Why do we abandon ship?

BlackSpinner wrote:

Heavylids wrote:

ChicagoGranny wrote:

that only twenty percent of those commended to PAP are using those machines for more than four hours a night at one year.

Re: Why do we abandon ship?

Why does a third of the population continue smoking, eat a high carb/high sugar diet, sit on the sofa watching TV and fiddling with electronics, never go outside, blah, blah, blah ...

Because pepole are becoming unmotivated and lazy and ripe for socialism. People want everything to be done for them. So, if therapy involves more than walking into a Doctor's office for a shot or taking a pill, most people won't stick with it. I believe the stats. We all come to this forum and stay here because we are the 1% ers who want to live life to it's full potential and not die in our sleep from "complications resulting from untreated sleep apnea". I've seen that line in the newspapers so many times over the last year it makes me ill.

So, I have no ear for listening to the constant whining of those looking for justification to quit cpap....the mask hurts...the pillows hurt my nose...it's just to uncomfy and messes up my hair so I quit...I can't go on...I can't accept this. Yea, well go somewhere else with that noise.

Total bullshit. Nothing to do with socialism, Everything to do with the capitalistic greed. "Me me me NOW! Screw everyone else!"

Hi BlackSpinner,

I try to not "add mine" since I do want to hear others - but - I do think you see rightly that a lack of compassion is part of the why.

You, if memory serves, have been sucessful with PAP for over a year. Did you have any challenges that year? How did you overcome them?

Thanks!

Todzo

BlackSpinner wrote:

Heavylids wrote:

ChicagoGranny wrote:

that only twenty percent of those commended to PAP are using those machines for more than four hours a night at one year.

Re: Why do we abandon ship?

Why does a third of the population continue smoking, eat a high carb/high sugar diet, sit on the sofa watching TV and fiddling with electronics, never go outside, blah, blah, blah ...

Because pepole are becoming unmotivated and lazy and ripe for socialism. People want everything to be done for them. So, if therapy involves more than walking into a Doctor's office for a shot or taking a pill, most people won't stick with it. I believe the stats. We all come to this forum and stay here because we are the 1% ers who want to live life to it's full potential and not die in our sleep from "complications resulting from untreated sleep apnea". I've seen that line in the newspapers so many times over the last year it makes me ill.

So, I have no ear for listening to the constant whining of those looking for justification to quit cpap....the mask hurts...the pillows hurt my nose...it's just to uncomfy and messes up my hair so I quit...I can't go on...I can't accept this. Yea, well go somewhere else with that noise.

Total bullshit. Nothing to do with socialism, Everything to do with the capitalistic greed. "Me me me NOW! Screw everyone else!"

LOL. Want to piss off a liberal? Tell the truth.

Oops.... Off topic!

Very timely thread. I took to CPAP (July 2011) fairly easily and then to VPAP (December 2011). Didn't have a problem switching to VPAP, which my doctor said might help with severe morning headaches. Got much needed support from Pugsy and a few others and used the machine every nite for at least 7 hours. My data was fine... I started to feel a little more awake during the day, but headaches didn't improve.

I tried a few different masks but always went back to the original which was the Swift FX, and then tried the Bella Loops with the Swift instead of the original headgear. I liked the Bella Loops a lot. Fast forward to around six months ago. Out of nowhere, nothing was comfortable and leaks were constantly waking me. I tried everything I've seen written here... new pillows, new mask, new bed pillow, etc. etc. To make this short, I do toss around abandoning ship. I'm fortunate because I don't have additional health issues and keep thinking that maybe I'm overdoing this sleep apnea thing and I should just stop struggling with it and give up. I only sleep on my side and think maybe that is enough. I do keep trying though because of everything I read here and because my oxygen level dropped to 85% during my sleep study. Some nites are okay and some nites I pull the thing off after a few hours. Then I put it back on. Then I take it off. Some nites I put it on and take it off five minutes later. Obviously, this doesn't make for restorative sleep. I have no idea what this is all about. I think part of the problem is that I don't feel much different on or off the machine. My headaches are the same whether I use the machine or not. Bottom line... I see very little improvement, altho my data looks good when I check Sleepyhead.

