TiredGal's - Therapy Thread

[Llort]

I'm really new, myself, so I'm probably not much help, but maybe a comment will help bump your thread.

I'm curious what your pre-treatment AHI was. Just looking at your current AHI, most people would think your treatment is working out great if they didn't know about your not feeling well rested. I would wonder if you could keep gradually lowering your pressures until you start seeing OAs again.

I wonder if you have other issues with your sleep quality (are you getting enough N3 and REM? do you have hypnic jerks or something else disrupting your sleep pattern?). I know some people have filmed themselves overnight to see how often they're waking or whether they're getting restless sleep.

I hope you find some answers, and let us know how it goes.

[OpalRose]

TiredGal,
I have merged your two threads and renamed it:  TiredGal's - Therapy Thread

Please keep your charts and questions to this thread to keep your history in one place and thus avoids duplicate advice.  Thanks.  

[TiredGal]

Hi! I tried min 7 & max 7 pressure last night, with ramp on for 25 min.  Oscar data attached.

I woke after about 40 min, then after an hour and then after another hour - after the 1st or 2nd wake up (I can't remember), I put ramp to Auto cause I wasn't feeling that great.  I usu have ramp off, but know 7 is a lot for me.  

I woke with a headache and sore/dry throat - I don't usu have that.

I usu have 0 OA, but had .9 OA.

Does this new data help point us in the direction of what to try?

I gave up after the 3rd wake up and slept sitting propped up in bed.  Ironically, then I slept straight through for 3.5 hours.  This is how it typically goes for me.  I make it a few hours using the machine - getting woke up every hour.  Then I give up and sleep sitting up and sleep for 3 hours (with no wake ups).

Makes me wonder if that's the better "plan," but then I worry that the machine is prob the best for my long term health, so I try again.

Any advice?  

Thank you!!!

P.S.  In the string above, there is Oscar data for pressures of 6 & 7, 6 & 9, 6 & 10 for comparison if that helps.

[TiredGal]

Hi Llort!

So sweet of you to reply and try to get me some traction (you could prob sense my desperation dangling out there without replies) - LOL.  

OpalRose replied with some assistance on the technical stuff now, and you and UPSMan helped with some emotional support - so, HURRAY, I'm no longer dangling...Ha!

With respect to your questions, I have a sport watch I wear overnight that gives me sleep data regarding REM, Deep Sleep, and ANS info. and it says I'm getting a fairly good amount of REM and Deep sleep - but that's because I sleep half the night without the machine.  The longest I ever have stayed asleep with the machine is about an hour.  

My at home sleep study was kind of a mess.  The finger oximeter/pulse thing was gripping SO tight on my finger (and I have small hands, short fingers) so the plastic was digging/cutting into right above my knuckle and all night I was messing with it, trying to move my finger around to get some relief, and couldn't sleep at all.  Then, I started panicking about that.  Ultimately, I pulled the finger piece a little too hard and my finger started to pull out of it, along with the sleeve inside it, so I quickly tried to shove my finger back in.  Ugh.  You get the idea.  Not good.

Plus, I was always a back sleeper so I slept the entire night on my back.  My results came back as mild sleep apnea - 14 AHI's.  Guess that's almost moderate.  

Now I'm wondering what the results would have been if I slept only on my side, like I do now.  Maybe I could fix this by sleeping on my side, with a neck collar.   ???

My dr says they don't do another test so quickly, so I'm trying to do exactly what you suggested - trying to find the lowest pressures that control the apneas and provide enough comfort I can sleep.

Not sure if you are going through something similar. I hope things are going well for you!

[Llort]

Oh, how frustrating that you can't stay asleep with the CPAP. My AHIs would be very different if I only captured the first 40 minutes of sleep (my CAs get denser as the night goes on). It's clearly not mask leaks waking you up.

I wonder if you do have positional apnea and side sleeping with a collar would help -- I'm certainly curious what the experienced folks here would say.

