So...can't wait till Friday

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palerider
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Re: So...can't wait till Friday

Post by palerider » Wed Apr 18, 2018 7:52 pm

Pugsy wrote:
Wed Apr 18, 2018 11:17 am
palerider wrote:
Wed Apr 18, 2018 10:56 am
Have you ever tried *less* pressure support?
I wondered about this myself but I haven't seen any reports from before the bipap...as in the probable first DreamStation if there was a first non bilevel DreamStation after the M series.

I was going to suggest reducing PS after tonight's auto bilevel trial while the ASV is in transit.
Kinda wanted to get an idea where the bilevel wanted to go to first because if it wants to spend all night up at 18...going without much PS might not be much fun.
I was thinking maybe let PS run between 1 and 2 just to see if there was much difference...or off maybe.
Since it's got variable ps... yeah, maybe a min 2 max 4... see what it wants to do... and see if there's a correlation between the ps and the severity of the centrals.

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Barb (Seattle)
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Re: So...can't wait till Friday

Post by Barb (Seattle) » Thu Apr 19, 2018 6:18 am

Pugsy wrote:
Wed Apr 18, 2018 12:49 pm
Barb (Seattle) wrote:
Wed Apr 18, 2018 12:36 pm
I was on bipap...I'm not sure about the pressure support....I think it has to be on Auto for that?
Nope...you don't have to be on auto to be using Pressure Support.
Pressure Support is nothing more than the difference between inhale and exhale.

Example

16 EPAP and 20 IPAP...that's a difference of 4 cm...so PS of 4
14 EPAP and 19 IPAP...that's a difference of 5 cm...so PS of 5

now in auto mode with your machine the PS can either be fixed or vary some but it doesn't vary fast enough to do what the ASV can do when it varies and that's why it can't help your breathing that much.

The reason PR asked if you ever tried no PS...is because in some people it's the PS that triggers centrals. It's not hugely common though but I have seen it happen.
Had a lady that I was helping that had a truckload of centrals with PS of 4 and essentially none with PS of 3.

It's something that I was aware of and was going to discuss with you when we get a chance to chat.
Problem is when people need the PS for comfort and if that PS causes the centrals...damned if you do and damned if you don't.
But like I said...it's not all that common but something I was planning on ruling in or out in your situation just in case.

I first wanted auto bilevel mode at the settings I suggested...then depending on those results and your comfort and what pressures you appeared to be needing for the obstructive stuff I was going to suggest playing with the PS a bit.
ahhh ok. that makes sense :) well.....I pm'd you the results. horrible. 38 ahi sigh
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Barb (Seattle)
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Re: So...can't wait till Friday

Post by Barb (Seattle) » Thu Apr 19, 2018 6:22 am

chunkyfrog wrote:
Wed Apr 18, 2018 12:50 pm
If it is your heart, you do NOT want to wait.
Call the office, and at least talk to a nurse or PA.
I might look for a cardiologist...not sure my Nurse Practitioner Dr would know anything, and she'd probably refer me anyway.

so much going on right now.....just what I need. Another health problem... :roll: to add to my back, shoulders, and knee.
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Re: So...can't wait till Friday

Post by Barb (Seattle) » Thu Apr 19, 2018 6:24 am

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Re: So...can't wait till Friday

Post by Barb (Seattle) » Thu Apr 19, 2018 7:03 am

I just know that right now I am very frustrated and depressed.

3 sleep studies since August. and, all they can tell me from the last one (april 7th) is the best pressure during the
study was 23/19. sorry, but that's too high and I can't sleep with it that high.

I guess this might be one of the things in life that has no solution.

I have a feeling that even ASV won't work...that's how depressed I am right now.

I will be gone today, my husband's having surgery. Maybve I can get a nap today in the chair at the hospital.



:( :( :( :(
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Jas_williams
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Re: So...can't wait till Friday

Post by Jas_williams » Thu Apr 19, 2018 7:12 am

Barb (Seattle) wrote:
Thu Apr 19, 2018 7:03 am
I just know that right now I am very frustrated and depressed.

