UARS Pressure Setting/Titration

[sleeprefliefforme]

For those of you with UARS that use CPAP I was wondering what pressure has provided you with relief. If you could also post your Respiratory Arousal index that would be useful.

I recently had a sleep study that showed only 1 apnea/hypopnea but I had a respiratory arousal index of 9.0 (which is kind of low I think), but I have a lot of daytime tiredness and only had 12.5% SWS and 10.6% REM sleep.

My pressure was never titrated that night because it didn't seem like full blown apnea and I'm having some problems with insurance atm with going in to get my UARS pressure titrated so I'm adjusting pressures on my own to find relief

So far I've been using a pressure of 10.0 for a week, which hasn't made much of a difference yet, but I heard it can take at least a month to feel a difference.

Are pressures for UARS usually lower than that for full blown sleep apnea and what is the normal range of pressures if there is such a thing?

Also, are there any problems with using too high of a pressure other than the discomfort involved?

I was considering self-titrating things by using a high pressure for a month to overkill the problem and then just go down a little bit at a time until I find it not working as well.

Thanks for any help you can provide.

[mellabella]

Some quick notes:

1) Do you have a data capable machine? The big potential problem with self-titration is that too high of a pressure can sometimes create central apneas, which is a serious problem indeed.

2) I have UARS (though I had a higher rate of respiratory arousals, and about one full obstructive apnea per hour, and you are getting twice as much SWS and REM sleep as I do even with treatment!)--however, my pressure needs won't necessarily match yours, since the anatomical cause/degree may be different. That being said, I am at a relatively high pressure now that I am at a correct titration.

3) Are you working with a doctor on this-- even if it's just a general practitioner?

[Snoredog]

[quote="sleeprefliefforme"]For those of you with UARS that use CPAP I was wondering what pressure has provided you with relief. If you could also post your Respiratory Arousal index that would be useful.

I recently had a sleep study that showed only 1 apnea/hypopnea but I had a respiratory arousal index of 9.0 (which is kind of low I think), but I have a lot of daytime tiredness and only had 12.5% SWS and 10.6% REM sleep.

My pressure was never titrated that night because it didn't seem like full blown apnea and I'm having some problems with insurance atm with going in to get my UARS pressure titrated so I'm adjusting pressures on my own to find relief

So far I've been using a pressure of 10.0 for a week, which hasn't made much of a difference yet, but I heard it can take at least a month to feel a difference.

Are pressures for UARS usually lower than that for full blown sleep apnea and what is the normal range of pressures if there is such a thing?

Also, are there any problems with using too high of a pressure other than the discomfort involved?

I was considering self-titrating things by using a high pressure for a month to overkill the problem and then just go down a little bit at a time until I find it not working as well.

Thanks for any help you can provide.

[sleeprefliefforme]

1) Yes, I have a REMStar Auto M series along with the necessary software. I just need to get a cable in order to look at the data on my PC.

2+3) I had my first sleep study + mslt 2 years ago after which I was diagnosed with narcolepsy by a board certified pulmonologist. Treatment w/ Xyrem + Modanifil brought moderate relief, but I was still foggy and tired throughout the day, though without the sleep attacks or cataplexy characteristic of a a person with narcolepsy.

Saw another board certified sleep doc about 6 months ago who noticed the respiratory arousals and a comment about UARS on my original sleep study report (which my 1st doc never addressed) and he proposed an auto CPAP which my insurance covered. I tried it for a month with no difference.

Now 2 months ago I moved to a new area and was able to see a board certified pulm at the Johns Hopkins Sleep Disorders Center who told me that an auto CPAP would do nothing for UARS and respiratory related arousals. I had a new sleep study + mslt which made him think i don't have narcolepsy but just UARS and chronic insomnia (which is the diagnosis that has made the most sense to me so far considering what i know about all these different problems). So he wrote a script for a CPAP titration, but my insurance won't cover it b/c they said I just had a sleep study that didn't meet the requirements for having sleep apnea and thus im ineligible for a titration study. However, they continue to pay for my CPAP machine for whatever reason, which i'm lucky for.

