Vauto mode vs S mode for UARS

[slowriter]

You pretty much have to toss that ResMed titration guide out the window. Remember it was written for OSA related issues.

The Resmed titration guide specifies to increase IPAP/PS to address RERAs, which is our goal in treating UARS.

For the OP, what I see in what you posted is effectively 0 FL at those PS settings (6.0 and 6.6); the higher one likely more than you need in fact.

What's up with the long gaps in your therapy?

And how long have you been in on PAP therapy? For me, it took many weeks, even months, to adapt.

So patience, along with careful attention to sleep hygiene, is important too.

[slowriter]

S mode does not include FL tracking, which is arguably the most useful data for UARS folks

My ResMed AirCurve VAuto gives me a FL graph in S mode. I am wondering why yours doesn't.

When I last checked this, I had an earlier firmware version, so that could be it.

[gobucks]

Unwanted daytime symptoms: Waking up unrefreshed, headaches, joint pain, muscle pain, general malaise, tiredness, sensitivity to light, strong urge to take naps every day (though I dont anymore to improve sleep hygiene), difficulty concentrating, low sex drive. And really just feeling super spaced out, sleepy and feeling like I need to be closing my eyes out of exhaustion constantly. I also feel like I dont recover from my workouts at all.

Hmmmm....tossing and turning a lot during the night and remembering it...means fragmented sleep for sure. Been there and done that myself. Fragmented sleep for any reason will mean we don't feel so great during the day. We just don't get the normal sleep cycles for the restorative powers of sleep to work their magic.

Have you done the work to look for evidence of arousals in your flow rate breathing and maybe just counted the arousals?
http://freecpapadvice.com/sleepyhead-free-software
I have arthritis so some pain issues and I toss and turn a lot. I always have a lot more arousals than I might remember when I do the work and zoom in just to look for arousal/awake breathing. Give me a bit and I will get you some examples to look for.
On a "bad" night I might have 30 to 40 such times which means my sleep is highly fragmented. Now in my case I know pretty much what causes the arousals and it's a battle I realize I will always face. I am 68 years old now and my back and pelvis is eat up with arthritis and I hurt.

Your symptoms also sound a lot like Chronic Fatigue Syndrome or Fibromyalgia so you might look at those diagnoses as well.
Unfortunately a lot of the times the meds prescribed for those diagnoses also come with some pretty ugly baggage in terms of how they make us feel and actually mess with sleep quality as well. Been there and done that myself. Just tried one this past July that was horrible. Damned if you do and damned if you don't kind of thing.

I have not looked through my flow rate for arousals. I will give that a try.

Yeah my symptoms do sound like CFS, Fibromyalgia. I am really hesitant to go toward those diagnoses quite yet as UARS can be misdiagnosed as such. Maybe this is not how I should be thinking about it, but accepting a CFS, fibro diagnosis is like accepting that I feel tired and shitty all the time with no real solution. To me they seem like a catch all diagnosis. I want out of this. I want to live normally and I wont accept anything less. Again, may not be realistic but its how I feel right now.

[gobucks]

You pretty much have to toss that ResMed titration guide out the window. Remember it was written for OSA related issues.

The Resmed titration guide specifies to increase IPAP/PS to address RERAs, which is our goal in treating UARS.

For the OP, what I see in what you posted is effectively 0 FL at those PS settings (6.0 and 6.6); the higher one likely more than you need in fact.

What's up with the long gaps in your therapy?

And how long have you been in on PAP therapy? For me, it took many weeks, even months, to adapt.

So patience, along with careful attention to sleep hygiene, is important too.

The long gaps as in the gaps between having my machine on and off during the night?

I have been on PAP for about 3 months. First with an auto Dreamstation APAP, then dreamstation bipap, and now a resmed aircurve 10 Vauto. Only in the past week or so have I been able to get my AHI from about 3 or 4 with my previous machines to under .5 with my Aircurve.

Would it take time to notice the difference between 3-4 AHI and .5? Am I just not giving it enough time to feel better AHI wise? Think it would be reasonable if I reset my "time to feel better" clock and give it another 3 months?

[Pugsy]

The Resmed titration guide specifies to increase IPAP/PS to address RERAs, which is our goal in treating UARS.

