Why do we abandon ship?

SleepingUgly · Post by **SleepingUgly** » Wed Dec 05, 2012 9:34 pm

Research indicates that those who have less daytime symptoms are at greater risk of noncompliance. And I can certainly see why that is.

If I had no daytime symptoms, I would abandon this in a heartbeat. I haven't seen any literature to suggest I'm at risk for anything given my >90% SaO2 off CPAP, so my sole reason in doing this is to improve my quality of life. If I had no problems with daytime functioning, I would not do this. (Course if I had no daytime functioning problems, I wouldn't have come to anyone's attention as needing CPAP, either...)

Todzo · Post by **Todzo** » Wed Dec 05, 2012 9:44 pm

SleepingUgly wrote:Research indicates that those who have less daytime symptoms are at greater risk of noncompliance. And I can certainly see why that is.

If I had no daytime symptoms, I would abandon this in a heartbeat. I haven't seen any literature to suggest I'm at risk for anything given my >90% SaO2 off CPAP, so my sole reason in doing this is to improve my quality of life. If I had no problems with daytime functioning, I would not do this. (Course if I had no daytime functioning problems, I wouldn't have come to anyone's attention as needing CPAP, either...)

Hi SleepingUgly!

I would love a citation on that research - please.

I went from 15 to 8 cm/H2O in about a year! Perhaps there are those who only need PAP for a short time and are fine.

Have a great week!

Todzo

Goofproof · Post by **Goofproof** » Wed Dec 05, 2012 9:54 pm

Todzo wrote:
SleepingUgly wrote:Research indicates that those who have less daytime symptoms are at greater risk of noncompliance. And I can certainly see why that is.

If I had no daytime symptoms, I would abandon this in a heartbeat. I haven't seen any literature to suggest I'm at risk for anything given my >90% SaO2 off CPAP, so my sole reason in doing this is to improve my quality of life. If I had no problems with daytime functioning, I would not do this. (Course if I had no daytime functioning problems, I wouldn't have come to anyone's attention as needing CPAP, either...)
Hi SleepingUgly!

I would love a citation on that research - please.

I went from 15 to 8 cm/H2O in about a year! Perhaps there are those who only need PAP for a short time and are fine.

Have a great week!

Todzo

If that is correct it's because your pressure was wrong then or now, or your treatment was wrong, like mouthleaking or other leaks. Jim

Todzo · Post by **Todzo** » Wed Dec 05, 2012 10:10 pm

Goofproof wrote:
Todzo wrote:
SleepingUgly wrote:Research indicates that those who have less daytime symptoms are at greater risk of noncompliance. And I can certainly see why that is.

If I had no daytime symptoms, I would abandon this in a heartbeat. I haven't seen any literature to suggest I'm at risk for anything given my >90% SaO2 off CPAP, so my sole reason in doing this is to improve my quality of life. If I had no problems with daytime functioning, I would not do this. (Course if I had no daytime functioning problems, I wouldn't have come to anyone's attention as needing CPAP, either...)
Hi SleepingUgly!

I would love a citation on that research - please.

I went from 15 to 8 cm/H2O in about a year! Perhaps there are those who only need PAP for a short time and are fine.

Have a great week!

Todzo
If that is correct it's because your pressure was wrong then or now, or your treatment was wrong, like mouthleaking or other leaks. Jim

Hi Jim!

My pressure was raised a bit over a year ago from 14 to 15 cm/H2O. My AHI dropped.

Since then I have done eucapnic breathing retraining, moved to a very much less stress city, enjoyed climbing a lot of hills, enjoyed more sun, dropped several inches from my belt - and my data was clear about it - I needed a pressure reduction.

Have a great week!

Todzo

morrigan · Post by **morrigan** » Wed Dec 05, 2012 11:23 pm

I stick with my cpap (over 2 years now) because if I dont wear it, then I get migraines. The constant migraines were the reason that I was diagnosed in the first place and I dont want to go back there. So, even though I hate this blasted machine and despair of ever finding a good sleep doc, I dutifully put it on every night. Its not about willpower for me, it is just plain old fear of an impending migraine!

This forum has been invaluable in that it helped me realize that "I" am in charge of my health and my treatment and there are other people out there with the same problems and fears that support each other. So, thank you to everyone who has ever posted and shared their stories. I have learned so much from all of you.

Todzo · Post by **Todzo** » Thu Dec 06, 2012 2:46 am

MidnightOwl wrote:
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?

1. http://doctorstevenpark.com/expert-inte ... -adherence 12 minutes and 38 seconds into the MP3

Todzo · Post by **Todzo** » Thu Dec 06, 2012 3:33 am

morrigan wrote:I stick with my cpap (over 2 years now) because if I dont wear it, then I get migraines. The constant migraines were the reason that I was diagnosed in the first place and I dont want to go back there. So, even though I hate this blasted machine and despair of ever finding a good sleep doc, I dutifully put it on every night. Its not about willpower for me, it is just plain old fear of an impending migraine!

