Six months in: Still feel awful

[robysue]

I was diagnosed in January with an RDI of 11.7,
...
A curious thing is that in my original study, my actual AHI was only around 1.5. The rest of the events were RERAs, meaning that my breathing didn't actually stop -- it was just sufficiently difficult to breathe that I briefly aroused from sleep. This leads to sleep fragmentation, and subsequent fatigue.

So you're problem is likely UARS rather than OSA. Does your sleep doctor recognize UARS as its own problem----separate but related to OSA?

I realize that the Airsense can try to categorize some sorts of events as RERAs, but without recording the actual EEG, it can't know, and based on sleepyhead data, it (almost) never records RERAs for me.

It is very likely that your machine is not scoring very many RERAs because at your current pressure, the RERAs have indeed been eliminated. But your sleep has not improved because of other sleep problems, including spontaneous arousals (i.e. non-respiratory effort related arousals), some of which may be triggered by your discomfort caused by the CPAP, and nightmares.

But in addition to *respiratory* related arousals, I also get CPAP-related arousals. I have to wear a chin strap to keep my mouth closed, otherwise air leaks out of my mouth and arouses me -- but the chinstrap gets tangled in my hair, catches on the pillow, slides around (despite being as tight as is comfortable), and causes frequent arousals. I get a lot of air swallowing and belching during the night which arouses me (again, we've tried different pressures, APAP, etc, and this never resolved). Also, the pillows are uncomfortable and irritate my nose, which wakes me up at night. I use lanolin, and have experimented with everything from the lightest coat to slathering up, and my nose skin still rubs raw (it's constantly red and inflamed).

It sounds to me like your respiratory related arousals have disappeared, only to be replace by a whole lot of CPAP-related arousals.

I understand and sympathize: My first six months of PAPing were absolutely miserable, and it was all due to CPAP-related discomfort, CPAP-related arousals, and, in my case, a profoundly difficult battle with CPAP-related insominia.

I think the key idea here is that you need to increase your comfort. Some of it is relatively straightforward and some is more difficult. Let's look at your issues one at a time:

I have to wear a chin strap to keep my mouth closed, otherwise air leaks out of my mouth and arouses me -- but the chinstrap gets tangled in my hair, catches on the pillow, slides around (despite being as tight as is comfortable), and causes frequent arousals.

My advice is: Ditch the chinstrap. It is causing far more problems than it is fixing for you.

You say you need it because otherwise air leaks out of your mouth .... It's worth experimenting with a soft cervical collar rather than a chin strap. It's worth experimenting with mouth taping. Heck, it's even worth using the CPAP for a night or two (or even a week or two) just to establish how bad the mouth leak problem is: It could be that it's not anywhere as bad as you think it is.

You can also try to train your tongue to stay on the top of your mouth while you are falling asleep in the hopes that it will stay there after you fall asleep.

I get a lot of air swallowing and belching during the night which arouses me (again, we've tried different pressures, APAP, etc, and this never resolved).

Aerophagia, or air-in-the-stomach, problems were a major cause of my CPAP-induced misery and insomnia. It got so bad that at the end of 4 months my PA switched me to a bi-level, which took a major edge off the problem.

Switching to a very tight Auto Bi-Pap range that was not as optimal (in terms of eliminating all my respiratory related events) but was low enough to prevent the worst of the aerophagia helped. But doing cognitive behavior therapy for insominia (CBT-I) to get my sleep latency reduced from 45+ minutes to less than 10 minutes was equally crucial. In my case: If I can get to sleep at the beginning of the night in less than 10 minutes, then aerophagia is usually not much of a problem any more. If it takes me more than 25 minutes to get to sleep, then even now (after almost 7 years of PAPing) I'm at high risk of having a lot of aerophagia and a miserable night.

So you might want to talk to your doctor about whether a switch to bi-level or auto bi-level is something that is worth considering.

