Back on APAP

[MaxINTJ]

After decent amount of time using a borrowed ASV and getting perfect numbers but not feeling any better, I have returned the ASV and am now using my CPAP/APAP machine.

Since the data from the ASV indicated a MED of 15 and a 95% of 20, I decided to try APAP at 10-15. The advantage of lower pressures was that I could do away with the horrible, horrible, Amara View and go back to my Dreamwear.

Well, at least now may data looks as crappy as I feel. According to SH I have multiple flags for every single category except periodic breathing. It looked like someone threw confetti on the SH screen.

2nd night post-ASV was last night, and I decided to try my machine in CPAP mode at 15 pressure to match the MED of 15.

Well, that didn't go so well, as I was getting mouth leaks (and shoves from my wife) and woke up feeling dead, dead tired.

I'm sure the data is awful like the first night - but at least it matches my physical feeling.

I think I feel more exhausted on the CPAP/APAP, so I'm guessing I'm maybe getting more desats with the lower pressure? I sleep longer with the Dreamwear and I don't take it off in the night, but if it's not effectively treating me...

So:

ASV+FFM = great numbers but crappy sleep

ASV+nasal mask = desert in my mouth, leak city, crappy sleep, and annoyed wife

APAP+nasal mask = crappy numbers and crappy sleep

CPAP+nasal mask = crappy numbers, crappy sleep, and annoyed wife

Looks like I have hit the end of the road, unless the sleep doctor and techs can come up with something that works.

[Julie]

We've all come up with a lot of things, but because you 'know' yourself so well, you won't even TRY them, what diff will it make if the doctors or techs come up with anything? How ridiculous you are - raining on the forum for months but only changing the few things you're so sure of. What a waste of time.

[MaxINTJ]

We've all come up with a lot of things, but because you 'know' yourself so well, you won't even TRY them, what diff will it make if the doctors or techs come up with anything? How ridiculous you are - raining on the forum for months but only changing the few things you're so sure of. What a waste of time.

Ummmm....

I have tried a whole lot of things. Different masks, different machines, different settings, CBT-I, etc', I'm not sure what all these "things" are that folks have come up with that I have not tried as part of the list above?

Add to that, a chin strap, tape, trying to sleep on my side, and taking benadryl to try to get into a deeper sleep.

[Grace~~~]

Hi Max ~~~

I've caught a lot of your posts and had ideas pop in my head but I am here seeking knowledge and not in a position to offer actual xpap help. So I never responded. Just read and watched.

Let me first say that I could not agree with you more about the dreamware mask. I only tried two masks but that was because there was not another top mounted hose mask to try. I understand the idea that *ALL* front, elephant, nose hoses are in the "NO" category - they are for *me*, as well. I won't go in to an insulting tirade but trust me I could even add a bit more 'spice?' to your contributions of the ridiculously simplistic design idea. It's as if they hadn't considered a human body or how that body sleeps. I want you to know that I understand COMPLETELY and I feel it would be torture to have anything hanging off my face in the center of my body. So for *me* I simply MUST make the dreamware work. Or until they invent another style that is top mounted.

I even have a nice thick bun of hair I put right on top of my head and it really steadies that hose connection. I try to make the nose pieces last as long as possible but I do know now that when I am having issues with the seal or excessive noise I have to break down and use a new nose piece.

What I like about the dreamware is the freedom. Nothing hanging in front of my face. I was able to create even more nakedness and freedom by going to a large frame which I wear tilted back and I was lucky enough that with the small nose piece it sits behind my cheekbones and right in front of my ears. My face is beautiful and free. I also wash my nose piece in Dr. Bronners peppermint soap and thoroughly rinse it but it still leaves just a wonderful smell that I look forward to and smile, contentedly spoiled, like I am at a spa when I fall asleep.

I like being able to touch any part of my face at any time and often I find myself fingering my nose piece and actually feel happy, tickled and comforted by my little vented stream of air from my dreamware.

