Doc says 20% don't get better on CPAP

jnk wrote:Interesting thought:

http://www.ersj.org.uk/content/34/5/1209.2.full.pdf

I recall reading an article by Dr. Guilleminault in which they studied those with residual EDS on CPAP, and the vast majority of them had PLMS (and I believe improved when that was addressed).

Anyway, I haven't seen this 20% statistic, but even if I did, I would wonder how they measured residual sleepiness, as subjective and objective measures of sleepiness have a surprisingly low correlation.

Clearly there are people whose EDS does not improve or remit on CPAP, and some proportion of them may have residual EDS from their OSA, and some proportion from other sleep disorders. On the other hand, considering EDS is one of the more common symptoms of a bazillion disorders, it isn't that surprising that CPAP can't address other sources of EDS, and the EDS could be wrongly attributed to OSA.

SleepingUgly wrote:

jnk wrote:Interesting thought:

http://www.ersj.org.uk/content/34/5/1209.2.full.pdf

I recall reading an article by Dr. Guilleminault in which they studied those with residual EDS on CPAP, and the vast majority of them had PLMS (and I believe improved when that was addressed).

Anyway, I haven't seen this 20% statistic, but even if I did, I would wonder how they measured residual sleepiness, as subjective and objective measures of sleepiness have a surprisingly low correlation.

Clearly there are people whose EDS does not improve or remit on CPAP, and some proportion of them may have residual EDS from their OSA, and some proportion from other sleep disorders. On the other hand, considering EDS is one of the more common symptoms of a bazillion disorders, it isn't that surprising that CPAP can't address other sources of EDS, and the EDS could be wrongly attributed to OSA.

I agree. And "fatigue" can be even more mysterious than "excessive sleepiness."

As one poster posted on another board:

. . . it's also about managing expectations. Having helped hundreds go though the first stages of their CPAP therapy, I found that they have to know beforehand what to expect. And what not to.

Some people think CPAP will fix everything in their life. Sure, once OSA in under control, a lot of other health problems will improve too. But to truly feel energetic, you also need good food. And good sleep hygiene. And exercise. Some people who go on CPAP, are technically compliant and adhere very well, don't feel great as fast as they expect. With a bit of digging, at times we then find they can improve elsewhere too.

So [take] a holistic approach and see the CPAP as the ignition or key, but not as the only part. Once on CPAP, and you have the hang of it and you've cleared the fog, so to speak, look around you and see what else you can improve. Then you're truly set up for a great ride. -- http://www.sleepguide.com/xn/detail/254 ... ment:81011

That can't be true for everyone. But it is important information for those it IS true for, in my opinion.

tschultz wrote:As one of those "brain damaged" people I had that very discussion with my doctor when I was first diagnosed. I was told that I should see initial changes with heart rate, blood pressure, and metabolism in the first 3-4 weeks. I was told that then over the next 4-6 months and up to a year I should see more gradual changes as the brain heals some of the damage from the continual oxygen deprivation and also some changes in the heart muscles as they return to normal no longer having to jump in seconds from 60 to upwards of 120 bpm to try and compensate for lack of oxygen after a significant dip.

Based on the reading I have done I personally would question the validity of the 20% not getting better and ask of those how many are the result of sub-optimal CPAP treatment settings or other related issues. I know the one thing I did do was to take charge of my own setting in my first week of home trial. Had I left it up to the doctor I would not have things as well controlled as they are and I am still hoping to improve things more. It seems in many cases the medical profession is OK with an improvement in overall well-being and few are willing to put the efforts into making sure treatment is optimized.

I know in my case, now at 166 days of treatment, I am still seeing changes although the changes have slowed down they are still there. I have much more energy, am losing weight, blood pressure has improved and I am able to concentrate and think more clearly than I have in years.

As another of the *Brain Damaged* variety.
When I was diagnosed 16 years ago my first doc told me something similar. He said it could take up to 5 years for my memory to improve and it did to a certain point. It got MUCH better but its still not what i originally was. Perhaps age has something to do with that also. Blood pressure and all that improved immediatly. But 16 years of (Mostly) sucessfull CPAP treatment isn't anything to sneeze at.

lol. I do still sometime take naps but pain doesn't always let me have a full night that often so you have to take that into account, days when I don't have pain I don't need naps and have no problems staying awake. One thing that numbers don't take into account are the variables often involved.

BUT if you look hard enough there are studies and #'s online to fit almost ANY opinion in the medical field so I always take much of those kind of statements with a grain of salt.

But one thing I've learned over the years is there are VERY few doctors that actually know the ins and outs of sleep apnea. Which is scary when its supossed to be their specialty. Now I'm not saying your doc don't know what he/she is talking about but, it seems to me (just my opinion here) telling someone a so called FACT like that isn't very conductive to the positive feeling they should be giving you towards your therapy.
I would really frown on my doc being so negative sounding. But then again I don't see my sleep doc but once a year lol. I tell HIM How my therapys going ;p
Only reason I even HAVE a sleep doc is cause insurance insisted. My PPE asks how my CPAP therapy is going every visit. And hes slowly educating himself on AHI #'s and such as he gets more paitents on it. At least he listens and will have a intelligent conversation with you unlike my so called sleep doc.

