with you. TSA makes it easier than ever to take it with you when you fly, but it's still a REAL nuisance. If you tell them it's a CPAP device they will just check it for explosive residue .. and not think twice about it. Twenty years ago I often had to spend a lot of time and effort to help both the security folks and the airlines understand that it was medical equipment and it could come with me and did not count against my onboard allowances.

But the basic fact is that .. just like with glasses or contacts .. if you need it, then you need it. There are a LOT of folks that use them and travel with them. Just ask around. You would be surprised how many of your friends will admit to needing to use one.

Third, also you need to realize that there is a very small (though growing) number of folks that have ASV units. If you deal with a DME for supplies, they are pretty clueless about the needs of those units compared to CPAP and/or BiLevel devices. And that's because central sleep apneas are fairly rare in comparison. You will do better getting "how to" answers here than in any other single location. Here you will find (comparatively) a large number of users of ASV units.

Fourth, you should consider using a full face mask. I personally use the Resmed Mirage Quattro FX mask. But some people prefer the Resmed Mirage Quattro (without the FX) full face mask. However, there are other options:

https://www.cpap.com/cpap-masks/full-face-cpap-mask.php

Why a full face mask? Well, with just a nasal mask or nasal pillows when an ASV unit ramps up the pressure it will cause you to leak through your mouth. At those pressures there is NO way to maintain a seal. Even taping the mouth does not work. And if you have a mustache or beard, such as I do, then taping is NOT a good option.

Fifth, you can try the Pad A Cheek accessories. I use a hose cover not to keep it warm, but to keep the ridges from driving me nuts. I also use a mask liner to help quiet a leaking mask. With the wild swings in pressure, it can be difficult to keep a good seal on a mask. You can get mask liners from:

http://padacheeck.com/
http://remzzzs.com/
http://quietusliners.com/

Sixth, acclimating to an ASV machine takes time. The changes in pressure can disturb your sleep. It takes time to adjust to this. But you will adjust. Remember that your child now depends on you doing what you can to be there.

Seventh, it sounds as if you have built up a habit of poor sleep. You might need to work with your doctor to find a medication that helps you attain and stay asleep. For example, I use the generic of Remeron. It is an anti-depressant that has a known side effect of increasing sleepiness and improving the normal sleep architecture. But there are many other medications that may help you.

You might want to get the software to keep track of your therapy. This is no different than if you were diabetic. You would be expected to monitor and control your blood glucose levels to help improve your health. So should you monitor your sleep therapy.

There are just a few ideas. Hopefully this post and that of others will give you some ideas to help you get better sleep and adjust to using your ASV unit.

[Therapist]

Two doctors have stated his tonsils are huge. I am very surprised that this is being totally ignored in this thread.

[robysue]

Two doctors have stated his tonsils are huge. I am very surprised that this is being totally ignored in this thread.

It's not been totally ignored.

And one ENT has also said he's not a good candidate for surgery until AFTER the severe apnea is under control through the use of a PAP machine. And at least one poster has made the suggestion to keep looking for an ENT who is willing to do the surgery in spite of the severe, untreated apnea.

JohnBFisher and I are attempting to help coolsideofthepillow with the main question he's posted: What can he do to make this ASV machine more tolerable right now.

[JohnBFisher]

Two doctors have stated his tonsils are huge. I am very surprised that this is being totally ignored in this thread.

It's not been totally ignored. ...

Agreed! But as RobySue points out we need for focus on compliance and getting things under control - with our without the large tonsils this person will continue to have the central sleep apnea. So whether the tonsils are there or not, the OP must focus on making it work.

... And one ENT has also said he's not a good candidate for surgery until AFTER the severe apnea is under control through the use of a PAP machine. And at least one poster has made the suggestion to keep looking for an ENT who is willing to do the surgery in spite of the severe, untreated apnea. ...

Since the OP has central sleep apnea mixed into this, I would be surprised if ANY surgeon would be willing to jump in without some serious consideration. And if they are, I would get another opinion to be certain it is not a fly by night hack.

Surgery and central sleep apnea requires the surgeon and anesthesiologist be in complete agreement, since the medications provided for surgery will further depress the respiratory drive. The OP will need to be closely monitored and might need ventilation to assist. However, if the tonsils have just been removed that choice might lead (at least temporarily) to a tracheotomy.

Like I say, it is not something to lightly consider. And regardless of that outcome, the central sleep apnea remains.

... JohnBFisher and I are attempting to help coolsideofthepillow with the main question he's posted: What can he do to make this ASV machine more tolerable right now. ...

Exactly.