I myself am going the "CPAP alternative" route. Isn't CPAP compliance rate around ~50%?
For those that have sought another form of treatment, whether surgery or dental device, what was your reasoning? What were your results? Did you go back to CPAP at some point?
I wonder if the people on this board can give any thoughts as to the CPAP compliance rate being higher or lower than ~50%.
(Even though I don't check this board as much, everyone here is still so freakin helpful! Keep it up people! You get a check plus and a gold star for effort!)
How many stuck with CPAP, or sought alternatives?
How many stuck with CPAP, or sought alternatives?
Sleep: Did I ever know you?
Soccer: The beautiful game.
2006 Advertising Graduate: Any1 got a job?!
Soccer: The beautiful game.
2006 Advertising Graduate: Any1 got a job?!
-
rock and roll
- Posts: 1222
- Joined: Mon Nov 01, 2004 7:30 pm
- Location: Texas
-
rested gal
- Posts: 12881
- Joined: Thu Sep 09, 2004 10:14 pm
- Location: Tennessee
I'd bet cpap dropouts are far greater than even the 40 or 50% dropout rate that is usually cited. At least by the time a year or two has gone by.
For one thing, I doubt if many DME's really, REALLY keep track of who is using their cpap or not, especially if an insurance company is not making regular inquires about it.
So... most DMEs call a time or two at first (maybe) to see how it's going. The cpap user who never wanted to "be on a machine" in the first place and has pretty much stopped using the machine at all doesn't want to hear a lecture. Answer..."ok". That's all the DME wanted to hear. Probably won't call the person again figuring, "Hey, they had no complaints, so if we don't hear from them, they're doing ok with it from now on."
There's no telling how many people use their machines only a few hours on just a few nights; yet are counted as "compliant" because the DME doesn't hear from them, and neither doctor nor DME do any kind of meaningful regular follow-ups. The complete drop-outs, as well as the people who don't use their machine anywhere near often enough or consistently enough throughout any given night, fall under the radar. If they aren't heard from with a complaint, they probably get counted statistically on the DME's rolls as compliant, even though they really don't use their machine much, if at all. It's probably just sitting in a closet.
The idea that averaging "4" hours a night means being "compliant" is ridiculous. But thank goodness it isn't a higher bar, or many people who earnestly are trying to increase the time they can keep a ratty cheap DME-issued mask on would be having their machines yanked away before they ever had a chance to find their way to a message board. A message board that could really help them achieve effective treatment rather than just a fake "compliance".
For one thing, I doubt if many DME's really, REALLY keep track of who is using their cpap or not, especially if an insurance company is not making regular inquires about it.
So... most DMEs call a time or two at first (maybe) to see how it's going. The cpap user who never wanted to "be on a machine" in the first place and has pretty much stopped using the machine at all doesn't want to hear a lecture. Answer..."ok". That's all the DME wanted to hear. Probably won't call the person again figuring, "Hey, they had no complaints, so if we don't hear from them, they're doing ok with it from now on."
There's no telling how many people use their machines only a few hours on just a few nights; yet are counted as "compliant" because the DME doesn't hear from them, and neither doctor nor DME do any kind of meaningful regular follow-ups. The complete drop-outs, as well as the people who don't use their machine anywhere near often enough or consistently enough throughout any given night, fall under the radar. If they aren't heard from with a complaint, they probably get counted statistically on the DME's rolls as compliant, even though they really don't use their machine much, if at all. It's probably just sitting in a closet.
The idea that averaging "4" hours a night means being "compliant" is ridiculous. But thank goodness it isn't a higher bar, or many people who earnestly are trying to increase the time they can keep a ratty cheap DME-issued mask on would be having their machines yanked away before they ever had a chance to find their way to a message board. A message board that could really help them achieve effective treatment rather than just a fake "compliance".
Well I've been on APAP therapy for 4 months now. I'm pretty much totally compliant (When I sleep, the mask is always on). Since I'm a bit OC, if I do something, I tend to do it to the nth degree. So I will be fully compliant until the day that I stop it completely. (Which, hopefully, won't ever happen).
I didn't even know there were CPAP alternatives until I found this board. But everything I've read here about surgeries are more failures than successes. And not just failures but actually making the problem worse. (I'm still out on the pillar process). And if I still need to wear a dental device to fix things, well that's not that much different than having a mask on your nose.
If surgery could guarentee me a fix with no additional cpap/dental requirements afterward I would line up in a heart beat, no matter what the recovery time. But they can't.
This is the same reason I don't pursue Lasik. Contacts/eyeglasses work just fine. Yeah, it's sort of a pain but I can live with it. Since Lasik cannot guarantee a 20/20 fix and there is some risk to your eyesight, I'm not doing it.
