New to OSA and CPAP therapy - help!

[SandSurfer]

I was diagnosed with OSA last year, and have been meaning to post here for some time, but I felt like I had a million questions, lots of data, should do more research on my own first, etc. Hopefully by making a short intro post, I can get over that hump and start getting some thoughts and feedback from you guys.

I am in my late 20s and not overweight, so I don't seem like an obvious risk category - except my father and at least one of my brothers also has sleep apnea. Upon getting reports that my breathing was stopping completely in the middle of the night, I got a home study done, and I came up with "mild" OSA with an AHI of 10.

The problem is that it feels anything but mild. I have been tracking many variables over the years, and I'm seeing clear declines in a number of areas. I sleep a full hour more per night than I used to, and still don't wake up feeling rested, ever. My productivity is down to something like a third of my previous peak. Mood is clearly much worse. Various biomarkers are getting more and more out of line... Getting the sleep study at least gave me a diagnosis that seemed to fit with my observed symptoms, and gave me hope for a solution.

So I went on CPAP... and it feels like it hardly makes a difference. AHI scores tend to be in the 5 range on average, with a lot of variation, which suggests some amount of improvement. And those apneas are being classified as open airway, which is quite odd (and my O2 sat doesn't seem to fall during them either), and it doesn't obviously correspond to mask leaks or anything else. In practice I find the mask uncomfortable to wear, and routinely pull it off during the night. Maybe it kinda sorta helps - it does seem like on nights where I give up and eschew it completely, I do wake up even more groggy than usual. But at the very least, it's no silver bullet, and I have very little desire to continue doing it when I don't see any obvious benefit.

I'm considering a number of possible things:
-give CPAP a very serious try, don't let myself ever sleep without it, and hope it shows results someday
-try the dental appliance, it could plausibly be a tongue issue, why not
-I sleep on my back every night, have as long as I can remember, and I hate the idea of giving that up... yet maybe that's the magic bullet I need?
-surgery... I love permanent solutions... but it seems like this is rarely effective, and no one can figure out which surgeries to give which people
-or plenty of other things out there: muscle exercises, etc.

I think the biggest problem is simply that A) I don't have much energy left to do more research and experimentation, given that I work full time and support a young family on top of wrestling with this, and B) I don't see much evidence that anything is particularly effective, and I don't know if I'd see enough of a difference in that case to really believe in something enough to stick with it. I confess that I'm feeling a bit hopeless and defeated by the whole process, and would love to get some additional support and insight. I'm not even really sure that posting here will help, but at least it might get a conversation started, and give me some idea of how to proceed.

I'm currently using CPAP most nights, for about half the night or so. I've seen one ENT surgeon and getting a second opinion in a couple weeks. Would be happy to post SleepyHead graphs or whatever if that would be useful.

Let me know if anyone has thoughts or ideas, and thanks in advance!

[Elle]

I wonder if trying a different mask would help? Since you admit to not really having been totally compliant I think it is worth it to give it a good solid try.

[Julie]

Have you tried moving your pressures up by a couple of cms to see if it helps? Your settings may just not be ideal (too often are not even put at the prescribed ones but left open to default machine settings). And do make an effort to stay off your back if you can.

[kaiasgram]

NO raising pressure at this time, OP said his events are clear airway.

Welcome. I think the first step for you would be to see if your CPAP therapy can be improved. First step is to list your equipment like others have in their signature boxes. Then, some SleepyHead graphs would be a good next step. You say that most of your events are clear airway apneas and sometimes we can get some ideas by seeing how they look on the graphs (e.g., scattered or clustered). Also let us know your pressure(s) and the specific discomforts with the mask and machine.

Hovering around 5 does not sound like optimal therapy, so I think examining your therapy data makes sense.

[SandSurfer]

I first tried a nasal pillow, but I have trouble breathing through my nose most of the time (one thing I might correct via surgery), so switched to the AirFit F10 mask within two nights. I'm using the ResMed S9.

I'd be much more likely to give it a solid try if I had any confidence that it was doing anything, anything at all...

