Thinking about those with good AHIs who still feel lousy

[49er]

I have a little of this going on in myself. I have a great AHI every night, but I never did think that AHI's were my problem. PAP HAS done me a world of good including the following:
1. cured nighttime LPR
2. cured nocturia
3. feel somewhat better generally

However, I still have sleep issues because of my stubborn insomnia. But I think that the PAP has even helped somewhat with that. I realize I cannot expect it to do everything.

49er - I think what Dr. Park may have been talking about is that some people have extremely sensitive nervous systems that make it difficult to adjust to PAP masks and machines. I had a month-long struggle with this, culminating with my giving up PAP for exactly 2 days. That was as long as I lasted without it. I quickly realized that I felt much better with it even if it means a little more difficulty getting to sleep. Since then, I continue to do much better. Now I am totally hooked on it. I cannot imagine ever giving it up again.

I still do have my little issues. For instance, I must have several different masks. I can only use a particular mask for 4 or 5 days at most. Then I need to switch to another, then back again or to another. It seems like they all have different pressure points. What I really think is going on is the insomnia is interfering with my therapy. It is the insomnia that causes me to find fault with the masks after having trouble getting to sleep. I read the book, Sound Sleep, Sound Mind, that Robysue recommended. It is the best book about insomnia I have ever read.

So I believe that, for the kinds of people you described in the title of the thread, there are other health issues going on with them and PAP can only fix what it can fix.

PEF,

Here is what he said on this site which is more in line with Julie's topic.

http://doctorstevenpark.com/index.php?s=compliance

"There are many patients that are 100% compliant with CPAP, using their machines 100% of the time they are sleeping, with no leaks and a low AHI, and still feel no better. Sometimes they can even feel worse than when they don’t use CPAP."

But for some reason, I thought he said more about this but it looks like that isn't the case.

[49er]

I'm two years in and still feel lousy. Bought a "data capable" machine, bought a laptop so I could use "sleepyhead", posted many screenshots of "sleepyhead", adjusted pressure up, adjusted pressure down, EPR on, EPR off, blood work for D, thyroid and testosterone (all normal). I still awaken feeling like people should feel at the end of the day. Lost my job, no insurance, and at this point no hope. Sleep apnea has beaten me.

Have you looked into whether you qualify for medicaid under the ACA?

49er

[Noctuary]

I'm two years in and still feel lousy. Bought a "data capable" machine, bought a laptop so I could use "sleepyhead", posted many screenshots of "sleepyhead", adjusted pressure up, adjusted pressure down, EPR on, EPR off, blood work for D, thyroid and testosterone (all normal). I still awaken feeling like people should feel at the end of the day. Lost my job, no insurance, and at this point no hope. Sleep apnea has beaten me.

Have you looked into whether you qualify for medicaid under the ACA?

49er

I haven't.

[Lucyhere]

http://doctorstevenpark.com/index.php?s=compliance

"There are many patients that are 100% compliant with CPAP, using their machines 100% of the time they are sleeping, with no leaks and a low AHI, and still feel no better. Sometimes they can even feel worse than when they don’t use CPAP."

I don't feel worse, but I don't feel any better. I do feel better knowing I'm getting sufficient oxygen, but that's it.

[palerider]

I had essentially no symptoms when my apnea was diagnosed. On treatment I have an AHI below 1 every night. I feel far more rested if I sleep without PAP. I dream and I sleep through the night.

you dream in any case. you *remember* your dreams when your sleep is interrupted.

Indeed the sleeping brain is not capable of memorizing new information; it needs to awaken to be able to do that," explains Perrine Ruby, Inserm Research Fellow.

https://www.sciencedaily.com/releases/2 ... 085915.htm

so that's indication that without PAP, you're not sleeping as well.

[Wulfman...]

Hi, wanted to see how others feel here - please don't re-post already replied-to notes re fatigue, etc. - I'm just wondering in general about this...

Could there be a subset of [bpeople who find that ]while Cpap has done a good job (as seen on e.g. Sleepyhead) of addressing their apnea, still don't feel great either for long or at all[/b] after also addressing obvious factors like hygiene/hours/alcohol/meds, too-low pressure settings, weight loss, etc. etc. and don't know where to turn AND this also presumes they've been checked out for clinical depression, etc?

