UARS - Concerned about flow limitations - where to go from here??

[jekettex]

Hello everyone

I was diagnosed with UARS in 2016 (I've probably had it much longer tbh). Been on CPAP since 2018 which has sort of kept things under control but usually have 3 - 4 rough days a week and I still have symptoms even on my 'good days' - it's just I'm well enough to be productive(ish).  I'm sick of either feeling garbage or meh. I really feel CPAP has only been partially effective in treating my symptoms and I want to see if I can optimize it to improve my condition.  Recently, I had a string of days where I felt *fantastic* and I could tell I slept properly. I felt restored, my memory/cognition issues went, and my mild depression lifted. Really sorry if TMI but on those days I had morning wood and I haven't in years. This happened as soon as I stopped using CPAP because of a head cold and lasted two weeks before severe UARS symptoms returned. I tried to recreate it by experimenting with different things during the period in which I felt better (e.g. breatheright strips, decongestants, allergy control, no pillow) but no dice. I wanted to mention this because I KNOW in my heart I can feel way better than what I'm used to and it's lit a fire under my butt to find a solution. 

Something else I feel is worth mentioning is I had masseter botox around this time as I clenched my teeth like a beartrap all night to the point it hurt and changed my face dramatically. When it kicked in a few weeks later my UARS symptoms became severe even with CPAP. I suspect keeping my jaw locked tight has played a role in stopping my symptoms from getting too bad and now that it falls slack while asleep it's causing problems. I've confirmed this by using a chinstrap/cervical collar but things are still far from perfect. My respiration rate dramatically changes when I sleep slack jaw compared to not and I wake up feeling truly heinous. I've attached an image to show this. 

Right now, I feel like I should stay on therapy as if I go off it I eventually end up way worse so I may as well have a go at making it better before I explore other options.
Up until now I've kind of engaged with CPAP therapy passively. I wasn't even aware OSCAR was a thing until recently.  I have for many years been on very low pressures ranging from 4-6 as I never really felt much benefit from going higher and suffer from aerophagia. I've included a random night to show what my charts usually look like. I've really started looking at my data and my flow limitations look pretty wild which indicates I should really try for higher pressures yeah? I slept last night with a straight pressure of 9 and EPR set to 3 (also included this chart). It seems like it reduced my flow limitations but they're still substantial and I think it introduced more clear airways. I did experience aerophagia as well so I'm nervous about going higher. Looking back on my data, I've always had quite intense, clustered FLs and it's my hope if I can find a way to get these under control I will feel better. If it will help I don't mind changing to a BiPAP.  I'd really appreciate people having a look at my charts and shedding some light on the situation! 

[TryingToGetItRight]

I also have UARS which responds somewhat to treatment with ASV PAP, but I know in my heart, just as you do, that I can do better!

I spent years obsessing over getting this right, and I burnt out on it and started working more specifically on other issues in my life, but recently, I've returned to working on my sleep.

Decongestant sprays and nasal dilation strips can be very very helpful.

I've read that aerophagia can supposedly be caused by limb movements, and I eventually did find an odd solution that reduced aerophagia enough to make treatment tolerable, but I still burp a bit!

Where I would start with if I were you would be getting a BiPAP or ASV device. I've read time and time again that even with EPR, basic CPAP really is not suitable for effective treatment of UARS.

[staceyburke]

You are having some of positional apnea.  You can see positional apnea where either H or Oa events are clustered together.  There are not a huge amount but getting rid of as many as you can will lower your AHI.

Positional apnea can NOT be controlled by pressure changes.  You have to find out what position you are getting into and cutting off your own airway.  Have you changed your sleep position?  Sleeping on your back?  Using more (or new) pillows?  These things can cause positional apnea by chin dropping to your sternum and cutting your airway.  Think of it of a kinked hose – nothing can get through – you have to unkink the hose…

IF you can’t make a simple change like changing to a flatter pillow helps then you will need a collar.  I have a link to collars in my signature at the bottom of the page.  It shows people who are not wearing a collar and the SAME person wearing a collar.  There is a huge difference between the two.

As far as the pressure I would try min 7 with EPR full time 3

Your centrals are mainly treatment emergent.  You need to get use to the higher pressure and EPR.  The centrals will diminish as your body gets use to the new settings.

[Negligee1136]

How can we be sure it's positional and not just REM? Would also be very common for everything to get worse in REM.

[jekettex]

I also have UARS which responds somewhat to treatment with ASV PAP, but I know in my heart, just as you do, that I can do better!

