No Answers Yet For Problems With ASV

[ozij]

Did your sleep study show you have obstructive sleep apnea too, or are they only using the ASV to deal with the problem's you have initiating breathing spontaneously?

Yes, my actual diagnosis is OSA. I did have some centrals during my initial study, but not enough for diagnosis. During the titration study, the centrals got worse on CPAP, which is how I ended up with the BiPAP ASV. There was no mention during either study of a problem with initiating breathing spontaneously.

Well, a central apnea is a case of breathing not being initiated when it should be. Although when I used the phrase I was thinking of it in the context about what you told us of the MS affecting your brain stem.

So basically, what you're saying is that you had central events popping up during the titration - do you know at what pressure? - and now you're having hypopneas and feeling horrible. And all I can add to that is that those hypopneas may be central and not obstructive, in which case, raising the minimum won't help.

I wish I knew what to suggest, but I honestly don't - Has your RT seen your data? Have you made it clear how terrible you feel? Can you tell her you have to speak to the doctor?

O.

[BrianinTN]

Given that our underlying medical issues are completely different, I debated whether to even reply. But, I figure you can take it with a grain of salt.

As we chatted about in a couple other theads, we both have a good amount of residual hypopneas. For the last week and a half, I've lowered my min EPAP and have been sleeping significantly better and without as much daytime exhaustion as when I started the ASV and with higher EPAP. The ASV generally has been keeping EPAP fairly low and sometimes increases IPAP by a good chunk. I finally got my hands on all my sleep studies, and after talking with a friend who does PSGs for a living, we think there's a chance I was over-titrated. I'm planning on posting all that lab data in a new thread of my own but haven't had a chance yet. But the long and short of it is that at least in my case, it seems plausible those hypopneas are more central and I actually don't need much EPAP at all.

Like I said, this has limited applicability to you, but I figured I'd throw the information out there.

[Paper_Nanny]

Well, a central apnea is a case of breathing not being initiated when it should be. Although when I used the phrase I was thinking of it in the context about what you told us of the MS affecting your brain stem.

And I was thinking about it in reference to my low percent of patient initiated breaths.

So basically, what you're saying is that you had central events popping up during the titration - do you know at what pressure? - and now you're having hypopneas and feeling horrible.

I had centrals during the initial study, just not enough of them for a diagnosis of central apnea. I suspect it is because most of the centrals occurred during REM sleep and I didn't have a whole lot of that during the study. During the titration study, they tried straight BiPAP, but I was still having centrals, so they put me on the SV.

Just for the heck of it, here are the reports from the two studies.









A note about the summary on that report: Mister Doctor says central apnea is related to narcotic use and multiple sclerosis. I am NOT taking narcotics and did have him change the official copy of the report to reflect that.

I wish I knew what to suggest, but I honestly don't -

I appreciate the assistance you have given me.

Has your RT seen your data? Have you made it clear how terrible you feel? Can you tell her you have to speak to the doctor?

I will be calling her tomorrow, to make sure she knows how horrid I feel!! And to plead with her to please please make sure she talks to Mister Sleep Doctor when he is in on Tuesday.

I keep telling myself that maybe with some adjustments to the settings, I will feel okay again, but honestly, I am not believing myself all the time I say it. I am starting to feel pretty hopeless, like I am going to be so tired forever. I hope that is not the case.

Deborah

edit to update links to sleep study reports.

[Paper_Nanny]

Given that our underlying medical issues are completely different, I debated whether to even reply. But, I figure you can take it with a grain of salt.

I appreciate the reply. Take it with a grain of salt and a drop of tequila, I will, I will.

I've lowered my min EPAP and have been sleeping significantly better and without as much daytime exhaustion as when I started the ASV and with higher EPAP.

I think I will give that a try tonight and see what happens. I'm still trying to figure out the hows and why's of raising and lowering the various variables. Am wondering if I am right in thinking that a higher EPAP is more likely than a lower one to trigger central apneas in those who are prone to such things?

The ASV generally has been keeping EPAP fairly low and sometimes increases IPAP by a good chunk.

And the increase in IPAP will keep the airway open for those prone to obstructive events?

I finally got my hands on all my sleep studies, and after talking with a friend who does PSGs for a living, we think there's a chance I was over-titrated.

Awww, I want friends like that! I'm so tired I feel myself regressing to a more childlike state, where what i really want to do is have a big old tantrum, screaming, "Why does BrianinTN get friends like that and I don't?!? It's not fair!!"

Like I said, this has limited applicability to you, but I figured I'd throw the information out there.

Sometimes, I feel like everything in the world has limited applicability to me. And other times, I think everything indeed applies to me. Thanks for throwing it out there.

Deborah

[JohnBFisher]

Deborah, sorry I did not see this earlier.

You've had lots of great input. I would like to add just a few things.

