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CPAP Not Quick FIx
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?
Views: 310
Replies to This Discussion
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Permalink Reply by Michael F. O'Brien on
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Carl, do you have a CPAP that starts up with only a little pressure and builds up to the max set for your condition. I am; a fourteen. Went the technician had me try it on at the outlet it almost blew me away and I knew that I couldn't tolerate that. Right then and there he changed to the gradual pressure buildup and I have been fine with it since the first time I used it at home. I know that units are different. Check with you Dr. and the provider of the unit. When I wake up in the morning I forget that I have it on.
Carl said: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!!!
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Permalink Reply by Carl on
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I have absolutely nothing right now. I have done 2 sleep studies, and the last one they determined that even with BiPAP at levels around 22/18, I was still having Central Apnea. The analysis was that there was virtually no change at pressures above 11 or so, hence the call for the ASV, which is the next test I'm scheduled for.
I know that most CPAP and BiPAP machines have a ramp so the pressure builds up slowly. Even so, I found myself waking up a great deal due to the pressure they ran the machine at. The problem is that it does not detect when you wake up a little bit and when I did, the machine gagged me - like I said, the pressure was just way too high. I completed the study with 5:45 of testing done - they wanted 6 hours, but I was so awake that I knew I had to go home and get some real sleep. I went home, slept for 90 minute and felt so much better than I did after CPAP.
I'm really hoping the ASV works as advertised. I'll let you know.
Michael F. O'Brien said:Carl, do you have a CPAP that starts up with only a little pressure and builds up to the max set for your condition. I am; a fourteen. Went the technician had me try it on at the outlet it almost blew me away and I knew that I couldn't tolerate that. Right then and there he changed to the gradual pressure buildup and I have been fine with it since the first time I used it at home. I know that units are different. Check with you Dr. and the provider of the unit. When I wake up in the morning I forget that I have it on.
Carl said: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!!!
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Permalink Reply by Susan M. Nelling on
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For me CPAP was the quick fix, I have loved it from the first night ! 9th month and glad to be alive every morning . My pain has been so much better, chronic fatige and fibromyalgia much better.
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Permalink Reply by RockRpsgt on
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You say you believe in the long term in one sentence, and talk of CPAP taking to long in another. Is that not a bit contradictive.
You can lead a horse to water.........................................................................................
Carl said: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 :^)
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Danny I understand that 7 months may have seemed like a long time. How long do you think that your sleep was bad? 10, 20, 30 years? Some people have to go 12+ months on PAp therapy before they begin to feel results. I wish you luck with your new study. The best results that I have seen have been with an oral device PAP combination. Not so sure about the auto-titration. Post your data as you go. We will help you.
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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Permalink Reply by Mary Z on
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Tim, I understand that all of these people are not unmotivated. Some are on pressures as high as 25 and at that pressure it's nearly impossible to find a mask that does not blow out the seal. You can be as determined as you want, but if your DME (a good one) cannot find a mask that works at high pressure for you, CPAP will not work.
Mary Z.
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.
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Also, no matter what any numbers say, given a little bit of patience, if you're not feeling better something is wrong.
It certainly doesn't mean you haven't been trying hard enough (unless you haven't). I know it's tough looking for solutions.
Good Luck,
Mary Z.
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Absolutely not. You should RE-READ what i said. It's not a question of CPAP "taking too long" - it's a problem that the user has to "become compliant with CPAP". Like I said before, I believe in the LONG TERM, something better (i.e. NOT CPAP - a machine that takes weeks or months to learn to live with, and in many instances still not comfortable with) will come along. If you see a contradiction in that, well, then, I'm sorry - I sure don't.
You should read some studies on HMI (human machine interaction). Technology is adopted best when the human interaction works well and feels natural. Telling someone that they have to put on a mask (luckily some people's mask only covers their nose), often ofter their nose & mouth, and have air continuously blown at them so that the work of exhaling becomes harder and harder - well - that is just counterintuitive as far as I'm concerned. I know it gets results and that is ultimately what they're after, but, how many people are being left behind because they just can't tolerate their prescribed therapy. And trust me - it's not that I'm not motivated (Tim seems to think because people give up on something that they're not motivated - which is just wrong, wrong, wrong).
Have you read anything about ASV? While I haven't experienced it (yet), it does sound like it fits the "human model" a lot better by determining your natural breathing rate and going from there. Only when an apnea episode is detected does it really kick into full swing. From doing a bit more reading - that "Bipap ST" is just one manufacturer's machine, for a machine that actually does ASV (which is the generic term - adaptive servo ventillation). Like i said before - I'm scheduled for THAT test on April 15th.
