3-Month Update and Request for Advice

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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The Latinist
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3-Month Update and Request for Advice

Post by The Latinist » Tue Jul 22, 2014 11:48 pm

I was diagnosed with sleep apnea in April. During my sleep study, my AHI was 96, my average satO2 was 79% with a nadir of 60% and 61.2% of the time spent below 89%. My Epworth Sleepiness Scale score was 19. I had been suffering from chronic respiratory infections, had developed severe hyperkeratosis of the tongue from mouth breathing, and had had several episodes of supraventricular tachycardia (SVT). Oh, and my fit-as-a-fiddle father had just died in his sleep of a stroke at the age of 61.

So I've been using my CPAP machine religiously for nearly three months, now. In that time, my energy has increased, daytime sleepiness has decreased (my Epworth Sleepiness scale score has dropped to 6), I've even started exercising for fun and fitness -- something I haven't done in years. And in a recent overnight home oximetry study my average satO2 was 94% with a nadir of 81% and only 0.3% of the night (just over a minute) spent in desaturation. xPAP therapy has been life-changing.

That said, I'm not yet quite where I'd like to be. I feel like I'm 90% there, but there is still room for tweaking. My AHI is still higher than I would like, and my oximetry numbers were much better but have a little room for improvement. I'm seeing my sleep doc tomorrow for a follow-up, and I'm wondering if it might be advisable to request a full-night titration study (my initial study was a split-night affair with a leaky mask and they didn't have enough time to fully titrate me). He gave me that option last time, but I decided to go with a slight pressure increase and a home oximetry study first).

I'd love to hear what other people think. Am I right to hope to get my numbers even lower, or should I be satisfied where I am? Is a full titration study with my own mask the best next step?

Some data for you to consider:

Overview:

Image

The Last Two Nights (Pretty Typical):

Image

Image

If there's any other data anyone would like to see, please let me know and I will post it.

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SleepyToo2
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Re: 3-Month Update and Request for Advice

Post by SleepyToo2 » Wed Jul 23, 2014 5:13 am

You don't give much time for people to respond ... I am not familiar with APAPs, so I may be off base with what I am about to say. However, before going to the expense of another sleep study, I would discuss with the doc the possibility of raising the upper pressure (and possibly the lower pressure). It may be that you would do better with a narrower range, but I could be wrong about that. You seem to have got leaks under control, and your AHI is trending lower after the pressure increase. Make sure that your mask is clean and your straps are as tight as they need to be - when did you last get a new mask? Sometimes the straps get weak as they get older. Also, I would look at the effect of turning the EPR down (or even off): I found my AHI improved quite a bit when I did that. YMMV, given that your top pressure is 16, but it's worth a try to see how you feel and what it does to your AHI.

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sc0ttt
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Re: 3-Month Update and Request for Advice

Post by sc0ttt » Wed Jul 23, 2014 8:04 am

The Latinist wrote:Am I right to hope to get my numbers even lower, or should I be satisfied where I am?
These are good results; you don't have a single bad day out of 83.
I think if your AHI were 3 you'd be on a Quixotic quest for the unreachable 2.
It doesn't look to me like monkeying with your pressure settings is going to change anything. I'd expect further improvement would come from experience and getting even more comfortable with the machine.

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The Latinist
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Re: 3-Month Update and Request for Advice

Post by The Latinist » Wed Jul 23, 2014 8:38 am

sc0ttt wrote:These are good results; you don't have a single bad day out of 83.
You don't consider an AHI of 10 a "bad day"? That's enough to get an untreated person a diagnosis of sleep apnea. Indeed, I've had very few days under 5.
I think if your AHI were 3 you'd be on a Quixotic quest for the unreachable 2.
Wow, way to judge.

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Re: 3-Month Update and Request for Advice

Post by Drowsy Dancer » Wed Jul 23, 2014 8:53 am

My relatively uneducated opinion is that a good chunk of your AHI is centrals, but they're not so high that I would expect anyone to be proposing an ASV to you. It's only been three months. I think the process of getting used to sleeping on the hose can take a long time.

What do you think a second sleep study would add to careful observation of your nightly data? I'd be more inclined to ask your doc about modest experimentation with pressure changes, if you want to do some tweaking.

