Doc says 20% don't get better on CPAP

[mikeandtina59]

Greetings,

Just came back with a follow-up from my doctor. I've been on CPAP for six weeks but don't feel any better. She raised my pressure and said to come back in two months. My AHI is now low - 2.9, but I still have continued tiredness and mental sluggishness throughout the day, abating somewhat around 5:00.

But what really concerns me is her statement that: 20% of CPAP users do not get better because there is residual brain damage from untreated sleep apnea.

Can anyone speak to this statement? I appreciate any and all comments.
Thank you. TIna

[BlackSpinner]

I have never seen that stat before. Plus brains do heal or rework themselves. But it can take time.

What other things have they tested for?

[djr1215]

I'm on my second sleep doc (2 different towns), and one gave me a stat of 10% and the other 20% - still having daytime sleepiness and fatigue. That's why we have meds like Nuvigil. My average AHI is .5 and I still have sleepiness during the day and evening.

[mikeandtina59]

Thank you for your replies!

Do you take Nuvigil and does it help - hope you feel better. Are there lots of side effects?
The doc did mention that there are meds in case the CPAP doesn't work.

Also, the doc also took blood and is checking my Vit D., iron, and B-12.
I am also wondering if I have a circadian sleep disruption - so have been researching that.

Tina

[chunkyfrog]

BS. Any doc that throws in the towel that quickly you don't need.
Get a new doc if this one doesn't want to keep trying.

[archangle]

BS. Any doc that throws in the towel that quickly you don't need.
Get a new doc if this one doesn't want to keep trying.

That's rather harsh. The number might well be true.

Welcome to the board, Tina.

Even if you're one of the persons who don't get improved brain function with CPAP, you should still continue because without CPAP you'll get worse. You'll also continue to suffer from damage to the heart and other organs without CPAP. Your general health should improve as well with CPAP.

The doctor didn't say to give up. She said that the therapy has its limits.

Tina, even if the number is correct, remember 80% do get better in terms of brain function. Lots of people here report that it may take several months before they feel a lot better. Keep at it. It will probably help you in several ways, and not doing CPAP will probably do further damage to your health.

You can also just be in the "habit" of being tired. You get so used to being tired that you mope around the house and settle down and do nothing. After I fixed my CPAP settings I found that if I broke out of my "tired all the time" routine, I actually do have more energy.

[robysue]

Greetings,

Just came back with a follow-up from my doctor. I've been on CPAP for six weeks but don't feel any better. She raised my pressure and said to come back in two months. My AHI is now low - 2.9, but I still have continued tiredness and mental sluggishness throughout the day, abating somewhat around 5:00.

Six weeks is really not that long. Yes, many, maybe even most (in the sense of > 50%) of new CPAPers seem to feel better in six weeks. But some of us just have less luck and/or more adjustment issues.

I'm now almost nine months into therapy. I've now managed to get back to feeling as good as I felt pre-CPAP on most days, and a bit better on some days. But the better is NOT related to daytime sleepiness. No, at this point, the only things that I can truly credit the xPAP for improving are an occasional hint of feeling almost refreshed when I wake---a feeling that started slowly disappearing about a year or two before starting CPAP, and the almost total disappearance of the low-grade chronic pain in my hands and feet, which had been routinely written off as "minor arthritis" by the docs for several years. Somehow the xPAP, along with a draconian approach to nasal congestion now that allergy season is here, seems to have done wonders in reducing the level of generalized inflammation throughout my body, and hence my hands and feet no longer hurt any where near as much.

Then again, I had no real daytime sleepiness before starting CPAP, although I did have fatigue. Shortly after starting CPAP therapy, I experienced a very severe crash and burn in terms of my overall ability to function: I developed severe daytime sleepiness at a level that I've never experienced---not even when I was pregnant and thought I was sleepy all the time. For the first time in my life I became worried about falling asleep at the wheel, and I could not keep my eyes open during meetings. And my fatigue levels skyrocketed right after starting CPAP. Major brain fog of a sort that I've never experienced before also started about a week or two AFTER I started on CPAP. Wonder what your doc would make of all that?

At any rate, during the last four or five months, there has been some very slow and not particularly steady progress in my beginning to feel "better" in the sense of not feeling as bad as I did right after I started CPAP in terms of the daytime sleepiness, daytime fatigue, and fog brain. In the last month or so, the days where I feel more like my old functioning but somewhat fatigued, pre-CPAP self have finally started to outnumber the days where I feel like something the cat threw up. I'm hoping that maybe by the end of the summer those mornings of feeling "almost refreshed" will turn into waking up genuinely refreshed and that most of my days I'll be no more sleepy than I was pre-CPAP and perhaps less fatigued than I was pre-CPAP. But most of all, I hope that by my one-year anniversary of xPAPing, that the fog brain will have lifted for good. ...

So if you are only six weeks into therapy and feeling about the same as you did before CPAP, keep on working at it and it SHOULD begin to pay off sometime: Even outliers like myself eventually notice SOMETHING positive about xPAP if they don't give it up and throw the machine in the closest.

[jnk]

. . . her statement that: 20% of CPAP users do not get better . . .

Docs consider patients to be 'successful CPAP users' even when the patients only use it most nights for 4 hours or more. That is not going to solve excessive daytime sleepiness for a good percentage of patients, so naturally the residual-sleepiness numbers will be high for that reason. Not to mention the people with limb-movement problems and other problems affecting their sleep who also happen to have OSA being well-treated with CPAP.

