Getting to the breaking point

Look, you complained about various things, I made suggestions given the limitations you cited, and now you're PO'd because I haven't given you permission (like it matters to me!) to whine instead of e.g. asking for more info on the suggestions. Sorry I'm not a therapist, just someone else in the same boat we all are here. If the suggestions aren't to your taste, fine, ignore them, but don't blame me.

First I'm sorry that you're no longer feeling as well as you did when you first started PAPing.

Second, I'll try my best to keep what you've said about finances in mind when I make some suggestions.

Let's look at the data you posted:

ddk wrote:

This is summary data, but it shows some important things:

• The AHI is in the target range; so in a "technical" sense, the CPAP is doing it's job, but you are feeling awful in spite of using the PAP.
• You appear to be using an APAP set (almost) wide open with a range of 4-18cm and your 90% pressure is 18cm and your average pressure is between 15 and 16cm.
• The leak problem is significant enough to worry about. Technically the amount of time in Large Leak territory is marginally acceptable since long term it's been under 10%. But it's large enough to bother you, and any any leaks that bother the PAPer are significant.

So here's what I think about your situation and what you might want to try to fix the situation:

First: your therapy is effective in terms of reducing your AHI to normal levels, but you are feeling pretty crappy in spite of that. I know how that feels: I had a horrible and lengthy adjustment period to PAPing myself and it's very frustrating to feel awful when the numbers on paper look good. Sometimes the answer is to just give it more time. No one wants to hear that (certainly I didn't back when I was a newbie), but sometimes that's the case. However, since you mention multiple sleep tests, it's not clear how long you've been PAPing with effective numbers while still feeling awful. It appears that you've been PAPing for over a year now. Can you give us some insight into how long you've been feeling awful while on PAP?

Here's the thing about feeling awful while PAPing with low AHI's: CPAP fixes OSA, but CPAP does not fix bad sleep. And sometimes we need to consider possibilities other than "OSA" for the bad sleep. You might want to keep a sleep log for a few weeks to see if you can tease out whether there's a relationship between the days you feel worst and the nights where there was something obviously bad about the sleep.

Next: Pressure swings from the CPAP itself might be disturbing your sleep---some people are much more sensitive to pressure changes than other people are. I think you need to increase that minimum pressure quite a bit given that your min pressure is 4cm and your average pressure is 15-16cm. Try bumping the min pressure up to 10 or 12 cm if you can stand starting off the night with that much pressure. Fewer pressure swings during the night might lead to you feeling better in the daytime.

Finally: You need to do something about the leaks since they are bothering you. You can't afford to buy a new mask. So help us out here: How old is your mask cushion? How old is your headgear? How often do you wash the mask? How often do you wash the headgear? If you are using a nasal mask or a full face mask, a mask liner might work. If you are using wornout nasal pillows, you might try boiling them for a few minutes. (But I admit, if I only had one set of nasal pillows, I'd be reluctant to do that.)

You say that you'd like to try things like a hose cozy or a hose hanger, but you can't afford them. You may want to jerry-rig some things:

• You can cut holes in old, clean worn out socks and string them along the hose with rubber bands to create a do-it-yourself for-free hose cozy.
• You can run the hose over the headboard as a way of trying to hang the hose. You may also be able to rig up some kind of a hose sling with an old sock or two and a nail or two. You just need to create a loop big enough to run the hose through.
• You can cut mask liners out of worn out tee shirts.

I'm getting a lot of leaks but there's very little I can do to change that. I can't afford a new mask, I can't afford proper hose socks or hangers. All these things have an effect. Cold air is a big one which causes a blocked nose and I can't heat the hose. Mostly it's turning onto my back which I can't seem to prevent either despite trying pillows and even sleeping right at the edge so I have nowhere to turn to.

For "heating the hose"---try running the hose under the covers and next to your body. That does a good job of keeping the air in the hose close to body temperature.

For the back sleeping? I'd just admit that you're a back sleeper and not worry about it: Your AHI is under control even though you are doing some back sleeping. So learn to enjoy sleeping on your back with your CPAP as long as the AHI is under control. The whole point of a quality CPAP titration is to find out what pressure you need to control the OSA when sleeping on your back in REM.

