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

[Sleepy Taz]

[quote="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.

Elena,

Air blowing in your face while trying to sleep is unnatural! On another note if it has been found that sleeping without the air causes apneas and is affecting your health then it is in your best interest to find a solution as to why the air is so disturbing. It is your life and no one can tell you what to do with it like no one could tell me that I needed to quit smoking after 37 years at 2-3 packs a day. If I wanted to live longer I needed to quit, so I lived through 3 months of hell until I adjusted. The same can be true for you with the use of a Cpap. You can try wearing the mask with the air on while reading or watching TV for a couple of hour a night. Maybe longer if needed. You could use the power of positive thinking to convince yourself that the Cpap is beneficial and feels good. There are many things that can help you if you really want to be helped. If not it is your life and you can live it as you see fit.

[sister]

Elena, you have been an inspiration to me since I started reading the posts and trying to improve my therapy.I will tell you that I absolutely HATE c-pap too,but I want to live.I have resigned myself to do whatever it takes to succeed!
You can do it girl, you have helped so many people,i just know that you are never going to give up!
I for one do really enjoy your posts and they have really helped me!
Hang in there and keep on helping all of us lost souls that really need you!!!!!!

[kf10]

Elena, sorry to see that you are having so much problem adapting to the treatment. You always very helpful to others.

I am using the same machine and mask. I found that if I have that much air leak from the mask it sure would disturb my sleep. I don't like it if is only 1.2. It will make me very frustrated if I ever aware any leak at all. From your chart, it shows you have leakage from very early on and you are a light sleeper. Wondering if you can ever sleep at all.

Using the FX is very comfortable, lightweight and small, however the adjustment of the two head bands is very critical to prevent leakage. I have to keep adjusting until it fit.

Normally if no leak, I don't even find the mask bother me a bit and I am comfortable enough even if I am totally awake in the morning, I don't want to take it off.

So keep on adjusting the mask and find proper hose management.

You mentioned you have "reactive airway disease", wondering if you can find any remedy for that.

And are you sure you are not getting the benefit of XPAP treatment at all? Or you just feel so weird after a night of sleeping with it, it very out of the routine for what you have been used to, and you actually feel upset/scare...? Just thinking out loud

Best of luck to you!

[elena88]

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.

Okay, good morning! sorry I missed these posts.. I did half and half last night, and I feel great! I also wore my pulse oxi All Night LONG, and it
doesnt look much different thant when I have the apap on.. my oxygen stayed above ninety all night long, and mostly in mid nineties..
Im printing all this and will go over it with my doctor..

Sorry I didnt see your post..
Im not taping anymore, I trained myself to keep my mouth shut. I doubt very much I would ever sleep in another sleep study, and I cant afford to
pay for another useless one.

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

Thanks Jim, I get it.. but what good is a life when you wish you WERE dead? Being the living dead? Being a waste of space and just taking up air on the
planet? That was pretty much my life, and I dont want any part of it anymore.. that is just my situation, and Im thrilled that just about everyone else
has the opposite result.
If I can use the machine half the night, then sleep without it to RECOVER from using it half the night, and I can live again, thats
what Im going to do, until I find out I wake up with the squirrels in the chest feeling.. Its just sickening. I dont know how to explain it.. I feel like
Ive been rotor rootered on the inside of my chest.I fell like someone scraped the inside of my ribs out.. like someone took my lungs and wrung them out... I had many bouts of pleurisy when I was a child, and non stop lung infections all my life, (those stopped several years ago though)

Maybe my lungs just cant take it.. I dont know.. All I know is how intensely sick I feel inside my chest when I wake up with the apap on.. To wake up and
feel like the therapy is "killing you" isnt really the greatest feeling. I think a lof of people would have quit way before this, and Im not a quitter, but Im
also not a masochist.

Now Ive got a ton of things to do, and I feel like doing them.. I will get to the rest of the posts soon.. thanks! I feel so good, its been such a long time,
since I felt like doing anything.. I want to do it all at once!

[Janknitz]

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.

Elena, this statement from the Wikipedia entry on CPAP http://en.wikipedia.org/wiki/Positive_airway_pressure really helped me understand how the CPAP works:

It is important to understand, however, that it is the air pressure, and not the movement of the air, that prevents the apneas. When the machine is turned on, but prior to the mask being placed on the head, a flow of air comes through the mask. After the mask is placed on the head, it is sealed to the face and the air stops flowing. At this point, it is only the air pressure that accomplishes the desired result.

(emphasis added)

Ever put your hand over the end of the hose with the machine running? It doesn't keep blowing harder and harder to build up pressure to blow your hand off the opening, the flow sort of stops and maintains a steady pressure against your hand. It's pretty much the same thing with the machine, except we add things like Flex and EPR so we don't have to breathe out against so much pressure (not so much air flow). That increases the sensation of air flow.