Also, the pillows are uncomfortable and irritate my nose, which wakes me up at night. I use lanolin, and have experimented with everything from the lightest coat to slathering up, and my nose skin still rubs raw (it's constantly red and inflamed).

Sounds like you may have the headgear too tight. Or you may have the nasal pillows at the wrong angle. Or both. Re-read the fitting instructions for your mask and look for videos that show how your mask is supposed to be fitted to your face.

Also your skin could be very sensitive to blowing air and is chapping due to airflow bouncing back into your face. Again, I've fought this battle: My first winter of PAPing, I had chapped lips and nares that made me look awful. And I felt even worse than I looked.

What helped me was a combination of things:

• Badger Balm for lips. I used it (as well as the lanolin) on my lips and nostrils. The Badger Balm seemed to work better for me. I continue to use it most nights on my lips.
• A pillow cozy from Padacheek. This keeps the silicone from touching anything except for the nostrils themselves.
• Paying careful attention to where the exhaust flow is going. My first mask, the Swift FX, has a really powerful jet blast of exhaust venting. The P10's diffused exhaust flow is much easier to deal with. But with that FX in particular, I had to be sure that the exhaust flow was not bouncing back into my face and lips when I was trying to get to sleep.
• Staying well hydrated during the daytime. Dehydration makes the nasal and lip irritation much worse. And prolongs the healing.

I purchased an extra nasal mask (Resmed N20) to try to avoid the nasal irritation from the pillows out of pocket (insurance had already covered the pillows), but I can't tolerate using it. I've worked with the DME to try adjusting it multiple different ways, but the nose always pulls the mask so that there is a leak in the top and it blows into my eyes (even though the leak is small enough that Resmed doesn't even register it -- I feel it, and it wakes me up just enough to fragment my sleep).

Hang the hose. If you don't want to invest more money, then run the hose over your headboard. Or rig up a hose hanger with a hook on your wall. Hanging the hose will reduce the tendency of the hose to pull on the mask. And you might find that with less pulling, the mask seals better. And that's true for the nasal pillows mask as well as the nasal mask.

Also, the airflow tickles my nose just enough that I have to wake up every little bit to scratch my nose -- but it's blocked by the mask, so I have to lift it up and away from my face and reach under.

This is an argument for continuing to work on making the nasal pillows mask work for you.

You might try altering the two masks: Wear one of them for as long as you can take it. Then switch to the other one for a while.

All of this adds up to feeling absolutely horrible. All of the time pretty much.

Yep. Been there, done that. But if you stick with it, everything you've complained about is fixable with a bit of effort and trouble shooting. Seriously, every problem you've listed so far is a common problem for new CPAPers. We're here to help you fix them so that you can teach yourself how to sleep with the machine.

But only you can provide the determination to make this work. If you're not willing to tackle the problems one or two at a time, then all the tips and hints and suggestions we make won't help you find that will power you need in order to make this work.

My sleep doctor only cares about the AHI number reported by Resmed, and like I said above, says "you're cured! This is working perfectly for you!" But he doesn't take into account the arousals, be they respiratory or caused by the treatment itself. He expresses sympathy that I don't feel good, but says there's nothing else he can do except for adjusting the CPAP settings, which he's done with no success.

Your sleep doc is not any worse than many other sleep docs are. A lot of them are clueless about how to help a patient who is having trouble adjusting to CPAP therapy. (I was fired as a patient by my first two sleep docs.)

But here again, we can help you if you are willing to listen to our suggestions.

I also suffer from nightmares most nights and wake up shouting and screaming (though I do not have REM behavior disorder -- I just shout with nightmares). The sleep doctor says they're not apnea-related, but other than that has no advice (I tried taking prazosin which helps some people with nightmares, but it didn't help, and only made me more fatigued) except to work with a sleep psychologist, which I did.

I'm not going to quote everything you've said about the nightmares, but I do want to acknowledge they are a significant problem that is separate from your sleep apnea. And they did not start with CPAP, so they're not part of your CPAP-adjustment problems, although the CPAP-adjustment problems may be making them worse.