So I'm stuck in a unique situation of having a CPAP machine and no way to get a pressure professionally titrated that will take care of my respiratory arousals.

Thus I'm asking for advice on what sort of pressures work for people and any possible way that I can titrate things on my own and hopefully get some good quality sleep.

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): cpap machine, auto cpap, Titration, CPAP, auto

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): cpap machine, auto cpap, Titration, CPAP, auto

[mellabella]

Now let's hear all the UARS successful treatment stories, please post them here:
....

[Mellabella raises her hand and waves]

This isn't the right venue to be discussing whether or not UARS "exists", what it is, etc., but I can tell you (and have posted about) the fact my quality of life went up about 300% (with real tangible gains in physical, mental, cognitive areas, including no longer having a diagnosable anxiety disorder, being able to run 5K at a time, multiple times a week, the ability to do 5 things after work instead of 0-1, the ability to stay up past 9pm, etc.) since being treated for UARS with CPAP. I'm still struggling, but I wouldn't give up the gains for anything, I couldn't have gotten them any other way (I tried everything else for 10+ years prior to sleep study + diagnosis), and there's nothing psychosomatic about the changes I've seen (even though I was 95% compliant the first two years, I didn't get any benefits until my titration value was almost doubled).

So I'm just a layman who doesn't worry about which docs are arguing about whether or not UARS exists....but I've been willing to self-pay thousands of dollars for supplies, and even though the masks beat up my face and look funny at night and the treatment puts a damper on traveling and camping and I'm still nowhere near 100% in the mornings, you'll pry my xPap therapy out of my cold, dead hands, whether or not anyone thinks UARS is up there with the Tooth Fairy and Santa Claus.


But back to the question:

Whoever looked at your original study results surely would field a phone call and suggest a starting pressure, right? At the very least, since you have a data capable machine, try to talk your GP into monitoring the results as you try higher pressure levels, so you make sure you're avoiding centrals.

[mellabella]

...you can also apply for assistance to pay out of pocket for a titration through awakeinamerica.org.

[Snoredog]

1) Yes, I have a REMStar Auto M series along with the necessary software. I just need to get a cable in order to look at the data on my PC.

2+3) I had my first sleep study + mslt 2 years ago after which I was diagnosed with narcolepsy by a board certified pulmonologist. Treatment w/ Xyrem + Modanifil brought moderate relief, but I was still foggy and tired throughout the day, though without the sleep attacks or cataplexy characteristic of a a person with narcolepsy.

Saw another board certified sleep doc about 6 months ago who noticed the respiratory arousals and a comment about UARS on my original sleep study report (which my 1st doc never addressed) and he proposed an auto CPAP which my insurance covered. I tried it for a month with no difference.

Now 2 months ago I moved to a new area and was able to see a board certified pulm at the Johns Hopkins Sleep Disorders Center who told me that an auto CPAP would do nothing for UARS and respiratory related arousals. I had a new sleep study + mslt which made him think i don't have narcolepsy but just UARS and chronic insomnia (which is the diagnosis that has made the most sense to me so far considering what i know about all these different problems). So he wrote a script for a CPAP titration, but my insurance won't cover it b/c they said I just had a sleep study that didn't meet the requirements for having sleep apnea and thus im ineligible for a titration study. However, they continue to pay for my CPAP machine for whatever reason, which i'm lucky for.

So I'm stuck in a unique situation of having a CPAP machine and no way to get a pressure professionally titrated that will take care of my respiratory arousals.

Thus I'm asking for advice on what sort of pressures work for people and any possible way that I can titrate things on my own and hopefully get some good quality sleep.

well all them board certifieds did was take your money even the Sleep Center that did your final study from seeing UARS on the first PSG.

The only treatment suggested for that syndrome is bilevel with a PB425. My understanding is you take your current 90% CPAP pressure and set your EPAP to that, then you increase the Sensitivity setting on the 425 and bump IPAP pressure support way up higher than EPAP like 8 to 10 cm higher.

