Is this breathing normal, or could this be UARS?

[stupidusername]

Trying to cut a long story short, I've had a really mixed up set of being half-diagnosed, un-diagnosed, half-diagnosed then half-diagnosed again with sleep apnea, but the results kept coming back differently and I've ended up with no diagnosis and confused as to whether there ever was something or wasn't, and decided to take it into my own hands as there is definitely *something* wrong with my sleep that is really destructive to my quality of life, and I'd really like to explore any avenue that might help me to live again...

So, I bought a CPAP machine and, after some help from you guys a few months ago, I've finally managed to get it all working with no leaks etc etc. And... I don't really see any apneas!! In the graph below, most of the events are when I'm awake...



But... When I zoom in, I wonder if anyone could comment on whether this breathing looks how it should?

To give a little bit of background, I tend to find I sleep relatively well for about four to six hours and after that I have very broken sleep. BUT -- *if* I can sleep at this point, I have incredibly vivid dreams and then tend to wake up panting as if I had run a sprint, or sometimes even frantically gasping for air. I don't tend to see apneas during these periods, but my breathing does (to me) look a bit off, and a bit like the sort of rough edges that I've read about with UARS. Here's one example from last night, a time when I had a very vivid dream and then woke up really out of breath. The little downward spikes at the right hand end are my little signal that I've just woken up within the last few breaths (each time I wake up I do a few little snorts, so I can track it down in the output later on):



The little flat bits just before I awake also look a bit apnea-ish but not quite.

Sometimes the difficulty breathing is also a part of my dream. The night before last I had a dream that the CPAP machine was malfunctioning and there was this distant wet snoring sort of a sound that came into my dream that was in time with the CPAP machine. It is how I would imagine a struggling-to-breathe sound might come into your dream from outside, if that makes sense... Again, there is no apnea, but the breathing graph looks an odd shape to me compared with how I think it should normally look:



...seeing that it is an odd shape is more pronounced when you look at it in context, here I've also added the period immediately preceding the above one. At the start it looks normal-ish, I think? Though it still has quite a few rumples in it (not sure how normal that is?). But following that along and onto the next line (from the graph above), by the time I wake up, it looks like my in-breaths have become much shallower and my out-breaths much more "attacking"...



So, my question is... Is this a case of "no apneas here, sorry this is not the solution to your sleep troubles"... Or is there something interesting here from a breathing perspective? Does this have a UARS feel to it? I know that when I get more of this crazy-dream-but-constantly-waking-up-panting sleep I feel so much better, but often I cannot get that part of my sleep to happen. Those nights where I *don't* have these exhausting experiences lead to days where I just feel terrible. So it feels like it's a really important part of my sleep cycle that is being disrupted.

Having seen pictures of people with UARS, I also do have that sort of face, with a very small jaw.

Thank you even for having read this, I so badly need to find a way to improve my sleep, so any ideas are hugely appreciated!


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EDIT

As Pugsy has pointed out, I didn't zoom in as much as I could, so here is the last minute of each of the two cases above (in each case, the minute before I wake up gasping for air, heart pounding).

[stupidusername]

(Also, apologies, I've been trying to use imgur's embed link but my post was refused on security grounds, so had to change them to clickable links)

[Pugsy]

When I try to view your links I get broken links to the first and last links so couldn't see them.

The 2nd and 3rd links...what you have pointed to are arousal/awake breathing irregularities. All they mean is something woke you up or caused an arousal or awakening. As to what caused it there is really no way for us to know what it was.
It's normal to wake up after a REM sleep cycle. Did you know that? Maybe that's what is happening with you. Those wee hours of the morning are when we would usually have more REM.

Those areas of breathing you pointed to aren't the cause of the arousal but instead a symptom of the arousals.

The fact that you don't have any flagged events while on cpap just means the pressures used prevented them.
You can't use that to say you don't have sleep apnea events while not on cpap....just means none while on cpap. The machine is doing its job.

I don't know why you can't embed the images from imgur because I can. You must be doing something different somehow.
Here's one of mine from not long ago. Lots of arousal/awake breathing including a couple of false positive flaggings.
Whatever caused the arousal...it wasn't related to the airway but for me this is common as I have other issues that mess with my sleep.

[stupidusername]

@Pugsy, thank you very much for the reply! I've just realised I was being an idiot and using the wrong kind of embed link.

