UARS related poll: How many times a night do you wake ?

[dsm]

Am adding this poll to seek info on the extent we all experience sleep arousals in the night. This topic
is a flow on from the thread SWS has created on UARS, which is a very interesting topic & has some wide
ranging side issues such as daytime drowsiness despite very low AHI scores and how long xPAP worked for
some before sliding back to pre xPAP drowsiness etc:.

viewtopic/t40009/General-UARS-Discussion.html

After this poll is running I may add one that includes the below options & asks ...
"How many people have experienced an initial 'surge' of well being after starting xPAP only to feel things revert to pre cpap days"
> I am still waiting to feel an improvement
> I felt better soon after starting xPAP & still do (I have been on xPap < 3 months)
> I felt better soon after starting xPAP & still do (I have been on xPap < 6 months)
> I felt better soon after starting xPAP & still do (I have been on xPap < 12 months)
> I felt better soon after starting xPAP & still do (I have been on xPap > 12 months)
> I felt better soon after starting xPAP but it only lasted about 1 month
> I felt better soon after starting xPAP but it only lasted about 3 months
> I felt better soon after starting xPAP but it only lasted about 6 months
> I felt better soon after starting xPAP but it only lasted about 12 months

Any suggestions on refining these questions please post your thoughts

Both topics have relativity to the UARS.

Cheers

DSM

PS xPAP is a catchall for cpap, bipap vpap, asvPap etc: etc: etc:

[tillymarigold]

Interested to see the responses! I have found myself more tired in the last couple months, however I changed both machines and masks in that time so I wonder if that is the cause or if it is just stress (I have a very high-stress job that has been even more stressful lately). I hope it is not that my APAP has stopped working! I have been on APAP for about two years and I still feel way, way, way better than I did pre-APAP.

I also have a form of sleep-disordered breathing (in addition to the UARS) that my sleep doctor said he'd never seen before: when I go into REM sleep, within a few seconds, I invariably start to breathe extremely fast until I arouse myself out of REM (I can go from REM to any stage, from "awake" all the way to Stage 4). My doctor's hope was that treating only the UARS (since he has no idea how to treat the other) would at least allow me to get enough sleep to get by. (He also said I'm more sensitive to lack of sleep than anyone he's ever seen--even a few minutes less than normal will wipe me out for days.)

[dsm]

Interested to see the responses! I have found myself more tired in the last couple months, however I changed both machines and masks in that time so I wonder if that is the cause or if it is just stress (I have a very high-stress job that has been even more stressful lately). I hope it is not that my APAP has stopped working! I have been on APAP for about two years and I still feel way, way, way better than I did pre-APAP.

I also have a form of sleep-disordered breathing (in addition to the UARS) that my sleep doctor said he'd never seen before: when I go into REM sleep, within a few seconds, I invariably start to breathe extremely fast until I arouse myself out of REM (I can go from REM to any stage, from "awake" all the way to Stage 4). My doctor's hope was that treating only the UARS (since he has no idea how to treat the other) would at least allow me to get enough sleep to get by. (He also said I'm more sensitive to lack of sleep than anyone he's ever seen--even a few minutes less than normal will wipe me out for days.)

Tilly

I have found that when work stress gets very high, my respiration generally becomes problematic and xPAP therapy becomes less effective. I think in the distant past I have read books on the issue of respiration & stress being tightly linked - 'fight or flight' kicking in.

DSM

[Catnap]

I find I'm more tired than I was after first starting CPAP, but not nearly as tired as I was pre-treatment. You might want to refine the questions so that's an option, i.e., rather than "I felt great and still do" vs. "I felt great but don't anymore." Maybe something like "I felt great and still feel better, but not as good as I did at first." (Probably too wordy, but you get the gist.)

[dsm]

I find I'm more tired than I was after first starting CPAP, but not nearly as tired as I was pre-treatment. You might want to refine the questions so that's an option, i.e., rather than "I felt great and still do" vs. "I felt great but don't anymore." Maybe something like "I felt great and still feel better, but not as good as I did at first." (Probably too wordy, but you get the gist.)

Hows this ...

