djam's therapy thread

[djams]

I'm still creeping up on that lower number. Should I be more aggressive?

I would. Given how high your pressure is actually running.

Update on this. Spent the last 2 nights with min pressure at 12. Well, actually on 2nd night started @12 and dropped it to 10 . AHI 1.02 both nights. However, this min pressure makes it way too challenging to get to sleep. When the pressure is a bit uncomfortable to me, I start an odd breathing pattern, and pretty soon I'm light headed. I'm going to go back to 8 and resume the slow march upward. I'll get to an appropriate min pressure eventually. I'm thinking I'll bump up 0.2 weekly. Little baby steps.

[zonker]

Update on this. Spent the last 2 nights with min pressure at 12. Well, actually on 2nd night started @12 and dropped it to 10 . AHI 1.02 both nights. However, this min pressure makes it way too challenging to get to sleep. When the pressure is a bit uncomfortable to me, I start an odd breathing pattern, and pretty soon I'm light headed. I'm going to go back to 8 and resume the slow march upward. I'll get to an appropriate min pressure eventually. I'm thinking I'll bump up 0.2 weekly. Little baby steps.

yup, that can happen. palerider is bold and likes to cut to the chase. me, i'm too wimpy for that. so do it slow and see how it goes.

how is the overall quality of sleep for you now?

[djams]

yup, that can happen. palerider is bold and likes to cut to the chase. me, i'm too wimpy for that. so do it slow and see how it goes.

Haha. Same here. There's no doubt that the advice is sound. It's just going to take longer to get there. In the meantime, I'll just continue feeling great. No big sacrifice.

how is the overall quality of sleep for you now?

Very good. Something I'm noticing is that it's taking longer to fall asleep. Even before I started changing lower pressure. Just not as tired when I go to bed these days. I think this is another sign of the therapy working.

[palerider]

yup, that can happen. palerider is bold and likes to cut to the chase. me, i'm too wimpy for that. so do it slow and see how it goes.

Haha. Same here. There's no doubt that the advice is sound. It's just going to take longer to get there.

You tried, you had problems, that's a good reason to back down.

.2 a week is a bit slow, but if it works for you, then do it.

[palerider]

Update on this. Spent the last 2 nights with min pressure at 12. Well, actually on 2nd night started @12 and dropped it to 10 . AHI 1.02 both nights. However, this min pressure makes it way too challenging to get to sleep. When the pressure is a bit uncomfortable to me, I start an odd breathing pattern, and pretty soon I'm light headed. I'm going to go back to 8 and resume the slow march upward. I'll get to an appropriate min pressure eventually. I'm thinking I'll bump up 0.2 weekly. Little baby steps.

yup, that can happen. palerider is bold and likes to cut to the chase. me,

Yup! I'm impatient, I want people to start having great sleep NOW! Not in six months! *stamps feet*

[djams]

*stamps feet*

LOL.

[djams]

Here's an update that I'm late posting about. Was debating whether or not to even post, as the corrective action seemed obvious to me. But since this is my "therapy thread", May as well have it on the record.

Sunday night, I woke up 5 times. Longest stretch of uninterrupted sleep ~3.5 hours. This never happens, even before I started therapy. But the worst part about the experience was aerophagia. Wow. I was gassed up like a Macy's day balloon! And VERY uncomfortable, right on the edge of painful. Also during this wakeup, I changed my max pressure from 20 to 16.4 (was aiming for 16, was close as I could get without my readers). BTW - myAir site gave me a 97 score for this train wreck.

Needless to say, I felt terrible all day on Monday. And I certainly don't want to go through another night like that. I'm going forward with the max at 16, and will bump it up incrementally along with the low pressure to see if I can determine where my aerophagia limit is. AHI's at min 9/max 16 since Sunday: 1.69, 3.14, 0.51

I know from the daily SH results that I need to be at 20. Is there a chance that this "sneaking up" approach will help me get there aerophagia-free?

.2 a week is a bit slow, but if it works for you, then do it.

Was trying the .2 changes out and I could hardly tell the difference with 0.2 change. Will be doing 0.4 changes. I've already got my low pressure back at 9, was feeling starved of air.