First, you *really* need to discuss this with your doctor. The patient triggered breathing is very bad.

Second, I suspect the low patient triggered breathing is causing a lot of spontaneous arousals. That would result in poor sleep architecture and feeling really miserable. By the way, your sleep study shows no Stage 3/4 sleep, which would tend to indicate that is an issue.

Third, if (as I understand it) you have MS, then you can you might want to discuss this with your neurologist (if your sleep doctor is not one in the same). I was fortunate to find a neurologist who specializes in sleep medicine. But they are fairly rare. Still your neurologist might have seen other MS patients who have trouble with patient triggered breathing. That doctor might have a suggestion on how to address the problem.

I wish I could add more. Do keep us updated. Best of wishes as you struggle toward better sleep!

[Paper_Nanny]

First, you *really* need to discuss this with your doctor. The patient triggered breathing is very bad.

Second, I suspect the low patient triggered breathing is causing a lot of spontaneous arousals. That would result in poor sleep architecture and feeling really miserable. By the way, your sleep study shows no Stage 3/4 sleep, which would tend to indicate that is an issue.

Yes, I got the impression the patient triggered breathing is pretty bad. I menitoned it to the PA at the sleep clinic. She may not have fully understood how bad the percentages were. Depnds on whether or not she was listening to what I was telling her. What she did say is that I need not be concerned with the PTB's as it shows the machine is kicking in and doing its job. Do you think it is possible th low PTB's are causing arousals, even with the ASV kicking in and doing what it does?

I asked about the lack of stage 3/4 sleep. I was told it was because older people rarely have the deeper stages of sleep. (I am 44.) I had a sleep study in 2006. No apnea found then, but a note that I had abnormal sleep architecture "in that an absence of delta sleep and reduced amount of rapid eye movement sleep and delayed rapid eye movement sleep onset."

Third, if (as I understand it) you have MS, then you can you might want to discuss this with your neurologist (if your sleep doctor is not one in the same). I was fortunate to find a neurologist who specializes in sleep medicine. But they are fairly rare. Still your neurologist might have seen other MS patients who have trouble with patient triggered breathing. That doctor might have a suggestion on how to address the problem.

I went to see my neurologist right after my sleep study showed apnea and delayed onset REM to see if any of my medications might be the culprit. During that visit, he told me, "I don't know anything about MS that you couldn't figure out on your own." He also said, "If you get a savvy patient with internet access, that patient coould figure out more on their own than I could, given the limited amount of time available to me." So... I don't hold out much hope for him giving me any useful in put with this!!

BUT, I might at some point see if I can find someone who specializes in sleep medicine and neurology. I'm sure it will entail some travel on my part, but hey, that's what happens when one lives where I live.

And PLEASE, no replies telling me to switch doctors!! The story as to why I am still seeing this guy is long and convoluted and the bottom line is, I know he is ignorant and for the time being, I am comfortable with that and will NOT be switching doctors.

I wish I could add more. Do keep us updated. Best of wishes as you struggle toward better sleep!

Thanks!!

Deborah

[Paper_Nanny]

I've lowered my min EPAP and have been sleeping significantly better and without as much daytime exhaustion as when I started the ASV and with higher EPAP.

I think I will give that a try tonight and see what happens

And that is what I did last night. My original minEPAP was set at 8. Last night, I lowered it to 7. I asked Husband before going to bed, "Should I lower it to 7 because I am Prudent and Careful, or should I lower it to 6 because I am Desperate and Tired?" He said lower it to 7 because he doesn't want to be Anxious and Worried. So, I lowered it to 7 for that reason, not because I was being prudent!

Anyway, graph is posted of last night's sleep. The AHI was lower than with the minEPAP of 9, but still too high. The hypopneas were spread out more evenly throughout the night instead of being clustered like they were with the EPAP raised. I don't feel quite as wiped out so far today as I had been feeling, but still don't feel well rested. Could be I am still waking up for the day.

What the graph doesn't show is that after 9.5 hours of sleep, I woke up, turned the machine off, took the mask off, and laid in bed, petting my dog, as I do every morning. During the morning pets, I fell back asleep and woke up 2.5 hours later when Husband came home from work for lunch. So, twelve hours of sleep.

One other observation. When I bumped the minEPAP up to 9, my AHI was 9. When I bumped it down to 7, the AHI was 7. I see a pttern here. Tonight, I think I will bump the min EPAP down to 4 and maybe my AHI will finally below 5 and I will be feeling so much better. I may not be prudent, but I am sure as heck logical!!

Deborah

[BrianinTN]

I took a very quick look at your report images, and it's tough to make out the numbers, but it looks like you had more central apneas than obstructive apneas in your diagnostic study. Is that right? And that your AHI during your ASV titration was actually slightly worse than in your diagnostic study (5.7 in the diagnostic and 7.6 in the titration) while your total RDI was about the same (7.2 and 7.6, respectively)? I know those numbers are over the course of the whole nights, and the report says in the text that the final settings "resolved all apneas," but it would be nice to know how things progressed. They only had you on the final settings for about an hour it looks like.