I'm certainly open to better mask suggestions!

[Pesser]

It looks like you have the same problem as I have. I've been on XPAP for more than a year. I get 6 hours per night, seldom more; I am forced to nap during the day. Very sleep before my naps. I'm middle aged and I have had this since I was 6.....whatever it is. I feel better with XPAP; finally but still sleepy.

[Pugsy]

I'm currently using CPAP most nights, for about half the night or so.

So...tell us just how many "most" nights are and how many hours is "half the night"?
And let me ask you a question...if you were diabetic and you were supposed to take 40 units daily....how well do you think it would work if you took it "most" days at 20 units instead of 40 units?

How many hours of sleep do you get total?
Are those hours fragmented with a lot of wake ups? If so, approximately how often?
Do you take any meds of any kind, even OTC? and if so, what?

[Enchanter]

I was diagnosed with OSA last year, and have been meaning to post here for some time, but I felt like I had a million questions, lots of data, should do more research on my own first, etc. Hopefully by making a short intro post, I can get over that hump and start getting some thoughts and feedback from you guys.

I am in my late 20s and not overweight, so I don't seem like an obvious risk category - except my father and at least one of my brothers also has sleep apnea. Upon getting reports that my breathing was stopping completely in the middle of the night, I got a home study done, and I came up with "mild" OSA with an AHI of 10.

The problem is that it feels anything but mild. I have been tracking many variables over the years, and I'm seeing clear declines in a number of areas. I sleep a full hour more per night than I used to, and still don't wake up feeling rested, ever. My productivity is down to something like a third of my previous peak. Mood is clearly much worse. Various biomarkers are getting more and more out of line... Getting the sleep study at least gave me a diagnosis that seemed to fit with my observed symptoms, and gave me hope for a solution.

So I went on CPAP... and it feels like it hardly makes a difference. AHI scores tend to be in the 5 range on average, with a lot of variation, which suggests some amount of improvement. And those apneas are being classified as open airway, which is quite odd (and my O2 sat doesn't seem to fall during them either), and it doesn't obviously correspond to mask leaks or anything else. In practice I find the mask uncomfortable to wear, and routinely pull it off during the night. Maybe it kinda sorta helps - it does seem like on nights where I give up and eschew it completely, I do wake up even more groggy than usual. But at the very least, it's no silver bullet, and I have very little desire to continue doing it when I don't see any obvious benefit.

I'm considering a number of possible things:
-give CPAP a very serious try, don't let myself ever sleep without it, and hope it shows results someday
-try the dental appliance, it could plausibly be a tongue issue, why not
-I sleep on my back every night, have as long as I can remember, and I hate the idea of giving that up... yet maybe that's the magic bullet I need?
-surgery... I love permanent solutions... but it seems like this is rarely effective, and no one can figure out which surgeries to give which people
-or plenty of other things out there: muscle exercises, etc.

I think the biggest problem is simply that A) I don't have much energy left to do more research and experimentation, given that I work full time and support a young family on top of wrestling with this, and B) I don't see much evidence that anything is particularly effective, and I don't know if I'd see enough of a difference in that case to really believe in something enough to stick with it. I confess that I'm feeling a bit hopeless and defeated by the whole process, and would love to get some additional support and insight. I'm not even really sure that posting here will help, but at least it might get a conversation started, and give me some idea of how to proceed.

I'm currently using CPAP most nights, for about half the night or so. I've seen one ENT surgeon and getting a second opinion in a couple weeks. Would be happy to post SleepyHead graphs or whatever if that would be useful.

Let me know if anyone has thoughts or ideas, and thanks in advance!

Man I feel for you. I feel for you. I have not done Cpap yet but am aware of the possibility that I might not feel it either. I still have to try though. And believe. You as well. We gotta keep on trying. I hope this thread gets awareness. Because all these people who aren't getting the benefits, we gotta figure out why that may be. The reasons can vary from person to person. But I hope everyone finds their solution.

