Help, red blood cell count up, no energy, long time CPAP user

BBX2125 wrote: ↑

Sun Sep 25, 2022 10:07 am

Have been using a CPAP for about 20 to 25 years currently on my 5th machine a ResMed S11 started out with a ResMed Escape. Both my S10 and S11 history sync to the cloud.

Picked up my new ResMed S11 the first week of August of this year. Have always used the ResMed N20 nasal mask for awhile. The CPAP doctor and DME supplier both looked at my history from my prior machine a ResMed S10 and told me everything looks good and asked if I ever used the my air app told them no however I decided to download it and looking at it I saw that my leak was always high. I thought why didn't my CPAP doctor or DME mentioned this to me during my visits.

I've had dry mouth for a while but never associated with the CPAP and air leak until my wife decided to mention that I really had bad breath I need to do something about it. Searching and searching I found that a air leak out the mouth will cause both dry mouth and bad breath, bingo!

Here come my problems... Talked to my DME supplier about exchanging my N20 mask with a full face mask to take of my problems so I went with a f20 mask. At some point in the night my mouth would open some and the bottom seal of the Mask would be at the bottom of my lower lip, got a chin strap couldn't sleep with it try to different chin strap didn't work so good for what I remember. After trying and failure tried a different full face mask then a hybrid mask, then duct tape then duct tape and chin strap then my N20 mask, duct tape and chin strap last night perfect score 100 still feel like crap.

Throat a litte dry, humidifier and hose set on auto.

Also in the late afternoon if I sit down to get on my phone I start fighting to stay awake, it reminds me of a long time ago when I did not have a CPAP machine and I would fall asleep in meetings.

Sometime during this, my doctor did blood work, complaining about being tired. My blood count ( CBC ) shows my red blood count is high told me to donate blood to get it down told me to stop my testosterone therapy and then recheck blood. Doctor said red blood count up from a combination of testosterone therapy and sleep apnea.

With just my N20 mask and the mouth leak I would feel okay.

I haven't felt refreshed and energized in a long time and wonder if something else could be going on with my sleep. I really would like to wake up and feel energized and refreshed throughout the day like I used to.

• Think about how you fit the mask at the beginning of the night. Try to fit the mask while lying down in the position you intend to sleep. And try to fit it at your full pressure instead of the beginning ramp pressure.
• See if Biotene mouthwash or gel or Xylimelt Tabs helps with the dry mouth. This won't fix the leaks, but it could relive your dry mouth, which may help make you feel better.
• See if you can train your tongue to stay in the right position. When a person is breathing normally through his/her nose, his/her tongue is usually touching the top of the back of the front teeth (the gum line) and the top of the mouth. People who breathe through their nostrils automatically put their tongue in that position whenever they are at rest or when sleeping. And if the tongue is in that position when you are sleeping, it usually prevents air from getting into the mouth in the first place. And that, in turn will help keep the mouth shut and the leaks to a minimum.
• Deal with nasal congestion. If you have problems with a stuffy nose, you are more likely to start breathing through your mouth. So if your nose is congested, think about taking an antihistamine if allergies are the problem. Or try a saline nasal spray or a neti-pot before going to bed. (Long term use of decongestant nasal sprays, unfortunately, can lead to serious problems with rebound nasal congestion---your nose is more stopped up after the spray wears off than it was before you used the spray in the first place.)
• Consider sleeping with a soft cervical collar. That may be more comfortable than the chin straps you've already tried and found difficult to sleep with, but it may also provide just enough resistance to help prevent your mouth from dropping open.

I haven't felt refreshed and energized in a long time and wonder if something else could be going on with my sleep.

robysue1 wrote: ↑

Sun Sep 25, 2022 1:11 pm

BBX2125,

Welcome to the forum!

Thank you.

You write:

BBX2125 wrote: ↑

Sun Sep 25, 2022 10:07 am

Have been using a CPAP for about 20 to 25 years currently on my 5th machine a ResMed S11 started out with a ResMed Escape. Both my S10 and S11 history sync to the cloud.

