Feel Much Worse on ASV: Help?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
shortcake
Posts: 50
Joined: Wed Feb 05, 2014 4:47 pm

Re: Feel Much Worse on ASV: Help?

Post by shortcake » Wed Sep 10, 2014 10:45 am

BrianinTN wrote: • ASV settings: Pretty standard. Min EPAP=4, Min PS=2. I've tried a bunch of settings in the past, including higher EPAP and higher PS. I can tell you that the higher the pressure, the worse I feel.
Hi there,

Sorry you're feeling so crummy! I've been there (and am still there actually) - it's not a good feeling when doctors can't figure things out. Just know that you're not alone and we're here to help as much as we can.

Basics: Can you post the rest of your settings? Does ASV make you feel worse than your previous xPAPs, or are the results about the same?

Have you tried a lower PS, say, at 0? This way, you're supplied with straight CPAP pressure until the machine detects you need some assistance and will raise your PS - but only when you need it. What's your BPM setting? My prior machine (Resmed VPAP Adapt 1st gen) could only be set with PS min of 3 or higher, and no BPM options, which caused some issues with breath stacking. Being able to fine-tune those two settings on the Respironics has improved my sleep - although I still suffer from some chronic fatigue, I don't wake up at night due to being "out of sync" with the machine. Min EPAP = 4 also seems pretty low - I haven't seen your sleep study, but for some people (myself included), anything below 6 makes it hard to breathe/feel like they're getting enough air.

_________________
Mask: Wisp Nasal CPAP Mask with Headgear - Fit Pack
Additional Comments: PR System One BiPAP Auto SV Advanced (950P)

User avatar
BrianinTN
Posts: 435
Joined: Fri Mar 11, 2011 3:46 pm

Re: Feel Much Worse on ASV: Help?

Post by BrianinTN » Wed Sep 10, 2014 11:59 am

Sludge wrote:Help was offered:

ITYS

You chose not to take it (or believe it).
Sorry, but that's inaccurate. As I noted earlier in this thread, I tried getting on a very regular sleep schedule. It didn't help. Nor does it explain why I feel worse on xPAP in any way, manner, shape, or form.

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Additional Comments: minEPAP=4, minPS=2

User avatar
BrianinTN
Posts: 435
Joined: Fri Mar 11, 2011 3:46 pm

Re: Feel Much Worse on ASV: Help?

Post by BrianinTN » Wed Sep 10, 2014 12:05 pm

shortcake wrote: Hi there,

Sorry you're feeling so crummy! I've been there (and am still there actually) - it's not a good feeling when doctors can't figure things out. Just know that you're not alone and we're here to help as much as we can.

Basics: Can you post the rest of your settings? Does ASV make you feel worse than your previous xPAPs, or are the results about the same?
Thanks. The ASV makes me feel about the same as CPAP did at low pressures. There's a pretty direct correlation between the pressure and how lousy I feel. Most of the time, the ASV keeps the pressure quite low, and there are very few events.
shortcake wrote: Have you tried a lower PS, say, at 0? This way, you're supplied with straight CPAP pressure until the machine detects you need some assistance and will raise your PS - but only when you need it. What's your BPM setting?
Yup, I've tried everything from PS=0 to PS=7. It all felt about the same. BPM is set to Auto. It's a Respironics model.
shortcake wrote: My prior machine (Resmed VPAP Adapt 1st gen) could only be set with PS min of 3 or higher, and no BPM options, which caused some issues with breath stacking. Being able to fine-tune those two settings on the Respironics has improved my sleep - although I still suffer from some chronic fatigue, I don't wake up at night due to being "out of sync" with the machine. Min EPAP = 4 also seems pretty low - I haven't seen your sleep study, but for some people (myself included), anything below 6 makes it hard to breathe/feel like they're getting enough air.
Yes, I'd wondered about the BPM side. That's an interesting observation; the last time I adjusted BPM was when I was on BiPAP S/T, but the pressures were far too high then.

As for the part about feeling like it's hard to breathe, that was definitely an issue on straight CPAP when I kept the pressures low. It's fortunately not a problem on ASV. That PS seems to be just enough that I don't feel like I'm suffocating.

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Additional Comments: minEPAP=4, minPS=2

User avatar
Sludge
Posts: 953
Joined: Wed Dec 04, 2013 4:36 am

Re: Feel Much Worse on ASV: Help?

