I probably have more questions than answers for you, but we need the answers in order for us to help you make it through the next month when you can see your doctor.
Please note: The quotes are not necessarily in the order you wrote them, but they are in the order I want to talk about them.
cmdBOSS Wrote:My initial respiratory profile (I do have this data,but NOTHING on the sleep studies since then)
November 2015 CAI: 1.8, AHI: 18.3 events/hr, RDI: 40 events/hr
Do you know why you were put on an ASV machine? There's nothing in this initial diagnostic study that explains why you're using an ASV instead of a simple CPAP/APAP or bilevel without ASV.
Quote:Last Lab titration in March my AHI was 0, my REM was 0%, and my Sleep LMI was back in the 50s and I'm now grasping on to any semblance of sanity that I may or may not have left.
Quote:now I have data! I found out that I have some RLS going on that could not be addressed during the study aka I got to suffer and everyone was surprised my stubborn ass didnt drop out..
What pressure(s) were recommended after that last lab titration? And has the SleepLMI issue been addressed?
Have you been officially diagnosed with either periodic limb movement disorder (PLMD)
or restless legs syndrome (RLS)
? Both of these conditions can ruin sleep almost as effectively as untreated OSA can. And it's quite possible for a person to have both OSA and (PLMD or RLS). Both PLMD and RLS can be treated through the use of prescription drugs and it may be time to look into whether one of these conditions is what's currently ruining your sleep.
Quote:Hi, I have been working with a research team for several months studying the benefits of PAP therapy. When I entered this program 4 months ago I was completely non-functional, mentally and physically, with a diagnosis list a mile wide. Over the course of the first few months, I improved significantly, ALL symptoms of ALL diagnosis, dissipated, and I got my life back, after a decade. Well, the last month of the study an adjustment was made and I began swallowing air.
Quote: At slight AHI (between 1-2) my SleepLMI is around 26, REM at 6.8 (AND I FELT GREAT FOR THE ENTIRE MONTH :-) :-) , except for the ten minute morning burp session)(minEPAP13, maxIPAP26, PS 11/6)
We need some clarification: Was your initial prescription for minEPAP13, maxIPAP26, PS 11/6?
And was the initial script for the ASV that you are currently using?
At minEPAP13, maxIPAP26, PS 11/6
was the ten minute morning burp session tolerable? As in, once you got through it, you were fine for the rest of the day? And you were NOT waking up during the night with severe pain in the belly from the swallowed air?
Given the AHI at this pressure setting, why were adjustments made to the pressure?
Was the pressure reduced after you reported the 10-minute burp session? And if so, exactly how bad did you describe that problem? [I ask because I was blown off for 2-3 weeks when I was newbie and reporting very severe problems with aerophagia that were leading to a serious case of insomnia: I repeatedly ask if the pressure could possibly be lowered for almost a month before the PA reluctantly ordered a switch to APAP for an autotitration for a week.]
You also write:
Quote:Well, the last month of the study an adjustment was made and I began swallowing air.
What adjustment? Do you remember what the pressure settings were when you realized you had began to swallow air?
By the way, the swallowing air problem is usually called aerophagia around here and I'm going to start using that word to describe what you are talking about.
When the pressure adjustment was made, did the "10-minute burp session" no longer work in the sense of your being able to burp out enough of the excess air to be comfortable during the daytime? Or do you mean that you started to wake up at night with air in your stomach?
Quote:For some reason, this was not properly addressed and I steadily declined, right back towards where i was before using the PAP. Right before the study ended, adjustments were made to bring me down to levels without air swallow.
Quote:Device: ResMed AirCurve 10
Current Settings: EPAP min:8.0, max 11.0, PS min:5.0, max 11.0
Comment by RS: Is that max IPAP setting correct? With a PS min = 8 and EPAP min= 8, IPAP must always be at least as big as 13>max pressure setting
Quote:My conditions (both physical and psych continued to worsen, and I have been adjusted about ten times since then and by end of testing (4/8/2016) at minEPAP 7, IPAP 21.0, PS 10/5 - END RX
Which of these settings eliminated the air swallowing?
If so, can you describe what problem(s) then became?
What is your machine-reported AHI at these settings?
It's possible that the AHI is not sufficiently controlled at these settings, and that could be why you "can't work, can't think, can't sleep". Or, given that last lab titration, it's possible that the sleep limb movements are what is messing up the sleep even though the OSA is under control. Without seeing your daily detailed data, there's no way for us to tell you what the current problem might be.
Quote:What I need to know, if the air swallowing is something I can tolerate, are there medical implications that I am unaware of that I need to know about in relation to gulping air on a nightly basis.
I am unaware of any long term consequences of "gulping air" in the sense of physical problems caused by the air---as long as you can comfortably burp it out (or fart it out) in the morning.
