Newbie Greetings, findings and sadly, questions

[rick blaine]

Hi SolisQuaesitor71,

It was I who gave you the wrong pointer to info about the ResMed Quattro. I was working from my clearly fallible memory, rather than from the files I had archived from my previous MacBook.

So, my error. And my apologies.

The web page I had in mind was indeed the one headlined 'MASK ARRAYED' - as here:

https://maskarrayed.wordpress.com/tamin ... e-quattro/

While I was checking with my archived files, I found this:

"by b360155 on Tue Nov 27, 2012 8:31 am

"There are a bunch of videos on YouTube you might want to watch if you haven't seen them before. Just go to YouTube and search on 'Quattro FX fitting'.

"The Quattro FX is put on and worn a little different than other ffm's. It uses what Resmed calls the 'swing and seal' technique where you place the top portion of the mask mid-bridge on your nose first and then swing the bottom part down into place.

"The straps should not be overly tight as the mask is supposed to 'float' on your face. If you are getting leaks at the top, you may be putting the mask too high on the bridge of your nose.

"Like I say, it's supposed to be applied 'mid-bridge' near the bony part of your nose. Then when you turn your machine on, the silicone cushion will inflate all around the mask and form a seal.

"At the top of the mask the silicone will actually kind of bubble out around the bridge of your nose in forming a seal at that point.

Something that I do that seems to help too is that I will place a finger on the front of the mask and apply slight pressure on the mask as I turn the machine on. You will feel the mask move slightly away from your face as the cushion inflates and once it is inflated, remove your finger from the mask and hopefully you won't feel any leaks at all.

"Another thing that may help is cleaning the mask each morning to remove facial oils and also washing your face each evening just before masking up.

"Good luck."

And I also found this:

https://www.resmed.com/us/dam/documents ... er_eng.pdf

And this:

"by lovescuba on Thu Feb 16, 2012 7:23 pm

"I just had my 30-day follow-up with my sleep doc, since starting CPAP.

"All my numbers were were great, as I knew, with thanks to Sleepyhead.

"Even with a great (low) leak rate, my doc wanted to check the fit of my mask. She works primarily with the Quattro FX since it came out. She just has a passion with this FFM.

"She noted my adjustment was 'close - but no cigar' ... and what she did [next] amazed me both with the comfort and the seal.

"1. The top straps were too tight. She loosened them, and lowered the ride on my nose. [It] should sit lower than normal eye-glass nose pads.

"If top straps are too tight, it pulls upward on the mask. Let the outer seal work .... Too tight equals eye leaks AND leaks at the chin.

"2. Make sure head-gear rides low on the back of the head. [The] label should be at the low skull, upper neck.

"3. Lower straps should be tighter than upper straps - to prevent ride up.

"4. Without pressure, [the] inner support seals should be barely touching. Under pressure, they should not be touching when laying flat on your back.

"She made these adjustments [and] it felt awesome. I rolled around [on her couch] and no leaks. I could not believe it!

"I came home and went for a nap, had to test it out. One hour nap, zero leak, and a AHI of .06 ....

"Now I love this mask more than before. We will see how tonight goes .... Really looking forward to bedtime."

Once again, my apologies for the error.

[SolisQuaesitor71]

It's ok Rick no problem and thanks for the guidance.

Pugsy, thanks for the link to the setup for my machine. I'm guessing that this link is to an american site? I only guess this as they state that once prescribed you 'own' the machine? I'm not sure that being in the UK i actually own the machine therefore aren't free to do as i wish with it. Still, there is a wealth of information which i'll go work through... I'm still rather wary of going into the settings and fiddling with things.. could someone UK based clarify where i stand here please? My healthcare provider initially didn't want to see me for 6 months again but i was rather surprised at this and insisted that 2 months would be better for my piece of mind.

I 'made' myself a cpap mask liner today (yay!) from an old cotton towel.. apart from the fact that it's very hard to put on my face along with the mask it seems to work surprisingly well, although i'll know better tomorrow if i'm online at a crazy early time.. i'll keep you posted lol..

I am noticing that some mornings i wake barely able to feel my legs.. i'm taking that as a positive thing that i'm more relaxed.

[rick blaine]

Hello again,

The machine stays the property of the hospital, and the nhs, and is issued to you on a long-term-loan basis. One reason why they do that is that, if a patient starts CPAP treatment, and then after three months decides it's not for them, then the hospital gets the machine back - to clean up, and then issue to another patient.

