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

OkyDoky wrote: ↑

Wed Jun 13, 2018 12:50 pm

tan wrote: ↑

Wed Jun 13, 2018 12:21 pm

There is no reliable way to measure RDI outside of the lab, is there?

In Sleepyhead you can change your events preference to RDI. Not the reliability of an EEG but could give you a good indication if your AHI is not the indicator that you need.

The only difference in my case is that SleepyHead shows the "RDI" label instead of the "AHI" one, while numbers are all the same

palerider wrote: ↑

Wed Jun 13, 2018 10:44 am

tan wrote: ↑

Wed Jun 13, 2018 7:37 am

Nothing wrong, if you have sleep apnea. But such leaks can be sleep disruptive for UARS.

No more than for sleep apnea.

Someone else may also disagree with you:

Pugsy a year ago wrote:
...The brain in UARS patients tends to over react, for lack of a better term, to things that those of us without UARS might just sleep through. UARS patients are often what I might call hyper sensitive...

tan wrote: ↑

Wed Jun 13, 2018 2:58 pm

palerider wrote: ↑

Wed Jun 13, 2018 10:44 am

tan wrote: ↑

Wed Jun 13, 2018 7:37 am

Nothing wrong, if you have sleep apnea. But such leaks can be sleep disruptive for UARS.

No more than for sleep apnea.

Someone else may also disagree with you:

Pugsy a year ago wrote:
...The brain in UARS patients tends to over react, for lack of a better term, to things that those of us without UARS might just sleep through. UARS patients are often what I might call hyper sensitive...

I guess I will put my 2 cents in since I got dragged in.
I see what Tan is saying and I see what PR is saying.

IF...big IF...someone is hypersensitive to teeny tiny leaks I would think that they would know it but maybe not. I would think they would be complaining of something related to frequent awakenings or arousals. UARS people wouldn't be the only ones though...they aren't the only people to be super sensitive to something.

For the OP here...I wouldn't automatically say that leaks are a factor here...they may or may not be and I would want to look at the flow rate and see if there was evidence of any arousals when those periods of maybe a little bit of a leak is being flagged.
I wouldn't tell someone to fix something until I saw evidence that it might need fixing.

Just because something does or doesn't impact one person doesn't mean it will do the same to the next person.

Right now the OP is having trouble just sleeping with the mask due to nasal congestion. He's got to fix that problem first.
I don't even want to get into flow rate evaluation to look for arousals until he can actually breathe better so he can sleep better.
He's brand spanking new to this therapy. The leak or not leak issue...way down the list of things to sort through.
With time and experience the leaks should reduce anyway without worrying so much about them.
My personal opinion is that he has enough stuff to deal with than worrying about teeny tiny leaks.....like actually sleeping with the mask for long enough to have something worth evaluating.
Hell, for all we know those are little mouth breathing leaks because of the nasal congestion....
The congestion has to be fixed first.

palerider wrote: ↑

Wed Jun 13, 2018 12:12 pm

tan wrote: ↑

Wed Jun 13, 2018 12:07 pm

Do you intentionally miss "in my config"? APAP (S9 at least) has no configuration for trigger/cycle.

Trigger/cycle, TiMin/TiMax has nothing to do with the actual pressure differences, and the way they're delivered.... the pressure changes are the exact same between PS and EPR, and that's the point.

Is a VPAP Auto/Vauto machine more customizeable... yes.

Is that what you said? no.

Does the customizeability make a difference in your special sparkly unicorn view of things? maybe. But the effect of the pressure changes is still the same. All trigger/cycle does is change the exact, precise moment that the pressure changes happen.

You just admitted that, due to the customizeability, VPAP's ps==3 can be different than APAP epr==3, which is what I meant when added "in my config"

canyouhearmeaya wrote: ↑

Wed Jun 13, 2018 12:46 pm

Is my logic right here: That UARS similar to OSA is often a collapse of the airway, and obviously CPAP keeps pressure up to prevent the airway collapsing..

Having impaired nasal airflow (congestion, polyps, deviated septum etc) causes reduced airflow and air pressure, therefor ALLOWING the airway to collapse/reduce, i.e. causing UARS. Therefor, potentially by fixing the restricted airflow (without CPAP) by whatever means (eg fixing congestion, removing polyps, whatever the restriction is), basically increasing the amount of air able to pass in and out of the nose, can effectively resolve the UARS?

