[CPAP] Still feeling bad - What does data show?

[StillHoping]

Thank you to any experts who can suggest steps to move forward. Still feeling bad nearly every day. Either must take an afternoon nap (I'm only about 50 years old), or I feel groggy. Sometimes I wake with a headache. On the bad days I "see" many dreams (must be half-awake), which also corresponds to worse AHI numbers.

June 2015: Sleep doctor fitted me with a home-sleep study. AHI was about 15. I first addressed my (infrequent, soft and very limited) snoring and applied "good sleep habits". Using smartphone app, I was able to listen to many minutes (over many days) of the marked-by-app snoring periods to discern any "gasps for breath" (what I heard before my wife was treated for OSA). I never heard any. I did however hear that during the hour or so of soft and scattered snoring each night, my snoring seemed to just stop for about a minute or more, then gently resume, and it would do so a few times.

Sept. 2015: I was put on APAP, each month the pressure range was adjusted. I tried hard for many weeks but did not feel better but was told it takes time, and that after I was put on CPAP I would feel better. AHI according to the machine was in 5-10 range.

End of Dec. 2015: I was put on my new CPAP machine, at 9.2 cmH2O, since the tech said that is what the APAP determined was needed (something about "95%"). Each month I've gone back in for adjustment. Tech gradually increased pressure to reduce AHI and help me feel better. After 3 months the pressure has gone from 9.2 to 9.8 to 10.2. AHI had gone down, but has been steady now at about 3-5 AHI for two months now. They tried me at 10.4 for a few days recently but it was uncomfortable, mask pushed away, AHI went up, so went back to 10.2.

Folder of Data Files:
prefix: https://
snip (remove this line and prefix the below line with the above line for the link)
Suffix: drive.google.com/open?id=0B_JlYd4NiMPkMWJvS0F1T09OeEE

Overview1,2.PNG - Overview data for three weeks
Statistics.PNG - CPAP Stats
March 5th, 23rd, 26th.PNG - Representative "Daily" data.

(With the restrictions of 200 KB for attachments as a new user - images and links not allowed - each screenshot I spent a few hours creating was about 200KB - so there's no way to share the data unless I first post 8 times)

The March 26th data (last night) was an experiment to see if AHI (and grogginess) improved when EPR was set to 1, since a forum post indicated that it could reduce apneas in some people (try it to know / people dependent!). Fascinating result was that the OA and H apneas greatly reduced! But the Centrals got worse. Overall AHI was 6 (need nap today). The increased centrals makes sense to me in the sense that if a BiPAP was like an EPR of 5 or 6, ... need an expert to explain that it's not the same (timing and all), but maybe BiPAP could help? I've reset EPR back to 3 now.

Other ideas: Should I try to eliminate supine sleep with the common tricks? Sleep study indicated many more apneas supine. I will be trying a nasal mask in a few weeks. Maybe my current mask is not holding the pressure but don't know how to tell for sure from the graphs. Nasal pillows didn't work (way last fall). Do I need my heart checked (CSR on March5th)?

Note: Got a new Amara View mask on Tue. March 22nd. AHI dropped to 1.7 that night (but still felt bad next day). I think the mask was too tight because it crunched up around my nose. Eased the mask fit but AHI got worse the following night (that's the Mar. 23rd data). The reason for the new mask is the claim by the techs that it "degrades" and I notice a reduced AHI with a new mask (which I can get once a month, I'll post another thread later for this issue).

Interestingly, the imported data gives erroneously small AHI values (disagree with what was observed every day) for the data that is older than what the (detailed) data SleepyHead and/or ResMed retains / uploads (e.g. older than a few weeks). That is, the summary data AHI values are reduced for some strange reason to lower values for the older data.

More Info: Use chinstrap; 5 min. ramp (start 4.0 cmH2O); EPR level 3.

[woozie38]

Thank you to any experts who can suggest steps to move forward. Still feeling bad nearly every day. Either must take an afternoon nap (I'm only about 50 years old), or I feel groggy. Sometimes I wake with a headache. On the bad days I "see" many dreams (must be half-awake), which also corresponds to worse AHI numbers.

Sept. 2015: I was put on APAP, each month the pressure range was adjusted. I tried hard for many weeks but did not feel better but was told it takes time, and that after I was put on CPAP I would feel better. AHI according to the machine was in 5-10 range.

