CPAP May Not Cure Daytime Sleepiness

[johnnygoodman]

Howdy,

I'd like some discussion on this one. I am skeptical and would like to hear from your personal experience. If Obstructive Sleep Apnea is being VERIFYABLY and EFFECTIVELY treated, and one's AHI is 2 or less with low leaks, I'd imagine that any further tiredness would come from lack of hours or from something unrelated to OSA.

http://www.sleepreviewmag.com/sleep_rep ... -27_05.asp

Last Updated: 2009-05-18 8:00:03 -0400 (Reuters Health)

New research suggests that many patients with sleep apnea continue to experience excessive daytime sleepiness despite treatment with continuous positive airway pressure (CPAP).

According to the report in the European Respiratory Journal for May, 6% of CPAP-treated subjects have residual excessive sleepiness, defined as an Epworth Sleepiness Scale score of 11 or higher.

"In France alone," lead author Dr. J-L. Pepin, from CHU de Grenoble, France, said in a statement, "we have 230,000 patients using CPAP. We calculate that at least 13,800 of those have residual daytime sleepiness."

The findings come from a study of 502 patients from 37 sleep centres who were using CPAP for more than 3 hours per night and were available for 1-year follow-up.

On initial analysis, 12.0% of patients had residual excessive sleepiness at 1 year. After adjusting for possible confounders, including restless leg syndrome, major depressive disorder, and narcolepsy, the prevalence of residual excessive sleepiness was 6.0%.

Younger age and more sleepiness at diagnosis both correlated with residual excessive sleepiness, the report indicates. An Epworth Sleepiness Score of 11 or higher prior to CPAP increased the odds of residual excessive sleepiness by 5.3-fold.

In terms of the impact of residual sleepiness on quality of life, the investigators found that subjects with this problem scored two times worse on the emotional and energy domains of the Nottingham Health Profile than did their peers with a full response to CPAP.

Further research, the authors conclude, is needed to determine if the residual excessive sleepiness changes over time, if it is a risk factor for cardiovascular and other diseases, and if pharmacologic agents can affect outcomes.

Here's where I get the tweet:

http://twitter.com/KeySeller

And if you tweet, please follow me on twitter:

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Johnny

[carbonman]

Without going into boring detail,
cpap has given me my life back.....

every facet of my life.

[Jason S.]

It worked for me, totally got rid of my daytime sleepiness. I was fighting falling asleep at work almost daily (and losing sometimes) and now I rarely even generate a yawn.

[jnk]

I think you hit the nail on the head, Johnny.

If I use my machine for at least 7 hours a night with decent numbers (which, for me, means still more than 5 AHI as reported by my ResMed machine, since it seems to count flow limitations in with the hypopneas) I do OK if my sleep hygiene is otherwise good, I am eating well, exercising well, and living well. CPAP fixes OSA, not life in general. Many people without OSA have sleep trouble, after all, and treating someone with CPAP doesn't change that fact.

If a study includes mouth-breathing leakers using their machine at the wrong pressure for only three or four hours of the night, as far as I am concerned they are not really studying "CPAP users" according to my personal definition. Sleep hygiene and other health issues have to be taken into consideration for any group with long-term sleep issues, since years of it can teach sufferers bad sleep habits.

It is usually the already very unhealthy with severe sleep trouble who get sent for sleep studies in the first place. Solving the core problem doesn't mean there are no other related problems to solve, and it takes time to do that.

The lessons, to me, are that CPAP use has to be documented as effective and as being used properly by a patient according to a reasonable definition beyond "compliance" and that many health issues can affect sleep, just as you say.

[Pad A Cheek]

Johnny,
I would like to comment on this one. CPAP usage is not the same for all people.
I have been amazed at the lack of knowledge that the general CPAP users have regarding their therapy. Most I have the privilege of talking to often do not know their machine manufacturer and mask name. They have no idea that they have options for optimizing their therapy, and I am not talking about padding for their headgear.
They are amazed that there is available software, smart cards, data capable machines, APAP, Bi-PAP, and other advanced machines. They think if they put the mask on at night they are doing everything they can to stop their SNORING. Some only are trying to relieve this for their partner and have no idea the consequences of untreated OSA.
So, that being said, I imagine there are many many people still sleepy after hosing up every night without receiving effective therapy.
Education is the key and the sleep centers are beginning to get on board with actually following the patients and asking questions because the laws are changing regarding requiring accreditation. We are in the transition phase as I see it, and the patients needs are beginning to be considered.

Johnny thank you for all you do here and your support of the patients is unsurpassed.

Karen Moore

[BleepingBeauty]

Howdy,

I'd like some discussion on this one. I am skeptical and would like to hear from your personal experience. If Obstructive Sleep Apnea is being VERIFYABLY and EFFECTIVELY treated, and one's AHI is 2 or less with low leaks, I'd imagine that any further tiredness would come from lack of hours or from something unrelated to OSA.

There's the rub, Johnny. The article makes no mention of EFFECTIVE treatment, just treatment. Any machine can verify its use by compliance data, but unless the machine is data-capable, who knows how effective the treatment is?