Does that make any actual medical sense?

Also UARS pts are more sensitive to restricted airflow so they have more arousals and less hypopnea/apnea compared to OSA.

My UARS is caused by a large tongue base, which cannot be addressed adequately with pressure <16 cm.

tan wrote: ↑

Wed Jun 13, 2018 3:55 pm

You just admitted that, due to the customizeability, VPAP's ps==3 can be different than APAP epr==3, which is what I meant when added "in my config"

No, it delivers pressure the same way. I'm sorry you can't see that.

Of course, looking at reality would mess with your world view... so.. *shrug*

tan wrote: ↑

Wed Jun 13, 2018 12:35 pm

if the leaks don't bother the OP, then they're not an issue, same as with anybody.

How does he know that the leaks don't bother him? He may be just unaware of them. Isn't this UARS also about: not remembering one's frequent arousals/awakenings?

You're ASSuming that they do, you're ASSuming that everybody is just like you... without any evidence of this being so.

Telling someone new that they're suffering from TERRIBLE leaks and they MUST be brought under control, absent ANY evidence that it's an issue.... simply irresponsible.

palerider wrote: ↑

Wed Jun 13, 2018 6:58 pm

tan wrote: ↑

Wed Jun 13, 2018 12:35 pm

if the leaks don't bother the OP, then they're not an issue, same as with anybody.

How does he know that the leaks don't bother him? He may be just unaware of them. Isn't this UARS also about: not remembering one's frequent arousals/awakenings?

You're ASSuming that they do, you're ASSuming that everybody is just like you... without any evidence of this being so.

Telling someone new that they're suffering from TERRIBLE leaks and they MUST be brought under control, absent ANY evidence that it's an issue.... simply irresponsible.

Likewise it's ... simply irresponsible to be dismissive of such leaks, just because you think they are minor, just because they don't affect you. Leaks effect me, so they may affect another UARSer. I have come across several members on this board with very low AHI and everything else "within the norm" who kept sufferring, just because sleep apneacs can't get it.

I don't understand what evidence you need, if by definition UARS people are more sensitive to various sleep disturbances. Do you need evidence for that definition?

musculus wrote: ↑

Wed Jun 13, 2018 4:29 pm

canyouhearmeaya wrote: ↑

Wed Jun 13, 2018 12:46 pm

Is my logic right here: That UARS similar to OSA is often a collapse of the airway, and obviously CPAP keeps pressure up to prevent the airway collapsing..

Having impaired nasal airflow (congestion, polyps, deviated septum etc) causes reduced airflow and air pressure, therefor ALLOWING the airway to collapse/reduce, i.e. causing UARS. Therefor, potentially by fixing the restricted airflow (without CPAP) by whatever means (eg fixing congestion, removing polyps, whatever the restriction is), basically increasing the amount of air able to pass in and out of the nose, can effectively resolve the UARS?

Does that make any actual medical sense?

Also UARS pts are more sensitive to restricted airflow so they have more arousals and less hypopnea/apnea compared to OSA.

My UARS is caused by a large tongue base, which cannot be addressed adequately with pressure <16 cm.

By the way, how exactly did you arrive at 16cm? If by trial and error, absent of any "evidence", as some here wish to be demonstrated, that must have been a journey. If you reduce to 15, then do you feel it right away? Or does it take some time for symptoms to show themselves?

tan wrote: ↑

Wed Jun 13, 2018 10:21 pm

if by definition UARS people are more sensitive to various sleep disturbances. Do you need evidence for that definition?

Yes please, since everything I've seen says they're more sensitive to respiratory disturbances.

Well I tried the otrivine + Clarityn combo last night, don't feel great this morning. However:

A) Went out for dinner for a friends birthday, and ended up eating a load of food I shouldn't have, so that made me feel awful anyway. So it wasn't really the best night to run that test.
B) I felt like I could constantly feeling mucus running down my throat.. I suspect that's happening anyway somewhat, as I noticed with the CPAP once I had it on I kept wanting to swallow but never realised why. However I'm sure it seemed worse last night, even though my nose felt fairly clear, unless it's a case that the Afrin/Otrivine stops the mucus forming in your nose, but then causes it to run down your throat instead?