Here's the chart, as always - comments welcome.

20180708.PNG (141.16 KiB) Viewed 21726 times

[Pugsy]

I just got caught up with your progress.

I don't normally have bad aerophagia issues but I have had it bad enough twice that I have some serious empathy for those that have to fight that war every night. I had it bad enough I was ill the next day from it...I will share with you what I would do if I had to fight that battle every night.
I would sit back and take a long look at how I felt during the day and how well I slept during the day and the AHI would be at the bottom of my list of things to look at as long as it was below 3.0 and I was sleeping good and feeling decent in general.
The best most perfect AHI in the world doesn't mean squat if we get it and feel like total crap the next day.

Try increasing EPR from the 2 to 3 and see if it helps or not with the aerophagia.
Work on finding the line in the sand where you can keep the aerophagia monster away and not have to allow too many apnea events slide past the defenses because the pressure wasn't quite optimal. Sometimes we just have to make compromises.
Revisit the higher pressure thing in maybe 6 months to see if the current line in the sand might have changed. Wouldn't be impossible for what causes the aerophagia monster to show up now won't make him show up in 6 months.

Don't be afraid to take your time and be patient. Sometimes that's just what we have to do when we also have to deal with something besides the OSA side of things. Just because someone else can go jump in the deep end of the pool doesn't mean that you have to do what they do. Sometimes you have to work your way into the deep end for any number of reasons and sometimes some people just need to stay out of the deep end.
You have a strong positional component to your OSA...if it were me I might lean towards working on staying out of the bad position more since the aerophagia monster seems to want to be a frequent visitor. Normally I would say sleep in any position you want and let the machine sort it out but in this situation might be worth trying to stay off the bad position as much as possible. That monster really messes us up sometimes.

[palerider]

I know from the daily SH results that I need to be at 20. Is there a chance that this "sneaking up" approach will help me get there aerophagia-free?

Well, it's *possible* that when you get your min up far enough, that it'll tame some of the things that cause it to drive up the pressure, and result in lower max pressure needs.

[zonker]

I just got caught up with your progress.

I don't normally have bad aerophagia issues but I have had it bad enough twice that I have some serious empathy for those that have to fight that war every night. I had it bad enough I was ill the next day from it...I will share with you what I would do if I had to fight that battle every night.
I would sit back and take a long look at how I felt during the day and how well I slept during the day and the AHI would be at the bottom of my list of things to look at as long as it was below 3.0 and I was sleeping good and feeling decent in general.
The best most perfect AHI in the world doesn't mean squat if we get it and feel like total crap the next day.

Try increasing EPR from the 2 to 3 and see if it helps or not with the aerophagia.
Work on finding the line in the sand where you can keep the aerophagia monster away and not have to allow too many apnea events slide past the defenses because the pressure wasn't quite optimal. Sometimes we just have to make compromises.
Revisit the higher pressure thing in maybe 6 months to see if the current line in the sand might have changed. Wouldn't be impossible for what causes the aerophagia monster to show up now won't make him show up in 6 months.

so much this!

to djams: what pugsy says here is pretty much what has happened to me. the aeophagia just wasn't worth the battle for me. i keep my low pressure at 9,.5 because anything higher than that just afflicts me with too much gas.

and so, i'm not going to see a tremendously low ahi. i stay mainly between 1 and 2 for the night. and i sleep reasonably well. i still have issues but in the main, i feel pretty good during the day. it's when my ahi rises above 2 that i start to feel like i haven't had a good night's sleep.

sure, i could achieve zero, but i wouldn't be getting much sleep at the high pressures it would take.

[djams]

I don't normally have bad aerophagia issues but I have had it bad enough twice that I have some serious empathy for those that have to fight that war every night. I had it bad enough I was ill the next day from it...I will share with you what I would do if I had to fight that battle every night.
I would sit back and take a long look at how I felt during the day and how well I slept during the day and the AHI would be at the bottom of my list of things to look at as long as it was below 3.0 and I was sleeping good and feeling decent in general.
The best most perfect AHI in the world doesn't mean squat if we get it and feel like total crap the next day.

