If compliance is 4 hours is that all you need for therapy?

[elena88]

As you know, Im trying to find out any and every way I can to wiggle out of this cpap business!

Here is my latest approach, and two nights do not a trend make but MAYBE?

I know medicare/insurance arbitrarily picked four hours as a compliance time... Why is that? will four hours a night be theraputic?

Will four hours a night stop all the nasty things that happen to your body if you dont wear it at all? Do some people only sleep four hours a night?

Can some people only tolerate four hours a night? (that would be me!)

I dont have to worry about the four hours for compliance issues, as my insurance pays for none of this..

However, all the nights I dont use the apap, I feel great in the morning.. (and I feel like crap all day the days I do wear it all night)
BUT, what if I wear it for four hours at the beginning of the night, then two, three, four hours without it the rest of the night?

So I tried that the last couple nights.. and guess what? I am functioning again! I have energy again! I feel good again! Okay, so its just two nights..
but this way I can get half apap sleep, and half of my "normal not disturbed by air blowing into me" sleep..

I think this is a good comprimise, and im going to present it to my sleep doctor next week. PLUS, I make sure I sleep on my side or tummy
when I dont have the apap on.. and I have my little oximeter to wear too.. Im still working on the graphs with and with out the apap for the doctor..
Im so hoping she says half and half is okay!

[LSAT]

The number of hours mean NOTHING. When you sleep you need to breath. Every hour you are sleeping you need your CPAP.
With all the posts you are making you seem to understand how important the CPAP is to good health....I don't understand why you are having so much trouble with your compliance...I think you should temporarily forget about your graphs and oximeter and concentrate on sleeping with your CPAP

[elena88]

The number of hours mean NOTHING. When you sleep you need to breath. Every hour you are sleeping you need your CPAP.
With all the posts you are making you seem to understand how important the CPAP is to good health....I don't understand why you are having so much trouble with your compliance...

I agree with you..

when you sleep you need to breath.......

But there is a quality issue involved.. of both sleep and breath...

I do understand how cpap is important for the people who it works for.. just look around there are tons of people who feel better on cpap, Im not
one of them, this explains my compliance issues.. not to mention I was never friggen tired or sleepy before cpap..

I like to be supportive to people, most everyone is going to improve on cpap, and I want to cheer them on..
Im not going to tell them... "dont bother, this sucks, it wont work, I hate it, its made me worse, my life sucks, I cant do anything I used to.. because, Im one person, and Im not the norm, and Im trying to STILL make it work anyway I can.. I view half the time is better than no time, and Im really close to just quitting all together.. so this is my compromise..

[brazospearl]

elena, bless your heart! Is using the machine 4 hours a night gonna give you the best therapy? Nope, but you know that already. Is using the machine 4 hours a night better than using it 0 hours a night? Probably. If you can do 4 hours a night EVERY night for awhile, that might get you to the point where you could manage 5 hours a night, then 6, and eventually be sleeping blissfully on your machine all the time. You know that using the hose is improving your health, and I admire your persistence in trying to find a solution to your (really, REALLY odd!) situation. I might be in the minority here--and I DON'T think this is good advice for everybody--but in your special circumstances this regime just might do the trick.

That said, to newbies & others who are struggling to adjust: before you decide to try elena's 4 on/4 off schedule, read ALL of her posts about what she's tried so far. Once you've tried ALL of that you might consider her plan...

[Bons]

It would work if you could somehow convince your body to only have apneas in that four hour span. I have been really tempted many of these 15 nights to take the (%^ thing off half way through the night but I've managed to keep it on all night, with the exception of the one in which I got tangled in the hose at 4:30 and had to be up at 6. Must be one of the few advantages of childhood abuse - I can tolerate a lot.

My problem isn't me working with the machine - it's that the machine isn't working for me. I'm very tempted to go papless until I'm titrated for the bipap, but I'm pretty sure that if I justify one night without it I could slide into making excuses on lots of nights. So I'm trying hard to condition myself to sleep with it.

I like the earlier idea - if you are going to use it only part of the night, commit to extending that length of time over a couple of weeks or months. Good luck!

[LoQ]

That said, to newbies & others who are struggling to adjust: before you decide to try elena's 4 on/4 off schedule, read ALL of her posts about what she's tried so far. Once you've tried ALL of that you might consider her plan...

I think in particular they need to try sleeping with their panties in a bunch and see how THAT goes.

[KatieW]

Elena, I have read your posts, and watched your struggle, and my heart goes out to you, because I know it's not for lack of trying. I don't agree with your logic, but I suppose anything is better than giving up completely.

[elena88]

okay you guys, thanks for your input, as always I totally appreciate it!