Since CPAP is pretty much a 100% effective at treating apnea, when used properly and comfortably, it's seems to be the way to go if you can tolerate it. The major problem is that a lot of people cannot tolerate it. And that's where I agree with RG, I think compliance is pretty bad. And I think it's pretty much an either/or. Either you can adapt to it and will use it a 100% all the time, or you finally give up. Heck, my first night was truly horrible. But it got better after that and now I really don't mind it.. But I can certainly see how some people would never be able to deal with that thing on your face.
I didn't even know there were CPAP alternatives until I found this board. But everything I've read here about surgeries are more failures than successes. And not just failures but actually making the problem worse. (I'm still out on the pillar process). And if I still need to wear a dental device to fix things, well that's not that much different than having a mask on your nose.
If surgery could guarentee me a fix with no additional cpap/dental requirements afterward I would line up in a heart beat, no matter what the recovery time. But they can't.
This is the same reason I don't pursue Lasik. Contacts/eyeglasses work just fine. Yeah, it's sort of a pain but I can live with it. Since Lasik cannot guarantee a 20/20 fix and there is some risk to your eyesight, I'm not doing it.
Since CPAP is pretty much a 100% effective at treating apnea, when used properly and comfortably, it's seems to be the way to go if you can tolerate it. The major problem is that a lot of people cannot tolerate it. And that's where I agree with RG, I think compliance is pretty bad. And I think it's pretty much an either/or. Either you can adapt to it and will use it a 100% all the time, or you finally give up. Heck, my first night was truly horrible. But it got better after that and now I really don't mind it.. But I can certainly see how some people would never be able to deal with that thing on your face.
-
Sleepless on LI
- Posts: 3997
- Joined: Mon May 30, 2005 6:46 pm
- Location: Long Island, New York
I looked at having to be on CPAP as unfortunate in the beginning, but now I have no problem with it. Sure, I'd rather sleep without worrying if my mask is leaking or being restricted by the equipment, but the benefits have so greatly outweighted the inconveniences that it's fine by me.
I personally have not missed one minute, God's honest truth, since the day I started three months ago. I don't think cessation of breathing at any time, day or night, is something you should mess around with and I am grateful there is a way to stop that from happening, at least 99% of the time.
Put me down for sticking with therapy until another treatment with the success rate such as this comes along. Then I might stop.
I personally have not missed one minute, God's honest truth, since the day I started three months ago. I don't think cessation of breathing at any time, day or night, is something you should mess around with and I am grateful there is a way to stop that from happening, at least 99% of the time.
Put me down for sticking with therapy until another treatment with the success rate such as this comes along. Then I might stop.
L o R i
-
Jan in Colo.
Well, I'm fairly new at my diagnosis and have had my CPAP machine 2 weeks? 3 weeks? Don't even know. I'm 100% compliant since I was diagnosed with severe apnea which would most definitely shorten my life if not treated. Now THAT really does provide a little extra motivation, doesn't it?
My husband is an ENT doc and yes, he does the surgery. Not all patients are good prospects for surgery. For instance, my AHI is 85...he said no way would he operate on someone that severe...he won't go over an AHI in the range of 30-50 and preferably even lower on that range. And he readily admits the surgery success rate is nowhere near 100%, more like 60%. He tries to talk people OUT of the surgery as much as possible. But on the other hand, some people are thrilled with the results of the surgery....
I do have a dental appliance that we had done probably 4 years ago. My husband told the dentist what to make...and he went overboard. This HUGE Hannibal Lector type gadget has to go in my mouth...and I have an extremely sensitive gag reflex. I've NEVER been able to put the thing in without vomiting. Lovely. So there sits a $1000 (doctor privilege price) weirdo mouthpiece in my dresser drawer.
So I think the moral of the story is that not all treatment modalities will work for any one patient. You have to find what suits you and the severity of your diagnosis....and then be as compliant as possible with it.
Jan in Colo.
My husband is an ENT doc and yes, he does the surgery. Not all patients are good prospects for surgery. For instance, my AHI is 85...he said no way would he operate on someone that severe...he won't go over an AHI in the range of 30-50 and preferably even lower on that range. And he readily admits the surgery success rate is nowhere near 100%, more like 60%. He tries to talk people OUT of the surgery as much as possible. But on the other hand, some people are thrilled with the results of the surgery....
I do have a dental appliance that we had done probably 4 years ago. My husband told the dentist what to make...and he went overboard. This HUGE Hannibal Lector type gadget has to go in my mouth...and I have an extremely sensitive gag reflex. I've NEVER been able to put the thing in without vomiting. Lovely. So there sits a $1000 (doctor privilege price) weirdo mouthpiece in my dresser drawer.