Maybe if you can put that picture in your head, it will not feel like someone is trying to blow you up like a balloon all night.

[djr1215]

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

I think that says more that the whole rest of your message, or indeed any of your messages when dealing with your own therapy.

You're helpful to others but you've given yourself permission to not succeed. So you aren't going to.

[DoriC]

Elena, I'm just wondering why you're able to sleep the first 4hrs with air pressure and not the second half, what's different? Is there some anxiety/panic going on about just the thought of going back to sleep with cpap on that causes that disturbing feeling or is that what's actually waking you which could be mask discomfort, leaking,changing pressures,etc. You know, the chicken or the egg! I think you've got everyone scratching their head! I've noticed your description of your daily routine when you say you're off cpap and feeling fine, and I must say it sounds almost too hectic and overly "busy" but of course I'm the "senior" here. What's probably so frustrating for me is that you seem "this close" to finding a solution and yet it alludes you. Your decision about your therapy is one only you can make but I'm wishing you well.

[elena88]

Elena, I'm just wondering why you're able to sleep the first 4hrs with air pressure and not the second half, what's different?

I cant stand the first four hours, I feel horrible when I wake up, but if I sleep four hours without it, I can RECOVER from the first four hours..

You said: As you know, Im trying to find out any and every way I can to wiggle out of this cpap business!
I think that says more that the whole rest of your message, or indeed any of your messages when dealing with your own therapy.
You're helpful to others but you've given yourself permission to not succeed. So you aren't going to.

Yes, Im trying to wiggle out of it, because it has been ruining my life.. YOU would to, if you had no life, and felt so horrible you
couldnt do anything all day long.. One size does not fit all. I have tried to make this work, I must not be able to get any restoritive sleep
when Im wearing it.. why doesnt anybody get that? Just because a lot of people do, doesnt mean everyone does....
If anyone here was NOT tired or sleepy before cpap, and felt like crap after cpap, then maybe they could understand. Does anyone on
this thread have an epworth scale of ZERO? I did, and I still do. I just came in for a break, been doing all the things I have wanted to do for months in the yard.

Maybe if you can put that picture in your head, it will not feel like someone is trying to blow you up like a balloon all night

thanks for all the info, I appreciate it.. its not the thought in my head, its a physical feeling in my lungs, and extreme bone bending fatigue it
causes.. Im starting to feel like those people who get on that show mystery diagnosis.. Isnt it possible that someone on the planet cant physically
tolerate cpap therapy? I can tolerate it, but I need recovery time afterwards.. I need to get some decent sleep after I wear the apap..

You mentioned you have "reactive airway disease", wondering if you can find any remedy for that.

And are you sure you are not getting the benefit of XPAP treatment at all? Or you just feel so weird after a night of sleeping with it, it very out of the routine for what you have been used to, and you actually feel upset/scare...? Just thinking out loud

My leaks are good, the RAD is sort of like asthma but medication doesnt fix it.. I was upset and freaked out about the first week, then after that, I kept
sticking to it, after six weeks, it starting to take an enormous toll, and I knew something was wrong.. Its as if I hadnt gotten any good sleep for weeks,
and it began affecting my life at home.. I was going to quit, but you guys helped me to keep going.. its been six months, Im used to the therapy..
Im used to how it makes me feel.. I just dont want to feel like that anymore..

I know everyone here is pro cpap.. so am I.... I had no idea this would be such a struggle, I sure wasnt planning on it. and I enjoy encouraging
others.. but, I have seen what happens when someone says they dont want to wear their cpap, many try to be understanding and supportive, while
others act like a pack of wolves going in for the kill..

i just know that you are never going to give up!

thanks, Im not giving up, Im just so glad I found something that will work while I keep looking for the perfect solution.

If I missed someone, thanks for all your support and help, and ideas. At least now I can function, and better functioning might lead to finding
an answer faster.. SO THANKS!

[LoQ]

why doesnt anybody get that?

Well I get it. What you describe feeling with PAP therapy is similar to how I felt before CPAP therapy. What you describe feeling without PAP therapy is the nirvana I seek. So I do get it. And I admire you for sticking with something that makes you feel that crappy. I'm pretty sure I would not stick with PAP therapy under those conditions. Good for you for hanging in there.


I must confess that I have not followed your story carefully. There has been way too much on it for me to be able to keep up to date on your saga, so I won't make any suggestions for changes, because I'm sure they've already been made. I did want to ask if the other symptoms that resolve with PAP therapy are also resolved with your half-and-half solution? If so, maybe that is your answer, even if it is not completely satisfying.