End of Dec. 2015: I was put on my new CPAP machine, at 9.2 cmH2O, since the tech said that is what the APAP determined was needed (something about "95%"). Each month I've gone back in for adjustment. Tech gradually increased pressure to reduce AHI and help me feel better. After 3 months the pressure has gone from 9.2 to 9.8 to 10.2. AHI had gone down, but has been steady now at about 3-5 AHI for two months now. They tried me at 10.4 for a few days recently but it was uncomfortable, mask pushed away, AHI went up, so went back to 10.2.
The March 26th data (last night) was an experiment to see if AHI (and grogginess) improved when EPR was set to 1, since a forum post indicated that it could reduce apneas in some people (try it to know / people dependent!). Fascinating result was that the OA and H apneas greatly reduced! But the Centrals got worse. Overall AHI was 6 (need nap today). The increased centrals makes sense to me in the sense that if a BiPAP was like an EPR of 5 or 6, ... need an expert to explain that it's not the same (timing and all), but maybe BiPAP could help? I've reset EPR back to 3 now.

Other ideas: Should I try to eliminate supine sleep with the common tricks? Sleep study indicated many more apneas supine. I will be trying a nasal mask in a few weeks. Maybe my current mask is not holding the pressure but don't know how to tell for sure from the graphs. Nasal pillows didn't work (way last fall). Do I need my heart checked (CSR on March5th)?

Note: Got a new Amara View mask on Tue. March 22nd. AHI dropped to 1.7 that night (but still felt bad next day). I think the mask was too tight because it crunched up around my nose. Eased the mask fit but AHI got worse the following night (that's the Mar. 23rd data). The reason for the new mask is the claim by the techs that it "degrades" and I notice a reduced AHI with a new mask (which I can get once a month, I'll post another thread later for this issue).

Interestingly, the imported data gives erroneously small AHI values (disagree with what was observed every day) for the data that is older than what the (detailed) data SleepyHead and/or ResMed retains / uploads (e.g. older than a few weeks). That is, the summary data AHI values are reduced for some strange reason to lower values for the older data.

More Info: Use chinstrap; 5 min. ramp (start 4.0 cmH2O); EPR level 3.

Hi StillHoping,

Your SH charts are somewhat confusing since you have an AHI doctors would describe as "low" and most of your events are either CA or OA. There appears to be very little FL or Hypopnea events which is puzzling since FL & Hyp. precedes OA in most cases.
However, IMHO, AHI is not a good indication of the effectiveness of your treatment as most docs seem to think, it's the way you feel next day that really tells the story. My AHI is consistently below 5 yet I feel crook almost every day.
First thing you must do is limit what data SH reads from your SD card from "file" -> "preferences" -> "import" -> Do not import data older than... You need to set this limit before you do any more data collecting or analysis.
Next, if possible dispense with the ramp feature - a setting of 4 supplies insufficient air. It's generally thought that a high pressure setting can induce CA & since your charts show a high percentage of CA's I'm wondering why your tech took you off APAP. APAP is usually far & away the best delivery method for treating SDB.
Anyway, I suggest you start again with new data on a new or re-formatted card & if the charts still show the same data, then consider returning to APAP with setting of say 9 to 15 & see how that goes. Yes, you need to eliminate supine sleeping because it is known to cause all kinds of breathing difficulties.
I personally am not in favor of nasal masks as they tend allow therapy air pressure to force open the lips with the escaping air defeating your treatment, causing dry mouth and accelerated tooth decay. In my case, training the tongue, & using a chin strap didn't work.
Stick with it, you may require a more sophisticated machine if your SH results remain the same ie; mainly CA & OA. Good luck

[palerider]

I'd recommend turning DOWN you EPR setting. or turning it off.

[PoolQ]

Well it looks like you are going to get three different answers:
Disclaimer is of course none of us are doctors or experts, some with more use than most
Numbers: IMHO do not look bad and I would suggest that something else is making you not sleep well
Leaks: do not look that bad
If you are starting at 4 and using ramp. IMHO 4 is too low and you need to find your comfort level. Mine is 5.6-5.8. If you like ramp then use it. I do and am doing fine.

Humidity? Temperature? Auto? manual? Are you sure you really like humidity? Or are you using enough humidity? Have you found the Amara View easier to sleep with than the nasal mask? Have you tried the different EPR settings and kept track of the results? If pressure changes are disturbing you then by all means try decreasing the EPR setting.

