AHI still too high

Well, last night I slept a fair amount, and I'm kind of functional today, but not like yesterday. My AHI went up quite a bit last night. Almost to 8, and that includes an hour and a half of running the machine while reading before sleep. Today I have 4 questions I hope someone can help with:

1. Why does the pressure go up if I'm not asleep yet, just lying in bed reading?
2. Why doesn't the pressure go up more when I am asleep, and my AHI has gone up to 15?
3. Is it just a blip of some sort, or did it record a real hypnopea event while I was awake and reading?
4. It records a lot of RERA while I'm awake and reading. Is this something to be concerned about? I looked up RERA in the Sleepyhead glossary, but I didn't understand the definition.

Thank you all for being here. No one else understands what I'm going through.

NightWatch23 wrote:Well, last night I slept a fair amount, and I'm kind of functional today, but not like yesterday. My AHI went up quite a bit last night. Almost to 8, and that includes an hour and a half of running the machine while reading before sleep. Today I have 4 questions I hope someone can help with:

1. Why does the pressure go up if I'm not asleep yet, just lying in bed reading?
2. Why doesn't the pressure go up more when I am asleep, and my AHI has gone up to 15?
3. Is it just a blip of some sort, or did it record a real hypnopea event while I was awake and reading?
4. It records a lot of RERA while I'm awake and reading. Is this something to be concerned about? I looked up RERA in the Sleepyhead glossary, but I didn't understand the definition.

Thank you all for being here. No one else understands what I'm going through.

I think you're going the wrong direction with your minimum pressure. I believe you should be increasing it and not lowering it.

The answer to your questions is that you don't breathe the same when you're awake or sleeping.
It doesn't take much if you're lying there awake to alter your breathing to show a flow limitation or hypopnea. Thinking about something besides breathing can do it. If you're going to lay there with your equipment running, concentrate on deliberate breathing. Light, shallow breathing can cause the machine to interpret those as flow limitations and increase pressures.

Den

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Any events flagged during known awake times have to be mentally removed from any of the therapy evaluation.
Awake breathing is much more irregular than asleep breathing and the machine doesn't have a clue if you are awake or asleep.
All it measures is air flow and these machines will flag that awake breathing irregularity as some sort of apnea event but they aren't real and they don't matter but the machine will still try to respond because all it knows is the breathing is doing something it doesn't like.

RERA...it's a flag given when the breathing looks like a person has had an arousal of some sort...awake or partially awake...and if you see some of them while you know you were reading then you were awake. Not a big deal..ignore them. Ignore any flags that happen while you know you are awake. Mentally remove them from the AHI too. Awake stuff doesn't count and has to be removed from the evaluation process. Your AHI might not be so bad if you had a lot of flags while reading.

Wulfman... wrote:I think you're going the wrong direction with your minimum pressure. I believe you should be increasing it and not lowering it.

Den, he backed up and decided to go up with the pressure a little more slowly because the aerophagia monster came for a visit and wasn't a nice house guest when he tried the higher pressures.

Pugsy wrote:Any events flagged during known awake times have to be mentally removed from any of the therapy evaluation.
Awake breathing is much more irregular than asleep breathing and the machine doesn't have a clue if you are awake or asleep.
All it measures is air flow and these machines will flag that awake breathing irregularity as some sort of apnea event but they aren't real and they don't matter but the machine will still try to respond because all it knows is the breathing is doing something it doesn't like.

RERA...it's a flag given when the breathing looks like a person has had an arousal of some sort...awake or partially awake...and if you see some of them while you know you were reading then you were awake. Not a big deal..ignore them. Ignore any flags that happen while you know you are awake. Mentally remove them from the AHI too. Awake stuff doesn't count and has to be removed from the evaluation process. Your AHI might not be so bad if you had a lot of flags while reading.

Wulfman... wrote:I think you're going the wrong direction with your minimum pressure. I believe you should be increasing it and not lowering it.

Den, he backed up and decided to go up with the pressure a little more slowly because the aerophagia monster came for a visit and wasn't a nice house guest when he tried the higher pressures.

What's his maximum pressure setting? That could be a problem with aerophagia if it's too high.


Den

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NightWatch23 wrote: So my next step, I guess, is to gradually increase the max. pressure? Probably not tonight, but soon. I'm not fixed, but I may see what a second day of I have the Flex up at 3. Monday night was min 7 max 12, and last night was min 6.5 max 11.

Now I just have to avoid stressing out about how far behind I am on my holiday to do list.

Maybe I found it. (if that's what it is)


Den

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Wulfman... wrote: What's his maximum pressure setting? That could be a problem with aerophagia if it's too high.

It's set for 20 initially but I think he has reduced the max since then but only once went to not quite 12 and the other time it went to just barely 10.
I didn't see a report when he tried 9 cm minimum but I doubt it went any higher then than it did with the lower minimums. If anything it should have brought the max down a bit.
His machine doesn't seem to be going very high at all.
His 90% pressures were running barely 9 cm or 10 cm.
It's not like it was going to 15 and spending a lot of time up there and if we reined it in the aerophagia would go away.

Pugsy wrote:Any events flagged during known awake times have to be mentally removed from any of the therapy evaluation.

If there were one feature request I would make for Sleepyhead, it would be to be able to see the summary detail data for only the highlighted hours of the day. That way I could manually choose only the hours where I knew I was asleep. Which reminds me, I hadn't donated for Sleepyhead yet - now done.

FrederickRose wrote: If there were one feature request I would make for Sleepyhead, it would be to be able to see the summary detail data for only the highlighted hours of the day. That way I could manually choose only the hours where I knew I was asleep. Which reminds me, I hadn't donated for Sleepyhead yet - now done.

