(03-28-2014 12:08 AM)WakeUpTime Wrote:
(03-27-2014 09:02 PM)robysue Wrote:
These folks are eventually diagnosed with CompSA and in many cases, they are eventually moved to an ASV machine.
I'm just wondering how many more months to hang in there and wait to see if the CA events go down from the persistent 5-6 (or higher) per hour. My daily data continues to show the CA's but the sleep dr. is sticking to the data from the initial sleep study.
Thanks for clarifying which numbers you're talking about. The average number of centrals per hour
is call the Central Apnea Index
and is abbreviate CAI. Likewise the OAI is the Obstructive Apnea Index and the AHI is the total Apnea Hypopnea Index, and they represent the average number of obstructive apneas per hour and the average number of (apneas + hypopneas) per hour. So you are talking about the CAI and OAI.
So first, in light of that let me review to make sure I really understand:
At IPAP = 11.5 and EPAP = 7.5, the OAI is usually about 3 and the CAI is usually about 6 and the total AHI is usally about 9 (or higher if the HI is not zero)
At IPAP = 12 and EPAP = 8, the OAI decreases to 2, but the CAI zooms up to 14 and the total AHI is thus about 16 (or higher if the HI is not zero).
And you've been at this for about 3 months. And the sleep doc won't look at the data your machine is recording.
Have I summarized things correctly?
So right now the problem is: The current BiPAP and its settings leave you with too many residual events, (the AHI > 5 and the CAI > 5), and the majority of the residual events are centrals. But the doc won't budge on considering the need for either an official pressure adjustment or switch to an ASV machine. And the doc keeps telling you some version of "Give it more time."
Here are my thoughts and ideas.
1) There's no point in increasing the pressure since CAs are not treated by pressure increases in IPAP or EPAP. Indeed, as you've seen, additional (full time) pressure can make the CAs worse, not better.
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.
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? 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.
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. 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.
Best of luck in finding a decent enough sweet spot between enough pressure to manage the OSA
and not enough pressure to trigger too many problems with the CSA