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

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!

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.

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......

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.

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

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.....

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?