Yes, that makes a lot of sense about the arousal irregularities, and waking up at the end of REM does sound a possible explanation. There are a couple of things that make me doubt that: (1) that I find it hard to stay asleep for long at all at the time of the morning (I am constantly round-and-round-and-round falling asleep and waking up often just after minutes asleep) and (2) that I wake up so incredibly out of breath (in both of those examples, it took a few minutes for my breathing/heart rate to return to normal). For (2), I realise it could be psychological of course. Though my dreams are not bad dreams.

The thing I was really curious about, however (I think perhaps I didn't explain it well), was not the bit immediately before arousal, but the whole minute before and its general shape. I hope you can see the last image now? If not, the full size link is at https://i.imgur.com/e6BzpV0.png (I was trying to do a "large thumbnail" as you suggest in your "how to" guide, but something must not have been working). The thing that intrigued me was how the general shape of the graph seems very different in the last minute before I wake up compared with a couple of minutes earlier (in the image above it): the inhales look very much smaller, and the exhales look very spiky. And in my image number two above I wondered if the tops of the curves looked flattened in the way I have read is characteristic in UARS (several of the tops seem to have double peaks).

But I realise I might just be clutching at straws! It may just be normal "waking up" as you say. The CPAP is set at 5cm, that could also be enough to clear up any apneas, as you say, though I set it as low as felt comfortable, to try to avoid that... If so, I might have to come up with another solution or try to find a doctor who at least makes some sense rather telling me I have sleep apnea and he wants to give me a CPAP machine one week, then the next week tells me he never said that and why on earth did I think I had sleep apnea!! (And no, I'm not mad, I think... He most definitely offered me the CPAP and I only didn't take it because I hadn't heard of sleep apnea and thought taking an extra test sounded like a good idea)

[Pugsy]

Your flow rate or breaths look a bit ragged and not like normal breaths but beyond that I have no idea what might be going on. Sorry. While we can see evidence of arousal breathing and even the shape of our breaths..we can't always see the cause of whatever irregularity we are seeing.
You've not zoomed in quite close enough to really evaluate each breath but you can do that and compare to the chart below and see if anything stands out.

You also have eliminated the Flow flagging and even cut off the FL numbers in the statistics.....this happens when you use Fixed cpap mode....the machine doesn't even flag the FLs if they are happening. If you want to use a fixed pressure it would be better to use auto mode and just set the minimum to equal the maximum and that way FL flagging is turned on.

UARS doesn't really show up on the detailed graphs that these machines give us. The only real 100% way to diagnose it is with a sleep study with a Pes device. Otherwise UARS becomes a "rule out" diagnosis....rule out everything else and it might be UARS kind of thing. If it is UARS going on you most likely need a lot more than 5 cm fixed to address it and there's nothing on the graphs that will help you all that much. You have to go on how you feel and do a lot of experiments at various pressures and keep extremely detailed logs.

What kind of sleep studies have you had? Any done in a sleep lab or all home studies. Any of them mention arousals from respiratory events?? Or mention spontaneous arousals???

[stupidusername]

Thank you @Pugsy. Ha, I thought I had zoomed in as much as I could, but now I've just discovered the "highlight an area" option in Oscar... Which is much better. I've added zoomed images to the original post.

The image you just posted was one of the references I was using, and to me, especially zoomed in as it now is, it does look like an inspiratory flow limitation. But I'm keen to know if anyone with more experience (such as yourself) agrees or disagrees. I totally get what you are saying that the graph can only show the results of many possible causes. But I thought it worth popping the graphs up in case anyone with experience might spot something I can't.

I had no idea I had FL turned off. Yes, auto with same min and max would work for me. I'll do that from tonight.

.......

Regarding sleep studies, it's been a mess! Sorry for the spam, but I'm not sure how to answer your question without a lot of info:

1) Home oximetry. AHI 11.
-- Doc said it looked really like sleep apnea and asked if I would consider trying a CPAP machine but because of my hesitance we agreed instead to:

2) Home oximetry/nasal canula/chest bands home study. AHI low.
-- Barely slept (I don't sleep well under pressure...) 30 second phone call informed me "great news, you don't have sleep apnea!" with no explanation of why it contradicted the previous results. End of interaction with that doctor.

