I won't quit trying, but don't know how to fix this!!!

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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HopingForSuccess
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I won't quit trying, but don't know how to fix this!!!

Post by HopingForSuccess » Mon Sep 01, 2014 10:43 am

I should note that I can not see how to go back in to adjust my equipment profile to reflect that I've transitioned to a full face mask. Its a fairly good fit now, after trying two others which were not. I have been staying at this, attempting to see why things are going so poorly...
To think that if I "give it time" things will improve - is a joke. If I don't change something in the set up then nothing will improve. I have tried propping up so straight to mimic a church pew. When that failed I have given in to side sleeping again, yet with careful attention to the exact angle my head/mouth/tongue should be in. I have assessed what pillows may help to get me in the best position. When the pressure has ramped up I've cinched down various straps to contain the gale force coming at me. With all that, the pressure was noted above 14 on yesterday's brief nap. When I went to bed for real it ramped up to 12 with in the first hour. I've asked my husband to let me know if it gets "noisy" so that I may know if the mask is leaking. After being in bed 4 hours I was in good position, the mask was not leaking but he knew to look at the pressure as he was awoken by the machine pushing at a volume of 18.9. There is a failure in this treatment process and I feel at a lost to identify it!!

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Pugsy
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Re: I won't quit trying, but don't know how to fix this!!!

Post by Pugsy » Mon Sep 01, 2014 10:51 am

To edit your equipment go to the user control panel....Profile tab then the equipment tab and then edit equipment tab. Make your changes and click submit.

I don't understand what your problem is from your above comments. If the machine thinks it needs to go to 18 cm then there is a reason for it wanting to go there. Now that amount of pressure can present problems but the machine usually has a good reason for wanting to go where it wants to go.

Maybe time to use the software and post images of your detailed reports so we can see what is going on. We don't know at this point what you are trying to fix.

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chunkyfrog
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Re: I won't quit trying, but don't know how to fix this!!!

Post by chunkyfrog » Mon Sep 01, 2014 10:57 am

I'm guessing that your machine is set from 4-20, which is a lot larger range than most find effective. (I use 9-13.6)
What is your machine set for?; --and what pressure did your titration result in?
When the lower level is too low, the machine follows the apnea, and goes berserk because the apnea has a head start.
--and when the upper level is too high, the pressure does not stop increasing until it tops out.
That is not treatment--it is torture.
Once we know what your titrated pressure is, we can help you find a tighter range that will let you sleep and be well.

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palerider
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Re: I won't quit trying, but don't know how to fix this!!!

Post by palerider » Mon Sep 01, 2014 11:05 am

HopingForSuccess wrote:I should note that I can not see how to go back in to adjust my equipment profile to reflect that I've transitioned to a full face mask. Its a fairly good fit now, after trying two others which were not. I have been staying at this, attempting to see why things are going so poorly...
To think that if I "give it time" things will improve - is a joke. If I don't change something in the set up then nothing will improve. I have tried propping up so straight to mimic a church pew. When that failed I have given in to side sleeping again, yet with careful attention to the exact angle my head/mouth/tongue should be in. I have assessed what pillows may help to get me in the best position. When the pressure has ramped up I've cinched down various straps to contain the gale force coming at me. With all that, the pressure was noted above 14 on yesterday's brief nap. When I went to bed for real it ramped up to 12 with in the first hour. I've asked my husband to let me know if it gets "noisy" so that I may know if the mask is leaking. After being in bed 4 hours I was in good position, the mask was not leaking but he knew to look at the pressure as he was awoken by the machine pushing at a volume of 18.9. There is a failure in this treatment process and I feel at a lost to identify it!!
it would help if you didn't psych yourself out making things sound much worse than they are, it makes it harder to mentally adjust, there's no gale force winds. the machine is trying to maintain a set pressure, and when you take the mask off, it *keeps* trying to maintain that pressure by blowing more air, but, since it can't pressurize the whole room, especially since it's pulling out out of that room, it just runs at full speed, the moment you put your mask on, it slows down and is only blowing 1/10th as much air (at 4cm pressure).

without seeing any detailed sleepyhead graphs, there's no way of knowing why your pressure is going up, but it doesn't go up for no reason. snoring, flow limitations, apneas, hypopneas, these things make the pressure go up. it never "just goes up".

use sleepyhead to get your data, then turn off the calendar (hit the ^ next to the date) turn off the right sidebar, and show us the detail tab on the left, and then the event flags, flow, pressure, leak, snore and flow limitiation graphs on the right.

