Suffering part 2: Lowered the EPR

[kaiasgram]

Please stay with me here, guys, I really need your support. Based on yesterday's thread (thank you again to all who offered their ideas and suggestions) I decided to lower my EPR last night. I always do one thing at a time, and because my aerophagia had improved with EPR=3 I wasn't ready to turn it off completely but I did reduce it from 3 to 1. I got to bed very late (around 2 a.m.), but fell asleep quickly and easily as usual without really noticing any difference in the way it felt after changing EPR to 1. What happened after that was freaky and disturbing and I don't understand it at all. Maybe it's "the aliens" as Pugsy would say.

As you can see I started having some trouble within about an hour and a half of falling asleep -- a few leaks and no apneas but breathing got whacky and you see the changes in the other graphs around that time. For some period of time prior to my waking up (and taking a break) around 5 a.m., I was dreaming about being on the machine and hearing a semi-loud continuous clicking noise. I woke up in a super stressed state and although I no longer heard the clicking, I had a feeling that it wasn't all a dream -- it seemed like I was having a sensory experience like some kind of tinnitus or something. I don't think the machine itself was causing the clicking noise but I really have no idea. I got up, took a short break, put my EPR back to 3 and went back to sleep until around 11:30 a.m. I'm up now and feeling as wiped out, spacey and headachy as ever. (BTW about a week or two ago I recall a similar clicking sound (or sensation) one night but it was short-lived and though I noticed it and wondered about it, it didn't create great disruption like it did last night.)

One other oddity about last night's data is that for the first time ever in my month of cpap use, I had no CA's at all last night, even during my restless periods. None with the EPR at 1, and none after I reset the EPR back to my usual 3. I am not complaining about this, I just wonder what if anything it could mean about the big picture of whatever is going on. My AHI was .22 for the whole night, that was due to 2 hypopneas.

Even though as Max said yesterday the primary problem does not appear to be apnea anymore, I still have a sleep disorder that is not yet diagnosed or adequately treated. And it is torturous at this point. Much worse than before I started CPAP. I hope you, my fellow pappers, will hang in there with me until this gets figured out. I'm pushing for some attention from my sleep doctor and trying to get a neurologist involved in this. So I'm not expecting anyone here to diagnose anything, just to keep sharing your thoughts and stay in touch here. I'm still willing to do some tweaking and I need to keep hearing from y'all. Many many thanks.

[RandyJ]

I find it puzzling that you would need EPR or experience aerophagia at such low pressures (for me 5 or 6 cm would feel like no air at all, never mind subtracting 3 cm for EPR at 3!). Have you had a full exam with scope by an ENT to determine that everything is normal with your palate/throat/esophagus?

If you were using EPR at 3, did you think about going to 2 before you tried 1? Maybe you just need to decrease gradually...

[kaiasgram]

Hi RandyJ -- Thanks for checking in. Actually my aerophagia got better when I lowered my max pressure, but I had started using EPR=3 at the very beginning when my max pressure was still set at 10 and just left EPR the same since then. It's possible that with my max pressure being lower now (8.2), I no longer need EPR -- however last night I lowered EPR from 3 to 1 and had a hellacious night as I described above -- though I can't say for sure that it had anything to do with changing the EPR. BTW, when my pressure is running at the low setting (6), the EPR will only take me down to 4, as that's the lowest the pressure can go on my machine under any circumstances. So effectively I'm only getting an EPR of 2 if I'm running at my lowest set pressure of 6. In any case, I've had upper endoscopy by a GI doc but not to evaluate my airway. Believe me, after the past few nights I will be asking for a neurologist, pulmonologist, AND ENT doctor because my quality of life has so deteriorated that I want to stop the world and get off (I'm not at all suicidal just suffering a lot and feeling hopeless).

Knowing my sensitivity I should have just gone to 2. Good suggestion and I'll try that -- maybe not tonight, I think I'll not change anything tonight, but I might be ready to try 2 the next night.

[RandyJ]

A visit with pulmonologist and/or ENT couldn't hurt. Good luck decreasing gradually. You may want to try wearing mask with machine running for a few mins while reading before bed to get used to how the different EPR setting feels before trying to sleep with it...

[Lizistired]

I find last night a little baffling.
Were there other sleep hygiene variables in play? Eating late, alcohol, meds, anxiety...?
I just ask because some of the graphs seem to contradict each other, like the extreme flow limitations when you first went to sleep. Increased respiratory rate and pressure, but your minimum ventilation is the lowest of the night.

Do you zoom in and look at your flow line? You may not be having "apneas", but you can stop breathing for 9 seconds and it isn't flagged as an apnea.
I have had them back to back in REM, desat into the 80's, and still have a 0.0 AHI.
That's what concerns me about your minimum being to low.

Leave the EPR at 3 if you are more comfortable with it.
But I would raise the minimum 1 cmh20, and see what that does.

I want your leak line!!

[DoriC]

I don't remember if you've mentioned this but what is your bed pillow arrangement? And has anyone suggested you might try raising the head of your bed. My husband doesn't have aerophagia but we put a telephone book under each leg of the headboard which feels more comfortable for him just by raising it a few inches. Just a thought.

[kaiasgram]

I find last night a little baffling.
Were there other sleep hygiene variables in play? Eating late, alcohol, meds, anxiety...?
I just ask because some of the graphs seem to contradict each other, like the extreme flow limitations when you first went to sleep. Increased respiratory rate and pressure, but your minimum ventilation is the lowest of the night.