I have seen what happens when someone says they dont want to wear their cpap, many try to be understanding and supportive, while
others act like a pack of wolves going in for the kill.

That may be a little extreme in characterization, but I can certainly understand why you say that. I believe the people naturally tend to relate most strongly to their own experience. Anything that deviates from that doesn't resonate with them, and they have a hard time accepting that other people are genuinely having a different experience. They want to attribute it to ignorance or stubbornness or something that explains it other than just "people are biologically different."

You also have to realize that the vast majority of people complaining they don't want to wear the mask just haven't understood yet how MUCH effort on their part is required, and many of them are looking for excuses not to do so. That isn't you. They also are unlike you in another regard, in that most of them will be able to tolerate it if they just stick with it.

Your case is a statistical outlier, maybe 4 or 5 sigma away from the norm. Think of yourself as one in a million!

[elena88]

Your case is a statistical outlier

OMG, if you only knew!
My husband would be rolling on the floor laughing at this its so true in almost everything!


Thank you so very much for your understanding.. after reading what you wrote, I dont feel so much like an outcast..

I so appreciate what you said.. youll never know..

elena

p.s thank you to everyone who has helped me with the graphs, the stats, the questions... just a big thank you and a big hug to all of you for
all the support youve given me.. amazing.....

[Beachmeezer]

Elena - My response probably won't be popular with most. Like you I couldn't do but a few hours at night and that was a struggle. I talked to my sleep therapist and my family doc and we went the Ambien route. It was the only thing that helped me aclimate to the mask. If I woke up, I couldn't fall back asleep with the mask on. I cried for a few nights, my husband was frustated and we were all exhausted - I hope I never have to repeat my first week on CPAP. However, my health wasn't great and my sleep apnea severe so I was determined to make this work. I don't take Ambien now - I just used it to help me sleep through the night in the beginning. For me it was a quick transition but the Ambien help made the difference.

You have to find what works for you at your own pace. You know your health will be better the more hours that you are on the hose. I struggled at first but now can sleep through the night without sleep meds.

This board has been so helpful. For me the one thing that made a difference was mask liners. Something that small. You keep plugging away and you'll find what works for you.

Kim

[Muse-Inc]

From Wikipedia:

Reactive airways dysfunction syndrome
Reactive Airways Dysfunction Syndrome or RADS is a term proposed by S.M. Brooks and colleagues in 1985 [3] to describe an asthma-like syndrome developing after a single exposure to high levels of an irritating vapor, fume, or smoke.[4] It involves coughing, wheezing, and dyspnea.[5]

It can also manifest in adults with exposure to high levels of chlorine, ammonia, acetic acid, sulphur dioxide, creating symptoms like asthma.[6] The severity of these symptoms can be mild to fatal, and can even create long term airway damage depending on the amount of exposure and the concentration of Chlorine. Some experts classify RADS as occupational asthma. Those with exposure to high irritating substances should receive treatment to mitigate harmful effects.[7]

Elena, were you exposed to something that damaged your lungs? Lungs take a long, long time to recover if they ever do...I had bronchitis 3 times in 1 yr and doc said to plan on at least a full yr free of illnesses for recovery and I was in my 40s then. Asthma is often described as a low or deficient magnesium situation as magnesium calms the twitchiness that is asthma. Have you ever given a trial of magnesium citrate, taurate, or glycinate a trial, say 400-600 mgs in divided doses each day?

What was your AHI in the sleep study that initiated CPAP therapy?

[janalee]

Elena,
I feel for you, I really, really do! As we all know, dealing with CPAP (or any other version) is not a one size fits all type of treatment & as much as I personally wish that it was, everyone is different & only you know your body best! Even though I don't really know tons about you, what I do know is that you're not a fly by night kind of person, you're not a quitter & you're clearly very concerned about your health, otherwise you wouldn't be here in the first place. I truly wish I had an answer for you, a magic pill or wand or something. Feeling lousy & not being able to function is so difficult to deal with, I get it, I really, really get it & I don't think anyone else can understand unless they're experiencing it personally. I give you so much credit for trying & trying & trying some more & I also give you additional credit to come up with creative ways to make life better, again, only you understand how you're feeling with & without the CPAP & it's your decision to make. I REALLY GET IT!!!
Good Luck!
Janalee

[Bons]

[quote="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..

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.

Elena,
Have you considered talking with a psychologist, pastor or other counselor about this? In a different post you said something like "I just want my life back". Sometimes dealing with medical issues can be easier with professional support so that we can accept our "new normal". Perhaps it is feeling dependent upon the machine that's triggering this, or some unconsious fear....or maybe he/she can just help suggesting techniques to help you go back to sleep without removing the mask?