bjhunt01 therapy help thread

[bjhunt01]

Use EPR at whatever setting feels good to you. Should the reduction during exhale cause some obstructive stuff to happen ....we deal with it if/when it happens.

The mouth opening stuff....that's unlikely to be fixable with a magic tweak in the settings. You have to sort through the various options to figure out which one seems to suit your needs the best to keep the mouth shut for the majority of the time.
I wouldn't sweat the small stuff but remember anything that disturbs sleep is unwanted....no matter how big or how small.

Primary goal has to be decent sleep quality because without sleep none of this other stuff really matters does it?

Re: EPR - OK. There is so much I don't understand about some of these settings and what they mean to breathing.
Re: sorting through the various options re: the mouth stuff. Yes this one is VERY frustrating because it's not about
my mouth opening at my lips as it was before CPAP. It seems to be the tongue dropping off the roof of my mouth. It's absolutely maddening. Though I think once that happens, if I haven't done lots of tape, cervical collar, Scuncis, then the internal drop will pull down a bad tape job and air then leaks through the lips. Does that sound right?

I was getting so that I didn't want to go to bed because all the tapes have been so painful, but I think the blue tape for sensitive skin might be the ticket. Thanks for the encouragement and rearranging my priorities again!

[bjhunt01]

Tweety: I have a question about your picture. Your bleep tape looks to be lower than mine under your nose. You can barely see the tape under my nose. So it makes me wonder if I'm putting the ports on a little too high although I use a mirror and carefully aim them over my nostrils. Is there something I might change or was just the angle of the camera?

I googled the Dr. Dakota collar. Very different from a cervical collar! Do people like that better or is that another YMMV thing?

Hi Barbara, I do the same thing with the mirror and aiming the ports over my nostrils, and that's just where it ends up. I do have a long thin nose--I have to trim some off the center parts where they overlap, or the top one overlaps onto the other port. I'm still experimenting with what I can trim where.

I use the Dr. Dakota because I have a prominent occipital bone (aka I'm an egghead), and the full cervical collar stresses the muscles on the back of my neck.

Hi Tweety: I have the same and trim the overlap between the ports. I believe a narrow nose contributes to my breathing problems. If I close my mouth and breathe through my nose very hard, my nostrils will collapse. Then we have the all year long Dallas, Texas allergies fun. I think I will order a Dr. Dakota. The cervical collar is a little thick in the back and pushes my throat forward. Thanks for the tips! I am really hopeful the blue tape will work for me too. I used it for the first time last night and getting it off this morning was totally different...no pain and no missing skin!

[bjhunt01]

I googled the Dr. Dakota collar. Very different from a cervical collar! Do people like that better or is that another YMMV thing?

Definitely YMMV. I have the one linked below. It's a cheap knock off of the Dr Dakota, I think. I put this on, got in bed and just tried to get comfy with it and understand how it works. In the late afternoon. Laid on my back and sides. Never made it to the big leagues. Been sitting in the supply drawer. Unused.

Send me a pm with your address if you want me to send it to you to.

https://www.amazon.com/dp/B079C7HFGZ/re ... gDbFV7T200

djams: I'll check the site and compare it to the Dr. Dakota. In what way did it not work for you?

[djams]

I googled the Dr. Dakota collar. Very different from a cervical collar! Do people like that better or is that another YMMV thing?

Definitely YMMV. I have the one linked below. It's a cheap knock off of the Dr Dakota, I think. I put this on, got in bed and just tried to get comfy with it and understand how it works. In the late afternoon. Laid on my back and sides. Never made it to the big leagues. Been sitting in the supply drawer. Unused.

Send me a pm with your address if you want me to send it to you to.

https://www.amazon.com/dp/B079C7HFGZ/re ... gDbFV7T200

djams: I'll check the site and compare it to the Dr. Dakota. In what way did it not work for you?

For me, less comfortable than taping. Too much bulk under my chin.

[bjhunt01]

Night before last, I forgot to put in the SD card until morning so got only a little data. Kicking myself because my other aps said I had a restless night so I'd love to know what was happening if anything with the CPAP although I got magnificent numbers. AHI 0.11 - whaaaahoooo!

Last night, I slept a long time catching up from the workshop sleep deprivation. I had the exact same "wiring" to my face and head as I did the night before and not so great numbers.

I don't know what to do or change. Is this normal?

[zonker]

Night before last, I forgot to put in the SD card until morning so got only a little data. Kicking myself because my other aps said I had a restless night so I'd love to know what was happening if anything with the CPAP although I got magnificent numbers. AHI 0.11 - whaaaahoooo!

Last night, I slept a long time catching up from the workshop sleep deprivation. I had the exact same "wiring" to my face and head as I did the night before and not so great numbers.

I don't know what to do or change. Is this normal?

i'd suggest leaving it alone and get a couple of nights further data. there is no way of knowing that the 0.11 ahi is real or just an artifact the software threw up.