[trish6hundred]

Hi StillHoping,
WELCOME! to the forum.!
Much success to you in getting your CPAP therapy fine-tuned to meet your needs and hang in there for more suggestions.

[StillHoping]

Thank you all for your replies, much appreciated.

To the points made:
- When my AHI < 3, I do feel better most of those times. So perhaps the amount and type of the apneas, the timing of their occurrence, or my response to them, or other details, is impacting the degree of my restfulness.
- I will look into limiting the data SH reads in.
- I will ask the techs about the APAP, or research more when I have time. The APAP was supposed to algorithmically find the optimal pressure, which they said indicated, after 3 months, 9.2 cmH2O for the final CPAP setting. I'll try hard to get new answers on that.
- The info on the nasal masks is excellent. The scenario mentioned seems likely. I'll have to reconsider.
- The first experiment with lower EPR gave me a lot of CAs, much higher AHI, and a quite poor day. But I'll research it some more. And yes any changes need to be small, controlled, and over a good number of days for a good study.
- Thank you for the leak assurance
- Humidity is set to 3, 81 degreesF, Auto - I enjoy the amount I've settled on after experimenting for long time.
- I haven't tried a nasal mask yet.

I really don't follow how the starting ramp pressure affects anything here.
- The ramp is a process by which the machine gradually increases the pressure for 5 minutes, only at the time the machine is started (which includes the beginning of sleep, as well as the few awakenings and restarts during the night for bathroom occurrences - yeah another story on that, limit liquids, etc).
- I've never seen a correlation between the completion of the ramp time and immediate apneas
- I'm awake during the ramp time (and usually 5 - 10 min's longer)
- The amount of time during the ramp that I'm at a pressure of 4 is figuratively [5 min * 60sec/min / (10.2-4)] ~= 48 seconds, assuming a segmented ramp-up. Or if linear ramp then it's not even that, but gradually increases over time.
- The sleep techs stated the ramp time or starting pressure won't affect the CPAP treatment
- The purpose of the lower starting pressure is just so that when the machine starts there's time to do any small adjustments of the mask around my face without being under the full pressure.
Are you suggesting the 5 min. ramp "shapes" the pattern of my sleep? Or that a couple min's of low pressure while I'm awake is going to affect my sleep apneas many hours later?

Thanks again!

[OpalRose]

There's nothing wrong with using ramp, but you are staring ramp at 4 and ramping to over 10 in 5 minutes. Most feel air starved at a pressure of 4. It may be better to start ramp at 6 so it's not so far from your set pressure.

As far as EPR, some have reported that when set at 3, they saw an increase in Clear Airways.
Try turning it down to 2 and eventually 1.

Good luck with your therapy. Make your changes slowly, and document how you feel. That's most important.

[StillHoping]

Thanks. I've made the ramp starting pressure adjustment.

I'm seeing the sleep doctor soon about still feeling poorly. My AHI is now higher, 5 - 10 in the last week. A few examples:

Day AHI CA/OA/H
Fri. 5.5 3.1/1.0/1.5
Sat. 6.1 3.4/1.5/1.2
Sun. 7.5 5.1/1.8/0.7

I also had a day in the last week with 2.3% CSR which on the SH chart looked like 30 min's or so (highlighted) at 3am.

I will be asking about changing machines since it was suggested here to use APAP.

What are the basic differences between these machines (with some technical info)? And which machine type might be the right option (or best next step) to help my apneas? By "my apneas" I mean that I seem to have more CA's (mixed). I've noticed for a long time that even during the day, I tend to rest my breathing. For example the sleep study showed a lot of apneas while I had the machine on and I was awake.

1. PR REMstar Pro C-Flex+ System One. This is the machine I was started with last fall in "Auto-Trial" mode, the purpose they clearly told me was to ascertain the optimal pressure to use when I was switched to CPAP (which occurred after 3 mo's). I thought they called it "APAP" - for auto-adjusting - but apparently it's not the same as 3) below. They set the machine to vary the pressure over a range of say 6 - 12 (cmH2O). After 3 mo's they said the result was a recommended CPAP pressure of 9.5 (and they said the constant pressure would help more).
2. "BiPAP" - At the last visit the tech suggested this type of machine would help CA's. So I'll be asking about this.
3. APAP - For example the AirSense 10 AutoSet (as I've read).
4. ASV

I've read a lot of articles about these machine types. I have the impression that 2) and 3) would help CA. 4) might be more for CSR. There may be risks? I've also learned that insurance may only want to move to APAP if CPAP isn't working. Maybe they'll keep me on the CPAP.

