Need help, suspect UARS. Want to try APAP - need advice and guidance.

Pugsy · Post by **Pugsy** » Mon Jul 30, 2018 9:25 am

canyouhearmeaya wrote: ↑
Mon Jul 30, 2018 8:58 am
I believe 'for her' caps the pressure at 12? Or only works upto a pressure of 12?

Nope..you are wrong on how the for her mode responds.
It won't get excited about OAs seen above 12 if none of the other stuff like FLs or snores are happening along with that OA but if you have snores and Fls happening above 12 the machine will indeed respond with higher pressures.
I am using the for Her mode...I see near 16 max often and on occasion higher.

canyouhearmeaya wrote: ↑
Mon Jul 30, 2018 8:58 am
I think tonight I might set the machine back down to 7/12 and into 'For Her' and see how that goes.

There you go again...changing things willy nilly again ...you had 8 minimum for 6 nights was it...then 9 minimum and now you want to change modes and pressures again...

PICK SOMETHING AND BE PREPARED TO STICK WITH IT THROUGH THE GOOD AND BAD.

yrnkrn · Post by **yrnkrn** » Mon Jul 30, 2018 9:33 am

canyouhearmeaya wrote: ↑
Mon Jul 30, 2018 9:23 am
Were you using fixed pressure CPAP or an APAP? Did your machine have EPR?

I tried just about every combination... both AirSense 10 and AirCurve 10 in both fixed and auto modes. After lots of experimentation and excel graphs is was clear that the dominant factor in reducing flow limitations was EPR (AirSense) or pressure support (AirCurve).

For example, I have seen worse flow limitations in 16 fixed CPAP than lower 14/9 BiLevel.

Cpapian · Post by **Cpapian** » Mon Jul 30, 2018 10:41 am

yrnkrn wrote: ↑
Mon Jul 30, 2018 9:20 am

canyouhearmeaya wrote: ↑
Mon Jul 30, 2018 8:58 am
but after a point the pressure isn't actually helping resolve the FL's, and therefor instead its just mesing up my sleep quality
For me, FLs were not solved by higher CPAP pressure 18, but were solved with a BiLevel EPAP=9 IPAP=14 PS=5.

Elsewhere I heard that BPAP was the way to go for UARS. I don't know your history, is that what you have?

canyouhearmeaya · Post by **canyouhearmeaya** » Mon Jul 30, 2018 10:49 am

I have heard that also, but equally heard stories of people successfully using CPAP so I guess there's no hard and fast rule.

I currently have an APAP, Airsense 10 For Her, which has EPR so it is closer to BiPAP with that, but obviously limited to a maxium of 3 points of EPR.

yrnkrn · Post by **yrnkrn** » Mon Jul 30, 2018 10:56 am

Cpapian wrote: ↑
Mon Jul 30, 2018 10:41 am
Elsewhere I heard that BPAP was the way to go for UARS. I don't know your history, is that what you have?

In 2005 the sleep lab diagnosed obstructive apnea, I don't believe they knew what UARS was. Many labs still don't.
Since I sleep with CPAP/BiLevel for treating the OAs anyhow, the formal diagnostics of UARS does not matter that much to me.
This year I self titrated according to BiLevel protocol, EPAP to avoid OAs and PS (=IPAP-EPAP) to avoid the hypoapneas and the FLs.

Cpapian · Post by **Cpapian** » Mon Jul 30, 2018 11:18 am

Hey! I looked at your dr mews web site. He reminds me of Maurice Moss on the IT crowd. Particularly the one where he is chewing 17 sticks of juicy fruit.

He has some interesting ideas about jaw development.

I have to admit I didn't watch all his videos (power point presentations) because there were pretty boring and too much nattering for my patience. My main takeaways were keep your tongue to the roof of your mouth, lips together and teeth together. And chew, use your tongue to move the bolus around to develop your jaw and tongue strength.

I guess he is a renegade in the orthodontics field.

However, I don't think Steven Hawkings is a good or even fair example to demonstrate his ideas. I have seen stroke victims look like Steven, then walk out of the hospital a few days later looking absolutely normal. Who is to say how much of Steven's changed looks was due to muscle or bone or disease. I feel it was a cheap shot.

However, I do find many others who have interesting ideas about a topic tend to go a little overboard trying to sell their ideas. I recently read "Why we Sleep " by Matthew Walker. To listen to him, the world is a bunch of zombies if we don't get 8 hours sleep every night.

You might be interested in Dr. Steven Park's book "Sleep Interrupted". He is an ENT and well recognized as a fair authority on UARS. In his book, he runs the reader through what an examination by him would consist of, what he would be looking for, etc.

