Looking for advice – very high AHI

[khauser]

This has been fascinating to follow. I have one or two thoughts to interject.

Most importantly I wanted to "clue" sparky in to why people brought up GERD. It's quite common for GERD to cause chronic coughing without any other noticed effects. However I had the impression that this cough was a recent event and that perhaps you just need to give your body time to get rid of it. If the cough is less than 3 months old I wouldn't race to GERD as a cause.

I found the talk about medications that depress breathing very interesting, because I have a chronic pain condition that is treated with strong (as in Class II) narcotics. The chronic pain issue came before the diagnosis of sleep apnea (I am pretty sure I spent a lot of time sleeping poorly before I got educated and tested), so I don't know what my results would have been before onset of narcotics, but I can report that, though I require a strong pressure (maybe to combat the strong narcotics), my overall numbers are pretty good. AHI hover at or below 1 and I have very few CA's and other events. It might well be that without xPAP the narcotics would have caused more trouble with breathing ... it almost makes me thing that long term chronic pain patients should be evaluated at a sleep clinic simply because the medicine could be causing problems.

Thanks for sharing this! I certainly hope you get it resolved soon, and please keep us informed. Along with (hopefully) helping you, this is also educating us (or at least me!)

[sparky2]

I do know of one other person who had a marked reduction in centrals when we ended up going higher with the pressure trying to zap the obstructives. Horrible reports at 10 to 12 cm (both with centrals and obstructives) and ended up with 15 cm pressure and nice AHI in the 1.0 to 2.0 range. Best we could think of was that the obstructives were causing mini arousals and the centrals weren't "real" but instead maybe an arousal central or sleep stage transition central.

I really hope I follow the same path. I can’t imagine an AHI less than two. I will stick with this for now, but you could be correct about needing something other than what the current treatment plan is. I was back up to 50 last night. Hypopnea was 4, OA was 17, and CA was 29. An interesting thing is, however, that I had the most CA events when my pressure was relatively low; 12 or less. There were a couple of periods of 30 – 40 minutes when I had almost no CAs and they were both at the maximum pressure of 14 cmH2O. So there is hope that I will be another case of higher being better for attaching centrals, although I do not understand how I could be having OA events at 14 cmH2O.

I woke up after about 3.5 hours due to not being used to the high pressure. I had to just lay there going in and out of sleep to get to over 4 hours. I have got to learn to put the thing on before I nod off because just when I reached the 4 hours, it was time to get up.

Most importantly I wanted to "clue" sparky in to why people brought up GERD. It's quite common for GERD to cause chronic coughing without any other noticed effects. However I had the impression that this cough was a recent event and that perhaps you just need to give your body time to get rid of it. If the cough is less than 3 months old I wouldn't race to GERD as a cause.

I had the cough for almost 4 weeks exactly and then it abruptly stopped. I have not come close to reaching 3 months, but I did have the same kind of cough about 9 months ago for several weeks as well.

[Pugsy]

although I do not understand how I could be having OA events at 14 cmH2O.

You simply happen to need a bit more pressure than the setting maximum will go to.
That actually happens fairly often.
Example would be maybe supine sleeping or REM stage sleep...in both instances it is common for there to be a few events pop up that are just a little more difficult to prevent and more pressure is needed.
I happen to have it happen in REM stage sleep. I can go merrily along at minimum pressure for a couple of hours and then out of the blue I will see my pressure go up to maybe 18 or 19...no events got flagged because the machine increased the pressure in time to prevent them.
Also...sometimes we just simply can't prevent every single apnea event no matter what pressure is use.

How would you rate your sleep last night in terms of awakenings? Very many?

Guess we have to give the doctor's idea a good try though.
But in the 4 years I have been doing this...Only 1 person...the odds are against it. Not impossible though.
Was your Obstructive index last night 17 or was that the total over the whole night?

[sparky2]

You simply happen to need a bit more pressure than the setting maximum will go to.
That actually happens fairly often.
Example would be maybe supine sleeping or REM stage sleep...in both instances it is common for there to be a few events pop up that are just a little more difficult to prevent and more pressure is needed.
I happen to have it happen in REM stage sleep. I can go merrily along at minimum pressure for a couple of hours and then out of the blue I will see my pressure go up to maybe 18 or 19...no events got flagged because the machine increased the pressure in time to prevent them.
Also...sometimes we just simply can't prevent every single apnea event no matter what pressure is use.