You need to understand this, however:

Before CPAP, the untreated OSA/UARS and the nightmares were both disturbing your sleep. Now that you are on CPAP, the respiratory events are being prevented (when you can sleep) by your machine, but you've "traded" the respiratory related arousals for CPAP-related arousals. And you still have the nightmares disturbing your sleep as well.

Before you start feeling genuinely well, three things have to happen:

• The respiratory effort related arousals still have to be prevented ---i.e. you still need to use the CPAP.
• The CPAP-related arousals have to be drastically reduced ---i.e. you have to learn how to sleep well with your CPAP. That's a process that you are still struggling with, but it is one that we can help you with.
• The nightmares have to be addressed as their own, separate sleep issue

In regards to dealing with the nightmare issue, you write:

With the sleep psychologist I worked on sleep hygiene, meditation, relaxation, eliminating screens within 3 hours of bedtime, etc. I follow all of the rules, but I still have these micro-arousals every few minutes. I sleep with a Garmin running watch, which uses the accelerometer to track "deep" versus "light" sleep based on movements, and I spend most of every night in "light" sleep, meaning i'm moving around a lot. It also usually records a few periods of being "awake" per night because of moving around a lot to re-position things.

The question is: Are those micro-arousals caused by the nighmares or the CPAP? (They are NOT caused by respiratory related effort, because if they were your CPAP would be reporting events of some sort.)

One thing that it took me a very, very long time to understand was that it is possible to work too hard to try to eliminate every last micro-wake and every last arousal. Part of my CBT-I focused on working on what was reasonable for me to achieve, what was necessary for me to do, and what was impossible for me to do in terms of improving my overall sleep patterns. Part of what I had to do was to learn to NOT obsess over the data concerning the number of wakes and micro arousals.

I have to go, so I'll end this with a series of questions about your sleep and also about your beliefs about your sleep and sleep in general:

1) How many wakes do you actually remember in the morning? I don't mean how many you know happened because the Garmin watch tells you they happened. I mean how many times do you remember waking up on an average night before you consult the watch's data about your sleep.

2) How stable is your sleep schedule? Do you have a regular bedtime and, even more important, a regular wake up time?

3) What do you want your sleep to look like?

4) Are you aware that a person with normal sleep spends as much as 50-60% of the night in light (Stage II) sleep?

5) Are you aware that a person with normal sleep may wake up for a minute or two every 90 minutes or so, usually right after a REM cycle? It's just that a person with normal sleep doesn't remember those post-REM wakes: They wake up just enough to readjust their position and (unconsciously) make sure that everything in their sleep environment is still "ok" and then they go right back to sleep.

6) How long does it take you to get to sleep with all the CPAP-related stuff on your face? How long did it used to take you to get to sleep before you started CPAPing?

[drfaust]

On my nose, when I use my nasal mask. The airflow irritates the skin.

Which airflow do you mean? When the mask is not leaking, there should be no airflow hitting the skin of the nose.

This is with the nasal mask -- not the nasal pillows. With the nasal pillows I get bloody/chafed skin. With the nasal mask (the Airtouch N20) I get airflow irritating my skin, and lots of condensation inside the mask from the humidity from my breath, so that my nose gets wet and I have to wipe it.

[drfaust]

you need to have a full phyiscal with complete labs
then see a board certified SLEEP doctor
forget titration
get a full scope PSG and find out what is going on

then see whatever specialists may be needed

clearly cpap is not working for you
20-40% of users get central apnea
how low does your O2 go
probably not a problem with your low ahi

you may be better off without cpap and the proper medicine to fix your sleeping since your ahi is low and your problem is disturbances

Thanks, but I'm not sure what you mean here. I did have two full PSGs and I see a board certified sleep doctor. That's how I got diagnosed. My SPO2 went down to 83 during both my initial PSG and my titration.

