ASV Adjustment HELP!!!

[cmdBOSS]

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. 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. Now I am on my own, and on a waiting list to see doc in JUNE. Blind study, so I have NO data, other than my personal journal notes. I can't work, I can't think, I can't sleep.

Here is what I know now. (I didn't even know what device I was on prior)
Device: ResMed AirCurve 10
Current Settings: EPAP min:8.0, max 11.0, PS min:5.0, max 11.0

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

I have requested the clinician manual from apneaboard, and trying to set up software. Also trying to find a doc NOW.

Any pressure change advice for me ASAP????? I am so lost, but I need to start doing something. Please help. Thank you

[vsheline]

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. 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. Now I am on my own, and on a waiting list to see doc in JUNE. Blind study, so I have NO data, other than my personal journal notes. I can't work, I can't think, I can't sleep.

Here is what I know now. (I didn't even know what device I was on prior)
Device: ResMed AirCurve 10
Current Settings: EPAP min:8.0, max 11.0, PS min:5.0, max 11.0

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

I have requested the clinician manual from apneaboard, and trying to set up software. Also trying to find a doc NOW.

Any pressure change advice for me ASAP????? I am so lost, but I need to start doing something. Please help. Thank you

Hi cmdBOSS, welcome to Apnea Board.

You don't say whether the pain of excessive air swallowing is keeping you awake or whether you've stopped using the machine.

You will probably be receiving the setup manual for your machine within a day or so.

I think SleepyHead works for your machine, and most users find SH easier to get started with. I usually use ResScan to see my data, but SH is better in some ways.

When you are able load your data in SH or ResScan, you should be able to see all changes in the settings.

I think SH gives you a table showing all adjustment changes. ResScan is less convenient, because one needs to select each night ("session") separately and look on its Settings tab to see what settings were used during the session.

So you should be able to find in SH or ResScan what the settings were before the last change. Then, you can simply readjust the machine to the old settings.

However, if for some reason you are unable to get SH or ResScan working right away, because you seem desperate for a quick change which may un-do the bad effects of the last adjustment, I will offer the following suggestions:

Air swallowing is likely happening when the inhale pressure (IPAP) is raised very high. IPAP is equal to the present value of the exhale pressure (EPAP) plus the present value of Pressure Support (PS). PS is the boost in pressure during inhalation.

EPAP + PS = IPAP

EPAP is automatically adjusted to treat/prevent obstructive apneas and obstructive hypopneas. PS is automatically adjusted to treat/prevent central apneas and central hypopneas. ("Central" events are caused by the Central Nervous System failing to exert adequate effort to breathe, even though the airway is clear.)

If EPAP and PS are both at their minimum values (8 and 5, respectively), then your IPAP would be 13. But if EPAP is raised to 11 and PS is raised to 11, then IPAP would be 22.

(1) To prevent IPAP from going so high, you could temporarily lower Max PS to 8 or 9, which for average users (who do not have an unusual lung condition and are not morbidly overweight) is usually high enough to treat most central apneas.

(2) You could also temporarily lower the Max EPAP to 10, especially if you take precautions to stay off your back while asleep.

(3) Obstructive Sleep Apnea is usually highly positional, with sleeping on our back usually the worst position, requiring the highest pressures to treat. By staying off your back, you may avoid the air swallowing, because the machine likely would not need to raise EPAP as high. Some of us wear a tee-shirt with a couple tennis balls in a sock sewn on, lined up along the spine, high between the shoulder-blades. Some wear a small light knapsack with something light but bulky inside, Others use body pillows to help keep themselves sleeping on their side. Others sleep in a comfortable La-Z-Boy type reclining chair. Whatever it takes.

Take care,
--- Vaughn

[cmdBOSS]

Hi Vaughn, my apologies for taking so long to respond... I've been a mess lately, however, 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... I was able to download my CPAP data and view the lab titration results. I'm looking for trends over the span of the last few months; I've also been looking for research on patients with dual diagnosis. I havent found much other than treatment of the two conditions appear to counteract each other, which makes sense. I'm not a Doc, but I can't get in until the end of June, and I refuse to live like this! I'd like to give you an overview of the trends I'm seeing, and maybe you can give me some "non-medical, friendly suggestions" on how to proceed. :-)

What I think I'm seeing from the Lab reports and the ASV data, is that with high AHI around 18, 20% REM and SleepLMI in 50's Im at my worst (prior to treatment). 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) . RX continually lowered from this point on due to air swallow. 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. If you include the additional data, these trends almost seem independent of REM% and O2 sat, 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. So now I'm trying to find that sweet spot, living with an optimal AHI for minimizing the RLS.

