How long to get used to new mask?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Chalkie
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How long to get used to new mask?

Post by Chalkie » Sun Apr 15, 2018 2:28 am

I am now trialling the Philips Respironics Wisp mask. Two nights in.

I don't feel any better so far, but at least I am not actually worse like with the Amara View.

Looking at the leak rate stated on the machine display when I first powered up, the 35 or so that I was getting looks much better than I got with the Comfort Gel. Although I don't know whether that is the same when you are asleep.

Would you expect to feel better after one night if a new mask cuts down leaks? Or would it take longer?
Machine: Philips Respironics BiPAP C Series.
Mask: Respironics Comfort Gel Nasal Mask.

Pressure 12-18.

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Pugsy
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Re: How long to get used to new mask?

Post by Pugsy » Sun Apr 15, 2018 10:25 am

Chalkie wrote:
Sun Apr 15, 2018 2:28 am
Would you expect to feel better after one night if a new mask cuts down leaks? Or would it take longer?
Only if the leak themselves was the sole problem in why a person wasn't feeling so great could a person expect to see a difference right away.
If the therapy itself ...as in the pressure settings, etc...is not optimal...doesn't matter what the leak ends up doing..a person will still feel like crap.
If the settings are wrong...a perfectly flat leak line won't change how a person feels.

In your case...having a better managed leak line would help evaluate your therapy pressures more accurately. Meaning we could trust the data shown to be more accurate.
But I don't think your poor sleep and feeling crappy was caused by leaks alone.
Your settings aren't optimal and until you get the pressure settings optimize...leaky mask is the least of your problems.

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Goofproof
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Re: How long to get used to new mask?

Post by Goofproof » Sun Apr 15, 2018 12:54 pm

It's a Brain thing, it controls how long it takes you to accept a new thing in your environment. You can learn to control it, but the longer you let it think "I Can't", the stronger "I Can't" becomes in your brain, making everything you do in life more difficult.

New Masks usually need to be played with, adjustments need to be made at your full pressure needed. Some masks work better looser, some tighter. I lie down with the machine running at pressure, hold the mask with one hand where it feels and seals best, and adjust the strapss to hold the mask in place, the same but without my hand pressure. Trial and Error!

It takes the Software to check leaks. unless they are really bad (i use 40 LPM Total leak or less as my goal). Make adjustments after a couples days data, to base changes, Don't change more than one variable at a time.

When using a mask, over time you face structure, changes making the fit even better. (Your body fills in the gaps or moves out of the way) Jim
Use data to optimize your xPAP treatment!

"The art of medicine consists in amusing the patient while nature cures the disease." Voltaire

Chalkie
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Re: How long to get used to new mask?

Post by Chalkie » Mon Apr 16, 2018 1:23 am

I have a suspicion (or at least a hope) the leaks are better with the Wisp. I certainly feel no worse and maybe a tad better.

I am moving towards the idea of bucking the system and tweaking my settings. I will ask the clinic about titration or whatever it takes to get the settings optimised. If I don't get what I want it I will do it anyway, hopefully with some guidance from CPAPTalk.

I can always use my spare machine to experiment and they will be none the wiser.
Machine: Philips Respironics BiPAP C Series.
Mask: Respironics Comfort Gel Nasal Mask.

Pressure 12-18.

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Jas_williams
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Re: How long to get used to new mask?

Post by Jas_williams » Mon Apr 16, 2018 3:17 am

The problem I see with you using the spare machine is when they see you next and pull the info of of the machine there will be gaps in the data where you used the spare machine, not a big issue but it will be obvious to the sleep nurse. As obvious as changing the settings.

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Julie
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Re: How long to get used to new mask?

Post by Julie » Mon Apr 16, 2018 5:40 am

So TELL the nurse what happened, and stop thinking in terms of 'bucking the system' - we all change our pressures routinely.

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Pugsy
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Re: How long to get used to new mask?