This forum has been invaluable in that it helped me realize that "I" am in charge of my health and my treatment and there are other people out there with the same problems and fears that support each other. So, thank you to everyone who has ever posted and shared their stories. I have learned so much from all of you.

Hi morrigan!

I am very glad to hear that CPAP takes your migraines away!!!!

My whole purpose for starting this thread was to try to find out why people abandon, or at least consider abandoning the good ship PAP.

I believe that 80% of the people can use PAP 100% of the time. I know, I know - the current research says otherwise. To move between what I believe is possible and our current reality I think we need to look the real reasons people have problems with PAP right in the eye.

You have well presented motivation, in particular regard to a successful treatment of one of your symptoms, as your reason for staying with PAP. Thank you. That is good information. That is helpful.

What I hope to find here are the reasons that you "hate this blasted machine" and "despair of ever finding a good sleep doc" for therein is likely to be what may help us to move toward my 80%.

May we find good health indeed!

Todzo

zoocrewphoto · Post by **zoocrewphoto** » Thu Dec 06, 2012 4:22 am

I'm replying to a few different things I read during the thread.

Btw - after just over 2 years on XPAP, I have mostly 'OK' nights, some GREAT nights and occasionally HORRENDOUS nights where I fight with the mask all night. So I haven't just fallen into a 100% success with this - I still don't feel like bouncing out of bed in the morning, am still tired at times during the day etc. etc. however I REFUSE to give it up.

This sounds like me. A few rare awesome days, a few really bad days, and mostly okay days. I had a couple really bad days in a row this week, followed by a good day. It wasn't a truly awesome day, but it felt so much better than the previous days, that it felt like an awesome day. I had two stretches of 3.6 and 3.4 hours. I think I notice the improvement more when I have had a bad time so that I can feel the difference.

So, while I don't feel truly awesome, I have had enough really good days to keep me going after those. My sleep study was a split night study, and that first 5 hours of cpap treatment made a huge impression on me. I went in dreading cpap treatment, and came out wanting my machine right away. So much that I actually dreamt about it the next 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!

It's a factor for sure. But I don't think all the will power in the world will help if you get stuck with a brick and settings that aren't correct with no way to know that. My mom has been on cpap for 20 years. She would use it faithfully for years and then quit for awhile. And then use it again for half of each night, etc. Until about 4 months ago, she never had data. There is no way to know if her pressure was set wrong for a long time, or if her needs changed. But it wasn't high enough, so she was still having issues, so didn't feel any better compared to not using it. It sure is hard to do something that is inconvenient, uncomfortable, and doesn't seem to produce any improvement. She also had a doctor she did not like, and a DME who didn't help her find a comfortable mask.

She restarted her cpap treatment when I saw my mask, tried it on, and got one for herself. She went back to all night compliance after getting a new machine with data and a new prescription with a range that gave her full treatment.

Had I started years ago, like I should have, I don't know that I would have been successful. I know that having a newer quiet machine has helped me a lot. Having the data has helped me a lot. Yes, my prescription was pretty darned accurate, so I didn't have to troubleshoot. But I think it was helpful to actually see my data and see what the machine was doing to help me. Newer mask options have also helped me. And I really wasn't ready to get serious about it.

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.

I had a health scare too. Not as serious as having a heart attack or stroke. But my doctor was warning me that I was at high risk of a stroke due to my high blood pressure. Then I had vertigo. I went to two emergency rooms in one week. I was out of town when the vertigo hit the first time, sudden and severe. Then home a few days later when it came back and wouldn't stop, even with the medication. BOTH doctors stated it was not a stroke during their examination of me. I was 39, and I am often mistaken for being 20 something. So, it really scared me that the doctors were looking at me and my symptoms and considering stroke. I got serious about taking my medications. Then, when I learned that sleep apnea often caused high blood pressure and stroke, I decided I better confess and start treatment. I don't know if I would have been ready to start treatment if I had known a couple years ago that sleep apnea caused strokes. But since the vertigo incident and high blood pressure not going away with medication; I was ready.

I have been very fortunate that my sleep tech fit me with the prefect mask during the sleep study. It did take several weeks at home to master, but I knew that it was the right one since it had been comfortable without any leaks during the sleep study. I was also fortunate that my sleep study went well and allowed them to get an accurate titration. And I was very fortunate that my doctor always prescribes a full data machine since he wants to see the full data. So, I hit the jackpot and got some of the worst problems solved without me even knowing about them. I joined this list after I got home with my machine and mask. I was excited to start, and had all day to wait. So, I went online.

