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Newly diagnosed with lots of centrals and feel suffocated
#1
Exclaimation 
Newly diagnosed with lots of centrals and feel suffocated
Hi folks. I'm new here. Diagnosed with mild OSA (AHI 12.4) with an at-home sleep study, got my Airsense 10 on August 10, 2021. I sleep with a big U shaped body pillow and alternate each side with being on my back. I did the positional apnea test (chin tuck does obstruct my breathing somewhat as does pushing on the soft tissue just in front of my throat). I've only tried a soft collar one night but felt claustrophobic so took it off, but will try it looser tonight. I have trouble breathing through my nostrils but I also don't breathe through my mouth! And I rarely snore.

Without the CPAP, I slept restlessly. With the CPAP, I sleep even more restlessly. And some nights I wake up feeling like I'm suffocating with the CPAP on and only feel I get good sleep without it. However, I wear an Oura ring and know that CPAP is the only thing that gets me precious, restorative deep sleep. On good nights with the CPAP I wake up feeling refreshed and full of energy. So I am determined to figure this out.

I have tried MANY masks, in order: QuattroAir (DME started me with), AirTouch F20, AirFit F30, AirFit F30i, Dreamwear Nasal Cushion and Full Face, DreamWisp nasal and the Resmed nasal, ResMed N30i. Currently I'm using a ResMed N30i with mouth tape, as if I don't use mouth tape the pressure will blow the air out of my mouth during the night. This is the best mask I seem to have found so far. The Dreamwear nasal wasn't the right shape and the silicone would block my nostrils.

The nasal and full-face masks are extremely uncomfortable on my sinuses the next morning (pain all the next day, worsened over stretches of days to the point of unbearable) and the F30 and F30i and Dreamwear Full Face would leak a lot in the middle of the night somehow - mouth dropping open or chin dropping back? I think again the pressure would blow my mouth open and then I'd mouth breathe.

To add to the fun, I have Sjogren's Disease and hypermobile Ehlers-Danlos Syndrome. So I think I have UARS which is common with hEDS. I also might have craniocervical instability, and am 6 months post-op from tethered cord release surgery.

The Sjogren's means that my nose and mouth are pretty dry to start with. I did get a heated ClimateAir tube and set humidity to 5 and that helps. And the mouth tape helps. However, I'm allergic to silicone, so now I have red marks on my skin from where the nasal cushion touches. Tried lanolin, then I get acne. Dont-know Oh I also have a very small head so I use the ResMed N30i with a small frame and small wide cushion, though M cushion also works, so does S but I don't get as much air.

I use azelastine, an antihistamine nasal spray, and Xlear nasal spray before bed because I do feel I have some issues with my nose and/or sinuses blocking my breathing somewhat. I have an ENT appointment at the end of this month that I've been waiting for since August.

I never had an in-lab study because the requirement was lifted bc of covid. The sleep center my PCP sent me to says if I want one, I'll have to pay out of pocket. My PCP is at a loss and doesn't seem to know a sleep doctor who can help me. The sleep center, I never actually saw a physician. Did everything via mail and had one visit to the office to pick up the machine and a mask, was told I'd never get used to it and with my mild numbers I may as well not try to treat it (by the center director!).

My study showed no centrals, but some nights, I have tons of centrals and some hypopneas. The rare RERA. My flow curves are extremely jagged if I zoom into a two-minute view.

I'm going to attach my sleep study and a few representative nights, good and bad (sometimes one night to another with no rhyme or reason!). If you'd like a different screenshot with things zoomed in, just let me know.

I'm wondering what my next best step would be. I haven't messed with my settings at all; it is just how the sleep center set it up for me.

Thank you in advance! I've been reading here and trying to get up to speed. Sorry, I have to start dinner but I just noticed my chart is in the wrong order. I reordered them and I don't know how tidal volume snuck up there.


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#2
RE: Newly diagnosed with lots of centrals and feel suffocated
Welcome to the board, there are a lot of very knowledgeable people here that will help.

The reason you are suffocating is your min is to low. I need 9 to 10 not to feel that way. 

I would suggest 2 changes. 
Min 8
EPR 1

If you still fill like you need more air increase the min setting. 

I think that should make much more comfortable. 

Please download OSCAR from the top of the site it is totally free. I have a link to charts (last link in my signature) that explains OSCAR.
Apnea (80-100%) 10 seconds, Hypopnea (50-80%) 10 seconds, Flow Limits (0-50%) not timed  Cervical Collar - Dealing w DME - Chart Organizing
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#3
RE: Newly diagnosed with lots of centrals and feel suffocated
(11-03-2021, 06:57 PM)staceyburke Wrote: Welcome to the board, there are a lot of very knowledgeable people here that will help.

The reason you are suffocating is your min is to low. I need 9 to 10 not to feel that way. 

I would suggest 2 changes. 
Min 8
EPR 1

If you still fill like you need more air increase the min setting. 

I think that should make much more comfortable. 

Please download OSCAR from the top of the site it is totally free. I have a link to charts (last link in my signature) that explains OSCAR.

