Recently privately diagnosed,...in the UK but unsure of next steps.

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chunkyfrog
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Re: Recently privately diagnosed,...in the UK but unsure of next steps.

Post by chunkyfrog » Wed Nov 25, 2020 6:13 pm

If you are waiting for an NHS appointment, be sure to ask to be considered if a spot opens up.
Sadly, I expect there will be--but no reason to feel like a ghoul--we cannot help others until we take care of ourselves.

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Re: Recently privately diagnosed,...in the UK but unsure of next steps.

Post by zonker » Wed Nov 25, 2020 7:36 pm

JLROhio wrote:
Wed Nov 25, 2020 3:26 pm

Again, I didn't want to make this political - just had to reply to the 6-month wait comment for something that could save one's life!
then don't.

on to the foe list you go.
people say i'm self absorbed.
but that's enough about them.
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Re: Recently privately diagnosed,...in the UK but unsure of next steps.

Post by chunkyfrog » Wed Nov 25, 2020 7:57 pm

zonker wrote:
Wed Nov 25, 2020 7:36 pm
JLROhio wrote:
Wed Nov 25, 2020 3:26 pm

Again, I didn't want to make this political - just had to reply to the 6-month wait comment for something that could save one's life!
then don't.

on to the foe list you go.
me, too.
there is helpful--and there is not.

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JLROhio
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Re: Recently privately diagnosed,...in the UK but unsure of next steps.

Post by JLROhio » Wed Nov 25, 2020 8:02 pm

zonker wrote:
Wed Nov 25, 2020 7:36 pm
JLROhio wrote:
Wed Nov 25, 2020 3:26 pm

Again, I didn't want to make this political - just had to reply to the 6-month wait comment for something that could save one's life!
then don't.

on to the foe list you go.
Pugsy already said what needed to be said and it could have ended there.

...but I guess you felt the need to add your two cents.
So, I'll hit you back with two more - I'll be happy to be on your "Foe List"! My comments are closed!


Trybius,
Good luck with your machine and treatment - I apologize to have derailed your thread with my comment...AND unfortunately, the need for others to jump on the bandwagon at my expense.

-
* This is the internet - what I write will probably NOT come across as it would in person; where one can read a person's face.
My posts are sometimes tongue & cheek w/some snarky sarcasm mixed in.
I leave it up to you to figure it out!
:wink:

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Re: Recently privately diagnosed,...in the UK but unsure of next steps.

Post by Pugsy » Wed Nov 25, 2020 9:13 pm

No more jumping on the band wagon please. It contributes to derailing a newbie helping thread and while we all know a little derailing is fairly common...there is a line where the derailment ends up being the primary topic and I hate to see a newbie have to wade through a load of crap to find stuff that pertains to his problem. I figure they have enough to confuse them as it is without having to sort through the derailment stuff.

Politics and religion...guaranteed to bring out heated discussions. That's okay to have them but let's not do it in a newbie helping thread please. That's why we have OT topics/threads......or private messages.
Even if all you want to say is "right on" or "I agree" or "ditto"...it keeps stoking the fire and in this situation we don't want to feed the fire here.

So elsewhere please...if you must feed this particular fire. Thank you in advance for getting back on topic. I really appreciate it.
I will quietly remove further such talk so this fire will die down and not become a raging wildfire in a newbie helping thread.
He doesn't need that right now. He needs our help and not have to wade through a field of political crap to find it.

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Re: Recently privately diagnosed,...in the UK but unsure of next steps.

Post by TheClerk » Thu Nov 26, 2020 10:41 am

Julie wrote:
Wed Nov 25, 2020 2:03 pm
To 'The Clerk' - are you the OP (Trybius) or not?
Sorry, no, I was not the same person as the OP.

I didn't want to hijack OP's thread; since Pugsy was mentionning the Exhale relief differences between the Resmed and the Philips, I thought to bring up my RT's comment. It might have been true and, maybe change the optics but, as it turns out, it seems to be false, and I am now enlightened and won't bother anyone else with that claim.

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Re: Recently privately diagnosed,...in the UK but unsure of next steps.

Post by Trybius » Mon Nov 30, 2020 6:00 am

OK, so I have just received my AirSense 10 with P10 pillow masks.
I have a couple of questions about initial setup :
  • What is a good range of settings to start with based on my results? It defaults to 4 - 20, which presumably is too large a range.
  • Do I want to enable Expiratory Pressure Relief from the beginning? If so, what level? Or do people leave it off unless they notice problems?
  • I notice there is already an SD card in the machine, does anyone know how large this is? Should I aim to replace it?
  • In the clinical settings, I can see a "Response" setting, with either "Standard" / "Soft", although I can't find any information the attached clinical guide?
Thanks for all the help thus far! I'm quite excited for my first night with the machine.

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Re: Recently privately diagnosed,...in the UK but unsure of next steps.