Only place able to titrate to know if that setting is working is Stanford Sleep Center as they are the only one that believes in UARS as a disorder.

Getting insurance to cover all that, well that may be a different story.

[Snoredog]

Now let's hear all the UARS successful treatment stories, please post them here:
....

[Mellabella raises her hand and waves]

This isn't the right venue to be discussing whether or not UARS "exists", what it is, etc., but I can tell you (and have posted about) the fact my quality of life went up about 300% (with real tangible gains in physical, mental, cognitive areas, including no longer having a diagnosable anxiety disorder, being able to run 5K at a time, multiple times a week, the ability to do 5 things after work instead of 0-1, the ability to stay up past 9pm, etc.) since being treated for UARS with CPAP. I'm still struggling, but I wouldn't give up the gains for anything, I couldn't have gotten them any other way (I tried everything else for 10+ years prior to sleep study + diagnosis), and there's nothing psychosomatic about the changes I've seen (even though I was 95% compliant the first two years, I didn't get any benefits until my titration value was almost doubled).

So I'm just a layman who doesn't worry about which docs are arguing about whether or not UARS exists....but I've been willing to self-pay thousands of dollars for supplies, and even though the masks beat up my face and look funny at night and the treatment puts a damper on traveling and camping and I'm still nowhere near 100% in the mornings, you'll pry my xPap therapy out of my cold, dead hands, whether or not anyone thinks UARS is up there with the Tooth Fairy and Santa Claus.


But back to the question:

Whoever looked at your original study results surely would field a phone call and suggest a starting pressure, right? At the very least, since you have a data capable machine, try to talk your GP into monitoring the results as you try higher pressure levels, so you make sure you're avoiding centrals.

[Snoredog]

Here, I'll even toss in the link so you get an idea of what it is:

http://www.sleepdynamictherapy.com/cate ... -syndrome/

[sleeprefliefforme]

[quote="Snoredog"][quote="mellabella"][quote="Snoredog"]


I think it is the PERFECT venue to discuss it.

1. What are the characteristics of UARS that differ from ordinary OSA?
2. How is it treated? You say CPAP, I'm more inclined to believe in Santa Claus.
3. IF treated with CPAP, how do you know it is addressing UARS and not OSA?
4. How does UARS treatment differ from OSA treatment?
5. Other than taking your word for it, how does one know treatment is being effective for UARS?

_________________

1) According to this link (http://www.sleepdynamictherapy.com/2007 ... y-results/) UARS is just part of a continuim that includes apneas and hypopneas. UARS is a term interchangeable with flow limitations and RERA's which are measured by most sleep centers today. Most cases of OSA include UARS/RERA/Flow Limitation.

On my sleep study results apneas were scored as a cessation of air flow for 10 or more seconds. Hypopneas were scored as a reducation in nasal cannula pressure or effort channels for 10 or more seconds with a 4% or greater desaturation, and RERA's (same as flow limitation and the thing that makes up UARS) were scored as a reduction in the nasal cannula pressure or increasing respiratory effort for greater than 10 seconds leading to an EEG arousal.

2) According to the same link its treated in exactly the same was as apnea, which is with CPAP, although the doctor in question believes that BiPAP works especially well for UARS.

3) A reduction in the number of EEG arousal from RERA's and a reduction in flow limitation during sleep

4) It doesn't.

5) There are numerous articles in journals assessing the efficacy of CPAP treatment for UARS. Search for upper airway resistance syndrome on google scholar and you can find many articles although i doubt you'll be able to access them.

[Snoredog]

[quote="sleeprefliefforme"][quote="Snoredog"][quote="mellabella"][quote="Snoredog"]


I think it is the PERFECT venue to discuss it.

1. What are the characteristics of UARS that differ from ordinary OSA?
2. How is it treated? You say CPAP, I'm more inclined to believe in Santa Claus.
3. IF treated with CPAP, how do you know it is addressing UARS and not OSA?
4. How does UARS treatment differ from OSA treatment?
5. Other than taking your word for it, how does one know treatment is being effective for UARS?

