bjhunt01 therapy help thread

[Pugsy]

So...the first sleep session where there's not much going on but the ugly flow limitations....you were asleep??? Is that correct?
Then the big section with a truckload of CAs you were awake during that time until the flow limitation graph got ugly and the CAs essentially stopped.
Looks like we can maybe judge awake vs asleep by watching the flow limitation graph....is that a fair assumption?
Heckuva way to tell sleep status.

What I was trying to determine is if there is a real problem with centrals in your situation or not and if what I am think is correct then the centrals/CAs aren't real and other than they reflect poor sleep they aren't a problem in terms of your brain simply not telling your body to breathe.

I still don't know what to make of the sounds that are bugging you unless...and I am going out on a long skinny limb here...they are related to flow reductions evidenced by the ugly flow limitations we are seeing.

I know that higher pressures seem to cause you some aerophagia issues...but you aren't sleeping well either which is not good.

At this point if this were my graphs and I was in the same boat with aerophagia issues and NOT sleeping so great because of the sounds...I think I would at least let the machine try to deal with the FLs and see if the sounds that are annoying reduce so you can sleep and not invite the aerophagia monster.

If you look at the times you were asleep....you don't have many OAs or hyponeas so I don't think you need more minimum pressure at this time. We haven't really seen what would happen with the FLs if the machine could go higher. Would they reduce and would the weird noises also reduce.

I would start with small increases in the maximum pressure and see at what point the aerophagia monster came back.
Maybe revisit more EPR when the point of aerophagia returns.

And of course try to figure out how to minimize the leak better. The first session...that small amount of leak isn't a big deal unless it wakes you up. The last session...that leak is big and prolonged and could stand some work even if you slept through it if you see this a lot.

[djams]

I haven't cut holes for my ears, but sometimes my ears can get folded up under the hairband when I turn over to the other side, which hurts, so I'm considering it.

I cut ear holes because I couldn't keep it anchored in place. The holes work for that purpose but the scunci would shift on me and the thin material got pulled against my ear. Ouch.

Cut one and see how it goes

[zonker]

If there is a way to delete the data up until 8:15 to 8:20, I don't know how yet.

not exactly delete the data, because the data is still there, but there is a way to display a chunk of it.

mouse up to 8:15. then hit the left mouse key. hold it and drag back to when you started. right below the events graph, it'll show the time and ahi.

here, have an example-

examplescreenshot.png

in the above, i grabbed time from 3:30 or so am back to when i turned on the machine. between event flags and flow limit, you'll see a tiny bit of text that tells me how long a time period, my ahi and flow rate.

that what you want?

[bjhunt01]

You can get a dental appliance that is molded to fit your teeth, upper an lower. They aren’t cheap if you get a good Mandibular Advancement Splint. It can help pull your lower jaw forward and stabilize your airway against big collapses, allowing the cpap to not work as hard or at as high a pressure. Your experience may very in pressure needed, but it will keep you jaw locked together at night and it won’t drop because it can’t drop. Expect to pay $500-$2,500 depending on the dentist that makes it. Insurance may help for Medicare. I’ve been told it will. If it’s covered, I’d get one if I were you and give it a go and make your insurance work as hard as it can. Your teeth may hurt a little to start, but don’t have the dentist titrate your jaw too forward with it. Use it more as a stabilizer. You will still have to tape your lips closed with cpap though, but way less. I have a friend that uses both a Mandibular Advancement Splint and Cpap as dual therapy. There are dentists specifically trained for it, but do your research too, if you consider it. Some dentist thick they know what they are doing and don’t.

Hi Dreaming - Thanks for that information. I have been trying to find an OTC mandibular etc and have bought a few but can''t get them to hold my lower teeth in place so my jaw drops. I haven't given up on this idea however because as I go through this experience, I'm beginning to be convinced that this is one thing I need. No matter how tightly I tape I still have the drop inside my mouth even though lips are taped together. Thank you for the encouragement to continue with this search as well.

[bjhunt01]

So...the first sleep session where there's not much going on but the ugly flow limitations....you were asleep??? Is that correct?
Then the big section with a truckload of CAs you were awake during that time until the flow limitation graph got ugly and the CAs essentially stopped.
Looks like we can maybe judge awake vs asleep by watching the flow limitation graph....is that a fair assumption?
Heckuva way to tell sleep status.

What I was trying to determine is if there is a real problem with centrals in your situation or not and if what I am think is correct then the centrals/CAs aren't real and other than they reflect poor sleep they aren't a problem in terms of your brain simply not telling your body to breathe.

I still don't know what to make of the sounds that are bugging you unless...and I am going out on a long skinny limb here...they are related to flow reductions evidenced by the ugly flow limitations we are seeing.

I know that higher pressures seem to cause you some aerophagia issues...but you aren't sleeping well either which is not good.

