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Old Steve - Therapy Adventure
#1
Old Steve - Therapy Adventure
I have been using CPAP for about 22 years...in all that time I have never really felt good.  Got OSCAR a while back and can see that the AHI reports from the CPAP machines don't mean much.  Most of the 22 years I have been using a nasal mask.  I am trying to use a FF mask as I am a big time mouth breather.  Anyway, here is an average night with the FF mask.  I have been as low as 1.19 AHI, but that was for one night only and since then was back in the 3.5+ area most nights.  With the nasal mask I got great AHI readings, but I think that half the time I just had air blowing through my mouth.  I also must have had many arousals with the nasal mask too as I actually felt worse when I used it.  Anyway, here is an average night with the FF mask. 

I have varied the pressure as high as 10 and as low as 7, (I had my best AHI reading at 7 pressure and 2 EPR)  I normally have the humidifier set at 2-3.  I also use a soft collar.

Any ideas?


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#2
RE: Still Feel Tired After all This Time
Sure wish I could help you out some, but I don't have the knowledge. It's amazing that you have stuck it out for so long. 

I got my machine back in Sept. of 2018. I gave up on it several months ago, and I don't feel any better or any worse. All that I do know, is that I'm sleeping just fine thru-out the night. 

Others with much more expertise will be along soon to help you out.
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#3
RE: Still Feel Tired After all This Time
Hi Steve - I won't claim to be a super-expert but I see two things.
1) Look at the obstructive apneas in your chart. Several appear to be clustered together, which indicates "positional apnea" which is where you cut off your own airway by tucking your chin. Think of a garden hose, which you shut off by kinking the hose back 180 degrees on itself. Additional pressure will not help. Best treatment seems to be a soft cervical collar. There is a wiki article (see the black band at the top of this page) that explains the details.
2) Your minimum inhale pressure may be too low. Per your chart, minimum is set at 8 and the average pressure is 11.4. Typical guidance here is 2 below average, so I suggest a minimum of 9.4. Try that for a few nights and see what happens.
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#4
RE: Still Feel Tired After all This Time
I already use a soft collar.  My average pressure normally runs anywhere from 8cm to almost 12cm.  I will raise my pressure to 9cm tonight.
 
Is it possible that the tighter FF mask pushes in on my lower jaw and is actually causing a lot of the OA's?  When I was using my nasal mask I had AHI reading as low as 0.13 and an average of perhaps 0.50.  Of course I had way to many mouth leaks. I tried tape, but could not get the nasal mask to seal.  Since using the FF mask the lowest AHI I have had was 1.19 and that was at 7cm and a 2 EPR. I thought that I had found the sweet spot.  The next two nights at same setting I was back up in the 3.5 range.  Go figure...
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#5
RE: Still Feel Tired After all This Time
Are you sleeping on your back?

Gravity can then make your to tongue drop back and block your airways...
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#6
RE: Still Feel Tired After all This Time
I sleep side and back both.  I ran the pressure from 8cm up to 9cm last night and tried to stay on my side.  Whatever I did it didn't help much





   
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#7
RE: Still Feel Tired After all This Time
It's only the first day on 9cms. Give it a week to see how things settle down. 
I think it is always interesting to look at the Events Tab which gives the duration of eash apnea in seconds. With clusters that by definition are grouped tightly together, they almost act like one large apnea, say you get 5 apneas grouped together of say 15 seconds each, that gives a total of 75secs or 1 minute 15 seconds potentially without any oxygenation. I have had this sort of situation (and worse) and felt pretty grim afterwards. This is why great attention must be paid to these.

In your last screen shot, you have not however had too many clusters this time, as compared with your first post. So give yourself time to get used to the new minimum pressure settings.

Re your comments on lots of OAs, a FFM was not suitable for me, and had bunches of OAs, whilst slightly better with a nasal mask, a new phenomenon arrived, terrible so called "mask leaks", which were not in fact mask leaks, but mouth leaking. Spent months with different tapes, but no improvement. What's going on?

Long story short, use 5 cms tape and make sure edges of your mouth are well covered. Found that air was tracking along folds in my skin on the edges. Now been 100% good for about a good 6 months.