_________________

1) According to this link (http://www.sleepdynamictherapy.com/2007 ... y-results/) UARS is just part of a continuim that includes apneas and hypopneas. UARS is a term interchangeable with flow limitations and RERA's which are measured by most sleep centers today. Most cases of OSA include UARS/RERA/Flow Limitation.

On my sleep study results apneas were scored as a cessation of air flow for 10 or more seconds. Hypopneas were scored as a reducation in nasal cannula pressure or effort channels for 10 or more seconds with a 4% or greater desaturation, and RERA's (same as flow limitation and the thing that makes up UARS) were scored as a reduction in the nasal cannula pressure or increasing respiratory effort for greater than 10 seconds leading to an EEG arousal.

2) According to the same link its treated in exactly the same was as apnea, which is with CPAP, although the doctor in question believes that BiPAP works especially well for UARS.

3) A reduction in the number of EEG arousal from RERA's and a reduction in flow limitation during sleep

4) It doesn't.

5) There are numerous articles in journals assessing the efficacy of CPAP treatment for UARS. Search for upper airway resistance syndrome on google scholar and you can find many articles although i doubt you'll be able to access them.

[Snoredog]

The point to this?

1. You are here asking about ideal pressure for CPAP to address UARS (very valid question).

2. You were sent home with a UARS notation on your last PSG with therapy suggested being CPAP. Even the blog site suggests Bilevel is the preferred treatment for UARS. IPAP treats HI and FL, VS. IF you are going to address events making up UARS you are going to do that with IPAP adjustments.

3. You cannot SEE if you have UARS unless you have a EEG. You cannot see how your Sleep Architecture is doing without an EEG, you cannot see if those micro arousals associated with those mini-Flow Limitations have even been addressed or eliminated with CPAP.

4. How was UARS noted on your PSG? Did it say micro arousals seen "suggesting" UARS? If SO, WHY didn't the Sleep Lab titrate you with Bilevel in an attempt to eliminate them? (if Dr. K's theory is correct).

Does your last PSG say "UARS addressed with CPAP and associated micro arousals eliminated?"

Because according to past Dr. K posts, spontaneous arousals are a misnomer if UARS is being addressed.

What does your PSG say? Because if you are here looking for a new ideal pressure setting to address UARS there is no way to know that. If you are here with decent AHI numbers and still fatigued that would be another clue they are NOT being addressed with CPAP. If you are here for that reason with a CPAP it ain't gonna happen according to Dr. K, you need Bilevel and a titration in the lab so they can see the EEG information.

Now Dr. K suggests that CPAP can turn a Apnea into a Hypopnea and a Hypopnea into a Flow Limitation and what you can't see is the even smaller resistance a mini-Flow Limitation which is the guy that makes up UARS and does all the damage to Sleep Architecture. I have to believe that part because we have seen here Bipap Auto reports with FL's showing up at 17 and 18 cm pressure (Wally's report is one example). So FL's can show up at any pressure even 18. Look at any Remstar Auto report, it will have FL's shown on it, not everyone's but quite a few (crossfit's is one example). Does crossfit have UARS? if they have FL on their reports? What about RG's 420e Flow limited Runs, how does that differ?

Does having FL show up on your report and spontaneous arousals noted on your PSG determine you have UARS? If I add up my AHI and RERA count, I'm well over RDI of 110. Yep and you guessed it, I rarely wake up fully refreshed no matter how much sleep I get and how low my AHI gets.

Is CPAP therapy addressing my UARS? I KNOW it doesn't, they couldn't eliminate it in my 4th PSG bilevel titration in fact the tech pointed out those arousals at 27 per hour and what it was doing to my sleep architecture. When I asked further about them he said your guess is good as mine, snoring? medication? muscle pains?, he wasn't withholding any information, that was my 4th PSG there, doctor told him to tell me exactly what was up.

So this is why I am so skeptical on bilevel addressing and eliminating UARS, in fact UARS SMOUARS!! I don't care what you call it, it is those spontaneous arousals I'd like to eliminate because that is the last thing known that is destroying my Sleep Architecture for the past 8 years.