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49er
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Re: 3-Month Update and Request for Advice

Post by 49er » Wed Jul 23, 2014 8:58 am

Drowsy Dancer wrote:My relatively uneducated opinion is that a good chunk of your AHI is centrals, but they're not so high that I would expect anyone to be proposing an ASV to you. It's only been three months. I think the process of getting used to sleeping on the hose can take a long time.

What do you think a second sleep study would add to careful observation of your nightly data? I'd be more inclined to ask your doc about modest experimentation with pressure changes, if you want to do some tweaking.
DD beat me to the punch as I was also about to note that a good portion of AHI has been centrals without the need for an ASV. And since you feel you are 90% better. I definitely endorse her advice to ask the doctor about experimenting with modest pressure changes.

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palerider
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Re: 3-Month Update and Request for Advice

Post by palerider » Wed Jul 23, 2014 9:12 am

you might also experiment with epr changes, and see how that effects you, I've seen some people say their centrals go up with higher epr, though 1 isn't much.

it's also lowering your epap which may result in higher obstructives.

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sc0ttt
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Re: 3-Month Update and Request for Advice

Post by sc0ttt » Wed Jul 23, 2014 10:32 am

The Latinist wrote:
sc0ttt wrote:These are good results; you don't have a single bad day out of 83.
You don't consider an AHI of 10 a "bad day"? That's enough to get an untreated person a diagnosis of sleep apnea. Indeed, I've had very few days under 5.
Not really,no. Maybe I'm projecting my own results here, but if 10 is your worst day I think that's not bad - that's what my doctor told me. Under 5 is great, under 10 is success with opportunity for improvement. Your untreated is 96, I'm not sure it's fair to compare your results to someone who's untreated is 15. You're getting good numbers and you're feeling well again, that's success to me.

No reason to compare yourself to me either, but check out this home-made chart. I consider a 15 or 20 to be a bad day, but I focus on the weekly and monthly averages.
Image

The Latinist wrote:
I think if your AHI were 3 you'd be on a Quixotic quest for the unreachable 2.
Wow, way to judge.
Sorry, didn't mean it that way. Sometimes I see myself treating these charts as some kind of interactive video game that I'm trying to beat and no matter how well I do I want to get one better.

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Re: 3-Month Update and Request for Advice

Post by Day_Dreamer » Wed Jul 23, 2014 10:59 am

palerider wrote:you might also experiment with epr changes, and see how that effects you, I've seen some people say their centrals go up with higher epr, though 1 isn't much.

it's also lowering your epap which may result in higher obstructives.
X2 on the EPR

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Re: 3-Month Update and Request for Advice

Post by robysue » Wed Jul 23, 2014 11:00 am

The Latinist,

What I notice in your data are the following:

Long term overview data
  • A total AHI that is above 5 a lot of the time, but ...
    • The CAI part of the AHI is what's pushing you over the AHI > 5 level on a lot of the recent days, and
    • The CAI seems to be the largest component of the AHI on a lot of days since the pressure increase, and
    • The OAI seems to have come down (possibly significantly) since the pressure increase
  • The average pressure level is (and has been) around 13-14 cm on both sides of the pressure increase
  • The 95% pressure level was consistently AT your max before the pressure increase and it's now just a bit below the max setting.
  • The long term leak data is missing
Detailed daily data
  • The leaks are well controlled on these two nights
  • The day with the higher AHI (AHI = 7.5) has a relatively large number of CAs:
    • The CAI that day is 3.85 (over half the total AHI)
    • There are three nasty clusters of CAs, two of which appear to happen when the pressure is AT or NEAR the max setting of 16cm
    • The first cluster of CAs also has a large number of OAs being scored at the same time, which raises the question of whether some of those OAs are mis-scored, and may actually be central instead of obstructive.
  • The day with the lower AHI (AHI = 5.51) appears to have some sleep/wake/junk breathing with several events scored after 9:30AM, when it looks as though you were probably awake or lightly dozing. Those events are probably not real in the sense of events scored on an in-lab PSG.
  • It would be useful to know whether you remember any restlessness on either or both of these nights. In particular, on both days, the 7:00-7:30 time frame has a lot going on, but if you were dozing lightly, that may just be sleep/wake/junk breathing patterns being mis-scored.
In light of all that, here's my opinion about what (if anything) you may need to do to further tweak your settings:

1) I would look at the median pressure on the detailed data instead of the weighted average pressure. My guess is that your median pressure is also up around 13 or 14. The median pressure is easier to understand than the average pressure. If your median pressure is 13.5, that means that the pressure is AT or BELOW 13.5 for 50% of the night and it is also AT or ABOVE 13.5 for 50% of the night.

