CAs, RERAs, APAP Machine

[KingKongBingBong]

By the way - I have noticed one thing I think. I will keep a diary to make sure certain that I am correct on this.

When I use APAP, I seem to sleep less but feel similarly upon waking. So that's one positive thing.

[Ratchick]

I literally just listed out the evidence. Not everything has to be backed my a double blind randomised control placebo.

No, you're right, it doesn't. But that which is asserted without evidence can be dismissed without evidence.

I don't really care for whether my theories regarding ancestors are correct or not TBH, I only care about how to fix my own problem.

Then we can dismiss it completely then, along with the assertion that it has anything to do with their bone structure.

How many people on this forum have gotten better from UARS from PAP treatment? I didn't find a single person reporting major improvement via search, so it's a handful at most.

That's an assumption, not evidence. It might be right and it may be wrong, but it's still an assumption based on a single forum.

I'm not chasing after a "perfect score", I am chasing after <5 RDI <1 AHI. I have already had 1-2 weeks worth of nights on the ASV with 0 AHI so that is solved. Now I just need to fix RDI.

You literally have said in the recent posts that you want zero events. My question would be, though, what if that doesn't resolve it? Would you accept the idea that perhaps it's not sleep disordered breathing?

If my RDI is 30, I don't give a sh*t if I have no perceivable symptoms, having mini suffocations hundreds of times per night is DEFINITELY not good for you. Just because something hasn't been researched doesn't mean there isn't an impact.

Nobody said that an RDI of 30 is either okay or hasn't been researched. Literally nobody. That's why RDI is diagnostically the same as AHI in the literature, in terms of the need for treatment. You use CPAP and/or BIPAP. It's invasive and effective for most people, but way less invasive and far more effective than surgery. That's why it's the first option and gold star therapy.

There are people out there with 100+ AHI who think they sleep well, but objectively that is atrociously bad sleep.

You don't seem to grasp that there is a difference between sleep apnea and sleep apnea syndrome. One is the presence of apneas during sleep. The other is symptoms from the presence of apnea during sleep. And yes, even in the absence of obvious symptoms like drowsiness, daytime tiredness, etc, doctors still encourage the treatment of severe apnea because that thing you said, about doctors not bothering to research what it does without therapy? They did. And they discovered that severe apnea should ALWAYS be treated because it can cause severe health issues.

They also found that up to a quarter of people have mild apnea and most don't have symptoms (and many do not progress to more severe apnea) and that without symptoms, the treatment is usually just lifestyle changes initially. They also found that pretty much everyone has some events during sleep, as has been mentioned before.

PAP isn't risk-free either. Neither is surgery. There's such a thing as incidentalomas and overtreatment in medicine - which is why they stopped recommending men get their PSA measured routinely because so many men were being diagnosed with prostate cancer late in life, which was so slow-growing that it would never have caused any risk to their life or even symptoms... but of course, once they know it's there, they want it removed, because obviously it's not good to leave CANCER in your body, right?

Except they would almost certainly never had even known it was there before they died of natural causes (or unrelated health issues). So these men went ahead and had surgery that very often leaves them impotent and/or incontinent, at least temporarily, along with months of radiotherapy etc on top, then regular scans and checks and the endless worry that it might come back, when they should be just enjoying their retirement. And you know what else?

Some of those men will die as a result of complications of that surgery and therapy, because nothing is risk-free. And in this situation, they discovered that treating these indolent prostate cancers discovered only by PSA blood tests that were asymptomatic caused far more morbidity (illness) and mortality (death) than simply waiting to see what happened. It also didn't significantly reduce morbidity or mortality of those with more malignant prostate cancers, either. So it was a bust in both cases.

Sometimes chasing down and treating things that aren't actively causing issues causes more harm than good.

However, if you have a sleep study that shows 30 RERAs an hour, then PAP is the way to go, regardless, because that's at the criteria for severe sleep-disordered breathing.

Oh and just to be very clear surgeries are considered more invasive and less successful. That is why PAP is the first treatment of choice in almost all cases even though it isn't a perfect treatment itself.

