Flow limitations (UARS)

[amouse]

Hi! I have been reading here for a little while, but this is my first post. I have extreme fatigue and other symptoms-- I have been tested for everything. SDB is not my only health issue, but my dentist believes it may actually be causing my other issues. I am not sure if there is room for improvement in my SDB, but I sure hope so because I would like to feel less awful.

I have UARS and I am a very sensitive sleeper. A while back, I got a two-week CPAP trial from a sleep doctor and found it super uncomfortable, so I was pulling it off after a couple of hours and feeling worse than without it. He retired before I could follow up and I got daunted and gave up on the whole topic.

I have decided to pursue treating my SDB again since I feel so awful. I am waiting for an appointment for a new sleep study ordered by a new sleep doctor. Meanwhile, I came into a ResMed Airsense 10 For Her and I am restarting my CPAP trial DIY while I wait. (I have done a ton of research and I feel comfortable going rogue, but I know it is not ideal. My rationale is that my CPAP trial was really meaningless because it was too short for me to become acclimated and feel the effects of therapy. I am hoping to acclimate myself over a longer period of time and then get accurate subjective evidence of the effects of CPAP.)

At the moment, I am leaving my pressure constant at 4 with the goal being to become acclimated to the machine and be able to leave it on more than a couple hours. I find higher pressure very hard to tolerate, even with EPR.

In the meantime, I have been looking at the data and I noticed that my AHI is fine but as soon as I fall asleep, my flow limitations go wild. (Basing my estimate of when I fell asleep on the very obvious regularization of my breathing.) The night posted here is representative of the usual pattern. From what I have read, one approach to UARS is treating flow limitations. When I can tolerate it, I plan to raise the pressure and see if that reduces those flow limitations.

I don't even know what my question is... I guess, do folks think these flow limitations could be meaningful? Is it possible that could be (at least part of) why I feel awful? Is there room for improvement here? (I know the real question is whether any of this is actually waking me up, and unfortunately, my new doc ordered a Type 3 HST, so I am not sure that will actually tell me the answer to that question... ugh.) And I guess... am I missing anything that I should be paying attention to? (I know just enough to be dangerous at this point )

FYI, for the night shown here, I took the mask off at 1:20 a.m. and then put it back on for a few minutes around 4:30 a.m. but I didn't fall back asleep until I took it off again. That is why I selected the portion of the night that I did.

Oscar Data Dec 3 - FL.png (201.36 KiB) Viewed 3661 times

[Julie]

What I see is not only your min. pressure set at the machine's default low of 4, which 90% of patients can't breathe well at, but for some reason your max has also been set there, when the usual is 20, or at least 15. Is there some reason I'm unaware of for those settings?

You have a great auto machine, but are using it in the least helpful way!

[amouse]

Thanks for your response!

Yes! I have everything at 4 bc I have a lot of trouble tolerating higher pressure, so when I have had it set on auto with a higher max, I have insomnia and as the pressure goes up, it makes it even harder to sleep and tolerate the machine. I have also read that auto is not so helpful for UARS since it’s looking for different things than the issues we have, but I don’t know.

For now, I’m just trying to adjust to low pressure first and then turn the pressure up once I’m more used to the machine.

I don’t know if there is a happy medium that will make it easier to tolerate bc it’s actually helping me breathe... I guess that is something I had not considered!

[Julie]

This may be off if you're already aware of it, but it's the low setting, the minimum, that does the work, and leaving that at 4 is not helping anything... at least try it at e.g. 6 or 7 for a few nights, what have you got to lose now? You can set your machine at Cpap mode and not have to 'set' the max at all, but then you may well have trouble if you leave it at 7, but maybe try the min. at 6 and the max at 10, because with the max so low it blocks the min. from rising when it needs to chase events, UARS or not. And EPR is exhale relief, and trying it at diff. levels might also help... but leave it for now til you see how the others go.

[amouse]

I tried to set the pressure a bit higher (min 6, max 10) last night and I had a really hard time. I was not able to fall asleep with it on, unfortunately. I feel like I can’t breathe against that much air (even though I know it’s not that much) and when I start to relax, the pressure goes up and bothers me again. (This why I never adjusted to it during the original 2 week trial.)

I think I need to wear it during the day to adjust, maybe?

[Miss Emerita]

EPR may help to address your flow limitations, but it's unavailable at your current settings.

Please try raising your minimum = maximum to 5, with EPR of 1. If that goes OK over a couple of nights, go up to 6, with EPR of 2, then 7, with EPR of 3.

Also, try setting up your machine outside your bedroom during the day or evening, and use it for a couple of hours per day while you read or watch TV or use your devices. This will speed your adaptation to the whole experience and to the settings you're using.

Let us know how things go, would you?

[amouse]

That sounds like a plan. I will try it and check back with you. Thank you!!

[amouse]

I am working on my stepwise approach but still struggling. Now I have additional data points through my new Wellue ring and a new question.