In my opinion, the important thing for patients to know is that (1) optimizing our PAP therapy and then (2) optimizing our sleep hygiene has a high likelihood of helping our sleepiness--and those are things that are up to US as patients more than being up to our docs.

One study made this significant point:

"Among participants who reported excessive sleepiness at baseline, as measured by the [Epworth Sleepiness Scale], those whose sleepiness resolved after treatment used CPAP, on average, about 1 hour more per night than those whose subjective sleepiness did not resolve."-- http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1978355/

[mikeandtina59]

Thanks very much for the peptalk - everyone! I am (and will) continue with my therapy. I have been blessed that my adjustment to CPAP has been minimal and that I am not struggling with mask leaks or other problems - I am using it six to seven hours with minimal waking at night.
I'm just disappointed that I'm not feeling better particularly since my AHI is so low.

In any event, I'm pretty persistent so I won't be giving up soon!


Tina

[BleepingBeauty]

BS. Any doc that throws in the towel that quickly you don't need.
Get a new doc if this one doesn't want to keep trying.

That's rather harsh. The number might well be true.

I don't think it's harsh at all. I think chunkyfrog's right on, and I call b.s. on Tina's doctor, too.

Even if that statistic is true, I dare say it's because doctors like this one (and/or DMEs) don't offer the kind of help and support the user needs in order to be successful with this therapy. It's easier to write a script for a pill than to make the effort to discover what's not optimal about the therapy.

My first sleep doc was quick to suggest Provigil when I was still tired after many months of using my original (dumb) CPAP. Tried to tell me that while I'd gone undiagnosed, I'd likely done damage to my brain that couldn't be reversed. Pure b.s. Since I left him in the dust and then bought my ASV 18 months ago, I sleep like a normal person again, my data looks good, I'm not tired during the day, and my brain once again functions like it used to.

Tina, it does take time to feel the effects of good treatment, so hang in there.

[GumbyCT]

But what really concerns me is her statement that: 20% of CPAP users do not get better because there is residual brain damage from untreated sleep apnea.

I take that to mean folks who weren't dx'd in time; before significant damage happened. Did she say you are in that group?

I don't know your pressure but do you have any trouble trying to exhale against it?

[mikeandtina59]

Oh, thank you, thank you, Bleeping Beauty - I am hopeful now!
But what is the ASV that you refer to...?

[kteague]

In my mind that 20% likely includes not only those with brain damage, but also those who aren't consistently diligent about their treatment, those whose data has not been monitored or have not had adequate followup to be certain their treatment is therapeutic, those who have never allowed themselves extra sleep time to recouperate or adequate nightly maintenance sleep, those with lifestyles not conducive to feeling at their best, those with other health issues, and those with other sleep disorders like limb movements, or maybe even undiagnosed narcolepsy. So my questions is, of that 20%, how many that don't get better really and truely can't get better? Yeah, I believe there is a number who find themselves still struggling after all their best efforts. I just don't take much stock in percentages where the potential for variables is so great.

[BleepingBeauty]

Oh, thank you, thank you, Bleeping Beauty - I am hopeful now!
But what is the ASV that you refer to...?

You're most welcome, Tina.

ASV stands for Adaptive Servo-Ventilation. Basically, it's a fancy machine to treat OSA and central apnea, both of which were evident in my sleep studies. When I joined the forum, I had no idea that ASV machines even existed. For that matter, I didn't even know that I had central apnea. (Centrals are a neurological issue - a disconnect between the brain and the respiratory system. Your airway is open, so you're physically able to breathe, but you don't make the effort to do so.) The ASV is able to raise the pressure very quickly (unlike an APAP, which raises the pressure very slowly when it senses an event, in an effort to head off more events), to kinda force you to breathe when you're able to but don't.

Not long after I joined the forum, I was encouraged to post the results of my sleep studies. Only then was I advised by the smart folks here that an ASV might be the machine I needed to treat both my OSA and centrals. But my board-certified sleep doc wouldn't write me a prescription for that kind of machine (he said I "didn't need it" ), so my only option was to search for one on CraigsList. Took me several months, but I finally got lucky and found "Houdini" (the name I gave my machine, 'cause the treatment is like magic! ) about 18 months ago, and my daytime sleepiness disappeared shortly thereafter. Life is good again.

P.S. Why not register for the forum? It's free, there's no spam to worry about, and people will then be able to send you a PM (Private Message). When you register, please go to the User Control Panel (top left of the page) and fill in your profile. Choose your equipment from the drop-downs (carefully, as some names are similar) and list them in TEXT. You can list other pertinent therapy info (like your pressure setting(s), exhale relief, etc.) in the Comments section. Once that's done, all of your equipment info will be included in each of your posts (like mine is, below), and forum members will be better able to help you.

[BleepingBeauty]

In my mind that 20% likely includes not only those with brain damage, but also those who aren't consistently diligent about their treatment, those whose data has not been monitored or have not had adequate followup to be certain their treatment is therapeutic, those who have never allowed themselves extra sleep time to recouperate or adequate nightly maintenance sleep, those with lifestyles not conducive to feeling at their best, those with other health issues, and those with other sleep disorders like limb movements, or maybe even undiagnosed narcolepsy. So my questions is, of that 20%, how many that don't get better really and truely can't get better? Yeah, I believe there is a number who find themselves still struggling after all their best efforts. I just don't take much stock in percentages where the potential for variables is so great.

Agreed, Kathy. You make very valid points (as usual).