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96 days in, the Hen will finally see Dr. Questions?
(03-28-2015, 05:01 PM)TheManseHen Wrote: While I am improved greatly over what I was, is it wrong I want to get the BEST BEST levels and more the point CONSISTENCY, that I can?

In answer to this specific question.
it is my personal opinion that some people try too hard to achieve low AHI while making their CPAP experience less comfortable.

We all seem to cheer when a person gets an AHI below 1.0. If that comes at the expense of high pressures, leaks , and discomfort, it may not be worth it.

Most of us started with high AHI -- like an average of one event per minute. That is very disruptive of our sleep quality. With therapy, most can achieve less than 5 per hour. A little tweaking can improve that for most people. But, over-tweaking would be like adjusting the fuel to air mixture on ones car everyday because one thinks it might improve mileage or performance.

I would offer these works of caution when dealing with your doc: Some are incensed when a patient tweaks their PAP. Some to the point of refusing to continue to see a patient. So, I would tread lightly on that subject -- the doc will see changes to the Rx on the data card; if he/she looks at it.

I have not been following changes you might have made -- so, perhaps you have made none...

Your doc was at least enlightened enough to have you on an autoset -- so perhaps your doc is not in the control freak class of docs.
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(03-29-2015, 11:56 AM)justMongo Wrote:
(03-28-2015, 05:01 PM)TheManseHen Wrote: While I am improved greatly over what I was, is it wrong I want to get the BEST BEST levels and more the point CONSISTENCY, that I can?

In answer to this specific question.
it is my personal opinion that some people try too hard to achieve low AHI while making their CPAP experience less comfortable.

We all seem to cheer when a person gets an AHI below 1.0. If that comes at the expense of high pressures, leaks , and discomfort, it may not be worth it.

There was a term that Col. Jeff Cooper introduced to me: PII - that is a preoccupation with inconsequential increments.

Sometimes good enough is good enough. Consider the 80/20 rule - If you accomplish 80% result with the first 20% of effort, and the remaining 20% result would take 80% of the effort, many times it is just not worth it. Another way to look at it - sometimes you can get five things 80% done or one thing 100% done. If 80% is good enough, then there's a lot more time to enjoy what you got or do more stuff....

But ....

Everyone must find their own salvation - Jimmy the H.

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(03-29-2015, 01:55 PM)OMyMyOHellYes Wrote: There was a term that Col. Jeff Cooper introduced to me: PII - that is a preoccupation with inconsequential increments.

I did not know Jeff Cooper -- but, I am a fan.
I'll take the Weaver stance any day.
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(03-29-2015, 03:51 PM)justMongo Wrote: I'll take the Weaver stance any day.

You know, I've never seen any fighter square off in isosceles.

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(03-29-2015, 04:18 PM)OMyMyOHellYes Wrote:
(03-29-2015, 03:51 PM)justMongo Wrote: I'll take the Weaver stance any day.

You know, I've never seen any fighter square off in isosceles.


Modified Weaver!!!
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(03-29-2015, 09:02 AM)Sleeprider Wrote: I tried going back over some of your past posts and graphs on the site. You have overcome most of the obstacles to therapy in terms of comfort and have adapted well to the therapy. You appear to benefit in both quantifiable and qualitative ways from CPAP therapy. In spite of this, you have a relatively high AHI with an approximately equal mix of CA and OA events, and a small contribution of H. You were averaging up to 20 minutes in apnea per night. You never have posted really useful graphs. We don't know what your use of EPR is. The pressure flow graphs have been so compressed it is impossible to discern any correlation of events to pressure, snores, flow limitations etc. I have mentioned this in every thread in which you posted data, so I don't expect you to change now.

Your therapy results are "almost" acceptable, but do suggest that further improvements might be possible. The presence of a significant residual OA indicates a need for more pressure. The CA is not treatable with pressure, and we don't really know the cause of CA, however it might be related to sleep disruption, moving around while asleep or awake and other causes. Without knowing how your react to EPR, it's hard to extrapolate whether you'd benefit from bilevel therapy. That is a good question because for any number of reasons, you may need higher pressure differential IPAP/EPAP to support your respiratory function against OA, and encourage improved ventilation and prevent CA. Your Trigeminal Neuralgia may be a complication that further supports the benefits of bilevel.