Early on I felt unbalanced and unnatural with all that air being blown just right up my nose. My body didn't understand ... I love the feel of wind in my face. I love fast boats and storms and blowing ....but the xpap was just unnatural? Why couldn't I feel it on my cheeks and hair? I solved that 'unbalance' sensation with always making sure a fan or the air-conditioning is blowing on me. (I'm in Florida) I've ALWAYS liked the feeling of the air caressing me. I sleep with nothing on but my dreamware. It also creates a white noise I like but I don't think the autoset makes much noise anyway.

Now here's the thing I wanted you to think about that I am not sure if you've considered before ...

Love and sex and great relationships and time in bed ... they can (by those with the highest mental capacities) be separated from sleep. You can begin to think of sleep as your personal health and something you do for your body to make all of your life better. Sleep to heal you. Sleep to nourish you.

Max, when I hear that you are being 'shoved' or that you are dealing with someone else's annoyance to your happy little vent *I* get a little 'spike' even through the computer. Perhaps because it happened to me ...before I took control and found a win/win solution.

Please hear me out. I think in my life I might have had sex once or twice while asleep but most of the time I am awake for it. I think there is nothing at all wrong with sleeping alone in your own bed maybe in your own room. You and your wife can start out together, you can cuddle back in together in the morning and if you have to have each other during the night you can simply slip off the mask. (Though I kinda like it with the mask on sometimes?)

The point is, that any consideration about "annoying your wife" with your sleep / health issue is just a completely unfair burden to put on you. This is something proactive that you can do. You can create a spot that each of you can sleep in perfection *alone* ... and that gives you TWO beds to share ...

Now when you recreate the perfect sleep hygiene spot it can be all about MAX! And your wife can create her perfect sensual luxury spot as well. It's Christmas ... make all of your presents this year about 'max -ing out' the best sheets and pillows and anything else you love. Some people want tv, or aquariums to soothe themselves to sleep, others want it cold and dark and naked under sumptuous bedding. The idea is to allow yourself the selfishness to create your perfect sleep space. Make it PRIORITY ONE ...to really get comfortable with your dreamware mask (until they invent a better top mounted option! )... Like one that doubles as a gentle face sculpting lift. LOL

Buy yourself three or four different styles of pillow and prop yourself in all kinds of new incredibly comfortable positions. Spread out all over the bed ... move around and enjoy the feeling that you are not disturbing anyone. Do what FEELS good.
(after you've already spent your romantic time together earlier).

Just commit to spending more time in a variety of beds. I actually went back to an old school full wave waterbed with incredible bedding and it is amazing! (For *me*) but everyone has different fantasies and 'feel goods'. So explore and remember yours...or discover new ones!

Take nice baths, get / use a Jacuzzi, consider massage if you're not skeeved out by strangers touching you? Or just start with them only touching your feet perhaps.

As you focus in on EVERYTHING ELSE ... doing better and taking care of yourself in every OTHER way ... maybe you will chip away at the sleep issue without focusing on it so directly. Goodness know *I* can see you've REALLY been focusing and trying and that makes the most sense in the beginning. Very intelligent. ...but since it's not working with the direct force, maybe this is something that is going to require strategy and finesse.

MaxINTJ? If you want this to work you can make it work. You can also write a comedy routine on the ridiculous design on most XPAP masks. *I* will definitely laugh at your observations!

...but I wish you luck ... I wish you health ... and I hope you will not simply give up. When you can't see the answers down the road you simply have to keep moving forward and then you'll round a curve and Holy COW ... the answers will all be right there. (AND you know where PUGSY is to help when you get to a place you can reach her!)

I once had a temper tantrum in Israel / Dead Sea climbing Masada in August. I felt like I needed to rest and so I sat down and pouted and found a bunch of things to be pissed about ... 'my guy', of course, left me about 30 seconds in to my 'fit' and went on without me. This made me sit there WAY WAY longer than I needed (eyes closed, very angry, cursing, maybe crying?) ... maybe I thought if I stayed there long enough he would get worried about me and come back for me and talk sweet words to me. He didn't. Then an OLD MAN passed me with a spring in his step and I was embarrassed. I sat another ten minutes because I have the will power of a jackass. When I finally decided to start back up? ... I was 20 feet from the top.