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chunkyfrog
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Re: I won't quit trying, but don't know how to fix this!!!

Post by chunkyfrog » Mon Sep 01, 2014 11:14 am

In an earlier thread, you mentioned that your ramp was set for 5-8, and then goes higher--much higher.
You had also referred to your pressure "ramping up" to higher pressures.
This is not the same ramp that the manufacturer means. (the first one is)
Can you see what the min. and max therapy settings are?
Those numbers can be tightened down to deliver you an effective pressure range with less disturbance.
--but this must be done in the clinician's menu.

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HopingForSuccess
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Re: I won't quit trying, but don't know how to fix this!!!

Post by HopingForSuccess » Mon Sep 01, 2014 11:56 am

Pugsy wrote:To edit your equipment go to the user control panel....Profile tab then the equipment tab and then edit equipment tab. Make your changes and click submit.

I don't understand what your problem is from your above comments. If the machine thinks it needs to go to 18 cm then there is a reason for it wanting to go there. Now that amount of pressure can present problems but the machine usually has a good reason for wanting to go where it wants to go.

Maybe time to use the software and post images of your detailed reports so we can see what is going on. We don't know at this point what you are trying to fix.
Pugsy, I appreciate your tip on navigating use of the site. I appreciate your direct question about What is the problem?
I will come to understand my software but at this point I would say my settings have limited my access. Yes, I know that is yet another area I need to explore.
I could now sum up The problem more accurately. It is my naïvety. Silly me to think that I'd be all set with numbers gleaned after my titration. They start me at 5 and ramp up to 8 which was noted as my "sweet spot". Silly me to think that 8 would take care of it. I now understand that my problem IS SEVERE and the pressure may need to ramp up to near 20 and that I'd better strap that mask on and be prepared. I need to take on the red stripes on my little face as a new fashion statement and think of expandable pants to accommodate the air filled abdomen. There it is, pretty discouraged.

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HopingForSuccess
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Re: I won't quit trying, but don't know how to fix this!!!

Post by HopingForSuccess » Mon Sep 01, 2014 12:12 pm

chunkyfrog wrote:In an earlier thread, you mentioned that your ramp was set for 5-8, and then goes higher--much higher.
You had also referred to your pressure "ramping up" to higher pressures.
This is not the same ramp that the manufacturer means. (the first one is)
Can you see what the min. and max therapy settings are?
Those numbers can be tightened down to deliver you an effective pressure range with less disturbance.
--but this must be done in the clinician's menu.
THANKS SO MUCH Chunky Frog. Best advice yet!!

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HopingForSuccess
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Re: I won't quit trying, but don't know how to fix this!!!

Post by HopingForSuccess » Mon Sep 01, 2014 12:13 pm

palerider wrote:
HopingForSuccess wrote:I should note that I can not see how to go back in to adjust my equipment profile to reflect that I've transitioned to a full face mask. Its a fairly good fit now, after trying two others which were not. I have been staying at this, attempting to see why things are going so poorly...
To think that if I "give it time" things will improve - is a joke. If I don't change something in the set up then nothing will improve. I have tried propping up so straight to mimic a church pew. When that failed I have given in to side sleeping again, yet with careful attention to the exact angle my head/mouth/tongue should be in. I have assessed what pillows may help to get me in the best position. When the pressure has ramped up I've cinched down various straps to contain the gale force coming at me. With all that, the pressure was noted above 14 on yesterday's brief nap. When I went to bed for real it ramped up to 12 with in the first hour. I've asked my husband to let me know if it gets "noisy" so that I may know if the mask is leaking. After being in bed 4 hours I was in good position, the mask was not leaking but he knew to look at the pressure as he was awoken by the machine pushing at a volume of 18.9. There is a failure in this treatment process and I feel at a lost to identify it!!
it would help if you didn't psych yourself out making things sound much worse than they are, it makes it harder to mentally adjust, there's no gale force winds. the machine is trying to maintain a set pressure, and when you take the mask off, it *keeps* trying to maintain that pressure by blowing more air, but, since it can't pressurize the whole room, especially since it's pulling out out of that room, it just runs at full speed, the moment you put your mask on, it slows down and is only blowing 1/10th as much air (at 4cm pressure).