[Enchanter]

It looks like you have the same problem as I have. I've been on XPAP for more than a year. I get 6 hours per night, seldom more; I am forced to nap during the day. Very sleep before my naps. I'm middle aged and I have had this since I was 6.....whatever it is. I feel better with XPAP; finally but still sleepy.

Pesser do you take caffeine? What would happen if you took caffeine or a tonic herb? Would you still feel sleepy?

[robysue]

I'm currently using CPAP most nights, for about half the night or so.

So...tell us just how many "most" nights are and how many hours is "half the night"?
And let me ask you a question...if you were diabetic and you were supposed to take 40 units daily....how well do you think it would work if you took it "most" days at 20 units instead of 40 units?

How many hours of sleep do you get total?
Are those hours fragmented with a lot of wake ups? If so, approximately how often?
Do you take any meds of any kind, even OTC? and if so, what?

+1

SandSurfer,

Pugsy has asked you some very important questions. And she's also drawn an important and appropriate analogy. CPAP is a full time therapy: You have to use it every night and you have to use all night long. If you don't do that, then most likely you will never feel much better than you did before you started therapy.

It's ok to take baby steps towards becoming a full time PAPer. But you do need to keep working on it. Most people start to see some real improvement several weeks to a few months after they are using the CPAP machine every night, all night long. A few people are lucky enough to see improvement within a week or two of full time PAPing. And some people are unlucky and it takes them many months to start to notice any difference even though they are full time PAPers.

[robysue]

Man I feel for you. I feel for you. I have not done Cpap yet but am aware of the possibility that I might not feel it either. I still have to try though. And believe. You as well. We gotta keep on trying. I hope this thread gets awareness. Because all these people who aren't getting the benefits, we gotta figure out why that may be. The reasons can vary from person to person. But I hope everyone finds their solution.

Enchanter,

The most obvious reason the OP is not "getting the benefits" of CPAP is that the OP is only using CPAP part-time. As in, the OP says he uses it "most nights" for about "half the night". For most people, that's not good enough. To really benefit from CPAP, you have to use it every night, all night long.

And CPAP is not a magic bullet: Almost no one feels better right away. It take time and effort to really learn how to sleep with a six foot hose on your nose. And for some people it takes a lot longer and requires a lot more effort. But until you are sleeping well with the CPAP every night, all night long, the CPAP therapy is not really going to make you feel at your best.

And there are a lot of common problems that new CPAPers face. Forums like this exist to help the newbies realize that they are not alone. We were all newbies once. And we all had our trials and tribulations too. And we want to share what we've learned in order to help people get over the hump.

But until you start using a CPAP all night, every night, you won't feel your best. And there's no way around that fact.

[Enchanter]

Man I feel for you. I feel for you. I have not done Cpap yet but am aware of the possibility that I might not feel it either. I still have to try though. And believe. You as well. We gotta keep on trying. I hope this thread gets awareness. Because all these people who aren't getting the benefits, we gotta figure out why that may be. The reasons can vary from person to person. But I hope everyone finds their solution.

Enchanter,

The most obvious reason the OP is not "getting the benefits" of CPAP is that the OP is only using CPAP part-time. As in, the OP says he uses it "most nights" for about "half the night". For most people, that's not good enough. To really benefit from CPAP, you have to use it every night, all night long.

And CPAP is not a magic bullet: Almost no one feels better right away. It take time and effort to really learn how to sleep with a six foot hose on your nose. And for some people it takes a lot longer and requires a lot more effort. But until you are sleeping well with the CPAP every night, all night long, the CPAP therapy is not really going to make you feel at your best.

And there are a lot of common problems that new CPAPers face. Forums like this exist to help the newbies realize that they are not alone. We were all newbies once. And we all had our trials and tribulations too. And we want to share what we've learned in order to help people get over the hump.

But until you start using a CPAP all night, every night, you won't feel your best. And there's no way around that fact.

Is that right? But wouldn't he have seen some benefit just wearing it for a little while? Because by increasing your oxygen you would think you'd feel a difference. How long does it usually take to see benefits?

