I QUIT

I suspect that, as long as you see CPAP as something that your doctor ordered you to do, that you will never accept it and comply fully. It needs to be something that your choose to do, because it has benefits for you. If it doesn't have benefits, then quit.

Colin

Whenever I realize that I'm chained to this stupid machine for life, I can get really depressed. But, like everything else, I keep reminding myself that the alternative is worse. Right now, CPAP is the treatment for Apnea, and I have Apnea. No getting around that. Until the next space-age treatment comes along, those are just the cold, hard facts. Sucks, but that's the truth.

M9

lifeartist59 wrote:Is it better to lose hours of sleep trying to be compliant or take off the mask and sleep, albeit with the apnea?

My opinion is it's better to use the CPAP even if you get less sleep, because the sleep you ARE getting is at least good sleep. In other words, if you sleep three hours a night with the CPAP, you get three hours of good sleep. If you sleep eight hours without the CPAP, you get eight hours of O2 desaturation that is actively damaging your health. I know it's not an apples-to-apples comparison, but there you go.

M9

dear guest (potential) quitter, i have been reading this post with great interest at some of the comments, both good and bad as you have stated. i was very fortunate to have a nurse in my sleep study who knew what the hell she was talking about (both time same nurse, fate was on my side). i had to move to one of the most remote areas in australia to see an old counrty doctor who said, gee i think you have OSA. when i previously spent thousands on specialists in one of the biggest cities in the world! i drive 5 hours one way to get to the nearest hospital and i was none to keen but did it. lo and behold i was told in 3-6 months i would have been dead of heart attack or stroke, not because i have heart disease but the severity and length of the episodes. i dont have the luxury of trying differnt masks and machines easliy because of where i live. i have found the internet (like this site) and buying on line the best source. been doing this pretty much on my own except for the wonderful folks on this site. i can honestly say there hasnt been one day when i said i cant do this. it hasnt been easy as we know, but i think of my kids and husband who want me around, i am only 44. i have explored much of the world and am considered by many to be an extreme adventureist, or i never would have moved from the big smoke of Melbourne 4000km into the wilds of the tropical rainforest.

one has to decide what is important to them. i beleive it to be selfish to deprive the people we care about by not caring about our selves and our health and leave them in the lurch by giving up and going 6 feet under if there is something we can do about it. it's not fair to ourselves not to try to give ourselves the best of what life has to offer while we are on this plane of existance, you must think about what is important to you. if you give up you will never know what could have happened. is that something you can live with? can you keep looking at yourself in the mirror? maybe, maybe not.

try something called systematic desensitisation. this means one small step at a time. go 2 hours and dont throw the mask across the floor, gently put it next to the bed and say "ok i made thru 2 hours, tomorrow i am going to try for 3". if this is the only way you can do it, so be it. talk to a psychologist about this, its used often to get people over fear of flying or snakes/spiders. it doesnt work for everyone but it might work for you.

look at other things in your life that you found hugely difficult yet conquered and come out the other side. remember the sense of pride in yourself and your accomplishment. dealing with cpap can be very much the same. you take the power and control over your life, seize it, make it your own.

i used to be terrified of spiders and snakes, i grew up in the great rocky mountians and dealt with grizzly bears, wolves and mountain lions sometimes on a daily basis, no worries. i moved to Oz 9 years ago and have never looked back. i had to learn to over come my spider fear as we have some of the biggest and tiniest but nastiest in the world. we have i think 5 of the 10 most posionous snakes in the world. i now live in a place were the most deadliest snake in the world crosses our main street on a daily baisis. we just let them do their thing and we do ours. i now frequently have spicers as big as dinner plates on my bedroom wall. i can now put a large bowl over them, scoot them into it and carry them out and relocate them on some nice bsuh outside, i now do this without fear, i still scream with fright occasionly when a snake wanders into the house but i have leaned to cope. i cant quit i chose to live here and i share their living space, they earn their keep by eating bugs and mice. i dont harm them they dont harm me. i cant swim in the ocean off the beach because of the crocodiles, but i can see the great barrier reef from my bedroom window and go out there whenever i want. i come face to face with sharks, first time was wild, but they live their life and i watch them with great respect.

the moral of this rambling tale is that one overcomes fears when they have to, if they truly want to. make the choice, only you can, no one can do it for you. you have to want it. i chose to live and cpap enables me to do so. i respect my self as i repect the wild creatures around me. one learns to live in harmoy with their surrundings, or one always lives in fear. to quote author frank herbert, "fear is the mind killer-i will face me fear and let it pass thru me-only i will remain"

GVD

I know. It is very difficult... the most difficult thing we all have to deal with. I absolutely understand.

What kind of mask do you use? I use a nasal mask and it doesn't bother me at all.. are you a mouth breather? Have you tried any different masks? I have tried out a couple and they were awful and I know that if I didn't find a mask that fit me good, I would be miserable.

Please think about it this way... it's either this or not using it could kill you... a stroke or heart attack could happen... or worse. Believe me, you would rather not be dead....death is final.

Please stay with the forum... read all the frustrations and emotions people experience.. you are not alone.