So I think the moral of the story is that not all treatment modalities will work for any one patient. You have to find what suits you and the severity of your diagnosis....and then be as compliant as possible with it.
Jan in Colo.
-
Sleepless on LI
- Posts: 3997
- Joined: Mon May 30, 2005 6:46 pm
- Location: Long Island, New York
Anybody checked out this URL that documents a guy's story after getting a MMA/GA.
http://www.robotics.com/MMA
I think Rested Gal hit upon that website, and I followed... or i found it on TAS.
http://www.robotics.com/MMA
I think Rested Gal hit upon that website, and I followed... or i found it on TAS.
Sleep: Did I ever know you?
Soccer: The beautiful game.
2006 Advertising Graduate: Any1 got a job?!
Soccer: The beautiful game.
2006 Advertising Graduate: Any1 got a job?!
I guess I'm part of the statistics.
Sleep study June 04. Purchased the equipment Oct 04(My pocket. Insurance says no). Tried for 2 or 3 weeks and could not stand the nasal mask I was fitted with, too tight under the nose and it hurt. Gave up and quit using it. Recently another doc told me I really should give it another try. Browsing around the Internet I find CPAP.com and this forum. Read a number of posts about side sleepers(100% for me), mouth breathing(Close to 24/7), and the success stories of others. Decided to try again with the Ultra Mirage FF mask. It works well enough for me, but leaves a sore dry throat. Added a humidifier. Voila, I think I can live with this hosehead condition.
Still don't see a lot of improvement in my sleep (Wake up 3, 4, ? times a night). BUT, it has stopped my very loud snoring and my wife gets to sleep a lot better. That's enough to keep me going.
Just ordered the 420E. Maybe I can self-diagnose with the software and find optimum pressure settings. (My current HMO, Kaiser, has a sleep lab but no doc. So a new study may be months away.)
Clif
Sleep study June 04. Purchased the equipment Oct 04(My pocket. Insurance says no). Tried for 2 or 3 weeks and could not stand the nasal mask I was fitted with, too tight under the nose and it hurt. Gave up and quit using it. Recently another doc told me I really should give it another try. Browsing around the Internet I find CPAP.com and this forum. Read a number of posts about side sleepers(100% for me), mouth breathing(Close to 24/7), and the success stories of others. Decided to try again with the Ultra Mirage FF mask. It works well enough for me, but leaves a sore dry throat. Added a humidifier. Voila, I think I can live with this hosehead condition.
Still don't see a lot of improvement in my sleep (Wake up 3, 4, ? times a night). BUT, it has stopped my very loud snoring and my wife gets to sleep a lot better. That's enough to keep me going.
Just ordered the 420E. Maybe I can self-diagnose with the software and find optimum pressure settings. (My current HMO, Kaiser, has a sleep lab but no doc. So a new study may be months away.)
Clif
_________________
| Mask: Ultra Mirage™ Full Face CPAP Mask with Headgear |
| Humidifier: HC150 Heated Humidifier With Hose, 2 Chambers and Stand |
| Additional Comments: Original= 9cm. current= APAP 7-11 |
-
Sleepless on LI
- Posts: 3997
- Joined: Mon May 30, 2005 6:46 pm
- Location: Long Island, New York
Clif,
First off, congratulations for coming back and giving it another try. Good move on your part.
Second, how long have you been using the machine this time? Have you been totally compliant, such as leaving the mask on ALL NIGHT???
You can expect miracles, but you most probably will be disappointed. It happens sometimes so subtly that it takes us by surprise, like realizing the fatigue is gone, or we don't have the overwhelming urge to take a nap at 4 PM anymore. Then it just gets better and better.
There are so many masks out there to try. I call it the "spice" in my therapy. Tonight I am trying a 5th mask, the Aura. I have been religiously using the Swift and really like it, but I will forever be trying new masks to see JUST IF there is something that may work even better for me.
Keep up the use of the machine and you WILL see a change for the better. Keep posting, too, for support. We are all behind you. Best of luck!
First off, congratulations for coming back and giving it another try. Good move on your part.
Second, how long have you been using the machine this time? Have you been totally compliant, such as leaving the mask on ALL NIGHT???
You can expect miracles, but you most probably will be disappointed. It happens sometimes so subtly that it takes us by surprise, like realizing the fatigue is gone, or we don't have the overwhelming urge to take a nap at 4 PM anymore. Then it just gets better and better.
There are so many masks out there to try. I call it the "spice" in my therapy. Tonight I am trying a 5th mask, the Aura. I have been religiously using the Swift and really like it, but I will forever be trying new masks to see JUST IF there is something that may work even better for me.
Keep up the use of the machine and you WILL see a change for the better. Keep posting, too, for support. We are all behind you. Best of luck!