But: Gulping a lot of air can lead to extreme discomfort and a visibly distended belly that lasts for more than a 10-minute burp session in the morning. When severe aerophagia happens on a nightly basis, it can make your life miserable. I speak from experience. At its worst my aerophagia would stay around all day long (I'm not a very effective burper or farter apparently) and I'd still have some swelling and belly pain at bedtime when I had to put the mask back on again. That led to some real issues with "fear of bedtime insomnia" as well as even more aerophagia to deal with. The short term result was that I felt significantly worse during my first 4 months of PAPing than I'd ever felt in my entire life. The long term result was that my already not great sleep was totally and thoroughly thrown out of whack for over a year. (And I still deal with the consequences of that CPAP-induced insomnia on a regular basis.)
So the real question on the air swallowing is whether it really is minor enough for you to tolerate or whether it is (or was) severe enough to warrant the doc suggesting that the pressure be lowered until the air swallowing went away. We can't answer that question for you.
Quote:central apneas do not seem to be a problem for me. I cant function at an AHI of 18 and that has been addressed with the ASV.
Again there's the question of why the ASV instead of a simpler machine?
When the ASV algorithm kicks in, the machine is triggering breaths by vastly and suddenly increasing the IPAP pressure, while leaving the EPAP alone. These wide pressure changes can make it much more difficult for some people to learn how to sleep with an ASV machine than it is to learn how to sleep with a simpler machine.
Quote: So now I'm trying to find that sweet spot, living with an optimal AHI for minimizing the RLS.
The answer may be more complicated than trying to address both the AHI and RLS by looking for a sweet spot on the ASV machine. You may need to address the AHI with the machine's settings and the RLS with a prescription medication designed to treat the RLS. There are several medications that can be used to treat RLS and it may very well be time to try one of them. But that, of course, can't happen until you have a chance to see the doc.
Quote: Im also having a hard time understanding the algorithm for the AutoASV, considering switching to ASV so I have less variables in the mix... what are your thoughts on this?
The only difference between the AutoASV and the ASV algorithms is that the AutoASV can increase the EPAP in response to obstructive events and snoring. If you switch to ASV, you must set the (fixed) EPAP high enough to prevent the obstructive stuff from happening. And a higher EPAP may increase the tendency to swallow air.
Still if you do decide to go this route, the fixed EPAP ought to be set to your current 90% EPAP pressure
as shown in the SH data over the course of at least a week with the current AutoASV settings.
Quote:At the moment (until I can see a doc in 6 weeks) I am self titrating the ASV, and taking valium and elemental iron before bed to minimize the muscle spasms.
Don't know if either of these will actually help with the RLS "muscle spasms". But they're worth a try. It might also be worth eating a banana or two every day since low potassium can also lead to muscle spams: Before my father's RLS became very severe, he would swear that eating bananas helped. (Then again, his RLS continued to worsen through the years and he's now taking gabapentin to treat the RLS. The gabapentin really helps him most of the time.)
You also write:
Quote:Any pressure change advice for me ASAP????? I am so lost, but I need to start doing something. Please help. Thank you
If your current problems are really caused by the RLS, tweaking the ASV settings probably won't help much.
But I would suggest that you change the AutoASV settings so that you are most comfortable
when you are sleeping (or trying to sleep). Define most comfortable
in your own terms: Use the pressure settings that seem to not trigger too much aerophagia, but also manage to keep the AHI < 5.0. Only you can define what "too much aerophagia" is. If a 10-minute burp session is acceptable to you, then tolerate it. If it gets to the point where you can't burp or fart the excess pressure out, then you know you have to deal with the aerophagia issue in a more proactive fashion.
Quote:I've slowly been working myself up, now at minEPAP 8.8, maxIPAP 22, PS 10.2/5.2... slowing trying to get IPAP back into high 20's, I seem to have a less than optimal AHI at that level, but significant RLS drop.
When you say the RLS drops when the IPAP is in the "high 20's" what exactly do you mean? Do you mean the 90% IPAP is close to 25? Do you mean the median or average IPAP is close to 25? Do you mean the min IPAP is above 20?
And what happens to the AHI when the IPAP is allowed to get into the "high 20s" and stay there for long periods of time?
Again, some daily data would help us help you.
Finally you write:
Quote:I'm not a Doc, but I can't get in until the end of June
Quote:It's a complex situation and something I really should not be handling myself.
I would call the doc's office back and ask them to put you on a "cancelation list". That way you may be seen a whole lot sooner than your scheduled appointment.
Also the squeaky wheel gets the grease, or so they say. So another tactic is to call the doc's office frequently and ask (repeatedly) to speak to a nurse or pa or the doc about the severity of your on going problems. They may be able to work you in on a "semi-emergency" basis. That was something I had to learn from my husband in my own early, very difficult transition: He kept telling me that I absolutely had to call the doc's office every day if necessary
to report my on-going problems and their severity until they told me to come in. At times he took it upon himself to make the damn phone calls since I was literally too scared and too dysfunctional to do so.
In the meantime, I'd also suggest a journal to keep track of the RLS symptoms
and how bad they seem to be as well as the aerophagia (air swallowing)
. Track the AHI if you want, but that's probably less important than you think as long as it's under 5.0.