[drfaust]

If you're interested in trying other masks, consider the DreamWear. The hose is at the top of your head, there's nothing to irritate the bridge of the hose or the nostrils, it's easy to reach under to scratch an itch - by far the most non-invasive and comfortable mask I've tried. https://www.cpap.com/productpage/pr-dre ... -pack.html

Thanks! I'll look into this! It's nice that this one has free return insurance, too. My DME only carries three products: The Resmed P10, F10, and F20. I live in a small town right now, and there is no choice, though I'm moving to a large city in a few months, so maybe things will be better.

Anything else besides these three products I have to order myself and pay out of pocket.

[palerider]

you need to have a full phyiscal with complete labs
then see a board certified SLEEP doctor
forget titration
get a full scope PSG and find out what is going on

then see whatever specialists may be needed

clearly cpap is not working for you
20-40% of users get central apnea
how low does your O2 go
probably not a problem with your low ahi

you may be better off without cpap and the proper medicine to fix your sleeping since your ahi is low and your problem is disturbances

Thanks, but I'm not sure what you mean here. I did have two full PSGs and I see a board certified sleep doctor. That's how I got diagnosed. My SPO2 went down to 83 during both my initial PSG and my titration.

see... xxyzx is one of those people who can't manage their own therapy successfully, but thinks they can "advise" everybody else....

my results are usually below 0.5. and I don't think I know as much as he thinks he does.

[suzpigott1]

I concur with others who have recommended the Phillips Dream Station. I love it for its flexibility and have had no problems with it.

[robysue]

if you still feel bad then either you have centrals ==>> mixed complex apnea
or you have other problems

IF drfaust was having a lot of centrals or mixed or complex apnea, then his machine would be recording enough events for the AHI to be elevated. And that does not appear to be the case.

have you had a full physical and labs to see if anything else is wrong

long thyroid can make you tired too

This is a reasonable suggestion: It is important to make sure that there is nothing else wrong.

However, given the fact that drfaust is self reporting very bad sleep, it's reasonable that the daytime fatigue is from sleep deprivation. The question is whether the sleep deprivation is due to the nightmares, the struggle to adjust to CPAP, or something else we don't yet know about.

[tan]

Yes, getting you as comfortable as possible will substantially reduce your wakings. Maybe someone else knows the name of the mask, but I've seen one that is a cushion below the nose rather than pillows in the nose. For inside the nose irritation, sometimes going to a smaller size pillows helps if the anatomy of the nose is such that the tips of the pillow opening are pressed against sensitive tissue. I'm guessing someone will come along and discuss the possibility UARS - did your report make any mention of it...

Of course he has UARS - he clearly stated that in his original post (RDI == 11).

[tan]

I am sorry to read that you are having such a difficult time of it. I am no expert in this area unfortunately. I too tried the P10 mask and could not use it. It caused sores inside my nose and gave me sinus headaches. I am a mouth breather and therefore had to use a chin strap with it. I hated the chin strap. Even with it on as tight as I could tolerate, I was still able to open my mouth which made it useless. Have you tried using a full face mask? I have come to the conclusion that it is the only type of mask I can tolerate. For me it is however a constant battle with pressure marks left from the mask that do not go away. Good luck.

Thanks -- I haven't tried a full face mask, but given my inability to tolerate the nasal mask due to not being able to reach my nose to scratch it, I'm guessing the FFM might run into similar problems. ..

Don't negatively guess and don't wait. A properly treated UARS should provide an almost immediate relief, a week tops. I also have UARS and couldn't tolerate a nasal mask due to irritation. Chinstrap didn't help either. But a full face mask combined with partial mouth taping to prevent jaw from dropping and force air through the nose rather than the mouth worked very well.

[drfaust]

I was diagnosed in January with an RDI of 11.7,
...
A curious thing is that in my original study, my actual AHI was only around 1.5. The rest of the events were RERAs, meaning that my breathing didn't actually stop -- it was just sufficiently difficult to breathe that I briefly aroused from sleep. This leads to sleep fragmentation, and subsequent fatigue.