All I can do is see the results Im getting, and I managed to pretty much tear up the side yard and redo all my rock paths, plant plants rake
seven large bags of leaves, do six loads of doggie blanket laundry... make some homemade soup. have a couple friends over, wash the dogs,
and Im still going..

So, to me, that is getting my life back..

an all night with the apap, Im lucky if I can do one load of laundry.. thats a big day..I sit around exhausted, Im totally useless, and it was getting to me..
I MEAN really getting to me... it was making me very SAD, like I was never going to get my life back..

So Ill try this for awhile.. and okay, maybe I will try to increase an hour or two next month.. but I dont think that is going to work..
I think it so disturbs me while Im sleeping, that is why Im so wiped out in the morning..
Half the night is better than nothing, and I just about gave it up for good last night.. and my husband and I had a big go around at three am,
so I agreed to half the night.

Also, yes, I think a good hazing for newbies is sleeping with their panties in a bunch!

[Goofproof]

Four hours is the time, deemed by medicare and ins, to be the least time you can use your XPAP, and still qualify for them not to RIP the equiptment out of your control. It saves them money if you won't comply with treatment. They have $255 set aside to pay your kin when they put you in the ground. Not much money for a life of De-Nile! Jim

[ozij]

Elena, have you had a sleep study with your own cpap and mask and tape (if you're still taping)? If cpap is having such a good effect on you heart, and such a bad effect on your quality of life, there must be something else going on, now that the cpap is letting you get the oxygen you need.

A PSG to check what is going on when you sleep with your CPAP is an absolute must at this point, if you want to take care of your health.

[Muse-Inc]

So, Elena, what's your biggest 'physical' challenge to successful CPAP therapy? We already know you don't want to sleep with equipment, so what is it that's not working well making you resist this therapy so strongly? Being exhausted the next day doesn't help identify what is not working, that just says some aspect of your setup is not working well...the key is start tackling each issue one by one. I know you've tried any number of things...maybe stating a summary will cause you to see something in a new way, or maybe someone else will see something and offer a possible fix.

• AHI/AI numbers high meaning therapy is less than effective
• Mask issues
• Breathing algorithm doesn't match your breathing well
• Too many arousals at night
• Congestion
• Meds messing with sleep architecture
• Can't fall asleep/can't stay asleep
• Restless legs
• Hyper-sensitive to stimulae
• Getting up to pee too often

What?

[elena88]

Hi there muse, thanks for your interest.. but Im pretty sure, this is how Im going to have to do my therapy..
half and half..

What is my biggest physical challange to successful cpap therapy? I would say its the air blowing into me all night long. My machine is very nice,
I love my nose pillows, I cant even feel them.. I love the algorithm, its very soothing.. I dont have a high pressure. Its not any of that..
Its just the air blowing into my lungs which disturbs my sleep, it disturbs me. The ACTION of the air blowing into me, disturbs me very much.

Last night was a very good night as far as the numbers go, I will post the graph.... but when I woke up, I wanted to quit.. I couldnt take it anymore.
I was done.. done done.. got in a big fight with my husband.. whole nine yards.. I didnt have a lot of leaks, ahi was great.. yadee yadee..

It doesnt matter if I have great ahi, no congestion, the planets are in alignment.. it doesnt matter, the air blowing in me upsets something in
my body. I dont take any meds, I have no PLM... I just am totally wiped out when I wake up with it, and Im bright and and bushy tailed when
I wake up without it.. so its a done deal.. six months, four machines, lots of masks, already had every thing checked medically.. Maybe I am just
hypersensitive to the feeling of "forced" respiration.. thats all I can think of.. I do have RAD (reactive airway disease) but I dont know if that
has anything to do with it or not.....

Here is last night, four good hours sleeping with it, and I couldnt take one more minute.. this is a very good graph for most people..
I took it off, felt so horrible, I knew it was game over with this, and I slept the rest of the night on my stomach, and felt great this morning..
Im doing half and half, thats going to have to work, or its nothing at all.

[chunkyfrog]

As the air blows into me, I feel grateful.
It is life, and I want to have it all.
Sometimes it goes down the wrong way.
And I puke if I don't get the air out before I eat breakfast.
That was really good bacon. . .

[elena88]

chunkyfrog,

you are a such a poet!

[ZQuest]

Hi: Elena

I agree with Muse she has a great suggestion with making a list,and taking a step back and looking at what may be the possible cause of your cpap problem's.In any case you have to be your own advocate,you have the tools to monitor your therapy,and only you know how you feel if 4 hrs. on and 4 hrs. off work for you then that is better than none at all,but please KEEP track of your therapy. After reading some of your posts with your positive attituded towards Cpap and the great advised that you have given to some newb's like myself i know that you will find a solution to improved on your therapy it just take time.



Regards Phil