As to 'will changing any of the settings harm the machine?' That's extremely unlikely. What will harm a machine is dropping it on to a hard surface from a height of more than 3 feet, spilling coffee on it, and running it without the filter in. But changing the settings - the controls won't let you take the machine outside the parameters that the engineers at Philips Respironics have calculated.

[SolisQuaesitor71]

Hello again,
.

As to 'will changing any of the settings harm the machine?' That's extremely unlikely. What will harm a machine is dropping it on to a hard surface from more than 3 feet, spilling coffee on it, and running it without the filter in. But changing the settings - the controls won't let you take the machine outside the parameters that the engineers at Philips Respironics have calculated.

Hi Rick, I understand that the machine works within parameters. What I was wondering is whether I'm breaking rules or regulations by changing any of the settings which the hospital usually modifies. I dont want to get into trouble by the nhs

[rick blaine]

@ SolisQuaesitor71,

I don't know what the staff at your sleep medicine department have as a policy. So I can't speak for them.

Where I am, my GP knows that I adjust my machine. She doesn't object because she knows I have done it sensibly** and after doing some research. Indeed, as she put it, "You [now] know more about sleep apneas and its treatment than I do."

The chief physiologist at my local sleep medicine department (who I see* at my annual follow-up) is the same. She looks at the numbers, sees what I've done, sees that I've gone about it in a sensible way**, and is fine with that.

What nhs people are mostly concerned about is their duty of care. They have a duty of care that they do not harm you, or let harm come to you ('primum non nocere'). And they have a duty of care that you do not harm yourself.

Provided those two are satisfied ...

* I don't always see her, but she is someone who makes it a point to see everyone on her service at least once.

** Make small changes, Make them one at a time. Wait two or three days to evaluate before making another (small) change.

[SolisQuaesitor71]

Cheers Rick, so it's a great area. I've no wish to start randomly changing numbers in the machine as i don't even understand the Sleepyhead graphs and rely on Pugsy (cheers Pug) to interpret them for me. The consensus is that my min pressure needs to be higher and that was adjusted today. I did change it in the machine though to a minimum of 15cm to try and fit the mask correctly before reverting it back again. Hopefully i'm not in trouble for doing that.

What i don't understand (and was the point of my initial post which you wrote a detailed response to) is why we aren't given more control for our treatment... for example, the clinic would've (without me requesting) had my min pressure at 6cm for the next 6 months! From what i understand from Pugsy that simply isn't correct and therefore i'd be struggling for that period of time, and basically the wrong treatment. Something that i found interesting that i only noticed today which you (or Pugsy) may be able to shed some light on, is that the hospital sleep specialist hasn't once taken out the SD card and looked at the data on it.. they just looked at and wrote down some information from the machine itself.. surely Sleepyhead is a more detailed representation of events, or maybe Pugsy could interpret the data as well just with the machine's screen as he would with sleepyhead.. i doubt that. Interesting though albeit confusing

[SolisQuaesitor71]

I went to sleep quite quickly but i do drink a good deal of alcohol before going to bed daily.

Could be a good bit of your problem. Alcohol can exacerbate apnea and lead to late night insomnia. See here for an overview: https://www.webmd.com/sleep-disorders/n ... ol-sleep#1

Hi Jay, thanks for your input. I understand your comment however i've already tried stopping drinking for 2 months with difference in my apnea (as verified by the wife). In fact, she said i got worse

[TedVPAP]

Cheers Rick, so it's a great area. I've no wish to start randomly changing numbers in the machine as i don't even understand the Sleepyhead graphs and rely on Pugsy (cheers Pug) to interpret them for me. The consensus is that my min pressure needs to be higher and that was adjusted today. I did change it in the machine though to a minimum of 15cm to try and fit the mask correctly before reverting it back again. Hopefully i'm not in trouble for doing that.