So you're problem is likely UARS rather than OSA. Does your sleep doctor recognize UARS as its own problem----separate but related to OSA?

Yeah, he does. But he says that the treatment for UARS is still CPAP, so that CPAP is the right way to go. I brought up the point of the machine not documenting the arousals, but he said he's sure that given the low AHI, that the UARS is also being treated.

I realize that the Airsense can try to categorize some sorts of events as RERAs, but without recording the actual EEG, it can't know, and based on sleepyhead data, it (almost) never records RERAs for me.

It is very likely that your machine is not scoring very many RERAs because at your current pressure, the RERAs have indeed been eliminated. But your sleep has not improved because of other sleep problems, including spontaneous arousals (i.e. non-respiratory effort related arousals), some of which may be triggered by your discomfort caused by the CPAP, and nightmares.


It sounds to me like your respiratory related arousals have disappeared, only to be replace by a whole lot of CPAP-related arousals.

I understand and sympathize: My first six months of PAPing were absolutely miserable, and it was all due to CPAP-related discomfort, CPAP-related arousals, and, in my case, a profoundly difficult battle with CPAP-related insominia.

Right. I tell him this and he makes a sympathetic face and says to keep at it.

And glad I'm now the only one. I knew this would take time, but I figured 6 months would be enough time to get used to it.

I think the key idea here is that you need to increase your comfort. Some of it is relatively straightforward and some is more difficult. Let's look at your issues one at a time:

I have to wear a chin strap to keep my mouth closed, otherwise air leaks out of my mouth and arouses me -- but the chinstrap gets tangled in my hair, catches on the pillow, slides around (despite being as tight as is comfortable), and causes frequent arousals.

My advice is: Ditch the chinstrap. It is causing far more problems than it is fixing for you.

You say you need it because otherwise air leaks out of your mouth .... It's worth experimenting with a soft cervical collar rather than a chin strap. It's worth experimenting with mouth taping. Heck, it's even worth using the CPAP for a night or two (or even a week or two) just to establish how bad the mouth leak problem is: It could be that it's not anywhere as bad as you think it is.

You can also try to train your tongue to stay on the top of your mouth while you are falling asleep in the hopes that it will stay there after you fall asleep.

Thanks for the advice. I've tried both taping and polident strips. Polident strips just didn't work (not strong enough, also super gross). Taping both didn't work (air leaking out the corners, puffy cheeks, more swallowed air) and caused panic attacks -- not being able to open my mouth during an arousal and not being able to open my mouth when I vocalize during dreams caused me to wake up panicked. Basically, anything that restricts movement causes panic when I sleep -- I can't sleep with sheets tucked in. My feet *have* to stick out the bottom of the covers or else I wake up thrashing from claustrophobia. It's interesting that I'm not claustrophobic in daily life -- just asleep. It goes along with my nightmares, I think. The Klonopin helps with this a bit.

I get a lot of air swallowing and belching during the night which arouses me (again, we've tried different pressures, APAP, etc, and this never resolved).

Aerophagia, or air-in-the-stomach, problems were a major cause of my CPAP-induced misery and insomnia. It got so bad that at the end of 4 months my PA switched me to a bi-level, which took a major edge off the problem.

Switching to a very tight Auto Bi-Pap range that was not as optimal (in terms of eliminating all my respiratory related events) but was low enough to prevent the worst of the aerophagia helped. But doing cognitive behavior therapy for insominia (CBT-I) to get my sleep latency reduced from 45+ minutes to less than 10 minutes was equally crucial. In my case: If I can get to sleep at the beginning of the night in less than 10 minutes, then aerophagia is usually not much of a problem any more. If it takes me more than 25 minutes to get to sleep, then even now (after almost 7 years of PAPing) I'm at high risk of having a lot of aerophagia and a miserable night.

So you might want to talk to your doctor about whether a switch to bi-level or auto bi-level is something that is worth considering.

