Ok, I've done everything I know to do and I am discouraged!

[sister]

Hi,
I guess that I am discouraged at this point and just need to vent. I have been trying to use the c-pap,(now on autopap),for so very long and it is not giving me good therapy yet.
I truly do try all that I read here,I am 100% compliant and have been for 14 months now. I just can't get my AHI down,it stays around 18 every night so I know that I am not getting good therapy.
I had UPPP surgery in 2007 and I have a hard time keeping the air from escaping from my mouth.
I use tape,a wide chin strap and sometimes polident to no avail. I know that I need a ffm but have tried all of them and cannot tolerate them on my nose.
I did use the ffm for several months and I am left with a permanent hump on my nose and it is crooked from trying to use it.
My husband has told me never to put a ffm on my nose again.
I do not detect any leaks at all when I go to sleep but something must be leaking somewhere.

I am quite frankly at a total loss as to what to do next.Honestly, I have tried everything!
My Dr. nor his nurse has any more answers for me.I just know that I probrably have been labeled the problem patient, though I really try hard not to be.
I read every word that is on this forum,all the time,trying to find some answers,and I really thank you people for all your help.

Maybe there are people that no matter how hard they try they just don't succeed?
I think that I must be one of those.
GOD BLESS YOU!

[robysue]

My heart goes out to you. It's got to be extremely frustrating to not feel any better after 14 months and to see high AHI numbers night after night after 14 months.

Re the FFM problem: Have you thought about trying the new Resmed Quattro FX? It does NOT have the traditional nose bridge piece that has caused your bump problem. Other possible masks to try are hybrid masks, such as the Resmed Mirage Liberty---these cover your mouth, but use nasal pillows for the nose. And so there is no nose bridge piece of the sort a traditional FFM has.

[Country4ever]

I was on APAP for awhile and it just wasn't working. I was waking up alot during the night. I read here that maybe I should change it to straight CPAP and that was the cure for me! I would try straight CPAP for awhile and see if that helps!

[TooGroggy]

Sister, your profile shows that you are using Rescan. Have you looked at the graphs to see what they report as far as leaks?

Also, how does your AHI breaks down as far as obstructive vs. central events? If you see a lot of the latter, it could be an issue with the pressure settings rather than leaks.

[Guest]

Hi,
I guess that I am discouraged at this point and just need to vent. I have been trying to use the c-pap,(now on autopap), for so very long and it is not giving me good therapy yet.
I truly do try all that I read here, I am 100% compliant and have been for 14 months now. I just can't get my AHI down, it stays around 18 every night so I know that I am not getting good therapy.
I had UPPP surgery in 2007 and I have a hard time keeping the air from escaping from my mouth.
I use tape, a wide chin strap and sometimes polident to no avail. I know that I need a ffm but have tried all of them and cannot tolerate them on my nose.
I did use the ffm for several months and I am left with a permanent hump on my nose and it is crooked from trying to use it.
My husband has told me never to put a ffm on my nose again.
I do not detect any leaks at all when I go to sleep but something must be leaking somewhere.

I am quite frankly at a total loss as to what to do next. Honestly, I have tried everything!
My Dr. nor his nurse has any more answers for me. I just know that I probrably have been labeled the problem patient, though I really try hard not to be.
I read every word that is on this forum,all the time, trying to find some answers, and I really thank you people for all your help.

Maybe there are people that no matter how hard they try they just don't succeed?
I think that I must be one of those.
GOD BLESS YOU!

For one thing, from what I've read, an APAP (in a range of pressures) can produce disastrous results if the person has had UPPP........like what you've experienced. I can't find what pressure(s) you're using, either.

Regardless of what your husband has told you, you NEED to use a full face mask. Having a UPPP procedure practically mandates that. You didn't say which one(s) you had used, but if a user selects the "correct" mask, it should not hurt or disfigure the user. Sounds like you had the wrong mask, the wrong size or had it adjusted too tight. If properly adjusted, it should "float" on your face.
On top of that, using the wrong bed pillow will make things (like leaks) worse. What kind/type do you use?

