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On CPAP for over a year - still extremely tired....

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theres126 +0 points · 3 months ago Original Poster

Hello- I was diagnosed with moderate sleep apnea about a year and 1/2 ago after an in-home study. Started CPAP therapy in September 2017. Surprisingly, the CPAP was registering CA's, in addition to the AHIs, so they sent me for a study/titration at a sleep lab. They discovered Central Apneas when my pressure went above 13ish, so adjusted my Resmed 10 to a high pressure of 10. Since that time, my AHIs have been averaging about 2 or 2.5.

Problem is, I still have interrupted sleep - every 2 hours, probably due to hormonal changes (ie. hot flashes), and also due to my husband snoring and now using his own CPAP that leaks loudly all the time, and because of our two golden retrievers who like to sleep in the bed. I know all that needs to change, but even when I "sleep" (ie. I have the mask on, though not always sleeping), and am still so tired every day that I need to take short naps and find myself falling asleep on my long commute home from work.

I'm not able to do a full face mask, since I have TMJ and it was making my jaw worse, so use a nasal mask and have to tape my mouth, since I'm a mouth breather. (my AHIs are much lower when my mouth is taped).

I'm wondering why I'm still so extremely tired. Like, falling asleep in the middle of the day, tired. Could it be my oxygen levels? Or is it because of the disjointed sleeping, usually waking every two hours? At first, the CPAP seemed to help a bit, but the last 6 or 8 months, I feel exactly like I did before CPAP therapy.

Thanks!

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Sierra +0 points · 3 months ago Sleep Innovater

I was diagnosed with an AHI of 37 and while there were minimal CA events, they have emerged as an issue while being treated with a CPAP. I was having trouble getting under 3 for AHI. A few weeks ago I switched from a auto range of pressures to a fixed 11 cm of pressure. It has made a pretty impressive improvement in my AHI. I averaged 1.6 AHI for December, and of that 0.45 was central apnea. So my thoughts are that if your machine was left in auto and just had the max pressure set at 10 then there may be some room for further improvement by going to the fixed CPAP mode and just using one pressure. 10 cm sounds like a good starting point, but that could be adjusted up or down based on results. My thinking is that if centrals exceed obstructive then the pressure may be a bit high. And if obstructives are more dominant then pressure needs to go up. I think the benefit of using a fixed pressure is the obvious pressure limitation, but also there is some avoided obstructive events when the pressure may be too low in the auto range. Do you use SleepyHead to track your machine performance? I find it very helpful.

Costco sell some nice dog beds. I don't know how you could get any sleep with two goldens in the bed. They are big!

As for your husband has he tried the mouth taping? I finally convinced my wife to use mouth taping as her leaks (from the mouth) were keeping me awake. Unless one is on higher pressure I think the nasal pillow and mouth tape is a better idea than a full face. They are hard to seal.

Hope that helps some, Any questions just ask.

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theres126 +0 points · 3 months ago Original Poster

Thanks for your response!

My doctor originally wanted to do a fixed pressure at 8, since that's where everything was best, but since I was going up to about 13 on my own, and had no centrals during the test at 10, I talked him into doing 8-10. But, I'm between 9.8 and 10 every night, so really I could have had him just go with 10. I wonder if 11 would be better?

My AHI with taping again this last week have been markedly better - about 1.4 and below. (compared to 2.5 and above). Funny thing is - when I was on vacation to Banff and sleeping in a hostel bed by myself, my numbers were so much better all week - even without mouth taping. I never figured that one out.

I think a lot of my problem is that I do wake up every two hours like clockwork - even though for a while it had gotten better - more like 3-4 hours. Now, I'm back to every two. And that doesn't count the waking up from my 70 pound dog deciding to sleep on me in the middle of the night, or waking with all the noise my husband is making. I'm pretty sure it's hormonal, but my sleep doctor just wanted to do "sleep training" by having me actually sleep less each night, so I sleep through those times, I'm so tired. (not a good idea with a 1-2 hour commute). And my regular doctor believes it's hormonal and wanted to prescribe medication, which I don't like the idea of either.

As for my husband, I've suggested the mouth taping. He was SO against using a CPAP - he hates it - and I haven't been able to convince him yet. He's on a bipap too, so not sure if that makes a difference.