Thanks

[tmoody]

I'm about the least knowledgeable person around here, so keep that in mind as you read on.

Your AHI is predominantly centrals, by a pretty wide margin. The standard treatment for CAs is ASV, not BiPAP. I used CPAP for years, and CAs eventually emerged. I have no data so it's anybody's guess just when that happened. Anyway, the CAs weren't diagnosed until APAP therapy failed to get my AHI much below 15, most of the time. The doc scrapped APAP and moved me straight to ASV, which I've been on now for a couple of weeks. I'm still getting used to it.

The ASV, in addition to maintaining pressure to keep your airway open (preventing OAs) watches to see if you wait too long before inhaling, which is the definition of a CA. If you do, it blows a fairly strong gust of air to trigger an inhalation and get you back into a regular breathing rhythm. It's the only one of the machines that does that specific thing to address the CA problem.

It's possible that some people get relief from CAs with BiPAP machines; I don't have any knowledge of that. But the ASV is designed specifically for the purpose of treating CAs, and since your AHI is mostly CAs, ASV seems to make sense.

[PoolQ]

It is good to see you so active and taking charge of your own treatment. Lets see what I can add and if I can remember everything.
Remember that with CPAP there are two different issues: treatment and comfort.
Treatment:
Yes you have quite a few centrals. What was your sleep test results pretreatment? was it about the same number of centrals? CPAP therapy can induce centrals.
the reason for treatment: stop O2 desaturation and support restful sleep. So if you are sleeping and waking up rested and your O2 levels are fine then you get 5 gold stars. Numbers don't matter all that much unless they are interfering with your sleeping and O2 levels. IMHO

My guess is that your O2 levels are now fine, but you are not getting restful sleep and this is not caused by low O2 levels.

The only machine that can treat centrals is an ASV type. If your centrals are CPAP induced then you do not need an ASV to treat them. That being said IF to treat your OA's and hypopneas you are creating so many centrals that this in itself causes problems, then this is complex sleep apnea and then an ASV machine may be required to treat the complex apnea. yep lots of what if's. I personally have about the same ration of centrals that you have and my Doctor is not concerned and strongly encourages me to not be concerned also. I am working on it.

I am finally after almost a year starting to just freeking sleep at night, heh it's working and progress is finally being made.

Ramp and starting pressure: if it is not bothering you then don't worry about it. We ask about it because many people feel "starved" for air at 4, you are not required to feel starved at 4

BiPAP is what I use and is typically for people that have a problem exhaling into pressure. EPR of 3 was not enough for me and my BiPAP is set to give me relief of 4 and that works just fine. one silly cm makes all the difference for me.

Most of this is that we have no language for most things regarding CPAP, this is all new. We have to really get in touch with what exactly is happening and not just say "I rip my mask off during the night" we need to be able to figure out WHY we are ripping the mask off. All of this is new, you now have a personal breathing system attached to your nose and mouth with lots of settings that are not automatic.

CPAP vs APAP. some people are sensitive to rapid pressure changes, so CPAP does not have any changes. If your centrals are CPAP generated then this should/may help. Oh and you should know that any of these machines can be set to any mode available to a lower level machine, ASV can do APAP, BiLevel, CPAP. CPAP and APAP machines are pretty close in price. BiLevel is about double the cost of APAP. ASV ($5,000+)is more than 2x the cost of APAP. They don't just give everyone an ASV machine, you really have to need it.

I would go for a BiLevel (Resmed VPAP) machine and then you can pretty much do what you need to.

Event when awake are referred to as sleep/wake junk. we do strange things during that time without SA being involved.

Doctor work best when you lead them with information. "I am feeling like____ and I think it's caused by ____." like I feel like I can't breathe out, I am fighting the machine, would BiLevel help this so I can sleep better. Now reality is that most insurance does not care how well you sleep, what they do care about is O2 levels and if you can tolerate the treatment. SO if you can't sleep with the machine, you will not tolerate using the machine, and your O2 levels will be a problem. This will justify a higher level machine.



No Idea if I addressed all your questions, but I am burned out