I hate to be the one to inform you, but you haven't tried EVERYTHING.......yet.


Den

[sister]

[quote="robysue"]My heart goes out to you. It's got to be extremely frustrating to not feel any better after 14 months and to see high AHI numbers night after night after 14 months.

Re the FFM problem: Have you thought about trying the new Resmed Quattro FX? It does NOT have the traditional nose bridge piece that has caused your bump problem. Other possible masks to try are hybrid masks, such as the Resmed Mirage Liberty---these cover your mouth, but use nasal pillows for the nose. And so there is no nose bridge piece of the sort a traditional FFM has.[/quote

Hi robysue,
thanks for the reply,I do want to try the new Resmed Quattro Fx but my dme says I'm not due for a new mask until 6 months from now. I just got a new comfortlite 2 1-28-11.
I also would like to try the Hybrid or Liberty but I guess I have to wait.

Thanks!

[robysue]

Hi robysue,
thanks for the reply,I do want to try the new Resmed Quattro Fx but my dme says I'm not due for a new mask until 6 months from now. I just got a new comfortlite 2 1-28-11.
I also would like to try the Hybrid or Liberty but I guess I have to wait.

How old is the new cmfortlite? Any chance the DME might be willing to let you swap it for a Hybrid, Liberty or Quattro FX?

[sister]

I was on APAP for awhile and it just wasn't working. I was waking up alot during the night. I read here that maybe I should change it to straight CPAP and that was the cure for me! I would try straight CPAP for awhile and see if that helps!

Hi Country4ever,
I used straight c-pap for 15 months back in 2006 and 2007 before the surgery,no success at all.
Dr. recommended surgery,did that,no c-pap for 2 years.
In 2009 apnea came back,worse than ever,not sure that it ever left as no sleep study was ever done post op.

In just the last 2 months he is trying me on autopap,no better.
Thanks so very much!

[sister]

Sister, your profile shows that you are using Rescan. Have you looked at the graphs to see what they report as far as leaks?

Also, how does your AHI breaks down as far as obstructive vs. central events? If you see a lot of the latter, it could be an issue with the pressure settings rather than leaks.

Hi Too Groggy,
I currently have a rental machine so I don't have the data card or the software.
So, I guess I am just playing in the dark. I can look at the LCD screen, that's all.
My pressure is set 8-12 ,my Ahi is always 18 or more,(sometimes in the 20's. and my leaks are always from the 80's to over 100.
Usually my pressure reads 11.4 or 11.8.
Thanks!

[sister]

Hi robysue,
thanks for the reply,I do want to try the new Resmed Quattro Fx but my dme says I'm not due for a new mask until 6 months from now. I just got a new comfortlite 2 1-28-11.
I also would like to try the Hybrid or Liberty but I guess I have to wait.

How old is the new cmfortlite? Any chance the DME might be willing to let you swap it for a Hybrid, Liberty or Quattro FX?

I asked, he said no,I got it 1-28-11
thanks!

[robysue]

Hi Too Groggy,
I currently have a rental machine so I don't have the data card or the software.
So, I guess I am just playing in the dark. I can look at the LCD screen, that's all.

The Resmed Elites (both S8 and S9) have some decent quality data on the LCD. You are at least tracking it manually? Keeping a written record of the overnight numbers?

My pressure is set 8-12 ,my Ahi is always 18 or more,(sometimes in the 20's.

Does the S8's LCD data break the AHI into AI and HI? I seem to recall there has been some discussion about whether the S8's algorithm is prone to over reporting hypopneas.

and my leaks are always from the 80's to over 100.
Usually my pressure reads 11.4 or 11.8.
Thanks!

