Diagnosed with OSA but won't use CPAP. Why?

I would like to hear from those diagnosed with OSA and will not use CPAP (or use it infrequently). Why did you submit to a Sleep Study and decided to simply live with your symptoms (Excessive Daytime Sleepiness, Cognitive Impairment, etc).

Are you looking for an excuse not to save your life? The thing is, this forum is for people who are on Cpap, or at least trying their best to make it work. I don't know how many non-users you'll find.

justasking wrote:I would like to hear from those diagnosed with OSA and will not use CPAP (or use it infrequently). Why did you submit to a Sleep Study and decided to simply live with your symptoms (Excessive Daytime Sleepiness, Cognitive Impairment, etc).

They don't tend to hang around the board - most go off in a huff because we "don't get it".

Julie wrote:Are you looking for an excuse not to save your life? The thing is, this forum is for people who are on Cpap, or at least trying their best to make it work. I don't know how many non-users you'll find.

I'll jump in.

I recently sold my machine to a board member because I gave up on it.

I was getting less sleep with it than without and everything about the experience drove me nuts. Though, it did prompt me to drop weight, which has helped substantially as far as sleep quality and energy levels go.

If I could use it, I would probably benefit from the CPAP. However, I can honestly say that in the grand scheme, I'm happier without it than with.

justasking wrote:I would like to hear from those diagnosed with OSA and will not use CPAP (or use it infrequently). Why did you submit to a Sleep Study and decided to simply live with your symptoms (Excessive Daytime Sleepiness, Cognitive Impairment, etc).

I was first diagnosed with OSA about 6 years ago. The pressure on the CPAP machine was set to 13 with no exhale relief. I would wake up over and over because my cheeks would fill with air until finally the air was forced out between my lips. I talked to my doctor about prescribing a different machine that would give some exhale relief, but he just kept telling me I simply needed to try harder. (That doctor owned the Sleep Study Center as well as the DME. I think his focus was more on his profit-margin than on my well-being!)

The Sleep Doctor I'm using this time is great. We had a lengthy discussion about my previous problems and concerns and he assured me that he would make sure I got a machine with exhale relief. This time around I have been 100% compliant since Day 1.

Fizzled wrote:

Julie wrote:Are you looking for an excuse not to save your life? The thing is, this forum is for people who are on Cpap, or at least trying their best to make it work. I don't know how many non-users you'll find.

I'll jump in.

I recently sold my machine to a board member because I gave up on it.

I was getting less sleep with it than without and everything about the experience drove me nuts. Though, it did prompt me to drop weight, which has helped substantially as far as sleep quality and energy levels go.

If I could use it, I would probably benefit from the CPAP. However, I can honestly say that in the grand scheme, I'm happier without it than with.

No doubt you are happier now, ask yourself in a few years when you've wrecked your health, or had a stroke, or found a tree your car couldn't roll over.

Maybe if you survive long enough you will learn that things you do now will affect your future, the choice is only up to you. Enjoy today, they only come one at a time. Jim

Fizzled wrote:

Julie wrote:Are you looking for an excuse not to save your life? The thing is, this forum is for people who are on Cpap, or at least trying their best to make it work. I don't know how many non-users you'll find.

I'll jump in.

I recently sold my machine to a board member because I gave up on it.

I was getting less sleep with it than without and everything about the experience drove me nuts. Though, it did prompt me to drop weight, which has helped substantially as far as sleep quality and energy levels go.

If I could use it, I would probably benefit from the CPAP. However, I can honestly say that in the grand scheme, I'm happier without it than with.

I avoided cpap treatment for at least 10 years, knowing full well I had sleep apnea. I thought it was just lack of sleep. I didn't realize it was lack of oxygen and causing long term health problems. I figured I couldn't do a sleep test since they are never during my sleep time. I go to bed between 4 and 6am and sleep until 1 or 2pm. I also thought all cpap treatment was with nasal masks, and I am a mouth breather.

Once I learned that I could take an ambien to sleep during the sleep study and full face masks would be available, I was open to the idea of trying it. I am so happy I did. I wish I had gotten it treated 10 years ago. It didn't bother me back then, but it sure has taken its toll on me.

star444 wrote:

justasking wrote:I would like to hear from those diagnosed with OSA and will not use CPAP (or use it infrequently). Why did you submit to a Sleep Study and decided to simply live with your symptoms (Excessive Daytime Sleepiness, Cognitive Impairment, etc).

I was first diagnosed with OSA about 6 years ago. The pressure on the CPAP machine was set to 13 with no exhale relief. I would wake up over and over because my cheeks would fill with air until finally the air was forced out between my lips. I talked to my doctor about prescribing a different machine that would give some exhale relief, but he just kept telling me I simply needed to try harder. (That doctor owned the Sleep Study Center as well as the DME. I think his focus was more on his profit-margin than on my well-being!)

The Sleep Doctor I'm using this time is great. We had a lengthy discussion about my previous problems and concerns and he assured me that he would make sure I got a machine with exhale relief. This time around I have been 100% compliant since Day 1.

Doctor 2 is better than 1, but if he had really wanted to help he would have got you a machine that records full data that could be read with software. Then you could see how your treatment is really doing.

If you're doctors were selling cars, dr 1 would have sold you one without brakes and a steering wheel, dr2 would have sold you one with brakes, but no steering wheel, the good dr3, would have got you a car that could be driven, maybe with a/c. Jim

Occasionally, a "quitter" checks in due to a medical wake-up call.
Some have stored this life-saving equipment away for years while it could had been helping them maintain their health.
We wish them well for the long run, but sticking with this can require some determination.
Some of us have immediate, consistent, and very positive results--providing us with motivating feedback.
Others have more subtle results, but soldier on nonetheless, knowing it is all good, even though it doesn't always seem that way.