Thank you so much! I did download OSCAR. Can you see the OSCAR screenshots I attached to the first post?
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#4
RE: Newly diagnosed with lots of centrals and feel suffocated
Just do a reply and keep this thread your record so everyone can see and reply.

I did see it the charts that are in my signature will help if you can put them in order.
Apnea (80-100%) 10 seconds, Hypopnea (50-80%) 10 seconds, Flow Limits (0-50%) not timed  Cervical Collar - Dealing w DME - Chart Organizing
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#5
RE: Newly diagnosed with lots of centrals and feel suffocated
(11-03-2021, 08:06 PM)staceyburke Wrote: Just do a reply and keep this thread your record so everyone can see and reply.

I did see it the charts that are in my signature will help if you can put them in order.

Thanks. I tried to do it the way you had it in your signature but messed it up and didn't realize until after it was uploaded. Any way to remove those so they don't count against my 5MB? I realize the edit function disappears after an amount of time or something?

here are two nights - a good one and a bad one. Even on the good night I'm suffocating.

I will try those settings tonight unless you have a different suggestion after seeing these. I will also try the soft cervical collar and I just got a Wellue O2 ring so I will try wearing that as well tonight and importing into OSCAR tomorrow.

Thank you so much! I am so grateful to be here. I've been reading and trying to absorb some info which has gotten me this far at least. I should say with the Sjogren's and hEDS (and possibly bc of apnea!) I also have some brain fog so learning all this new info is a bit overwhelming at times.


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#6
RE: Newly diagnosed with lots of centrals and feel suffocated
(11-03-2021, 06:28 PM)bodhimama Wrote: My flow curves are extremely jagged if I zoom into a two-minute view.

This one made me perk up my ears -- and then I saw a sliver of your respiration rate curve in this shot:
   http://www.apneaboard.com/forums/attachm...?aid=36854

I have this thread where I talk about this: http://www.apneaboard.com/forums/attachm...?aid=36854

First of all -- your respiration rate is probably not 45 like the graph says -- that's probably almost as fast as is humanly possible. (I can tell you that a ResMed machine won't record a respiration rate more than 50, because the engineers who wrote the software know that it's ridiculous and wrong.) What I see, and it sounds like you are seeing, too, is that your flow rate curve is bouncing around wildly. Look at my pictures in my thread, and compare to your OSCAR zooms -- are you seeing in your breathing what I'm seeing in mine? What I see is that the machine is utterly bewildered by what it sees, and the air is ping-ponging around so badly that the machine can't tell whether I'm inhaling or exhaling!

So bring that Oct 31st respiration rate curve up and take a screen shot so that we can see the whole night. Then grab a 2-minute zoom around 1:30 or so.
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#7
RE: Newly diagnosed with lots of centrals and feel suffocated
(11-03-2021, 11:56 PM)cathyf Wrote: This one made me perk up my ears -- and then I saw a sliver of your respiration rate curve in this shot:

I have this thread where I talk about this:

First of all -- your respiration rate is probably not 45 like the graph says -- that's probably almost as fast as is humanly possible. (I can tell you that a ResMed machine won't record a respiration rate more than 50, because the engineers who wrote the software know that it's ridiculous and wrong.) What I see, and it sounds like you are seeing, too, is that your flow rate curve is bouncing around wildly. Look at my pictures in my thread, and compare to your OSCAR zooms -- are you seeing in your breathing what I'm seeing in mine? What I see is that the machine is utterly bewildered by what it sees, and the air is ping-ponging around so badly that the machine can't tell whether I'm inhaling or exhaling!

So bring that Oct 31st respiration rate curve up and take a screen shot so that we can see the whole night. Then grab a 2-minute zoom around 1:30 or so.

Thank you! FYI that 2nd link went to my screenshot again but I found your thread. (Sorry, but I had to take the links out above because I don't have enough posts to post links?? Even in quotes apparently.

Here's: last night, with SpO2 data from the Wellue O2 ring. And the 2 Oct 31st views you requested. Last night I changed EPR to 1 and min to 8, and it was better (less suffocating feeling), but I still took it off--you can see my O2 levels don't seem to be worse without the CPAP on! And I still had a bunch of central airway events.

Also last night I wore my soft cervical collar ALL night, even after I took off the CPAP mask.

Thank you for your help!


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#8
RE: Newly diagnosed with lots of centrals and feel suffocated
(11-04-2021, 09:12 AM)bodhimama Wrote: FYI that 2nd link went to my screenshot again but I found your thread. 

Oh-jeez  Here's that link. (Honest, I used preview!)
http://www.apneaboard.com/forums/Thread-...-your-data

(11-04-2021, 09:12 AM)bodhimama Wrote: ...the 2 Oct 31st views you requested...

Ok, interesting -- what I'm seeing in this picture: http://www.apneaboard.com/forums/attachm...?aid=36869 is not the same wildness that I see in my data. There is some very fast -- but still plausible -- respiration rate and then there are short segments that look like you changing position and things get wild, but that's something completely different. (Basically, it's not asleep breathing and yes it gooses the statistics, but looking closely at the zooms you can see that your breathing is not gyrating wildly over sustained periods.)
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