SleepingUgly wrote: Anyway, I haven't seen this 20% statistic, but even if I did, I would wonder how they measured residual sleepiness, as subjective and objective measures of sleepiness have a surprisingly low correlation.

I suspect they got this stat from counting patients who are on CPAP, have good AHI #s and yet still have high scores on the Epworth Sleepiness Scale.
For instance, my average AHI is 0.5, which would be considered successful CPAP treatment, yet my ESS score is still around 12.

mikeandtina59 wrote: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

Reply:

Tina, I am almost certain that your "doctor" elaborated more on saying "20% of CPAP users do not get better because there is residual brain damage from untreated sleep apnea". But for some reasons you are not including it in your posts.

I agree that numbers can be, and have been in the past, tweaked beyond all recognition
--by researchers with a paycheck coming from a source with an agenda.
(Much drug research shares this dark cloud.)
We must remember that CPAP is THERAPY; and like physical therapy, improvement is dependent on many factors,
and may take a long time for significant change. I believe that any improvement at all is desirable, and should not be called,
"no improvement", simply because it takes longer than the clinician is willing to follow up and address new issues.
Little or no discernible improvement, even with dedicated therapy, may very well call for a consultation with a fresh mind.
No one provider is infallible-especially the ones who believe they are.
A polite request for a referral might get the ball rolling. As long as the patient wants to, or believes, he can get better, why give up?

avi123 wrote:

mikeandtina59 wrote: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

Reply:

Tina, I am almost certain that your "doctor" elaborated more on saying "20% of CPAP users do not get better because there is residual brain damage from untreated sleep apnea". But for some reasons you are not including it in your posts.

What the hell is your problem, avi? How can you be "almost certain" of anything when you weren't a party to the conversation between Tina and her doctor? You make a helluva lot of assumptions around here.

My sleep doc didn't use the 20% figure, but he told the same damned thing. And that's ALL he said about it (besides pushing Provigil at me).

IMO, many sleep docs are too time-constrained or too lazy to put in the effort needed to help the user attain truly effective therapy. "Here, take this pill."

chunkyfrog wrote:I agree that numbers can be, and have been in the past, tweaked beyond all recognition
--by researchers with a paycheck coming from a source with an agenda.

To quote Mark Twain: "There are three kinds of lies: lies, damned lies and statistics."

Not saying all stats are lies---I am a mathematician, after all. But it is truly amazing and occasionally frightening, just how often statistical data is either misinterpreted or misapplied.

Well, I'd much rather have a doctor that admits to the possible treatment problems than one who has the "shut up and do as you're told" attitude.

It sounds like this particular doctor could have made Tina feel a little better about it. And explained that 80% do get better and that those who don't get treatment get worse.

BleepingBeauty wrote: What the [bleep] is your problem . . . You make a [bleep]uva lot of assumptions around here. . . . My sleep doc . . . told the same [bleep]ed thing. . . .

Well bleeped, Beauty.

jnk wrote:

BleepingBeauty wrote: What the [bleep] is your problem . . . You make a [bleep]uva lot of assumptions around here. . . . My sleep doc . . . told the same [bleep]ed thing. . . .

Well bleeped, Beauty.

IMHO, there are a [bleep] lot of assumptions made around here daily. People see and hear what they want. Throw in OSA and what you have is a rumor mill.

jnk wrote:

BleepingBeauty wrote: What the [bleep] is your problem . . . You make a [bleep]uva lot of assumptions around here. . . . My sleep doc . . . told the same [bleep]ed thing. . . .

Well bleeped, Beauty.

GumbyCT wrote:

jnk wrote:

BleepingBeauty wrote: What the [bleep] is your problem . . . You make a [bleep]uva lot of assumptions around here. . . . My sleep doc . . . told the same [bleep]ed thing. . . .

Well bleeped, Beauty.

IMHO, there are a [bleep] lot of assumptions made around here daily. People see and hear what they want. Throw in OSA and what you have is a rumor mill.

True that.

I once worked at that mill.

The benefits stink.

Ok, let's not waste time and just be true to our mission.

I've been quietly (until now) following this thread too. I'm stunned at the audacity and insensitivity of that last comment. Just wow. Since Avi decided to "foe" me the last time I snapped at him for being rude and offensive, I won't bother to preach to the choir about how incredibly wrong that statement is about the vast, vast majority of people. I really empathize with those of you who aren't getting the relief you hope or expect while on xPAP, and that goes double for many of our posters who are suffering from a combination of sometimes-reinforcing medical problems.

I know I first came here because I saw it as a support community -- and I definitely didn't feel like I was getting support from my medical team. And if people just want to vent a little, I say more power to them. At least you'll get some sympathetic ears here, and that mental therapy will on some days be even more helpful than the physical therapy you hope to get from your xPAP!