without seeing any detailed sleepyhead graphs, there's no way of knowing why your pressure is going up, but it doesn't go up for no reason. snoring, flow limitations, apneas, hypopneas, these things make the pressure go up. it never "just goes up".

Yep, Pale Rider. You're right. I will try and reign in my disappointment.

use sleepyhead to get your data, then turn off the calendar (hit the ^ next to the date) turn off the right sidebar, and show us the detail tab on the left, and then the event flags, flow, pressure, leak, snore and flow limitiation graphs on the right.

SleepyToo2
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Re: I won't quit trying, but don't know how to fix this!!!

Post by SleepyToo2 » Mon Sep 01, 2014 12:18 pm

Sorry you are having trouble. If most of your apneas are taken care of with a pressure of 8, I cannot understand why you might need to go to near 20. As has been indicated, if the pressure is set too high, the machine will try and get there to make sure that errant apnea is brought under control. The reality may be that you actually need a pressure much closer to 8. I think a lot of people here would suggest that you get it restricted to a maximum of 10 to 12 (based on your starting pressure of 5). If the therapeutic pressure was diagnosed as being 8, you might benefit from being set at 6 to 10. Then, after reviewing your data to see how many times the pressure was pushing against the top limit, you might want to have it raised (or do it yourself, although that may be something you do not want to do while you are still paying for your machine).

It is important to understand that the pressure does not indicate the severity of your apnea. The severity of the apnea is shown by the number of times you stop breathing each hour (AHI), and the pressure just indicates the amount of force needed to get the airway open again. Even at a pressure of 20 cm, the machine would not be able to inflate a balloon. It just seems that way because you are half asleep and/or you have small leaks that sound far worse than they actually are. Tightening the straps too much can actually make the problem worse because you distort the mask. I actually find the pillows mask, with a chin strap, gives me the best control over my leaks and AHI. My machine is fixed pressure, so I don't have the option of getting to higher pressures.

Good luck with getting everything sorted out. It sounds like you are heading in the right direction, even though it may not seem like it at the moment.

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chunkyfrog
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Re: I won't quit trying, but don't know how to fix this!!!

Post by chunkyfrog » Mon Sep 01, 2014 12:20 pm

Hey, it's always a gale force when you first feel it.
After awhile, most get used to it. (you'd be surprised how quickly)
Later on, it's not unusual to wake up and feel for the exhaust stream to confirm the machine is running.

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palerider
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Re: I won't quit trying, but don't know how to fix this!!!

Post by palerider » Mon Sep 01, 2014 12:24 pm

HopingForSuccess wrote:Yep, Pale Rider. You're right. I will try and reign in my disappointment.
I'm not suggesting that you resign yourself to your disappointment, rahter, that you can make things worse than they are by thking very negative thoughts about them.

there are things that can be done to make it better, people here can help with advice to that effect.

but trying to have a more positive attitude will only help you to achieve success.

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Pugsy
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Re: I won't quit trying, but don't know how to fix this!!!

Post by Pugsy » Mon Sep 01, 2014 12:28 pm

The red marks on the face...fixable...maybe a new mask or maybe just a mask liner.

The air in the belly causing your pants to be too tight...aerophagia and it can also be managed
Maybe with some changes in your pressure settings...maybe with a different machine. It's a very common problem...you can search the forum threads for aerophagia and see how common it is
wiki/index.php/Aerophagia
viewtopic/t46412/Go-home-and-live-with-it.html#p416798
Sometimes just using EPR exhale relief makes a huge difference.