Do you zoom in and look at your flow line? You may not be having "apneas", but you can stop breathing for 9 seconds and it isn't flagged as an apnea.
I have had them back to back in REM, desat into the 80's, and still have a 0.0 AHI.
That's what concerns me about your minimum being to low.

Leave the EPR at 3 if you are more comfortable with it.
But I would raise the minimum 1 cmh20, and see what that does.

I want your leak line!!

You can have my leak line but you wouldn't want what comes with it ! I'm not too good yet at interpreting all the graph lines but I'm baffled too and I thought there were contradictions too. I did go to bed later than usual by a little over an hour. Nothing unusual as far as food, and I never eat late anymore. No alcohol. I take an anti-anxiety med but have all along, so that's not new or different either.

The really different thing was that strange and disturbing sensation I was having of continuous clicking while I was dreaming about being on the machine. I'm still not sure I was actually dreaming, I might have actually been 'hearing' clicking much like one 'hears' the ringing of tinnitus. Creepy. When I woke up I was pretty hyperaroused and had to get up and take a break before going back to sleep. Normally my 'best' stretch of sleep, when I get one, is the first part of the night. The other different thing as I mentioned earlier is the absence of any clear airway events, when all along those are the only events I've had with very few exceptions. No idea what to make of that or if it means anything at all.

Which flow line are you suggesting I zoom in on? I'll take a look -- so you're suggesting I look for <10 sec dips, or flatlining? Will you let me know what a <10 sec apnea would look like on which graph lines? Thanks!

[kaiasgram]

I don't remember if you've mentioned this but what is your bed pillow arrangement? And has anyone suggested you might try raising the head of your bed. My husband doesn't have aerophagia but we put a telephone book under each leg of the headboard which feels more comfortable for him just by raising it a few inches. Just a thought.

Hi Dori -- I have a bed wedge and over time have added several pillows on top of that (thinking I was preventing acid reflux, which is what I initially got diagnosed -- really misdiagnosed -- with). My upper body is so elevated that I sometimes wake up with a sore tailbone. On several occasions recently I removed a few of the extra pillows but woke up overheated and with worse aerophagia, so I went back to my usual arrangement.

[Lizistired]

The green line is my O2 and the red line that it appears to be hanging off of is 90%.
The squiggly line is the flow in Resscan. See how the O2 drops line up with the reduced flow?
And those aren't even close to being "apneas".

Now I'll go back up and read your post.
So that's why they keep bringing me phone books!

[kaiasgram]

The green line is my O2 and the red line that it appears to be hanging off of is 90%.
The squiggly line is the flow in Resscan. See how the O2 drobs line up with the reduced flow?
And those aren't even close to being "apneas".

Now I'll go back up and read your post.
So that's why they keep bringing me phone books!

Liz, so is your flow line in ResScan the "flow rate" line in Sleepyhead? I've been zooming in and looking at sections of my flow rate line (I really now see the value of having that oximeter too). I'll post a section of some closeup segments and maybe you can tell me what you think. If there's a point in time you think I ought to zoom in on, I'll do that and have you take a look at it too. Now, these "mini-apneas" (<10 sec), these are not the same thing as RERAs, are they? I thought I read that RERAs do not usually involve o2 dips. Would they look different on a flow rate line?

[Suzjohnson]

Just a thought on the clicking you heard. I occasionally get an accumulation of moisture in the pillows and it will produce a clicking or popping sound. Do you ever notice tiny droplets of water in the pillows or the short hose? Not a lot, just a few. It's amazing the amount of noise a few little droplets of moisture can make.

Suz

[Lizistired]

Good point Suz. I was thinking I had heard a clicking sound from the pillows but couldn't remember what caused it. Moisture/condensation can build up between the inner and outer layer of the pillows .
Another thing to check for, your pillows may be different, but on the swifts, sometimes the inner pillow gets inverted, usually happens when you clean it. Look inside the part that goes in your nose, and you should see an inner cup/pillow. Check that. You can run a q-tip around between them to clean out any moisture too.

[kaiasgram]

The moisture thing is a possibility. The past couple of mornings I've had a drop or two inside the pillow. I don't think there was moisture this morning but I had such a headache and was so wiped out I didn't check carefully. I'll watch for that. Thanks.

[Lizistired]

So, if your bed is all ramped up, are you sleeping on your back all the time?
Before I demanded a sleep study I went throught the same crap with my dr, wanting to give me nexium... I started reading about it, diet and raised the head of my bed, and then stumbled upon and article about UARS, (upper airway resistance syndrome). Duh. Fit me perfectly. Haven't had a problem with it since I got on cpap.
I really think when your airway closes your lungs suck the acid up from your stomach. Well, mine anyway.

[kaiasgram]

So, if your bed is all ramped up, are you sleeping on your back all the time?
Before I demanded a sleep study I went throught the same crap with my dr, wanting to give me nexium... I started reading about it, diet and raised the head of my bed, and then stumbled upon and article about UARS, (upper airway resistance syndrome). Duh. Fit me perfectly. Haven't had a problem with it since I got on cpap.
I really think when your airway closes your lungs suck the acid up from your stomach. Well, mine anyway.

Yep, all ramped up. For a long time I haven't been able to sleep on my left side, I inevitably wake up from a nightmare with my heart racing and all overheated. Now I can't sleep on either side because the aerophagia acts up, mask leaks, etc. So I'm propped up on my back virtually all the time.

I'm posting a couple of zoom-in shots from last night and I'm hoping you can tell me what you think is going on. Two shots are from the period of time before I woke up from the "clicking" and one is later in the early a.m. when I thought I was getting more restful sleep. Coming up...