(06-12-2014, 01:48 PM)jcarerra Wrote: Last night -- just for completeness.
It is typical of the nights where I have clusters (most nights)...some reasonably normal breathing, some a bit disturbed, and really crazy stuff during the cluster.
It is clear that I shift into some "mode" that is very different from other times during the night. I strongly suspect it might be REM slepp time, but am not sure.
I'm not convinced that the problem is REM sleep. If the clusters were REM related, you'd have several clusters each night with roughly 90 minutes between the end of one cluster and the start of the next. And, since REM cycles typically increase in length as the night goes on, the length of the clusters would start off relatively short and increase through the night.
But you seem to have one or two really long and really nasty clusters of events. The last one you posted lasts for about 50 mintues. It may (or may not) be starting in REM. But REM cycles are not usually close to an hour long, particularly that early in the night. So even if these clusters start in REM, something else is keeping them going. (Although REM-rebound might also be a factor, I suppose.)
Have you got copies of the full report of all your sleep studies, including the summary graphs? That's the starting point: What does the ln-lab data actually say about your sleep? Yes, I know it's a snapshot, but the extra data gathered from the other channels is important.
For example: Does your diagnostic sleep study say anything about your OSA being substantially worse in REM? How much REM did you get on the titration study? And did either study indicate things get worse on your back? Was this kind of clustering evident on either of the in-lab tests? And, although the vast majority of these apneas are being scored as OAs, it's also important to look at whether there were any centrals scored on either sleep test. Those are all important questions to keep in mind when trying to figure out where to go from here.
(06-13-2014, 07:02 AM)jcarerra Wrote: It bothers me a little to know, though, that 90+ percent of people who end up in the CPAP/APAP world are not equipped or able to do any more than what the docs and DMEs tell them. which frankly is doggone little comparatively. I've learned 100 times more here than from my 'team.'
We who are "into it" enough to end up on this or other boards, are out on the tail of the curve--and even for us, it is a rocky road to traverse. Most people, I surmise, are given the car, taught how to start it and turn on the radio, but don't really know how to drive it. << (Not a great analogy, but maybe you get what I mean.)
In my case, I fully believe I could go on using the machine, still having the major clusters of events the vast majority of nights, and, absent knowledge of what is happening (most people), nothing would ever change--the not quite right therapy program would continue ad infinitum.
Sad but true. And chances are that if you didn't have any idea of what was going on, you'd eventually just give up and chuck the damned machine in the closet and quietly conclude that CPAP just wasn't for you and there was no point in using it ...
But do keep in mind that the art of practicing medicine itself changes over time. Once upon a time people with high blood pressure were not taught how to monitor their HBP at home and diabetics were not taught how to adjust their insulin based on what they planned on eating. I do hope that eventually the sleep docs will start to get it and understand that patients who are more involved in their therapy do eventually do better than those who are not.
Quote:As it is, I SEE what is happening, but don't really have a comfortable feeling about what to do about it--what the right approach is. Change things on my own with inputs from here? Print out the numerous charts that would be necessary to tell the whole story and take to my PCP (yeah, that'll work)? Do nothing for XX undetermined days? Then do what? How do I even know if there is a therapy scheme that will even eliminate those clusters? Previous are rhetorical questions of course--musings.
Here's my suggestion on strategy:
I would do nothing for at least 4-7 days other than gather data at the current settings. Too much dial winging makes it hard to pick apart what is trouble adjusting to new settings (restlessness and light sleep due to things being different) and what is real. Also sleep varies from night to night.
At the end of 4-7 days at the current pressure setting, it's time to evaluate all the data. If the clusters are continuing, then it's time to start trying to figure out what (if anything) they have in common. And at this point, you start preparing for your conversation with the doctor. What conversation depends on which doctor is currently handling your sleep issues.
If the PCP is the gatekeeper that you have to get through in order to see a sleep specialist, you make the printouts showing the large clusters of events that are continuing to happen every night and you tell the PCP you are not feeling any better even though you've been on PAP for at least 3-4 weeks. (Seriously: complaining of not feeling any better during the first month is most likely to be "adjustment" problems, and so you have to be prepared for that. Easiest way to convince a doc that it's not adjustment problems is a combination of bad data AND enough time on the machine where the bad data can't just be explained as "adjustment problems".) Point out the huge clusters of events that are happening and ask the PCP doc point blank, but politely: Is it time for a referral to a sleep doc?
If the consult is with a sleep doc, you should bring the data card AND printouts from ResScan. Some of the printouts should show what the breathing in a cluster looks like on a breath by breath basis. (In other words, if that periodicity that I noted earlier continues in ALL the clusters, that's something you need to make the sleep doc aware of.) You should tell the doc that this kind of cluster is happening a lot and tell the doc any factual
things you can about what the clusters have in common. Try not to speculate on the causes---you're paying the doc to figure out why those clusters are continuing to happen. If the doc simply says to increase the pressure, it's ok to ask: How long should I use the new pressure before the clusters should disappear?
It's also reasonable to ask: And if the clusters do not disappear what's the next step?
If the clusters do NOT disappear with a modest and reasonable increase in pressure, then the next step really is a trip back to the lab to see if those clusters have a significant central component to them, even though the apneas are being scored as OAs.
In other words, I'm not sure you're going to be able to just dial wing your way out of this because it seems to me that there may be something else going on.
But: If you can't get appointments with your PCP or a sleep specialist within the next month or so OR if you feel as though you must address what's going on by yourself, then here's my advice on dial winging: Go SLOW
Seriously: Go very, very slow. Increase the pressure by no more than 0.5-1.0 cm at a time. And leave the new settings in place for at least 4-7 days before making the next pressure increase. If the clusters are STILL present every night when you've increased the pressure up to 16-18 cm, then something is really wrong and you really do need to see a sleep doc and get some advice. More pressure is NOT always the answer: In some PAPers, too much pressure can trigger unstable breathing patterns caused by problems with fluctuations in the CO2 levels in the blood.
And if you do wind up being in that small group of PAPers who develop on-going, problems with pressure-induced unstable breathing, all hope is NOT lost. The long term solution (which will need to be determined by a sleep doc) might be a change in the type of machine (and not to an APAP). Or it could be going back to a lower pressure setting and seeing if the breathing stabilizes with time: For many PAPers with a correct pressure setting that induces problems with unstable breathing, the unstable breathing problems will resolve themselves after a month or so of CPAP therapy at the correct