I haven't used sleepyhead, but plan to. One thing I'm worried about is that I'm having a lot of respiratory disturbances that don't show up as AHIs, and that my oxygen levels are dropping like they did in the sleep study (down to 84). Would that cause me to feel so overwhelmingly tired?

Thanks again. And, yeah - we have a couple of the dog beds, but the dogs jump up after we're asleep. I may have to start keeping them out of the room, or sleep in my daughter's room (she's out of the house) for a week or two and see if that helps......

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Sierra +0 points · 3 months ago Sleep Innovater

On pressure are you using EPR? If so, I think one can get better results with it set to be in effect during ramp only. If you are using EPR full time you may get an almost one for one reduction in needed pressure by turning it off. I had EPR at 3 full time and my pressure in auto went down by about 2 cm when I switched it to ramp only. In my view the lower the pressure one can use the better it is. SleepyHead can help you figure that stuff out. It also flags RERA events which are flow restrictions which can wake you up, as well as snore, and flow limitations. If you post where you are with EPR I may be able to make some more suggestions.

It is often assumed that apnea wakes you up. I think the reverse can happen too. A poor sleep generates apnea. I have found the site at the link below very helpful to me in getting a better sleep. One of my mistakes was trying to sleep too long, and I was taking naps during the day. Now I try to avoid all naps, and get no more than 8 hours sleep at night. Another suggestion at the site is to get out of bed if you can't sleep. But there is a lot of help there. A pharmacist developed the site to try and help people get off sleep meds.

Sleepwell It's No Dream

I hated the CPAP as well, and I kind of still do. I convinced my wife to try the mouth taping by showing her the leaks she was having in SleepyHead, and I also got her to watch this video on mouth taping for a better sleep. She is now sold on it. Perhaps you could get both yourself and your husband on SleepyHead and also get him to watch the video.

Oxygen desaturation events are the outcome of apnea events of various types. In SleepyHead you can input data from an oxygen meter. You can also view Minute Ventilation on the graphs. Oxygen tends to drop when Minute Ventilation drops.

Dogs are pretty smart about learning what they can do and cannot do. Our black lab moved out with our daughter but comes back to visit frequently. My daughter lets her on the bed and on the couch. Here we do not. She will not even attempt to sleep on our bed, and she only sleeps on the couch when we are not home. As soon as the door opens she is off the couch and on the floor. She knows that the rules change when the people change...

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theres126 +0 points · 3 months ago Original Poster

I'm not sure I know what EPR is. Is it a setting? And, I have a pretty short ramp - only about 5 minutes (I think).

I'll definitely check out the video on mouth taping. I had a physical therapist that recommended it to me - just in general, not for apnea. She does it regularly, since she said mouth breathing is so bad for you.

As for the pups, I'm definitely going to start working on keeping them off the bed. It was funny - way back when we had a double bed (first married), we let the pups sleep in the bed. Then we got a king bed, and kicked them out. Of course, that was 3 or 4 dogs ago, and now these are back. The one is a big snuggler - always wants to be right up against you, which is a problem when trying to sleep.....

Is there a specific oxygen meter you'd recommend? And, I may need some help interpreting the sleepyhead data, since I've never seen it before. Thanks again for your input.

My results were sort of weird. In my two night, home test, I had 22 AHI and oxygen didn't go below 89 or 90. When I did the sleep study at the sleep lab, it was a much shorter "test" period, since they were doing titration the same night, and my AHI was only 5.5, though my respiratory disturbances were 15. And, my oxygen was down to 84 at times. I didn't achieve REM for very long, and the centrals started around 11 (I think - need to find my results). But, being only a short window for testing before I started titration, I'm not sure how accurate it was. Plus, I dumbly took an advil PM, which I never do, and it gave me restless leg syndrome, which I NEVER get..... So, I'm not sure if those tests were skewed.

How often do they recommend you get a new sleep study?

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Biguglygremlin +0 points · 3 months ago Sleep Commentator

Restless leg syndrome could be a good cure for restless retriever syndrome! :)

In a sense your machine is doing a sleep study every night. Much of the rest is basic diagnostics and trial and error.

