Fenelon wrote:http://imgur.com/a/3ncuv
'Glorious Failure' is how I would describe last night. Centrals all but disappeared but my OA score was the second highest it has been (after the previous day), and at least twice what it has been averaging. I did have a less restless night and fell asleep much quicker - but I will take this with a pinch of salt. I've only just begun to think about the advice regarding insomnia I received on here and I'm only on Chapter 5 of Dr Krakow's book, so it's too early to think I have begun to tackle the insomnia proper, and I think I probably fell asleep quicker due to the exhaustion of the last few days more than anything else. However, I'll keep reading the book and heeding the advice and work on the insomnia issue.
So there's been some progress on the insomnia front. That's good.
So when you look at the data, would you say the only times you were aware of being awake is around the times when you turned the machine off and back on? If so, then I agree with Pugsy that those clusters could very well be REM related.
And balancing the stomach issues with the need for more pressure during REM may be your long term goal.
But what of the apnoea? I had a little stomach discomfort last night but it was bearable and did not keep me awake, I was aware of it rather than affected by it. But it was present. Should I go another few nights as is, despite the OA result? Keep working on the insomnia, rather than the apnoea?
I would consolidate the work on the insomnia. Once you've got a week's worth of "Glorious failures" under your belt in terms of nights where the insomnia is under control, but the AHI is not, then you can work on tweaking the machine's settings.
My one small concern with that is that my insomnia comes and goes with seeming randomness. There's not always a clear reason why it is particularly bad one night/week and not bad the following. It's a bit of a conundrum for me at the moment, and, as always, opinions/input/advice would be greatly appreciated.
Here's the thing: Until you have really learned how to sleep
with the machine, every tweak you make to the settings is likely to trigger the insomnia. And while aerophagia can definitely make the insomnia worse, it is also true that insomnia can make the aerophagia worse: When you're lying in bed trying to get to sleep, there's a tendency to swallow any time it feels like a bit of air has sneaked into the oral cavity. And that swallowing does allow air into the stomach, which increases the aerophagia.
Also, I have managed to get an appointment with the sleep doctor next week, what questions would you ask?
First prepare for the appointment. You want your doctor to look at the daily detailed data from your machine. It would be nice if you could just trust the doc and his office staff to print out that data for you, but all too often when the staff is asked to generate a report, they just generate the overall summary data report, or even just a usage report. You could bring your laptop and show the doc the data in SleepyHead. He may or may not be willing to look at it since SleepyHead is an unofficial software package that he may never have heard of. Moreover, it would be more useful to you if the doc had your daily detailed data to look at
before your appointment so that he's not looking at it for the first time when you show up for the appointment.
So here's what I'd do to get the doc the data he needs to see: I'd download ResScan. I would generate a detailed data report myself a couple of days before the appointment and I'd print it out and either hand deliver the report to the office or fax it to the office with a note that it should go to Dr. X
before he sees <your name> on <date and time of your appointment>.
If you don't want to deal with installing ResScan and it's not too inconvenient, you might want to stop by the DME or the sleep doc's office a day or two before the appointment with the SD card in hand and ask the office staff if someone can download
the daily detailed data from your machine and print it out for the doctor. Ask for your own copy of the report they generate and bring it with you to the appointment.
When you arrive at your appointment, it's ok to ask whether the ResScan daily detailed report was given to the doctor. The office staff who check you in might not know the answer, but it is ok to ask.
When you are meeting with the doctor, here's what I think you need to do:
First you need to tell the doc about the aerophagia and the fact that when it's bad it can make it much harder to both get to sleep and stay asleep. Be honest about how bad your stomach hurts on the
worst nights, and don't let the doc brush off your concerns with a comment along the lines of "You'll get used to it."
Next have the doc review your sleep studies if possible with you. Specifically ask:
Is my sleep apnea significantly worse in REM? Is it significantly worse when I sleep on my back?
Next have the doc look at your machine's data. And ask whether the clusters are likely REM-related and ask whether he thinks you need to increase the pressure(s) and if so which pressure settings (min, max, both), and by how much. Then reiterate that you've had some issues with aerophagia and get specific instructions about what to do if the aerophagia gets worse when you increase the pressure(s)
Finally you need to ask a question along the lines of this:
If my stomach cannot tolerate the pressure increase that is needed to prevent the clusters of events, would it be worth trying a bi-level machine with a pressure support setting that is greater than 4?
Keep in mind that you most likely will only have 10 minutes to discuss what's going on with the actual doctor. So come with the things you want to talk about in writing so you don't forget about them.
