Feeling awful even with low AHI

Alright, good to know. I'll take another look at my data in oscar tomorrow. Would it be helpful to post anything I find suspicious here? As you've said my data indicates that my machine is already doing a good job of eliminating significant flow limitations. Also, what would be considered "significant"? My flow limits rarely go above 0.3.

Miss Emerita wrote: ↑

Fri Sep 06, 2024 11:15 am

Just so you know: Flonase takes a couple of weeks to kick in. Instead of a neti pot, you might want to try NeilMed rinse kit. I found it helpful to watch a couple of videos before trying to do the rinse. It feels a little weird, but it's good at clearing out gunk.

Dang, I wish my doctor told me that. I probably gave up on flonase before I could notice the impact since I was having severe allergies at the time. I'll consider giving it another shot once I get my hands on some more. As for the nasal rinse, I actually ended up getting the neilmed one simply because it looked cooler. So far it seems to work, although it's a truly strange experience to use. Thanks for recommending me this thing.

PotatoEater wrote: ↑

Fri Sep 06, 2024 12:49 pm

what would be considered "significant"? My flow limits rarely go above 0.3.

The height of the FL spike along with the number of spikes is what we look at when evaluating FLs on a ResMed machine.
Here's an impressively "bad" flow limitation graph.

PotatoEater wrote: ↑

Fri Sep 06, 2024 8:18 am

How would you spot an respiratory related arousal? I'm assuming that you would look for unusual flow rate activity and correlate it with some other data oscar provides?

Since I had a bit of time to kill this afternoon before a department meeting, I thought I'd find some examples and mark them up so you can understand what people like myself and pugsy are looking at when we tell folks that it looks like a lot of their events are "false negatives" and what we're saying about arousal breathing.

First, here is an image of an arousal that is most likely respiratory related:

Note: The large inhalations that signal the arousal occur after the hypopnea is scored. The user flag 1 (UF 1) is what can be though of as an "almost hypopnea"---in that it comes close, but just misses the machine's criteria for scoring a hypopnea. In my Oscar preferences I have UF 1 set to flag "events" when the flow rate drops to 30% or less of the baseline flow rate for at least 10 seconds.

Worth noting: Resmed machines score hypopneas when the flow rate drops to 50% or less of the baseline flow rate. It can be quite hard to figure out why Resmed fails to score some "bad breathing" stretches as hypopneas and scores other (somewhat benign looking) stretches of breathing as hypopneas. That's because it is essentially impossible to eyeball what the baseline flow rate is at any given point in the data. If I recall correctly the baseline flow rate is computed using only the last two minutes of respiration---if someone knows for sure, please feel free to correct me on this.

So essentially a respiratory related arousal is going to look something like this one does: There is evidence in the form of events (hypopneas, apneas, RERAs) or snoring or flow limitations scored before the large inhalations indicating the arousal occur.


Now let's look at a couple of examples where it's pretty clear that the arousal is not respiratory related. Here's the first example:

Here we see pretty clear evidence of probable sleep breathing before the arousal. Both the OA and the snoring are scored after the arousal takes place; hence whatever caused that arousal, it could not have been the OA or the snoring. That OA is likely a mis-scored normal sleep transition CA and we see a return to probable sleep breathing just after the event. You might also notice that as I'm falling back to sleep I do a bit of snoring. That's actually a common pattern for me---this kind of snoring (in me) seems to be more related to me getting fully relaxed and back to sleep rather than being a sign that my airway is threatening to collapse; the snoring ends when I'm fully back to sleep. Pre-cpap my husband would describe this kind of snoring as "Robin-purrs" to distinguish them from the kind of louder snoring that frequently accompanied his witnessing me have apnea/hypopnea episodes where my breathing (and loudish snoring) would appear to stop, only to start back up 15-30 seconds later.