After this poll is running I may add one that includes the below options & asks ...
"How many people have experienced an initial 'surge' of well being after starting xPAP only to feel things revert to pre cpap days"
> am still waiting to feel an improvement
> felt better after starting xPAP & still do (been on xPap < 3 months)
> felt better after starting xPAP & still do (been on xPap < 6 months)
> felt better after starting xPAP & still do (been on xPap < 12 months)
> felt better after starting xPAP & still do (beenon xPap > 12 months)

> better now than before but not as good as when 1st started (been on xPap < 3 months)
> better now than before but not as good as when 1st started (been on xPap < 6 months)
> better now than before but not as good as when 1st started (been on xPap < 12 months)
> better now than before but not as good as when 1st started (been on xPap > 12 months)

> felt better after starting xPAP but it only lasted about 1 month
> felt better after starting xPAP but it only lasted about 3 months
> felt better after starting xPAP but it only lasted about 6 months
> felt better after starting xPAP but it only lasted about 12 months

DSM

[grumpygirl]

I agree with capnap!! That is exactly how I feel now. What can be done for UARS?? Sounds like a really good idea for a poll.

[-SWS]

Doug, I also fell in the 1-5 category for this poll.

I also have a form of sleep-disordered breathing (in addition to the UARS) that my sleep doctor said he'd never seen before: when I go into REM sleep, within a few seconds, I invariably start to breathe extremely fast until I arouse myself out of REM ...

I would sure wonder if adapt/auto servo ventilation might by able to fix that REM-based hyperventilation.

[dsm]

Thought I would add these links that may help clarify the nature of the questions I am asking ...

1st link is by Dr Stephen Y Park - UARS
http://web.mac.com/sypark/iWeb/West%20S ... /UARS.html

This one of course is the article by Gang Bao; Christian Guilleminault (Guilleminault is credited with 1st identifying UARS) - UARS 10 years on -
http://www.medscape.com/viewarticle/494651

This link is to the comments of a Dr Barry Krakow, that he posted here in Dec 2007
viewtopic.php?f=1&t=26622&st=0&sk=t&sd= ... =Dr+Krakow

Then we have this thread here started by our own SWS (which may prove just as controversial as some of the others )
viewtopic.php?f=1&t=40009&start=0

This link doesn't go too much into UARS but makes a point that untreated UARS becomes OSA
http://emedicine.medscape.com/article/295807-overview

Lots of good reading

DSM

[dsm]

Doug, I also fell in the 1-5 category for this poll.

I also have a form of sleep-disordered breathing (in addition to the UARS) that my sleep doctor said he'd never seen before: when I go into REM sleep, within a few seconds, I invariably start to breathe extremely fast until I arouse myself out of REM ...

I would sure wonder if adapt/auto servo ventilation might by able to fix that REM-based hyperventilation.

Steve, I am one of the few over the 5 mark

#2 BUT if I switch from the Vpap Adapt SV to the Bipap Auto SV, I would drop into the 1-5 category. Sleep using the Bipap Auto SV seems to be deeper & very satisfying (cosy is the word I would say best fits) but, as good as the nights are the days *appear* to be better from using the Vpap Adapt SV. Still thinking about the implications of this.

Re that hyperventilation, I keep trying to visualize the effect the Weinmann SOMNOvent CR might have when it decides to close the ipap/epap gap (apparently in equal adjustment up & down for each), until 0 gap remains. It appears to do this very quickly (not stepped) as soon as it decides the sleepers volume/rate has varied from the tracked target of volume & rate.

Having epap lower than eepap is also interesting - I haven't seen another machine (apart from a patent I read just a a couple of months back) that try that approach.

The Vpap Adapt SV, would see the hyperventilation as needing smoothing a la CHR waxing phase. I am presuming based on what I know of the machine, that EPAP remains fixed, Current Ipap (ipap + ps) will get adjusted - and assuming downward but remain at the Epap+MinPS pressure setting, then (at a guess) the machine may try to run at a slower rate. I don't believe the Vpap Adapt SV or the Bipap Auto SV, try to vary epap.

DSM

[-SWS]

#2 BUT if I switch from the Vpap Adapt SV to the Bipap Auto SV, I would drop into the 1-5 category. Sleep using the Bipap Auto SV seems to be deeper & very satisfying (cosy is the word I would say best fits) but, as good as the nights are the days *appear* to be better from using the Vpap Adapt SV.