Are the units for those leak rates L/min? Or are the leak rates .80 to 1.00 L/sec? It makes a big difference in just how bad your leaks are. But in either case, if these are your 95% leak rates coming off the machine's LCD, they are WAY, WAY too high: Plenty high enough to be preventing you from getting quality therapy.

And if we combine that with the fact that you've got a very sore nose, it is quite likely that you are over tightening your mask in an effort to stop the leaks. Only thing is: Overtightening a mask can lead to as many problems with leaks as having the mask way too loose. Review your mask's fitting guide carefully. And post a new thread here with the title: Need help adjusting my <fill in mask name>

[sister]

Hi,
I guess that I am discouraged at this point and just need to vent. I have been trying to use the c-pap,(now on autopap), for so very long and it is not giving me good therapy yet.
I truly do try all that I read here, I am 100% compliant and have been for 14 months now. I just can't get my AHI down, it stays around 18 every night so I know that I am not getting good therapy.
I had UPPP surgery in 2007 and I have a hard time keeping the air from escaping from my mouth.
I use tape, a wide chin strap and sometimes polident to no avail. I know that I need a ffm but have tried all of them and cannot tolerate them on my nose.
I did use the ffm for several months and I am left with a permanent hump on my nose and it is crooked from trying to use it.
My husband has told me never to put a ffm on my nose again.
I do not detect any leaks at all when I go to sleep but something must be leaking somewhere.

I am quite frankly at a total loss as to what to do next. Honestly, I have tried everything!
My Dr. nor his nurse has any more answers for me. I just know that I probrably have been labeled the problem patient, though I really try hard not to be.
I read every word that is on this forum,all the time, trying to find some answers, and I really thank you people for all your help.

Maybe there are people that no matter how hard they try they just don't succeed?
I think that I must be one of those.
GOD BLESS YOU!

For one thing, from what I've read, an APAP (in a range of pressures) can produce disastrous results if the person has had UPPP........like what you've experienced. I can't find what pressure(s) you're using, either.

Regardless of what your husband has told you, you NEED to use a full face mask. Having a UPPP procedure practically mandates that. You didn't say which one(s) you had used, but if a user selects the "correct" mask, it should not hurt or disfigure the user. Sounds like you had the wrong mask, the wrong size or had it adjusted too tight. If properly adjusted, it should "float" on your face.
On top of that, using the wrong bed pillow will make things (like leaks) worse. What kind/type do you use?

I hate to be the one to inform you, but you haven't tried EVERYTHING.......yet.


Den

Hi Den,
Thanks for the response.
I thought that i had read that a person with UPPP surgery should not use autopap. But then why would my DR. want me to try it?
I know that I need a ffm but I keep on trying the ones that I have and I am totally ruining my nose.
I tried 2 nights ago and my nose looked like someone had slammed it with a baseball bat!
honestly,it was and still is completely black,it is bruised so very bad.
There is no way I can go anywhere or let anyone see me for many days after I try to use one.
I want to try the Liberty or Hybrid as soon as I can get a new mask but that won't be for months now.
I have tried so many,I now have the the Comfortgel,Fitlife,Quattro,Fp431.
I would also like to try the quattro fx but I have to wait until I can get one.
So, you are right,I have not tried them all but I am still trying.
Thanks so very much for your response.
GOD BLESS YOU!

[sister]

Hi Too Groggy,
I currently have a rental machine so I don't have the data card or the software.
So, I guess I am just playing in the dark. I can look at the LCD screen, that's all.

The Resmed Elites (both S8 and S9) have some decent quality data on the LCD. You are at least tracking it manually? Keeping a written record of the overnight numbers?

My pressure is set 8-12 ,my Ahi is always 18 or more,(sometimes in the 20's.

Does the S8's LCD data break the AHI into AI and HI? I seem to recall there has been some discussion about whether the S8's algorithm is prone to over reporting hypopneas.

and my leaks are always from the 80's to over 100.
Usually my pressure reads 11.4 or 11.8.
Thanks!