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Sierra +0 points · 3 months ago Sleep Innovater

To see how the EPR is set up it is easiest to go into the Clinical Setup Menu. Just press and hold the Home button and the round Set knob for about 5 seconds. This will bring up the option to go into the Clinical Menu. Just press the Set knob and rotate it to go up and down the menu like the standard user menu. In the Comfort section you will find how the EPR is set up, and the ramp as well. If you could post back what you see in the comfort section for settings I can give you a better idea if there is any opportunity for improvement. To get out of the Clinical Menu just press the Home key only, and then select go back to the User Menu.

There is always one thing that seems to be common with dogs on the bed. They only want to sleep in one spot -- the same one that you want to sleep in!

Here are some links to SleepyHead. You need a Mac or PC to run the free software, and a SD card reader to get the data from your machine SD card to your computer.

Download

Basic Manual

I have not used the Oximeters, so perhaps others could help you there. Here is the screen that SleepyHead displays which give some models that are compatible with SleepyHead data import.

From your sleep tests it sounds like you really do not need a lot of pressure to address your obstructive apnea. You may need more for the RERA events. Again SleepyHead should be helpful in identifying what your specific issues are.

As far as repeat sleep tests, I think the need for them are minimized by monitoring yourself with SleepyHead, and only going for repeat tests when/if issues are not being resolved. My wife has been on a APAP for 4 years now and has never had another sleep test after the one at home for diagnosis.

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theres126 +0 points · 3 months ago Original Poster

Just downloaded sleepyhead and imported my data. To clarify your instructions above, the "home" button is the one on top? Just want to make sure I'm pressing the right thing :)

And with just a preliminary look at the first screen on sleepyhead, it sure does look like I had a lot more leaks and clear airway events when I stopped mouth taping....

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Sierra +0 points · 3 months ago Sleep Innovater

Looks like you figured it out. The Home key is the big wide rectangular one near the bottom front.

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theres126 +0 points · 3 months ago Original Poster

Yikes - from what I'm seeing, I'm having a lot of clear airway events (and event flags). What's the number after them? How long they last?

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Sierra +0 points · 3 months ago Sleep Innovater

It would be best to paste a screenshot here, so I could look at what your are looking at. On a PC just press F12 and a window will pop up in the bottom right showing where the image file has been saved. With Windows Explorer, just left click on it, and drag it to the body of a message. Then it will upload to this site. Use the Write a Reply Button at the very bottom of this thread so you get a full screen width for the image to display.

If you are looking at the list of events on the left then the number in brackets is the length of the event in seconds. It takes a minimum of 10 seconds to make it an event, so the number should be 10 or more.

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theres126 +0 points · 3 months ago Original Poster

Here you go! Comfort: Response: Soft Ramp time: Off EPR: On EPR Type: Full time EPR Level: 3

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Sierra +0 points · 3 months ago Sleep Innovater

Interesting that the Response is set on Soft. You are the first one that I have been aware of that has used it. It just slows down the speed at which the machine increases pressure in Auto.

  • The Ramp is turned off
  • Your EPR is on full time and set at 3. That means when your pressure on inhale hits your maximum of 10, the EPR will be reducing that pressure by 3 cm on exhale. So you really have a 10 cm inhale and 7 cm exhale. The issue is that you can get apnea on the exhale or transition between inhale and exhale. With the EPR turned off the pressure will be the same on inhale and exhale. What I found is that when I turned EPR off then the automatic pressure would reduce by about 2 cm. In other words it took less pressure to get the same results.
  • If you want I can give you what I would suggest for comfort settings. My thoughts would be to leave the treatment pressures alone and in auto until you see what changing the EPR comfort setting does.
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Biguglygremlin +0 points · 3 months ago Sleep Commentator

Hi theres126

It's a bad place to be at, I'm sorry and I guess it doesn't really help to know that you are not alone.

It's hard to find meaningful answers when you are too tired to think straight.

Costco sounds like a vital piece of the puzzle and the daughter's room could be a well deserved break but silencing the hubby's leaky mask would still be a worthy goal.

I'm now wondering what my poor wife has to put up with. :(

I share your husband's view of CPAPs and especially mouth taping. There must be other ways to manage the situation. What kind of mask and head gear is he using? Does he suffer from asthma or allergies?