Post by Pugsy » Mon Apr 16, 2018 7:03 am

Julie wrote:
Mon Apr 16, 2018 5:40 am
So TELL the nurse what happened, and stop thinking in terms of 'bucking the system' - we all change our pressures routinely.
Julie...his particular "nurse" / tech in his NHS in the UK...is Attila the Hun in disguise. He's already got in trouble for just visiting this forum. And a not very smart Atilla the Hun at that. She's not smart enough to know that she doesn't really know what she is doing in this rather special case and can't seem to realize that whatever she tried isn't working.
Jas_williams wrote:
Mon Apr 16, 2018 3:17 am
The problem I see with you using the spare machine is when they see you next and pull the info of of the machine there will be gaps in the data where you used the spare machine, not a big issue but it will be obvious to the sleep nurse. As obvious as changing the settings.
Easy...just tell them the gaps are when he said screw it and didn't use the machine. There won't be all that many of them at first anyway.
The idea is to use the spare just to see if some setting changes help or not...and not alert Atilla to the changes. :lol: :lol:

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rick blaine
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Re: How long to get used to new mask?

Post by rick blaine » Mon Apr 16, 2018 7:47 am

Hi Chalkie,

It's wrong, I think, to consider the NHS system as totally inflexible. Or to just give up if you're not happy.

If you have concerns with your current treatment - and/ or the non-doctor staff delivering it - you can ask for a second opinion*. See here:

https://www.nhs.uk/chq/Pages/910.aspx?CategoryID=68

If you think you need help in making the case, then there's the Patient Advice and Liason Service.

https://www.nhs.uk/chq/pages/1082.aspx?CategoryID=68

And alongside both of the above, you can also go back to your GP, explain your current situation, and ask if it's possible to be referred to a different sleep medicine department.

Typically, the Clinical Commisioning Group that he or she belongs to has access to at least three under the 'Patient Choice' initiative.

* The line of thinking here is: if it's ok to ask for a second opinion which implies a change of doctor, then it's just ok to ask for a change of specialist nurse or technician staff. 8)

As to changing settings yourself, I repeat what I said before. I found my sleep medicine department staff are ok with me doing it - providing I convince them that (a) I know what I'm doing, and (b) I won't come to harm.

And the clincher was and is: when they saw the results.

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Goofproof
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Re: How long to get used to new mask?

Post by Goofproof » Mon Apr 16, 2018 10:55 am

Chalkie wrote:
Mon Apr 16, 2018 1:23 am
I have a suspicion (or at least a hope) the leaks are better with the Wisp. I certainly feel no worse and maybe a tad better.

I am moving towards the idea of bucking the system and tweaking my settings. I will ask the clinic about titration or whatever it takes to get the settings optimised. If I don't get what I want it I will do it anyway, hopefully with some guidance from CPAPTalk.

I can always use my spare machine to experiment and they will be none the wiser.
Feelings are hard to compute, too many variables not taken into account. Software, reads the data and shows what is really going on. Then changes can be made to make your treatment better. Jim
Use data to optimize your xPAP treatment!

"The art of medicine consists in amusing the patient while nature cures the disease." Voltaire

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Julie
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Re: How long to get used to new mask?

Post by Julie » Mon Apr 16, 2018 10:56 am

I keep forgetting he's in that system and they do sound like ogres. Thank goodness for Rick B!

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zonker
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Re: How long to get used to new mask?

Post by zonker » Mon Apr 16, 2018 11:17 am

Julie wrote:
Mon Apr 16, 2018 10:56 am
I keep forgetting he's in that system and they do sound like ogres. Thank goodness for Rick B!
i was just about to say the same thing! i hope UK visitors here take advantage of rick's knowledge and willingness to help.

the forum is lucky to have him.
people say i'm self absorbed.
but that's enough about them.
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Pugsy
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Re: How long to get used to new mask?

Post by Pugsy » Mon Apr 16, 2018 11:45 am

Goofproof wrote:
Mon Apr 16, 2018 10:55 am
Feelings are hard to compute, too many variables not taken into account. Software, reads the data and shows what is really going on. Then changes can be made to make your treatment better. Jim

Jim...and everyone else..
This guy has a very special Respironics machine that isn't compatible with SleepyHead and he can only use Encore Pro and he hasn't been able to install Encore on his computer because Encore is a POS bitch to install sometimes.

He has to email me his SD card contents and then I have run it through my Encore and then email him the reports.