Are the units for those leak rates L/min? Or are the leak rates .80 to 1.00 L/sec? It makes a big difference in just how bad your leaks are. But in either case, if these are your 95% leak rates coming off the machine's LCD, they are WAY, WAY too high: Plenty high enough to be preventing you from getting quality therapy.

And if we combine that with the fact that you've got a very sore nose, it is quite likely that you are over tightening your mask in an effort to stop the leaks. Only thing is: Overtightening a mask can lead to as many problems with leaks as having the mask way too loose. Review your mask's fitting guide carefully. And post a new thread here with the title: Need help adjusting my <fill in mask name>

Hi,
Yes I keep a diary of my data every morning in a notebook.My leaks are L/S and they are always that high.
I honestly do not notice and discomfort with the nasal pillows or any leaks at all. I go to sleep with the Comfortlite 2 very well,Only sleep 4 or 5 hours but I check my data as soon as I wake up and the leaks are always high.
I feel absolutely no leaks during the night or when I wake up.
I know that I am not getting good therapy though.
Thanks so much!

[robysue]

and my leaks are always from the 80's to over 100.
Usually my pressure reads 11.4 or 11.8.
Thanks!

Are the units for those leak rates L/min? Or are the leak rates .80 to 1.00 L/sec? It makes a big difference in just how bad your leaks are. But in either case, if these are your 95% leak rates coming off the machine's LCD, they are WAY, WAY too high: Plenty high enough to be preventing you from getting quality therapy.

And if we combine that with the fact that you've got a very sore nose, it is quite likely that you are over tightening your mask in an effort to stop the leaks. Only thing is: Overtightening a mask can lead to as many problems with leaks as having the mask way too loose. Review your mask's fitting guide carefully. And post a new thread here with the title: Need help adjusting my <fill in mask name>

Hi,
Yes I keep a diary of my data every morning in a notebook.My leaks are L/S and they are always that high.
I honestly do not notice and discomfort with the nasal pillows or any leaks at all. I go to sleep with the Comfortlite 2 very well,Only sleep 4 or 5 hours but I check my data as soon as I wake up and the leaks are always high.
I feel absolutely no leaks during the night or when I wake up.
I know that I am not getting good therapy though.
Thanks so much!

Are you sure the leaks are in the neighborhood of 80 L/sec? Or is it .80 L/sec. It makes a big difference: I don't see how you could be leaking at 80 L/sec: That would be equal to 4800 L/min, which is an order of magnitude or two off of a reasonable number for a Large Leak rate.

So I'll assume that the leak rates are actually between 0.80 L/sec and 1.something L/sec. At 0.8 L/sec, your 95% leak rate is roughly 48 L/min, and that's twice as high as ResScan's RedLine----which indicates a leak that is large enough to affect the quality of the therapy and the reliability of the data---at least on the S9 series. I'd assume the S8's are similar. Now, 5% of one hour is only three minutes, but you are leaking at a rate AT or ABOVE 48 L/min for an average of three minutes for every hour your machine is on. The critical question, though, is how much of the time are you leaking AT or Above 24 L/min, which equals 0.4 L/sec? And you probably can't tell that from the LCD data on the machine. On the S9 series, the user gets a Red Frowny Face when the leak rate is AT or ABOVE 24 L/min (or 0.4 L/sec) for 25% of the night---i.e. averaging about 15 minutes for every hour the machine is on with Large Leaks. I don't think the S8 has any such "feature" on its LCD though.

Since you don't feel any leaks, but there obviously are some large leaks happening, the question becomes: Are you opening your mouth at night and leaking therapy air out that way? You might well not notice the leaks since you likely close your mouth as you are waking up. Has hubby noticed any hissing noises coming out of your mouth while you are asleep?

[Pugsy]

The S8 does indeed report leaks as L/sec. It also uses the .4 L/sec line in the sand. Above it and all bets are off.