I wonder if that trend I have highlighted in red can be sustained indefinitely. If so, I'm thinking that might be the machine I'd prefer. Do you ever have a "more awake" day after sleep deprivation in general?

Re that hyperventilation...
The Vpap Adapt SV, would see the hyperventilation as needing smoothing a la CHR waxing phase... I don't believe the Vpap Adapt SV or the Bipap Auto SV, try to vary epap.

The VPAP Adapt SV will supposedly do the same thing when it sees unaccompanied hyperventilation that it does when it sees normal breathing: drop the IPAP toward EEP.

But depending on what respiratory oscillations the Adapt SV happens to see and normalize before that REM-based hyperventilation is where I see some possibility: If there are even subtle respiratory controller oscillations that first need to be normalized, then the REM-based hyperpnea or hyperventilation just may be avoided. If there's absolutely nothing unusual going on before the hyperpnea/hyperventilation, then there's no point in even trialing an adapt/auto SV with expected gains.

[Paul56]

Once I had been on the hose for a few weeks I started sleeping the night straight through... and that happens even if I'm not having a particularly good night in terms of the AI number.

[dsm]

#2 BUT if I switch from the Vpap Adapt SV to the Bipap Auto SV, I would drop into the 1-5 category. Sleep using the Bipap Auto SV seems to be deeper & very satisfying (cosy is the word I would say best fits) but, as good as the nights are the days *appear* to be better from using the Vpap Adapt SV.

I wonder if that trend I have highlighted in red can be sustained indefinitely. If so, I'm thinking that might be the machine I'd prefer. Do you ever have a "more awake" day after sleep deprivation in general?

<snip>

Steve,

In truth I still don't really like the Vpap Adapt SV compared to the Bipap Auto SV. I would keep reverting to the Bipap Auto SV & feel I was sleeping better. But I kept coming back to the Vpap Adapt SV and have been using it pretty consistently now for the past 7 weeks. One thing I do like about the Vpap Adapt SV is it really is whisper quiet & that keeps my wife very happy. Also another thing I have observed is if I raise PS from 3.0 to 4.0 (epap is at 10 CMs), I find it more difficult to synch my breathing. But with epap = 10 + ps=3 it seems very well tuned to my breathing - but then there is that data that comes off it. Lots to work through.

To me the data I get off the Vpap Adapt SV looks very messy compared to how smooth the numbers are off the Bipap Auto SV & that is a further point of consternation (but minor) to me. I see bpm rate going up to 30 in short bursts & am sure that should not be happening. I don't see those sort of jumps in the Bipap Auto SV data. But daytimes are pretty good on the Vpap SV. In the past 4 months have lost 10 KG & am exercising daily (walking about 8-10 kms to/from work + bus, or cycling 16 kms to work & same home in a hilly area).

DSM

#2

This patent caught my attention - a ventilatory stabilization process that looks interesting. It appears to be a modified mask with a variable exit vent controlled by the machine.

The patent is here

http://patft.uspto.gov/netacgi/nph-Pars ... =6,532,959

Also one thing that does happen to me and with the Vpap Adapt SV is often when I try breathing through my nose (I feel I am breathing fine ), the machine starts ramping up the pressure steadily then if I switch to mouth breathing it reverts to normal. It is as if it has decided I am experiencing Flow Lims (or UARS) and sees the solution as raising the pressure. I don't like it doing this and have perfected a technique of breathing through both nose & mouth at the same time & that keeps me happy plus the machine. The Bipap Auto SV doesn't seem to do this to me. I suspect this may have a connection to why daytimes seem better with the Vpap Adapt SV.

DSM

[MurphysLaw]

In your future poll, could there be some sort of category where I would fall? I felt good for nearly three months after starting cpap, reverted to pre-cpap, switched to an APAP, felt good and still do.

[Catnap]

DSM, the revised questions capture exactly what I had in mind. Looking forward to seeing the poll posted, and thanks for drawing my attention to the whole subject!

[betty303]

THANKS for the links. Dr. Parks' article especially had some new info for me that gave me some new insights.

RE the poll: I find that there is a big difference in how I feel if I wake 1-2 times a night vs. 4-5 times a night. The higher the number, the worse I feel the next day.

A question: what is the difference/similarity between flow limitations and UARS? opps - I will move this question over to the general UARS discussion.