Is there possibly some genetic, neurological or other reason that may just not have been found?

This is absolutely not meant to ask or give 'permission' for anyone to go off their C/Apap, because I think it's needed medically as seen by results of 02 sats staying above danger levels, and cardiovascular benefits presumably being seen, if only by doctors on testing... but are all the people who aren't feeling the benefits much all 'just' depressed, nuts, dishonest either with themselves or us about other factors?

Any ideas about where to start looking for new answers, maybe out of the box?

Sure. Over the years, I've seen many cases of people using APAPs/Autos in ranges of pressures who have EXCELLENT AHI numbers, but still feel like they're not well-rested. For many, the changing pressures during the night can be bumping them out of the needed deeper sleep stages and into lighter ones. They probably won't have as many events in lighter sleep stages so the "numbers" can look great. But, the user is not getting good sleep quality and the needed deeper sleep stages.


Den

.

[Julie]

Whatever works - people should experiment if what they're doing isn't helping.

[palerider]

For many, the changing pressures during the night can be bumping them out of the needed deeper sleep stages and into lighter ones. They probably won't have as many events in lighter sleep stages so the "numbers" can look great. But, the user is not getting good sleep quality and the needed deeper sleep stages.

I'm curious, do you have any actual evidence of this, or is it just theory?

(zeo data comes to mind, or EEG in a lab setting).

[Thatgirl]

Some of us don't find "the mask" right off the bat.
It is not unreasonable to swap back and forth between two or three marginal masks to allow healing of the hurt bits.
Whatever it takes to make the mask workable is worth the effort.
Too bad insurance and our providers often fall short.

The right mask is essential and can be so frustrating! I tried 6 I think before ending up with the Dreamwear. Now I don't even feel the mask, compared to others being downright painful. A little lanolin on the pressure points helps too.

[Thatgirl]

I had essentially no symptoms when my apnea was diagnosed. On treatment I have an AHI below 1 every night. I feel far more rested if I sleep without PAP. I dream and I sleep through the night.

you dream in any case. you *remember* your dreams when your sleep is interrupted.

Indeed the sleeping brain is not capable of memorizing new information; it needs to awaken to be able to do that," explains Perrine Ruby, Inserm Research Fellow.

https://www.sciencedaily.com/releases/2 ... 085915.htm

so that's indication that without PAP, you're not sleeping as well.

Good point. Not remembering dreams could mean you're actually not dreaming because you're never getting into REM. I don't think my sleep is ever that bad, though.

[Lucyhere]

For many, the changing pressures during the night can be bumping them out of the needed deeper sleep stages and into lighter ones. They probably won't have as many events in lighter sleep stages so the "numbers" can look great. But, the user is not getting good sleep quality and the needed deeper sleep stages.

I'm curious, do you have any actual evidence of this, or is it just theory?

(zeo data comes to mind, or EEG in a lab setting).

Why do you keep questioning every damn thing Den says??? It's nauseous already

[palerider]

Good point. Not remembering dreams could mean you're actually not dreaming because you're never getting into REM. I don't think my sleep is ever that bad, though.

you don't have to be in REM to dream, you can dream in any sleep phase, they're more prevalent in REM though.

[Debb]

I feel like rubbish every morning and sometimes can hardly get through the day without an extra 2 hours of sleep. My AHI is always under 2. So tried of feeling tired! When I drift off to sleep I stop breathing, it's scary and the CPAP doesn't seem to be able to prevent it or push through. i just don't know why I'm so tired even though my apnea is apparently treated.

[Holden4th]

On Friday night blocked nasal passages meant I had to give up my mask after about two and a half hours because I don't have a back up FFM. I felt like shit for most of Saturday. Got eight hours straight last night with an AHI of 0.7 and I certainly felt much better. Yes, there is still a feeling of fatigue but it's a hell of a lot better than non-CPAP.

[PEF]

Thanks for posting that article by Dr. parks, 49er. I had not read that one. very interesting.