He did enable the EPR on my machine, and I'm at a max level of 3. My DME only supplies one machine the Resmed Airsense 10 Autoset, so the EPR maxes out at 3. I could barely sleep before he enabled that, but it took a lot of convincing for him to do that -- he doesn't like using the EPR he says.

Also, the pillows are uncomfortable and irritate my nose, which wakes me up at night. I use lanolin, and have experimented with everything from the lightest coat to slathering up, and my nose skin still rubs raw (it's constantly red and inflamed).

Sounds like you may have the headgear too tight. Or you may have the nasal pillows at the wrong angle. Or both. Re-read the fitting instructions for your mask and look for videos that show how your mask is supposed to be fitted to your face.

The P10 doesn't have adjustable headgear -- it's just a split strap with one strap that goes on top of your head, and one that goes behind. Again, there was no choice at my DME -- only the choice between pillows, nasal, and full face (all resmed). Anything else I pay out of pocket for myself. :-/

Also your skin could be very sensitive to blowing air and is chapping due to airflow bouncing back into your face. Again, I've fought this battle: My first winter of PAPing, I had chapped lips and nares that made me look awful. And I felt even worse than I looked.

What helped me was a combination of things:

• Badger Balm for lips. I used it (as well as the lanolin) on my lips and nostrils. The Badger Balm seemed to work better for me. I continue to use it most nights on my lips.
• A pillow cozy from Padacheek. This keeps the silicone from touching anything except for the nostrils themselves.
• Paying careful attention to where the exhaust flow is going. My first mask, the Swift FX, has a really powerful jet blast of exhaust venting. The P10's diffused exhaust flow is much easier to deal with. But with that FX in particular, I had to be sure that the exhaust flow was not bouncing back into my face and lips when I was trying to get to sleep.
• Staying well hydrated during the daytime. Dehydration makes the nasal and lip irritation much worse. And prolongs the healing.

I'm definitely sensitive, if it wasn't obvious from my litany of issues already I'm also a super light sleeper (unless I take meds, which I try to avoid doing).

The exhaust from the P10 is no problem (not even noticable). From the N20 the exhaust vent doesn't bother me, luckily -- it's just sometimes when I get a leak that the leak wakes me up.

I purchased an extra nasal mask (Resmed N20) to try to avoid the nasal irritation from the pillows out of pocket (insurance had already covered the pillows), but I can't tolerate using it. I've worked with the DME to try adjusting it multiple different ways, but the nose always pulls the mask so that there is a leak in the top and it blows into my eyes (even though the leak is small enough that Resmed doesn't even register it -- I feel it, and it wakes me up just enough to fragment my sleep).

Hang the hose. If you don't want to invest more money, then run the hose over your headboard. Or rig up a hose hanger with a hook on your wall. Hanging the hose will reduce the tendency of the hose to pull on the mask. And you might find that with less pulling, the mask seals better. And that's true for the nasal pillows mask as well as the nasal mask.

Also, the airflow tickles my nose just enough that I have to wake up every little bit to scratch my nose -- but it's blocked by the mask, so I have to lift it up and away from my face and reach under.

This is an argument for continuing to work on making the nasal pillows mask work for you.

You might try altering the two masks: Wear one of them for as long as you can take it. Then switch to the other one for a while.

All of this adds up to feeling absolutely horrible. All of the time pretty much.

Yep. Been there, done that. But if you stick with it, everything you've complained about is fixable with a bit of effort and trouble shooting. Seriously, every problem you've listed so far is a common problem for new CPAPers. We're here to help you fix them so that you can teach yourself how to sleep with the machine.

But only you can provide the determination to make this work. If you're not willing to tackle the problems one or two at a time, then all the tips and hints and suggestions we make won't help you find that will power you need in order to make this work.

My sleep doctor only cares about the AHI number reported by Resmed, and like I said above, says "you're cured! This is working perfectly for you!" But he doesn't take into account the arousals, be they respiratory or caused by the treatment itself. He expresses sympathy that I don't feel good, but says there's nothing else he can do except for adjusting the CPAP settings, which he's done with no success.

