Can I have my own thread?

[SleepingUgly]

At least my song was not deleted! Whew! Dodged a bullet there...

I'll post more later about last night, after I go out in public with a red indentation between my nose and upper lip (thanks, Activa-LT). I'll just keep smiling and no one will notice the indent, they will just think I'm nuts.

[Drowsy Dancer]

At least my song was not deleted! Whew! Dodged a bullet there...

I'll post more later about last night, after I go out in public with a red indentation between my nose and upper lip (thanks, Activa-LT). I'll just keep smiling and no one will notice the indent, they will just think I'm nuts.

Alas. I still have a divot in the bridge of my nose from my initial tangles with a Comfort Gel nasal mask. To continue the song theme,

I fought the mask and the mask won/I fought the mask and the mask won

DD

[carbonman]

Can I have my own thread where I can post my problems and people can inundate me with expressions of empathy and helpful, supportive advice? Where I can say blasphemous things like, "I dread going to bed with CPAP" and no one will get out their old hoses and whip me with them?

Looks like that excludes two by fours....

...so, at the risk of opening that old wound....

SU, what can this group do to best help you???

As per your avatar, I come to the conclusion that you
have a connection to or fondness for the Na'vi.
Maybe you need to disconnect yourself from the reality of cpap....
the physical sensations.
Separte yourself from the materialistic connection to cpap.

Strive to create a mind/body connection to your mask.
Such as the sentience that the Na'vi created w/the trees and
plant life that they call Eywa. Conjure your own neural
quere and create a Tsheylu to your mask. In so doing, let
your mind control the mask and eventually you will achieve
lknimaya just as the Na'vi would do w/a ikran or direhorse.
Remember, once the connection is made, fly, immediately and
the bond will last a life time.

SU, I see you.

[SleepingUgly]

I managed to sleep for about 6 or 6.5 hours with the Activa-LT set on 4cm. My AHI was 2.3, but my flow limitations look not so good (I don't know how to judge those graphs except to say it doesn't look good, but I suppose it could be worse). Unfortunately I got a mark from the bottom of the mask between my nose and lip that lasted all day! I am thinking of trying nasal pillows tonight. Not sure what I'll set it to... get a 4cm baseline, or crank it up a bit, perhaps.

[-SWS]

My AHI was 2.3, but my flow limitations look not so good.

Below I'm posting a snapshot of SU's data from last night with her permission.



I think last night's 4cm baseline pretty much tells us what SU has been struggling with:

- The vast majority of her breaths are significantly flow limited at a baseline of 4cm
- She has a subclinical AHI at that 4cm baseline
- and many flow-volume reductions that would probably score as hypopneas if they didn't reduce so gradually

As an example of that last point, see just how low her flow volumes are between 02:49:05 and 02:49:030----compared to her more normalized volumes to the right. Clinical hypopnea scoring criteria and AHI probably fall short for SU, considering how much time she spends in a state of gradually-reduced volumes thanks to her near-constant flow limitations.

CPAP discomfort/intolerance is SU's biggest battle right now. Ideas, discussion, and encouragement both needed and appreciated...

[SleepingUgly]

Thanks for posting that, -SWS.

- The vast majority of her breaths are significantly flow limited at a baseline of 4cm

Do you know that from the Flow Limitation graph or from eyeballing the Flow graph?

- She has a subclinical AHI at that 4cm baseline

Meaning close to, but not quite AHI of 5, or meaning well below 5?

- and many flow-volume reductions that would probably score as hypopneas if they didn't reduce so gradually

I have to refresh my memory as to the various scoring criteria for hypopneas... I assume it entails a % reduction from just prior to the event...

[-SWS]

- The vast majority of her breaths are significantly flow limited at a baseline of 4cm

Do you know that from the Flow Limitation graph or from eyeballing the Flow graph?

As it turns out both. The S9 flow limitation graph above is continuously "busy" documenting FL from beginning to end. Then, scrolling through your flow graph's bottom line, I can see that you have ALL classes of flow limitations identified in the reference graph at bottom.

- She has a subclinical AHI at that 4cm baseline

Meaning close to, but not quite AHI of 5, or meaning well below 5?

Meaning an AHI below 5.

- and many flow-volume reductions that would probably score as hypopneas if they didn't reduce so gradually

I have to refresh my memory as to the various scoring criteria for hypopneas... I assume it entails a % reduction from just prior to the event...

