Thinking about those with good AHIs who still feel lousy

[Julie]

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 people 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 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?

[Lucyhere]

Raises hand.

Do you fall into this category?

[Lucyhere]

And, I doubt that anything is going to change in your lifetime or mine.

[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.

[chunkyfrog]

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.

But using cpap every night would help you get used to cpap.
Even after all these months, you should no longer have a non-cpap reference point.
Every night you cheat is just making it harder on yourself. (Meaning your heart, brain, etc)

[49er]

Dr. Park had an article about this on his website but unfortunately, I can't find it. I don't recall him having any answers in particular but it was nice to see a sleep doctor recognizing that this takes place.

[Noctuary]

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 people 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 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?

Gosh, I don't know anyone like that.

[story1267]

I fall into that category a bit. In my case it's taken quite a while to determine other causes of fatigue and I've taken some steps....

I had surgery to correct a deviated septum and enlarged turbinates. My breathing is much better. The recovery period messed with my numbers a bit but I'm nearly 100% healed and will focus more on my pressure settings / events in the upcoming weeks.

I've seen a rheumatologist and had much blood work which determined the beginning stages of an auto-immune disease. I've been following the Autoimmune Protocol diet for 42 days now and have seen much improvement in symptoms and the improvement is also reflected in my blood work results.

My suspicion is that many folks would improve their overall health, fatigue levels, and sleep quality if they would make some dietary changes. But I also know that many folks are unwilling and/or unable to do so (myself being one of them for a really long time).

[Mabutu]

I'm glad Julie brought this up

[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.

But using cpap every night would help you get used to cpap.
Even after all these months, you should no longer have a non-cpap reference point.
Every night you cheat is just making it harder on yourself. (Meaning your heart, brain, etc)

I used it for literally months straight and was doing really well, then fell asleep on the couch one night and woke up hours later without it feeling great. That's the only reason I got a reference point without it. After over a year of straight night shifts I've been on days for the last 6 weeks which isn't helping my sleep habits.

[PEF]

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.

[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.

[Julie]

Sounds more like depression has... how seriously are you looking into it (I can't remember way back if you said anything)?

[chunkyfrog]

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.

[kteague]

I can't say I'm one who has done EVERYTHING I could do to achieve feeling my personal best. I have not yet mastered consistently healthy eating and increased physical activity. I'm doing "better" but until I've truly done it all I won't know if my still feeling bad could be more resolved than what treating my OSA and my PLMD has done. While I'm not generally a hypersensitive person, my foray into that life with the RLS/PLMD has made me appreciate the difficulties sensitive people might have in adjusting to the sensations of CPAP use. When my limb movements were not controlled, my nights were torture. In a constant state of sleep deprived agitation, my brain would hone in on sometimes the slightest touch and I would find it unbearable. I've jumped out of bed and frantically pulled off my clothes because if the legs of my pj's touched me for one more second it seemed I would lose my mind. Even now, it will sneak up on me and I'll have to immediately change clothes so at least I'm being touched in a different place, and my mind can get a fresh start. Wearing a mask when starting treatment was not easy. If it wasn't my legs keeping me waking every few minutes, it was the heightened awareness of the mask touching my skin. It was my awareness of the necessity of treating my sleep apnea that for a time intersected with a temporary control of my legs that gave me hope that at some point I could feel better. I can honestly say the mask rarely bothers me any more, and when it does, the degree is tolerable. Compared to how I felt before successfully treating my sleep disorders, I feel like a million bucks. Compared to how I felt before the sleep disorders, I feel like a pile of crap. My heart goes out to those who are always hypersensitive. It adds a layer of difficulty most don't have to deal with. No answers, just compassion. I think the idea of having multiple masks to swap out would have been a godsend during my sensitive times.