I can't find where you told us what specific machine you are using. We're trying to help, really, but being nasty on your part brings retaliation and less interest to help.

robysue wrote:First I'm sorry that you're no longer feeling as well as you did when you first started PAPing.

Second, I'll try my best to keep what you've said about finances in mind when I make some suggestions.

Let's look at the data you posted:

ddk wrote:

This is summary data, but it shows some important things:

• The AHI is in the target range; so in a "technical" sense, the CPAP is doing it's job, but you are feeling awful in spite of using the PAP.
• You appear to be using an APAP set (almost) wide open with a range of 4-18cm and your 90% pressure is 18cm and your average pressure is between 15 and 16cm.
• The leak problem is significant enough to worry about. Technically the amount of time in Large Leak territory is marginally acceptable since long term it's been under 10%. But it's large enough to bother you, and any any leaks that bother the PAPer are significant.

So here's what I think about your situation and what you might want to try to fix the situation:

First: your therapy is effective in terms of reducing your AHI to normal levels, but you are feeling pretty crappy in spite of that. I know how that feels: I had a horrible and lengthy adjustment period to PAPing myself and it's very frustrating to feel awful when the numbers on paper look good. Sometimes the answer is to just give it more time. No one wants to hear that (certainly I didn't back when I was a newbie), but sometimes that's the case. However, since you mention multiple sleep tests, it's not clear how long you've been PAPing with effective numbers while still feeling awful. It appears that you've been PAPing for over a year now. Can you give us some insight into how long you've been feeling awful while on PAP?

Here's the thing about feeling awful while PAPing with low AHI's: CPAP fixes OSA, but CPAP does not fix bad sleep. And sometimes we need to consider possibilities other than "OSA" for the bad sleep. You might want to keep a sleep log for a few weeks to see if you can tease out whether there's a relationship between the days you feel worst and the nights where there was something obviously bad about the sleep.

Next: Pressure swings from the CPAP itself might be disturbing your sleep---some people are much more sensitive to pressure changes than other people are. I think you need to increase that minimum pressure quite a bit given that your min pressure is 4cm and your average pressure is 15-16cm. Try bumping the min pressure up to 10 or 12 cm if you can stand starting off the night with that much pressure. Fewer pressure swings during the night might lead to you feeling better in the daytime.

Finally: You need to do something about the leaks since they are bothering you. You can't afford to buy a new mask. So help us out here: How old is your mask cushion? How old is your headgear? How often do you wash the mask? How often do you wash the headgear? If you are using a nasal mask or a full face mask, a mask liner might work. If you are using wornout nasal pillows, you might try boiling them for a few minutes. (But I admit, if I only had one set of nasal pillows, I'd be reluctant to do that.)

You say that you'd like to try things like a hose cozy or a hose hanger, but you can't afford them. You may want to jerry-rig some things:

• You can cut holes in old, clean worn out socks and string them along the hose with rubber bands to create a do-it-yourself for-free hose cozy.
• You can run the hose over the headboard as a way of trying to hang the hose. You may also be able to rig up some kind of a hose sling with an old sock or two and a nail or two. You just need to create a loop big enough to run the hose through.
• You can cut mask liners out of worn out tee shirts.

I'm getting a lot of leaks but there's very little I can do to change that. I can't afford a new mask, I can't afford proper hose socks or hangers. All these things have an effect. Cold air is a big one which causes a blocked nose and I can't heat the hose. Mostly it's turning onto my back which I can't seem to prevent either despite trying pillows and even sleeping right at the edge so I have nowhere to turn to.

For "heating the hose"---try running the hose under the covers and next to your body. That does a good job of keeping the air in the hose close to body temperature.

For the back sleeping? I'd just admit that you're a back sleeper and not worry about it: Your AHI is under control even though you are doing some back sleeping. So learn to enjoy sleeping on your back with your CPAP as long as the AHI is under control. The whole point of a quality CPAP titration is to find out what pressure you need to control the OSA when sleeping on your back in REM.