Did you also read the other item I posted that (ResMed) even said that BiPap machines (and I'm sure CPAP as well) may be actually causing additional Central Apneas. This was very shocking to me and should be shocking to others out there as well.
Rock Hinkle said:You say you believe in the long term in one sentence, and talk of CPAP taking to long in another. Is that not a bit contradictive.
You can lead a horse to water.........................................................................................
Carl said: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 :^)
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Permalink Reply by M'Lady Wench on
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Interesting question...I know for me, there was a small amount of instant gratification, but it was in the long term that I truly felt the benefits. My partner has had a cpap for years so I knew some of what I was going to be doing once I got my machine. I was lucky that my DME was awesome and fit me perfectly. I sent my partner in to get a new machine a few months after I received mine. He had a bit of trouble as his old machine was very loud. I accepted my needing a cpap just as I had my partner needing his. *shrugs* I guess I just figured if I was to keep up with my kids and animals, I needed to do this for me. To each their own and may they do what is right for them. Thanks for the great question and take care!
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Permalink Reply by Tim on
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Michael F. O'Brien: To the best of my knowledge, all normal CPAPs sold in the US in the past 15 or so years have a ramp feature.
Mary; People who have pressures over 20 are are few and far between, and they are not using standard CPAPs. It appears to me that most people, whether compliant or not. are using CPAPs set at about 10 to 12 cmh2o.
There are a great many people, some of whom are at higher pressures, who are compliant with CPAP. I cannot believe that all of these people found CPAP usage to be so easy that it didn't require determination and perseverance for them to become compliant. When I first started using CPAP, I had no idea how I was going to be able to get used to that blast of air hitting my face; but I knew that I had to get used to it Not getting used to CPAP was not an option for me.
I agree that CPAP is not easy to get used to, and I believe that an effective alternative to CPAP would be very desirable. I have no idea how long it will be before an effective alternative to CPAP is found; it doesn't seem that there is anything on the visible horizon. I know that there are a few potential devices out there, such as the nasal valve, electrical muscle stimulation, and the constant air volume system; none of these look very promising to me.
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Yes it is possible for normal Bpap to increase CSA. I am well aware of it. You do understand that ASV and AVAP are just another type of Bpap right? Bpap ST just adds breathing support to your therapy. Which is what ASV is going to do just on a more advanced level. I was just questioning whether all options had been tried in your case. Bpap ST is just a cheaper alternative to ASV that is all. It is also possible that no matter what therapy you are on that your centrals will get worse. My suggestion for you is that you find a way to embrace your therapy as you are out of options after this. Noncompliance on your part would be a tragedy for your family.
I will check out those studies on HMI though. Thanks for that.
Carl said:Absolutely not. You should RE-READ what i said. It's not a question of CPAP "taking too long" - it's a problem that the user has to "become compliant with CPAP". Like I said before, I believe in the LONG TERM, something better (i.e. NOT CPAP - a machine that takes weeks or months to learn to live with, and in many instances still not comfortable with) will come along. If you see a contradiction in that, well, then, I'm sorry - I sure don't.
You should read some studies on HMI (human machine interaction). Technology is adopted best when the human interaction works well and feels natural. Telling someone that they have to put on a mask (luckily some people's mask only covers their nose), often ofter their nose & mouth, and have air continuously blown at them so that the work of exhaling becomes harder and harder - well - that is just counterintuitive as far as I'm concerned. I know it gets results and that is ultimately what they're after, but, how many people are being left behind because they just can't tolerate their prescribed therapy. And trust me - it's not that I'm not motivated (Tim seems to think because people give up on something that they're not motivated - which is just wrong, wrong, wrong).
Have you read anything about ASV? While I haven't experienced it (yet), it does sound like it fits the "human model" a lot better by determining your natural breathing rate and going from there. Only when an apnea episode is detected does it really kick into full swing. From doing a bit more reading - that "Bipap ST" is just one manufacturer's machine, for a machine that actually does ASV (which is the generic term - adaptive servo ventillation). Like i said before - I'm scheduled for THAT test on April 15th.
Did you also read the other item I posted that (ResMed) even said that BiPap machines (and I'm sure CPAP as well) may be actually causing additional Central Apneas. This was very shocking to me and should be shocking to others out there as well.
Rock Hinkle said:You say you believe in the long term in one sentence, and talk of CPAP taking to long in another. Is that not a bit contradictive.
You can lead a horse to water.........................................................................................
Carl said: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 :^)
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