CENTRALS

littleredtree wrote:just one more question for this minute

What can they do if I change the machine myself? would they drop me as a customer?
I am a chicken still. Afraid to mess it up.
Will most likely have my son do it. He is a master at reading instructions. And I think he already did his. I will have to check on that.

Not really what they can or will do but what will your body do. YOU are a very complex patient and should not just go adjusting pressures. Doing so might only confuse your doc.

I would, however, stay right on top of my doc to make sure my therapy was going well. That means educating yourself here. But that also means alot of time and reading and many more questions.

Learn to read the Encore charts they gave you, right off.

I had therapy-limiting centrals during my split-night sleep study. The recommendation was a more thorough titration with BiPAP if needed. They also mentioned switching to an adaptive servo ventilator (SV or ASV as has been discussed here. This is a fairly new machine, and quite expensive.) if the centrals kept happening. Despite these recommendations, my sleep doctor wisely started me out with APAP on a fairly narrow range-- 10 to 13 cm/H2O (centrals started to really appear about 12 or 13). She knew from the get-go I would be purchasing my own machine and managing my therapy. After extensive research, I purchased a DeVilbiss IntelliPAP autoadjust, which so far has met my needs.

In any case, the doctor was right. Suspected centrals were observed when I started out my therapy, but nowhere near the level seen during my PSG. They have been there ever since, but have actually decreased as I have slowly raised pressure. My OSA has been very stubborn to treat, and that without having a chunky neck. So over time, I have slowly raised pressure from 10-13 to 13-18, and this has been well tolerated. The doctor wants me to try 14-18, which I did for 2 nights last week, after having been at a minimum pressure of 13 for a month. My results were not favorable, and I slept very poorly. Furthermore, the 'NRI' (Non responsive events) score on this machine, which are typically 'centrals' went up quite sharply both nights. As I was about to travel, I backed down to 13 cm and have had several 'OK' nights. I am going to try again for a few more nights and see if things settle down.

All this time, I have only had about a week where my AHI averaged below 5, and just barely below (That was with pressure 13-17). I have a strange feeling that, despite being able to tolerate the high pressures just fine without pressure relief, I am probably going to end up having to use a BiPAP, or possibly even an ASV. The few nights when I have had really low AHI's have also been the few nights when I felt just super the next day. So when things are more complicated than simple OSA, you really do have to work at your therapy. (BTW, I have no health problems that would normally accompany compSAS, and there are a few others here like that as well.)

Even though I have been setting pressures on my own, based on advice given here, and my doctor's suggestions, so far this has been relatively straightforward OSA. The settings for a BiPAP, and especially an ST or ASV machine are quite complex, and Rested Gal is right in that you should not mess with them unless you REALLY understand what you are doing. If you seek out and read some of the posts on this site posted by a gentleman who goes by the moniker 'SWS', they will give you an idea of what has to be considered by your doctor or sleep lab technician in setting up and using the ASV. Both you littleredtree and JohnBFisher would benefit from reading these posts, even if you have to read through them a few times to really understand them.

In any case, best of luck to both of you!

timbalionguy wrote:... I purchased a DeVilbiss IntelliPAP autoadjust, which so far has met my needs.

Glad to hear you are doing well with managing your sleep. You are right that you can and should proactively manage your own symptoms. Using the data on my Respironics BiPAP was one way I helped demonstrate my current therapy was not working - in spite of being compliant.

timbalionguy wrote:... Both you littleredtree and JohnBFisher would benefit from reading these posts, even if you have to read through them a few times to really understand them.

In any case, best of luck to both of you!

Yup. I am taking the time to read and learn. I know there is a good bit to learn. I also realize that you can manage your own situation. From my own experience, I know how delicate that balance can be. For the average user who is generally satisfied with their sleep, I don't recommend tinkering with the machine. But if the therapy continues to miss the mark, then working with the doctor (as you have done) it certainly can work. Why do I suggest working with a doctor? Sometimes it' is very wise to have the second pair of eyes keeping an eye on your progress. Ideally they will bring their experience to bear.

But I definitely agree there is a lot for me to learn. I'm reading and absorbing.

littleredtree wrote:Then, I asked if they would fix my machine so It showed me ALL information available. They said NO. Big surprise.

Whoa!!
Now THAT would infuriate me. grrrrrr. You can bet I would definitely go into the clinical menu on the machine myself and set it to show me ALL the info it's capable of showing in the LCD window. Not that it can show much (LOL!! ), but I would want to see everything/anything it can show. The nerve of them! GRRRRRRR.

littleredtree wrote:They did take my card and read it, and give me a copy.

How many pages was the printout they gave you? If it wasn't at least five pages, it was not the "Full Details" report. Less than five pages would be a Summary or Trend report.

littleredtree wrote:Was told to use it as is, for at least 1 month. Take the card in to be read. Then they will send the info to a sleep Dr.
I will call this Doctor in the am and see what HE wants me to do.

Good idea. And ask him to tell the DME to turn on the "Show AHI/Leak" feature so you can see Leak data in the machine's window. Tell him you'd especially like to keep an eye on your leak data since you're having some difficulty getting a mask fitting well. I wouldn't mention wanting to see the AHI. Just talk about turning on the feature that will show the Leak data. If viewing the Leak data is turned on, seeing AHI data will be turned on too...so, stress that it is the Leak info you want to be able to see in the LCD window on the machine.

And while you're at it, if that report printout the DME gave you didn't contain a "page 4" with a graph that looks like this one ("Daily Details") ...

...I'd also ask the doctor to tell them to print out the Full Details report from the download they did of your Smart Card. If the printout they gave you didn't have several "Daily Details" graphs on it, they gave you only part of the report.

Yes, RESMED ADAPT SV,,the best in my opinion for centrals,and regular cpaps for obstructions like the compact ,elite or vantage models by Resmed.

Good Morning everyone


Rested Gal you wrote “How many pages was the printout they gave you? If it wasn't at least five pages, it was not the "Full Details" report. Less than five pages would be a Summary or Trend report. “

I received a total of 12 pages, the first page is the summary page for the 4 days I had the machine. The numbers on the pages used a 4 day average.
I did not use it the 4th day.
So here are the numbers redone for a 3 day average.

Average time in Apnea per day 12.1min. Per day
Average time in Large leak per day 0
Average AHI 11.6
IPAP Pressure 10. Cm
EPAP pressure 6. cm

I have not learned how to read the other graphs yet. But I do believe these are the important numbers, aren’t they?

Page 4 was there. It shows flags on
OA -9.9
H- 1.6
VS- 27.1
AHI 11.5

When reading these, are the numbers an average of the 4 days total?
If so they are incorrect. As I did NOT use it the 4th day for more that a few minutes.

As for the machine set up to show info… I am asking my son or hubby to help me. I am still a chicken J
But know for certain, I am not changing settings with my pressure without talking to the Sleep Dr. I was going to call him today. Alas. They are not open today.

Hi
I got the guts to change the machine, so that I can see my leaks, etc. Yeah!! What a chicken I am.

My leak rate says 27.9
AHI 9.4
And I am at 90%

So there! to the DME'S that said no to fixing the machine this was.