Can you tell us exactly what model your current ResMed is? If I recall correctly, some of the new ResMeds have a slot for an SD card, and some don't. We need to know which model you have in order to tell if you (and hence us) can actually get at your full efficacy data, which includes much more than is simply reported to the machine's LCD and the cloud's website.

Picked up my new ResMed S11 the first week of August of this year. Have always used the ResMed N20 nasal mask for awhile. The CPAP doctor and DME supplier both looked at my history from my prior machine a ResMed S10 and told me everything looks good and asked if I ever used the my air app told them no however I decided to download it and looking at it I saw that my leak was always high. I thought why didn't my CPAP doctor or DME mentioned this to me during my visits.

The short answer: Both the CPAP doctor and the DME are more concerned with usage data (Are you using the machine > 4 hours every night) than they are with efficacy data: They only get paid by your insurance if they can prove you're using the machine. But they get paid as long as you're using the machine---regardless of whether the actual therapy is effective or not.

In other words, most sleep (CPAP) doctors and most DMEs never look at anything other than the usage data unless a patient brings up a specific problem that might be connected to something not being quite right with therapy.

So if you never mentioned leaks waking you up, or seeing a lot of Mr. Red Frowny Face on your S9 and S10, or waking up with a dry mouth, it's likely that the CPAP doctor and the DME never bothered to even look at your leak data.

And if at every visit with the doctor or DME you told them things seemed to be going ok in terms of how you thought you were sleeping and in terms of how you felt, the doc and the DME simply assumed that everything was OK with your therapy and didn't bother to check the actual data.

I've had dry mouth for a while but never associated with the CPAP and air leak until my wife decided to mention that I really had bad breath I need to do something about it. Searching and searching I found that a air leak out the mouth will cause both dry mouth and bad breath, bingo!

Yes, but if you never told the DME or doc this was happening, they assumed that it wasn't and didn't bother to check the data. (Yes, DMEs and docs are that lazy. Or perhaps overworked.)

Here come my problems... Talked to my DME supplier about exchanging my N20 mask with a full face mask to take of my problems so I went with a f20 mask. At some point in the night my mouth would open some and the bottom seal of the Mask would be at the bottom of my lower lip, got a chin strap couldn't sleep with it try to different chin strap didn't work so good for what I remember. After trying and failure tried a different full face mask then a hybrid mask, then duct tape then duct tape and chin strap then my N20 mask, duct tape and chin strap last night perfect score 100 still feel like crap.

Sounds like the "cure" for the leaks is turning out to be worse than the original "leaks" themselves.

In other words, you may be working to hard to try to eliminate every bit of leaking you can eliminate.

Looking at your actual efficacy data in either OSCAR (see the sticky post) or SleepHQ could help us help you understand why you're still feeling like crap.

But without that data, we're shooting in the dark.

Throat a litte dry, humidifier and hose set on auto.

You might want to change the humidifier setting from "auto" to "manual" and then crank the humidifier up to its maximum. If that can only be done by also setting the hose temp setting from "auto" to "manual", then I'd do that too. Play with the temp setting on the hose based on comfort and whether you're getting any rainout.

Ok, will go to manual, thanks.


In general you want the hose temp set high enough to help prevent rainout at your desired humidifier setting and low enough that you don't feel like you're trying to sleep in a swamp.

Also in the late afternoon if I sit down to get on my phone I start fighting to stay awake, it reminds me of a long time ago when I did not have a CPAP machine and I would fall asleep in meetings.

This points to the heart of why you want to look at the full efficacy data since you have a doc and a DME who ain't gonna do that.

Yes, finding this out now. Really frustrating.

Over time, our bodies change with age. And that can cause our underlying OSA to change even if we're PAPing every single night. With a machine that records full efficacy data, we can look at that data and, even as patients, we can learn to interpret that data well enough to figure out if changes in our pressure settings need to be made. And, as long as we're not too afraid of the wet-noodle lashing we'll get from the doc and the DME, we can even learn how to competently change the pressure settings so that our machine delivers better PAP therapy and we start to feel better.