How would you rate your sleep last night in terms of awakenings? Very many?

Guess we have to give the doctor's idea a good try though.
But in the 4 years I have been doing this...Only 1 person...the odds are against it. Not impossible though.
Was your Obstructive index last night 17 or was that the total over the whole night?

Last night I would rate the actual sleep as average. I was able to stay asleep for 3.5 hours with the machine on, but then was mostly awake for another 40 minutes or so. I inadvertently dozed off for a few hours before putting the mask on. I have been tired most of the day.

Those numbers were all indices. The AHI of 50 included an average of 17 OA events per hour (is that called OAI?). Between the hours of 3:00 and 4:00 I had 32 OA events. I did not have that many when my max pressure was 9. For two consecutive nights last week when the max pressure was 9 cmH2O I had OAIs of 2.2, and 3.0. That is what I do not understand; going from around 3 OA events per hour at 9 cmH2O to averaging 17 per hour at 14 cmH2O (with one hour at 32). I had expected that they would almost go away at 14. But remember, it is hard for me to stress enough how little expertise I have in this subject .

[Pugsy]

Okay, just want to make sure that was an OA hourly average.

If you had many, many more OAs with the higher pressures maybe the machine flagged some awake breathing irregularities.
That may be happening with the centrals too... couple of big maybes or another maybe is that the machine is mistaking some centrals for OAs. All this meaning you didn't sleep so great and maybe had a lot of awake time on the machine and thus lots of sleep wake junk gets reported.

I had expected that they would almost go away at 14

and yes, I also would have expected the OAs to go away with a pressure of 14. That's what logic would tell us. Might be unchanged but for sure not increase.
That's why I asked for clarification of the 17 OA number being hourly or over night total....just in case I was misunderstanding what I thought you meant.

I just find it hard to believe that the titration study was so far off. While I myself happen to be someone whose titration study wasn't spot on...it wasn't that far off either. Especially when it comes to your centrals...of course they have the advantage of the EEG data to confirm if you were asleep or not...but you must have had some that were real or there wouldn't have been the mention that the centrals sort of went away with the higher pressure.

If you didn't sleep soundly...that does lend us the possibility that you had some or a lot of awake/semi awake junk clutter get reported and totally messes up any possible interpretation of the data.

We have no choice but to allow their idea to be given a chance. Hey, they do get it right sometimes.
So some "maybes" to keep on the back burner.
Maybe last night was just a bad night because you didn't sleep well with the new pressures...blame it on adjustment to higher pressure.
Maybe last night larger APAP range (compared to the 8 min and 9 max) again with the varying pressures caused some low level arousals from sleep and you got a lot sleep wake junk get flagged. Some people are highly sensitive to the least little change in pressure. You might be one of them and a really tight range (like 1 cm) or even cpap mode might be a better choice.
Maybe you need more than 14 cm...to stop the majority of the arousals (if that is what we are seeing here)...like my friend (who so far has been the only one) who had horrible reports (especially centrals) at pressures up to 12 but got totally cleared up at 15 cm (BTW the RX pressure from the titration study).
Maybe you just need more time..because sometimes centrals do go away on their own.
Maybe you need a different machine....and this is the maybe I am thinking in my mind is the strongest. Though I have been wrong before. At least once with the person that I mentioned. We thought for sure she was heading down the bilevel road and a good chance for ASV machine road.

Anyhow you have to jump through the hoops even if you do end up needing a different machine. You have your doctor aware of what is going on and the nurse...so you aren't without support. Of course we on the forum are here to toss out ideas and our thoughts but your doctor and the nurse are the first responders... I can't in good conscious totally disregard what they say. I simply don't know for sure what is going on with you.

Either there's a lot of sleep wake junk going on or maybe you have complex sleep apnea.

So....you need to try to get the best possible sleep that you can so you can eliminate or greatly reduce the possibility of the ugliness being simply sleep wake junk.