[TASmart]

I am really wondering why Max continues to post here. Taking him at his word that nothing works, there is no possible solution anyone here can give him that he has not tried and had not work for him. So is it just to vent? If so, there is no point in trying to come up with solutions. Is just to chronical the trials and tribulations the Max goes through? If so I would suggest starting one thread as an online journal and just post everything there for our viewing pleasure. Looking for pity - just not going to happen. I feel for you Max, I really do. 40 years of bad sleep makes me really appreciate good sleep or in my case not really great sleep but restful sleep. There is nothing that makes a person feel more dejected, angry, hopeless, crabby, cranky and intolerant than never having the energy to do anything more substantial than taking a crap.

But at some point reality is what it is, and constantly lashing out over the internet and asking for help while constantly bemoaning how nothing works is counterproductive. As much as you disparage it, CBT can help to reset your feeling about these problems, into a more productive and less toxic attitude. I encourage you to seek some help with accepting that which cannot be changed, to keep exploring a solution, and stop hating the world because you have problems.

Best luck to you and hoping you can find a solution to your problems.

[MaxINTJ]

Hi Max ~~~

I've caught a lot of your posts and had ideas pop in my head but I am here seeking knowledge and not in a position to offer actual xpap help. So I never responded. Just read and watched.

Let me first say that I could not agree with you more about the dreamware mask. I only tried two masks but that was because there was not another top mounted hose mask to try. I understand the idea that *ALL* front, elephant, nose hoses are in the "NO" category - they are for *me*, as well. I won't go in to an insulting tirade but trust me I could even add a bit more 'spice?' to your contributions of the ridiculously simplistic design idea. It's as if they hadn't considered a human body or how that body sleeps. I want you to know that I understand COMPLETELY and I feel it would be torture to have anything hanging off my face in the center of my body. So for *me* I simply MUST make the dreamware work. Or until they invent another style that is top mounted.

I even have a nice thick bun of hair I put right on top of my head and it really steadies that hose connection. I try to make the nose pieces last as long as possible but I do know now that when I am having issues with the seal or excessive noise I have to break down and use a new nose piece.

What I like about the dreamware is the freedom. Nothing hanging in front of my face. I was able to create even more nakedness and freedom by going to a large frame which I wear tilted back and I was lucky enough that with the small nose piece it sits behind my cheekbones and right in front of my ears. My face is beautiful and free. I also wash my nose piece in Dr. Bronners peppermint soap and thoroughly rinse it but it still leaves just a wonderful smell that I look forward to and smile, contentedly spoiled, like I am at a spa when I fall asleep.

I like being able to touch any part of my face at any time and often I find myself fingering my nose piece and actually feel happy, tickled and comforted by my little vented stream of air from my dreamware.

Early on I felt unbalanced and unnatural with all that air being blown just right up my nose. My body didn't understand ... I love the feel of wind in my face. I love fast boats and storms and blowing ....but the xpap was just unnatural? Why couldn't I feel it on my cheeks and hair? I solved that 'unbalance' sensation with always making sure a fan or the air-conditioning is blowing on me. (I'm in Florida) I've ALWAYS liked the feeling of the air caressing me. I sleep with nothing on but my dreamware. It also creates a white noise I like but I don't think the autoset makes much noise anyway.

Well, we absolutely agree on CPAP masks! I got used to the air after a day or 2 and now don't even notice it unless my mouth blows open. I have even pulled the mask away a bit to see if it's pressurized...

It's just a shame we would have to get a different mask for when we want to sleep standing on our heads.

I don't know what it is, but my wife generally like air blowing on her while I don't. I hide under a cover when she has a fan on. Maybe there is something inherent about the larger masks and people who sleep nude. I feel too covered up by FFMs and I also normally don't wear anything but the mask in bed.

Now here's the thing I wanted you to think about that I am not sure if you've considered before ...

Love and sex and great relationships and time in bed ... they can (by those with the highest mental capacities) be separated from sleep. You can begin to think of sleep as your personal health and something you do for your body to make all of your life better. Sleep to heal you. Sleep to nourish you.

