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Daytime breathing difficulties
#21
RE: Daytime breathing difficulties
Great advice here but I just hope she is able to understand it all.

I am curious if you are able to Mastiff Mom?

I ask this for I am a fairly intelligent person and yet in the beginning a thread like this would completely throw me. I think we can sometimes forget that what seems to easy to understand to someone doing this even a couple of months, will look like a new language and very hard to make sense of. Especially when in almost ever few sentences, there is a word or term that pertains to Sleep Apnea somehow but in order to understand it, you have to go look up that term first to see what it means.

I didn't care if I looked stupid asking people to explain something further and nor should you if you find any difficulty understanding anything,
For me it was further hampered by an incredibly busy lifestyle with little time to myself, therefore little time to read up on anything to understand what was being said, so it was really a lot of trial and error, not really knowing what i was doing.
And perhaps this areas is not just my forte, but if you don't understand something, don't hesitate to ask for I found if i missed one thing being explained, than almost everything after it also got lost........and i continuously had to go back over pages and posts and re-read what was being said to me, especially if and when 2 people might have opposite viewpoints...... Smile

I must have missed the big about a titration study but i gather he has not had one yet?
I assume he is booked for one?
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#22
RE: Daytime breathing difficulties
Yes and no LOL. This is completely new to us so I have to go look up terms I'm unfamiliar with ... which is pretty much every other word LOL. The data from the SDcard is totally and completely baffling to us. We have yet to understand the median, 95th percentile, etc. but that's for another day. Right now we are just trying to figure out how to get the machine to work without over pressurizing his lungs.

No titration study done or scheduled. The only test was the inital home study to determine if he had sleep apnea. The Doctor and RT involved in this fiasco are true idiots. We have learned more about the machine from this board than them. When he saw the Doctor because of his shortness of breath and lung pain, the Doctor literally said he didn't know how the machine worked and asked what we wanted him to do. And yes, he is a pulmonologist with a subspecialty in sleep medicine that our GP referred us to. Because I had reports from ResScan he set the max to the median pressure. Thanks to the info here I was able to verify that the SDcard did set the max pressure to 12 like we were told and he has a new mask to try (no thanks to the RT but the DME folks picked one and mailed for him to try). He was basically handed a mask, shown how to put it on, shown how the hook the machines together, where to put the water and the hoses and sent out the door. The machine was set to min 5 and max 20. We still have no explanation for why the pressures kept getting so high when the median pressure was 11.9. When he did the mask fit test the other night we were startled because the pressure went way over what the machine was not supposed to be limited to. Again, had someone explained to him what would happen during the mask fit test our fear could have been avoided. Anyway, the way the pressure kept climbing is identicial to what was happening that would wake him at night and he would have to jerk the mask off and turn the machine off in order to get it to reset.

Now that his lungs are feeling normal, he's ready to try the machine again. We are trying our best to get the machine to work, at least part way, so that he can get some relief while we try to find a new doctor. Until then, Google is my friend LOL.

I do want to thank all the folks here for their comments. Truly, we would be lost if I hadn't found this board.

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#23
RE: Daytime breathing difficulties
I do not remember if this has been covered before but you said above that it was still causing some confusion so I will try to explain.

Max
That is the maximum value that the subject measurement ever got to even once during the session.
Median
Median is a statistical term. If one took 99 readings (for instance of pressure) and listed them all in a column in order of value and then counted down to the 50th reading, that is the median value. For instance for the five following values:

1
1
1
4
5

The median value is 1 ( the middle value). The mean of these 5 values is the sum of the values divided by the number of values or in this case it would be 12 divided by 5 or 2.4. The mean and median can be have the same value or as above they can have different values. People sometimes use mean and median interchangeably but they are different.

The 95% value is the value which 95% of the values are below. Which also means that 5% of the values are between the 95% value and the max value.

Best Regards,

PaytonA

Admin Note:
PaytonA passed away in September 2017
Click HERE to read his Memorial Thread

~ Rest in Peace ~
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#24
RE: Daytime breathing difficulties
So, really, in terms of CPAP use, the "median" pressure is not all that useful other than for general trend gathering.

The pressure number to look for in the data is the 95% pressure.

But at this point, the thing to do is get used to using the darn thing. To heck with what it all means and all that, just get used to using it. Even if it means lowering the maximum pressure a few notches. Getting the maximum pressure right don't mean much if he can't tolerate it and won't wear it.

PaulaO

Take a deep breath and count to zen.




