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Hi Sleeprider! My previous mask was the hybrid full face F30i so not really a nasal, but still has the nasal cradle. Do you think that the change to full face from hybrid would be the same difference as from a nasal mask?
I used to have EPR 3 when my pressure was 5-20, but I lowered it to 2 based on having a lot of CA events.
I was wondering about positioning too - I have a "soft" pillow and a harder memory foam pillow, and I usually use the memory foam one on top to hold my neck better but for some reason last night I did the opposite. The soft one seemed comfy with the full face mask. Tonight I will switch back and see how that goes.
I know I need to get in there and start playing with my pressures as well. Might do that tonight too and try your suggestion of 7-12.
Thank you so much for your help and advice!
An update... last week I was able to get in on a cancellation and see my ENT early. Without any leading from me, she reiterated what I have been told in the past about my nasal passage. Apparently it is just too small overall and straightening my deviated septum will only make things worse. "There is only so much real estate" is what she said. She noted that I do have turbinate swelling and a little spur in my right nostril, and major dryness and irritation, all of which is creating an even narrower passageway. Since I have recently had an infection, she recommended a few things to try before considering any turbinate reduction which she seemed to want to sway me against. She recommended Ayr nasal gel and a humidifier in my room as well as the one on the CPAP. She also told me to limit saline rinse to twice a day (I guess I was the rare patient over doing it on saline rinse). I'm going to try all this for a week or two and if I don't see enough improvement will push to find out more about turbinate reduction. Oh, she also recommended a nasal dilator which Jay51 had suggested earlier in my thread. I have tried two different types but find them so uncomfortable. Not sure they are for me.
Now, my tonsils. From 0-4 with 0 being you don't have tonsils and 4 being they touch each other, she graded mine a "3 going on 4". She is referring me to another ENT to consult on a tonsillectomy. She thinks that with my tonsils removed, I may likely not have severe sleep apnea anymore. The reason she is referring me to someone else is that she actually specializes in sleep endoscopy, and then depending on your obstruction refers you out for surgery. She told me she didn't need to perform an endoscopy to see that my tonsils are most likely the biggest factor in OSA for me.
She did not sugar coat the recovery for a tonsillectomy at 40 - excruciating pain for up to 6 weeks is what she said.
Any encouraging stories out there of having a tonsillectomy as an adult? Would love to hear them!
In regards to my CPAP use, my provider has now set me up on constant pressure 9 with ramp at 6. So far it hasn't been great, the first night I actually couldn't use it at all, it was like I reverted back to my initial panicked anxiety about CPAP, but I think I had just started to get used to the auto 5-10 I was on, and I want to give this new setting a little time before I make further changes. I spoke with the ENT about Oscar and changing settings myself, and she was surprisingly supportive. She told me she would change my prescription from what the sleep dr had given me if I wanted, but also told me she supports me to make small changes myself so long as I really try them out for more than a couple nights, maybe a week, before changing again. Right now I am kind of hating the ramp function but I can't tolerate a pressure of 9 right off the bat, so I think eventually getting back to an auto will be better for me. I will likely try 6-9 first and go from there. I have a feeling 7-10 is where I am meant to be.
For mask, my provider had loaned me a F&P Simplus while i was getting over my infection and since that was much better for me, they also extended my return policy on my resmed F30i and so I was able to exchange it and get myself a new F&P Vitera. I'm having some leak issues and the mask makes a bit of a whistling sound at times, but overall it is so much gentler on my irritated nose. Down the line I would love to be able to go back to the F30i because I did prefer the hose attachment at the top of the head and the smaller profile, but for now I have accepted the full mask.
Not adding any Oscar data today as I don't think I'm at a place to analyze yet. Hopefully in the next week or so I can get back to optimizing my therapy with Oscar.
Thank you to anyone who has any input or even just following along on my sleep saga with me! : )
What a journey! Thank you for sharing all that. Keep us updated.
Yes, ramp is a double edged sword. Especially because it goes on ramp again when we stop and start. There is a control for ramp pressure, usually in the settings for clinicians. What I have found helpful is to gradually increase both the low end of the ramp pressure to start higher and also reduce the time of ramp. This way the slope of the ramp is similar and feels familiar. When you don't notice small changes you can go to bigger instruments.
I've also found that relaxing my breathing patterns gives me a more supportive feeling flow from the machine. My anxious breathing seems to make it react.
Hi Lisa! What a journey is right! I know so many of us struggle after initial diagnosis and boards like this are such an important resource for both sharing and learning how to optimize our therapy. We also really have to be our own advocates. My sleep dr wouldn't even look at my tonsils - he was like nope that's not going to make a difference. I'm thankful I went to my family dr with my concerns, she didn't agree with the sleep dr and so she sent me to the specialist.
When I first started out I had my ramp at 4 because even starting at auto pressure 5 was too much for me. I was pretty quickly able to lower the ramp time from 30 to 20 to 10 mins and then off. I think I'm going through the same thing again and once I'm used to 6 I'll lower the ramp time and/or increase the ramp pressure until I'm eventually able to turn it off again. I don't like how the machine doesn't record anything that's happening during the ramp, I've had a couple nights with great looking AHI but that's because I had stopped/started several times in the night and all that ramp time is eating into my actual therapy.
I agree with you about relaxed breathing, I definitely have a worse night if I'm anxious or overthinking my breathing. When that happens I try to focus on my feet to get my mind off my breath - I literally pretend I am lying on a nice beach somewhere exotic digging my feet into the sand. It helps lol!