And yes, I'm aware of Weston Price, and I'm also aware that much of his work is regarded as either outdated (and has been for seventy years or so) or fringe, with little or no evidence or research to back it up, and his anthropology ideas are heavily influenced by thoroughly discredited beliefs. He wouldn't be my go-to source, to be honest, considering there's been far more research in medical dentistry, anthropology and nutrition since the 1940s, when he died.

[SarcasticDave94]

Just one last point I'd like to make. If PAP therapy isn't working after all the setting edits and such, it can be discontinued easily. Just don't mask up. However if surgery is found not to work out or fails to give the expected results, you cannot undo that.

[brainf0g]

UARS here. Going from nothing -> AirSense -> getting rid of AirSense -> getting AirCurve -> tuning using all the resources on this site and forum = life altering. Got the best sleep of my adult life for several months... to the point where I stopped coming here or even looking at my OSCAR data.

Then I had surgery last summer and the recovery process directly affected my sleep and went back to getting terrible sleep for months even with the Bi-level. But I am recovered enough to start reviewing my data again and making adjustments. Been a couple weeks and things are slowly improving again.

[Geer1]

By the way, I have attached some of my breathing spikes. These don't look like RERAs to me, they look more like mini centrals. Almost all the spikes on this machine look like this; how do you guys interpret them? What can I do about them?

Those aren't obvious RERA's and they aren't mini centrals. The slightly larger breath before the flat line is the start of an arousal and the "mini central" is part of the arousal process as are the larger amplitude breaths that follow. 

What is causing the arousal is the hard part. There is still a chance these could be RERA's but you would need EEG and effort belt data to determine if that is the case and in some rare cases you may even need esophageal pressure monitoring (which is never done except in clinical studies). Even if these are RERA's it begs the question though, are these RERA's because your breathing is actually bad or because your nervous system is overreacting to extremely minor breathing issues? 

These arousals could also be caused by a movement disorder or they could be spontaneous arousals, all of which show up similar in the data. Sometimes you can learn more by videotaping your sleep and seeing a correlation/cause of the arousal but sometimes it isn't clear (is the twitch you see the cause of the arousal or part of the arousal process?). As you can clearly see your breathing looks relatively normal prior to arousal so seeing a breathing related issue in video is unlikely.

The only way you can proceed with titrating at home is to manually count those instances each night and divide by hours of use to get a potential RDI for the night then see if that potential RDI improves or worsens when changing PAP settings. Note you need to average this and not use one off nights of data as too many other things influence sleep quality and arousals (stress as you mentioned being a great example that is not consistent night to night). If this process is inconclusive the only way you can tell if these are RERA's or not is to get an in clinic titration study done, you need to ensure they will be checking for RERA's and titrating to remove them. You also want to try and find a place that will titrate using pressure support to treat the RERA's as many places will only try varying pressures whereas RERA's can be more effectively treated with pressure support. 

Since you already have an APAP and ASV you can do this self titrating process fairly simply. Start with APAP and try increasing the pressure to see if that helps. If not much help then switch to ASV and slowly try increasing min PS to see if that offers any improvement. If neither reduce these occurrences then your chances of finding improvement on PAP are slim.

[KingKongBingBong]

By the way, I have attached some of my breathing spikes. These don't look like RERAs to me, they look more like mini centrals. Almost all the spikes on this machine look like this; how do you guys interpret them? What can I do about them?

Those aren't obvious RERA's and they aren't mini centrals. The slightly larger breath before the flat line is the start of an arousal and the "mini central" is part of the arousal process as are the larger amplitude breaths that follow. 

What is causing the arousal is the hard part. There is still a chance these could be RERA's but you would need EEG and effort belt data to determine if that is the case and in some rare cases you may even need esophageal pressure monitoring (which is never done except in clinical studies). Even if these are RERA's it begs the question though, are these RERA's because your breathing is actually bad or because your nervous system is overreacting to extremely minor breathing issues? 