[bjhunt01]

Night before last, I forgot to put in the SD card until morning so got only a little data. Kicking myself because my other aps said I had a restless night so I'd love to know what was happening if anything with the CPAP although I got magnificent numbers. AHI 0.11 - whaaaahoooo!

Last night, I slept a long time catching up from the workshop sleep deprivation. I had the exact same "wiring" to my face and head as I did the night before and not so great numbers.

I don't know what to do or change. Is this normal?

i'd suggest leaving it alone and get a couple of nights further data. there is no way of knowing that the 0.11 ahi is real or just an artifact the software threw up.

Hi Zonker - My software throws up??? I thought I was the only one throwing up!

I noticed on kittyk4y's post, you said, "you need to do what you can do to take charge of aerophagia. even if it means having not sterling numbers. i went through quite a bit of this for a number of years. for ME, i ended up keeping the min low and ever so gradually raising that minimum.

also, are you using the EPR setting on your machine?"

I'm curious since we have the similar problems, and I know mine would not be the same as yours, but what is your minimum and maximum now and what # on the EPR do you use? Thanks!

[zonker]

Hi Zonker - My software throws up??? I thought I was the only one throwing up!

I noticed on kittyk4y's post, you said, "you need to do what you can do to take charge of aerophagia. even if it means having not sterling numbers. i went through quite a bit of this for a number of years. for ME, i ended up keeping the min low and ever so gradually raising that minimum.

also, are you using the EPR setting on your machine?"

I'm curious since we have the similar problems, and I know mine would not be the same as yours, but what is your minimum and maximum now and what # on the EPR do you use? Thanks!

it throws up when it sees those high ahi numbers.

currently, i'm using a minimum of 15.4 and max of 20. and believe me, if anyone had told me even a year ago that i'd be doing a min of 15.4 someday, i would have called them a liar. it amazes me now that this is what i use. and i'm thinking of raising it more just to see what improvements i can make.

epr is yet another odd story. the short answer is my epr setting is three.

the long answer is that i didn't "take" to epr at first. it seemed to me, rather than making my exhaling easier, it was actually making it harder. like it was having the opposite affect on me.

i ended up doing ALL kinds of crazy number combinations with min and max and epr settings. i can't even begin to tell you how i broke through. but eventually, i got to epr of three. once i got over the aerophagia hump, i found that i could slowly raise my minimum number.

at one time, even a min of 7 was too much. but i slowly cranked it up.

i wish i could tell you there was some magic SOMETHING i did. but, no. just kept at it doggedly until i broke through.

i bet the same thing is going to happen to you.

[bjhunt01]

Hi Zonker - My software throws up??? I thought I was the only one throwing up!

I noticed on kittyk4y's post, you said, "you need to do what you can do to take charge of aerophagia. even if it means having not sterling numbers. i went through quite a bit of this for a number of years. for ME, i ended up keeping the min low and ever so gradually raising that minimum.

also, are you using the EPR setting on your machine?"

I'm curious since we have the similar problems, and I know mine would not be the same as yours, but what is your minimum and maximum now and what # on the EPR do you use? Thanks!

it throws up when it sees those high ahi numbers.

currently, i'm using a minimum of 15.4 and max of 20. and believe me, if anyone had told me even a year ago that i'd be doing a min of 15.4 someday, i would have called them a liar. it amazes me now that this is what i use. and i'm thinking of raising it more just to see what improvements i can make.

epr is yet another odd story. the short answer is my epr setting is three.

the long answer is that i didn't "take" to epr at first. it seemed to me, rather than making my exhaling easier, it was actually making it harder. like it was having the opposite affect on me.

i ended up doing ALL kinds of crazy number combinations with min and max and epr settings. i can't even begin to tell you how i broke through. but eventually, i got to epr of three. once i got over the aerophagia hump, i found that i could slowly raise my minimum number.

at one time, even a min of 7 was too much. but i slowly cranked it up.

i wish i could tell you there was some magic SOMETHING i did. but, no. just kept at it doggedly until i broke through.

i bet the same thing is going to happen to you.

Thanks - your answer believe it or not was really helpful! I still feel like I'm in the dark understanding a lot of this stuff, but I keep reading posts and other information and asking questions - so I hope as you say that will happen to me!

[zonker]

Thanks - your answer believe it or not was really helpful! I still feel like I'm in the dark understanding a lot of this stuff, but I keep reading posts and other information and asking questions - so I hope as you say that will happen to me!

i'm VERY happy to help. and if you think *I* understand this stuff, well, that's just plain wrong!

i'm just repeating what i've heard here and mixing it with my own experiencing.

if my experience helps someone, then that makes me glad.

[djams]

Night before last, I forgot to put in the SD card until morning so got only a little data. Kicking myself because my other aps said I had a restless night so I'd love to know what was happening if anything with the CPAP although I got magnificent numbers. AHI 0.11 - whaaaahoooo!