Hi folks, here is an update after a full week at fixed pressure 9 with ramp at 6 for 30 minutes. I've included oscar data from the last few nights.
I think overall, the pressure of 9 seems to be decent at controlling my events - not all of them though - and I also realize that during my ramp time there are some events that are happening that aren't being recorded so my AHI isn't really a true AHI at the moment.
I haven't been able to reduce ramp time yet, I can't seem to initially fall asleep with the pressure raising too fast or with a starting pressure above 6. I am also still not sleeping through the night, I'm still getting little chunks in and then feel like I have to take a break from the cpap a couple times through the night. This of course increases the amount of time I'm in ramp.
I think I am now ready to try another auto setting, and thinking of starting with 7-9 or 7-10 with a 10 minute ramp at 6. My thought process is that the pressure will still start out low enough for me to fall asleep, but after 10 mins will raise if I have events and therefore give me a more thorough therapy?
I definitely have more leaks these days with the Vitera mask (see March 5 oscar), but I think I have fitted it a little better the last couple of nights and now the leaks that are showing are explainable to me (for example if I had an itch and fiddled with my mask, or at 6am my alarm goes off to take a pill and instead of stopping/starting I've just been opening my mask for a minute to take it). I included a close up of 6am last night because I just thought it was interesting to look at - this isn't really an RERA, it is my alarm waking me up.
So...any thoughts on going back to auto but with a smaller range? Does 7-9 or 7-10 seem like a good place to start at this point? Right now my EPR is at 2 and that seems to be comfortable - I had it at 3 back when I was starting out and took it down because I was having a lot of CA's. But now I am having flow limits - should I try 3 again?
Any advice on getting used to keeping the machine going all night, or at least putting it back on more quickly?
Thank you everyone!!
That sounds like progress. I do think it would be worth trying with a range. If you keep EPR 2 I would do 7 to 10 because you want the range to go a little higher than the fixed pressure as well as a little lower.
I think you probably need the EPR 3 as well. When I looked in your zoomed in events, your flow rate was reduced before your events, an EPR3 might help that. But that will lower your exhale pressure so you would want to shift your range slightly. Maybe 10-15 minute ramp (start at 7 if you can to account for the higher EPR, that will be the same exhale pressure as 6 with epr2), EPR 3, and a range of 8 to 11.
Machine: Lowenstein Luisa Mask Type: Full face mask Mask Make & Model: Resmed Quattro FX Humidifier: separate F&P humidifier CPAP Pressure: Epap 4-20 PS 4-20; "auto" rate CPAP Software: Not using software
Other Comments: Using 45 degree angle upper body wedge (36"x36") and 4.5"soft cervical collar; 500 assured tidal vol
Great job Sarah, continuing with the experiments. Some people here have had some success using Breathe Right strips (or equivalent). They can help open the nostrils a little bit also. I am not sure if you have tried these yet?
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I stayed with my current settings last night and tonight I’m going to start at 7-10 with EPR at 2 just so that I’m making one change at a time, we’ll see how that goes for at least a few days and then I’ll try 8-11 with EPR 3.
Jay, I’ve used the breathe right strips before and they were okay. The ENT I saw did say these can work if you can’t tolerate the dilators. I’ve been looking at the brand ‘hostage tape’ (terrible brand name), they make a nose strip that looks easier to use as it doesn’t have the hard metal bits (I think). Might be better for use with a cpap mask?
Hi folks, here is an update with my oscar data from the last two nights, I tried 7-10 keeping EPR at 2. I managed not to use ramp at all. The first night was ok… I had a pretty similar AHI as I've had at set pressure 9. I still stopped and started a few times, but surprisingly I didn't actually have any flagged events in the first 30 mins of any session anyways, so maybe I’ve been overthinking that I was missing out on therapy by using ramp. Pressure did go to up to 10 in response to flow limits. This was also true when I was trying 5-10, and the CPAP Provider still thought it was best to round down to 9 when setting the pressure. I do recall waking up this night and looking at the machine and seeing 10 and feeling it wasn't the most comfortable. I also think I had some positional issues around the 4:40 mark as I recall waking up and feeling like my left side of my body was super sore. I've been trying to stay on my left side so as to keep my right nostril as open as possible, but last night I do remember thinking 'eff it' and rolling over to my right side. That was shortly before my 6am alarm (which is showing as 5am in oscar data because of DST). Last night was a totally different story – I fell asleep but when I woke about an hour later, I felt super light headed and like the pressure was too high. It made me super anxious and every time I tried to use the cpap the rest of the night I was just totally in my head and couldn’t get enough time in to fall asleep again. I gave up after a few hours of getting up, walking around the house, bugging my cat, etc. I could have just had an off night last night but I am definitely hesitant to try 8-11. I think it’s going to feel too high and my goal is to stay asleep for longer chunks, and hopefully eventually sleep through the night. It's been a long couple months trying to figure this thing out! Wondering if I’m actually better off to stay at a set pressure of 9 and put my focus on getting used to a shorter ramp time? Not totally sure how EPR comes into play. Would love any input or expertise! Thank you!
Let's see what Jay says, but it's be inclined to try EPR 3 without increasing the upper limit. You could use 7 min still, or use ramp starting at 7 with min 8 so you still have treatment when ramp is on but gives you time to adjust. The ramp also makes it so you won't jump straight to high pressure, I believe.