I know changes need to be made....he knows changes need to be made...even his nurse knows.....but I am not entirely comfortable with his machine and the settings...nor do I have sufficient medical history available to me to get an idea why he is even on this machine. So it's not as easy as as someone might think for this OP to just get the software and post a report and someone chimes in with what to do.
Even if he wasn't in the UK and dealing with all that stuff and afraid to try something....I don't know what to suggest to try other than a wild ass guess because I don't have enough background information to help me sort it out. I don't like doing WAGs....especially when I don't know the medical history.
And at this point the OP isn't comfortable bucking the system much less doing a WAG on his own.

In a few days I will get an email of the SD card contents again and I will then see if the leaks are better with the Wisp...and evaluate the overall therapy again at that time. Then we can see if we are better, worse or the same in terms of his AHI and how he feels as well as leak management.

In the meantime...my main recommendation is unchanged...he needs to see his doctor and not his nurse and hope the doctor has a clue how to fix things because it's clear the nurse/tech who manages patient therapy doesn't.

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Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier
Additional Comments: Mask Bleep Eclipse https://bleepsleep.com/the-eclipse/
I may have to RISE but I refuse to SHINE.

If you want to try the Eclipse mask and want a special promo code to get a little off the price...send me a private message.

Chalkie
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Re: How long to get used to new mask?

Post by Chalkie » Tue Apr 17, 2018 7:14 am

Pugsy wrote:
Mon Apr 16, 2018 11:45 am
Goofproof wrote:
Mon Apr 16, 2018 10:55 am
Feelings are hard to compute, too many variables not taken into account. Software, reads the data and shows what is really going on. Then changes can be made to make your treatment better. Jim

Jim...and everyone else..
This guy has a very special Respironics machine that isn't compatible with SleepyHead and he can only use Encore Pro and he hasn't been able to install Encore on his computer because Encore is a POS bitch to install sometimes.

He has to email me his SD card contents and then I have run it through my Encore and then email him the reports.

I know changes need to be made....he knows changes need to be made...even his nurse knows.....but I am not entirely comfortable with his machine and the settings...nor do I have sufficient medical history available to me to get an idea why he is even on this machine. So it's not as easy as as someone might think for this OP to just get the software and post a report and someone chimes in with what to do.
Even if he wasn't in the UK and dealing with all that stuff and afraid to try something....I don't know what to suggest to try other than a wild ass guess because I don't have enough background information to help me sort it out. I don't like doing WAGs....especially when I don't know the medical history.
And at this point the OP isn't comfortable bucking the system much less doing a WAG on his own.

In a few days I will get an email of the SD card contents again and I will then see if the leaks are better with the Wisp...and evaluate the overall therapy again at that time. Then we can see if we are better, worse or the same in terms of his AHI and how he feels as well as leak management.

In the meantime...my main recommendation is unchanged...he needs to see his doctor and not his nurse and hope the doctor has a clue how to fix things because it's clear the nurse/tech who manages patient therapy doesn't.
Pugsy knows my story better than anyone here. Atm I am trying to get used to the Wisp although I woke up with it having been off my face half the night. Hence feeling 0/10 today. Hopefully, the new mask will help curb the leaks, however.

I am now waiting formy next appointment at the clinic in mid-May. Last time, in late March, they whacked my settings up from 6-17 to 10-20 when I said I'd been told I needed more inhale and exhale. Apparently, the big spread between IPAP and EPAP is clinic policy (I spoke to the nurse's colleague last week who confirmed that such a spread was typical). Maybe it is also something to do with my having Ehlers-Danlos syndrome. I was at an EDS support group on Saturday and everyone seemed to suffer from rubbish, disturbed sleep. One person told me they used CPAP within minutes of our first meeting.

With EDS everything seems to be not out of the textbook. All medical treatment is extra complicated. All people with the syndrome say this.

If I need an ASV machine that is maybe one for the future.

For now I need to optimise pressures. I assume the clinic has some kind of idea as to what my ideal pressure is, or was. I am going to ask about it and press for a fresh titration/study.

As for bucking the system I have had a think about it and am willing to experiment with my backup machine. I also have worked out how to alter the settings.

I need to get used to the Wisp mask first however and wait for work stress to abate a little in case tweaking settings actually makes me worse.

EDIT: And if I don't feel the nurse/tech is doing enough I will ask to see the consultant, although that could involve waiting months.
Machine: Philips Respironics BiPAP C Series.
Mask: Respironics Comfort Gel Nasal Mask.

Pressure 12-18.