Max, when I hear that you are being 'shoved' or that you are dealing with someone else's annoyance to your happy little vent *I* get a little 'spike' even through the computer. Perhaps because it happened to me ...before I took control and found a win/win solution.

Please hear me out. I think in my life I might have had sex once or twice while asleep but most of the time I am awake for it. I think there is nothing at all wrong with sleeping alone in your own bed maybe in your own room. You and your wife can start out together, you can cuddle back in together in the morning and if you have to have each other during the night you can simply slip off the mask. (Though I kinda like it with the mask on sometimes?)

The point is, that any consideration about "annoying your wife" with your sleep / health issue is just a completely unfair burden to put on you. This is something proactive that you can do. You can create a spot that each of you can sleep in perfection *alone* ... and that gives you TWO beds to share ...

Now when you recreate the perfect sleep hygiene spot it can be all about MAX! And your wife can create her perfect sensual luxury spot as well. It's Christmas ... make all of your presents this year about 'max -ing out' the best sheets and pillows and anything else you love. Some people want tv, or aquariums to soothe themselves to sleep, others want it cold and dark and naked under sumptuous bedding. The idea is to allow yourself the selfishness to create your perfect sleep space. Make it PRIORITY ONE ...to really get comfortable with your dreamware mask (until they invent a better top mounted option! )... Like one that doubles as a gentle face sculpting lift. LOL

Buy yourself three or four different styles of pillow and prop yourself in all kinds of new incredibly comfortable positions. Spread out all over the bed ... move around and enjoy the feeling that you are not disturbing anyone. Do what FEELS good.
(after you've already spent your romantic time together earlier).

Just commit to spending more time in a variety of beds. I actually went back to an old school full wave waterbed with incredible bedding and it is amazing! (For *me*) but everyone has different fantasies and 'feel goods'. So explore and remember yours...or discover new ones!

Take nice baths, get / use a Jacuzzi, consider massage if you're not skeeved out by strangers touching you? Or just start with them only touching your feet perhaps.

People touching my feet would creep me out - anywhere else is usually fine if there's a valid reason.

As for these suggestions, if I was stressed and needed to relax to be able to sleep, they would sound wonderful, but I'm ready for bed by 8:00 and have to force myself to stay awake until 9:00. I really don't need to relax

Sleep itself has actually become a chore. There is no enjoyment in it, it's just become something I HAVE to do because I have no choice. Fighting to stay awake until the late bedtime of 9:00 is just pathetic, but that's what it is now.

As you focus in on EVERYTHING ELSE ... doing better and taking care of yourself in every OTHER way ... maybe you will chip away at the sleep issue without focusing on it so directly. Goodness know *I* can see you've REALLY been focusing and trying and that makes the most sense in the beginning. Very intelligent. ...but since it's not working with the direct force, maybe this is something that is going to require strategy and finesse.

MaxINTJ? If you want this to work you can make it work. You can also write a comedy routine on the ridiculous design on most XPAP masks. *I* will definitely laugh at your observations!

...but I wish you luck ... I wish you health ... and I hope you will not simply give up. When you can't see the answers down the road you simply have to keep moving forward and then you'll round a curve and Holy COW ... the answers will all be right there. (AND you know where PUGSY is to help when you get to a place you can reach her!)

Honestly, if it was possible to use a spare room, I would give it a try - at least until I could beat the Dreamwear into submission (if it ever happened). But, even with a 4 BR home, there is no spare room, and we don't know when there will be (we keep hoping lol). In front of our house looks like a used car lot - 6-7 vehicles when everyone is home.

I appreciate your post, it is thoughtful and well written - thank you.

I once had a temper tantrum in Israel / Dead Sea climbing Masada in August. I felt like I needed to rest and so I sat down and pouted and found a bunch of things to be pissed about ... 'my guy', of course, left me about 30 seconds in to my 'fit' and went on without me. This made me sit there WAY WAY longer than I needed (eyes closed, very angry, cursing, maybe crying?) ... maybe I thought if I stayed there long enough he would get worried about me and come back for me and talk sweet words to me. He didn't. Then an OLD MAN passed me with a spring in his step and I was embarrassed. I sat another ten minutes because I have the will power of a jackass. When I finally decided to start back up? ... I was 20 feet from the top.