I'm afraid to stop using the machine but I sure do want to and it's a constant fight.

Heavylids -- you just had to do it

Todzo wrote:

MidnightOwl wrote:

Todzo wrote:I recently found out (well – accepted is probably more what happened here – the facts were there I simply did not want to see them) that only twenty percent of those commended to PAP are using those machines for more than four hours a night at one year.

I

How old are these statistics and how did they get them? Does anybody know offhand? It would be funny if we've been repeating endlessly statistics based on five people 20 years ago. I know nobody official has any clue what my usage was after the first 3 months. And the only "official" context I've seen those numbers in is from professionals arguing they should get to charge more money for more follow up services.

reported by a medical research specialist about 4 months ago

Link or citation?

Everytime this topic comes up I'm bothered by the posts that insist it's all about willpower. I don't believe that's true at all. You do have to make a decision to try cpap but after that I think that biology plays a huge role in who is successful and who isn't. I think some of us just adapt much more easily than others. And even if you had trouble adapting how can you possibly know that someone else is feeling it the same way you do?

I was lucky. I had no problem adapting to cpap from the very beginning. I do not think this makes me morally superior to anyone else. I suspect it means that my sensory neurons habituate very quickly to the feel of the mask and stop signaling my brain that something is on my face. That's not willpower. Neither is sleeping deeply enough that I'm not easily aroused from sleep. I think that the nerves and brains of people who don't adjust are just wired a bit differently.

I can't prove that but I did have one night in all these years where the mask and air felt like there were spiders crawling all over my face and while I tried to tough it out for over an hour that feeling never went away. There was no way I could will myself to sleep and I eventually gave up. I still have no clue about what caused that one night in years to be different. But whenever I'm tempted to feel superior because I always use the cpap I remember that night.

edited to correct unfortunate typing error.

MidnightOwl wrote:Everytime this topic comes up I'm bothered by the posts that insist it's all about willpower. I don't believe that's true at all. You do have to make a decision to try cpap but after that I think that biology plays a huge role in who is successful and who isn't. I think some of us just adapt much more easily than others. And even if you had trouble adapting how can you possibly know that someone else is feeling it the same way you do?

I was lucky. I had no problem adapting to cpap from the very beginning. I do think this makes me morally superior to anyone else. I suspect it means that my sensory neurons habituate very quickly to the feel of the mask and stop signaling my brain that something is on my face. That's not willpower. Neither is sleeping deeply enough that I'm not easily aroused from sleep. I think that the nerves and brains of people who don't adjust are just wired a bit differently.

I can't prove that but I did have one night in all these years where the mask and air felt like there were spiders crawling all over my face and while I tried to tough it out for over an hour that feeling never went away. There was no way I could will myself to sleep and I eventually gave up. I still have no clue about what caused that one night in years to be different. But whenever I'm tempted to feel superior because I always use the cpap I remember that night.

Oh my gosh, it's absolutely refreshing to hear someone who has been super successful with CPAP recognize and say out loud that it may not all be about willpower and strength of character. Thank you Owl!

kaiasgram wrote:

MidnightOwl wrote:Everytime this topic comes up I'm bothered by the posts that insist it's all about willpower. I don't believe that's true at all. You do have to make a decision to try cpap but after that I think that biology plays a huge role in who is successful and who isn't. I think some of us just adapt much more easily than others. And even if you had trouble adapting how can you possibly know that someone else is feeling it the same way you do?

I was lucky. I had no problem adapting to cpap from the very beginning. I do think this makes me morally superior to anyone else. I suspect it means that my sensory neurons habituate very quickly to the feel of the mask and stop signaling my brain that something is on my face. That's not willpower. Neither is sleeping deeply enough that I'm not easily aroused from sleep. I think that the nerves and brains of people who don't adjust are just wired a bit differently.

