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Steven B. Ronsen updated their profile
Sep 15
We who are CPAP users all know that it's not a quick fix.. it takes time, patience and most of all, education to figure out how to get well using it.   

That said, we live in an age of instant gratification.  Of high speed internet access, accustomed to getting our problems solved immediately.  

Do we as a culture really have an appetite for CPAP?  Or for Sleep Apnea to really gain the awareness it deserves, do we need a more "quick fix" treatment modality?

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The only 100% cure for apnea is a trach. Short of replacing the airway this will be the only 100% cure for a very long time. In my opinion anyway. One of the causes of sleep apnea that does nto get much attention is the natural loss of muscle tone, or sleep paralysis that occurs while we sleep. You can trim away tissue, advance the jaw, and even clean out the sinus cavities. None of these things will change the physiological characteristics of your sleep. If they did it would probably be for the worse. You were most likely born with apnea. Most of us will die with apnea. I would suggest that you find the best possible treatment for you, and learn to live with it. Who wants to live to be a 150 anyway?

In my opinion "the quick fix" always ends up costing me more in the long run. This is why I have chose to take the long walk to the finish line.

Brad said:
I think the quick fix is elusive because of a lack of research. Doctors could certainly refine the surgical techniques (perhaps something less invasive, such as laser surgery) with enough time and interest. And, yes, I know--laser surgery is already out there, and yes, it doesn't work well. But that's one of the advantages of research. It's sometimes almost miraculous what kinds of treatments are developed, if anyone, ANYONE, chooses to look. With more research dollars, I firmly believe that OSA could be completely curable, but no one is interested in funding such research.

Think about it: OSA is a PLUMBING problem as much as anything else. It's not mysterious like bipolar disorder or cancer. It's just the air hoses screwing up. Surely there's a quick, reasonable, affordable fix somewhere in the future.
CPAP in some ways was a quick fix. I felt so much better so quickly. It just isn't a perfect fix. Many nights are restful and some nights I feel sensitive and wake up a lot adjusting my mask. Sorta like the rest of the population....no one has great sleep all the time that i know of.
CPAP - I have tried it and I absolutely hated it. In now way could I get used to having a continuous pressure blowing into my mouth & nose.

Bi-PAP - They ran the pressure up so high and, as it turns out - going about 10 or 11 made absolutely no difference whatsoever.

Next step - ASV - Adaptive Servo-Ventilation. It ADAPTS to your own breathing rate.

If anyone is interested, just do a google on "ASV CPAP" and check out some of the top results. It is Medicare approved (since 2006), but many sleep centers don't even offer it as an option (why? - probably because they want patients to keep coming back and doing more and more testing - have you ever seen how much they charge for ONE NIGHT??? something like $3,000 - $4,000) !!! I mean - come on guys, this is getting a bit ridiculous. No wonder health care costs have skyrocketed!!!
I am sure that some number of people who are new to CPAP have problems that are not corrected by their CPAP and some number of people have problems, such as ill fitting masks or mouth breathing, that need to be addressed. From reading posts in apnea forums, it seems that a number of people lack the motivation or determination needed to become compliant with CPAP. I have heard that something like 50% of people who are provided with CPAPs give up on them -- that is a whole lot of unmotivated people.
Listen to what you're saying?! "From reading posts in apnea forums, it seems that a number of people lack the motivation or determination needed to become compliant with CPAP." Become compliant with CPAP?! Perhaps the real problem here is that the proper solution does not really exist.

Patients should not have to become "compliant" with a machine, the medical device itself should make things EASIER to do and make our lives EASIER. Anything that takes a month or more to "get used to" - well - I'm not saying that it's not a good idea to use it, because it definitely has some health advantages, but, I believe in the LONG TERM, something better has to come along...

Hmmm... I see a new company being formed here :^)
I'm really sick of CPAP after five years, but I do appreciate the fact that it's at least partly responsible for me still BEING here to whine about it. :) I've read a number of articles about people like Reggie White who died in their sleep with an unused CPAP machine under the bed. Wonder how many deaths like this go unreported... My father died in his sleep one year ago with no clear answer why, yet he was a heavy snorer and never would get a sleep study to confirm highly likely sleep apnea. Considering three of his kids have it, it sure makes me wonder. Sadly wonder.