2) With the current minimum pressure of 12 cm AND the tendency of the CAs to pop up on some nights, I'd be reluctant to increase the minimum pressure without the advice of a sleep doc.

3) Given that the number of OAs went down after the pressure increase, but that the number of CAs seems to have gone up, I'd consider lowering the max pressure just a smidgeon, but keeping the min pressure at 12. In other words, it's worth gathering a week or two of data with the narrow APAP pressure range of 12-14 or 12-15. If the OAs stay under control and the CAs go down, you'll have your solution. If the number of OAs goes up and the number of CAs does not go down, you'll know that you really do need to involve your sleep doc in figuring out a sweet spot to balance out controlling the OAs without triggering an excessive number of CAs.

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Re: 3-Month Update and Request for Advice

Post by dkhinz » Wed Jul 23, 2014 2:32 pm

I had some issues like this when I first started but when I went back to my sleep doctor for advice, not another titration, I wound up connecting with a very savy tech. Although I already knew how to program my machine, he showed me how and had me gradually tweak my way over a few weeks to a setting that has worked for me ever since. I really appreciated being able to adjust my own machine gradually rather than have to go back for every change. I keep in touch with him regarding my progress.

I'm new at this myself having just over 6 months but it did take a lot during the first three months to get everything working together and finding the right mask. Now life is good!

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Re: 3-Month Update and Request for Advice

Post by igdoc » Wed Jul 23, 2014 2:41 pm

Agree with Robysue's excellent analysis (as always). There are clusters of central events here which are likely to represent central periodic breathing. If you could zoom in on the flow rate graph of Monday 21st between 3.35 and 3.50 we could be more certain.

I too would recommend lowering your maximum pressure slightly and would suggest reducing to 15 cm H2O. Try this for a few days and then I would suggest lowering your EPR setting from 2 to 1 or preferably 0 if it is not too uncomfortable for you. This can reduce periodic breathing by limiting the hyperventilation phase of the carbon dioxide overshoot/undershoot cycle (sorry to borrow Robysue's words).
Ian

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The Latinist
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Re: 3-Month Update and Request for Advice

Post by The Latinist » Wed Jul 23, 2014 4:19 pm

robysue wrote:[*]The long term leak data is missing[/list]
No, it's not. It's all there, it's just too low for you to make out. Since I switched to the Airfit P10, my average 95% leak rate has been 0.46 L/min.
In particular, on both days, the 7:00-7:30 time frame has a lot going on, but if you were dozing lightly, that may just be sleep/wake/junk breathing patterns being mis-scored.
My wife gets between 7:00 and 7:15 and is getting ready for work. It is entirely likely that I am having arousals during that time frame.
1) I would look at the median pressure on the detailed data instead of the weighted average pressure. My guess is that your median pressure is also up around 13 or 14. The median pressure is easier to understand than the average pressure. If your median pressure is 13.5, that means that the pressure is AT or BELOW 13.5 for 50% of the night and it is also AT or ABOVE 13.5 for 50% of the night.
My median pressure at my current setting is 13.81.
2) With the current minimum pressure of 12 cm AND the tendency of the CAs to pop up on some nights, I'd be reluctant to increase the minimum pressure without the advice of a sleep doc.
Fortunately, I have an appointment with my sleep doc tomorrow. Still, I don't think an increase in maximum pressure is what I need. I suspect that an increase in minimum is what I actually need, actually. Do you think turning of EPR might help?
3) Given that the number of OAs went down after the pressure increase, but that the number of CAs seems to have gone up, I'd consider lowering the max pressure just a smidgeon, but keeping the min pressure at 12. In other words, it's worth gathering a week or two of data with the narrow APAP pressure range of 12-14 or 12-15. If the OAs stay under control and the CAs go down, you'll have your solution. If the number of OAs goes up and the number of CAs does not go down, you'll know that you really do need to involve your sleep doc in figuring out a sweet spot to balance out controlling the OAs without triggering an excessive number of CAs.
This seems like good advice. I will talk to my sleep doc about it tomorrow. Would it be better to decrease slowly -- say in 0.2 cm increments -- giving it time to stabilize between each change?
igdoc wrote:Agree with Robysue's excellent analysis (as always). There are clusters of central events here which are likely to represent central periodic breathing. If you could zoom in on the flow rate graph of Monday 21st between 3.35 and 3.50 we could be more certain.
Image

