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[News] Washington Post Article
#21
Washington Post - it is NO surprise to me that this piece seems ill-informed and poorly researched.  I worked in DC offices for many years and was routinely disappointed by the disinterest in research shown by most of their "journalists" who spoke to me or to coworkers while covering any of our office's projects.  If you had something to point out to them that didn't fit the story they wanted to write, it never made it into print.  Also can't even count the number of times we'd see a piece come out with varying bits of misinformation, opining on what we were doing and why we were doing it, written by someone who never spoke to anyone who had actually been involved in the project they were writing about, they'd just take as fact what they were told anecdotally by second-hand sources.
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#22
Having read the actual paper I think the report in the WP is reasonably accurate. In my view (and I'm not a medical scientist) the study is flawed and does not support the supposed results.
DeepBreathing
Apnea Board Moderator
www.ApneaBoard.com


Bed

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#23
On the one hand we are told by the medics that we are exposing ourselves to stroke and heart attack if we don't use their infernal machine, on the other, I have nearly taken them by the throat saying this is not ******* working, as I am lucky if I get four hours sleep a night using the damned thing.

If as I do you take the mask off when you wake after the 3.5 to 4 hours, should you be lucky enough to fall asleep again, you are surely once again exposed to the threat of stroke etc.
There is no way once I have woken that I can fall asleep again wearing the mask.

When I explained to the medic that it was unlikely I would meet the 4 hour compliance ( a slightly different requirement here), I was told to falsify my records by lying awake while wearing the mask until the 4 hours time compliance was met.

While fully appreciating the problems other people are having, for me I have to ask the question, what is the point.

I should point out that I took myself off treatment for six weeks, I am clearly still alive, I got a better nights sleep, and rarely did I fall asleep during the day, much the same as being on treatment.

For me it is a cross to carry to maintain my driving permit, were it not for that I would not be bothering, and the machine could go in the dumpster.
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#24
I don't doubt that the study was accurately described - the problem I see is one of very little research into the topic, which, to me, is simply irresponsible reporting.  There is just so much data out there illustrating that CPAP does effectively address apnea and that apnea does cause physical changes that result in hypertension, cardiac issues, strokes - any research at all would have made the flaws in this study very clear.
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#25
I can only speak for myself.  I've used my machine a little over a month.  I do not fall asleep in the middle of the first episode while trying to binge a series.  Fall asleep on the first page of a book.  Fall asleep when someone is talking to me.  I sleep between 6-12 hours a day with it on.  (Unless I do happen to fall asleep elsewhere, which did happen a couple times in the beginning)  I have a nose that is healing from a poorly fit mask and am still getting used to nasal pillows.  The machine, in just a months time has done so much for me, and I didn't even know there was a compliance.  I simply used it every night, and everyone was  surprised I met compliance in 21 days.  (Whereas, after I met compliance, it was explained I had 90 days to do that...)
I-love-CPAP


When I was in medicine, I felt statistics, while useful for 'guidelines', was not actually useful when you looked at a patient as an individual.  There are extremes of both sides, which fall into the 'average', making it far different than it should be, and then we all call that 'average' normal.  It's not normal if you're at one of the extremes.  There are studies that say 6 hours of sleep a night may pose health issues, and 12 hours pose health issues, and states that 8 hours is the 'average', and if you're doing more or less, you're basically endangering your life.  However, that is based on a large number of people.  When a patient is treated individually, outside of this statistical average, you find each patient is quite unique and may only need 6 hours or need 10 hours, and be perfectly healthy from our understanding of biology.  It is this 'average' that a lot of medicine is focused on to group every human being into a 'normal' category, that is, in my opinion, a poor way to treat a patient.  It's okay as a guideline to start with, however I do not agree with 'averages', and focused more on my patients as individuals.  
  Grouphug3