We can sort of do it but the summary data on the left doesn't change when we just highlight a section of time.
But it will change the AHI shown under the graph...have you seen that?
It's right under the Events graph...little bitty letters.
You get the Duration of the highlighted time frame and the AHI for that time frame..doesn't break it down into categories though...we have to manually do that.

Pugsy wrote:

FrederickRose wrote: If there were one feature request I would make for Sleepyhead, it would be to be able to see the summary detail data for only the highlighted hours of the day. That way I could manually choose only the hours where I knew I was asleep. Which reminds me, I hadn't donated for Sleepyhead yet - now done.

We can sort of do it but the summary data on the left doesn't change when we just highlight a section of time.
But it will change the AHI shown under the graph...have you seen that?
It's right under the Events graph...little bitty letters.
You get the Duration of the highlighted time frame and the AHI for that time frame..doesn't break it down into categories though...we have to manually do that.

Another great SH tip - thanks

Pugsy wrote:Any events flagged during known awake times have to be mentally removed from any of the therapy evaluation.

So Friday, I went to see the sleep doc, and it made me even more glad for the help I get here. The doc looked at the numbers from my SD card, and said my AHI was now 10.6. How could that be determined without knowing how much of the recorded data occurred when I was actually asleep? It can't, but the doc passed it off as factual, assuming I wouldn't know the difference. The doc seemed suprised and ruffled that I had changed my settings. Said I couldn't continue in their "care" if I did that again, because in this situation, they are liable for my actions with my machine, which make zero sense to me, but it's not the first time laws have done that. If I thought the other place near me would have a different attiutude, I'd switch, but I doubt that's the case. At least the doc asked my opinion about what to set the machine at going forward, and we agreed on 7 min 15 max, with no argurment. Doc couldn't answer my questions, said to find out we'd need to do a titration study, the result of which might mean I need a bibap machine.

When I first read about Bipap machines, I thought why don't we all use those? But then I saw the price. I haven't checked, but I'm guessing they're heavier and use more battery, too. Phooey.

Another thing (sorry I have to rant): I have a circadian rhythm disorder (delayed), but they only do studies from 8:30 to 5 in the freakin morning. I generally have been going to sleep around 2 or 3 a.m., and they can't handle that. Plus, the questions the doc asked me about that indicated a disturbing lack of either knowledge or empathy in the realm of circadian disorders. I understand they are rare, but I expected more from a sleep doc.

On the bright side, though, I got 6.5 hours of sleep in a row last night, and today I had several hours of functionality. Seems like I'm heading in the right direction.

Well, it turned out I wasn't headed in the right direction. The doc wanted me to try a pressure range of 7 to 15, which came with a fair amount of aerophagia.
At first it looked like this:
12/8
and then I caught a cold, which then turned into strep throat for the first time in 24 years. The results from the rest of the month were fairly random and bad, and finally I just stopped for a week.

When I was finally well and ready to try again, it was still random and bad.
1/4
1/5

I got my "titration sleep test" which included only 100 minutes of sleep. From that little data, the Doc decided I should try just CPAP at 10. My AHI did actually improve some, but I was freakin' miserable. My sleep was even more fragmented than usual, and the aerophagia made me feel sick most of the time. And the results still felt like they were jumping around. I tried turning off the ramp or using it less, but it didn't seem to help.

1/15
1/20
1/21

At this point, the doc seemed to give up, said I could do whatever with the settings while I waited for the BiPAP, and I fiddled with them to no avail. I tried to upload more, but Imgur decided I was done for the night.

1/28
1/31

But here's the piece de resistance. I don't know what the heck happened here:

2/8

I can't even remember what my question is. Oh, right. I was going to ask if it would help if I got an oximeter.

I can tell you what happened in your last image.... Your max and min are to low. You maxed out most of the night. I would try min of 10 and Max of 15 and see how that goes for a couple nights.

You are all over the place. I'd rule out chin tucking, before I went further. Get a $10 soft foam cervical collar, If that's the problem, it really can turn a chart around. Then you can work on fixing it without using the collar.

You need more pressure. You need a minimum of at least 10. Set the max to 15.
Try to avoid sleeping on your back.

Hey guys...did you read this part?

NightWatch23 wrote:Doc decided I should try just CPAP at 10. My AHI did actually improve some, but I was freakin' miserable. My sleep was even more fragmented than usual, and the aerophagia made me feel sick most of the time.

We already know more pressure is needed but more pressure comes with a whole new set of problems.
If fixed at 10 causes bad aerophagia and bad sleep...just what do you think will happen with a range of 10 to 15????

To nightwatch..... can you please refresh my memory on a few things since it has been a while and I don't remember what we may have talked about in the past.

What position do you normally start the night in and do you pretty much stay in that position most of the night or do you move around all over the place when it comes to position?

Have you tried a cervical collar at all?

What is the status on the bilevel? Do you know if it will be Respironics or ResMed? Any idea when you will get it?

What range of pressures gives you the best AHI without causing aerophagia and sleep issues...I know it won't be a great AHI and not what you want but what max pressure can you use without causing bad sleep and bad aerophagia?

My suggestion...use the range that lets you at least sleep and not have belly issues...it does you no good at all to kill all the apnea events with more pressure and make yourself sick and not get any sleep doing it.
And take ajack's advice if you haven't already...get a cheap cervical collar and wear it and at least see if it helps or not.

We know you need more pressure but along with more pressure you get a host of new problems that is making you miserable and trashing what little sleep quality you had. You need a bilevel machine to stand the greatest chance of finally getting to be able to use the higher pressures and not cause more belly issues. Even then it might take some real fine tuning and compromise.