Anyway, this appointment is an opportunity to discuss YOUR concerns. I think the residual apnea and total time in apnea are concerns as well as any sense you have that while you feel better, whether you also feel there is room for improvement. Doctors rarely engage patients in technical discussions of pressure and AHI, but yours might be an exception. Getting suggestions on any pressure range modifications, including EPR that might improve that and whether bilevel therapy could help improve AHI and time in apnea are valid questions. Otherwise, I'm pretty sure the conversation will be pretty much "how do you feel".

Very helpful. Thank you. I am at an EPR of 3. And I'm happy to try to put up pics of more helpful info if you remind me what the perameters are again. In the past weeks I've had a laptop die, a husband away (and thus care of step son with Down Syndrome and a dog who needs 3 walks a day) and a change to a MAC computer which has really been a steep learning curve for me. It is different in sleepyhead than it was with the Laptop. Soooo, I'm still trying to figure out how to change things in the display.

I do feel much improved over not being on c-pap. And in the last few days I've seen a sudden change to having longer sleep periods at a time. The only thing that has changed is that I've been eating snickers or reeses right before bedtime. I know, not a "healthy" move so it's not sustainable. But now that I've had these amazing longer sleeps, I'm afraid to give them up. I am hopeful that the candy is just a coincidence. If not, I'm hoping that switching to say a rice cake with almond butter on it, would have the same effect (-:

Thanks for bearing with me.

The Manse Hen
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(03-28-2015, 05:52 PM)Sleeprider Wrote: For insurance purposes, you want to establish both compliance and benefit from the therapy. The concern is a somewhat high residual AHI. Please don't call your periodic breathing Cheyne Stokes, or you will instantly lose credibility. That is a labeling problem by Sleepyhead and really should be changed in the next version since CS is a diagnosis of a specific type of periodic breathing.

I don't know what you can say. You have taken control of your therapy and optimized to the greatest extent possible with what you have. What do you think is missing? What would you like to improve?

Excellent Advice re: saying Cheyne-Stokes. I note that it is also so labeled in Rescan. (that said I no longer use Rescan as it has no Mac version)

I have established compliance. Does benefit only include AHI from the docs or insurance CO's perspective? I have had my Nocturia and polyuria almost entirely disappear, if not entirely. It's been gone at least the last couple or three weeks, and before that it was decreasing steadily. I've had my first 4 hours of continuous sleep, and then my first 5 hours, and then my first 6 hours, and in the last couple weeks, my first 7 hours, of continuous sleep in over a decade. I'm thinking that is an improvement. And it shows on both types of software. Grant it, the insurance co's only get AHI I think.

I also as a result of the improvements, have gone from not being able to sleep until nearly dawn ( I think one just avoids it when night is a misery) to going to sleep at around 1-2 a.m. To say my life is drastically changed is not an overstatement.

The Hen, more to come after reading all the comments.
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Okay, So I've now read everyone's comments, and I thank you all ...True, QAL, Paytona, Virge, Steve, anyone I missed, for the seriousness (and yes Retired, the 9-ers are SERIOUS business around here!) that you've given to my questions. I really needed help because I don't have a lot of shots at this, the Doctor appointments are too far and few for that.

The Doctor knows from the first appointment (though likely won't remember) that I am a medical speak geek, I told him my mother was a WW2 Nurse and my childhood was filled with reading all the books she owned, I also was training to be a pharmacist at one point so I'm inclined to use the terminology and to do my research.

I am a tiny bit concerned that he might be unhappy with my having fiddled with my settings BUT
1. If he is, then he is not the doctor for me. I want a partnership, not a paternal relationship. Most of what we need to do for our health is on our clock, not theirs. Partnerships inspire patients and the docs are more aware than ever, or should be, that they need motivated patients.