Here's a second example of a spontaneous (non respiratory related) arousal:

Back when I was a new (fall 2010), I remember reading somewhere that this particular kind of arousal pattern was most likely related to simply turning over in bed. In this one, there's a false OA scored right after the arousal, but it's also possible to see this kind of pattern without an event being scored after the arousal. Why is the "false OA" so long? Well, it could be the case that I was holding my breath while turning over (that's not uncommon) and that in addition to turning over, I needed to do something to get the hose or pillows or cover just where I wanted them to be before snuggling back down to get to sleep. Again, you can see some evidence of "Robin-purr" snoring as I drop back to sleep after I did whatever adjustments to my body position and the bedcovers and pillows that I wanted to do during this arousal.


Finally, I want to end with this: Many times when we start micro-analyzing the flow rate breath-by-breath things can still be ambiguous, particularly if we're having a restless night where we're drifting between light sleep and wake for long periods of time---what Rubicon in one of his/her many incarnations labeled "sleep-wake-junk" breathing or SWJ for short. Here's an example of a close-up of what is most likely some SWJ breathing:

The stuff preceding what I've labeled as Arousal #1 is probably a short bit of sleep breathing. I was probably asleep and then aroused. You'll then notice that I appear to get back to sleep---as in the breathing pattern returns to one of my normal "sleep breathing" patterns, but it only lasts for maybe 90-120 seconds before an OA is scored. Now is that OA real? Or is it part of an unsuccessful attempt to get completely back to sleep? There's no real way to tell since my AirCurve 10 VPAP does not have an EEG attached to it. But there is a real chance that if EEG data was available, I might have been in light sleep when that OA occurred. And in that case, it would be scored as a real event.

If the OA is a real event, then Arousal #2 would be a real respiratory-related arousal.

But there's simply no way to tell for sure what's going on here. All we can do is talk about what probably or (even weaker) what is possibly going on here. I know my own data well enough to think that this is probably a case where I had fallen back to sleep for just a minute or two when that OA happened. And so I'm inclined to regard Arousal #1 as not respiratory related, the OA as "real", and Arousal #2 as respiratory related. But I can't say for sure that is what happened.

Hope that helps.

PotatoEater,

Here's the post I meant to write last night, but by the time hubby and I got home, I decided to take the rest of the night off and just read The Silmarillion instead of getting back on the internet.

PotatoEater wrote: ↑

Wed Sep 04, 2024 2:29 pm

Congestion:
1. I am using humidity level 5. I'm a bit worried going higher might cause condensation to form inside my mask.
2. I am using a heated hose, temp max at 86f.
3. A hot shower helps my congestion a lot, it's what I do when my allergies get bad.
4. I used flonase but it didn't do much. I switched to nasonex (which advertises itself as anti-allergy) and it seems to help more. It's effects are most obvious when I have moderate allergies.
5. I have not tried using a neti pot. I'll try getting one soon.

Because of your answers to 1, 2, & 3, if I were you, I would increase the humidity setting and worry about condensation issues only if they actually happen. The hose set to 86 should prevent rainout even a much higher humidity setting.

To give you some perspective: I currently am using an unheated hose with my AirCurve 10. I have the heated humidifier set to 8, the max setting because through the many years of xPAPing, I've learned that my nose really likes a lot of humidity. Right now, we're not yet into heating season here in Buffalo and we're still sleeping with the windows wide open. Night time lows can be anywhere from the upper 60s Fahrenheit (miserable sleeping weather) to the low to mid 50s Fahrenheit (wonderful sleeping weather). Ambient relative humidity in the bedroom at night pretty close to the ambient humidity outside, which probably means it's above 50% when the temp is at its lowest. And I don't get much annoying rainout. Of course, when the temps are down in the fifties, I tend to sleep with the cover over my head so that keeps the air in the mask much warmer than the ambient air temp in the room.

Now I also run the hose under the covers. And when the heat or AC is on, the relative humidity in the bedroom is less than 50%, sometimes significantly less than that. And when the ambient relative humidity is low and the air temp is also on the cooler side, I will get rainout in the hose. When it wakes me up, I just pull the hose vertical and allow the condensation to run back into the machine and the humidifier tank. I don't think I've ever had to do that more than once during the night. If I have, then I've learned to do it without fully waking up. My point is that rainout issues are not usually something that creates a lot of sleep disruption for me---even though I have the humidifier set to 8 and typically sleep in a colder than average bedroom.