Sometime during this, my doctor did blood work, complaining about being tired. My blood count ( CBC ) shows my red blood count is high told me to donate blood to get it down told me to stop my testosterone therapy and then recheck blood. Doctor said red blood count up from a combination of testosterone therapy and sleep apnea.

Is this doc your PCP? Or is this the CPAP doc that didn't bother to look at the CPAP data and tell you that you had some leak problems you needed to work on?

PCP

With just my N20 mask and the mouth leak I would feel okay.

More evidence that the "cure" for the leaks may be worse than the leaks themselves. More about this in a bit.

I haven't felt refreshed and energized in a long time and wonder if something else could be going on with my sleep. I really would like to wake up and feel energized and refreshed throughout the day like I used to.

This is the most critical thing to work on in my opinion.

So let's start. Here's what I would strongly recommend that you do right now.

Because these are easy, do them as soon as you can:

1) Please tell us the exact model for your current S11. And tell us the exact settings for everything you can. What mode are you using (CPAP or APAP)? What pressure setting(s)? Are you using the ramp? If so, how long does the ramp last? Are you using EPR? If so, what's it set to?

ResMed S11 Autoset
Pressure range 8 to 14
Mode Auto set
Auto set response standard
Ramp off
Epr on
Epr type full-time
EPR level 1
Smart start on
Smart off off

2) Look to find out if there is an SD card slot in your machine. If there is an SD card in the machine, let us know and we'll tell you how to get the data you need to see off that SD card. If there is an empty slot for an SD card, then go out and buy an SD card. (A cheap small one is fine.) When you put it in the machine, it should ask you if you want to format the card. Obviously say Yes.

Yes put a SD card in after I read your reply.

3) If there is no SD card slot in your machine, let us know that as well. There are people around here who know what kind of data you will be able to get off the cloud if you can't record the data to an SD card itself.


Now for the harder stuff:

4) If your machine has a SD card slot: Once you have an SD card installed, then download OSCAR to your computer or open an account at SleepHQ and then download your S11's data into OSCAR or SleepHQ. Post some of your detailed daily data here for us to look at. (There's a sticky thread with instructions.) In the short run, you may need to post data every day or every few days: You can keep using this thread to post your data each time you log into cpaptalk.com. That way we can respond to what you are seeing and make specific recommendations on what to try in order to improve your CPAP therapy and the quality of your sleep, all with a goal towards helping you get back to waking up feeling energized and refreshed with enough energy to get through the day like you used to.

5) If your machine does not have a slot for an SD card, LET US KNOW. And ask the question, "How do I get efficacy data off my machine?" (I don't know the answer to that since I'm using an older machine from a different manufacturer. But someone will know the answer.)

6) Since you felt better with N20 mask and mouth leak, I'd actually go back to using the N20 mask if I were you. But I would try to do a few small things to address the leak while you're gathering more data for us to look at to see what might be going wrong with your PAP therapy. Here are things that I would suggest you try:

• Think about how you fit the mask at the beginning of the night. Try to fit the mask while lying down in the position you intend to sleep. And try to fit it at your full pressure instead of the beginning ramp pressure.
• See if Biotene mouthwash or gel or Xylimelt Tabs helps with the dry mouth. This won't fix the leaks, but it could relive your dry mouth, which may help make you feel better.
• See if you can train your tongue to stay in the right position. When a person is breathing normally through his/her nose, his/her tongue is usually touching the top of the back of the front teeth (the gum line) and the top of the mouth. People who breathe through their nostrils automatically put their tongue in that position whenever they are at rest or when sleeping. And if the tongue is in that position when you are sleeping, it usually prevents air from getting into the mouth in the first place. And that, in turn will help keep the mouth shut and the leaks to a minimum.
• Deal with nasal congestion. If you have problems with a stuffy nose, you are more likely to start breathing through your mouth. So if your nose is congested, think about taking an antihistamine if allergies are the problem. Or try a saline nasal spray or a neti-pot before going to bed. (Long term use of decongestant nasal sprays, unfortunately, can lead to serious problems with rebound nasal congestion---your nose is more stopped up after the spray wears off than it was before you used the spray in the first place.)
• Consider sleeping with a soft cervical collar. That may be more comfortable than the chin straps you've already tried and found difficult to sleep with, but it may also provide just enough resistance to help prevent your mouth from dropping open.