As for hormones and such I've had my own problems in that area but have little knowledge of the subject from your perspective.

A few years back it was widely accepted for women to be using HRT but I seem to recall it falling out of favour. Although at the time it seemed like an over-reaction.

Anyways there must be readers who know what they are talking about on this subject.

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theres126 +0 points · 3 months ago Original Poster

Thanks for your reply. And, you're right - so hard to think through things when so tired. He's using the dreamwear headgear - same as me - and the Resmed Bipap (not sure the model). And, a chin strap. Doesn't seem to work. And, I can't do HRT, since I had hormone positive breast cancer about 12 years ago, which limits my options :/

I actually don't mind the mouth taping at all, and was actually looking forward to the CPAP, thinking/hoping, I'd finally not be tired. It really stinks that it hasn't worked. He's been in denial since his home study said he had 51 AHI - he didn't believe it, and still thinks it was wrong. It took months, literally, to get the sleep study in the sleep center, then another one when they couldn't get the pressure right, and then get the equipment and actually start using it. Opposite of me. I guess, having had a serious disease and seeing how treatment worked for me, made it a little more palatable for me.....

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Biguglygremlin +0 points · 3 months ago Sleep Commentator

Denial is what the male species does best followed closely by ignorance but it did have a purpose once. Being ignorant of discomfort or pain or distractions is what enabled us to bring the buffalo home and if I ever get back to my dark dank cave in the mountainside it will be useful again but it might not be the smartest approach in the modern world.

In stark contrast it has never ceased to amaze me how much intervention women are willing to put up with and still remain compliant.

We are very close to being different species.

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theres126 +0 points · 3 months ago Original Poster

Haha - good point!

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Biguglygremlin +0 points · 3 months ago Sleep Commentator

To remove any potential misunderstandings theres126

Be cautious about winding up the pressure.
To some extent near enough is good enough.
"Normal" people have regular AHI events.

This is Sierra's field of experience but, in my view, it would probably be better to accept an AHI of 5 than to provoke a CSA of 1

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theres126 +0 points · 3 months ago Original Poster

Yeah, I actually get "Clear Airway" events every night. Usually about 1/2 of whatever my AHI score is. The doctor seemed okay with that though........ Of course, he's about 12 (or looks it), so I question his thoughts on it sometimes.....

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Sierra +0 points · 3 months ago Sleep Innovater

With mixed central and obstructive apnea I think it makes some sense to try and balance the obstructive to central if you can't get central to zero with lower pressure. As you lower pressure you tend to get more obstructive and less central. If you can get to zero central with obstructive OK, then that is usually a good point to settle on. Cranking up pressure is almost always bad for central apnea issues. One of the things I monitor in SleepyHead is total time in apnea. I try to minimize that number rather than just focus on the AHI.

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theres126 +0 points · 3 months ago Original Poster

Thanks. So, do you think I should go lower than the 10 for my maximum? Looks like last night I had 5 clear airway events, with three of them happening within 15 minutes around 4 am - 10 seconds, 24 seconds, and 17 seconds, respectively. I had just 3 Hypopneas and 3 Obstructive, and 1 RERA....... Looking back around Christmas, I was having between 16 and 19 clear airway events a night... I even see 23 one night :/

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Sierra +0 points · 3 months ago Sleep Innovater

It always confuses things when you make a bunch of changes at once. For now my suggestion would be to try and improve the comfort factor, and leave the therapy pressures alone. You also may want to consult with your sleep clinic before changing the therapy pressures. To improve the comfort I would make the following changes first and then monitor what happens with SleepyHead for a few days before doing anything else. Apnea is never consistent from night to night, and you don't want to base changes on one night's experience. In order they occur in the clinical menu I would do the following to sort out your EPR issue. This is on the understanding your current therapy pressures are 6 minimum and 10 maximum.