L o R i
Lori,
Thank you for the supportive response. I appreciate your taking the time.
Got the FF in June and began to try using it. Dry mouth and sore throat. Had to take it off after a couple of hours. Got the humidifier 2 or 3 weeks later. Better but still ahd to tweak the settings to get max moisture without rain out. Continued the few hours and off routine. Still waking after and hour or two throughtout the night. Think I finally got the moisture right and use to the mask and slept >5 hours straight 2 nights ago and ~4 last night. So I'm getting better at it, I think.
Your comment about fatigue: I don't get up in the morning feeling fresh as a daisy and bubbling with energy, but as a senior citizen I don't really expect to any more. I do feel less fatigued though. Before I could get up and immediately feel like going back to bed.
w/r
Clif
Thank you for the supportive response. I appreciate your taking the time.
Got the FF in June and began to try using it. Dry mouth and sore throat. Had to take it off after a couple of hours. Got the humidifier 2 or 3 weeks later. Better but still ahd to tweak the settings to get max moisture without rain out. Continued the few hours and off routine. Still waking after and hour or two throughtout the night. Think I finally got the moisture right and use to the mask and slept >5 hours straight 2 nights ago and ~4 last night. So I'm getting better at it, I think.
Your comment about fatigue: I don't get up in the morning feeling fresh as a daisy and bubbling with energy, but as a senior citizen I don't really expect to any more. I do feel less fatigued though. Before I could get up and immediately feel like going back to bed.
w/r
Clif
_________________
| Mask: Ultra Mirage™ Full Face CPAP Mask with Headgear |
| Humidifier: HC150 Heated Humidifier With Hose, 2 Chambers and Stand |
| Additional Comments: Original= 9cm. current= APAP 7-11 |
-
Sleepless on LI
- Posts: 3997
- Joined: Mon May 30, 2005 6:46 pm
- Location: Long Island, New York
.I do feel less fatigued though. Before I could get up and immediately feel like going back to bed
BINGO!!! There you go. It's starting to work. That's how it takes hold sometimes, very subtly. Keep up the good work and you'll find more and more little things, until one day you'll see they've added up to a huge improvement.
I'm not just whistling in the dark here. Been there, done that. I feel literally like my old self, when I never used to run out of steam. I may not be a senior citizen yet, but I'm almost 50. I feel, though, like I'm in my 20's again, no fooling.
Clif, keep going. Be compliant. You'll be doing yourself the biggest favor you could do for yourself. It does work. Best wishes on continued success.
L o R i
-
rested gal
- Posts: 12881
- Joined: Thu Sep 09, 2004 10:14 pm
- Location: Tennessee
Clif, that's excellent that you are giving it a go again, and great that you found this message board to help you more than the "professionals" were helping you the first time around.
I'll be 61 in December. CPAP treatment (autopap, actually) has made a very definite difference for the good for me. Two years on it this month.
Since you're here now and are buying stuff for yourself, here's a little tip for controlling rainout. You'll be able to crank that humidifier up just as much as you wish and not have to worry about those aggravating drops of water splashing on ya...
Aussie heated hose ("heated cpap tube") from sleepzone.com.au
If you decide to get the heated hose (I have it and love it!) be sure to tell them which machine you have -- or will have. Since you mentioned you're thinking about getting a 420E autopap (one of my all time favorites) they would need to send you the heated hose that has the little sensor tube inside it, made for the 420E.
I'll be 61 in December. CPAP treatment (autopap, actually) has made a very definite difference for the good for me. Two years on it this month.
Since you're here now and are buying stuff for yourself, here's a little tip for controlling rainout. You'll be able to crank that humidifier up just as much as you wish and not have to worry about those aggravating drops of water splashing on ya...
Aussie heated hose ("heated cpap tube") from sleepzone.com.au
If you decide to get the heated hose (I have it and love it!) be sure to tell them which machine you have -- or will have. Since you mentioned you're thinking about getting a 420E autopap (one of my all time favorites) they would need to send you the heated hose that has the little sensor tube inside it, made for the 420E.
I may not be a senior citizen yet, but I'm almost 50. I feel, though, like I'm in my 20's again, no fooling.
Lori, I feel the same as you do. I am almost 50(47) and I feel like I am in my 20's also.(no joke) I wake up every morning and I am on the top of the world. I am glad I did not give up. I can tell you without the remstar auto with c flex I would have given up. I could not do the cpap treatment. but APAP was easy...........
th
Lori, I feel the same as you do. I am almost 50(47) and I feel like I am in my 20's also.(no joke) I wake up every morning and I am on the top of the world. I am glad I did not give up. I can tell you without the remstar auto with c flex I would have given up. I could not do the cpap treatment. but APAP was easy...........
th