He also does a run down on which solutions work best for lets say which physical factors.

canyouhearmeaya · Post by **canyouhearmeaya** » Mon Jul 30, 2018 11:31 am

Cpapian wrote: ↑
Mon Jul 30, 2018 11:18 am
Hey! I looked at your dr mews web site. He reminds me of Maurice Moss on the IT crowd. Particularly the one where he is chewing 17 sticks of juicy fruit.

He has some interesting ideas about jaw development.

I have to admit I didn't watch all his videos (power point presentations) because there were pretty boring and too much nattering for my patience. My main takeaways were keep your tongue to the roof of your mouth, lips together and teeth together. And chew, use your tongue to move the bolus around to develop your jaw and tongue strength.

I guess he is a renegade in the orthodontics field.

However, I don't think Steven Hawkings is a good or even fair example to demonstrate his ideas. I have seen stroke victims look like Steven, then walk out of the hospital a few days later looking absolutely normal. Who is to say how much of Steven's changed looks was due to muscle or bone or disease. I feel it was a cheap shot.

However, I do find many others who have interesting ideas about a topic tend to go a little overboard trying to sell their ideas. I recently read "Why we Sleep " by Matthew Walker. To listen to him, the world is a bunch of zombies if we don't get 8 hours sleep every night.

You might be interested in Dr. Steven Park's book "Sleep Interrupted". He is an ENT and well recognized as a fair authority on UARS. In his book, he runs the reader through what an examination by him would consist of, what he would be looking for, etc.

He also does a run down on which solutions work best for lets say which physical factors.

Yes, I think with almost anyone in an 'expert' position, they seem to run with their own ideas a little to far. Heck, I've actually got Dr Park's book Sleep Interrupted (I'm only early on into it) but I even think he does the same thing (from what I've read so far.) I think that's the nature of the beast, because they all want to drive their own ideas for their own business benefit.

I do need to pick up with Sleep Interrupted. It started off focusing really heavily on reflux, which I kind of felt he was exaggerating, I think that's where I lost my interest a bit. Does he go on to discuss the more mechanical aspects of UARS and SDB, away from all of the reflux stuff?

I bought the book because I read some of his blog posts which I found really informative, but the book didn't quite seem to line up with it from what I'd read so far, but maybe I haven't given it enough chance.

Cpapian · Post by **Cpapian** » Mon Jul 30, 2018 3:56 pm

I was hoping for more from his book too. UARS is something that interests me and I thought it would have more on it, but didn't at least to my knowledge. I did find it quite informative. I do have GERD, and it has been better since treatment for OSA, so I found the explanation interesting and reasonable.

You should find chapter 20 "your stuffy nose" pretty informative. Then section 3 chapter 22 how do I know if I have a sleep breathing problem then chapters 24 and 25 medical interventions.

Chapter 22 goes into what a visit with him would be like. I think you were disappointed with your first ENT. maybe when you see your next ENT bring the book along to show him you are more than the average docile patient.

canyouhearmeaya · Post by **canyouhearmeaya** » Tue Jul 31, 2018 7:07 am

Well last night was interesting, I definitely feel I slept better as I feel better today than I did yesterday. Interestingly, I seemed to have a lot more OA's, twice as many than any other night I've had. Flow limitations obviously appear worse, because I was in 'for her', I presume it must just work on a different threshhold i.e. What it considers a 0.5 in Regular Auto is deemed a 1 in 'For Her', or something to that measure (maybe because it's working on the basis women have generally smaller airways?)

Regardless, just goes to show how numbers can be misleading with a case like this. I do actually wonder if the fact I had more OA's is actually BECAUSE I slept better.. I wonder if normally because I'm having lots of arousals which the machine doesn't show, I'm not in a deep enough state of sleep for the OA's to even occur.. and whether I actually had less RERA's last night, allowing me to stay in a deeper state, but thus leading to more apneas.

Regardless, i'm going to see with these settings for now and see how I go. If after a period of time this seems to be working well, but OA's stay higher, then I may look at bumping up the minimum pressure again to see if that a) reduces the apnea events b) improves sleep quality further.

Pugsy · Post by **Pugsy** » Tue Jul 31, 2018 7:28 am

The FL graph in the for Her mode definitely uses a different something for measurement.
I have compared both and with the regular mode my FLs are essentially non existent but in the for Her mode they are definitely more pronounced and visually just look uglier.

Now I have used Respironics machines in the past and really never had many FLs flagged...more in line with what I see in the regular ResMed mode.

So I tend to take the for HER FL graph with a grain of salt and not really give it much thought.
I am sleeping well and feeling decent.

Also..don't forget that nasal congestion can make the FL graph uglier no matter which mode but if you have any sort of nasal congestion issues going on at times during the night...the for Her mode is very likely going to magnify the ugly part of it. In other words...make mountains out of mole hills and if that mole hill doesn't seem to be creating a problem then I wouldn't try to level it.

canyouhearmeaya · Post by **canyouhearmeaya** » Tue Jul 31, 2018 8:24 am

Pugsy wrote: ↑
Tue Jul 31, 2018 7:28 am
The FL graph in the for Her mode definitely uses a different something for measurement.
I have compared both and with the regular mode my FLs are essentially non existent but in the for Her mode they are definitely more pronounced and visually just look uglier.