Finally, you write:

I haven't felt refreshed and energized in a long time and wonder if something else could be going on with my sleep.

Be open minded about the idea that something other than OSA could be messing with your sleep.

If you haven't had a check-up with your PCP in a while, it's worth getting a check-up. And asking if there's anything going on with your general health that could be making you sleepy or tired during the daytime. There are causes of daytime fatigue and sleepiness that are not directly related to sleep disorders, and it's important to investigate whether something else might be going on, particularly in light of the abnormal blood work.

Had a check up everything was fine.

You might also want to talk to both your PCP and your sleep doctor about whether there might be any other sleep disorders that could have developed. With your sleep doc, you need to stress that you were feeling much better and waking up rested and refreshed with enough energy to get through your days and now you're not. If you can pinpoint when things started to change that's even better. (In other words, were you feeling pretty good a few months ago? Or has it been over a year? Or has it been over 5 years since you last felt really rested?

And much as we all loathe the idea of doing another sleep study, if it's been a long time (5 or more years) since you had your last sleep study, it might be worth asking for a new sleep study. That might help tease out whether you now have something like periodic limb movement disorder going on in addition to the OSA.

The only sleep study I had was 25 years ago when I got my CPAP machine for the first time.

Best of luck!

BBX2125 wrote: ↑

Sun Sep 25, 2022 10:07 am

Sometime during this, my doctor did blood work, complaining about being tired. My blood count ( CBC ) shows my red blood count is high told me to donate blood to get it down told me to stop my testosterone therapy and then recheck blood. Doctor said red blood count up from a combination of testosterone therapy and sleep apnea.

Respirator99 wrote: ↑

Mon Sep 26, 2022 4:27 am

BBX2125, to make life easier your yourself and the people who are providing guidance, please use Oscar's built-in screenshot facility rather than taking photos from your screen. In Oscar, just press the [F12] button and a screen shot will be created in your pictures folder. If you're using a laptop which doesn't have an [F12], look in the view menu. This will produce a very clear image of the whole page.

Talked to my DME supplier about exchanging my N20 mask with a full face mask to take of my problems so I went with a f20 mask. At some point in the night my mouth would open some and the bottom seal of the Mask would be at the bottom of my lower lip, got a chin strap couldn't sleep with it try to different chin strap didn't work so good for what I remember. After trying and failure tried a different full face mask then a hybrid mask, then duct tape then duct tape and chin strap then my N20 mask, duct tape and chin strap last night perfect score 100 still feel like crap.

robysue1 wrote: ↑

Mon Sep 26, 2022 8:22 am

BBX2125,

It will be easier to see what's going on when you either repost the current data or add more data using Respirator99's instructions.

But in looking at the data you have posted, there's nothing that jumps out and screams FIX ME! in capital letters. The leaks probably need to be addressed, but more on that in a bit.

On these two nights, the AHI appears to be very low. You're not hitting your max setting. So based on this limited data, I would say that there's no point in doing any pressure adjustments.

And you also don't seem to be experiencing numerous wakes that are showing up as "turn machine off and then turn the machine back on." There is the one wake at 2:45 on Night 1 (bathroom break perhaps?) and on Night 2 there is a break at 0:30, but we can't tell when you went to bed on that night.

What about wakes where you didn't turn the machine off and back on? Do you remember waking up a lot on either of these nights? Do you remember whether it took an excessive amount of time to fall asleep at the beginning of the night?

Yes got up to use the restroom more than likely.
Yes the first night it took a while to fall asleep because of the duct tape.

As for the leaks, yes they're problematic. But the questions are how much are they affecting your sleep and the efficacy of your therapy. And another important question is whether the rigamarole you need to go through to fix the leaks is worth it---i.e. is the "cure" for the leaks worse than the leaks themselves?