At this point if this were my graphs and I was in the same boat with aerophagia issues and NOT sleeping so great because of the sounds...I think I would at least let the machine try to deal with the FLs and see if the sounds that are annoying reduce so you can sleep and not invite the aerophagia monster.

If you look at the times you were asleep....you don't have many OAs or hyponeas so I don't think you need more minimum pressure at this time. We haven't really seen what would happen with the FLs if the machine could go higher. Would they reduce and would the weird noises also reduce.

I would start with small increases in the maximum pressure and see at what point the aerophagia monster came back.
Maybe revisit more EPR when the point of aerophagia returns.

And of course try to figure out how to minimize the leak better. The first session...that small amount of leak isn't a big deal unless it wakes you up. The last session...that leak is big and prolonged and could stand some work even if you slept through it if you see this a lot.

Hi Pugsy: I am just now reading this and about to post last night's graph.

To answer your questions:

1. I think my centrals are primarily when I am struggling to go to sleep and/or waking up from or from having to fiddle with the mask or all the cold packs I have to adjust for my aching head. So I don't think I am sound asleep for most of these. I wake up a lot sometimes with mask adjustments, go to pee 2 or 3 times, have to go get colder cold packs, readjust them, my nose gets stuffed, I forgot and took pseudoephedrine hoping like crazy I can breathe but not wake up. But then I do about 5 or 6 and am awake for a few hours when I do that. Trying to spray my nose instead now. So I think your remark about judging awake and sleep times by flow status is on target.

2. Re: the sounds that are bugging me that I hear on the SnoreLab are from the internal jaw drop and tongue leaving the roof of my mouth no matter how well I'm taped. They are motorboating and/or a throat snore like the pig rooting sound. I don't always hear them while sleeping if I'm really passed out but they cause some arousal and interfere with my sleep being restful. (So Centrals?) Sometimes they do wake me up. I notice that is usually toward the morning after 8 or 9:00 a.m. And then they keep waking me up. The last 2 nights I haven't been able to tape to the max because my face has sores on it so the minimal taping has likely caused more leaks plus I was using a different mask. The weird noises are always on my SnoreLab when my mouth has dropped inside my throat. I can't lay on my sides because of hip pains so I am always on my back. And sometimes my nose gets stuffed at least on one side if not both during the night. Last night I tried the cervical collar. Think that might have helped my scores on all my apps. It could have lessened the chin relaxing and dropping inside my throat thingy.

3. Yes - not sleeping well most nights and all through the night is a big problem caused by the above things. And that's probably why I seem to need so much sleep is because of all the wake ups. If I could sleep through the night without waking up I bet I would need less sleep/be in the bed less time.

4. Very weird thing about last night: 40+ leaks!!!! and an AHI of 1.62. I totally do not understand how this stuff works.
And speaking of how I don't understand things, you said "you don't have many OAs or hypopneas so I don't think you need more minimum pressure at this time." So am I to understand that those occur at not enough minimum pressure?

5. I was intrigued by you pointing out a few days ago that I am always pushing the max so have been increasing and last night got bold and went to 10.2 all night. As you suggested in this post to me too.
I slept pretty well all through the night because I was so tired from not enough sleep the night before. Only got up once to go to the restroom.
I have also been intrigued by you saying that turning off the EPR, which I tried a few times, seemed to cut the centrals. So last night, I turned it off again.
But since I didn't wake up a lot last night, that would also reduce the centrals.

6. How weird is this that the flow limitations are greater when there were no leaks. And less with all the leaks. Not understanding things, it would seem to me that flow limitations would be higher when you are leaking because it seems your body would have to work harder to get air when leaking. And, with all those leaks, you'd think they'd wake me somewhat and cause Centrals. Could this get any more confusing? To me anyway.

7. I am becoming more and more convinced that I need some kind of mandibular adjustment device that will hold my/force my lower teeth in place and not allow the internal drop. I started with the cervical collar last night but haven't added Scuncis yet ala Zonker's picture. Would hope that they will help so I don't have to do the dental device as they are so uncomfortable.

So...here is last night. Again I thank you for the time you spend in looking at these and advising me and educating me!

[Pugsy]

The deeper into large leak territory you go (higher leak numbers) the less ability the machine's sensors will have in terms of being accurate. At 30 L/min it's still going to be fairly accurate. Above 35 L/min things really start getting iffy and the higher you go the iffier it gets.

So when you see less flow limitations when you are seeing really large leaks...I tend to think it's more the machine being clueless than the FLs actually lessening. I think they are still bad but the machine's sensors can't do a good job sensing when really big leaks are happening.

[bjhunt01]

If there is a way to delete the data up until 8:15 to 8:20, I don't know how yet.

not exactly delete the data, because the data is still there, but there is a way to display a chunk of it.

mouse up to 8:15. then hit the left mouse key. hold it and drag back to when you started. right below the events graph, it'll show the time and ahi.

here, have an example-

examplescreenshot.png

in the above, i grabbed time from 3:30 or so am back to when i turned on the machine. between event flags and flow limit, you'll see a tiny bit of text that tells me how long a time period, my ahi and flow rate.

that what you want?

