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General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Rach.Eliz
 
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Re: Need response--my doctor won't help

Postby Rach.Eliz on Wed Jan 11, 2017 3:32 pm

Thanks. In answer to your question, I do use the machine when I nap.

I do use the A-flex setting on my machine. My Remstar Auto allows you to adjust the A-flex from levels 1-3. I've tried all of them, and it doesn't seem to make a difference to the symptoms.

of_the_west
 
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Re: Need response--my doctor won't help

Postby of_the_west on Wed Jan 11, 2017 5:52 pm

Question: Is there a reason why you're even using auto titration? In the charts you posted, for the vast majority of the night your pressure it sitting right at or near 9cm and it doesn't stray far from that except for times when it seems like the machine is somewhat randomly adjusting the pressure up and back down (I'm looking at all of the small little green spikes in the Pressure graph). I don't have experience with the RemStar machine, but have you tried setting your pressure to a constant 9cm and see if that makes things feel better for you? You might also try turning off the exhalation pressure relief.

Rach.Eliz
 
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Re: Need response--my doctor won't help

Postby Rach.Eliz on Wed Jan 11, 2017 9:14 pm

I'm not sure exactly why my doctor prescribed auto but there could be a couple of reasons. When I got my sleep study, I had a LOT of trouble sleeping and only got a couple of hours. However, my AHI was very high (51) so they went ahead and diagnosed me without doing a follow-up study to actually determine a set pressure. I think he may have prescribed auto because my OSA was so severe; he said that auto technology is the best at eliminating events, and he felt I needed the best based on how bad my case was.

Originally they had my minimum pressure at 5, but I couldn't tolerate that so they bumped it up to 8. It got bumped up to 9 because of the instances of me still feeling breathless as I was going to sleep--the thinking was maybe my minimum just wasn't quite catching my events as I was dozing off. I thought it had worked at first, but eventually I did start having the breathless feeling sometimes at night.

I might try to figure out how to turn off the A-Flex (the decrease in exhalation) but I would probably have to download a manual to do that; there isn't an option to turn it off in the regular menu, only to adjust how strong or weak it is.

I can see how that might help with feeling like it wasn't synced up to my breathing. But I"m not sure why you suggest setting the machine at a constant 9 rather than having it auto-adjust. Can you explain a little more how you think that might help my symptoms? Thanks!

michaelanthonyp
 
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Re: Need response--my doctor won't help

Postby michaelanthonyp on Wed Jan 11, 2017 9:38 pm

RE "One thing I had considered: has anyone looked into Resmed's CPAP machine that supposedly has an algorithm specifically for female breathing patterns?" Oh I hope you can get to the bottom of this get some good sleep without events!

I have a Resmed Auto BIPAP (Im a male, though). This machine is *supposed* to adjust to your breathing pattern. I have had this machine for over 2 years and still haven't gotten used to using it every night, all night. I do get exactly the same symptoms as you. Please ignore any medical professional who even hints that 'its all in your head'. That is baloney.

My events sound like yours: Sometimes I can fall asleep, and wake up at some point gasping for air, sometimes I sit bolt upright. its a fairly scary thing, sometimes my heart is beating very hard and very fast as well, and I can't get back to sleep. When I get these events, I wake up more exhausted then before I went to sleep. My doctor's basically don't want to hear about it either. its extremely frustrating.

The problem Ive had with this machine is that it doesn't track the changes in breathing patterns very well. Just as I'm falling asleep, I breathe a certain rate and depth. The machine seems to "tune into" this pattern, and when I wake up with one of these events, I am either breathing out of sync with the machine, and have to open my mouth (which basically means the machine is making things worse), or in my specific case, the machine goes into some kind of fail mode and the output is too low to help me.

I think we both need to fight a bit with our doctors to get them to listen to these issues.

If you can do it without too much out of pocket cost, try an auto bi-pap, maybe it will work for you,

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OkyDoky
 
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Re: Need response--my doctor won't help

Postby OkyDoky on Wed Jan 11, 2017 9:40 pm

Here is a link to show you how to get into the clinical setup to change the flex settings. http://www.apneaboard.com/pr-system-one ... structions
You can also request by email your Clinical manual here. Scroll down to section three and follow the email instructions. http://www.apneaboard.com/adjust-cpap-p ... tup-manual
ResMed Aircurve 10 VAUTO EPAP 11 IPAP 15 / P10 pillows mask / Sleepyhead Software / Back up & travel machine Respironics 760

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Krelvin
 
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Re: Need response--my doctor won't help

Postby Krelvin on Wed Jan 11, 2017 9:50 pm

Rach.Eliz wrote:However, my AHI was very high (51) so they went ahead and diagnosed me without doing a follow-up study to actually determine a set pressure. I think he may have prescribed auto because my OSA was so severe; he said that auto technology is the best at eliminating events, and he felt I needed the best based on how bad my case was.!

51 is much lower than a lot of people on this forum.