Post by Sludge » Thu Sep 11, 2014 4:48 am

BrianinTN wrote:
Sludge wrote:Help was offered:

ITYS

You chose not to take it (or believe it).
Sorry, but that's inaccurate. As I noted earlier in this thread, I tried getting on a very regular sleep schedule. It didn't help. Nor does it explain why I feel worse on xPAP in any way, manner, shape, or form.
Yes it is, no you didn't, I doubt that, it would if you really tried and yes it does, but hey, whatever.

Good luck!
You Kids Have Fun!!

User avatar
BrianinTN
Posts: 435
Joined: Fri Mar 11, 2011 3:46 pm

Re: Feel Much Worse on ASV: Help?

Post by BrianinTN » Thu Sep 11, 2014 5:42 am

Sludge wrote:
BrianinTN wrote:
Sludge wrote:Help was offered:

ITYS

You chose not to take it (or believe it).
Sorry, but that's inaccurate. As I noted earlier in this thread, I tried getting on a very regular sleep schedule. It didn't help. Nor does it explain why I feel worse on xPAP in any way, manner, shape, or form.
Yes it is, no you didn't, I doubt that, it would if you really tried and yes it does, but hey, whatever.

Good luck!
I'm pretty sure a few months of a set bedtime +/- 30 minutes and a set alarm each morning qualifies as "really tried."

I realize it must be very humbling when a situation demonstrates the limits of your expertise and knowledge, but that's not a terribly good reason to be a jerk.

To everyone else who has continued to offer helpful suggestions in this thread, I thank you deeply.

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Additional Comments: minEPAP=4, minPS=2

User avatar
Sludge
Posts: 953
Joined: Wed Dec 04, 2013 4:36 am

Re: Feel Much Worse on ASV: Help?

Post by Sludge » Thu Sep 11, 2014 6:41 am

BrianinTN wrote:I'm pretty sure a few months of a set bedtime +/- 30 minutes and a set alarm each morning
Great. Upload the Encore files to dropbox for review and analysis.
BrianinTN wrote:I realize it must be very humbling when a situation demonstrates the limits of your expertise and knowledge...
Not really. Since I am a virtual character I experience neither humility nor am I necessarily bound by knowledge limits.
You Kids Have Fun!!

User avatar
justinjustin
Posts: 119
Joined: Sun Oct 06, 2013 11:38 pm

Re: Feel Much Worse on ASV: Help?

Post by justinjustin » Fri Sep 12, 2014 3:48 pm

BrianinTN wrote:
Sludge wrote:
BrianinTN wrote:
Sludge wrote:Help was offered:

ITYS

You chose not to take it (or believe it).
Sorry, but that's inaccurate. As I noted earlier in this thread, I tried getting on a very regular sleep schedule. It didn't help. Nor does it explain why I feel worse on xPAP in any way, manner, shape, or form.
Yes it is, no you didn't, I doubt that, it would if you really tried and yes it does, but hey, whatever.

Good luck!
I'm pretty sure a few months of a set bedtime +/- 30 minutes and a set alarm each morning qualifies as "really tried."

I realize it must be very humbling when a situation demonstrates the limits of your expertise and knowledge, but that's not a terribly good reason to be a jerk.

To everyone else who has continued to offer helpful suggestions in this thread, I thank you deeply.

Sludge is quite consistently an asshole on this board to almost everyone, I wouldn't take it personally. I don't really understand why he comes on here except to put people down with arrogant or dismissive comments.

*Edit* - To be fair, I forgot that I had added Sludge to my ignore list, so I was wrong to claim "You might notice he even deleted some other posts in this thread" - And clicking on his response that was hidden, indeed again I see a sarcastic comment. Not regretting my move there. Back to ignoring the troll.

I tried to discuss it in private, but unsurprisingly he disabled direct messages, probably to limit the amount of hate mail he gets.

That said, moving on....

I'm in the same boat as you. Did all the right things, but CPAP and ASV make me feel worse the higher the pressure goes, despite a firm diagnosis of SDB.

_________________
Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Complex Sleep Apnea, mainly CSA, with UARS. RDI of 30 w/o xPAP.
Last edited by justinjustin on Mon Sep 15, 2014 9:01 pm, edited 1 time in total.

User avatar
Sludge
Posts: 953
Joined: Wed Dec 04, 2013 4:36 am

Re: Feel Much Worse on ASV: Help?