I for one, cannot wait to get back to it. Im just waiting for the insurance to approve the CPAP machine. I cannot wait to wake up feeling rested again. I had given up due to non compliance with the mask. No matter what I just couldn't keep it on. Look at my avatar.. that is what was going through my head. Now.. I know for a fact that I will feel much better, and I tell myself that every single day. I couldn't face it if I couldn't get another machine. Im way more irritable since I don't, and haven't felt rested for years. My follow up with the sleep doctor indicated that I was stopping breathing 20 times per hour, with an average of 30 seconds per event. That was enough to keep me from going into REM sleep. The night of my sleep study I went into REM sleep and hadn't felt that good in years. I don't even know how many hours I was down, but believe you me, you should use it. I fell asleep the other day just sitting down at my desk after getting home early from work. I wake up with excruciating headaches and feeling so tired you wouldn't believe it. The noises from my coworkers are also driving me to the point of insanity because my tolerance level and level of sleepiness are an inverse proportion of each other. But its also a joy to hear my coworkers clear their collective throats, sniffle, and make gross noises over a thousands times per day. But, I digress. Point is.. use a machine. I want one right now.. and I can't have it just yet. hopefully in the next few days…

Goofproof wrote:

star444 wrote:

justasking wrote:I would like to hear from those diagnosed with OSA and will not use CPAP (or use it infrequently). Why did you submit to a Sleep Study and decided to simply live with your symptoms (Excessive Daytime Sleepiness, Cognitive Impairment, etc).

I was first diagnosed with OSA about 6 years ago. The pressure on the CPAP machine was set to 13 with no exhale relief. I would wake up over and over because my cheeks would fill with air until finally the air was forced out between my lips. I talked to my doctor about prescribing a different machine that would give some exhale relief, but he just kept telling me I simply needed to try harder. (That doctor owned the Sleep Study Center as well as the DME. I think his focus was more on his profit-margin than on my well-being!)

The Sleep Doctor I'm using this time is great. We had a lengthy discussion about my previous problems and concerns and he assured me that he would make sure I got a machine with exhale relief. This time around I have been 100% compliant since Day 1.

Doctor 2 is better than 1, but if he had really wanted to help he would have got you a machine that records full data that could be read with software. Then you could see how your treatment is really doing.

If you're doctors were selling cars, dr 1 would have sold you one without brakes and a steering wheel, dr2 would have sold you one with brakes, but no steering wheel, the good dr3, would have got you a car that could be driven, maybe with a/c. Jim

I have a follow-up appointment with my doctor next Monday and I do plan to discuss the "brick" that I received. I've sort of assumed the blame for the brick belongs on the DME. The doctor wrote a prescription for a "CPAP with humidifier set to 10cm with Cflex 3". The DME chose to dispense the absolute cheapest, bottom-of-the-line unit.

chunkyfrog wrote:Occasionally, a "quitter" checks in due to a medical wake-up call.
Some have stored this life-saving equipment away for years while it could had been helping them maintain their health.
We wish them well for the long run, but sticking with this can require some determination.
Some of us have immediate, consistent, and very positive results--providing us with motivating feedback.
Others have more subtle results, but soldier on nonetheless, knowing it is all good, even though it doesn't always seem that way.

Chunkyfrog, as I have previously mentioned, you are one of my favorite posters. But I really wish you wouldn't use the term "quitter" as in my opinion, that unintentionally comes across as very harsh when you don't know the whole story.

How do you know they didn't store the equipment due to having trouble sleeping on the machine? Kind of hard to be determined when you don't get more than 1.5 to 2 hours of sleep on it on a constant basis. I know what I am talking about.

Fortunately, now that I am trying an SL sleep weaver cloth mask instead of the "evil" full face masks, things have gotten slightly better. Amazing how just an hour more sleep is motivating. Unfortunately, I now have another medical problem that is interfering with my success that I have to address.

And thanks to Obamacare, I will be seeing an ENT to see if nasal obstruction issues are a also factor to my lack of success.

My point is there could be a million reasons why someone might have put the machine in the closet and instead of calling them a quitter, why not welcome them to the forum by stressing how we want to help them get it out of there. Just seems more positive to me.

49er

How would you like to describe the "quitter" who may have temporarily given up on using CPAP? To me the use of the quotation marks indicates that the word is used because there is no other word that suitably describes them. There are many different motivations for failure to use an XPAP machine, but most of them probably could be overcome with appropriate guidance, counseling, temporary use of sleep aids, etc. Not to mention TLC from the DME/sleep doc team to make sure that the therapy is as optimized as possible.

SleepyToo2 wrote:How would you like to describe the "quitter" who may have temporarily given up on using CPAP? To me the use of the quotation marks indicates that the word is used because there is no other word that suitably describes them. There are many different motivations for failure to use an XPAP machine, but most of them probably could be overcome with appropriate guidance, counseling, temporary use of sleep aids, etc. Not to mention TLC from the DME/sleep doc team to make sure that the therapy is as optimized as possible.

SleepyToo2,

I don't know what alternative term I would use. But I do know if I was struggling big time with pap therapy as a newbie and had given up temporarily and saw myself referred in that manner on this site, I would run as fast as possible away from here.

People are already struggling big time since they have "failed". Why should they add to their misery hearing that term?

49er

"Cpap challenged"? "Struggler" or "struggling with cpap"? "In difficulties with cpap"? "Looking for cpap solutions"? Of course, the last one assumes that they are still looking. Sometimes, the tough-love "quitter" may be entirely appropriate for those who try for one night and say "I can't do this!"