I spent years obsessing over getting this right, and I burnt out on it and started working more specifically on other issues in my life, but recently, I've returned to working on my sleep.

Decongestant sprays and nasal dilation strips can be very very helpful.

I've read that aerophagia can supposedly be caused by limb movements, and I eventually did find an odd solution that reduced aerophagia enough to make treatment tolerable, but I still burp a bit!

Where I would start with if I were you would be getting a BiPAP or ASV device.  I've read time and time again that even with EPR, basic CPAP really is not suitable for effective treatment of UARS.

Hello! 

I totally get you on the burning-out thing. I am single-minded in my goal to sleep better which can be good because without that desperation/drive I don't think I'd have as high a chance of improving this but it does put a strain on my life/relationships sometimes. 

Decongestant sprays can be very useful! I just wish they didn't come with rebound congestion otherwise I'd use them everyday. 

I'm long overdue for an actual in-lab sleep study so who knows, maybe they'll pick up something to do with limb movements. I'd love to know your aerophagia solution!

Almost certainly going for BIPAP I think. Just doing as much research as I can before I pull the trigger.

[jekettex]

You are having some of positional apnea.  You can see positional apnea where either H or Oa events are clustered together.  There are not a huge amount but getting rid of as many as you can will lower your AHI.

Positional apnea can NOT be controlled by pressure changes.  You have to find out what position you are getting into and cutting off your own airway.  Have you changed your sleep position?  Sleeping on your back?  Using more (or new) pillows?  These things can cause positional apnea by chin dropping to your sternum and cutting your airway.  Think of it of a kinked hose – nothing can get through – you have to unkink the hose…

IF you can’t make a simple change like changing to a flatter pillow helps then you will need a collar.  I have a link to collars in my signature at the bottom of the page.  It shows people who are not wearing a collar and the SAME person wearing a collar.  There is a huge difference between the two.

As far as the pressure I would try min 7 with EPR full time 3

Your centrals are mainly treatment emergent.  You need to get use to the higher pressure and EPR.  The centrals will diminish as your body gets use to the new settings.

Hi, thanks for your message.

I've thought a lot about positional apnea though I can't quit crack it. My current theory is it happens when my jaw goes slack but I need to alternate between chinstrap/no chinstrap a few more times to be sure. I have noticed I sleep terribly when I use thicker pillows. Currently, I'm not using any pillow and doing a lot better that way. I would love to use a collar but my forward head posture is so bad it puts a lot of strain on my neck so I'm trying to correct that first. I'm not sure if you'd have any insight on this but I've found breathing to be way easier when my head is in alignment vs forward. When it's forward my breathing is really shallow and my nose feels congested. I adjusted my mask straps to keep my head in alignment last night and I do feel markedly more rested today. My FLs look a lot better (still not great) as well. This could be coz I've switched to the evora mask though. One day isn't really enough to make any claims. 

Currently I'm on 9 EPR 3. Do you still think I should go to 7? How come? Also while I still have a fair few centrals they are less than they were a few days prior which looks to be good news.

[gainerfull]

How did you get a diagnosis of UARS? What did they measure and how did they come to that conclusion? I've been on a similar journey and currently experimenting with the lowest effective CPAP pressure with good results so far. Right now I'm sleeping on a wedge pillow and do a saline solution nasal rinse each night before bed as well as wash my F20 so I get a good seal.

What do your blood oxygen levels look like overnight?

[TryingToGetItRight]

I am not the original poster, but I ended up seeing several sleep specialists before getting a UARS diagnosis. It turns out that many of them just aren't looking for it.

UARS is diagnosed by looking at data about air flow and brain waves. Basically, they are generally looking for a "flattening" of the inspiratory breath on the flow graph combined with brain waves indicating an arousal. These events are called respiratory effort related arousals, or RERAs, for short.

It's a bit trickier than finding hypopnea and apnea events.

[gainerfull]

I am not the original poster, but I ended up seeing several sleep specialists before getting a UARS diagnosis.  It turns out that many of them just aren't looking for it.

UARS is diagnosed by looking at data about air flow and brain waves.  Basically, they are generally looking for a "flattening" of the inspiratory breath on the flow graph combined with brain waves indicating an arousal.  These events are called respiratory effort related arousals, or RERAs, for short.

It's a bit trickier than finding hypopnea and apnea events.

Did your RERAs get better on ASV? What was your titration & therapy experience been like thus far? Do you have your own therapy thread that I can learn from?

[TryingToGetItRight]

I just started using this forum several days ago. I started several threads describing my situation and asking for advice. I have received no response. :-(