Well now, isn't that special. There’s actually another person who dislikes or hates the machine, the hose, the mask, the forced air, the OSA... and whatever else? How quaint.

As though anyone except a true bondage aficionado, or masochist could crave and relish being strap-faced every time they sleep. Well, if they value having many, many more nights to sleep, and then wake afterwards they’ll at least try extremely hard to accommodate it.

In the 5-years of the doctors having me on the wrong machine and mask, and constantly insisting that I was, “not trying hard enough,” “not trying to comply,” “not being a good patient,” “not giving in to the therapy”….. I was in pure hell. I refused to die, and was close multiple times with clots and plaque from my edema-laden legs traveling through me. My answer, frequent doses of brown vinegar and chewable aspirin, seems to have offset any major damage of effects from those events.

The truth is, many doctors still do not relate in plain words to patients how direly serious and potentially deadly OSA and other Sleep Disordered Breathing maladies are. I was never informed in such terms by the RT’s, PCP’s, or any other doctors involved in my care during those years. Not even by the DME’s RT that handled my machines. I was left to think that it was “just a sleep problem” with no byproduct effects other than being tired all the time and lacking stamina. They kept stating to me that all of my other problems….. multiple neuropathies, fibromyalgia, denervation / reinnervation, diabetes, daily, excruciating migraines, memory problems etc had other causes and were unrelated. Yes, “unrelated to OSA” as I was told by the doctors.

In fact, they caused me to suffer more damage by not having me on the right machine and mask during those 5-years, and by not relating in simple words that my overall health and ultimate longevity depended on getting good to great xPAP therapy consistently on every night.

I’m not a masochist or bondage freak, but I’ve learned to more than just tolerate the mask and machine. I’ve welcomed it to be part of my life and routines, because I want to live. I guard the machine, mask and accessories as I guard my wallet.

“Life may be unfair, but being unable to be the 100% healthy star of the game is far better than being boxed and buried under the playing field. “

Yep, Nodzy said it.

I’m not a masochist or bondage freak, but I’ve learned to more than just tolerate the mask and machine. I’ve welcomed it to be part of my life and routines, because I want to live. I guard the machine, mask and accessories as I guard my wallet.

Nodzy, your commentary was excellent.

May I suggest
ONE DAY AT A TIME?

Many, many thanks to those of you who posted good suggestions and did not make light of the struggle to use cpap!!! I know the original poster said they quit, but there are others of us struggling and looking at these posts too. Sometimes I consider it(quitting), but I have always tried to work with my doctors through other things (see my earlier posts in this subject) and so I keep trying. But as I mentioned, there needs to be a lot more research on apnea treatment since I read of such high rates of non use ( I hate the term failure or non compliance, I used to work in the legal field and don't see any laws being broken )
I do try the use it for a couple hours, take it off, next night a little more. It seems to work to a point, but not every night. I read an article about what is considered compliance, and USA medicare/medicaide says 2.5 hrs or more a night, and the rt's want it it be 4 hrs or more a night with this being at least %70 of the time. I can do that, but the whole night seems a stretch at this point. I did not have issues with oxygen getting too low during my tests, and I feel the testing needs to simulate how you actually sleep at home more. I seldom if ever sleep on my back but had to in the study. I know this worsens apnea. This seems a little like a self fufilling prophecy. Anyway, I will keep on trying. I think I am going to try a nasal mask, I use the pillows right now and if they are not just so in place I have to gasp for air. Thanks again to all of you who posted suggestions!!!

In light of the many posts that this thread has recieved. I've decided to do a little more research regarding the situation. I talked to someone at the sleep center where I was initially tested and ultimately diagnosed for osa and found someone there who was and is willing to sit down and discuss my complete discomfort (HATE) of the whole cpap treatment with me. Also discuss, and possibly try different masks.
I can honestly say that I don't know what the outcome will be, but it might elude to the cpap coming out of the closet and back on the nightstand. I have to be honest though, I am not one that can see myself doing this for more than one or two nights. If that long at all. I certainly will consider a longer time frame though. I know that many, if not all who are diagnosed with this, struggle with it. I must also admit that I find the entire diagnosis embarassing to the point of extreme for me. Something as simple as sleep being something that I can't do right. This is a secret in my family, no one knows of this embarassing condition that I hide. I even had a hard time bringing it up to my wife. So, I just wanted to post about the way that it's viewed by me.
Thanks again.

Awesome that you are going to try some other masks!!! Many Members have tried different ones... let us know if you are a nasal mask or full-face mask wearer.. we can help!

Don't be embarrassed... I'm the only overweight person in my entire family (on both sides) and feel their eyes all over me during Holidays (I wonder if she is going to have two plates of food feeling)... I get lectured on how I have "such a pretty face" and that I really should loose weight (no sh*t). They didn't even say one comment over the Holidays about the 50 pounds I have lost.. not one word of encouragement or "Wow.. you look better." I really thought about it and I am loosing weight for MYSELF and going to extend my life for MYSELF and I am not going to give two squats about what my family think anymore. They are a negative pitfall and I am not going to let them get to me..