These arousals could also be caused by a movement disorder or they could be spontaneous arousals, all of which show up similar in the data. Sometimes you can learn more by videotaping your sleep and seeing a correlation/cause of the arousal but sometimes it isn't clear (is the twitch you see the cause of the arousal or part of the arousal process?). As you can clearly see your breathing looks relatively normal prior to arousal so seeing a breathing related issue in video is unlikely.

The only way you can proceed with titrating at home is to manually count those instances each night and divide by hours of use to get a potential RDI for the night then see if that potential RDI improves or worsens when changing PAP settings. Note you need to average this and not use one off nights of data as too many other things influence sleep quality and arousals (stress as you mentioned being a great example that is not consistent night to night). If this process is inconclusive the only way you can tell if these are RERA's or not is to get an in clinic titration study done, you need to ensure they will be checking for RERA's and titrating to remove them. You also want to try and find a place that will titrate using pressure support to treat the RERA's as many places will only try varying pressures whereas RERA's can be more effectively treated with pressure support. 

Since you already have an APAP and ASV you can do this self titrating process fairly simply. Start with APAP and try increasing the pressure to see if that helps. If not much help then switch to ASV and slowly try increasing min PS to see if that offers any improvement. If neither reduce these occurrences then your chances of finding improvement on PAP are slim.

I struggle to understand this principle, given that a RERA event has a certain classification for which certain criteria should be met, and these do not seem minor.

Respiratory Effort-Related Arousal (RERA)
A RERA is defined as an arousal preceded by any of the following:
1. An apnoea or hypopnoea of <10seconds in duration
2. The nasal pressure signal excursions drop by 20-50% of the baseline breathing amplitude, for a duration of ≥10seconds
3. A sequence of breaths lasting ≥10seconds characterized by increasing respiratory effort or flattening of the nasal pressure waveform, when the
sequence of breaths does not meet the criteria for an apnoea or hypopnoea.

Given these conditions I don't see how a RERA could be a 'minor breathing problem'.

But let's presume that the nervous system is overreacting, what can I even do about that? There doesn't seem to be a good next step. I have only been suggested CBTi (I am not an insomniac, I am not anxious etc.) and SSRIs (which barely move the needle once you account for placebo). TBH right now I am done with PAP therapy and am looking at what I believe to be a more effective treatment, MSE.

[KingKongBingBong]

UARS here. Going from nothing -> AirSense -> getting rid of AirSense -> getting AirCurve -> tuning using all the resources on this site and forum = life altering. Got the best sleep of my adult life for several months... to the point where I stopped coming here or even looking at my OSCAR data.

Then I had surgery last summer and the recovery process directly affected my sleep and went back to getting terrible sleep for months even with the Bi-level. But I am recovered enough to start reviewing my data again and making adjustments. Been a couple weeks and things are slowly improving again.

What surgery did you get? I was told to get a septoplasty and turbinate reduction, but after delving into the literature I have determined that's an ineffective treatment. I am instead hoping to get MMA with 1cm advancement minimum, as anything less is not effective for airway treatments.

BTW I read your post and if you started with 10 AHI you don't have UARS dude. That is OSA. We are a different beast.

[brainf0g]

What surgery did you get?

BTW I read your post and if you started with 10 AHI you don't have UARS dude. That is OSA. We are a different beast.

Surgery was completely unrelated to sleep or breathing. Recovering from it involved waking up multiple times in the middle of the night.

This was also after I left the Apnea Board, but I eventually had my first appointment with one of Dr. Guilleminault's (RIP) colleagues in early 2020, had a proper sleep study performed, and got a proper UARS diagnosis. Before then, I was running off a used AirCurve I purchased out of pocket. In order to be treated with the new doctor, had to get a new prescription from their DME. So now I have two identical AirCurves. They titrated me to almost exactly where I was with my old machine and that was working great until the surgery.

My last follow up was unfortunately with a sleep medicine nurse practitioner. I explained the surgery and how I'm recovered now but I still feel terrible in the morning on my old settings. They said to give it more time instead of making any adjustments... so I gave it more time and things did not get better. So here I am re-titrated myself and making small improvements again. I should probably update my main thread.