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#25
RE: Daytime breathing difficulties
(06-25-2014, 05:55 PM)PaulaO2 Wrote: So, really, in terms of CPAP use, the "median" pressure is not all that useful other than for general trend gathering.

Let's say you had a pressure range of 6-14, with a median of 11. That's an indication that you might be able to lower your AHI by changing the range to 8-14.

In other words, making the median the middle of your range might be a good idea. Worth a try, anyway.

Sleepster

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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#26
RE: Daytime breathing difficulties
(06-25-2014, 06:35 PM)Sleepster Wrote: Let's say you had a pressure range of 6-14, with a median of 11. That's an indication that you might be able to lower your AHI by changing the range to 8-14.

In other words, making the median the middle of your range might be a good idea. Worth a try, anyway.
Median 11 means pressure was at or below 11 for 50% of the night
does not mean pressure was at 11 for 50% of the night

For that reason, you need the software to see how much time spent at 11, could be most of the time or not much time at all

I set the minimum pressure on my S9 close to the 95th percentile, feel comfortable and the machine in good position to deal with any events it encounter without any pressure induced central events
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#27
RE: Daytime breathing difficulties
(06-25-2014, 06:35 PM)Sleepster Wrote:
(06-25-2014, 05:55 PM)PaulaO2 Wrote: So, really, in terms of CPAP use, the "median" pressure is not all that useful other than for general trend gathering.

Let's say you had a pressure range of 6-14, with a median of 11. That's an indication that you might be able to lower your AHI by changing the range to 8-14.

In other words, making the median the middle of your range might be a good idea. Worth a try, anyway.

And it might indicate you can lower the minimum, too. My minimum is 14 but the median is around 15.x. I could probably drop the min. some and be fine. Which is why I think it is good for trend information. Same with the 95%.

But let's not confuse the poor OP any more than she already is!BigwinkEat-popcorn

PaulaO

Take a deep breath and count to zen.




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#28
RE: Daytime breathing difficulties
(06-25-2014, 08:40 AM)MastiffMom Wrote: I do want to thank all the folks here for their comments. Truly, we would be lost if I hadn't found this board.

We do it because we've all gone through what you're going through now. Did you manage to get the pressure set at a maximum of 12?

When you check the data the two most important things to look at are the leak rate and the AHI.

Believe it or not, eventually you'll get to the place where all you need to worry about is sleeping and using the machine will be just a regular part of the bed time routine.

At first I was swallowing air and it was making my cheeks puff up, now I can't even feel it.
Sleepster

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
RE: Daytime breathing difficulties
(06-25-2014, 09:41 PM)Sleepster Wrote: [quote='MastiffMom' pid='73511' dateline='1403703654']

Did you manage to get the pressure set at a maximum of 12?

Yes. He tried the machine last night and nothing went goofy. It was still a rough night with the mask off a couple of times but he thinks he has it too tight but waking enough to fiddle with it at 2 a.m. when the alarm goes off at 4:30 a.m. is a bit much. He will adjust the mask tonight and see how it goes. I'm praying that now it is just the normal adjustment crap most people go through and we can get it fine tuned. We were both very nervous last night after what had happened before.

(06-25-2014, 05:55 PM)PaulaO2 Wrote: But at this point, the thing to do is get used to using the darn thing. To heck with what it all means and all that, just get used to using it. Even if it means lowering the maximum pressure a few notches. Getting the maximum pressure right don't mean much if he can't tolerate it and won't wear it.

Thumbs-up-2

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#30
RE: Daytime breathing difficulties
(06-26-2014, 06:00 AM)MastiffMom Wrote: Yes. He tried the machine last night and nothing went goofy.

Fantastic. Congratulations.

Quote:It was still a rough night with the mask off a couple of times but he thinks he has it too tight but waking enough to fiddle with it at 2 a.m. when the alarm goes off at 4:30 a.m. is a bit much. He will adjust the mask tonight and see how it goes. I'm praying that now it is just the normal adjustment crap most people go through and we can get it fine tuned. We were both very nervous last night after what had happened before.

You're right. It is a normal part of the adaptation process. It's amazing how the human body can adapt so well to these things. It just takes time.

Normally we have to try different masks until we find one that fits us well. Do you know why he was given a full face mask instead of a nasal mask? Nasal masks are easier to fit and easier to adjust. They also make a hybrid mask that has one part for the nose and one part for the mouth.

The DME and your insurance company will have policies in place that allow new patients to try several different masks.
Sleepster

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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