I can see myself doing something like that...

[MaxINTJ]

with good numbers you are halfway there

now you have to find out what else is messing up the sleep
not give up on that success

does your wife kick you when you snore
that will mess your sleep up BIG time and make you feel like you do

An ASV gives me perfect numbers with the Amara View. My wife doesn't shove me with that combination.

That combination does not make me feel any better because the mask wakes me up multiple times and I end up taking it off to go back to sleep (for the umpteenth time).

I was prescribed an CPAP and that's now what I'm back to using and my numbers have gone right back to hell - awful like the way I feel.

I tried a pressure of 15 last night and kept getting shoved because my mouth would blow open.

I will not double my arousals by attempting to use the sleep reducing Amara View with the sleep reducing CPAP.

I will try a lower pressure tonight to see if the wind tunnel stops and see if it has any effect on my numbers.

[MaxINTJ]

There is nothing that makes a person feel more dejected, angry, hopeless, crabby, cranky and intolerant than never having the energy to do anything more substantial than taking a crap.

But at some point reality is what it is, and constantly lashing out over the internet and asking for help while constantly bemoaning how nothing works is counterproductive. As much as you disparage it, CBT can help to reset your feeling about these problems, into a more productive and less toxic attitude. I encourage you to seek some help with accepting that which cannot be changed, to keep exploring a solution, and stop hating the world because you have problems.

That top sentence is me exactly.

As for cannot be changed? Well, that cannot be true because I cannot live the rest of my life feeling like this.

And it doesn't matter if some airy fairy magic or heavy duty drugs make me think I'm happy - without sleep there is just nothing worth doing - happy or not.

[MaxINTJ]

you will get used to it
but only if you keep using it

The ASV is fine - the pressure doesn't bother me.

The mask SUCKS and if I'm not used to the mask after a month it's not going to happen.

quote="xxyzx"]cpap with bad numbers is not going to help

keep using the ASV and tell your body that you are NOT special
and it better adapt to that ASV or else[/quote]

I don't have it anymore - I gave it back to the owner. I have a CPAP. That is what I was prescribed. That is why I am having another titration.

but this is still only part of your needs
once you fix the AHI and RDI then you need to fix your other problems

AHI and RDI are zero with an ASV. That fixed nothing because the mask was waking me up as much as the breathing issues were.

[MaxINTJ]

are you saying the good mask wont work with the ASV ??????????????

if its a pressure problem
then turn down the pressure
let the aHi go up a little

but get a lot of benefit

you still need to address ALL your other problems too

one magic device will not be a 100% cure for you when you have so many other problems messing your sleep

The data from last night with CPAP pressure at 15 shows even worse sleep and tons of leaks (wind tunnel).

So, tonight I will turn pressure down some more and probably feel even worse tomorrow because I'm guessing the lower pressures with this CPAP (instead of the ASV) are allowing desats. I have a headache these last 2 days I could not get rid of.

And I don't have any other problems that would not be totally or mostly solved by being able to get restful sleep.

[MaxINTJ]

[quote="xxyzx"lets see now

asv no headaches
switch to cpap
headaches started

do you measure desats or are you guessing

clearly the ASV worked well from all you said
the alternatives do not[/quote]

Yes and no.

The ASV was capable of solving my breathing issues.

The ASV required the use of a mask that woke me up as much as the breathing problems.

I no longer have the ASV and will not have one again unless they prescribe one for me after my next titration. Even then, because of the pressures I apparently require, it will do me no good.

At least until we have a free bedroom where I can sleep until I can maybe stop the wind tunnel effect. That might be years though.

[MaxINTJ]

you will get used to the mask

you wont get used to not breathing

No, I won't. I gave it a over a month. If anything it started waking me up more and earlier.

[MaxINTJ]

you will get used to the mask

you wont get used to not breathing

No, I won't. I gave it a over a month. If anything it started waking me up more and earlier.

==========

you barely got started

you need to keep using it
you will get used to it
but on the schedule your body says not what you wish it were

Last night on CPAP with the only good mask in existence (Dreamwear) and pressure of 12, I had a leak free night.

