YES, extremely well indeed.
(03-28-2014, 09:24 AM)robysue Wrote: 2) It's worth considering what happens if you DECREASE the pressure settings just a smidge: What happens if you use IPAP = 11 and EPAP = 7?? The number of obstructive events (OAs and Hs) is likely to increase, but the number of CAs may go down. The question is what happens to the AHI? If the total AHI goes down enough with the pressure decrease, then trading a few more obstructive events for far fewer central events just might be worth it.
Last night, IPAP=11 EPAP=8, results were CA:8.5 / OA:1.7 / AHI:11.1.
Previous night, IPAP=12 EPAP=8, results were CA:14 / OA:2 / AHI:17.
Yes indeed, you're right of course that lowering the pressure actually improved the CAI results -- though it's still high and last night was a crummy sleep (as usual). Strangely, the CA events seem to cluster every hour, almost predictively.
Regarding setting EPAP at 4, I had the impression that EPAP settings really don't affect OAI and CAI that much (only IPAP); that it was more of a 'comfort thing' finding something that felt the most natural while not having too high of a PS that would cause an overly stressful transition between inhales and exhales.
(03-28-2014, 09:24 AM)robysue Wrote: 3) I'm assuming that you are using your PR System One BiPAP Auto in fixed BiPAP mode rather than Auto mode. Is that correct?
(03-28-2014, 09:24 AM)robysue Wrote: If so, it may be worth switching to BiPAP Auto mode. That may let you use less pressure on average, while still allowing the machine to increase the pressure as needed to treat the obstructive events. If you go this route, I'd suggest using max IPAP = 11.5 and min PS = 4 as starting "caps" since you already know that centrals are a problem when the pressure gets up around this level. The question is what should min EPAP be set at? That's a question that you might be able to get the doc to answer. But if you are really up to experimenting without the doc's official permission, you might try starting out at min EPAP = 4 (the minimum possible EPAP) and see if you're comfortable breathing with the pressure that low. Track what happens for a week or so, and then maybe see if there's some kind of correlation of pressure settings and when the CAs start to emerge. And also track just how much pressure the machine wants to use to keep the obstructive events under control. If your median IPAP = 11.0 or 11.5 and your median EPAP = 7.0 or 7.5, you'll know there's not much room for decreasing the pressures from the point of view of managing the obstructive part of your problem.
Wow, ok. That's sure is a specific suggestion -- better than I'd ever get from any of the 'certified professionals'. Yes, I have to make the adjustments on my own. Sleep dr. says leave it at 11.5, you're cured, goodbye. RT says seem to need an SV machine.
(03-28-2014, 09:24 AM)robysue Wrote: 4) As for talking to the doctor. I've not had much luck here: I'm on Sleep Doc #4. Doc #1 fired me, Doc #2 and I fired each other at the same meeting, and I fired Doc #3. I get along with Doc #4, but part of that is that Doc #4 does use a patient portal system, and hence I can write emails which somehow provide for better communication in my case than the standard 5-15 minute face-to-face appointments ever did.
Wow again. There's so much demand for sleep experts that they are not providing the quality in-depth client care that is needed. If one doesn't push up the pressure considerably to improve their results and their service level, one will achieve sub-standard care filled with less than perfect implementations.
I'm eager to know, were all 4 doc's 'certified sleep dr specialists', or were some of them regular MD's, or ENT dr's or respiratory dr's? I'm asking because it's so difficult to find any medical professional that knows very much about sleep apnea.
(03-28-2014, 09:24 AM)robysue Wrote: That said, here's the standard advice given to people who feel as though their doc is not listening:
- Come with a short written list of questions you need answered. Better yet, try to drop a copy of list off a day or two before your appointment and tell the receptionist that you want to make sure the doc gets the list of questions.
- Provide a full Encore Viewer or Encore Pro report of the data from your machine along with the questions. I suggest Encore because it is the official software. Most docs have not heard of SleepyHead and even if they have, most are not going to trust SH since it's not official.
- Be sure to address this question from the doc: How are you feeling now that you're using BiPAP? If you are still feeling lousy, be honest. Keep your answer focused on subjective quality of life language instead of the data. As long as you say you are feeling "ok" or "sort of ok" or "not too bad", the doc is going to assume that things are "ok" and will likely improve with time and not look at the data. If you are honest about just how rotten you feel, you have a better chance of getting the doc to look at the data and notice there are a lot of centrals. But if you answer How do you feel? by talking about the machine's data, the doc probably won't hear you.
- It's worth writing down and rehearsing your answer to How do you feel? so that the answer focuses in on getting the point across to the doc that you are feeling lousy in spite of using the machine AND that you are not merely reacting to seeing "bad" data in the morning. The answer to How do you feel? should NOT contain the phrase "central apneas" in it.
- It's also worth preparing your response to the inevitable suggestion of You just need to give it more time. This is were bringing up the data may be appropriate. You need to politely point out that you HAVE given it plenty of time and things are not getting better. You need to point out that the AHI is still running above 5.0 most days and that the (vast) majority of your events are centrals. And that you need to know just how much "more time" the doc thinks you need before something starts to turn around. And if the titration study showed problems with centrals, this is where you point that out too.
I'm sure I'll have to go through 3-4 sleep professionals too before to get better results. My current dr wouldn't read my daily data and a list of questions would cumulative result in a 17 second combined response.
Thanks again Robysue. I'm sure there will be many other new users that will get many good ideas from your suggestions experience.