3 sleep studies since August. and, all they can tell me from the last one (april 7th) is the best pressure during the
study was 23/19. sorry, but that's too high and I can't sleep with it that high.

I guess this might be one of the things in life that has no solution.

I have a feeling that even ASV won't work...that's how depressed I am right now.

I will be gone today, my husband's having surgery. Maybve I can get a nap today in the chair at the hospital.



:( :( :( :(
Hang in there Pugsy is going to come up with the goods we can help you feel better. Poor sleep can sure as hell make you feel depressed and frustrated, with the right machine and treatment it will be a revelation we do feel for you

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Barb (Seattle)
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Re: So...can't wait till Friday

Post by Barb (Seattle) » Thu Apr 19, 2018 7:17 am

thank you..all I do is cry between my back problems and this....


I need to stay positive but it's hard.....

sorry for whining but I do feel better typing it all out...

anyone else find it strange that I can't find help through the medical establishment? that I have to go to a message board
to find a solution for my apnea problems? Thank God for Pugsy!
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Pugsy
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Re: So...can't wait till Friday

Post by Pugsy » Thu Apr 19, 2018 7:44 am

The next experiment will be to reduce PS and see if PS is triggering the centrals.
Will send you a PM with the changes for tonight's experiment.
Going to try limiting PS to min of 1 and max of 2....and then maybe turning it off.
Or heck, if you are comfortable...turn it off first....by setting PS min to 0 and PS max to 0
The machine isn't wanting to go very high to deal with the obstructive stuff which is very minimal it looks like.
When you have time later after dealing with hubby today...we can chat about some things.

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Re: So...can't wait till Friday

Post by gwc2795 » Thu Apr 19, 2018 7:57 am

I do not find it strange. I have been using this forum and the apnea board forum to discover how ineffective my treatment has been. When I review sleepyhead now for the 7 years on my first machine it is amazing how well I felt and how poorly I was being treated. But now age ( or something) is catching up and I am no longer able to take the apneas. I have changed the settings on my aircurve 10S and it is giving me better results but some nights I have 44 CA's. I am trying to learn enough to make sure I receive proper treatment. The doctors can not be concerned about my problems, they only see me about once a year and the DME only wants to get the money from the insurance. My DME's RT said she wished she knew how to read the SH charts. You have to be responsible for your own health, be proactive not reactive. I understand the depression but it will not help you, it will prevent you from getting the problem resolved. Trust the advice and assurances you are receiving they are trying to help and they will help in the end, you will feel much better.

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Re: So...can't wait till Friday

Post by palerider » Thu Apr 19, 2018 11:47 am

Barb (Seattle) wrote:
Thu Apr 19, 2018 7:03 am
3 sleep studies since August. and, all they can tell me from the last one (april 7th) is the best pressure during the
study was 23/19.
Titration studies may be 'the gold standard' in many peoples eyes... but think about it, you're wired up, in a weird place... in a strange bed... there's no way you're going to sleep the same way you did at home... and, at best, they come up with a *part* of the night that they may say 'oh, you slept good at this pressure... a whole 43 minutes!...

Anybody who's ever looked at a few charts knows that sleep changes from night to night, and hour to hour...

Sure, sometimes titration studies get a number(s) that work... but we're all here as evidence that all too often, they don't.

It's not really much surprise that they often fail, it's more of a surprise that they ever work.

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Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.

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Barb (Seattle)
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Re: So...can't wait till Friday

Post by Barb (Seattle) » Thu Apr 19, 2018 12:17 pm

Thank you for the perspective...I definitely didn't sleep very well that night..........

palerider wrote:
Thu Apr 19, 2018 11:47 am
Barb (Seattle) wrote:
Thu Apr 19, 2018 7:03 am
3 sleep studies since August. and, all they can tell me from the last one (april 7th) is the best pressure during the
study was 23/19.
Titration studies may be 'the gold standard' in many peoples eyes... but think about it, you're wired up, in a weird place... in a strange bed... there's no way you're going to sleep the same way you did at home... and, at best, they come up with a *part* of the night that they may say 'oh, you slept good at this pressure... a whole 43 minutes!...

