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Poll: Have you messed with your settings within the first month of treatment?
This poll is closed.
yes
36.36%
20 36.36%
no
63.64%
35 63.64%
Total 55 vote(s) 100%
* You voted for this item. [Show Results]

Advice for new users wanting to "tweak" settings
#1
After researching quite a bit, I decided to set my S9 to auto 5-11 so I could learn what would be ideal for me, I agree that we "can" prescribe a more personalized setting than the doctor can (at least quickly).

After viewing a months worth of results and not being totally happy with the way the autoset responds to my simulated apneas, I set it to CPAP with a setting of 7.8 figuring that .8 higher than my prescribed setting couldn't hurt.

Met with Pulmonologist yesterday who is also my sleep doctor. He patiently and with no arrogance explained that a higher setting than needed CAN actually cause more problems. By fooling the brain (lack of better word) you can cause yourself to have central apneas even if you only had OSA to begin with. Through all my research I was not aware of this and immediately set my level to what he had originally prescribed, we get "some" data and feel we have the whole picture, but remember all the sensors that were hooked up to you for the titration and the video, oxygen sensor, etc. Now I am set back in my goal for the MOST effective therapy because the doc doesn't want to see what I've messed with, he wants two months of data at my prescribed setting.

Moral of story. A little bit of knowledge can be a very dangerous thing. Most of us have lived years with this with no treatment, follow your docs advice if you believe he is knowledgeable and competent (if you don't, change docs). There are things that we do not know and might not stumble upon unless we delve into the real medical journals.
Sleep-well
-Mike
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#2
The problem with docs saying that is this: Most docs will jump up a pressure setting two or more points and not give warnings at all. You raised it by .8 and got a lecture. See the difference?

So many times we hear this from users. Where the doc says "don't change it or you risk death!". Then the doc jumps up several points and doesn't say "bring me your data in two weeks and let's see how it is doing".

And changing your pressure after only a month is not advisable. If you feel good and the AHI is below 5, don't muck with it.
PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

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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#3
What PaulaO2 said!
Why is it "okay" for the doc to jump you up several points? But yet if you raise your pressure just a tiny bit, it may result in death, (so to speak.)
I've read a lot of posts here where people have been raised several points and have had very difficult times, whereas, if the docs had raised pressures up more gradually, instead of all at once, it wouldn't have been so difficult for them. Just a few thoughts.
trish6hundred
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#4
(09-22-2012, 10:43 AM)jackazz76 Wrote: After viewing a months worth of results and not being totally happy with the way the autoset responds to my simulated apneas, I set it to CPAP with a setting of 7.8 figuring that .8 higher than my prescribed setting couldn't hurt.

What was it that made you unhappy?

Quote:He patiently and with no arrogance explained that a higher setting than needed CAN actually cause more problems. By fooling the brain (lack of better word) you can cause yourself to have central apneas even if you only had OSA to begin with. Through all my research I was not aware of this

It's called CPAP-induced central apnea. You can easily tell by looking at the data whether or not it's happening to you. I doubt increasing the pressure by 0.8 cm would cause much of an effect. You could probably get almost the same increase by changing from a full face mask to a small nasal pillow.

Quote:Now I am set back in my goal for the MOST effective therapy because the doc doesn't want to see what I've messed with, he wants two months of data at my prescribed setting.

Moral of story. A little bit of knowledge can be a very dangerous thing.

I agree. I wouldn't change my pressure during the first two months of therapy. If I thought it needed changing I'd contact my doctor.

Hopefully you'll get a good baseline of data at that pressure and you can go from there.
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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#5
(09-22-2012, 10:43 AM)jackazz76 Wrote: After viewing a months worth of results and not being totally happy with the way the autoset responds to my simulated apneas,
Whats simulated apneas?

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#6
I believe it was well over a year before I adjusted my pressure on my first machine. But back then there was no data or anything as machines were just dumb blowers. Even now I do not just go monkey around with my machine because I had a bad night or more. I would consider making further changes if my machine were showing that it was constantly hitting the ceiling for several weeks. For example right after I had surgery my AHI was terrible! But after a few days of learning to sleep with 3-4 pounds of plaster, cotton batting an wrappings on my hand and a whole new type of pain, my AHI dropped right back down. The point is that things happen in life, sometimes it is obvioud and sometimes not, but you need to leave things be and give things a chance to work out. Changing your settings in the first couple months is not giving things a chance to work out. JMHO
As always, YMMV! You do not have to agree or disagree, I am not a professional so my mental meanderings are simply recollections of things from my own life.

PRS1 - Auto - A-Flex x2 - 12.50 - 20 - Humid x2 - Swift FX
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#7
Heck, until 2009 I didn't know you could change your own pressure; it wasn't until I stumbled onto this forum that I learned what I could do. Thanks
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 OPINIONS ONLY AND NOT NECESSARILY STATEMENTS OF FACT.
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#8
Jack,

I'll leave the doctor bashing to others.

Your profile says you have an S9 Escape Auto. This machine doesn't collect efficacy data, only usage (compliance) data, so what are you basing your decisions on?

You also state that you had the machine set to auto 5-11 and then say you changed to CPAP 7 to 7.8. Switching your machine from Auto to CPAP is a huge change compared to just adjusting the CPAP up 0.8 cmH2O. 7 cmH2O is a fairly low treatment pressure to begin with (a good thing) so going up 7.8 shouldn't worry anyone.

As far as CPAP correlating to CSA events, I think you'll find that over and over in threads on this forum. I've only seen one "study," (fairly inconclusive) but it is pretty much accepted here that CPAP, particularly at pressures >15 cmH2O, can correlate to CSA events, but likely not at a level that should be of much concern. To put it another way, if the xPAP therapy drops your OSA events by 70 an hour can you put up with the 2 CSA events per hour it might cause?

I will acknowledge that your doctor may be being overly cautious to make a point. In America, more is always better. If a 0.8 change helps, why not go up another 5! I know this is absurd but, again, it's just making a point.

Let us know some of your numbers and such. There's a lot of folks here that can share their experience and maybe give you some good advice!
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#9
One thing I've never seen discussed in depth.

Are pressure induced central apneas actually harmful?

Does your O2 level drop significantly? CO2 go up? Does your heart rate go up?

Do you simply stop breathing because your CO2/O2 levels are good, and then start breathing again when they drift into the danger zone?

Do some people have long pressure induced centrals like 30 seconds or so, or are they simply 10-15 second events?
Get the free SleepyHead software here.
Useful links.
Click here for information on the main alternative to CPAP.
If it's midnight and a DME tells you it's dark outside, go and check it yourself.
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#10
The problem with the assumption that CPAP pressure induces true centrals is that data-recording CPAP and APAP machines have no way to accurately determine a true central event. That's why some record it as a "open airway" event.

True central sleep apnea is a neurological event and can't really be effectively determined without being hooked up in a sleep lab.

Until someone, somewhere does a comprehensive study proving that higher CPAP pressures actually induce true central events, I remain sceptical that the relatively small number of centrals that are reported by CPAP machines are something to be overly concerned about. Now, if the machine reports a huge number of centrals, yes, that might need to be looked at.

Again, just my opinion, of course. Smile

SuperSleeper
Apnea Board Administrator
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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