Your sleep doc is not any worse than many other sleep docs are. A lot of them are clueless about how to help a patient who is having trouble adjusting to CPAP therapy. (I was fired as a patient by my first two sleep docs.)

But here again, we can help you if you are willing to listen to our suggestions.

Yes -- thank you. I really do appreciate all of the advice here. I did a *lot* of reading on this board when I first got diagnosed and I think I've tried most of the "common" suggestions on this board. I came here because I found the people to be really helpful (like you). I'm obviously willing to keep working at this -- hence why I've stuck with the CPAP despite all of the issues, and why I'm coming here for more suggestions.

I also suffer from nightmares most nights and wake up shouting and screaming (though I do not have REM behavior disorder -- I just shout with nightmares). The sleep doctor says they're not apnea-related, but other than that has no advice (I tried taking prazosin which helps some people with nightmares, but it didn't help, and only made me more fatigued) except to work with a sleep psychologist, which I did.

I'm not going to quote everything you've said about the nightmares, but I do want to acknowledge they are a significant problem that is separate from your sleep apnea. And they did not start with CPAP, so they're not part of your CPAP-adjustment problems, although the CPAP-adjustment problems may be making them worse.

You need to understand this, however:

Before CPAP, the untreated OSA/UARS and the nightmares were both disturbing your sleep. Now that you are on CPAP, the respiratory events are being prevented (when you can sleep) by your machine, but you've "traded" the respiratory related arousals for CPAP-related arousals. And you still have the nightmares disturbing your sleep as well.

Before you start feeling genuinely well, three things have to happen:

• The respiratory effort related arousals still have to be prevented ---i.e. you still need to use the CPAP.
• The CPAP-related arousals have to be drastically reduced ---i.e. you have to learn how to sleep well with your CPAP. That's a process that you are still struggling with, but it is one that we can help you with.
• The nightmares have to be addressed as their own, separate sleep issue

In regards to dealing with the nightmare issue, you write:

With the sleep psychologist I worked on sleep hygiene, meditation, relaxation, eliminating screens within 3 hours of bedtime, etc. I follow all of the rules, but I still have these micro-arousals every few minutes. I sleep with a Garmin running watch, which uses the accelerometer to track "deep" versus "light" sleep based on movements, and I spend most of every night in "light" sleep, meaning i'm moving around a lot. It also usually records a few periods of being "awake" per night because of moving around a lot to re-position things.

The question is: Are those micro-arousals caused by the nighmares or the CPAP? (They are NOT caused by respiratory related effort, because if they were your CPAP would be reporting events of some sort.)

One thing that it took me a very, very long time to understand was that it is possible to work too hard to try to eliminate every last micro-wake and every last arousal. Part of my CBT-I focused on working on what was reasonable for me to achieve, what was necessary for me to do, and what was impossible for me to do in terms of improving my overall sleep patterns. Part of what I had to do was to learn to NOT obsess over the data concerning the number of wakes and micro arousals.

Thanks -- this is a good point. I do need to work on reasonable expectations, that's for sure.

I have to go, so I'll end this with a series of questions about your sleep and also about your beliefs about your sleep and sleep in general:

1) How many wakes do you actually remember in the morning? I don't mean how many you know happened because the Garmin watch tells you they happened. I mean how many times do you remember waking up on an average night before you consult the watch's data about your sleep.

I usually remember between 15-20 wakings. My garmin usually registers 1 or 2 (you basically have to be either thrashing around or get up to pee for it to register you being awake, otherwise it just considers you being in "light" sleep mode). My worst sleep is usually toward the early morning. I tend to have almost no trouble falling asleep, and my first sleep cycle goes really well, but then things just get worse as the night goes on.

2) How stable is your sleep schedule? Do you have a regular bedtime and, even more important, a regular wake up time?