Erm, for the article, I agree completely, all it shows is non-compliance is the same as no treatment.  Which would be similar to me prescribing a SSRI to someone, and them taking it every now and then, and then it not really helping them, in fact it could do more harm than none at all, if they're not taking it properly.  From my understanding, my CPAP was prescribed to me, I was told to use it every night when I sleep.  If I am not doing that, then I am not using it as prescribed, thus what is the point of me having it?  It also seems silly to me that I need to go to a forum (I love you all here) to get true understanding of my problems, even though I have a pulmonologist sleep specialist treating me.  I've learned more here than I did from him or the medical equipment company that I get my machine and supplies from.
Doctor-no-get-it


-Jen   Bed
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#26
(02-04-2017, 12:05 PM)Phill Wrote: On the one hand we are told by the medics that we are exposing ourselves to stroke and heart attack if we don't use their infernal machine, on the other, I have nearly taken them by the throat saying this is not ******* working, as I am lucky if I get four hours sleep a night using the damned thing.

If as I do you take the mask off when you wake after the 3.5 to 4 hours, should you be lucky enough  to fall asleep again, you are surely once again exposed to the threat of stroke etc.
There is no way once I have woken that I can fall asleep again wearing the mask.

When I explained to the medic that it was unlikely I would meet the 4 hour compliance ( a slightly different requirement here), I was told to falsify my records by lying awake while wearing the mask until the 4 hours time compliance was met.

While fully appreciating the problems other people are having, for me I have to ask the question, what is the point.

I should point out that I took myself off treatment for six weeks, I am clearly still alive, I got a better nights sleep, and rarely did I fall asleep during the day, much the same as being on treatment.

For me it is a cross to carry to maintain my driving permit, were it not for that I would not be bothering, and the machine could go in the dumpster.

Hi Phill,

Thanks for posting. 

Hang in there. 

Take care,
--- Vaughn
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#27
Would it help to read a bit with the mask on before trying to sleep? Or maybe listen to calm music?
Just brainstorming what might help. Ignore if not useful.
                                                                                                                                                                                  
Please organize your SleeyHead screenshots like this.
I'm an epidemiologist, not a medical provider. 
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#28
(02-04-2017, 02:08 AM)JamesW Wrote: My position is that if you expect the therapy to do you good, then the 6 hours minimum should be the goal.

Using it for the minimum number of hours was never my goal. My goal was always to use it for the maximum number hours, that is, every hour I'm sleeping.

Quote:Easy for me and some others,  but not for all I'm afraid.

It was never easy for me. Far from it. It was one of the most difficult things I've ever done in my life.

If I woke up after 2 hours and couldn't get back to sleep, I'd get out of bed and read until I was able to go back to bed and go to sleep. I always wore the mask whenever I was sleeping.

When we go to sleep without the mask we interfere with the adaptation process and make it all the harder on ourselves the next night.
Sleepster
Apnea Board Moderator
www.ApneaBoard.com


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#29
Over a year and a half ago I had my last sleep study test where I was averaging one apnea episode every minute without the machine. No wonder I was falling asleep all the time during the day. The second half of the sleep study they put me on the machine using nasal pillows and the study showed I had ZERO events while hooked up. Well CPAP made a believer with me and I’ve been compliant ever since.

The statement that "One possibility raised in both the study and an accompanying editorial is that the CPAP group was able to wear the masks only about 3.3 hours per night, a duration that is consistent with CPAP users in the real world"
makes no sense to me. With the exception of some (full face) mask issues that some people experience, everyone that I know that uses CPAP is very happy with its benefits and wouldn’t pull the mask off during the night Oh-jeez
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#30
I may be speaking for myself but when I get up during the night to go to the bathroom, I have no problem slipping the nasal pillows back on and resuming the Z's.
I only have a problem getting back to sleep if I get startled by noises or I have an issue that's causing me to worry and be considerably preoccupied... and thank God that it doesn't happen very much. I believe that insomnia then would be a different issue to deal with and addressed separate to the apnea problem.
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