I can't prove that but I did have one night in all these years where the mask and air felt like there were spiders crawling all over my face and while I tried to tough it out for over an hour that feeling never went away. There was no way I could will myself to sleep and I eventually gave up. I still have no clue about what caused that one night in years to be different. But whenever I'm tempted to feel superior because I always use the cpap I remember that night.

Oh my gosh, it's absolutely refreshing to hear someone who has been super successful with CPAP recognize and say out loud that it may not all be about willpower and strong character. Thank you Owl!

Thank you both. Many of us thank you!

Very insightful. Biology explains a great deal; and now for another factor:
I read something awhile back about successful lifestyle changes (they were speaking of lasting weight loss)
and its link to significant health events--like having a heart attack or a serious health crisis, shocking enough
that the response carries through into action; and is SUSTAINED.
Not everyone is impressed by the OSA diagnosis equally; not everyone feels consistent, early improvement
after starting therapy. Not everyone feels motivated after a setback. Too many take the attitude,
"yeah, it's serious, and I'm screwed." Optimism is key. Some are born with it; where can the others get some?

ems wrote:Very timely thread. I took to CPAP (July 2011) fairly easily and then to VPAP (December 2011). Didn't have a problem switching to VPAP, which my doctor said might help with severe morning headaches. Got much needed support from Pugsy and a few others and used the machine every nite for at least 7 hours. My data was fine... I started to feel a little more awake during the day, but headaches didn't improve.

I tried a few different masks but always went back to the original which was the Swift FX, and then tried the Bella Loops with the Swift instead of the original headgear. I liked the Bella Loops a lot. Fast forward to around six months ago. Out of nowhere, nothing was comfortable and leaks were constantly waking me. I tried everything I've seen written here... new pillows, new mask, new bed pillow, etc. etc. To make this short, I do toss around abandoning ship. I'm fortunate because I don't have additional health issues and keep thinking that maybe I'm overdoing this sleep apnea thing and I should just stop struggling with it and give up. I only sleep on my side and think maybe that is enough. I do keep trying though because of everything I read here and because my oxygen level dropped to 85% during my sleep study. Some nites are okay and some nites I pull the thing off after a few hours. Then I put it back on. Then I take it off. Some nites I put it on and take it off five minutes later. Obviously, this doesn't make for restorative sleep. I have no idea what this is all about. I think part of the problem is that I don't feel much different on or off the machine. My headaches are the same whether I use the machine or not. Bottom line... I see very little improvement, altho my data looks good when I check Sleepyhead.

I'm afraid to stop using the machine but I sure do want to and it's a constant fight.

check minute volumes on nights of bad days compaired to nights of good days. Look at the average - 95% - max ... Look at the variability of the flow wave form (thickness, in general, is related to breathing volumes) - and at closeups of "just before the flagged events" and after the flagged events or awakenings. --- I would love to know what you see. ----- Thanks!!!! Todzo - oh - and go get one of those newfangled ASV class PAPs

Todzo wrote:check minute volumes on nights of bad days compaired to nights of good days. Look at the average - 95% - max ... Look at the variability of the flow wave form (thickness, in general, is related to breathing volumes) - and at closeups of "just before the flagged events" and after the flagged events or awakenings. --- I would love to know what you see. ----- Thanks!!!! Todzo - oh - and go get one of those newfangled ASV class PAPs

Todzo... I check AHI/leaks and quickly scan everything else. To be honest, I don't check minute volume/flow stuff. I see my sleep specialist in January and fortunately she does check all that. Last time I saw her was in May and was before I started having these issues. Thanks.

MidnightOwl wrote:Everytime this topic comes up I'm bothered by the posts that insist it's all about willpower. I don't believe that's true at all. You do have to make a decision to try cpap but after that I think that biology plays a huge role in who is successful and who isn't. I think some of us just adapt much more easily than others. And even if you had trouble adapting how can you possibly know that someone else is feeling it the same way you do?