As for 4: As someone else pointed out, flonase takes a few weeks to start making a difference. And it needs to be taken every day at roughly the same time. In other words, flonase works not by reducing the congestion itself, but rather by reducing the inflammation in over-reactive sinuses. And when it starts working, it is a gradual effect. In other words, you don't just wake up one day feeling the congestion suddenly disappeared. Rather, over time there's less and less and less congestion each day until eventually the level of congestion is so minimal that you no longer notice it on most days.

Going to bed when fatigued:
What I mean by this is that I become mentally and/or physically exhausted and go to bed earlier than 11:30. However, I almost never actually fall asleep that much earlier when I do this - I tend to simply spend more time awake in bed before I fall asleep. I think it's because I still feel jittery despite being tired, or maybe because of the mental connection I've made with that time now.

This is a difficult, knotty problem that can be difficult to untie.

First, it sounds like you may be letting yourself get over tired before going to bed. And, like a cranky toddler who missed his/her nap, it can be even more difficult to get to sleep when you're over tired.

And as you've discovered: When you are over tired and exhausted, that doesn't actually mean you are sleepy. So you're lying in bed exhausted, but unable to get to sleep because your body is (like that proverbial over tired toddler) is too tired to get sleepy enough to relax enough to fall asleep. It's a bad feedback loop: The exhaustion makes it harder to get to sleep and the fact that you are not sleeping makes you even more tired and more exhausted, but not actually any sleepier.

And so you wind up lying in bed not sleeping. Which in turn leads to feeling jittery. Which makes it even harder to relax and get sleepy enough to fall asleep. And, of course, all the sensory stuff coming from the CPAP and the mask just adds to the sense of frustration, the feeling of exhaustion, and the jitteriness.

The question is how do you break the feedback loop?

One thing is to relearn what it feels like when you are sleepy as opposed to tired or physically exhausted or emotionally exhausted or simply dealing with so much sensory overload that you can't relax enough to fall asleep.

Feeling sleepy is actually a pleasant sensation. Feeling tired or exhausted is an unpleasant sensation. Learning to distinguish between feeling sleepy and feeling tired/exhausted is important when you are dealing with any kind of insomnia problem. And then when you know the difference between feeling sleepy and feeling tired/exhausted, you try your best to go to bed when you are sleepy rather than tired/exhausted.

In my case, when I feel sleepy I often am yawning (sometimes repeatedly and/or uncontrollably) and my eyes want to be closed and stay closed. And the brain feels pleasantly like it doesn't want to focus on anything other than relaxing and going to sleep. In other words, my brain/mind is not racing through a whole bunch of things, nor is it worrying about things. It wants to just "blob out and do nothing" as my mother used to say. And there's no sense of achiness or physical exhaustion in either my body or brain in the sense of being over tired. Now if I stay up past this stage of feeling sleepy, that can, unfortunately lead to feeling tired or exhausted, and that in turn can make it harder for me to fall asleep when I finally do go to bed.

Sleep schedule:
1. My dream sleep schedule would be being able to go to bed at 9 and waking up at 7:30.

That's a total of 10 1/2 hours. It's unreasonable to expect to sleep soundly for 10 1/2 hours every single night. Most people need around 8, maybe 9, hours of good quality sleep each night. Many people who spend 10+ hours in bed every single night are not actually getting good quality sleep.

2. It is possible that the sleep schedule I chose is inconsistent with my body's natural tendencies. The reason why I go to bed so late - 11:30 is that when I started CBT I realized that with my original bedtime (9:00) I spent a lot of time awake in bed trying to fall asleep. I figured that if I pushed my bed time back it would help, and I think it did. However, actually staying up that late is pretty difficult at times.

This is a common part of CBT-I. It's called a "sleep restricted" schedule, and I remember doing a pretty severe version of it when I was fighting my First War on Insomnia back in January-September 2011. It can work for some people---it did help me, but it did require months of dedication to stick with the full version of my sleep restricted schedule regardless of how I felt, both in the morning and at night.