How much pressure it takes to clear your airway has little to with the number of events you have. Too bad they didn't do a split sleep study to find at least a good starting point.

Some people do better with a straight pressure as well.

In my case I was over 90 AHI in the first half and in the second half they quickly went from cpap to bilevel in the first 30 mins. I slept nearly 3 hours solid in the second half it was working so well.

Even then it took almost 3 months to get my levels, sleep position and mask setup where it was most effective and I could sleep well on a regular basis.
Current Settings PS 4.0 over 10.6-18.0 (cmH2O) - Resmed S9 VPAP Auto w/h5i Humidifier - Quattro Air FFM
TNET Sleep Resource Pages - CPAP Machine Database
Put your equip in your Signature - SleepyHead v1.0.0-beta-1
Kevin... alias Krelvin

michaelanthonyp
 
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Re: Need response--my doctor won't help

Postby michaelanthonyp on Thu Jan 12, 2017 5:31 am

Krelvin wrote:
Rach.Eliz wrote:However, my AHI was very high (51) so they went ahead and diagnosed me without doing a follow-up study to actually determine a set pressure. I think he may have prescribed auto because my OSA was so severe; he said that auto technology is the best at eliminating events, and he felt I needed the best based on how bad my case was.!

51 is much lower than a lot of people on this forum.

How much pressure it takes to clear your airway has little to with the number of events you have. Too bad they didn't do a split sleep study to find at least a good starting point.

Some people do better with a straight pressure as well.

In my case I was over 90 AHI in the first half and in the second half they quickly went from cpap to bilevel in the first 30 mins. I slept nearly 3 hours solid in the second half it was working so well.

Even then it took almost 3 months to get my levels, sleep position and mask setup where it was most effective and I could sleep well on a regular basis.
\

Re " I slept nearly 3 hours solid in the second half it was working so well." oh what I wouldn't give for 3 hours of solid sleep! !!!!

Rach.Eliz
 
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Re: Need response--my doctor won't help

Postby Rach.Eliz on Thu Jan 12, 2017 6:31 am

Interesting. I've definitely learned of people with higher AHIs than mine since then. However, at the time of diagnosis, my doctor told me it was very severe.

I do wish they had done a split study, but on the other hand, I had SO much trouble getting any sleep at all the first time. I kind of doubt I would have actually gone to sleep during the second study, with the added discomfort of trying to get used to the mask. It took me a month to get used to it in the comfort of my own home.

Julie
 
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Re: Need response--my doctor won't help

Postby Julie on Thu Jan 12, 2017 6:37 am

The number of events you have (and your score is actually in the severe, but by no means 'very' severe category) has nothing to do with whether or not your airway opens enough to allow adequate air in... something determined now by C or Apap. Everyone's airway's different but so are their severity scores and there's no correlation (or possibly only incidental ones) between the two.

Straight Cpap was suggested because your Sleepyhead stats showed that your pressure stayed so evenly at about 9 cm every night that Apap was not hugely necessary, and there are people that find themselves being woken (if not fully consciously) by the changes in Apap going up and down. It's something you might want to try out.

of_the_west
 
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Re: Need response--my doctor won't help

Postby of_the_west on Thu Jan 12, 2017 8:54 am

Putting it another way: Auto titration works by the machine monitoring your breathing rate, volume, apneas, hypopneas, and even 'vibration' (to detect snoring and other things like that) and attempts to anticipate and/or correct for them by increasing and decreasing the pressure to help you breathe. Every manufacturer has a different software technique for doing this. The sleep data you posted, however, seems to indicate that you're doing pretty darn well right around 9cm -- so much so that the machine rarely adjusts the pressure up from that.

However, the machine seems to 'flutter' occasionally (I'm no doctor, but the SleepyHead data makes it look like it) by adjusting the pressure slightly up from 9cm and back down again, over and over during various periods of your night. It could be that during your sleep/wake cycle you breathe somewhat erratically -- we all do -- and as the machine is attempting to anticipate your breathing rate and other idiosyncrasies, it attempt to adjust the pressure to accommodate those small changes. And in turn you may have the feeling like you're 'fighting' the machine, breathing out of sync with it, and in fact that may even exacerbate the machine's response. It may also be that you sleep somewhat restlessly (i.e. not still) and this can affect your breathing, too, and the machine's response to it.

By experimenting with a constant pressure, it may alleviate the feeling for you that you're fighting the machine, out of sync with it, etc. and it may also alleviate the small bit of overcompensation the machine might be making that can cause your breathing to become somewhat more erratic. The rationale is the same for the exhalation pressure relief -- sometimes this can cause your breathing to become disturbed which might wake you and/or cause the machine to compensate in a way that causes your subjective feeling of distress.

Point being: try removing those variables, particularly since you *seem* to be doing well right around a constant 9cm. The end result is that the machine won't try to anticipate small changes and you may have a better subjective feeling.

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