3) Home oximetry/nasal canula. AHI 20 (x3 nights).
-- I bought three nights in a row from a sleep apnea charity out of curiosity. Took those results back to the doc who said they were rubbish because there weren't any major desaturations. Woman at the charity told me that because I was very fit at the time, I could have apneas without desaturations and that doc didn't know what he was talking about.

4) Home oximetry/nasal canula/chest bands home study. AHI low.
-- The doc denied ever having thought I had sleep apnea, but nonetheless agreed to do a second home study (this one). Only follow up was a letter basically saying "like I told you and have always thought, you don't have sleep apnea".

5) Home oximetry/nasal canula/chest bands home study. AHI 10 but around 20 desaturations per hour.
-- I moved to Germany and still felt like the mix of results and things people had told me, it was worth looking into again.

6) Lab sleep study. No apneas.
-- The new German doc booked me straight into a lab sleep study. But I just couldn't get to sleep. Kept falling asleep and waking back up again. I slept for about an hour at the end. Doc said she couldn't see any apneas at all. But, she booked me in for another night in the lab because of the mismatch with the home sleep study.

7) Lab sleep study -- results next week!!

So, now next week I have the results of my second lab sleep study. I still struggled to sleep (I just don't sleep well under pressure ) but they gave me a sleeping tablet, so I slept about three hours. I still feel like whatever is the issue with me is one later on in sleep so I'm really afraid that nothing will show up and I'll just be ushered out of the door again. So, I wanted to do some investigations of my own on the side, see if it's worth asking the new doc about UARS. Unlike the first doc (who really had this horrible air of arrogance about him) the new one seems to really care, but I think it's still worth having a few ideas before going in there, in case there is something she can look at in all her graphs (e.g. as you say, RERAs). It's been about four years now, so it would be nice to figure it out one way or the other.

Sorry so long!!!

[Pugsy]

Sleep studies where we don't sleep much...pretty much useless for establishing anything except that we didn't sleep much.
Home studies that do NOT also measure sleep status (you need electrodes on your face and head to get the EEG data) for someone who doesn't sleep so good leave the door wide open for simply being incomplete...did not much happen because not much happened or because we weren't asleep and if you aren't asleep then irregularities that do happen simply don't count.
Awake breathing irregularities are normal and mean nothing except we are awake when maybe we should be or want to be asleep.

You do NOT have to have marked desaturations to have sleep apnea problems. It wouldn't be impossible to have an arousal from a sleep apnea event prior to the desat that might accompany the event if a person were to keep on sleeping.
I have a friend who had an in lab sleep study and ended up with AHI of over 60 and had no real desats besides the normal 2 to 3 % drop we might see just from being asleep. She did have a truckload of arousals though from respiratory related events.

Your zoomed in flow rate breaths.....don't bother zooming in on anything that is arousal related. It's going to look weird anyway and it's just from being awake (even if you don't remember being awake).

Now the zoomed in flow rate breaths when it appears you were possibly asleep....obviously not normal but beyond that I don't have the skills to offer much.

I don't remember your past history from the first time you were here and don't have the time to go looking right now.
So forgive me if I or someone else has already asked these questions.

How old are you?
Male or female?
How many hours of sleep are you getting on average? Real sleep and not laying in bed trying to sleep.
Do you take any meds of any kind? If so, what?
Recreational drug use?
Do you drink alcohol within 2 hours of bedtime?
Any other physical or mental health issues going on?

I think we need to wait until next week and see what the last in lab sleep study shows or doesn't show.
I don't like making WAGs (wild ass guesses) anyway and since some real data is going to be available relatively soon then we wait.
When you get the report try to get the detailed report and not just the brief summary report.
Black out personal data and post it on the forum for easy reading.

Do continue in this thread and don't start a new thread. Let's keep all information and discussion in this thread.

It wouldn't be impossible that you simply have bad sleep from something other than airway issues and cpap can't fix any problem unless it is related to airway issues. I have seen it often....someone feeling like crap because of bad sleep and they don't have airway issues causing the bad sleep. Not something we want to hear of course because we desperately want to have a problem that is fixable but sometimes figuring out the cause of the bad sleep isn't so easy. Unfortunately it's really difficult to fix a problem if we can't identify the problem.