Yep...but if we aren't having any then they aren't a problem....supposedly anyway.
Like you and I have discussed before though...I take the RERA flagging with a grain of salt anyway. Until the machine itself can determine for sure if we are asleep or not it's at best and educated guess. To be a RERA for sure there has to be an arousal from sleep related to an airway issue and we for sure have to be able to establish sleep status. The machine can't do that.
I have seen no evidence here that RERAs were
1....a problem at lower PS
2....the titration guide is still mainly for OSA stuff...not UARS
3....the titration guide was designed as a cheat sheet for in lab titrations where the tech should be able to know for sure if someone was asleep or not and if they see an arousal they can document for sure the arousal was related to some sort of airway issue. We simply don't have the data available that the lab tech has available.

So while a useful tool maybe....it's certainly not the gospel if someone only has UARS....and it comes with some pretty important limitations when used in a DIY setting.

EPAP and not IPAP is still basic 101 starting point for holding the airway open in the first place. Use a PS that is comfortable and doesn't create a problem and mess with EPAP is what I would do if I was going down the DIY UARS road.

[Pugsy]

The long gaps as in the gaps between having my machine on and off during the night?

Why is it off?
Are you asleep or awake when it is off?
The gap itself points to again fragmented sleep whatever the reason and poor sleep quality. Poor sleep architecture. Bad sleep.
Why is there bad sleep?

And yes....it can unfortunately take months and months to see or feel the low numbers and that's assuming the unwanted symptoms are airway related and bad sleep from something else isn't a factor.

I don't blame you for not wanting to go down the CFS or fibromyalgia road. I have resisted it myself mainly because whatever is offered to help comes with so much poor sleep baggage I have felt the cure is worse than the disease.

You know what I found helps me with the pain related arousals as much as anything and doesn't come with a lot of ugly baggage (for me anyway)....a little Benadryl taken at bedtime...it helps me sleep just a little more soundly so I don't have quite so many wake ups tossing and turning from the pain and trying to find a comfortable position. And the morning hangover is minimal and goes away fairly quickly.
If you look at most OTC sleep aids...Benadryl/diphenhydramine is the main active ingredient.

[Miss Emerita]

Unwanted daytime symptoms: Waking up unrefreshed, headaches, joint pain, muscle pain, general malaise, tiredness, sensitivity to light, strong urge to take naps every day (though I dont anymore to improve sleep hygiene), difficulty concentrating, low sex drive. And really just feeling super spaced out, sleepy and feeling like I need to be closing my eyes out of exhaustion constantly. I also feel like I dont recover from my workouts at all.

I'm struck by your mention of joint pain and sensitivity to light. Have you been tested for autoimmune diseases of the connective tissue? These include, but are not limited to, rheumatoid arthritis; fatigue and disturbed sleep are characteristic of many of them.

I'll also just throw this out there:

https://www.jrheum.org/content/38/12/2653

[gobucks]

The long gaps as in the gaps between having my machine on and off during the night?

Why is it off?
Are you asleep or awake when it is off?
The gap itself points to again fragmented sleep whatever the reason and poor sleep quality. Poor sleep architecture. Bad sleep.
Why is there bad sleep?

And yes....it can unfortunately take months and months to see or feel the low numbers and that's assuming the unwanted symptoms are airway related and bad sleep from something else isn't a factor.

I don't blame you for not wanting to go down the CFS or fibromyalgia road. I have resisted it myself mainly because whatever is offered to help comes with so much poor sleep baggage I have felt the cure is worse than the disease.

You know what I found helps me with the pain related arousals as much as anything and doesn't come with a lot of ugly baggage (for me anyway)....a little Benadryl taken at bedtime...it helps me sleep just a little more soundly so I don't have quite so many wake ups tossing and turning from the pain and trying to find a comfortable position. And the morning hangover is minimal and goes away fairly quickly.
If you look at most OTC sleep aids...Benadryl/diphenhydramine is the main active ingredient.

Not sure. I take it off subconsciously most of the time. And if I take it off for a real reason, I forget to put it back on in my sleepy daze. I will try to work on it.

Yes I tend to agree with you on CFS/Fibro. It largely does not change anything to have that diagnosis. Your problems will still be there. and the help offered does not see worthwhile when you introduce all kinds of other problems. DId you ever go down that route despite resisting?