And that brings me to the last thing I was really fortunate about. Finding this forum. I think a lot of people who have quit over the years, might not have, had they found this forum. Even with a good sleep doctor, a lot of this is experimenting and adjusting things to get the right fit, find the right mask, etc. You can't really call your doctor every day, even if you have a good one. And most people don't have doctors and DMEs who have actually used cpap themselves. So, having this group of people to help with problems and give advice is huge. I really wish that all doctors and DMEs would give their patients a link to this website and encourage people to participate. All of us here, have an advantage, that many other people do not.

It could be something as simple as recommending the right mask. Or helping the person know how to adjust the mask they have to make it work. That is something physical that cannot be changed with willpower, but can be changed with knowledge. And I have seen tons of examples where new people don't even know the questions to ask or the right details to mention. Because we have all been there, we learn what to ask so that we can get the information we need to help them. For example, it is a very common problem to feel like we are suffocating. We often assume, at the beginning, that the airflow is overwhelming us. We think it is too much air, when it is usually too little air. DMEs do not understand this, so they don't help the newbie with that. I can't imagine continuing treatment if I had to start the night every night, struggling to breathe, not knowing why, or that I could change it. A lot of people probably give up for that reason.

zoocrewphoto · Post by **zoocrewphoto** » Thu Dec 06, 2012 4:28 am

Todzo wrote: What I hope to find here are the reasons that you "hate this blasted machine" and "despair of ever finding a good sleep doc" for therein is likely to be what may help us to move toward my 80%.
Todzo

I avoided it for years due to loud machine (my mom had one), nasal masks (I am a mouth breather and thought treatment was required through a nasal mask). And I mistakenly thought it was about waking up a lot. I didn't realize it was more about oxygen desats, adrenaline, etc.

Once I started, I have not considered quitting. Without it, I am at high risk of a stroke. I don't want to go there.

But, I have managed to take it off many times during the night. And swear at it many times. Mostly due to leaks. It took me a good month to get pretty good at fitting it. And then after weeks of fitting well, I will have a bad night where it just won't cooperate.

Denial Dave · Post by **Denial Dave** » Thu Dec 06, 2012 5:18 am

Even now, I still maintain that I had none of the typical symptoms of OSA. Some of that perception is because all through my childhood, my parents napped week nights and on weekends.... so needing a nap is normal to me.

Forgetting information, reduced attention span, needing high blood pressure medication, having high cholestoral etc.... was all just part part of my families medical history. Mom & Dad had it, so now I need it.

Getting 2 pills a day from a doc fixes a problem in 3-4 days

When a person with OSA is told that they have to strap on a mask to sleep. Go home, add in mask leaks, blisters on noses, exhaustion from poor sleep.

After 30, 60, 90 days - you get to the point that "This freaking thing isn't working, it's time to chuck the machine".

"Doctors are a bunch of quacks"
"I am not a tropical fish, I do not need to have an air pump connected to me!"

So why one person fails and another succeeds has nothing to do with moral fiber or insufficient will power.

Maintaining a positive attitude & getting support from friends, family & CPAP forums are what drives people to succeed.

morrigan · Post by **morrigan** » Thu Dec 06, 2012 9:42 am

Thanks for the welcome, Todzo. I am happy to update my lurker status to "poster"!

lazer · Post by **lazer** » Thu Dec 06, 2012 10:28 am

Heavylids wrote:
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!

49er · Post by **49er** » Thu Dec 06, 2012 11:06 am

Lazer,

I have alot of respect for you but to be honest, I really fail to see this humor when people's health is at stake. Sorry, maybe doing volunteer work at the Sleep Apnea Association and processing applications from people who can't afford machines has greatly brought this all home. And if they need a bipap machine, they will be waiting a long time for it.

We all have different opinions as to what insurance will work the best in the US. But it seems there are some people who don't give a damm that people's lives are at stake from lack of insurance and just care about their bleeping rights and want to bandy about the evil "S" word.

By the way, I don't mean to sound like I am bragging because I volunteered. What I have done is negligible compared to what many people do in the volunteer arena.

But I couldn't let this go by after that experience. Anyway, let's get back to our regularly scheduled programming.

49er

ems · Post by **ems** » Thu Dec 06, 2012 11:14 am

49er wrote:I have alot of respect for you but to be honest, I really fail to see this humor when people's health is at stake.

+++++++1

lazer · Post by **lazer** » Thu Dec 06, 2012 12:16 pm

Ok, my bad. I won't do an AVI and [delete] my post. I don't believe in that kind of censorship so I'll stand to be the ass on this one and let everyone see.

/Carry on with serious topic.