[robysue]

But until you start using a CPAP all night, every night, you won't feel your best. And there's no way around that fact.

Is that right? But wouldn't he have seen some benefit just wearing it for a little while? Because by increasing your oxygen you would think you'd feel a difference. How long does it usually take to see benefits?

No, it usually doesn't work that way. Look at what Pugsy said about diabetes: If you were an insulin dependent diabetic, do you believe that taking half your insulin on most days would really manage to make a big enough difference in your blood sugar for you "get better"?

If you are only using CPAP part time, the part of the night when you are NOT using it is filled with apneas---the same kind of apneas your pre-CPAP sleep was filled with. And the body will remember that apnea filled sleep with the O2 desats and multiple arousals because that sleep is really, really bad sleep.

We can't function on a half-night of decent sleep. And if we only use the CPAP for half the night, then at best we get a half-night of decent sleep and a half-night of horrible sleep. And because we can't function on a half-night of decent sleep, we still feel pretty rotten in the morning if we only use the CPAP for half the night.

[robysue]

How long does it usually take to see benefits?

A lucky few see a real improvement in terms of how they feel after a week of full-time PAPing---as in using the machine every night, all night long.

Most people start to notice an improvement in a few weeks to a couple of months---as long as they are using the CPAP all night, every night.

Some people don't notice much improvement until they've been PAPing full time (as in all night, every night) for several months to as long as a year. And a few unlucky people never see much improvement in terms of how they feel.

Moreover, most people never wake up one morning singing, "Gloria Hallelujah! I feel GREAT today!"

Rather, the improvement that people feel is usually gradual. Sometimes it's so gradual that people miss it---unless they're keeping a sleep journal of some sort. But eventually you start to realize that you do have more energy than you used to. And the brain fog has lifted and it's easier to concentrate on what needs to be done. And you're not as short tempered as you used to be---you have more patience and you're just not as grumpy. You can't point to when you started to feel better, but you know that you are feeling better.

For many people the first sign they're benefiting from CPAP is that they don't wake up needing to go to the bathroom several times a night. For some people, they start noticing that they're waking up with fewer morning headaches. For me? About six months after starting CPAP therapy when I was deeply involved in the First War on Insomnia I started noticing the phrase, "Woke up with no hand and foot pain this morning" was appearing in my sleep log several times a week. That was the first sign that PAPing was doing me some good. And if I hadn't been keeping the sleep log, I don't think I would have noticed that very subtle difference.

[Enchanter]

How long does it usually take to see benefits?

A lucky few see a real improvement in terms of how they feel after a week of full-time PAPing---as in using the machine every night, all night long.

Most people start to notice an improvement in a few weeks to a couple of months---as long as they are using the CPAP all night, every night.

Some people don't notice much improvement until they've been PAPing full time (as in all night, every night) for several months to as long as a year. And a few unlucky people never see much improvement in terms of how they feel.

Moreover, most people never wake up one morning singing, "Gloria Hallelujah! I feel GREAT today!"

Rather, the improvement that people feel is usually gradual. Sometimes it's so gradual that people miss it---unless they're keeping a sleep journal of some sort. But eventually you start to realize that you do have more energy than you used to. And the brain fog has lifted and it's easier to concentrate on what needs to be done. And you're not as short tempered as you used to be---you have more patience and you're just not as grumpy. You can't point to when you started to feel better, but you know that you are feeling better.

For many people the first sign they're benefiting from CPAP is that they don't wake up needing to go to the bathroom several times a night. For some people, they start noticing that they're waking up with fewer morning headaches. For me? About six months after starting CPAP therapy when I was deeply involved in the First War on Insomnia I started noticing the phrase, "Woke up with no hand and foot pain this morning" was appearing in my sleep log several times a week. That was the first sign that PAPing was doing me some good. And if I hadn't been keeping the sleep log, I don't think I would have noticed that very subtle difference.

Interesting. For me, hopefully I'll notice that I no longer feel what I feel.