You have some humdinger flow reductions that reduced very slowly. When they reduce very slowly that way, they don't score----percent-wise----as significant reductions against "just prior" baseline as you put it. So they're not hypopneas when judged against such a narrow, running baseline---despite being humdinger flow reductions.

SU, you have comparatively few normal breaths (Class 1 below) at your 4cm baseline. Most of your breaths at a 4cm baseline are Class 2 through Class 7 flow limitations shown at bottom:

[-SWS]

- and many flow-volume reductions that would probably score as hypopneas if they didn't reduce so gradually

I have to refresh my memory as to the various scoring criteria for hypopneas... I assume it entails a % reduction from just prior to the event...

You have some humdinger flow reductions that reduced very slowly. When they reduce very slowly that way, they don't score----percent-wise----as significant reductions against "just prior" baseline as you put it. So they're not hypopneas when judged against such a narrow, running baseline---despite being humdinger flow reductions.

Below is an example:


That's a heck of a flow reduction... and it lasted for nearly 20 seconds. Yet the flow reduction was so very gradual, that it never met % criterion against running baseline---since that baseline ALSO gradually plummeted. So it's not a hypopnea by definition. Ironically some scored hypopneas don't look nearly that bad.

[ozij]

This brings up 2 questions the we need data on:
How high does the APAP go if you let respond to those flow limitations the way it is programmed to? No saying this is a preferred therapy mode, just wondering about the facts.
and:
Whe the pressure is higher, do you see any change in the flow limitations - do some breaths eventually round out?

A third question: Do you have the same flow limitations when you're awake?

Unfortunately I got a mark from the bottom of the mask between my nose and lip that lasted all day! I am thinking of trying nasal pillows tonight. Not sure what I'll set it to... get a 4cm baseline, or crank it up a bit, perhaps.

At a pressure of 4.0???
I wonder if it was an allergic skin response, not a pressure sore. Did you soak the mask (or at least its cushion) in warm soapy water warm for 30 to 45 minutes before using it? That was recommended by Respironics reps in talkaboutsleep years ago -- and it sure solved red mark problems for me.

Since you've been doing a lot of sleeping withoug cpap, if it were me I would leave the pressure as is (raise to 5 at most), and focus my attention on very careful and systematic problem solving /habituation in the area of mask comfort: including trying different pillows, and different ways of routing the hose.

SU, what have you tried in order to make your masks more comfortable? Your collection of wounds makes it sound like you may need some advice in that direction.

[kteague]

Sure hope you get things sorted out. Since I'm not of much technical help, I'll just try to entertain you with a link to an old thread with several revised song lyrics, Including On The Road Again...

viewtopic.php?f=1&t=14401&st=0&sk=t&sd= ... o+REM+song

[-SWS]

Sure hope you get things sorted out. Since I'm not of much technical help, I'll just try to entertain you with a link to an old thread with several revised song lyrics, Including On The Road Again...

viewtopic.php?f=1&t=14401&st=0&sk=t&sd= ... o+REM+song

Since you've been doing a lot of sleeping withoug cpap, if it were me I would leave the pressure as is (raise to 5 at most), and focus my attention on very careful and systematic problem solving /habituation in the area of mask comfort: including trying different pillows, and different ways of routing the hose.

SU, what have you tried in order to make your masks more comfortable? Your collection of wounds makes it sound like you may need some advice in that direction.

I agree. This is where SU needs all the help, advice, and ideas she can get...

[idamtnboy]

At least my song was not deleted! Whew! Dodged a bullet there...

SU, please check your PMs.

[SleepingUgly]

Did you soak the mask (or at least its cushion) in warm soapy water warm for 30 to 45 minutes before using it? That was recommended by Respironics reps in talkaboutsleep years ago -- and it sure solved red mark problems for me.

Do you mean soak it for 30 to 45 minutes nightly? And then it's somewhat wet when you put it on?

[SleepingUgly]

Ahh, I see my original post is back. Thanks to admin for restoring it.

Whe the pressure is higher, do you see any change in the flow limitations - do some breaths eventually round out?

When the pressure is higher, the Flow Limitation graph looks less like wild scribbles.

A third question: Do you have the same flow limitations when you're awake?

This is a good question. I am not sure the answer. I tend to read in bed with the mask before I turn out the light, so I'm recording awake time, but I just don't know if the graphs are saying that I have FLs or just showing erratic breathing that's more common when someone is awake. -SWS?