I'm one of the unlucky ones who's still experiencing daytime sleepiness, but I'm not at all sure that my treatment is effective. I only acquired a data-capable machine a few weeks ago, after 18 months of being patted on the head and kept in the dark.

[ozij]

The findings come from a study of 502 patients from 37 sleep centres who were using CPAP for more than 3 hours per night and were available for 1-year follow-up.

If I were to run that study I would:
1. Drop all subjects who used cpap on an average of less than 6 hours per night, every night
2. Look for at the AHI -- as measured on the person's machine, at night, for a week or even a month.
3. Check for leaks -- and their sources.

And I would compare the group of min. 6 hours usert to a similar one - with no daytime sleepiness.

After that, we can start talking.

Which is basically what you said, Johnny.
And Jeff.
O.

[Songbird]

If Obstructive Sleep Apnea is being VERIFYABLY and EFFECTIVELY treated, and one's AHI is 2 or less with low leaks, I'd imagine that any further tiredness would come from lack of hours or from something unrelated to OSA.

I'm no scientist, but I completely agree with you, Johnny (and everyone else who chimed in). Two things in that article grabbed my attention. First, six percent doesn't seem like a very high number. Second, they gathered info on people using cpap equipment for three or more hours per night. That's ridiculous. Three or more hours? I'm surprised the percentage of those with daytime sleepiness wasn't much higher. If I'm only getting four or five hours a night, I'm certainly going to be dragging during the day. Six hours is barely acceptable, and seven is best (for me).

Also, as I learned here, there are so many things beyond

restless leg syndrome, major depressive disorder, and narcolepsy

that can affect how we feel during the day, and those three things appear to be the only additional conditions considered in the study. After I'd been on the hose for a few months and still felt pretty lousy (meaning low daytime energy, higher-than-acceptable BP and faster-than-acceptable pulse rate), I started looking for other causes. With info I gathered here, especially from Snoredog and DreamStalker, as I vaguely recall, I quit taking ginko biloba, weaned myself off my ADD meds and reduced my caffeine intake (drat!). My BP and pulse are fine now, and my doc and I are pretty sure those things were responsible for the BP and pulse rate. I've also learned that I have lymphedema, which accounts for the low energy. And as I work on lymphedema therapy, I can see my energy level responding. So although the study is kind of interesting, and although this non-scientist making any conclusions about it is laughable, I really don't think the study is anything to hang our hats (or hoses) on.

Marsha

[roster]

A pessimist must have written the title for that article, "CPAP May Not Cure Daytime Sleepiness".

How about "CPAP Cures Daytime Sleepiness In 94% of Users"?

Name the other therapies/drugs/surgeries that have a record this successful!

.........
I have been amazed at the lack of knowledge that the general CPAP users have regarding their therapy. Most I have the privilege of talking to often do not know their machine manufacturer and mask name. They have no idea that they have options for optimizing their therapy, and I am not talking about padding for their headgear.
They are amazed that there is available software, smart cards, data capable machines, APAP, Bi-PAP, and other advanced machines. ...........
Karen Moore

Ditto what Karen said. Given this, I am surprised that 94% are cured of daytime sleepiness. I don't trust the study.

[Guest]

I'm 26 and having been using a CPAP for 3 years now. I love it!

However, I do have major sleep issues - none of which are related to my use of the CPAP.

1) I inherited insomnia. So going to sleep is an issue. (Thanks Dad.)
2) I have bad sleep habits developed during childhood and my teen years - had I been diagnosed with sleep apnea sooner these possibly could've been avoided.
3) As the apneas got worse my habits got worse...I'm still having problems adjusting my life to accommodate this problems.

But when I do sleep (with CPAP) the sleep is resoundingly awesome. And the days/nights that I can get 6 to 7 hours of sleep I'm a wonderful, awake person.

[Velbor]

Before we can get the science right, we have to get the WORDS right, which helps to get the ideas right.

The title of the article cited by Johnny used what I think is very careful wording:
"CPAP May Not Cure Daytime Sleepiness Associated With Sleep Apnea".
The key phrase is "associated with".

PROVIGIL and NUVIGIL are now approved by FDA "for the treatment of excessive sleepiness associated with treated Obstructive Sleep Apnea".

CPAP (or suitable oral mandibular advancement appliances) can remove some or all of the manifestations of OSA during the night, and thereby reduce daytime sleepiness which is "caused by" OSA.

There are, however, "other causes" of daytime sleepiness.
Individuals who have OSA may also have these "other" conditions.
Most well known is Periodic Limb Movements during Sleep (PLMS).
The occurrence of PLMS is reportedly "associated" with OSA.
(This association may simply relfect better diagnosis of PLMS as part of the OSA workup.)
(And in fact it has been reported - I can't find the source at present - that CPAP may worsen PLMS symptoms.)

But I must wonder whether there are other "conditions" which may be "associated" with OSA which may impact sleep quality and daytime sleepiness. I also wonder whether, just like medications which rarely do "only one thing", CPAP does "other things" as well.