2. I had to wait something like 10 months for my appointment and then sleep study. I had to wait 3 plus months for my 6-8 week follow-up visit. I that doesn't allow him to understand WHY a patient would tinker, then I don't know what will. I'm not going to be offensive about it, but that's reality.
When one is living the torment my nights were prior to c-pap, one does not take lightly a single nights crappy sleep when better can be had.

Yes, I'm a little worried what if I would have been "better off" staying at 4-20? Is that likely? Might I have had less centrals somehow?

I have written down every step of the way, WHY I made each and every setting change. I have not made them willy nilly. No I can't make them with the expertise he has, and had he been available I'd have been more than glad to consult him. In that absence, I have done the best I know how.

I'm not about to dismiss him, he's one of the lead doctors, hardest to get in with at the sleep clinic at a major teaching university.
I don't expect him to be anything but kind, concerned and knowledgable.

IN hindsight I am very glad I sat at 4-20 (okay 5-20, I was suffocating at 4 with nasal pillows) for 20 days. It shows I gave the recommended levels a decent try. I am also glad that I took Paula02's advice, and sat at each level for longer than I had been in early days. This also gives the chance to make some realistic comparisons over time.

Ohmymy and Mongo. You two have hit the nail on the head. As a person who has at the time I got my machine, waking up to 10/11 times a night to pee vast quantities of clear pee (hence the polyuria as well as nocturia) I couldn't in the early days, abide MORE sleep disturbance, more awakenings.
IN the early days, of 5-20, the machine would wake me with it's runaways and whatever else it did that woke me AND I wasn't yet in the land of less pee. I had to find my way, to a place that met that compromise of "I can sleep with and through this, and I can get decent ahi"

The data I read on both Sleepyhead and Rescan (before MAC) showed that I have the settings broad enough to cover my highest pressure need. I could probably raise it one or two points if that would be helpful. Maybe I have the bottom too high, maybe that has triggered more centrals. But in the past week, they've been settling down a little. I'm currently at 7.8-14.0.

My numbers AHI wise were a bit better at 7.6-14.0 than 7.8 but it wasn't until 7.8 that I started getting the longer sleep blocks. Is that .2 too little to make a difference? Is that improvement just a co-incidence.

On the matter of comfort, well, I don't know what could be helpful AND less comfortable...a straight 13.0 perhaps? My 95% seem to live between 12-13.25 or so. I have the odd night out that stays under 10.0 No idea why.

Also in the early days of 5-20, my 95% was a little lower than my 7-14 ranges have. No idea why.

If they wanted to take away my machine, I'd have to go on the lam, or they'd have to pry it from my cold dead hands.

Any further thoughts?

I might share with you what I decide to focus on ask, for last review. I'll post between now and tomorrow.

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The doctor only needs to find you are benefiting from the therapy. AHI is a measure of efficacy not necessarily benefit. All of the improvements you cited in you sense of being rested, less fragmented sleep, les nocturia and polyuria are valid findings of benefits. The doctor may or may not consider AHI, after all not all machines produce that metric. So traditionally the DME checked compliance, and the doctor certified benefit qualitatively. You pass both. If you AHI was significantly above 5 on a regular basis, then the doctor might also consider whether your equipment or settings are optimal.

Data is easiest to interpret when you post the Daily Details tab with the data summary on the left (machine settings, AHI event breakdown, pressure statistics, and the graphs on the right with Events, Flow Rate, Pressure, and leak rate. Most of the other stuff we don't need, but sometimes snores or flow limitations might be useful. This is an example of my data when I was moving from APAP to BiPAP and I felt events were still too high. It's an example of format that gives a lot of information in a single image. Note in particular the pressure graph is tall enough to show detail of pressure changes, and this can be correlated with events.

[Image: 9h2EgUbl.png]

Similarly, you can zoom in on a periodic breathing event or apnea cluster and ask quesitons. Here are examples periodic breathing that falls short of being CSR.

[Image: j8L37m7l.png]

[Image: YfMrX6Nl.png]
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How'd you get that cool bar one at the bottom with just the flow rate blown up?

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