The idea of the sleep restricted schedule (in your case attempting to sleep between 11:30 and 7:30) is to (slightly) deprive your body of just enough sleep that it forces the body to learn how to get to sleep at the beginning of the night and to consolidate the sleep cycles by teaching the body to not wake itself up and then keep itself awake in the middle of the sleep cycles. The goal is not to eliminate all wakes every single night; rather the goal is to reduce both the number of wakes and (more importantly) the lengths of the wakes to the point where they no longer are interfering with the overall subjective assessment of the quality of the sleep.

In general, we don't remember wakes that are shorter than about 5 minutes. And in general it's considered normal to have multiple short (less than 5 minutes) wakes during the night: Many people will wake up briefly after every REM cycle. Many people will wake up briefly to turn over in bed. Or to adjust the bedcovers. Or when their bed partner moves around. Or if a pet jumps on/off the bed or moves around. The thing is that in a person with normal sleep patterns all of these wakes are so short that the person doesn't remember them in the morning and they don't disrupt the subjective quality of the sleep---as in the person thinks they slept soundly all night and they wake up feeling rested and refreshed. And overall, the ratio of actual sleep time to time in bed is usually quite high; this ratio is sometimes called the sleep efficiency. And when we subjectively report our sleep as being pretty decent, the sleep efficiency is pretty high:

Sleep efficiency = (Total sleep time)/(Time in bed) >= .85 or .90


Now what happens when we spend a lot of time in bed knowing that we're not sleeping (and possibly worrying about the fact that we're not sleeping, is that ratio drops. And when sleep efficiency drops below about .75, most people start to subjectively describe their sleep as "bad"---i.e. that's when we start saying that we tossed and turned a lot during the night. Or we couldn't get to sleep at the beginning of the night. Or we couldn't get back to sleep when we woke up too early.

Sometimes the only thing you can do is this: Get out of bed when you aren't sleeping and you've been trying to get to sleep for what feels like more than about 20-25 minutes, particularly if you feel tired/exhausted but you do not feel sleepy anymore.

Now my advice on what to do in terms of your sleep schedule may sound crazy. But here's what I would do if I were you:

1) I'd accept that on most mornings my body wants to wake up between 4:00 and 5:00 AM. So I'd simply get up the first time I wake up anytime after 4:00 AM and I would say to my body, "You are done sleeping for the night." Get out of bed. Make yourself some coffee and breakfast and start your day. Do something "fun" with the extra time you have in the morning before anybody else in the house is awake---read for a couple of hours. Or knit/crochet something if you do that kind of thing. Do a cross word. Get on-line and read the news if that's what you want to do. Since you're not going to go back to bed, you don't need to do "sleep friendly" things. Literally do whatever you want except for lying in bed trying (unsuccessfully) to get more sleep.

2) Since wake up time is approximately 4:00-5:00 AM, it is reasonable to set bedtime around 9:30pm or so. Allow yourself the luxury of going to bed as soon as you feel sleepy if it is after 9:00 pm. But if you don't manage to fall asleep in what feels like about 20 or 30 minutes, get out of bed, leave the bedroom, and do something else. What that something else is is your choice: You could read, do some handy-crafts, listen to some music, even watch a bit of tv if you want. But do it outside of your bedroom. As soon as you start yawning, go back to bed and try to get to sleep.

The trick, however, is to do your best not to clock watch: Don't look at the clock when you're trying to get to sleep at the beginning of the night. When it feels like you've been trying to go to sleep for 30 minutes, get up. It doesn't actually matter how long you've actually been lying there in bed: If it feels like it's been 30 minutes, that's long enough---your body is not willing to go to sleep yet and there's no point in forcing it to try to get to sleep, regardless of how tired you feel.

As for anxiety, I'm almost certain that it's a cycle like you described. I know it's possible to break out of this mindset, as I was able to do so briefly, although I've reverted back to stressing over my sleep again recently.

That anxiety is part of your feedback loop.

I'll try to just get out of bed if I wake up early from now on.

Yes, this will help more than anything else will.

If both of my CPAP charts look fine from a data standpoint, I think I'll revert to using nasal pillows and a lower pressure setting since it was more comfortable.

The data you posted looks fine. You need to concentrate on comfort. If you're not comfortable, you won't be able to sleep well.

Good luck!

Thank you so much for your advice. I'll try to implement it and see what happens over the next few weeks.