What's with this newbie data?

[HalfAsleep]

[drgrimes]

I apologize for jumping into this discussion late in the game.  I've been absent from the forum for a good while, doing other fun things.  HalfAsleep, i had total hell in the beginning, almost giving up completely.  My sleep doctor was of little or no help.  I was plagued with mouth breathing, horrible leaks and poor AhI.  The two guys who ran the DME where i got my equip were the best help, because they were both cpap users.

Please take all of my advice with several grains of salt.  With the help of this forum in the beginning and a huge amount of experimentation, i finally am comfortable sleeping and generally have an AHI of less than one.  OK, most of us are plagued with leaks, especially mouth breathers and FFM users.  My DME guys suggested rolling a small hand towel or T shirt and placing under the chin....way better than a chin strap, The mouth coming open screws up everything, FFM and nasal pillows.

I could never get leaks under control with the FFM.  There is so much area to leak with FFM, so my first suggestion is to TRY a nasal pillow system.  I know some people have no choice but if there is any way you can cross over i would suggest trying.  With nasal pillows there is only a tiny amount of area to keep sealed.  I was ready to quit when i made the switch out of desperation.  Hopefully your sleep doctor and DME can help with this.

Some people have difficulty in nose breathing.  I have allergies and some nights stuffed up nose.  I use one of the cortisone base nose sprays and even then sometimes don't breathe well when i first start cpap.  I've noticed that if i just relax, after a while, i feel my nasal passages open up with the pressure of the machine.

One other area of experimentation that has helped me greatly is changing the pressure on my Resmed Autoset.  Some of you will spank me for taking matters into my own hands, but it was this or quit.  As i said, my sleep doctor was little/no help.  I had to beg to switch from the first "brick" machine to the Autoset.  And i had to beg him to give an RX for variable pressure.  Well he put it to the max. I felt suffocated by the excessive pressure.  This also caused massive leaks.

I toned down the pressure and suddenly I was at peace with my machine.  I would say that if one can ever successfully use the nasal pillow system, life on cpap becomes much easier.  I know this doesn't work for everyone......just my journey through hell....and out the other side.

[Apnea Infant]

I'm not sure what you see, but this image looks like a colorful postage stamp.  You need to use the "huge thumbnail" or original image link.  In spite of it's small size, I can see the flow limits from a mile away...enjoy your new bilevel you'll be needing soon.

So what is acceptable flow limit?

[Sleeprider]

I'm not sure what you see, but this image looks like a colorful postage stamp.  You need to use the "huge thumbnail" or original image link.  In spite of it's small size, I can see the flow limits from a mile away...enjoy your new bilevel you'll be needing soon.

So what is acceptable flow limit?

I don't know if there is a correct answer for this as many of us have a median of 0.00 and 95% less than 0.1.  I think that is actually pretty common.  When the graph has sustained flow limits above 0.3 or 0.5 with frequent excursions to 1.0 as we see here, I'd call that a problem, and it shows in the events.   This is the graph of a person with fairly severe upper airway resistance and it causes notable and sustained increased inspiratory effort and often complete occlusion of the airway.   This graph is notable for the very few segments of normal FL like around 5:20 AM.  

I don't think HalfAsleep will ever get satisfactory and comfortable results without more pressure support than a CPAP can provide.   Her tolerance to bilevel, specifically if she can use the pressure support necessary to normalize inspiratory flow resistance without centrals is going to be something determined in titration or use.   We already know she does not tolerate high CPAP pressure as she has been making a heroic effort at CPAP for several months without ever achieving good therapy results.  Her obstructive apnea generally arises out of flow limitation.  I think the answer is a lower EPAP pressure with a pretty substantial pressure support.  If that resolves flow limits but leads to centrals, then the solution may transition to ASV.  I think it's time for her medical team to acknowledge that she needs a different solution, and at least look at a bilevel titration.  

Blaming her results on her, and leaks doesn't cut it, and I would have jumped off this ship, and found more competent and interested help.  I can't imagine that having these kind of results, and the obvious discomfort the therapy imposes would be tolerable for very long.  She was diagnosed with a relatively low AHI, mainly hypopnea. Her therapy looks worse than what was represented in her diagnostic test.  She was given an auto CPAP with a wide range of pressures, which is basically saying, "go self-titrate".  Well, it hasn't worked.  Time to move to the next step.