What i don't understand (and was the point of my initial post which you wrote a detailed response to) is why we aren't given more control for our treatment... for example, the clinic would've (without me requesting) had my min pressure at 6cm for the next 6 months! From what i understand from Pugsy that simply isn't correct and therefore i'd be struggling for that period of time, and basically the wrong treatment. Something that i found interesting that i only noticed today which you (or Pugsy) may be able to shed some light on, is that the hospital sleep specialist hasn't once taken out the SD card and looked at the data on it.. they just looked at and wrote down some information from the machine itself.. surely Sleepyhead is a more detailed representation of events, or maybe Pugsy could interpret the data as well just with the machine's screen as he would with sleepyhead.. i doubt that. Interesting though albeit confusing

In my own experience, and the experience of two friends: the doctors and DME have been worthless, and the sleep studies have been near worthless.

[SolisQuaesitor71]

In my own experience, and the experience of two friends: the doctors and DME have been worthless, and the sleep studies have been near worthless.

Well that's not promising. I'm unsure what a DME is but my sleep specialists, nice as they are I do feel that there's no real control over the treatment of apnea. The machine is great and although it does initially help it isn't a simple cure like an injection.

Even now, thanks to my own research and with talking to people on here I could offer so much more advice and support to any fellow sufferers to help their progress move more quickly

[Bertha deBlues]

In my own experience, and the experience of two friends: the doctors and DME have been worthless, and the sleep studies have been near worthless.

Well that's not promising. I'm unsure what a DME is but my sleep specialists, nice as they are I do feel that there's no real control over the treatment of apnea. The machine is great and although it does initially help it isn't a simple cure like an injection.

Even now, thanks to my own research and with talking to people on here I could offer so much more advice and support to any fellow sufferers to help their progress move more quickly

DME = Durable Medical Equipment supplier. The ones who supply your machine and supplies, and might have respiratory therapists on staff.

[TedVPAP]

In my own experience, and the experience of two friends: the doctors and DME have been worthless, and the sleep studies have been near worthless.

Well that's not promising. I'm unsure what a DME is but my sleep specialists, nice as they are I do feel that there's no real control over the treatment of apnea. The machine is great and although it does initially help it isn't a simple cure like an injection.

Even now, thanks to my own research and with talking to people on here I could offer so much more advice and support to any fellow sufferers to help their progress move more quickly

DME is Durable Medical Equipment provider. Learning to manage your own treatment is extremely important for many (most) pap'rs ,

[Jay Aitchsee]

I went to sleep quite quickly but i do drink a good deal of alcohol before going to bed daily.

Could be a good bit of your problem. Alcohol can exacerbate apnea and lead to late night insomnia. See here for an overview: https://www.webmd.com/sleep-disorders/n ... ol-sleep#1

Hi Jay, thanks for your input. I understand your comment however i've already tried stopping drinking for 2 months ...

Good for you!

[SolisQuaesitor71]

Well i'm very surprised. Despite going to bed rather late i decided to try out my DIY Mask Liner to see if it'd make a different, and it did! I do think it may have been a combination of both this as well as changing the machine to temporarily run at my maximum pressure so that i could fit the mask but look at the chart! Pugsy and anybody else, your input would be greatly appreciated. The AHI has dropped by almost half and i had a very good sleep with no noticeable leaks throughout the night. I awoke feeling good, albeit still with a sore nose due to the pressure of the mask.

[Pugsy]

That is indeed a significant improvement.

Let's fix the leak statistic so it isn't telling you that you are leaking worse than you are (which isn't horrible BTW).
You aren't in large leak 15% of the time.
Go to SleepyHead Preferences/CPAP tab and on the upper right side change the 24 L/min (which is the ResMed leak threshold and won't work with Respironics) to something more suitable for your brand of machine. Here's the problem though....Respironics doesn't have a fixed line in the sand or threshold because large leak territory varies by pressures used so it instead roams around depending on your mask and the pressure but something around 60 L/min would be a better threshold number for you. Either change the 24 to 60 or maybe 65 or just turn it off and use the machine large leak flags for leak evaluation.

[TedVPAP]

Well i'm very surprised. Despite going to bed rather late i decided to try out my DIY Mask Liner to see if it'd make a different, and it did! I do think it may have been a combination of both this as well as changing the machine to temporarily run at my maximum pressure so that i could fit the mask but look at the chart! Pugsy and anybody else, your input would be greatly appreciated. The AHI has dropped by almost half and i had a very good sleep with no noticeable leaks throughout the night. I awoke feeling good, albeit still with a sore nose due to the pressure of the mask.

The increase of minimum IPAP from 6 to 8 is helping.
10 will be better.