Now I have used Respironics machines in the past and really never had many FLs flagged...more in line with what I see in the regular ResMed mode.

So I tend to take the for HER FL graph with a grain of salt and not really give it much thought.
I am sleeping well and feeling decent.

Also..don't forget that nasal congestion can make the FL graph uglier no matter which mode but if you have any sort of nasal congestion issues going on at times during the night...the for Her mode is very likely going to magnify the ugly part of it. In other words...make mountains out of mole hills and if that mole hill doesn't seem to be creating a problem then I wouldn't try to level it.

I think what's interesting about FL's in my case at least is they are virtually nil at the beginning of the session, which suggests to me that the flow limitations by enlarge do not occur in a waking state. If congestion was the primary driving factor, i'd expect to see FLs from the moment the mask went on (unless ofcourse CPAP was CAUSING the congestion, which I don't feel it is. If anything, I'd say the humidifcation helps.)

Which leads me to believe the source of the FL's is something which changes based on sleep physiology. I really do wonder again how much roll the tongue plays in this. Ofc as you fall asleep it's easy to main good tongue posture, but once you fall asleep and everything relaxes, it's more likely to collapse back and narrow the airway, especially in REM sleep. It also seems that my events don't occur too early on in sleep, and are more frequent in later stages (when REM sleep will be more frequent and longer in duration.)

Based on the discussions of Mike Mew, it seems to me that it could be a good explanation.. which would also explain why increasing pressures don't necessarily help (as it may hold the airway open, but it doesn't prevent the tongue itself falling back and therefor the airflow itself is still restricted.)

It will be interesting to see what the ENT says Thursday, I hope this one will do a more in-depth examination and actually do a scope and/or some scans so they can more accurately evaluate my airway.

canyouhearmeaya · Post by **canyouhearmeaya** » Fri Aug 03, 2018 6:11 am

Well, the ENT appointment was a waste of time. He did a scope (out of obligation I think, because I mentioned the last ENT did jack all observation).. But the whole appointment lasted probably 7 minutes.. and he said 'that's just the way it is, everyones airway is shaped differently. Speak to the sleep lab.'

Wow. I was totally bummed out following that.. However, then I got to thinking. I started trying to get out of the box, and looking at this whole problem from angles that are being missed by medical professionals, patients, everyone.

I've come up with a theory of what might be the cause of my SDB, and I expect a lot of other people too. Especially those people that undergo treatment (CPAP etc) and yet still feel untreated and aren't getting the quality of sleep they need.

I'm going to put this to the test over the next couple of weeks, and use my CPAP data to measure the results objectively (alongside my own subjective observations).

If it works, this could be a huge discovery.. Equally, I could be totally wrong. So i'll see if I can get the result myself first, and if it pays off, I'll make every effort to get this out to everyone.

Wish me luck!

mtnguyen · Post by **mtnguyen** » Fri Nov 02, 2018 6:43 am

FYI there's a video abt nasal resistance and SA, https://www.youtube.com/watch?v=XA5Wo9IrMfI

yrnkrn · Post by **yrnkrn** » Fri Nov 02, 2018 9:53 am

canyouhearmeaya wrote: ↑
Tue Jul 31, 2018 8:24 am
Based on the discussions of Mike Mew, it seems to me that it could be a good explanation.. which would also explain why increasing pressures don't necessarily help (as it may hold the airway open, but it doesn't prevent the tongue itself falling back and therefor the airflow itself is still restricted.)

Higher EPR (or PS for Bilevel) is usually effective in solving flow limitations.

Snoregone Conclusion · Post by **Snoregone Conclusion** » Fri Nov 02, 2018 11:38 am

I've been following the various research/experimentation on UARS treatment because while I don't have it officially stated (take-home sleep study) symptoms and numbers best support that diagnosis for me.

I've had my APAP machine since 10/10/18, and I've experimented with trying to control for flow limitations, and tweaking all the knobs. EFR does seem to be a useful variable, combined with high pressure. I think there may actually be times I slept over 4 hours without waking (at least, being able to consciously remember it) a couple times. These times have happened at the highest pressures> at this time, I'm at 20 lowest, 20 highest with EPR at 3.

I feel more relaxed with the pressure high, even though I still see Flow Limitations show up (observation: I don't think they usually show up when awake, unless I'm on my back) because my body recognizes "Oh, getting enough air in, and not feeling like we're suffocating, it's good!" so I'm able to not be so aroused in sleep.

Need help, suspect UARS. Want to try APAP - need advice and guidance.

Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

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