Benadryl usually helps me feel like I sleep better too but people always told me to not take it for sleep. Think its not as bad as people say? Might give that a shot again too for a bit.

[gobucks]

Unwanted daytime symptoms: Waking up unrefreshed, headaches, joint pain, muscle pain, general malaise, tiredness, sensitivity to light, strong urge to take naps every day (though I dont anymore to improve sleep hygiene), difficulty concentrating, low sex drive. And really just feeling super spaced out, sleepy and feeling like I need to be closing my eyes out of exhaustion constantly. I also feel like I dont recover from my workouts at all.

I'm struck by your mention of joint pain and sensitivity to light. Have you been tested for autoimmune diseases of the connective tissue? These include, but are not limited to, rheumatoid arthritis; fatigue and disturbed sleep are characteristic of many of them.

I'll also just throw this out there:

https://www.jrheum.org/content/38/12/2653

I have been tested generally for autoimmune issues. Sed Rate, Lyme, ANA, Rheumatoid Factor, CRP, CCP. All clean.

Im not sure if I know what autoimmune diseases of the connective tissue are specifically. What are examples of that?

I have an appointment with a Rheumatolgist in February at the recommendation of a friend who is a retired infectious disease doctor. Just to give them the whole picture and see if they have any ideas.

I have some cyclobenzaprine on hand so I will see if I can take some and see if that helps. Very interesting information. Thank you for sharing.

[Pugsy]

Benadryl usually helps me feel like I sleep better too but people always told me to not take it for sleep. Think its not as bad as people say? Might give that a shot again too for a bit.

I don't think it is as bad as some people might say as long as you don't have a problem taking it. Some people shouldn't be taking antihistamines for some reason or other. I mean think about it.... Diphenhyramine is the main ingredient in most OTC sleep aids...so....the other common ingredient is Doxylamine succinate. If it was bad for us and sleep why is it in the OTC sleep aids??? I go for the cheaper plain generic Benadryl all by itself and not the expensive OTC sleep aids.

Now some people like Melatonin but I had a problem with it myself as it caused bad vertigo (known potential side effect) and besides it's mainly for help in falling asleep and not so much for staying asleep but they now have a sustained release version available I think.

Never had much luck with the Valerian root stuff. Trust me...tried a lot of stuff to help me "sleep better through the pain" and Benadryl seems to work decently without a lot of negative side effects for me anyway.

Now I did do the amitryptiline at 10 mg dose at bedtime for a while but while it helped with the sleeping through the pain...I was a walking zombie for half the next day and I just didn't like that feeling. I figure it doesn't do me much good to sleep better if I feel like a zombie during the day.

[Miss Emerita]

I have been tested generally for autoimmune issues. Sed Rate, Lyme, ANA, Rheumatoid Factor, CRP, CCP. All clean.

Im not sure if I know what autoimmune diseases of the connective tissue are specifically. What are examples of that?

I have an appointment with a Rheumatolgist in February at the recommendation of a friend who is a retired infectious disease doctor. Just to give them the whole picture and see if they have any ideas.

I have some cyclobenzaprine on hand so I will see if I can take some and see if that helps. Very interesting information. Thank you for sharing.

CT diseases include rheumatoid arthritis, lupus, scleroderma, Sjogren's syndrome, Hashimoto's thyroiditis, and some others. It's pretty common for CT disease symptoms not to fit clearly into one of these profiles, so there's also mixed CT disease and undifferentiated CT disease.

You got good screening tests. It might be worth having the ANA test repeated, and checking whether they're using the indirect immunofluorescence method for analysis -- supposedly the gold standard. But some CT patients test negative for ANA, and some non-CT patients test positive for ANA -- frustrating like so much else. But be sure to mention to the doctor that you have joint pain (if it's bilateral, say so) and photosensitivity.

The "very low dose" of cyclobenzaprine can call for some pill-splitting. VLD is somewhere between 1 and 4 mg, and the smallest I can get at Kaiser is 5 mg. (I'm using it for a different problem.)

[mper!?]

If I had UARS or suspected I had UARS this is what I would do.