That was the only thing good about it. For the first time since being on xPAP I had a ton of OAs flagged. I need high pressure, but I also need a mask I can sleep in.

Woke up dead tired with a headache.

[Muse-Inc]

MaxINTJ, I just read this thread and several things occur to me.

Given that CPAP therapy is designed to keep your airways open so air moves freely, it critical you figure out which machine and mask works for you. Figure out which type of machine works best and which exhalation setting works best. CPAP with unvarying inhale pressure. APAP which varies inhalation pressure based on several preceding breaths. BiPAP which allows greater exhalation pressure relief than either CPAP or APAP. I am clueless about ASV machines, so won't post about them.

High pressure might occur because of leaks -- what are your leak numbers? They also occur in mouth breathers not wearing a FFM (sounds like a wind tunnel) very loud as pressure keeps rising.

Each mfg's uses a different breathing algorithms in its machines, find the one that works with your natural breathing patterns. When you do, stay with that brand. A machine that does not align with your natural breathing will have you fighting the machine all night long...some of us are waaaay more sensitive to this than others.

Figure out which type of mask you need: nasal, pillows, FFM (including hybrid style). Hint: mouth breathers need a FFM. The hybrid styles include RespCare (Innomed) Universal Hybrid, Liberty, and the Amara View. Each fits differently. I wear the first one and have since 2009, it was the first of this style and only has 3 parts: pillows, mouth cushion, and plastic shell...well, and headgear. Works well with low and high pressures. Some us make a third strap to ensure the pillows stay anchored as we move around while sleeping.

Exhaustion is miserable, makes decision-making challenging, makes you frustrated, reactive, impatient, and ultimately angry. Good luck finding what works for you. Keep charts to ensure you cover all combinations and give each a reasonable trial. It takes time for the brain to adjust to change. Mine typically takes about 3 weeks; I hope your's is faster.

[MaxINTJ]

MaxINTJ, I just read this thread and several things occur to me.

Given that CPAP therapy is designed to keep your airways open so air moves freely, it critical you figure out which machine and mask works for you. Figure out which type of machine works best and which exhalation setting works best. CPAP with unvarying inhale pressure. APAP which varies inhalation pressure based on several preceding breaths. BiPAP which allows greater exhalation pressure relief than either CPAP or APAP. I am clueless about ASV machines, so won't post about them.

High pressure might occur because of leaks -- what are your leak numbers? They also occur in mouth breathers not wearing a FFM (sounds like a wind tunnel) very loud as pressure keeps rising.

Each mfg's uses a different breathing algorithms in its machines, find the one that works with your natural breathing patterns. When you do, stay with that brand. A machine that does not align with your natural breathing will have you fighting the machine all night long...some of us are waaaay more sensitive to this than others.

Figure out which type of mask you need: nasal, pillows, FFM (including hybrid style). Hint: mouth breathers need a FFM. The hybrid styles include RespCare (Innomed) Universal Hybrid, Liberty, and the Amara View. Each fits differently. I wear the first one and have since 2009, it was the first of this style and only has 3 parts: pillows, mouth cushion, and plastic shell...well, and headgear. Works well with low and high pressures. Some us make a third strap to ensure the pillows stay anchored as we move around while sleeping.

Exhaustion is miserable, makes decision-making challenging, makes you frustrated, reactive, impatient, and ultimately angry. Good luck finding what works for you. Keep charts to ensure you cover all combinations and give each a reasonable trial. It takes time for the brain to adjust to change. Mine typically takes about 3 weeks; I hope your's is faster.

I know the machine that works for me is an ASV - but I don't own one (yet).

I know the mask that allows me to sleep and doesn't (itself) leak.

Together I get the wind tunnel but it's from pressure - I am a nose breather.

Hybrid with ASV = sleepless nights because the mask keeps waking me up until I take it off.

Dreamwear with ASV = wind tunnels all night disturbing my wife and preventing the machine from working correctly.

Dreamwear with CPAP = no wind tunnels but breathing problems all night.

I just trade one problem for another - no combination works completely.