Try increasing EPR from the 2 to 3 and see if it helps or not with the aerophagia.

Indeed! I consider what I experienced to be mild compared to the symptoms I see posted here. I absolutely feel for the suffers as well. So far, I'm like you in this regard, I've experienced very very mild symptoms, but Sunday was completely different. I forgot to mention the "one night EPR 2" experiment in my update. I have changed it back to 3. Definitely wanted to undo anything that might have contributed to that experience. I didn't even make the connection that the 2 might be related. Thanks for pointing this out.

Work on finding the line in the sand where you can keep the aerophagia monster away and not have to allow too many apnea events slide past the defenses because the pressure wasn't quite optimal. Sometimes we just have to make compromises.
Revisit the higher pressure thing in maybe 6 months to see if the current line in the sand might have changed. Wouldn't be impossible for what causes the aerophagia monster to show up now won't make him show up in 6 months.

Understand about the comprises. I will be searching for that line in the sand, that's for sure. Slowly.

Don't be afraid to take your time and be patient.

This isn't my strong suit. But I'm going to try.

You have a strong positional component to your OSA...if it were me I might lean towards working on staying out of the bad position more since the aerophagia monster seems to want to be a frequent visitor. Normally I would say sleep in any position you want and let the machine sort it out but in this situation might be worth trying to stay off the bad position as much as possible. That monster really messes us up sometimes.

I've been working at falling asleep on my side, both at bedtime and after the bathroom runs. Once I'm asleep it seems to be completely out of my hands.

I do want to point out that I still feel great about CPAP therapy. It's making a real difference in my life. This current quest I'm on is to see if I can feel even better, and honestly if I have to be satisfied with the current state, I'm good. So your points about slowing down make a lot of sense. My doc wrote in the prescription that "patient will likely need therapy for the rest of his life" - hopefully that's a good long time.

Thanks for the response and the advice - and welcome back!

[djams]

Well, it's *possible* that when you get your min up far enough, that it'll tame some of the things that cause it to drive up the pressure, and result in lower max pressure needs.

I recall you stating this earlier in the post. Makes a lot of sense to me, and is what I'm going to keep after - creeping up on the min pressure. It seems like this will reduce the severity of my flow limitations, and prevent the machine from wanting to jump up to 20, at least jumping so quickly.

[djams]

I just got caught up with your progress.

I don't normally have bad aerophagia issues but I have had it bad enough twice that I have some serious empathy for those that have to fight that war every night. I had it bad enough I was ill the next day from it...I will share with you what I would do if I had to fight that battle every night.
I would sit back and take a long look at how I felt during the day and how well I slept during the day and the AHI would be at the bottom of my list of things to look at as long as it was below 3.0 and I was sleeping good and feeling decent in general.
The best most perfect AHI in the world doesn't mean squat if we get it and feel like total crap the next day.

Try increasing EPR from the 2 to 3 and see if it helps or not with the aerophagia.
Work on finding the line in the sand where you can keep the aerophagia monster away and not have to allow too many apnea events slide past the defenses because the pressure wasn't quite optimal. Sometimes we just have to make compromises.
Revisit the higher pressure thing in maybe 6 months to see if the current line in the sand might have changed. Wouldn't be impossible for what causes the aerophagia monster to show up now won't make him show up in 6 months.

so much this!

to djams: what pugsy says here is pretty much what has happened to me. the aeophagia just wasn't worth the battle for me. i keep my low pressure at 9,.5 because anything higher than that just afflicts me with too much gas.

and so, i'm not going to see a tremendously low ahi. i stay mainly between 1 and 2 for the night. and i sleep reasonably well. i still have issues but in the main, i feel pretty good during the day. it's when my ahi rises above 2 that i start to feel like i haven't had a good night's sleep.

sure, i could achieve zero, but i wouldn't be getting much sleep at the high pressures it would take.

Yes, getting AHI=0 because you stayed awake all night would be cheating!

It's just really good to hear that I'm not alone in what I'm experiencing. Thanks zonker.