Then I would systematically start increasing the minimum EPAP and choose a PS (when using bilevel) that I was the most comfortable with and do one week experiments at that EPAP minimum and keep a detailed log of the results in terms of sleep quality and how I felt.
Historically pretty much all the people here who have documented UARS end up needing a lot more minimum EPAP....in fixed mode or in auto mode... There are people who have reported having the pressure titrated using a Pes device in place in a lab and the pressure needed to deal with UARS might end up being a lot higher. One person I remember said they needed 13 cm and the machine in auto mode only would go to 7 cm.
---------------------------------------------------------------
Hi, Pugsy, gobucks
_ very interesting discussions downhere; new hopes for me!.... I am an UARS (some minor OSA) and RLS. After 2.5 years struggling on titrations (waisted time with CPAP and APAP) and have gotten the best thus far, on my current EPAP: 11.6, PS: 4.4, EPAP:7.2 (not allowed any deleterious fluctuation); Vauto Mode;
_ Thus far, I got somoe 80-90% solution for my UARS, pretty much all nights. However, this remaining 10 to 20% (unresolved unflagged flow restrictions; My Max FL is always < 0,1, and p95: zero) sometimes are disasterous. They are associated with REM interruptions some 2 to 3 times at night, leading me to wakeup and making trips to toilet.
_ like gobucks, I used the Resmed S titration and got these numbers. Trying to increase IPAP > 11.6 (as would be recommended by Resmed titration) does not pay off leaks (FFM) and more sleep instabilities;
_ I feel I could improve my respiration, and you guys tip me to this simple thing I had not tried yet: just increase EPAP. I will do it and report back

Very grateful

[gobucks]

If I had UARS or suspected I had UARS this is what I would do.

Then I would systematically start increasing the minimum EPAP and choose a PS (when using bilevel) that I was the most comfortable with and do one week experiments at that EPAP minimum and keep a detailed log of the results in terms of sleep quality and how I felt.
Historically pretty much all the people here who have documented UARS end up needing a lot more minimum EPAP....in fixed mode or in auto mode... There are people who have reported having the pressure titrated using a Pes device in place in a lab and the pressure needed to deal with UARS might end up being a lot higher. One person I remember said they needed 13 cm and the machine in auto mode only would go to 7 cm.
---------------------------------------------------------------
Hi, Pugsy, gobucks
_ very interesting discussions downhere; new hopes for me!.... I am an UARS (some minor OSA) and RLS. After 2.5 years struggling on titrations (waisted time with CPAP and APAP) and have gotten the best thus far, on my current EPAP: 11.6, PS: 4.4, EPAP:7.2 (not allowed any deleterious fluctuation); Vauto Mode;
_ Thus far, I got somoe 80-90% solution for my UARS, pretty much all nights. However, this remaining 10 to 20% (unresolved unflagged flow restrictions; My Max FL is always < 0,1, and p95: zero) sometimes are disasterous. They are associated with REM interruptions some 2 to 3 times at night, leading me to wakeup and making trips to toilet.
_ like gobucks, I used the Resmed S titration and got these numbers. Trying to increase IPAP > 11.6 (as would be recommended by Resmed titration) does not pay off leaks (FFM) and more sleep instabilities;
_ I feel I could improve my respiration, and you guys tip me to this simple thing I had not tried yet: just increase EPAP. I will do it and report back

Very grateful

Glad to hear this has been helpful to others! are you on Vauto or fixed (s) mode right now? what has your flow limitation chart looked like when it was good and when it was bad?

unrelated to your comments, I have been met with some heavy aerophagia as my pressure has increased. I have not been getting any centrals at all but this damn gas is so annoying. Should I try the remedies and if that doesnt work, decrease pressure a little?

Its very annoying as I had been feeling a bit better with my epap a little higher leading to lower flow limitations. but the burping at night and gas release in the morning is tough.

[Pugsy]

Back off on the pressure increases for a while until the aerophagia issues back off. Can't be trading one problem for another.
Then maybe revisit more EPAP/IPAP but at a slow rate at smaller increments and see how it goes.

[gobucks]

Back off on the pressure increases for a while until the aerophagia issues back off. Can't be trading one problem for another.
Then maybe revisit more EPAP/IPAP but at a slow rate at smaller increments and see how it goes.

thanks pugsy. will do. Think it might go away on its own?

When I get this stuff entirely sorted out I will build a monument in your honor.