Objectively: on Night 1 you're over the Red Line (i.e. in "Large Leak" territory) for 16% of the night, so no Mr. Red Frowny Face in the morning as I recall. But your large leaks are pretty lengthy between 2:30 and 4:20. with a 40 minute long Large Leak between 3:05 and 3:45. However, it's also worth noting that even your largest Large Leaks are below (and usually well below) 45 L/min. And when the Large Leaks are below 45 L/min, the machine usually doesn't have any serious problems with tracking your breathing, flagging events (although they may be mislabeled), or effective enough, but not great, therapy.

Objectively: on Night 2 you're over the Red Line for only 3% of the total night and the only official Large Leaks are scored right before the break between sessions when you took the mask off at roughly 0:30. The left side of your flow rate and event chart is cut off, so we can't tell whether the leak actually woke you up or whether you'd just gone to bed and realized the mask was leaking like crazy and so you just decided to start over by turning the machine off, and refitting the mask and turning the machine back on with a much better seal.

For what it's worth: If your leak line usually looks like Night 2, then you've got the leaks quite well controlled. And if they're not waking you up, then you don't need to do anything more in terms of fighting the leaks.

So can you answer these questions:

Subjectively, which night was better in terms of sleep quality and how you felt the next day?

Also: Which mask did you use on each of these nights?

Also: What anti-leak measures did you take on each of these nights?

Both nights I felt ok the next day, sorry for being vague that's what I've written in my notes. But not refreshed and energized like a great night's sleep.

Both nights I use the ResMed N20 and duct tape.

Leak measures mask readjustment and duct tape.

I ask because in your very first post you wrote:

Talked to my DME supplier about exchanging my N20 mask with a full face mask to take of my problems so I went with a f20 mask. At some point in the night my mouth would open some and the bottom seal of the Mask would be at the bottom of my lower lip, got a chin strap couldn't sleep with it try to different chin strap didn't work so good for what I remember. After trying and failure tried a different full face mask then a hybrid mask, then duct tape then duct tape and chin strap then my N20 mask, duct tape and chin strap last night perfect score 100 still feel like crap.

So I believe the issue you want to solve is finding the balance between fixing the leaks and feeling awful because of the rigamarole you went through to fix the leaks and not doing anything and having leaks that may be bad enough and long enough to affect your sleep and/or your therapy. In other words, you need to work on figuring out how much "stuff" you need to do to adequately fix the leaks so that you can sleep without the leaks waking you up and without the leaks posing a real problem in terms of your therapy.

BBX2125 wrote: ↑

Mon Sep 26, 2022 11:45 am

robysue1 wrote: ↑

Mon Sep 26, 2022 8:22 am

What about wakes where you didn't turn the machine off and back on? Do you remember waking up a lot on either of these nights? Do you remember whether it took an excessive amount of time to fall asleep at the beginning of the night?

Yes got up to use the restroom more than likely.
Yes the first night it took a while to fall asleep because of the duct tape.

So can you answer these questions:

Subjectively, which night was better in terms of sleep quality and how you felt the next day?

Also: Which mask did you use on each of these nights?

Also: What anti-leak measures did you take on each of these nights?

Both nights I felt ok the next day, sorry for being vague that's what I've written in my notes. But not refreshed and energized like a great night's sleep.

Both nights I use the ResMed N20 and duct tape.

Leak measures mask readjustment and duct tape.

Janknitz wrote: The "tongue on the roof of the mouth thing" is as follows:
First, put your tongue on the roof of your mouth, just behind your front teeth. Now plug your nose and see if you can breathe in through your mouth.

If you CANNOT get air in through your mouth with your tongue in this position and your nose plugged, this MAY work because it means your tongue position will seal off the oropharynx effectively so the air doesn't escape out your mouth. So the trick is to train yourself to keep your tongue in that position by doing it ALL DAY if you are not talking or eating. A few days of this to remember and reinforce that tongue position, and if you really work it, this might carryover into night time.