I've been using a Wellue O2 Ring to capture pulse and oximetry data. It's another layer of data to help me see how well (or poorly) I've been sleeping. I can see the O2 go down and pulse go up when I'm not using the CPAP or when I'm having a lot of CAs and hypopnea. I'm able to export the data from my phone app and import it to OSCAR. Your AHI on CPAP is so low that I think it's hard to tell what's an actual treatment effect and what's a blip -- maybe the experts here can tell based on something else, like the flow limitation data? On the other hand, the pulse oximetry data may show clearer differences between good and poor sleep that will help you adjust the settings. Just throwing out ideas.

I've been using a CPAP for about 40 nights, and I'm still about 7-10 AHI from central apnea and hypopnea. I was getting very frustrated. Fortunately, the sleep center recently agreed to schedule me for an overnight study with an ASV titration, so I haven't given up hope yet. Good luck on yours -- I'm sure it's frustrating to have good looking numbers and crummy sleep.

[Gideon]

I have just reviewed this thread.
Based on the clustering of the flow limits I think you are having a form of positional apnea, one that is primarily caused by your tucking you chin into your chest. What is unusual is your total lack of events.

Tell us about your bed and Pillow arrangement.

Tonight modify your pillow, use 1 vs 2, a softer, flatter, less firm. The end goal is to keep your neck straight.. if that doesn't work I'd like you to try a well fitted soft cervical collar, see my signature.

Next I'd like you to do a simple experiment as a demonstration of pressure.

Get a tall glass of water and a straw. Place the straw in to very near the bottom. Now the hard part, Blow Bubbles. I know, just do it.





Ok, any issues or problems? Didn't think so. Assuming 8 inches of depth you just exhaled against the highest pressure your CPAP can produce, 20 cm of water.

The point is that this is a very, very low pressure device.
I'm not saying you don't have problems but I do want to change your perception of the pressures involved.

pressure problems typically manifest as aerophagia, air in stomach.

Is airflow the problem, many mistake flow for pressure. Your issue with pressure is not that it is too high but that your flow limits are driving it higher than you need it for comfort.

My preference for max pressure is 20, the machines max, and with everything well managed, including your flow limits it wi) never get close. But for you we may need to eventually get you in a very narrow band if we cannot resolve your flow limits.

For now set
Min =7
Max=10
EPR=3

And let's see what your pillow mods net.
Pre#ure hitting 10 is currently just a signal that your flow limits are not yet managed.

[TiredGal]

Hi Gideon,

First of all, thank you so much for helping me.  I hope to start sleeping better in 2023 - MARCH of 2023 would be nice!  LOL

I think you're on to something, as I tried min 6, max 7 pressure last night, EPR 3, ramp off, and I didn't have any better luck sleeping and my sport watch "agreed" with me that my ANS/HRV, breathing, etc. was all "off".  

I've been trying to better understand what the sensations I'm feeling are and maybe all this time I've been thinking I'm struggling with too much pressure, maybe feeling like I'm breathing more or faster than I usually would and sort of struggling to breathe, can't get the rhythm  - isn't too much pressure, maybe it's my body trying to get "more" air and needing higher pressure?

That said, when I tried min pressure of 7 before - it felt like too much air coming in, but maybe I just need to get used to it? 

When I increased max pressure to 10, and even 12 for a while, I started getting stomach aches from swallowing a lot of air but, again, maybe I just have to get used to it.

I'm glad you commented on how I never have any events - regardless of min/max pressure!  That seems so odd to me.  I had read before to keep reducing pressure until you start getting apneas and then you'll know what pressures to use, but I can go all the way down to 5 and 5 and I still never get any events.  I'm thankful, but also baffled.

I slept on my back the entire time during my sleep study, and now only sleep on my sides so maybe I just don't have sleep apnea as much now?

In addition to that,  I've wondered if I just have a narrow airway and gaining some weight has made it even more narrow so as soon as I put the mask on it immediately goes up to whatever max pressure is set because it "senses" restricted air and wants to prevent apneas, but that it really doesn't need to go there as I don't have any events no matter how low the pressure.  Think that could be happening?  If so, what do you suggest?