You haven't presented one problem that hasn't been encountered by hundreds and hundreds of people. Fixable...maybe some fixes a little more difficult than other but fixable nonetheless. Time and patience and lots of experiments is often needed. While some people take to this therapy like a duck to water with zero issues...and they feel the miracle right away...most don't.

If you are unwilling or unable to make any changes yourself then you need to get the DME and doctor to step up and help out.
Light a fire under their butts.

Sounds like your machine might be set to ramp to 8 cm and then be in auto mode to self adjust as needed but we can't tell for sure base on what you have told us here.
We also can't see what the machine is doing without seeing the software detailed reports. We are just guessing.
If we could see what the machine is doing then we can offer ideas to help...either you implement the ideas or get your medical care team to implement them for you if you aren't comfortable doing it yourself.

First of all you need to know exactly what your machine settings are and to do that you need to be able to get to the secret clinical menu settings. Read the manual.
http://www.apneuvereniging.nl/forum/pdf ... manual.pdf
for a video
http://www.cpaplibrary.com/machines.html

How do we eat the cpap elephant? One bite at a time. Pick a problem and work on fixing it...one problem at a time.

_________________
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palerider
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Re: I won't quit trying, but don't know how to fix this!!!

Post by palerider » Mon Sep 01, 2014 12:37 pm

Pugsy wrote:How do we eat the cpap elephant?
dat's funny, cuz you gots a hosenose *

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Pugsy
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Re: I won't quit trying, but don't know how to fix this!!!

Post by Pugsy » Mon Sep 01, 2014 1:00 pm

palerider wrote: dat's funny, cuz you gots a hosenose *
yep... that's why I used the elephant as example instead of something else.

Cut off one chunk into manageable bites to eat it....pick a problem and start working on fixing what can be fixed one problem at a time instead of trying to fix everything all at one time.

First thing I would do...learn my settings and decide what can be done about the aerophagia issues since that impacts so much.
Learn what my machine was doing and why and what could I maybe do to improve on the problem.
Rome wasn't built in a day and successful cpap therapy isn't either.

_________________
Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier
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I may have to RISE but I refuse to SHINE.

If you want to try the Eclipse mask and want a special promo code to get a little off the price...send me a private message.

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HopingForSuccess
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Re: I won't quit trying, but don't know how to fix this!!!

Post by HopingForSuccess » Mon Sep 01, 2014 4:32 pm

SleepyToo2 wrote:Sorry you are having trouble. If most of your apneas are taken care of with a pressure of 8, I cannot understand why you might need to go to near 20. As has been indicated, if the pressure is set too high, the machine will try and get there to make sure that errant apnea is brought under control. The reality may be that you actually need a pressure much closer to 8. I think a lot of people here would suggest that you get it restricted to a maximum of 10 to 12 (based on your starting pressure of 5). If the therapeutic pressure was diagnosed as being 8, you might benefit from being set at 6 to 10. Then, after reviewing your data to see how many times the pressure was pushing against the top limit, you might want to have it raised (or do it yourself, although that may be something you do not want to do while you are still paying for your machine).

It is important to understand that the pressure does not indicate the severity of your apnea. The severity of the apnea is shown by the number of times you stop breathing each hour (AHI), and the pressure just indicates the amount of force needed to get the airway open again. Even at a pressure of 20 cm, the machine would not be able to inflate a balloon. It just seems that way because you are half asleep and/or you have small leaks that sound far worse than they actually are. Tightening the straps too much can actually make the problem worse because you distort the mask. I actually find the pillows mask, with a chin strap, gives me the best control over my leaks and AHI. My machine is fixed pressure, so I don't have the option of getting to higher pressures.

Good luck with getting everything sorted out. It sounds like you are heading in the right direction, even though it may not seem like it at the moment.
Sleepy too 2, very informative response.When on my back, from my at home sleep study, my AHI was 46.3
What is making most sense as I read these kind responses, is the idea that the apnea has gotten a head start and the CPAP is running up to a high pressure to try and keep up. I very much like your suggestion to start at 6 to 10. The concept of setting a lower limit for the top of the range sounds like that would be much more realistic. That could mean not strapping so tight and less aerophagia. Lets hope my clinician is receptive to my suggestions.