Anybody who's ever looked at a few charts knows that sleep changes from night to night, and hour to hour...

Sure, sometimes titration studies get a number(s) that work... but we're all here as evidence that all too often, they don't.

It's not really much surprise that they often fail, it's more of a surprise that they ever work.
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Barb (Seattle)
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Re: So...can't wait till Friday

Post by Barb (Seattle) » Thu Apr 19, 2018 12:20 pm

I am very grateful that I've found help here
8) :D :D
gwc2795 wrote:
Thu Apr 19, 2018 7:57 am
I do not find it strange. I have been using this forum and the apnea board forum to discover how ineffective my treatment has been. When I review sleepyhead now for the 7 years on my first machine it is amazing how well I felt and how poorly I was being treated. But now age ( or something) is catching up and I am no longer able to take the apneas. I have changed the settings on my aircurve 10S and it is giving me better results but some nights I have 44 CA's. I am trying to learn enough to make sure I receive proper treatment. The doctors can not be concerned about my problems, they only see me about once a year and the DME only wants to get the money from the insurance. My DME's RT said she wished she knew how to read the SH charts. You have to be responsible for your own health, be proactive not reactive. I understand the depression but it will not help you, it will prevent you from getting the problem resolved. Trust the advice and assurances you are receiving they are trying to help and they will help in the end, you will feel much better.
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21 years on CPAP

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Rubyslipperss
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Re: So...can't wait till Friday

Post by Rubyslipperss » Thu Apr 19, 2018 12:36 pm

Barb (Seattle) wrote:
Thu Apr 19, 2018 6:22 am
chunkyfrog wrote:
Wed Apr 18, 2018 12:50 pm
If it is your heart, you do NOT want to wait.
Call the office, and at least talk to a nurse or PA.
I might look for a cardiologist...not sure my Nurse Practitioner Dr would know anything, and she'd probably refer me anyway.

so much going on right now.....just what I need. Another health problem... :roll: to add to my back, shoulders, and knee.
Every time I go to the Doctor she finds a new problem! ROFL

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Barb (Seattle)
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Re: So...can't wait till Friday

Post by Barb (Seattle) » Fri Apr 20, 2018 7:36 am

Rubyslipperss wrote:
Thu Apr 19, 2018 12:36 pm
Barb (Seattle) wrote:
Thu Apr 19, 2018 6:22 am
chunkyfrog wrote:
Wed Apr 18, 2018 12:50 pm
If it is your heart, you do NOT want to wait.
Call the office, and at least talk to a nurse or PA.
I might look for a cardiologist...not sure my Nurse Practitioner Dr would know anything, and she'd probably refer me anyway.

so much going on right now.....just what I need. Another health problem... :roll: to add to my back, shoulders, and knee.
Every time I go to the Doctor she finds a new problem! ROFL

yup. think I"m fallin apart :? :lol:

weill, it went much better last night.....hopefully, we're onto something here 8) 8) 8) 8)


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Pugsy
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Re: So...can't wait till Friday

Post by Pugsy » Fri Apr 20, 2018 8:20 am

We might just be on to something.
For tonight...
PS minimum and max to 0 (both of them) and also increase the minimum EPAP to 14 if you can handle it comfortably.

If this works out...you may be able to do well with this current machine and not need the ASV.

I know another woman who needed PS for comfort but it caused centrals at 4 but none at 3..go figure.
So if 0/0 isn't comfortable...maybe look at 1/1 and see how things go.

It's not common for PS to trigger centrals but it can happen and it's always worth checking out to make sure.
I didn't think it was the case for you but looks like I was wrong and nothing would make me happier because that means less headaches for you in trying to get the ASV (plus less costs because of co pays) if we can get you effective therapy with this current machine.

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