  • Ramp Time: Auto (This will bring up the next setting for Start Pressure)
  • Start Pressure: 6 cm
  • EPR: On (No change as you already have it on)
  • EPR Type: Ramp Only
  • EPR Level: 3 (your current setting)

That is the only change for now. The machine with these settings will go up to 6 cm (Start Pressure) on inhale, and down to 4 cm on exhale, during the ramp period only. This should feel quite similar to what you have now. When the machine detects you are asleep, the ramp ends, it will stop the EPR, and it will go to your current minimum pressure of 6 cm for inhale and exhale. Without the EPR on during sleep I would expect the machine in Auto will not try to raise the pressure as much, and you may end up with pressures nearer 8 cm than 10 cm. That should be more comfortable, and your apena events should be about the same. But, you will need a few nights to determine that.

Hope that helps some. Here is a link to a technical manual on the machine that you can use for reference. It is a good idea to save this as a PDF for future reference.

AirSense Technical Manual

With the additional info you provided that your minimum is 6 cm, I edited the above to suit.

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theres126 +0 points · 3 months ago Original Poster

So, I'm not sure if my screenshot is loading, or is disappearing into the Bermuda Triangle somewhere. I've uploaded the link 3 times, but it's not showing. Is there a delay? Also, in my sleepyhead data screen, I somehow made the CA part of the flagged events disappear. Any idea how to get it back? I'll try uploading my screenshot again, just in case.....

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Sierra +0 points · 3 months ago Sleep Innovater

I noticed something funny going on with the forum last night. Your whole thread seemed to disappear for a while. I think it may have something to do with their spam prevention when newer users try to upload multiple images. I think they may go into a time delay as you suspect.

In the bottom left of the graph area there are two boxes; Flags, and Possibly CSR. If you click on the right box you can turn the flags to be displayed on (green) and off (red). You may have inadvertently turned off the flags for central events. You can get a bit better layout of the screens by clicking on the black triangle beside the date to hide the full month calendar. And if you go to File, Preferences, Appearance, and then uncheck the "show events pie chart" box to hide that too. It covers up more important information. Last if you click on the Details tab it will let more important information show.

Based on your chart posted, it looks to me that you have a lower minimum than 8 cm? It should be shown in the Details area. With the minimum lower than 8, I would have to rethink the settings for comfort that I posted above. The issue is that you can't set the Start Pressure for the ramp higher than the minimum.

You can also scrunch the graphs a bit by clicking and dragging on the grey dividing lines. If you click and drag on the title of the graph you can rearrange them. It would be helpful to see the snore and flow limitation graph, if you can drag them up. Your machine seems to be responding to events that are not being flagged. I'm thinking it must be snore and/or flow limitation.

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theres126 +0 points · 3 months ago Original Poster

Thanks - I'll look at those changes to my chart. And, yeah - they set my minimum to 6 and maximum to 10. (he originally was going to go with a straight 8, since that's where I wasn't having centrals but was getting into REM). Last night, I went ahead and only changed my ramp to on for 10 minutes and had the EPR for ramp only. And, I don't think it was that, but I had a horrible time getting to sleep. I was up and down for hours. On a good note, I had zero centrals for the first time, and my AHI was .7 and Apneas, .1 (according to MyAir and the readings on my machine). Of course, I know that was probably totally skewed from having the mask on and not sleeping for hours....... Will try again tonight!
When I originally got the machine, they had me at a minimum of 4 and maximum of 20 (default settings?), and I was going up to something like 11 or 12, but with lots of centrals.

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Sierra +0 points · 3 months ago Sleep Innovater

With the minimum set for 6 cm, you could use the settings I posted above for the Auto Ramp mode. Just change the Ramp Start to 6 cm. If you can post some examples with the new comfort settings and the SleepyHead format changes it would be helpful.

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theres126 +0 points · 2 months ago Original Poster

Hi- Sorry I haven't gotten any examples posted - was out of town this weekend. I did make the changes you recommended, and from what I'm seeing on the CPAP sleep reports, my CA is way down - even a zero today, and though the AHI was 1.2, the AI was only .1. Can't wait to download the data to sleepyhead and see what it shows. Still not sleeping great, but that was surprising! First time I've had a zero for CA since I started in September of 2017!

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Sierra +0 points · 2 months ago Sleep Innovater

Will be interested to see the SleepyHead charts. It sounds good.

I think the first step for comfort is to get the pressure down while getting the AHI down. But, when you post your SleepyHead I will give you my thoughts.