[sparky2]

I am totally astounded by last night’s data. It says AHI = 4.7. The numbers are a bit skewed because of a big leak I had, but the first hour I had 1 central, 2 OA, and 2 Hypopnea. The rest of the hour looks perfect. The pressure was down around 10 during the best part. There is then over an hour of leak followed by an hour and a half where I had about 22 events. The leak time, which did not report any events was averaged in by SleepyHead to give the AHI of 4.7. The PR System One reports an AHI of 7.5. In any case I am a lot happier.

I really have no memory of my sleep time – whether good or bad. I wish I could tell you more about it, but it sounds like your sleep, wake, junk theory may be correct. In any case, it may be starting to look like you will be able to say you have heard of two people who have had their CAs go down with higher pressure. The odd thing from last night to me is that the centrals were the lowest while I was at my lowest pressure.

Perhaps the large leak is from trying to sleep on my side which push the mask's pillows away from my nose. I did not wake with any symptoms of having my mouth open, so I do not think it was that. Perhaps I should think about turning on the leak alarm function if this continues.

Here is a snapshot of the charts.

[Pugsy]

During the middle of the night when the leak was very large there is a break in the flow graph. This is because the machine couldn't adequately sense what is going on and the flow rate didn't get written to the SD card.
Your AHI might have been a little higher if the machine had been able to flag the events that may have happened for that hour around 3 AM.

That big of a leak pretty much has to be the nasal pillow became dislodged.
So this is one of those situations where we can't rely totally on the AHI because the machine may have missed scoring a few events....of course it might not have missed many either...that first hour was a really great hour and the AHI graph for 3 to 4 AM shows only 5 events of some sort. Then the next couple of hours are sort of so so...better than some of your other reports.

Did the events graph (above the flow graph) show any events being flagged during that time frame?

Look at the AHI graph around 3 to 4 AM hour...it goes to 5. I think you had some events during that hour when the leak was massive.
With leaks that bad we really can't put much faith in what we see or don't see during the time frame of large leak.

Oh, the leak alarm thing...the machine beeps but not very loud. It may or may not wake you up but doesn't hurt to turn it on just in case.

[sparky2]

Did the events graph (above the flow graph) show any events being flagged during that time frame?

None. Just white space.

Look at the AHI graph around 3 to 4 AM hour...it goes to 5. I think you had some events during that hour when the leak was massive.

I looked at that as well. I put my programmers hat on and thought about what I would do with the AHI graph during a big leak and I decided that "freezing" it at the current value during the leek would be reasonable enough, so I thought that was what SH was doing. The AHI does finally come down near the end of the leak and I assumed that it was in response to the little data blip at around 3:45 where it may have thought it saw some reasonable readings and so recalculated the average - and then froze again due to the "good data" going away. It looks as though this may have happened again about 10 minutes later. Just a theory.

Well, I am off. I will give it another shot tonight. As you said above, "We have no choice but to allow their idea to be given a chance. Hey, they do get it right sometimes."

sparky2

[sparky2]

Wednesday night I had an AHI of 12.8. The first 4 hours I had an AHI of about 7, and the last 2 hours it was 24. I do remember having restless sleep for the last hour or so, but perhaps it was longer. My pressure during the “good” time was between 10 and 11 and only went above 11 for the last hour and a half.


Thursday night was much the same. My average AHI for the first 5 hours was about 10 and for the last hour it was about 45. I cannot easily see how many events for each of the time periods as I left the SD card in my computer . The thing that was most different between these nights was that my pressure went up to 14 during the “good” time on Thursday. It looks as though the machine was behaving the way it should by changing pressure up in response to events and then drifting back down. An interesting thing is that I did not have many CA events while at the low end of my pressure range (10) nor at the high end (14), but did have when the pressure was between 11.5 and 13 or so.

I am getting a bit discouraged in that I still have yet to have a significant period of time under 5.

[Wulfman...]

Wednesday night I had an AHI of 12.8. The first 4 hours I had an AHI of about 7, and the last 2 hours it was 24. I do remember having restless sleep for the last hour or so, but perhaps it was longer. My pressure during the “good” time was between 10 and 11 and only went above 11 for the last hour and a half.