I was lucky. I had no problem adapting to cpap from the very beginning. I do think this makes me morally superior to anyone else. I suspect it means that my sensory neurons habituate very quickly to the feel of the mask and stop signaling my brain that something is on my face. That's not willpower. Neither is sleeping deeply enough that I'm not easily aroused from sleep. I think that the nerves and brains of people who don't adjust are just wired a bit differently.

I can't prove that but I did have one night in all these years where the mask and air felt like there were spiders crawling all over my face and while I tried to tough it out for over an hour that feeling never went away. There was no way I could will myself to sleep and I eventually gave up. I still have no clue about what caused that one night in years to be different. But whenever I'm tempted to feel superior because I always use the cpap I remember that night.

I also thank you Owl for recognizing it isn't about willpower.

49er

kaiasgram wrote:

Oh my gosh, it's absolutely refreshing to hear someone who has been super successful with CPAP recognize and say out loud that it may not all be about willpower and strength of character. Thank you Owl![/quote]

It is not will power, it is about choice and acceptance and belief.
Willpower will get you back on the horse but it won't let you actually ride it because that bloody horse KNOWS you don't really want to be there. In order to really ride that horse (rather then just sit on it) you need to change your attitude, change your thinking, change your point of view, change your believe system. It means being aware of your thoughts and motivations. It is the same with any other therapy. Will power will get you in the door but after that it is work.

I have been on cpap since April 2009. However I had lots of other health issues before that and I learned a lot of various kinds of pain relief and relaxations skills to deal with them. I chose to accept cpap therapy. I told myself it would make a difference in my life. During the second week I started waking up thinking I couldn't breathe with my mask on, I dealt with it by lifting the mask and telling myself I could breathe because I could feel the air moving. The problem was gone in a week. I knew what was going on because I knew my mind. Six months later I changed to a Hybrid mask, same issue, same solution.

BlackSpinner wrote: It is not will power, it is about choice and acceptance and belief.

...

I have been on cpap since April 2009. However I had lots of other health issues before that and I learned a lot of various kinds of pain relief and relaxations skills to deal with them. I chose to accept cpap therapy. I told myself it would make a difference in my life. During the second week I started waking up thinking I couldn't breathe with my mask on, I dealt with it by lifting the mask and telling myself I could breathe because I could feel the air moving. The problem was gone in a week. I knew what was going on because I knew my mind. Six months later I changed to a Hybrid mask, same issue, same solution.

I think that's good advice that can be helpful to many people. But I don't think you can assume that everyone's problems with cpap were like yours or that the same approach will be helpful. I don't think it matters whether you call it willpower or attitude or anything else. It's not the only thing that matters. Not everyone is wired the same.

MidnightOwl wrote:

BlackSpinner wrote: It is not will power, it is about choice and acceptance and belief.

...

I have been on cpap since April 2009. However I had lots of other health issues before that and I learned a lot of various kinds of pain relief and relaxations skills to deal with them. I chose to accept cpap therapy. I told myself it would make a difference in my life. During the second week I started waking up thinking I couldn't breathe with my mask on, I dealt with it by lifting the mask and telling myself I could breathe because I could feel the air moving. The problem was gone in a week. I knew what was going on because I knew my mind. Six months later I changed to a Hybrid mask, same issue, same solution.

I think that's good advice that can be helpful to many people. But I don't think you can assume that everyone's problems with cpap were like yours or that the same approach will be helpful. I don't think it matters whether you call it willpower or attitude or anything else. It's not the only thing that matters. Not everyone is wired the same.

Hi MidnightOwl!

I think you make a good point about the willpower and additude issues. Indeed I think the emphesis toward the use of willpower and attitude is distracting many from listening to what thier bodies are telling them that they need to hear if they wish to remain healthy.

I think BlackSpinner sets a good example for us in dealing with her own fear and stress. I think a lot of this has to do with stress and forgotten physiology.

Have a great week!

Todzo