I leave my CPAP out on the nightstand in plain day... just like my dad left his glucose machine and little strips out.. he wasn't embarrassed he had diabetes.. it was something he could not control.

CPAP is becoming more known about.. and frankly... I am proud to be alive another x amount of years to watch my children grow up. I wonder how many relatives in my family have "secrets"...? I know a couple are alcoholics and some smoke pot... and are addicted... now THAT is something to hide.

LONG
LIVE
CPAP!!!

Guest, it looks like you are in the Denial stage, reaching for Realization. In the light bulb above, see cpaptalk-articles/CPAP-stages-feeling-good.html

It also looks like you are in the Intolerable stage. See cpaptalk-articles/recovery-CPAP-adaptation-stages.html

The point is to not get stuck in an early suffering stage, but realize there are other stages too. You have the choice to sabotage your health or revamp your mind and succeed. The real failure is not failing at sleeping. Can you consciously control the anatomy of your throat? The real failure is giving up when there is a way out, even if it ain't easy.

Check out the other articles in the Help for New and Struggling Users section and the rest of the light bulb articles.

Best to you, no matter what you decide.

Anonymous wrote:In light of the many posts that this thread has recieved. I've decided to do a little more research regarding the situation. I talked to someone at the sleep center where I was initially tested and ultimately diagnosed for osa and found someone there who was and is willing to sit down and discuss my complete discomfort (HATE) of the whole cpap treatment with me. Also discuss, and possibly try different masks.
I can honestly say that I don't know what the outcome will be, but it might elude to the cpap coming out of the closet and back on the nightstand. I have to be honest though, I am not one that can see myself doing this for more than one or two nights. If that long at all. I certainly will consider a longer time frame though. I know that many, if not all who are diagnosed with this, struggle with it. I must also admit that I find the entire diagnosis embarassing to the point of extreme for me. Something as simple as sleep being something that I can't do right. This is a secret in my family, no one knows of this embarassing condition that I hide. I even had a hard time bringing it up to my wife. So, I just wanted to post about the way that it's viewed by me.
Thanks again.

I understand the struggle, both physically and mentally. I am from the U.S. and, until recently, have worked overseas for the past 8 years. I didn't know anything about cpap's, apaps, osa, ahi's, etc... until my neurologist who I see for migraines referred me to a sleep study. However, once I started talking about it, it seemed like everybody I know either has one or knows somebody who does. It is much more common that I would have ever believed. Nothing to be embarrassed about, you did not choose this (none of us did). In many cases, it is hereditary. I have struggled for about 5 weeks (when I first got my machine). Last night was the first full night of sleep with the mask on. I cannot deny that I felt better today than usual. Much better than yesterday (I did not use the machine at all the night before). Best of luck with your struggle. Remember, knowledge is power. Keep reading on this forum; lots of knowledge here.

Without getting too spiritual or creepy I would also take a hard look at yourself and consider what might best help you on the path to good health and contentment - either with or without CPAP. "Hate" may just be an inexact choice of words meaning something more like disappointment.

CPAP is an inanimate, often uncomfortable, perhaps in some ways limiting and perhaps embarassing machine. Nobody wants a seat reserved for them on the "short bus" as we used to joke as kids referring to busses for the handicapped. But there is no need to hate it - put it in a box and in a cupboard. Or conversely when you are ready to pursue what it has to offer with committment sufficient to overcome the negatives, take it out and try to make it work for you.

There is definitely a pathway to tread that is not easy - but a clarity of mind about why you are on the path can be a huge help.

But choosing to continue or discontinue something that might provide a path to holding a grandchild in your arms, a thousand sunsets, the company of a lover or friends, accomplishments ... health is only a pathway to experience. I'm on CPAP because I love my family, I love my friends, I have dreams and aspirations that will be constrained if my health is constrained.

It may be the first item needing attention is your feelings and self-view, to place the need for CPAP in context, weigh the advantages and disadvantages, and then from there it might be easier to build a resolve and certainty about whether or not CPAP can help make your life better.

Alot of people who refuse treatment significantly raise their risk of sudden death if their OSA is serious. I suppose there are people out there who in all honesty say that is a risk they are willing to take. Myself I was knocked back on my heels when I was denied life insurance coverage as a result of the OSA diagnosis - and I redoubled my committment to become compliant.

Whichever way you choose, I hope it is what's best for you.

It is good to see the response of the original poster. I hope you find something that works for you. I did notice some people mentioning the weight issue, and would like to mention that I was told there is NO guarantee that losing weight will make you not need a cpap. I have a very small mouth (physically, though I sure can talk hahaha) and my doctor mentioned that it may always be a problem? I still want to lose more weight, and it seems to be possible since I keep dropping about a pound or two a month. I exercise very regularly, 40 minutes or more 5 days a week. I just don't want to see people get a false impression that it is only an overweight issue. Also, does anyone know if people with tmj are more prone to apnea? I have had problems during surgery due to tmj and my jaw not opening enough so I wonder about this too. Thanks again to everyone for help and ideas too!!!!