Since you've been doing a lot of sleeping withoug cpap, if it were me I would leave the pressure as is (raise to 5 at most), and focus my attention on very careful and systematic problem solving /habituation in the area of mask comfort: including trying different pillows, and different ways of routing the hose.

Last night I tried the Activa-LT on 5cm and was repeatedly awakened by air escaping my mouth in little blips (for lack of a better word). I'm surprised because I've worn it at higher pressures than that without that occurring. I ended up taking the mask off after about 3 hours of this. After noon I'll upload the data and see if it also records the leaks that I was suspecting were occurring through my mouth.

I've been debating whether to try nasal pillows again now that I can breathe through my nose. I haven't decided if I should stick with the Activa-LT for now, or make the switch to pillows. I don't think I can tolerate the pillows at a very low pressure, but I could try and see.

SU, what have you tried in order to make your masks more comfortable? Your collection of wounds makes it sound like you may need some advice in that direction.

When I was using pillows I used Ayr saline gel and concluded that Lansinoh is better. With FFMs, which I'm not interested in at the moment, I used a wide variety of bridge of the nose protection tapes, Remzzzs, Padacheek nose bridge protector, etc. I think I should be able to get the Activa-LT to work without needing nose bridge protection, as I have before. I probably can get the Swift LT for Her to work again, although I may have to endure sores in my nostrils until I get used to it again (at least that's what I had to deal with the first time around). Now that I've had surgery, it's possible I may be able to breathe with just nasal pillows, if I can get them not to leak (my nostrils are not symmetrical). I think the Activa LT and the Swift LT for Her are my two best bets right now, as I've had some success with each in the past.

Thanks for all the help, Everyone!

[KimberlyM]

Ahh, I see my original post is back. Thanks to admin for restoring it.

Whe the pressure is higher, do you see any change in the flow limitations - do some breaths eventually round out?

When the pressure is higher, the Flow Limitation graph looks less like wild scribbles.

A third question: Do you have the same flow limitations when you're awake?

This is a good question. I am not sure the answer. I tend to read in bed with the mask before I turn out the light, so I'm recording awake time, but I just don't know if the graphs are saying that I have FLs or just showing erratic breathing that's more common when someone is awake. -SWS?

Since you've been doing a lot of sleeping withoug cpap, if it were me I would leave the pressure as is (raise to 5 at most), and focus my attention on very careful and systematic problem solving /habituation in the area of mask comfort: including trying different pillows, and different ways of routing the hose.

Last night I tried the Activa-LT on 5cm and was repeatedly awakened by air escaping my mouth in little blips (for lack of a better word). I'm surprised because I've worn it at higher pressures than that without that occurring. I ended up taking the mask off after about 3 hours of this. After noon I'll upload the data and see if it also records the leaks that I was suspecting were occurring through my mouth.

I've been debating whether to try nasal pillows again now that I can breathe through my nose. I haven't decided if I should stick with the Activa-LT for now, or make the switch to pillows. I don't think I can tolerate the pillows at a very low pressure, but I could try and see.

SU, what have you tried in order to make your masks more comfortable? Your collection of wounds makes it sound like you may need some advice in that direction.

When I was using pillows I used Ayr saline gel and concluded that Lansinoh is better. With FFMs, which I'm not interested in at the moment, I used a wide variety of bridge of the nose protection tapes, Remzzzs, Padacheek nose bridge protector, etc. I think I should be able to get the Activa-LT to work without needing nose bridge protection, as I have before. I probably can get the Swift LT for Her to work again, although I may have to endure sores in my nostrils until I get used to it again (at least that's what I had to deal with the first time around). Now that I've had surgery, it's possible I may be able to breathe with just nasal pillows, if I can get them not to leak (my nostrils are not symmetrical). I think the Activa LT and the Swift LT for Her are my two best bets right now, as I've had some success with each in the past.

Thanks for all the help, Everyone!

I think nasal pillows may be your answer. I have trouble sleeping with any of the regular nasal masks. I use the Swift LT with O-rings, as recommended by another member here. If you get sores in your nose because you feel you have to have the pillows stuffed into your nose a bit, you might try the O-rings. It makes the base of the pillow more rigid so the pillow stays put and I can pull it away from my face and put it back more lightly. They seem to stay well that way without being too far into my nose. I hope you find relief soon!