[Geer1]

I struggle to understand this principle, given that a RERA event has a certain classification for which certain criteria should be met, and these do not seem minor.

Respiratory Effort-Related Arousal (RERA)
A RERA is defined as an arousal preceded by any of the following:
1. An apnoea or hypopnoea of <10seconds in duration
2. The nasal pressure signal excursions drop by 20-50% of the baseline breathing amplitude, for a duration of ≥10seconds
3. A sequence of breaths lasting ≥10seconds characterized by increasing respiratory effort or flattening of the nasal pressure waveform, when the
sequence of breaths does not meet the criteria for an apnoea or hypopnoea.

Given these conditions I don't see how a RERA could be a 'minor breathing problem'.

But let's presume that the nervous system is overreacting, what can I even do about that? There doesn't seem to be a good next step. I have only been suggested CBTi (I am not an insomniac, I am not anxious etc.) and SSRIs (which barely move the needle once you account for placebo). TBH right now I am done with PAP therapy and am looking at what I believe to be a more effective treatment, MSE.

Different levels of breathing issues cause RERA's in different people. 

You do not have apnea or hypopnea. Your views posted were zoomed in but I am assuming the amplitude of those breaths is similar to the majority of the night (tidal volume chart will tell you this) and if so I do not believe you have the level of nasal pressure drop or flattening of the nasal pressure waveform mentioned in other options as I believe it would show up in the flow rate data that you posted and appear as a flow limited breath. Your breathing prior to these arousals appear to be normal breaths. Sometimes RERA's can be hard to distinguish though so I am not writing off the potential completely, I am just saying that on these PAP settings you don't show signs of the typical breathing issues that would cause a RERA. 

Lets say you have RERA's because your effort levels are high because you have a small airway size. If so there are only two options.

1) Increase flow through the small airway. PAP treatment does this and I already explained how you can see if it is helping by looking at your own data or by getting a titration study done. As a side note if your breaths appear normal but take excessive effort then the only aspect of PAP that will probably help is pressure support. Increasing pressure is not likely to help significantly as collapsing airways do not appear to be an issue for you (if it was an issue you should see signs of collapsing airways in the form of apnea, hypopnea or flow limitations in your flow data). 

2) Enlarging airways. The surgery you are thinking about affects only a small portion of that airway. I would be getting an experienced and knowledgeable doctor/surgeon to confirm that you do have a small airway and that this surgery would make a noticeable difference in your overall airway size and therefor have a good chance of making a noticeable impact. If he does not see any noticeable restrictions or small airway size that make him think this surgery would improve your specific case then I wouldn't think of proceeding. 

I would do what myself and others have recommended and give PAP a fair chance and work to determine if it is actually helping or not. If PAP does not help you then imo surgery also has a low chance of helping (and this will remain my opinion unless an experienced doctor states otherwise for a valid reason). 

If it is your nervous system it could be very hard to determine the cause and potentially even harder to solve, it is unlikely to be as simple as needing to do CBT or take an antidepressant. You are free to chase surgeries if you like just know you may end up like some of the other posters that have had 1 or more surgeries but are back asking for PAP titration help because the surgeries didn't fix the problem. 

If you haven't figured it out yet I am a strong proponent for figuring out what is wrong before you attempt to fix it. You have some evidence that RERA's are an issue with no treatment. Before proceeding further you need to determine if you still have RERA's or if your SDB indicated on sleep study is already effectively treated.

[SarcasticDave94]

KingKongBingBong

You're in a situation where your personal opinion and assumption can set you up for a big disappointment unless your complete surgical venture is backed by a knowledgeable and helpful surgeon. It's one thing to look at OSCAR data and edit PAP settings, and quite an extremely different thing to determine this or that surgical action is best, and further to assume the results are what you're hoping they'll be.

From what I hear a majority of these ENT surgeries for breathing are 50% successful at best. Then after the surgical patient heals they're on PAP.

Anyway that was my 2 cents on it. Good luck.