Zonker: Thanks! I see how to do that now.

[Jas_williams]

You can get a dental appliance that is molded to fit your teeth, upper an lower. They aren’t cheap if you get a good Mandibular Advancement Splint. It can help pull your lower jaw forward and stabilize your airway against big collapses, allowing the cpap to not work as hard or at as high a pressure. Your experience may very in pressure needed, but it will keep you jaw locked together at night and it won’t drop because it can’t drop. Expect to pay $500-$2,500 depending on the dentist that makes it. Insurance may help for Medicare. I’ve been told it will. If it’s covered, I’d get one if I were you and give it a go and make your insurance work as hard as it can. Your teeth may hurt a little to start, but don’t have the dentist titrate your jaw too forward with it. Use it more as a stabilizer. You will still have to tape your lips closed with cpap though, but way less. I have a friend that uses both a Mandibular Advancement Splint and Cpap as dual therapy. There are dentists specifically trained for it, but do your research too, if you consider it. Some dentist thick they know what they are doing and don’t.

Hi Dreaming - Thanks for that information. I have been trying to find an OTC mandibular etc and have bought a few but can''t get them to hold my lower teeth in place so my jaw drops. I haven't given up on this idea however because as I go through this experience, I'm beginning to be convinced that this is one thing I need. No matter how tightly I tape I still have the drop inside my mouth even though lips are taped together. Thank you for the encouragement to continue with this search as well.

A soft cervical collar can prevent your chin dropping by putting gentle upward pressure on your jaw

[chunkyfrog]

Gentle is the key.
Some joints are sensitive to forced displacement--especially the jaw.
I would never wish temperomandibular pain on anyone.
My cubicle mate had it for years, and her pain affected me deeply.

[bjhunt01]

The deeper into large leak territory you go (higher leak numbers) the less ability the machine's sensors will have in terms of being accurate. At 30 L/min it's still going to be fairly accurate. Above 35 L/min things really start getting iffy and the higher you go the iffier it gets.

So when you see less flow limitations when you are seeing really large leaks...I tend to think it's more the machine being clueless than the FLs actually lessening. I think they are still bad but the machine's sensors can't do a good job sensing when really big leaks are happening.

Hi Pugsy: So I had a Scunci and neck collar success last night! (Thank you Zonker for your picture!) Hopefully that is the ticket to avoid the mouth drop leaks. Plus I changed masks to an N20. I have amazing numbers! It's a work of art and a thing of beauty compared to others! I had to get up early because an insurance adjuster was coming. We've been having tremendous damaging storms in Dallas. Since this went so well, tonight I'll go back to the Bleep and see if I can replicate these. Here's last night's miracle. The snoring app looks good and this is the first time I was in the 90+ for Restful Sleep on the Better Sleep app. If you have any suggestions or changes I would welcome them!

[zonker]

Hi Pugsy: So I had a Scunci and neck collar success last night! (Thank you Zonker for your picture!)

good going! pugsy will give you the outstanding advice. all i have to say is stay with it for the next few nights without changing anything. give your brain time to make these changes become second nature.

i know, i know...easier said than done. if you are anything like what i was in the beginning, i wanted it all NOW. but i caution you to exercise patience.

i repeat, good going!

[bjhunt01]

Hi Pugsy: So I had a Scunci and neck collar success last night! (Thank you Zonker for your picture!)

good going! pugsy will give you the outstanding advice. all i have to say is stay with it for the next few nights without changing anything. give your brain time to make these changes become second nature.

i know, i know...easier said than done. if you are anything like what i was in the beginning, i wanted it all NOW. but i caution you to exercise patience.

i repeat, good going!

Lord man! I have patience - I started CPAP therapy on September 6. Been through 9 masks. I'll spare you the rest!!! Tonight I'll take a picture for you of my Zonker get up and post it. You shouldn't have to be the only funny looking person on here! Best of all I didn't have to use ANY tape - ahhhh sigh of relief!!!

[Pugsy]

Try your new scunci and collar with the Bleep...don't change anything else.

Yes...I know the FL graph is a bit ugly but lets put that on the back burner for now...
Once you can consistently sleep decently with minimal leaks and minimal wake ups...then maybe revisit more maximum pressure to help deal with the FLs.

[zonker]

Try your new scunci and collar with the Bleep...don't change anything else.

oh! that's a terrific idea. i bet this will be, in the long run, the winning combination.

[zonker]

Lord man! I have patience - I started CPAP therapy on September 6. Been through 9 masks. I'll spare you the rest!!! Tonight I'll take a picture for you of my Zonker get up and post it. You shouldn't have to be the only funny looking person on here! Best of all I didn't have to use ANY tape - ahhhh sigh of relief!!!

then you are much better than me! i hated feeling like a failure when i first started. and lacked all kinds of patience.

carry on and i look forward to the picture.