Very stable. This was part 1 of sleep hygiene. The Psychologist originally suggested some sleep restriction. That didn't go well. But I'm in bed at 10:45 and alarm goes of at 7am every day. *every day*.

3) What do you want your sleep to look like?

It's more what I want it to **feel** like. I want to wake up not feeling like I was punched in the face. I want to not have constant headaches. I want to have enough energy to go to work every day, rather than having so many "sick" days due to being so fatigued it's hard to move. I want to stop falling asleep in meetings, falling asleep *when I'm talking to students one-on-one* (I'm a professor). My counselor and psychiatrist both think that sleep is the missing key when it comes to my anxiety issues and that when I get that figured out, that my anxiety will get a lot better, and I agree.

4) Are you aware that a person with normal sleep spends as much as 50-60% of the night in light (Stage II) sleep?

Yep!

5) Are you aware that a person with normal sleep may wake up for a minute or two every 90 minutes or so, usually right after a REM cycle? It's just that a person with normal sleep doesn't remember those post-REM wakes: They wake up just enough to readjust their position and (unconsciously) make sure that everything in their sleep environment is still "ok" and then they go right back to sleep.

Yep! The science nerd in me got me to spend probably over a hundred hours reading sleep journals after my diagnosis, since I wanted to learn exactly what was going on with me, what the issues were, what the data show, etc. I'm probably much better read than your average newbie member around here

6) How long does it take you to get to sleep with all the CPAP-related stuff on your face? How long did it used to take you to get to sleep before you started CPAPing?

About 10-15min. I don't have a problem falling asleep -- it's staying asleep. My sleep onset time is basically no different now than it was before CPAP. It's just that -- like you said above -- I've traded low blood oxygen and RERAs for CPAP-related-arousals.

Thanks so much for your really thorough, thoughtful reply. I greatly appreciate it!!

[drfaust]

have you had a full physical and labs to see if anything else is wrong

long thyroid can make you tired too

I've had thyroid (TSH, T3, T4, and anti-TPO), testosterone (free and total), iron, ferretin, B12, and Vitamin D test. All were normal. The Vit D was on the low-ish end of normal (33.8 with 30-100 being the reference range), but still in the normal range. Everything else was smack dab in the normal range.

[drfaust]

I concur with others who have recommended the Phillips Dream Station. I love it for its flexibility and have had no problems with it.

My DME only dispenses the Resmed Airsense 10 Autoset. If I want something else, I have to pay out of pocket. I live in a small town in Illinois, with only one DME.

I'll be moving to Seattle soon, so there will be more choices. But it's not the actual machine that causes me problems. The Airsense is practically silent.

It's the irritation from the mask that bothers me, and the chinstrap.

Like I've mentioned, the P10 gives me scabs on and in my nose, and when I use the N20 nasal mask, the moisture buildup inside the "cone" over my nose and the airflow irritates my nose so that I constantly wake up to scratch my nose, and lift the mask away to wipe up the moisture. The chin strap gets caught in my hair and tangled up in the head gear from the mask, but if I don't use a chin strap, the pressure from the machine pushes my mouth open and I wake up with air gushing out of my mouth. Taping my mouth shut results in waking up with chipmunk cheeks and with panic attacks when I can't open my mouth (like I said I wake up vocalizing/shouting a lot because of vivid dreams and nightmares that have occurred nightly for years that are unrelated to CPAP).

[karamansongul]

Please reaD THIS.
drgominak
/sleep/vitamin-d-hormone

[drfaust]

Please reaD THIS.
drgominak
/sleep/vitamin-d-hormone

There is no link there -- but like I said, my Vit D is in the normal range, and I take 5000 IUs/day. The doctor doesn't want me taking any more than that.

[karamansongul]

PLEASE GOOGLE THE WORDS AND YOU CAN FIND THE SITE. IT IS NOT ALLOWED TO WRITE WEBSITE. UNFORTUNATELY, YOU VITAMIN D LEVEL IS NOT NORMAL RANGE. IT SHOULD BE BETWEEN 60-80.