[jnk]

Snoredog,

Please pardon my butting in. I hate to interupt you when you're in the middle of doing your tough love thing in helping sleeprefliefforme (and I do see how you are being very helpful, believe me), but . . .

1. Do you agree with doctor what's-his-name that addressing minor flow limitations might do some people some good?

2. Do you think that ratcheting up pressures in a bilevel or increasing the distance between ipap and epap beyond the point of lowering AHI might be useful things to do, or no?

I'm just curious, because I know you have thoughtful (and uncommonly logical) reasons for everything you say. And based on other things you've said, I'd sincerely benefit from your opinion on that.

jnk

[Snoredog]

Snoredog,

Please pardon my butting in. I hate to interupt you when you're in the middle of doing your tough love thing in helping sleeprefliefforme (and I do see how you are being very helpful, believe me), but . . .

1. Do you agree with doctor what's-his-name that addressing minor flow limitations might do some people some good?

I'm skeptical that CPAP even works for UARS. Reason is I understand his theory but have not seen any evidence showing me where ratcheting up IPAP pressure eliminates the events previously referred to as "spontaneous".

I understand if you can correlate those spontaneous events to an event like a "mini flow limitation" they are no longer considered "spontaneous" or are what he refers to as UARS. But I have also NOT seen any physical evidence in the form of a EEG to support that theory either.

What is so difficult about showing a PSG on CPAP with residual "spontaneous" arousals seen, then a Bilevel titration showing pressures designed to treat UARS with the same spontaneous arousals eliminated?

Come on, that shouldn't be all that difficult to obtain, AASM accredited Sleep Labs are going up faster than Burger joints and those have the latest and greatest technology inside,

I find it difficult to believe in 2008 they cannot detect these "mini-Flow Limitations" associated to UARS to where a patient leaves the lab with the "suggestion" that residual events are UARS and the doctor sends the patient home with a plain jane CPAP to address it. That is what the OP is asking about here and we see it nearly every day here with patients fully compliant with a low AHI and still experiencing daytime fatigue.

So WHO is NOT doing their job here? The Sleep Lab? by not attempting to eliminate those UARS events? Or the doctor not knowing what the hell he is doing? Does every patient need to buy a book to find out about UARS?

2. Do you think that ratcheting up pressures in a bilevel or increasing the distance between ipap and epap beyond the point of lowering AHI might be useful things to do, or no?

I KNOW IPAP pressure addresses Hypopnea and Flow Limitation, logic says it should also address those "mini Flow Limitations" what Dr. K suggests are associated with UARS.

I'm just curious, because I know you have thoughtful (and uncommonly logical) reasons for everything you say. And based on other things you've said, I'd sincerely benefit from your opinion on that.

jnk

It is my belief that when a patient sees a doctor about a sleep disorder with the report of excessive daytime fatigue, attends an overnight PSG study in an accredited lab that they should not be given sub-optimal treatment afterward and then left to fend for themselves when it doesn't work.

And that is what you are seeing here, a patient given a suggestion of UARS on their PSG by a licensed doctor then issuing a standard CPAP machine to address it.

They should have:

Been scheduled with a new Bilevel titration thought to address UARS. IF UARS is the problem are there associated arousals? Did they determine that? If so WHY didn't the sleep lab attempt to titrate for it? Dr. K says you can address it with Bilevel.

So the patient originating this thread will be just spinning their wheels trying to eliminate UARS with CPAP (according to Dr. K's theory).

[sleeprefliefforme]

Thanks for your help Snoredog. Even if science hasn't caught up with what you're saying, I think I've gotten a bit of an idea.

I think I'll give a call to my sleep doc tomorrow to see if he can get me a BiPap machine and try one last time with the insurance company to get a BiPap titration study done. I'll also bring up the fact that I'd like him to emphasize to the sleep techs that they are to concentrate on eliminating any mini flow limitations that may show up as part of my titration.

Its really a sad state of affairs to have to put in this much research and effort into getting some help when you see sleep center popping up all over the place as you mentioned.