My personal experience includes:
--I have used both CPAP and an oral appliance, both with PSG-documented effectiveness. I "felt different" - not necessarily better or worse, but most very certainly different - following each of the two therapies. I conclude that eliminating symptoms of OSA during the night are not the "only" things these therapies did.
--My numerous PSG's over the years, whether without therapy, or with either of my two therapies, continued to demonstrate subnormal sleep efficiency and distorted sleep architecture.

I have both OSA and PLMS, and I receive effective treatment for both (CPAP and medication). I did not exhibit marked "daytime sleepiness" (as measured by the Epworth scale) before treatment, and I am not excessively sleepy now. But whether due to sleep-related issues, or other undefined and undetected causes, I remain "unrested" and "unrefreshed" by sleep, and although not objectively "sleepy", I believe that my overall "sleep disorders" (plural) remain incompletely treated.

I suspect that is because there is no treatment available for some of whatever it is that I "have", and when there is no treatment available, "conditions" are left undescribed and undefined.

CPAP indeed may not always cure (not a very good word in any event) daytime sleepiness, because CPAP, even when documented as effective, is designed only to treat OSA. There are (who knows how many) other "sleep disorders", some of which may well be "associated with" OSA, which "cause" daytime sleepiness.

We have to be very wary of allowing our shared obsession (this is, after all, CPAPtalk, not the competitor TalkAboutSleep) to blind us to the full range of possibilities. We also need to acknowledge that, in addition to the many success stories, there are MANY posters who "give up" or "quit", not necessarily because they are wimps who don't have what(ever) it takes to go the distance to make CPAP work, but because, perhaps, for them, CPAP does NOT accomplish what they very much hoped it would.

[EDIT: A subsequent review of posts shows a significant number of "regulars" on this forum - experienced, stable, knowledegable, compliant, enthusiastic, motivated CPAP users - also report regular or intermittent daytime sleepiness despite effective CPAP therapy.]

[EDIT 2: Haven't found the original research article yet, but note that the study population consisted of people who were available for a 1-year follow-up, suggesting that they had "stuck it out" for at least a year on CPAP. That makes it inappropriate to conclude a 94%-daytime-sleepiness-success-rate for CPAP. We don't know yet how many of the "original cohort" may have dropped out long before the one-year point due to continued daytime sleepiness despite CPAP.]

[EDIT 3: A different article, from 2007: http://www.pubmedcentral.nih.gov/articl ... id=1978355 "Even in the group that used CPAP for a mean nightly duration of 7 or more hours, the percentage that achieved normal values was less than 100% for all outcomes. Why residual sleepiness, both subjective and objective, remains despite ideal CPAP use is unclear. Our study provides an estimate of the prevalence of residual sleepiness in such optimally treated participants. As displayed in Table 3, 8 of 36 participants (22.2%) who displayed subjective pretreatment daytime sleepiness and 12 of 23 (52.2%) who manifested objective pretreatment daytime sleepiness still had sleepiness after using CPAP for 6 or more hours per night. That is, a fifth to a half of the participants we studied had evidence of residual sleepiness, depending on which outcome was assessed, despite what is reasonably regarded as optimal therapeutic use of CPAP. The presence of residual daytime sleepiness after CPAP treatment has been reported previously." ]

Velbor

[Muse-Inc]

Johnny, I've been one of the successful ones regarding daytime sleepiness until recently. I've been using CPAP for naps and nighttime sleep since I got my machine. When I started sleeping well each night and waking up alert and refreshed, my daytime sleepiness disappeared. It's returned with what I'm sure are nightly events. Not as bad as before because my sleep is still much better than before, but I do get sleepy now. The more nighttime incidents, the more I'm sleepy the next day whether from desats or just fragmented sleep is moot as I don't have an efficacy-data capable machine or pulse oximeter to ascertain.

[BlackSpinner]

Younger age and more sleepiness at diagnosis both correlated with residual excessive sleepiness, the report indicates. An Epworth Sleepiness Score of 11 or higher prior to CPAP increased the odds of residual excessive sleepiness by 5.3-fold.

In terms of the impact of residual sleepiness on quality of life, the investigators found that subjects with this problem scored two times worse on the emotional and energy domains of the Nottingham Health Profile than did their peers with a full response to CPAP.

So they started out with more sleepiness, they are young and they are emotional upset. Gee I wonder why? Do you think maybe there should be some help for people receiving cpap?

[Goofproof]

XPAP, hasn't fully stopped my falling asleep after a meal or watching TV, but the reason is mostly my fault. By napping at said times I short change myself of maintaining a normal sleep pattern. It's a life style I can live with, I have nowhere I have to be most of the time, so I can set my limits. I no longer fall asleep at the wheel. My worst problem is missing parts of a show, they are on media so that's not a problem either. jim

[fuzzy96]

and just how many have undiagnosed underlying conditions such as thyroid problems, athsma etc.

the politicsof science ya gotta love it.