Post by Sludge » Sat Sep 13, 2014 2:59 am

justinjustin wrote:I don't really understand why he comes on here except to put people down with arrogant or dismissive comments.
Don't worry, it's going to get much worse!

I want to make sure that all those people who are tempted to spend a lot of money they don't have on going to Maimonides and/or dropping a bundle on an ASV are fully aware of what is (and isn't) going to happen.

That's the "Real Story".

If your're embarrassed by that, then TFS, Cookie.
You Kids Have Fun!!

User avatar
Sludge
Posts: 953
Joined: Wed Dec 04, 2013 4:36 am

Re: Feel Much Worse on ASV: Help?

Post by Sludge » Sat Sep 13, 2014 3:03 am

justinjustin wrote:You might notice he even deleted some other posts in this thread.
NFN, but you're wrong about that, too.
You Kids Have Fun!!

User avatar
Sludge
Posts: 953
Joined: Wed Dec 04, 2013 4:36 am

Re: Feel Much Worse on ASV: Help?

Post by Sludge » Sun Sep 14, 2014 4:04 am

justinjustin wrote:I'm in the same boat as you. Did all the right things, but CPAP and ASV make me feel worse the higher the pressure goes, despite a firm diagnosis of SDB.
Have you tried seeing an audiologist?

BTW, just bought a new truck with the money I saved by not going to Maimonides and buying an ASV.
You Kids Have Fun!!

User avatar
Sludge
Posts: 953
Joined: Wed Dec 04, 2013 4:36 am

Re: Feel Much Worse on ASV: Help?

Post by Sludge » Sun Sep 14, 2014 4:11 am

Sludge wrote:Have you tried seeing an audiologist?
That kinda looks funny, doesn't it?
You Kids Have Fun!!

User avatar
BrianinTN
Posts: 435
Joined: Fri Mar 11, 2011 3:46 pm

Re: Feel Much Worse on ASV: Help?

Post by BrianinTN » Mon Sep 15, 2014 11:46 am

Anyways...getting back on track here.....

The hygiene discussion did remind me of something I didn't mention in my original post here. My latest doc also diagnosed me with Delayed Sleep Phase Disorder (DSPD).

Her advice for me was not to fight it but rather to go to bed whenever I feel tired. (This was welcome advice, since I had previously tried lying in bed for sometimes a couple hours at a time, tossing and turning, to try to meet a "bedtime" and "good hygiene.") She also advised that I try a consistent, reasonable wake-up time that was a compromise between my natural ranges, so that amounted to around 9:30ish.

I asked about naps, since they feel necessary when on xPAP—the extra exhaustion really is that bad. She said they're fine, provided I'm not napping so much as to mess with my nighttime routine. Then again, I think she's more on the "do whatever it takes to be compliant" train, rather than the "how do we really help Brian feel better" train.

Anyway, hopefully this extra tidbit triggers an "aha!" moment for someone reading this thread, or at least maybe a "me too." I still don't understand how any of the hygiene or DSPD stuff can explain why someone would feel worse on xPAP than not, so if anyone can point to any research on that, I'd be most appreciative. Right now, I feel like I'm damned if I do and damned if I don't.

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Additional Comments: minEPAP=4, minPS=2

User avatar
49er
Posts: 5624
Joined: Mon Jan 16, 2012 8:18 am

Re: Feel Much Worse on ASV: Help?

Post by 49er » Mon Sep 15, 2014 12:13 pm

BrianinTN wrote:Anyways...getting back on track here.....

The hygiene discussion did remind me of something I didn't mention in my original post here. My latest doc also diagnosed me with Delayed Sleep Phase Disorder (DSPD).

Her advice for me was not to fight it but rather to go to bed whenever I feel tired. (This was welcome advice, since I had previously tried lying in bed for sometimes a couple hours at a time, tossing and turning, to try to meet a "bedtime" and "good hygiene.") She also advised that I try a consistent, reasonable wake-up time that was a compromise between my natural ranges, so that amounted to around 9:30ish.

I asked about naps, since they feel necessary when on xPAP—the extra exhaustion really is that bad. She said they're fine, provided I'm not napping so much as to mess with my nighttime routine. Then again, I think she's more on the "do whatever it takes to be compliant" train, rather than the "how do we really help Brian feel better" train.