I also just struggled to fall asleep last night generally.

Can anyone comment on my previous post:

"Is my logic right here: That UARS similar to OSA is often a collapse of the airway, and obviously CPAP keeps pressure up to prevent the airway collapsing..

Having impaired nasal airflow (congestion, polyps, deviated septum etc) causes reduced airflow and air pressure, therefor ALLOWING the airway to collapse/reduce, i.e. causing UARS. Therefor, potentially by fixing the restricted airflow (without CPAP) by whatever means (eg fixing congestion, removing polyps, whatever the restriction is), basically increasing the amount of air able to pass in and out of the nose, can effectively resolve the UARS?

Does that make any actual medical sense?"

canyouhearmeaya wrote: ↑

Thu Jun 14, 2018 2:48 am

Can anyone comment on my previous post:

"Is my logic right here: That UARS similar to OSA is often a collapse of the airway, and obviously CPAP keeps pressure up to prevent the airway collapsing..

Having impaired nasal airflow (congestion, polyps, deviated septum etc) causes reduced airflow and air pressure, therefor ALLOWING the airway to collapse/reduce, i.e. causing UARS. Therefor, potentially by fixing the restricted airflow (without CPAP) by whatever means (eg fixing congestion, removing polyps, whatever the restriction is), basically increasing the amount of air able to pass in and out of the nose, can effectively resolve the UARS?

Does that make any actual medical sense?"

Yes, it does. There are many posts by Dr Steven Park about the importance of being able to breath well through the nose, and the importance of that for good sleep... you might want to dig around in his blog.

palerider wrote: ↑

Thu Jun 14, 2018 3:04 pm

canyouhearmeaya wrote: ↑

Thu Jun 14, 2018 2:48 am

Can anyone comment on my previous post:

"Is my logic right here: That UARS similar to OSA is often a collapse of the airway, and obviously CPAP keeps pressure up to prevent the airway collapsing..

Having impaired nasal airflow (congestion, polyps, deviated septum etc) causes reduced airflow and air pressure, therefor ALLOWING the airway to collapse/reduce, i.e. causing UARS. Therefor, potentially by fixing the restricted airflow (without CPAP) by whatever means (eg fixing congestion, removing polyps, whatever the restriction is), basically increasing the amount of air able to pass in and out of the nose, can effectively resolve the UARS?

Does that make any actual medical sense?"

Yes, it does. There are many posts by Dr Steven Park about the importance of being able to breath well through the nose, and the importance of that for good sleep... you might want to dig around in his blog.

Interesting, I read some of his posts on UARS which I found really interesting, but hadn't seen the nasal breathing specific ones - I'll check them out!

Hmm, fingers crossed the ENT can find something, and solve it!

Well at this stage, I've decided to return and get a refund on the CPAP, and I'm going to pay to see the ENT privately (hopefully next week) and see if he can find anything.

As it this stage, it's evident that I have breathing issues impacting my sleep, but equally, I don't know yet that CPAP is the answer, and maybe the ENT will find a solution outside of CPAP.

Equally, I can always re-order the CPAP if I decide to try that route again, which certainly is a possibility as I don't really feel I had enough chance to even give it a fair shot. If I do, I expect I'll try a FFM, as it seems that part of my issue with CPAP may be restrictions in nasal airflow.. but equally, it may be that my entire problem lies within that, and if I can find a solution to that, then no CPAP is required.

Fingers crossed the ENT is good!

canyouhearmeaya wrote: ↑

Thu Jun 14, 2018 3:38 pm

Well at this stage, I've decided to return and get a refund on the CPAP, and I'm going to pay to see the ENT privately (hopefully next week) and see if he can find anything.

As it this stage, it's evident that I have breathing issues impacting my sleep, but equally, I don't know yet that CPAP is the answer, and maybe the ENT will find a solution outside of CPAP.

Equally, I can always re-order the CPAP if I decide to try that route again, which certainly is a possibility as I don't really feel I had enough chance to even give it a fair shot. If I do, I expect I'll try a FFM, as it seems that part of my issue with CPAP may be restrictions in nasal airflow.. but equally, it may be that my entire problem lies within that, and if I can find a solution to that, then no CPAP is required.

Fingers crossed the ENT is good!

Did you check your Friedman tongue score?