It does sound like you have what we call sleep maintenance insomnia late in the night. That is where we wake up and have trouble going back to sleep. Sleep apnea or even UARS is but one item in a very long list of potential causes for the wake ups. I happen to have sleep maintenance insomnia myself and while I know my cause...it still isn't an easy fix but I know my sleep issues are related to pain issues. Old woman with really bad arthritis in my back and pelvis....and fixing that isn't easy either. It's work in progress at the moment.

So I understand your frustrations and can empathize but I also first hand know that not all sleep problems can be fixed by cpap....though I certainly wish they could.

[stupidusername]

Well there's the funny thing. I went to the doc complaining of sleep maintenance insomnia. Had to take an oximetry test before I could see that doc, so thought that was just a formality that I had to go through to talk to him about my insomnia. He convinced me I had sleep apnea after I started out being very skeptical. Then a few months later he asked why on earth i would ever have thought I had sleep apnea when he had quite clearly told me I hadn't. It was quite odd.

So, three reasons that I keep revisiting sleep apnea: (1) the one person who has actually said for sure I did NOT have it, did not himself build much trust for me. (2) the nights when apneas have shown were the ones where I felt I slept better. Those nights that showed none were nights I felt I barely slept. (3) As you say, yes, you are absolutely right, apnea is treatable and that is extremely appealing, which makes it hard to let it go unless it's truly ruled out.

But also the out-of-breath wakeups and the weird sloppy snoring noises that enter my dreams before I do. But, yes, I agree that this might be a total red herring. But it also feels like something that I have to really rule out, and I don't feel confident that I have just yet.

Regarding the zoomed in graphs: I don't *think* I'm awake at that point. I can pinpoint where I wake because I make sure to do my little snorts within three breaths of waking up (and I wake up very abruptly). So those two zoomed in graphs start over a minute before the awakening. But are you saying that even a minute before that it is too close to an arousal to be likely useful? That makes sense. I was thinking that that was a good place to look as it might help me to understand my arousal, but I can see that it could be that the arousal causes the breathing. They do look much more like a slightly squashed version of my usual sleep breathing though, and completely different from my awake breathing...

Don't worry about checking the other thread, all you will learn is that I had no idea what I was doing! Regarding your questions about me: 40 years old male. I can get 5 hours of good sleep, then it's incredible hard to say as I awake so much, but *IF* I can get back to sleep properly, and have that crazy dream sleep, I can probably get another hour (albeit, on and off). Then I feel quite good. No meds or drugs. I do smoke, but only for the past few years and the problem was the same before. I rarely drink because I cannot catch up the sleep (I have had one beer this month); I would love to drink more though! No other issues, though I have very low mood after bad sleep (and after better sleep I feel quite alright).

Arthritis in the back sounds like an absolute nightmare!! I can imagine what that can do to your sleep and do not envy you. I hope you manage to crack it! But, you are of course right. Bad sleep can have many causes, and I'll have to wait to see what the sleep lab comes back with. I really appreciate your input.

[Pugsy]

A couple of random way out on a limb ideas....have you had testosterone checked as well as vitamin D?
Both of those are known to mess with sleep.

Instead of zooming in on flow rate just a few minutes before the obvious arousal....go back much earlier in the night when you were most likely sound asleep.

Compare those flow rates and breath shapes to the breaths within a few minutes of the arousal.
Different??? The same???

[stupidusername]

I haven't had anything tested blood wise. But I'm starting to realise I should do. I think that will be first port of call after the sleep lab stuff is concluded. Cholesterol too.

Way back earlier is not where I had been focussing as I had assumed it would be more relevant at the time where my sleep is messed up, but it's a pretty interesting question. So I made the image below, which you might not want to look at as your eyes might dissolve. But it's about 20 continuous minutes of breathing at about 3:30am (when I'm fast asleep). A rough summary would be that in places (e.g. at the start) I think it looks like "perfect" breathing and then it seems to slide into flow limitation and back... Each row is about a minute and a quarter, and most rows have at least a few "bunny ears" (double tops) on them (that was the shape that stretched out to look like a flow limitation). But also lots of "good" looking breaths. I have no idea if that is completely normal, which it may be...

EDIT -- I've added in the bit just before the arousal for comparison. I think it looks similar but with slightly more of the flattened tops? (It's on a slightly different scale which is a bit annoying, so looks a bit bigger, but timewise it's on the same scale).