After a few nights, I notice I consistently experience short O2 drops prior to falling asleep. As soon as I fall asleep my O2 is fine, but I have trouble falling and staying asleep with the mask on. I am going to keep working on wearing CPAP during the day to try to get used to it, but I wondered if anyone had any other recommendations and maybe reassurance that this is nothing to worry about. I am assuming this is some form of anxiety. I feel like I forget how to breathe normally or I find myself fighting the machine as I am laying there trying to fall asleep-- I am not sure if I am hyperventilating or what, but I feel woozy and short of air. Clearly, my body is fine with the machine because once I am asleep, my breathing is fine and my O2 is stable, but I don't seem to be able to stay out of my own way long enough to fall asleep and stay asleep.

Here is the whole night. You can see I struggled then slept a little on and off, but then gave up on the machine around 10:50pm, and then put it back on around 5:45am:

Oscar Data Dec 8.png (203.3 KiB) Viewed 3518 times

Here is a close up of the time I was using the machine in the evening:

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Here is a close up of the time I was using the machine in the morning:

Oscar Data Dec 8 - Zoomed Morning.png (214.02 KiB) Viewed 3518 times

Last night the O2 desaturations were more like 90-92, which freaked me out a little. I am assuming it's fine to desaturate for a few seconds, but I also feel woozy and short of breath when it happens, which can't be helping my mindset as I try to sleep. So I would really like to be able to avoid the whole pattern. As I said, I will be working on my stepwise plan per Miss Emerita's advice, and wearing CPAP during the day.

Any other advice?

[Miss Emerita]

O2 desats down to 90 are fine, and brief desats that are lower are not a cause for worry. Also, you might find it reassuring to know that O2 sats are normally lower during the night than during the day.

I see that your pressure is still min = max = 4. Did you try to raise it? I do think you'll breathe easier with some more pressure combined with some pressure relief.

The neurophysiological handoff from wake to sleep is complicated and can result in some CAs during the transition. In themselves, they are probably nothing to worry about, and they will probably abate as you start sleeping more easily with the machine. What's problematic for now is just that you're finding it hard to fall asleep.

[amouse]

Actually, yes, that helps a lot!

I did try to raise the pressure (with EPR) but I was still struggling to tolerate it, plus then I got freaked out by this, so I put it back down for a few nights to try to go even more gradually.

This is very reassuring and I think you are probably right-- perhaps 4 is enough pressure to be annoying but not enough to help me breathe, so I might do better if I raise it + EPR and stick it out a few nights.

Thank you so so much!!

[slowriter]

Can you get some prescription sleep meds to help during the adjustment period?

Just to make sure you understand, EPR reduces pressure during exhale. But the minimum machine pressure is 4. So, for example, if you set EPR to 3 (normally, you want this to address FL and UARS), the machine won't actually deliver that difference unless the min pressure is at least 7.

In short, I would get some meds, and set min pressure at 7 and EPR at 3, and then see how you do.

[amouse]

Yes, I can ask my sleep doctor about sleep meds, but I won't see her for quite a while (have to do my home sleep test and then book a follow-up). In the meantime, I can use melatonin and Benadryl. That is a good idea though.

I do understand what EPR does and I appreciate you making sure. (On a side note, I don't understand exactly why EPR helps UARS, but I have read that it does, so I take everyone's word for it.)

Last night, I had the pressure at 6 with EPR at 2. It was definitely more comfortable but I was not able to fall asleep with it. I tried for 90 min and then gave up. I still had the same O2 issue with four brief desats in the range of 89-92. I was planning to try pressure at 7 and EPR at 3 tonight.

The night before last, I had a lot of desats prior to falling asleep, including one at 85 for about a minute. I don't know what I am doing to cause those, but hopefully, it will get better.

[slowriter]

I don't understand exactly why EPR helps UARS, but I have read that it does, so I take everyone's word for it.)

The pressure differential simply enhances breathing efficiency.

[Miss Emerita]

People with UARS often have flow limitations that fragment their sleep. FLs are partial limitations of the airway, probably due to relaxation of the surrounding tissues during sleep, and they can create the need for greater effort during inhalation to overcome the limitation. That greater effort is, for some people, disruptive and tiring. The pressure support (aka EPR) provides a pressure boost that assists the sleeper during inhalation.

For some people FLs don't seem to have much effect on the quality of their sleep. For others, reducing FLs can make a significant difference.

[amouse]

Thank you for the explanation. That is very helpful. This is why I wish I was getting a sleep study with EEG-- I don't know whether these FLs disturb my sleep. I just know I have a lot of them and I am constantly exhausted... so it seems worth trying to tackle them and see if I feel better.

Below is last night's usage, which was about an hour with CPAP (the rest of the night it just my Wellue ring data). What I find encouraging is that I had zero FLs during the brief period of actual sleep (and my O2 was very stable during that time). So, it seems like the 8/5 pressure combo is a good one for me, right? Now I just have to get to where I can put up with it for more than ten minutes of sleep. But I will keep working at it! Your advice has been invaluable!!

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