Last night, I slept a long time catching up from the workshop sleep deprivation. I had the exact same "wiring" to my face and head as I did the night before and not so great numbers.

I don't know what to do or change. Is this normal?

It is very normal for sleep to vary from night to night.

The version of sleepyhead you're using does not import summary data accurately. Always reports AHI lower than the real AHI MyAir will show you the correct AHI for the night you forgot to put in the SD card. Would recommend getting OSCAR.

If you're itching to change something, switch over to normal APAP mode. It won't make a bit of difference in AHI because your pressures aren't optimized. But it would be interesting to see what the FL chart looks like.

BTW- I know exactly how you feel when you forget the SD card. Used to just kill me when I was tweaking things.

Hang in there. You'll get there. Takes time and unfortunately, patience.

[bjhunt01]

Well this looks a lot better meaning way less leaks. Yah! Flow limit still looks bad. In spite of a lot of sleep and good numbers I feel like a truck ran over me. Tired and I have a headache which I haven't had in quite awhile. I think my allodynia head is commenting on the Scunci's. Or might be because I ate badly yesterday with very little protein. Who knows.

I will do as suggested and collect a few more night's data with these numbers but if anyone sees anything to suggest, please do! Everyone have a great holiday!

Oh a weird PS: I have a sleep number bed. It always reports that I'm half dead during the night, i.e., that my heart rate is 55 and below. The last few nights it's reporting it to be around 65. And also that I am breathing more. My average is 15 breaths per minute and lately it's gone up to 17.

[bjhunt01]

Night before last, I forgot to put in the SD card until morning so got only a little data. Kicking myself because my other aps said I had a restless night so I'd love to know what was happening if anything with the CPAP although I got magnificent numbers. AHI 0.11 - whaaaahoooo!

Last night, I slept a long time catching up from the workshop sleep deprivation. I had the exact same "wiring" to my face and head as I did the night before and not so great numbers.

I don't know what to do or change. Is this normal?

It is very normal for sleep to vary from night to night.

The version of sleepyhead you're using does not import summary data accurately. Always reports AHI lower than the real AHI MyAir will show you the correct AHI for the night you forgot to put in the SD card. Would recommend getting OSCAR.

If you're itching to change something, switch over to normal APAP mode. It won't make a bit of difference in AHI because your pressures aren't optimized. But it would be interesting to see what the FL chart looks like.

BTW- I know exactly how you feel when you forget the SD card. Used to just kill me when I was tweaking things.

Hang in there. You'll get there. Takes time and unfortunately, patience.

djams: what is "normal" APAP mode? I thought I was in APAP. I see three settings: CPAP, Autoset, Autoset for Her.
Also what does it mean/would it mean if my "pressures were optimized?"

[Dog Slobber]

djams: what is "normal" APAP mode? I thought I was in APAP. I see three settings: CPAP, Autoset, Autoset for Her.

I think what djams means regarding normal APAP mode is AutoSet and not AutoSet for Her mode.

Your machine is in AutoSet for Her mode, I don't use for Her mode so can't really comment. I believe for Her mode is gentler and after detecting two apneas within a certain timeframe can lock in a new minimum for the rest of the session.

I also think that Pugsy uses for Her mode and her guidance (as usual) is invaluable.

Also what does it mean/would it mean if my "pressures were optimized?"

Typically, when people refer to pressures being optimized, they are talking about having ones machine's pressure being set to deliver the best therapy possible (minimal events).

And that's the long term goal for you. But, your therapy is a little bit more complicated because we want to find the best therapy, recognizing your aerophagia and leak issues. So initially we're walking a gentle line trying to find a good compromise of treating your events, but reducing leaks and aerophagia.

Great job on the leaks, hopefully that's taken care of and don't get discouraged on the occasional bad leak night.

Keep it up.

[bjhunt01]

djams: what is "normal" APAP mode? I thought I was in APAP. I see three settings: CPAP, Autoset, Autoset for Her.

I think what djams means regarding normal APAP mode is AutoSet and not AutoSet for Her mode.

Your machine is in AutoSet for Her mode, I don't use for Her mode so can't really comment. I believe for Her mode is gentler and after detecting two apneas within a certain timeframe can lock in a new minimum for the rest of the session.

I also think that Pugsy uses for Her mode and her guidance (as usual) is invaluable.

Also what does it mean/would it mean if my "pressures were optimized?"

Typically, when people refer to pressures being optimized, they are talking about having ones machine's pressure being set to deliver the best therapy possible (minimal events).

And that's the long term goal for you. But, your therapy is a little bit more complicated because we want to find the best therapy, recognizing your aerophagia and leak issues. So initially we're walking a gentle line trying to find a good compromise of treating your events, but reducing leaks and aerophagia.

Great job on the leaks, hopefully that's taken care of and don't get discouraged on the occasional bad leak night.

Keep it up.

Dog Slobber: Thanks for your information and reply. It's amazing to me that you remember what I'm working with when you respond to so many. Much appreciated. Have a great holiday!