[Pugsy]

Sometimes the least little change in a setting can cause huge disastrous results.
One of the times I had the really bad aerophagia was after I turned my exhale relief off. I was using a Respironics machine at the time and had been using the AFlex exhale relief set at 2. I forget why I decided to turn it off but the results of that experiment were so bad I never repeated it. I promptly set it back to 2 and even now that I use a ResMed machine I still use exhale relief. There's just something about it that my body seems to need and want.

Here's the thread where I reported on that disastrous experiment.
Pictures of the reports still show up so far.
viewtopic.php?f=1&t=67883&p=631376&hili ... mb#p631376
the link may take you to the bottom of the thread...just scroll up to get to the top. For some reason my link wants to take me to the last post
So it's very possible that the slight change in EPR from your normal 3 down to 2 played a big part in the bad night you had.

To try to help you stay on your side more...I know that is easier said than done once we are asleep but if I was wanting to try to really limit the back sleeping here is what I did and would do again. I did a month long experiment to see if my pressure needs changed with position. I already knew that they changed in REM stage sleep and sometimes changed significantly so I wanted to see if they would still change a lot if I never went on my back.

So I tried various methods of using something to keep me off my back and not cause discomfort or more pain or sleep issues.
Regular bed pillows as a wall...not effective as they would just slide out from under me. Even tried a big foam wedge but it also would slide around.
What I ended up having decent success with was my buckwheat hull pillow that I normally use as my bed pillow under my head. I have a bad neck and my neck position is critical to good sleep so I have used a buckwheat hull pillow.
There is substantial weight to the buckwheat hull pillow...so I thought to give it a try and see if it would stay in place and not slide out so easily.
It worked decently...some movement but not nearly as much as with the other stuff I tried.
The added bonus for me was that with it up against my spine when on my side that when I would try to roll over on my back and was stopped it was quite comfy up against my spine. Nice support...didn't make my back pain worse. And while I might not totally be on my side...I might be sort of at a 45 degree angle...and not totally flat on my back. It was a nice compromise....helped me stay off my back for the most part and didn't cause increased pain (like the tennis ball trick).

I did this for a month...and the end of the month I saw that I still had times where I know I was off my back either totally or partially and I still had times when the pressure needs were significant in probably REM. For me I decided I might as well sleep in whatever position I wanted and let the machine sort it out since there was never any real reduction or change in pressure needs during that month.
But if there had been....and I wanted to try to stay off my back I would use the buckwheat hull pillow again.
Even now I sometimes will slide the older smaller buckwheat hull pillow against my spine because I actually prefer side sleeping...supine sleeping actually causes me a lot of back pain...so I will sometimes use that pillow just because my back is already hurting so bad that I don't want the pain to be made even worse. My biggest problem with sleep...the wake ups from the pain so I do what I can to help prevent the pain. Often I don't get the hours of sleep I need because I wake up and I am hurting so bad I can't go back to sleep and can't get comfortable...so I just get up.

So you might think about the buckwheat hull pillow trick...needs to be a heavy pillow though. Too light and it slides right out from under me.
Don't want a huge one though...not if you have someone else sharing your bed. Simply not enough room for a big pillow and another person.

[djams]

Here's the thread where I reported on that disastrous experiment.

That sleep report gives new meaning to "an eventful evening"! Amazing that pressure relief can make such a difference. I appreciate that it's there, that's for sure. Oddly enough, my sleep Dr has all machines distributed by his practice setup with EPR off. I got this tidbit from the PA when I asked about EPR at my 30 day follow up. She half whispered to me: "it's OK if you turn it on". I'll ask the doc why next time I see him, because I'm genuinely curious now.

What I ended up having decent success with was my buckwheat hull pillow that I normally use as my bed pillow under my head. I have a bad neck and my neck position is critical to good sleep so I have used a buckwheat hull pillow.
There is substantial weight to the buckwheat hull pillow...so I thought to give it a try and see if it would stay in place and not slide out so easily.

This is a great suggestion. Buckwheat pillow. Never heard of it before. Just watched a couple of YouTube videos, I'm going to this a try.

And by the way, I'm sitting here tonight fighting an urgent desire to bump my max pressure up a notch. Not going to do it yet.