Thursday night was much the same. My average AHI for the first 5 hours was about 10 and for the last hour it was about 45. I cannot easily see how many events for each of the time periods as I left the SD card in my computer . The thing that was most different between these nights was that my pressure went up to 14 during the “good” time on Thursday. It looks as though the machine was behaving the way it should by changing pressure up in response to events and then drifting back down. An interesting thing is that I did not have many CA events while at the low end of my pressure range (10) nor at the high end (14), but did have when the pressure was between 11.5 and 13 or so.

I am getting a bit discouraged in that I still have yet to have a significant period of time under 5.

Try setting your machine to CPAP mode at a pressure of 10 cm. for 3 or 4 nights and post your results.


Den

.

[sparky2]

Try setting your machine to CPAP mode at a pressure of 10 cm. for 3 or 4 nights and post your results.

I made a deal with my sleep LPN that I would not fiddle with the machine if I did not have to do a sleep study. After getting really bad results, I was told I had to take an overnight study anyway (I have had two a few years ago). Between the study and getting the results back, I asked for advice here and made an adjustment which improved things drastically. I had to do something during that week of waiting for the results instead of night after night of AHIs around 45.

After the week of waiting was up, I was given new settings and promised to stay with them for a couple of weeks unless my AHI jumped up drastically again. I have had pretty erratic results since then, but nothing too alarming - at least not a few nights in a row in the 40s and 50s as I was initially getting before the study. I go back on Valentines day and I expect that they will prescribe a different machine as my nightly average is 20 so far. The data is roughly trending down, but I am guessing that it will level out in the low teens. In any case I have committed to staying the course for a while before "taking maters in my own hands" again .

All of that being said, I see where you are coning from and it may be a good idea. Pugsy suggested almost the same thing, but included a small range of pressure so that I would get more data from the machine as I recall. So, if the results do not improve and I do not get any real help at this sleep doc, I may need try something like a very small range of 9.5 to 10 until I can find a better place to take my business.

[sparky2]

Sunday night I was back in the mid 40s with an AHI above 80 between 2:00 and 4:00. Is this somehow related to leaks or are leaks just an indication of restless sleep?




It has not been that bad for the several preceding nights. Wednesday night I had an AHI of 12.8. The first 4 hours I had an AHI of about 7, and the last 2 hours it was 24. I do remember having restless sleep for the last hour or so, but perhaps it was longer. My pressure during the “good” time was between 10 and 11 and only went above 11 for the last hour and a half.

Thursday night was much the same. My average AHI for the first 5 hours was about 10 and for the last hour it was about 45. I cannot easily see how many events for each of the time periods as I left the SD card in my computer. The thing that was most different between those nights was that my pressure went up to 14 during the “good” time. It looks as though it was responding to events the way it should. An interesting thing is that I did not have many CA events while at the low end of my pressure range (10) nor at the high end (14), but did have when the pressure was between 11.5 and 13 or so.

Friday night was my best ever with an AHI of around 8.8. The first couple of hours were almost event free! On Saturday I had an AHI of 16 with about equal parts of OA, CA, and hyp.

Sparky2

[Pugsy]

What an ugly night. Some of that total leak is related to the increase in pressure which of course increases the vent rate.
I don't think the leak caused the majority of that ugliness though. You were below 60 L/min for the most of the night and kissing larger leak territory only for short period of time...no where near the length of time the ugliness occurred.. I think it was just a horrible night in general. The fact that you have some good hours (like over the weekend) points to maybe some of this stuff might be related to extremely restless sleep where you are semi awake more than you might think.

[sparky2]

The fact that you have some good hours (like over the weekend) points to maybe some of this stuff might be related to extremely restless sleep where you are semi awake more than you might think.

Can anything be done for that?

[Pugsy]

I don't know...surely something can be done but we have to figure out what it is first.
Is it something unrelated to cpap? Is it the presence of the events themselves (the obstructives) that are causing mini arousals and restlessness? Heck, I don't even know if those centrals are real and from the pressure or just sleep/wake/junk. We just don't have enough data to tell for sure.
The centrals do appear to be worse with the increased pressure with only sporadic short lived times where they aren't in large numbers. How long before you go back to your medical care team?