I've been struggling to keep the mask on all night, and sometimes I do. I know it's important, and I do prefer to provide my brain with sufficient oxygen. :) Often I wake up in the night from different kinds of mask discomfort, and it makes me angry enough that I rip the mask off my face without even remembering it. I have four different masks, I just never seem to find the right one. I wake up in the morning and find the mask on the side of my bed, with all the straps still snapped in place... anyone relate to that phenomenon? :)

One invention I'd love to see for CPAP comfort (probably already out there somewhere) would be an arm that suspends the hose above the bed, as if a person was standing there, gently holding the hose in an optimal position for you. It would help with keeping the hose from wrapping around your neck, or at least feeling like it is--and maybe help with the hose interfering with normal head movement during sleep.

Enough of my rambling. I look forward to hearing from anyone who has found better ways to adjust than I have - this forum is excellent for sharing, and I really appreciate it.

Marty
Maybe someday something better than CPAP or tracheostomy will come along, but for right now, that is about all we got.

There are medical conditions that are worse to treat than CPAP; I would much rather use CPAP than use a colostomy bag or catheters. At least now, few, if any people still use an iron lung.
How do you know that you are not getting results? If it is saving you from a heart attack and/or diabetes that is results. The only outward results is that I don't fall asleep in movie and and do not get tired driving. I have been on my CPAP for two years in a week. My Dr. asked if I was going to be committed and I have been. I didn't take my CPAP with me on a two night trip, but have only missed one other night because I was VERY sick with the flu. With my current mast I have had a two month open sore on the bridge of my nose, but I put a band aid on it most every night. When I wake up in the morning I actually forget that I have the CP on. I 70 going on 71. I know my father had apnea, but no one knew then. He had adult onset of diabetes at 73 and died of a heart attach at 77. I am motivated. My wife says that she sees a huge difference in me. A CPAP in not sexy and I can imagine that young folks with an active sex life it would be more of a burden to deal with. But all should keep in mind that SLEEP APNEA IS A KILLER.

Danny Heller said:
I disagree with your premise, Mike. It's too easy to pat yourself on the back and say "Those other people are just looking for a magic bullet." The reason people aren't "compliant" is not because they're lazy, but because they are getting poor results and they either are not getting good advice or they don't know where to turn for assistance. I tried CPAP for 7 months with absolutely no improvement whatsoever, and every time I would call the home care company they would say, "Just keep using it!" Finally I gave up in despair. Was that my fault? Am I just a lazy slob looking for "instant gratification"? Hardly! I am currently using an oral appliance, and unfortunately, I am not getting good results with that either. But at least I have an oral specialist who has stayed with me throughout the process. Now, I am planning to undergo a second CPAP (or better still, AutoPap) trial, in combination with the oral appliance. This time, I will take a much more aggressive (yes, aggressive) role with a different home care company, and hopefully, obtain better results.
It has nothing to do with "motivation". and "determination". Please refrain from putting other people down simply because they are experiencing difficulty with their various treatment modalities.

Tim said:
I am sure that some number of people who are new to CPAP have problems that are not corrected by their CPAP and some number of people have problems, such as ill fitting masks or mouth breathing, that need to be addressed. From reading posts in apnea forums, it seems that a number of people lack the motivation or determination needed to become compliant with CPAP. I have heard that something like 50% of people who are provided with CPAPs give up on them -- that is a whole lot of unmotivated people.
By the way, to those of you who have CSA as well (like me), the new ASV really seems to be a good machine. I'm re-doing my sleep study with an ASV machine on April 15th. After reading quite a bit about this machine, here's something that I find particularly interesting. This is taken directly from the ASV info by ResMed

Why ASV Instead of bilevel?

Most CSA/CSR patients have trouble tolerating conventional bilevel ventilatory support. The pressure must be djusted to a constant high level to adequately support a patient during apnea/hypopnea. This leads to over-ventilation during periods of normal breathing or hyperpnea, which causes arousals and discomfort. It can even propagate more CSA events.

That's great - so the (BiPAP) machine you're using to treat you can actually cause MORE CSA events.
Huh? What a bizarre comment! How do I know I'm not getting results? Who would know better than I, the patient being treated? If I get up after a night with CPAP and feel as if I haven't slept at all, it doesn't matter what the printout says. We seem to have a lot of people in this discussion who persist with the foolish notion that because CPAP is the "gold standard" of treatment, therefore, if we don't get results, it is somehow our fault. Why don't you stop trying to blame people who are clearly trying (or they wouldn't be participating in a support group or an online forum) to get some relief from their illness??