[drgrimes]

Sleep Walker, i certainly agree with your advice regarding pressure.  I'm sure we all wish our sleep doctors were more helpful, but i think my doctor just got bothered by my persistence and gave me a very wide range of pressure hoping my machine would sort it out.  As you said "self titrate".  My sleep test was far from scientific.  They tried a few different things, but i believe when they can't figure out anything else, they just throw a FFM and high pressure at you.

I have analyzed my own data constantly since the beginning, about five years ago.  One thing for sure, big leaks seem to be accompanied with raising the pressure, which does not help the problem in many cases.  For sure not mine.  Maybe I was wrong, but when i lowered my upper limit from 15, down to 12, then finally down to ten, all of my results improved.  AND have stayed good ever since.  I can look at the pressure graph undulate nicely, on occasion, maxing out, but for the most part my 95% pressure is around 8.

[HalfAsleep]

Thanks, DrGrimes. My leaks are now quite minimal. When I started, I had nasal pillows and my leak percentage was 50+. That's when I shifted to FFM (just 2 weeks ago); my leaks are well under control. I also use a tube for my chin: it sounds like you've had great experience with this, too.

Better than any of those facts, however, I have become much more confident at turning the hardware (and SleepyHead) into a tool for me. It might not end up being the right tool, but the feeling of mastery is important to me.

[HalfAsleep]

SleepRider, I see that I have the flow limit chart from hell, but the interesting thing is that the untreated events are almost all when there's no flow limit. So they must be centrals and not OA's?

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Since I'm closing in on my prescribed upper pressure (15) with low leaks and it's very obviously making things worse, I'm in a solid position to nudge the Sleep Center into Plan Bipap. I have DATA! And in a week or so, I should have several days of full prescription, low leak DATA.

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I so much appreciate your encouragement!

[Apnea Infant]

Sleep Walker, i certainly agree with your advice regarding pressure.  I'm sure we all wish our sleep doctors were more helpful, but i think my doctor just got bothered by my persistence and gave me a very wide range of pressure hoping my machine would sort it out.  As you said "self titrate".  My sleep test was far from scientific.  They tried a few different things, but i believe when they can't figure out anything else, they just throw a FFM and high pressure at you.

I have analyzed my own data constantly since the beginning, about five years ago.  One thing for sure, big leaks seem to be accompanied with raising the pressure, which does not help the problem in many cases.  For sure not mine.  Maybe I was wrong, but when i lowered my upper limit from 15, down to 12, then finally down to ten, all of my results improved.  AND have stayed good ever since.  I can look at the pressure graph undulate nicely, on occasion, maxing out, but for the most part my 95% pressure is around 8.

I agree, DrGrimes. 

You saying.....they just throw a FFM and high pressure at you.......was my own experience too. And like with you, the over high pressure was causing massive leaks and all but destroyed any sleep I hoped to improve. Like you, I started reducing from 16.8 to 14 and by degrees down to 11 now. My intent is still to lower it gradually and see if I can tolerate 10-all in an effort to keep leaks at bay and any potential aerophagia.

[HalfAsleep]

Great minds think alike! Yeppers, I'm one of the ones that lowered pressure to see if treatment would work better. I wanted to arrive at a healthy balance between pressure and leakage while maximizing treatment efficacy. I'm still in that experiment. It may not work out for me in the end, but just experimenting taught me a lot.

[ajack]

with your chart I would have min 11 and max 15 and these may be needed to be changed later. I don't think you are in treatment range where you are now.

After 8 pages, I think you may need to look at the basic stuff again. There seems 2 main reasons, either the person doesn't want to raise the pressure or is trying to fix mouth leaks, or a combination of both.
Have you tried a foam cervical collar yet, it may open your airway?
If you still have leaks, and you have read everything here and youtube videos on mask fit, it's time to change masks. If you have mouth leaks, get a full face mask.
open the max pressure to 20
You have sleepyhead so you can keep the minimum pressure to 1 cm below the median number