If you'd like a more detailed zoom of any section, please let me know. I would note that this is not the best example of periodic breathing in my dataset -- I have some that almost look like classic cheyne-stokes respiration, though never for too long.
Try this for a few days and then I would suggest lowering your EPR setting from 2 to 1 or preferably 0 if it is not too uncomfortable for you.
EPR is at 1 and has been for quite some time. There is an issue with the beta of SleepyHead that causes it to display EPR:2 no matter what the actual level is. The EPR_LEVEL:1 figure is the correct one. That said, I have been considering lowering the EPR, and will suggest it to my doctor tomorrow. Fortunately, I have very little problem tolerating pretty much any pressure that's been thrown at me so far; I don't anticipate a problem with EPR=0.

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Re: 3-Month Update and Request for Advice

Post by The Latinist » Thu Jul 24, 2014 12:22 pm

Had my appointment today. I'm starting with a lowered maximum pressure tonight. I'll give it a week and see where I'm at before changing EPR. He suggested that it may turn out that I'd do better on a straight CPAP around 14, but since my obstructives are consistently below 5 and my oximetry was good, he doesn't want to make too many changes. I agree; we're really just tweaking, now.

I don't have another appointment for a year. Starting today I'm taking over my therapy. My question for you all is this:

How rapidly should I lower the maximum pressure?

The doctor already set it to 12-15, but I feel no obligation to leave it there. Would it be better to go in 0.5 cm increments? Even slower? I'm in this for the long haul (I'll be using this therapy the rest of my life, after all) and am willing to go as slowly as I need to get it just right.

Incidentally, my doc was not too keen on further reducing the EPR. Seemed to think it could negatively effect ventilation, and with my oximetry good at EPR=1, he didn't think it should be messed with. I'm still willing to give it a trial, but I want to adjust one thing at a time for control purposes.

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Re: 3-Month Update and Request for Advice

Post by robysue » Thu Jul 24, 2014 1:01 pm

The Latinist wrote:Had my appointment today. I'm starting with a lowered maximum pressure tonight. I'll give it a week and see where I'm at before changing EPR. He suggested that it may turn out that I'd do better on a straight CPAP around 14, but since my obstructives are consistently below 5 and my oximetry was good, he doesn't want to make too many changes. I agree; we're really just tweaking, now.

I don't have another appointment for a year. Starting today I'm taking over my therapy. My question for you all is this:

How rapidly should I lower the maximum pressure?

The doctor already set it to 12-15, but I feel no obligation to leave it there. Would it be better to go in 0.5 cm increments? Even slower? I'm in this for the long haul (I'll be using this therapy the rest of my life, after all) and am willing to go as slowly as I need to get it just right.
For now, I'd stick with the doc's advice of trying 12-15 cm. Keep it there for a week and then re-evaluate the situation in light of what the data shows. If you're still getting a lot of CAs and not many OAs scored at 12-15, then lower the max pressure by another 0.5 cm and leave it there for a week, and re-evaluate based on the data.
Incidentally, my doc was not too keen on further reducing the EPR. Seemed to think it could negatively effect ventilation, and with my oximetry good at EPR=1, he didn't think it should be messed with. I'm still willing to give it a trial, but I want to adjust one thing at a time for control purposes.
Personally I agree with the doc. I see no real adavantage of playing around with EPR as long as you are comfortable with the current setting.

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