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theres126 +0 points · 2 months ago Original Poster

I finally had time to upload my data. My centrals are WAY down still - I actually had my first zero one night! But, my leaks are huge. And, I'm still super sleepy during the day - like falling asleep at my desk, sleepy. :( Would the leaks be causing that? Not sure what's causing the leaks...... I use tape, though just 1/2 inch wide, and the nasal cushion.

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theres126 +0 points · 2 months ago Original Poster

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Sierra +0 points · 2 months ago Sleep Innovater

Some comments on your SleepyHead layout. I think for what I am seeing here, you would be best to show Event Flags, Pressure, Leak Rate, and Mask Pressure on one page. No need to show the rest of the graphs for now. It would also be helpful to include all the information in the Detail Bar on the left. While it is not there, I'm guessing from your Event Flags bar that OA is very low. I only see one OA event and it looks like it happened with pressure at about 7 cm. This suggests you may be able to get away with a lower pressure. It may also reduce the CA, Hypopnea, and your leak rate. And for sure lower pressure is more comfortable. I think after you gather a bit more data you may be able to reduce your max pressure to 9 cm, and increase your minimum to 8 cm. The other thing I notice is that you seem to be having more RERA events than I normally see. They do see to occur before you wake up. That is something to watch for.

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theres126 +0 points · 2 months ago Original Poster
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theres126 +0 points · 2 months ago Original Poster
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theres126 +0 points · 2 months ago Original Poster
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Sierra +0 points · 2 months ago Sleep Innovater

I think you are getting closer to some good settings. From where you are now I would make the following changes.

  • Increase the minimum pressure to 7 cm (I think currently at 6 cm)
  • Ramp Time: Auto (You currently seem to have it in a timed ramp)
  • Ramp Start Pressure: 7 cm (Currently it looks like it is set at the default 4 cm, which is low)
  • EPR Level: 3 (your current setting I think, but just check it)

Those settings should improve your comfort level in going to sleep.

You may be getting some mouth leaks. However many of them look like the mask is moving around and leaking for short periods of time. At 23:20 and 1:40 there are what looks like a mouth leak. They tend to be longer and have flat tops. You might want to try 3 pieces of tape vertically if it is only 1/2" wide to see if that helps. I use one horizontal piece of tape, but it is 1" wide. You are not getting too many leaks over 25, so overall it is not real bad. It may be affecting your AHI some, and your sleep quality some. I have forgotten. What exact mask are you using?

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theres126 +0 points · 2 months ago Original Poster

Hi- Thanks. I’ll try those settings. Out of curiosity, what would changing the ramp start pressure to 7 and minimum pressure to 7, instead of 6, do?

I usually fall asleep pretty quickly. It’s the staying asleep that I have a hard time with. I wake up several times a night.

I have the dreamwear mask. Seems the best way to keep it from leaking is to just stay sleeping on my back last night, but that’s hard to do

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Sierra +0 points · 2 months ago Sleep Innovater

The reason for setting the minimum pressure to 7 cm is so you can set the Ramp Start pressure at 7 cm. When the ramp start pressure is 7 then the EPR on Ramp Only will bring the exhale pressure down to the minimum of 4 cm. So you get the maximum inhale of 7, and minimum 4 on exhale right from the start. That should feel more comfortable. The other reason is that your machine is bringing up pressure fairly quickly after the ramp is over. You may as well get it up a little higher sooner. It may avoid some apnea events. And, with the ramp set to Auto, the ramp period will only last until you go to sleep. If you are slow going to sleep then it lasts longer.

I see you are waking up at maximum pressure or close to it. The next step may be to lower max pressure some if you can get away with it lower, without AHI going up.

On the mask leaking, one of the things I do is use a satin pillow protector. I think it lets my head and headgear slip around better without pulling the mask part off my nose and causing a leak. The other thing I do is try to sleep with my head on the bottom corner of the pillow so the mask kind of sticks out from the edge of the pillow. When I roll over, I go to the other side bottom corner. Which version of the DreamWear are you using? Nasal pillow, or nasal? I think they include or sell covers for the side tubes as options. I think they are intended to prevent marks on the face, but perhaps they might let the mask slide easier on the pillow without dislodging it.

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