When you were a kid, did you ever play at talking underwater in the bathtub or in a swimming pool? Same principle applies here--most of us have the ability to seal off the back of the throat so we wouldn't aspirate the water when playing like that. Some people just can't do it (especially if they have had any surgeries to "cure" their apnea) and some people can't get it to stay sealed during sleep. But most people can. Even if your jaw goes slack during sleep, if your tongue is in the right position (and it seems to sort of "suction" into place), the air will not escape out of your mouth and it won't be so dry.

robysue1 wrote: ↑

Mon Sep 26, 2022 2:49 pm

BBX2125,

In answer to my questions, you wrote:

BBX2125 wrote: ↑

Mon Sep 26, 2022 11:45 am

robysue1 wrote: ↑

Mon Sep 26, 2022 8:22 am

What about wakes where you didn't turn the machine off and back on? Do you remember waking up a lot on either of these nights? Do you remember whether it took an excessive amount of time to fall asleep at the beginning of the night?

Yes got up to use the restroom more than likely.
Yes the first night it took a while to fall asleep because of the duct tape.

So other than the bathroom break on night 1 and the problems with falling asleep because of the duct tape on night 2, you don't remember an excessive number of wakes?

No, not any.

So can you answer these questions:

Subjectively, which night was better in terms of sleep quality and how you felt the next day?

Also: Which mask did you use on each of these nights?

Also: What anti-leak measures did you take on each of these nights?

Both nights I felt ok the next day, sorry for being vague that's what I've written in my notes. But not refreshed and energized like a great night's sleep.

Both nights I use the ResMed N20 and duct tape.

Leak measures mask readjustment and duct tape.

So is tape + the Resmed N20 more or less comfortable than dealing with the F20 full face mask?

Yes, because the F20 to me is heavy, bulky and hard especially when compared to the Quattro FX which I tried but never could get it to seal right.

And were these nights better than the ones you had with the F20 mask?

Yes.

And subjectively, do you think you felt better in the morning when you were using the N20 nasal mask without taping than you felt after taping?

Maybe a little better, but not refresh and energize ready to seize the day.

If taping with the Resmed N20 seems like a promising potential solution to your leaks, you might also want to ask for advice on what kind of tape to use. Because it seems to me that duct tape isn't going to play very nicely with your facial skin in the long run.

Will do. I have purchased both Smith and Nephew/BSN Cover-Roll Stretch and 3M Micropore Surgical Tape. Just will not stick on my face even freshly washed.

Finally, I'll also offer this advice: It may be possible for you to train your tongue to stay put in a position on the top of your mouth while you are asleep, and that could eliminate the need for taping with the Resmed N20 mask in the long run.

Thanks will look at it.

Here is Janknitz's nice summary of the tongue-on-roof-of-mouth technique from another active thread. (viewtopic/t185133/No-effect-from-humidi ... 5#p1421509)

Janknitz wrote: The "tongue on the roof of the mouth thing" is as follows:
First, put your tongue on the roof of your mouth, just behind your front teeth. Now plug your nose and see if you can breathe in through your mouth.

If you CANNOT get air in through your mouth with your tongue in this position and your nose plugged, this MAY work because it means your tongue position will seal off the oropharynx effectively so the air doesn't escape out your mouth. So the trick is to train yourself to keep your tongue in that position by doing it ALL DAY if you are not talking or eating. A few days of this to remember and reinforce that tongue position, and if you really work it, this might carryover into night time.

When you were a kid, did you ever play at talking underwater in the bathtub or in a swimming pool? Same principle applies here--most of us have the ability to seal off the back of the throat so we wouldn't aspirate the water when playing like that. Some people just can't do it (especially if they have had any surgeries to "cure" their apnea) and some people can't get it to stay sealed during sleep. But most people can. Even if your jaw goes slack during sleep, if your tongue is in the right position (and it seems to sort of "suction" into place), the air will not escape out of your mouth and it won't be so dry.

BBX2125 wrote: ↑

Sun Sep 25, 2022 10:07 am

Sometime during this, my doctor did blood work, complaining about being tired. My blood count ( CBC ) shows my red blood count is high told me to donate blood to get it down told me to stop my testosterone therapy and then recheck blood. Doctor said red blood count up from a combination of testosterone therapy and sleep apnea.