+1 All sounds like excellent advice to me and very do-able, best of luck sorting things out.

Michelle-OH wrote:

robysue wrote:First I'm sorry that you're no longer feeling as well as you did when you first started PAPing.

Second, I'll try my best to keep what you've said about finances in mind when I make some suggestions.

Let's look at the data you posted:

ddk wrote:

This is summary data, but it shows some important things:

• The AHI is in the target range; so in a "technical" sense, the CPAP is doing it's job, but you are feeling awful in spite of using the PAP.
• You appear to be using an APAP set (almost) wide open with a range of 4-18cm and your 90% pressure is 18cm and your average pressure is between 15 and 16cm.
• The leak problem is significant enough to worry about. Technically the amount of time in Large Leak territory is marginally acceptable since long term it's been under 10%. But it's large enough to bother you, and any any leaks that bother the PAPer are significant.

So here's what I think about your situation and what you might want to try to fix the situation:

First: your therapy is effective in terms of reducing your AHI to normal levels, but you are feeling pretty crappy in spite of that. I know how that feels: I had a horrible and lengthy adjustment period to PAPing myself and it's very frustrating to feel awful when the numbers on paper look good. Sometimes the answer is to just give it more time. No one wants to hear that (certainly I didn't back when I was a newbie), but sometimes that's the case. However, since you mention multiple sleep tests, it's not clear how long you've been PAPing with effective numbers while still feeling awful. It appears that you've been PAPing for over a year now. Can you give us some insight into how long you've been feeling awful while on PAP?

Here's the thing about feeling awful while PAPing with low AHI's: CPAP fixes OSA, but CPAP does not fix bad sleep. And sometimes we need to consider possibilities other than "OSA" for the bad sleep. You might want to keep a sleep log for a few weeks to see if you can tease out whether there's a relationship between the days you feel worst and the nights where there was something obviously bad about the sleep.

Next: Pressure swings from the CPAP itself might be disturbing your sleep---some people are much more sensitive to pressure changes than other people are. I think you need to increase that minimum pressure quite a bit given that your min pressure is 4cm and your average pressure is 15-16cm. Try bumping the min pressure up to 10 or 12 cm if you can stand starting off the night with that much pressure. Fewer pressure swings during the night might lead to you feeling better in the daytime.

Finally: You need to do something about the leaks since they are bothering you. You can't afford to buy a new mask. So help us out here: How old is your mask cushion? How old is your headgear? How often do you wash the mask? How often do you wash the headgear? If you are using a nasal mask or a full face mask, a mask liner might work. If you are using wornout nasal pillows, you might try boiling them for a few minutes. (But I admit, if I only had one set of nasal pillows, I'd be reluctant to do that.)

You say that you'd like to try things like a hose cozy or a hose hanger, but you can't afford them. You may want to jerry-rig some things:

• You can cut holes in old, clean worn out socks and string them along the hose with rubber bands to create a do-it-yourself for-free hose cozy.
• You can run the hose over the headboard as a way of trying to hang the hose. You may also be able to rig up some kind of a hose sling with an old sock or two and a nail or two. You just need to create a loop big enough to run the hose through.
• You can cut mask liners out of worn out tee shirts.

I'm getting a lot of leaks but there's very little I can do to change that. I can't afford a new mask, I can't afford proper hose socks or hangers. All these things have an effect. Cold air is a big one which causes a blocked nose and I can't heat the hose. Mostly it's turning onto my back which I can't seem to prevent either despite trying pillows and even sleeping right at the edge so I have nowhere to turn to.

For "heating the hose"---try running the hose under the covers and next to your body. That does a good job of keeping the air in the hose close to body temperature.

For the back sleeping? I'd just admit that you're a back sleeper and not worry about it: Your AHI is under control even though you are doing some back sleeping. So learn to enjoy sleeping on your back with your CPAP as long as the AHI is under control. The whole point of a quality CPAP titration is to find out what pressure you need to control the OSA when sleeping on your back in REM.

+1 All sounds like excellent advice to me and very do-able, best of luck sorting things out.

+ 2 Robysue's responses are always so knowledgeable, caring and right on target!!