My personal experience my not be of particular help as we are all different, but maybe may help a bit.
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#8
RE: Still Feel Tired After all This Time
Hi Old Steve,

Tour name appears on your chart.

I stuck to my Hybrid Universal (full face mask) because i felt I got deeper sleep.

Your max on Oct 31 -14.34 cm
Oct 27 -19.98 cm

Is that because you went on your back?

Like clownbell said your minimum pressure is set to low. I would increase minimum pressure to 11, by 1 cm a day and see how that goes. If you increase the EPR to 3 from 2, I would increase the minimum by an additional 1 cm.

I did notice central apenea events when the pressure was high, hopefully that stays true.
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#9
RE: Still Feel Tired After all This Time
As mentioned by KeepSmiling regarding your screenshot - your actual name is showing on the top two lines.
Trim or edit screenshots where necessary to remove or hide things that can personally identify you. 

As Expat31 mentioned, give the change a week for your body to adapt to it before deciding if it worked or not.

Also only make one change at a time to get an accurate assessment of what works and what doesn't, making multiple changes at once makes it hard to know what works and what doesn't - again a week between changes to allow the body to settle in to the adjustment before deciding if it made things worse or better.

How many hours a night do you sleep? (most people need 7 to 9 hours of quality sleep per night)

As a side sleeper do you come fully awake to move the CPAP hose when you roll over?

I found as a side sleeper I subconsciously woke to a level of "awareness" to move the hose, this actually disrupted my sleep resulting in poor quality of sleep for the night.
If this is occurring for you as well you will need to look at adjustments other than just machine pressures until you are consistently able to sleep through the night undisturbed.
- They are not spelling/grammar errors.. I live in Australia, we do it differently Down Under  Big Grin -
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#10
RE: Still Feel Tired After all This Time
(10-28-2022, 05:40 PM)Old Steve Wrote: I have been using CPAP for about 22 years...in all that time I have never really felt good.  Got OSCAR a while back and can see that the AHI reports from the CPAP machines don't mean much.  Most of the 22 years I have been using a nasal mask.  I am trying to use a FF mask as I am a big time mouth breather.  Anyway, here is an average night with the FF mask.  I have been as low as 1.19 AHI, but that was for one night only and since then was back in the 3.5+ area most nights.  With the nasal mask I got great AHI readings, but I think that half the time I just had air blowing through my mouth.  I also must have had many arousals with the nasal mask too as I actually felt worse when I used it.  Anyway, here is an average night with the FF mask. 

I have varied the pressure as high as 10 and as low as 7, (I had my best AHI reading at 7 pressure and 2 EPR)  I normally have the humidifier set at 2-3.  I also use a soft collar.

Any ideas?

I hesitate to respond to many threads because there are people here who have really analyzed data and can give better direction.  But since I am a member of the 20+ year CPAP club, I find it so troubling that after 22 years you have never felt good.  The only thing I can say is wow.

I am hoping that your move to a FFM will finally bring some results.  I have always worn a FFM and I am one of the lucky ones because it has always worked well for me.  The newer ones are better yet; it is nice not to have forehead indents anymore.  If there is one major positive in your story it is the ability to wear a FFM without the massive leaks.  Your leak numbers are stellar.

I spent 10 years without even knowing what AHI meant as there was no such thing as data.  I've also spent years looking at data and tweaking my machines chasing that elusive perfect AHI.  Fortunately I now have an ASV machine, should be standard issue, and my numbers are great, but I still fall into the AHI trap.

The objective is to feel good, feel more refreshed.  As years go by that bar might get lower, but how you feel has always been the objective.

I was recently reminded how important bed pillows can be.  I changed pillows and wanted to use only one.  My numbers doubled.  I thought it was nonsense since I had a do-all machine and it was all about the correct therapy.  But going back, there was a time when pillows were an important part, I started to make adjustments and found a good combination and now things are better than they were 6 months ago.  With all the advancements in machines, it sounds stupid, but it worked.

I also wear a soft collar.  I have found that it doesn't last forever, actually not very long, and different heights and firmness work better than others.  As it is used over time the support can diminish.  For some people It can be a bit of an art to get the right adjustment so it supports the chin without too much pressure on the throat.

Good luck and don't give up, after 22 years of fighting it, I think you are getting closer to feeling good.

John
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