Am wondering if I am right in thinking that a higher EPAP is more likely than a lower one to trigger central apneas in those who are prone to such things?

A higher pressure can trigger central apneas in some people, yes. I don't know for those people whether (a) more pressure leads to more centrals; (b) more pressure leads to an increased likelihood of centrals; and/or (c) exceeding some person-specific threshold makes centrals more likely. Maybe someone can chime in on that point.

And the increase in IPAP will keep the airway open for those prone to obstructive events?

Actually it's increasing EPAP that's primarily used to address the obstructive apneas. Increasing IPAP can address "partial airway obstruction such as hypopnea or periodic breathing" (source: Respironics BiPAP autoSV Titration Guide).

One other observation. When I bumped the minEPAP up to 9, my AHI was 9. When I bumped it down to 7, the AHI was 7. I see a pttern here. Tonight, I think I will bump the min EPAP down to 4 and maybe my AHI will finally below 5 and I will be feeling so much better. I may not be prudent, but I am sure as heck logical!!

There are of course the usual words of caution here -- that you should keep your doc in the loop (yeah, I know, you can barely reach the guy), that it takes time for the body to acclimate to new settings, that you should carefully document what settings you had when, and that you should be wary of possible interactions between your changes and your neurological issues. It's all pretty sound advice, and having read your posts, I know you know all this. I'm beating others to the punch on the warnings, though, because on the flip side, I also thoroughly understand your frustration and exhaustion, having been dealing with it recently myself. In looking at last night's data report and your sleep studies, it isn't clear to me what EPAP is required to address your obstructive events, or whether these hypopneas are obstructive or central in nature. I fully admit that may just be naïveté and ignorance on my part, but at least to my untrained eyes, some of this is perplexing.

[Paper_Nanny]

Last night, I set the minEPAP at 6. Checked the data this morning. The % patient triggered breaths was up and the AHI was down. I think this might be progress!

Any additional observations/ comments about the newest graph?

I feel pretty groggy this morning, but I only just woke up. Spent a long time dreaming, at least toward morning. I don't remember dreaming the rest of the night, but may have been. That could account for some of the grogginess.

I think I will leave the minEPAP where it is for a few nights and see what happens as my body adjusts. Also hope to hear from Mister Sleep Doctor's office today. Not holding my breaths on that, though. Curious to see if his advice will match up with the course of action I have chosen.

Deborah

[BleepingBeauty]

Wow, Deborah. Last night's data looks MUCH better!

I would leave the settings as-is for at least a few more days to see how things pan out, but I think you're going in the right direction.

[Mr Bill]

Please take my suggestions with a huge grain of salt. I'm no medical doctor.

I see in your graphs that when breathing faster you have better patient initiated breaths and when breathing slower I am guessing the auto backup rate is kicking in and initiating the breath for you. I'd suggest asking your RT to ask Respironics what the auto backup rate is and whether they think it might be preferable to set one explicitly. In my case, I found that actually setting a backup rate just a little below my slowest breathing made things more even throughout the night. It used to wake me up when the backup rate kicked in with a big wosh of air. It looks like lowering your min EPAP to 6 has helped quite a bit. Maybe those higher EPAP's were "over titrating" and causing hyponeas. I suggest that if it feels comfortable, setting a min PS of 2 since you have that as an average. I suffer from CSA and it feels easier to me, to start a breath with a minimum PS set. My reasoning is that having a disturbance in flow can partially wake you and then you get some sleep onset hyponeas and maybe it keeps repeating. So my suggestions are what seems to sooth me from waking and maybe they will work for you.

[ozij]

Congratulations, Deborah. That looks so much better!

[Paper_Nanny]

Congratulations, Deborah. That looks so much better!

And last night's looked even beter, still! I am in a hurry and can't post the graph, but I will tell you, PTB last night was 96% and AHI was... 2!!! Wowzers!!! Two!!! Didn't think I would be there!

Mr. Bill- I will look over the graphs in light of your suggestions. Thanks for the input.

I will post the graph from last night later on today. Like I said, I am in a hurry, but I was so excited by last night's numbers, I just had to post!

Deborah

[BleepingBeauty]

And last night's looked even beter, still! I am in a hurry and can't post the graph, but I will tell you, PTB last night was 96% and AHI was... 2!!! Wowzers!!! Two!!! Didn't think I would be there!

Congrats!

[OutaSync]

And last night's looked even beter, still! I am in a hurry and can't post the graph, but I will tell you, PTB last night was 96% and AHI was... 2!!! Wowzers!!! Two!!! Didn't think I would be there!

Fantastic! Are you feeling better today?