I've noticed it seems like the lower my flow limitation number is the higher my resp rate is so I wonder if that means I'm breathing extra fast from that sensation?  I read here that it's supposed to be around 1.0 - or maybe even a little lower - (mine is always higher, as you mentioned) so I think that's why you're suggesting increasing max pressure to 10 to help with that.

You suggested min 7, max 10 w/EPR 3, so I'll try that tonight - unless the attached Oscar data from last night changes your mind about anything.  Or maybe, more likely, it helps further confirm what you're suggesting?  I know it will go straight up to 10 right away and will stay there all night - never come back down.  So much for an APAP machine - it's kinda lost on me, it seems, as it doesn't go up and down.  

I know the last couple nights when I tried 6 & 6 and last night 7 & 7, that it's more like a CPAP and, of course, the pressure will go up and stay up, but it does it no matter what settings I choose. If I choose 6 and 10, it will stay at 6 only a minute or so (unless I use ramp) and then go up to 10 and stay there until I turn it off, never comes back down.

You're spot on with the straw test.  Point well taken.  LOL  

Previously, I tried using two pillows, as I read a lot about elevating my head being helpful, but then I read on this site about chin tucking and I do know I definitely do that, so I went back to my flat pillow a week or so ago.  I ordered a neck collar a couple days ago and it should be delivered today, I hope, and I can try it.

THANK YOU, again!

[TiredGal]

One last thing...

I reread your message and forgot I wanted to ask if you could explain what you mean when you say the machine going to 10 and staying there shows that my flow limits are not yet managed?

Does it mean my body wants to go to 11, or to 12, but since I cap it at 7 or 8 or 9, or maybe 10, it feels "limited" as it wants to go higher?

The reason I cap it is I don't get events at lower max pressures either, and the higher pressures 10-12 were giving me a lot of air swallowing - But maybe if I don't put max pressure that high, I'm not going to sleep better?

[Gideon]

It means that you are having sufficient flow limitations to disrupt your sleep and your therapy is not sufficiently optimized to manage your flow limitations and thus minimize the disruption.

Thus limiting max to 10 acts as a flag that something needs to be better managed.  In most users the max can be set to the machines max of 20 and they will never go anywhere near that pressure.

With a Philips APAP your option, only option is to increase pressure in an attempt, that most likely will not be effective, to manage your flow limits.  Most likely you would not see this pressure increase because Philips algorithm does not respond to flow limitations but rather responds to snores.  ResMed does respond to flow limitations by increasing pressure but flow limits are much more responsive to the pressure difference between inhale and exhale (EPR) or commonly known as PS/Pressure Support on a BiLevel.  It is also possible a positional issue which is often addressed outside of the pap system.

If you want to set Max to lower than 10 to prevent aerophagia I have no problem with that.
I'll often set Max to below a users optimum therapy levels to immediately manage aerophagia then very slowly increase pressures back to therapeutic pressures.

[TiredGal]

Hi again…

I just did some additional reading about “flow limitations” I found on this site and on Google.  I think I have a little better understanding now what you were saying - about my narrow airway/chin tucking causing the machine to want to go up has high as possible and stay there all night, so the hope is a flat pillow and maybe a cervical collar helps prevent that. 

Guess how it pertains to comfort and not waking me up so much is…

1) if it’s trying to increase and can’t, it means I prob do need more air so I wake up at those times…whereas if I wasn’t tucking my chin, the air could flow easily and likely wouldn’t even go as high and I’d stay asleep.  And…

2) when I have max pressure set high (like before when I tried 10), and hadn’t resolved chin tucking the machine goes all the way up fast and stays there blasting way too much air and then that wakes me up, too, with a sore stomach and a feeling I need to turn the machine off and start over again with ramp on.   

Am I starting to get it?

Still not sure why I don’t have any events, no matter what settings.  That’s a head scratcher, but a good problem to have.  Will see if I get RERA’s or centrals from too much air pressure tonight.  

Maybe I don’t have sleep apnea when I sleep on my side.  ???