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. 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. 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?

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

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. Problem now is, I don't have anymore Lab Titration data to work with....

You have no idea how thrilled I was to see your response to my post. It's a complex situation and something I really should not be handling myself. I catch a lot of grief for doing this, so I just ask people what they would do if they were lost in the woods with no water and their only option for survival was to drink their own urine. It usually shuts them up. :-) Thanks again Vaughn.

[robysue]

cmdBOSS,

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.

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.

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.

and

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.

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.

and

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:

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?

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.

and

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

and

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.

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.

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.

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.

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.

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:

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.

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.

Why? 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:

I'm not a Doc, but I can't get in until the end of June

and

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.

[cmdBOSS]

Hi! I really appreciate your response on this one. Unfortunately, I was so overwhelmed with the entire situation I had no idea how to even begin answering the questions. So here is an update, maybe you can help me out with.

I am feeling better, but still around 50%. I had another sleep titration a couple of weeks ago and still have the aerophasia. I have been diagnosed with "possible PLMD." I was unaware this was a diagnosis.

My sleep fragmentation total index was 30.7 events/hr, I also showed 0% REM for the night, which has been typical in the titrations, I don't believe I've gone above 6%.

AHI is 0.4, RDI is 4.8, I had no supine or prone position sleep, and my Respiratory Arousal index was 3.6. Limb Movement w/ arousal index N1: 21.1, N2: 6.5, N3: 0.7, REM: N/A, but PLM series was 0. O2 sat, Heart rate and cardiac are normal.

Here is something new, that i don't understand. Respiratory Sub-cortical arousals (RERSCA) Index was 25.9. (Note I had two apneas that night and both were central, they had always been obstructive before)

The doctor saw me after, and told me "everything looks good, see you in three months." Interesting because everything is NOT good, he doesnt seem to hear anything I say. I am currently taking a low dose of gabapentin which he is aware of, but didnt actually prescribe himself, because "everything looks good." I'm seeing an ENT in a few days because I simply cannot go on like this. Until this visit I was unable to get a clear answer to my question on what exactly is going on in my throat. The response was always, "its collapsing while you sleep." My primary received his notes from the post titration appointment and they clearly state, "enlarged tonsils, elongated adenoid, excessive soft palate tissue."

So here are some key notes on the settings:

initial 12/3/2015 MinEPAP: 10 Max IPAP: 30 PS:4-15 (12 days)
12/15/2015 Min EPAP: 10 Max IPAP: 30 PS: 4.8-15 (31 days)
1/15/2016 Min EPAP: 12 Max IPAP: 27 PS: 5.6-12 (13 days)

OPTIMAL - I felt like a million bucks 1/29/2016 Min EPAP: 14 Max IPAP: 26 PS: 6-11 (31 days) I had been taping my mouth shut kidnapper style this entire time due to mouth breathing, and a few days before they changed the rx again, I was instructed to try without taping. This is when the aerophasia began, its not painful, but my overall life functionality has gone out the window.

By early april 2016, they had adjusted my settings all the way down to Min EPAP: 7 IPAP: 21 and PS: 5-10. Then they cut me lose from the research and scheduled me to see the doc in 3 months. (still swallowing air) I eventually got fed up with feeling like I was suffocating at night and miserable all day, so I began messing with MIN EPAP. I was at 9.6 for a long time with occasional aerophasia. Just bumped it up to 10 and its back, i have not moved the IPAP above 22.8 this entire time.

That was the background, here's the questions! So before I have half of my throat cut out, I really want to understand whats going on here. Is there a good resource for understanding the ASV algorithm, in addition to understanding adjustments for the aerophasia? I should mention I can switch to CPAP setting, I've just never done it. Also, if I can stomach the aerophasia (no pun intended), is there a reason not to work myself back up to where I was when I felt normal??? Any thoughts on the REM? Im really confused why I am having central apneas when I have never had them before, if this continues there is no point in seeing a surgeon.

I really do appreciate your response earlier, looking forward to the next!