Michael F. O'Brien said:
How do you know that you are not getting results? If it is saving you from a heart attack and/or diabetes that is results. The only outward results is that I don't fall asleep in movie and and do not get tired driving. I have been on my CPAP for two years in a week. My Dr. asked if I was going to be committed and I have been. I didn't take my CPAP with me on a two night trip, but have only missed one other night because I was VERY sick with the flu. With my current mast I have had a two month open sore on the bridge of my nose, but I put a band aid on it most every night. When I wake up in the morning I actually forget that I have the CP on. I 70 going on 71. I know my father had apnea, but no one knew then. He had adult onset of diabetes at 73 and died of a heart attach at 77. I am motivated. My wife says that she sees a huge difference in me. A CPAP in not sexy and I can imagine that young folks with an active sex life it would be more of a burden to deal with. But all should keep in mind that SLEEP APNEA IS A KILLER.

Danny Heller said:
I disagree with your premise, Mike. It's too easy to pat yourself on the back and say "Those other people are just looking for a magic bullet." The reason people aren't "compliant" is not because they're lazy, but because they are getting poor results and they either are not getting good advice or they don't know where to turn for assistance. I tried CPAP for 7 months with absolutely no improvement whatsoever, and every time I would call the home care company they would say, "Just keep using it!" Finally I gave up in despair. Was that my fault? Am I just a lazy slob looking for "instant gratification"? Hardly! I am currently using an oral appliance, and unfortunately, I am not getting good results with that either. But at least I have an oral specialist who has stayed with me throughout the process. Now, I am planning to undergo a second CPAP (or better still, AutoPap) trial, in combination with the oral appliance. This time, I will take a much more aggressive (yes, aggressive) role with a different home care company, and hopefully, obtain better results.
I didn't mean to get you all testy. I am a fourteen and I didn't wake up all tired in the morning and I was asking an honest question. How do you know that it isn't working? I didn't know that I needed a CPAP that badly either. Like many many folks with Apnea, they/we didn't know they/we had a problem. My wife certainly did, however, but it wasn't because I was all groggy in the morning. I did, however, had to get up to pee once or twice a night and sometimes three or four, but I didn't know why. As it turns out it was because of apnea. I have only gotten up once in two years to pee and that was the night I was sick and could tolerate the CPAP. I repeat, I did not mean to offend.

Danny Heller said:
Huh? What a bizarre comment! How do I know I'm not getting results? Who would know better than I, the patient being treated? If I get up after a night with CPAP and feel as if I haven't slept at all, it doesn't matter what the printout says. We seem to have a lot of people in this discussion who persist with the foolish notion that because CPAP is the "gold standard" of treatment, therefore, if we don't get results, it is somehow our fault. Why don't you stop trying to blame people who are clearly trying (or they wouldn't be participating in a support group or an online forum) to get some relief from their illness??

Michael F. O'Brien said:
How do you know that you are not getting results? If it is saving you from a heart attack and/or diabetes that is results. The only outward results is that I don't fall asleep in movie and and do not get tired driving. I have been on my CPAP for two years in a week. My Dr. asked if I was going to be committed and I have been. I didn't take my CPAP with me on a two night trip, but have only missed one other night because I was VERY sick with the flu. With my current mast I have had a two month open sore on the bridge of my nose, but I put a band aid on it most every night. When I wake up in the morning I actually forget that I have the CP on. I 70 going on 71. I know my father had apnea, but no one knew then. He had adult onset of diabetes at 73 and died of a heart attach at 77. I am motivated. My wife says that she sees a huge difference in me. A CPAP in not sexy and I can imagine that young folks with an active sex life it would be more of a burden to deal with. But all should keep in mind that SLEEP APNEA IS A KILLER.

Danny Heller said:
I disagree with your premise, Mike. It's too easy to pat yourself on the back and say "Those other people are just looking for a magic bullet." The reason people aren't "compliant" is not because they're lazy, but because they are getting poor results and they either are not getting good advice or they don't know where to turn for assistance. I tried CPAP for 7 months with absolutely no improvement whatsoever, and every time I would call the home care company they would say, "Just keep using it!" Finally I gave up in despair. Was that my fault? Am I just a lazy slob looking for "instant gratification"? Hardly! I am currently using an oral appliance, and unfortunately, I am not getting good results with that either. But at least I have an oral specialist who has stayed with me throughout the process. Now, I am planning to undergo a second CPAP (or better still, AutoPap) trial, in combination with the oral appliance. This time, I will take a much more aggressive (yes, aggressive) role with a different home care company, and hopefully, obtain better results.

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