Anyway, hopefully this extra tidbit triggers an "aha!" moment for someone reading this thread, or at least maybe a "me too." I still don't understand how any of the hygiene or DSPD stuff can explain why someone would feel worse on xPAP than not, so if anyone can point to any research on that, I'd be most appreciative. Right now, I feel like I'm damned if I do and damned if I don't.
Hi Brian,

Do you know off hand if you have felt any better when you go to sleep at the time you prefer vs. when you think you should go to bed? Might this be something worth tracking to see if it makes a difference?

I haven't seen any specific research on what you are asking but you might want to look on this site http://www.circadiansleepdisorders.org/ to see if you can find any helpful information.

49er

User avatar
archangle
Posts: 9294
Joined: Sun Mar 27, 2011 11:55 am

Re: Feel Much Worse on ASV: Help?

Post by archangle » Mon Sep 15, 2014 3:46 pm

justinjustin wrote:Sludge is quite consistently an asshole on this board to almost everyone, I wouldn't take it personally. I don't really understand why he comes on here except to put people down with arrogant or dismissive comments. You might notice he even deleted some other posts in this thread.
He does know his stuff, though. Especially the in depth technical stuff.

_________________
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Also SleepyHead, PRS1 Auto, Respironics Auto M series, Legacy Auto, and Legacy Plus
Please enter your equipment in your profile so we can help you.
Click here for information on the most common alternative to CPAP.
If it's midnight and a DME tells you it's dark outside, go and check for yourself.

Useful Links.

User avatar
BrianinTN
Posts: 435
Joined: Fri Mar 11, 2011 3:46 pm

Re: Feel Much Worse on ASV: Help?

Post by BrianinTN » Mon Sep 15, 2014 4:04 pm

49er wrote: Do you know off hand if you have felt any better when you go to sleep at the time you prefer vs. when you think you should go to bed? Might this be something worth tracking to see if it makes a difference?

I haven't seen any specific research on what you are asking but you might want to look on this site http://www.circadiansleepdisorders.org/ to see if you can find any helpful information.
Thanks for checking in. I really did give an honest shot to Sludge/Muffy/deltadave/mollette's suggestion of focusing on sleep hygiene once I got done with grad school. I did it when not on xPAP because I found the combination to be impossible. I was a walking zombie. Put another way, it probably jacked my Epworth up 4 points (e.g., made it likely that I would fall asleep at the wheel). Not functional and not good.

With that in context, I do feel better when I go to sleep later rather than when I "should" go to bed. That's probably why the doc gave me a DSPS diagnosis. What happened with an early bedtime was usually one of the following:
• Toss and turn for hours. Sometimes I'd try just lying there, and sometimes I'd try getting up (which seems to be suggested). I hoped that after a few weeks my body would take the hint, but it didn't seem to.
• When exhausted, I would be able to fall asleep but would wake up far too early. Sometimes it was just an hour and a half later, and sometimes it was at something like 4 in the morning.
• Also when exhausted, sometimes it was a toss-and-turn night. Last night was one of these, although in fairness I probably went to bed TOO early. I felt like I was awake most of the night.

Like I said earlier, being on the ASV changes the ballgame entirely. I'm a different person. It's like taking my natural moderate depression and magnifying it ten fold. I have no energy, and all I want to do is stay in bed and sleep, even though that sleep is not restorative. I've tried "negotiating" with myself—i.e., X hours on ASV and then if I wake up sleeping without it—but I can't say I feel any better or worse, and I know it's breeding a bad habit. (It wasn't my first choice.)

The only thing that makes me feel close to normal is use of stimulants such as Nuvigil, but those give me serious insomnia. In fact, when on my ASV, my latest bedtimes can all be attributed to Nuvigil...but those are also the only days I'm functional as a human being.

Hope this helps. Thanks again to you and everyone for the suggestions, comments, and ideas.
archangle wrote: He does know his stuff, though. Especially the in depth technical stuff.
I don't think anyone ever contested that. He was quite helpful in two of my previous threads. Where I personally took issue is the suggestion that I haven't "really tried." Doctors tend to do that sort of thing too: e.g., "Oh, your numbers look great on ASV, so you must not really be trying." There's only one person in my bedroom, (which sucks for my sex life, but that's a separate topic ), so only I really know what's up. Nothing's more frustrating than beating your head against the metaphorical wall and being told that you still aren't trying hard enough.

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Additional Comments: minEPAP=4, minPS=2