Post by rick blaine » Mon Nov 30, 2020 7:10 am

Hello again, Trybius,

Where to start?

1. You're right when you say 4 to 20 is wide open. These are the default settings from when the machine leaves the factory. What you don't know – but I'm telling you now – is that 4 cm is, for many people, no noticeable effect at all.

A good start, IMO, would be 8 cm minimum and 20 cm maximum. Because ...

The idea is to 'calibrate' – ie, for you to find out by trial and feedback what is best for you. In the US, where this gradually increasing the pressure to see what is needed is often done at an over-night center, it's called 'making a titration' or sometimes just 'a titration'. You are doing that at-home.

And the 'rules of thumb' for that are:

a. Make one small change at a time. Ie, start at 8 ...
b. .. then see what that's like over three or four nights. One night may not be representative ...
c. .. then go to 9, and see what that's like ...
d. If need be, go to 10 – or maybe 12. And so on.

8 cm is high enough above 4 cm to be noticeable (for most people).

Unless you have the kind of lung condition you have to see a doctor about, you can leave the top end at 20 cm, right from the beginning. The idea there is: let's see if the machine has to go there.

Cue the downloading of shareware. You will find advice about installing and using the shareware at the top of the page, in the 'tied' or 'fixed' section.

2. If there is an SD card in the machine, it's usually 2 Gb. More than enough for a year's data.

If you ever have to replace it – well, in many UK outlets now – for example, Tesco's – the 'smallest' SD card you can buy is 8 Gb. If you have to replace the SD card, use that. The machine will still accept it.

3. On the use of EPR – everybody has their own opinion. Mine is: it's a drop down for when you breathe out – and on your machine, it's 'worth' 3 cm at maximum.

But it can only drop down if the current pressure is high enough in the first place. :D

So, back to 8 cm minimum. That's high enough for a drop of 3 cm to be effective.

And as I said in point 1, make one change at a time. You can try EPR at 8 cm with no EPR; with EPR at 1; with EPR at 2; with EPR at 3 .... you get the idea?

4. I'm not au fait with ResMed and 'standard' vs 'soft'. Someone else will pop in and tell you.

5. There is a 'comfort' option for starting at a pressure that is different from your minimum, and gradually working up to it – over, say, 20 minutes. During which 20 minutes you get off to sleep.

Not everybody uses that. And many people find after a few month's use, and they become used to their minimum, that they don't bother with this gradual start.

Whether you do or don't, it seems to me that it's best setting up this feature after you have found out what your minimum is.

BFN.

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Re: Recently privately diagnosed,...in the UK but unsure of next steps.

Post by Dog Slobber » Mon Nov 30, 2020 8:56 am

Trybius wrote:
Mon Nov 30, 2020 6:00 am
OK, so I have just received my AirSense 10 with P10 pillow masks.
I have a couple of questions about initial setup :
  • What is a good range of settings to start with based on my results? It defaults to 4 - 20, which presumably is too large a range.
  • Do I want to enable Expiratory Pressure Relief from the beginning? If so, what level? Or do people leave it off unless they notice problems?
  • I notice there is already an SD card in the machine, does anyone know how large this is? Should I aim to replace it?
  • In the clinical settings, I can see a "Response" setting, with either "Standard" / "Soft", although I can't find any information the attached clinical guide?
Thanks for all the help thus far! I'm quite excited for my first night with the machine.

This is how I typically suggest people set up their AutoSet

Mode: AutoSet
Max Pressure: 14.0
Min Pressure: 6.0 - Or initially the lowest possible you can tolerate. Some people feel suffocated when the pressure is too low.
Mask: Pillows

I'm a firm believer that eventually we want to set the maximum pressure to 20, the philosophy being, let the machine go where it needs to go. But during the early days of therapy, let's cap the maximum. I think it's more important that we do everything we can to increase the success of sticking with therapy. That may mean preventing required pressure, even if it's not optimal yet.

As you become more tolerant to therapy, we can increase the maximum. And we can adjust the minimum based on pressure needs, from future posted graphs.


Response: Standard (Soft will have a gentler increase and decrease in pressure)
Ramp Time: Auto
Start Pressure: Just slightly below you minimum pressure say 5.0 - 5.8

Normally ramp is a comfort feature, and at such low pressures you don't need it for comfort. But we can take advantage of ResMed's Auto Ramp feature and use it to tell when you've fallen asleep.


EPR: On
EPR: Fulltime
EPR Level: 3

This turns on Exhale Pressure Relief, drops the pressure while exhaling by 3 centimetres. Helps breath out while new, many including me, still use it. Many beginners find turning it on is really important, breathing against pressure can be difficult at first.


Climate CTRL: Auto (if heated hose), otherwise 4
Tube Temp: Auto (if heated hose)

This sets the humidity to medium and will adjust the heated tube temperature to reduce the potential for condensation. This s a comfort feature and depending on how you feel we may want to increase or decrease humidity.


AB Filter: No

You don't have an anti-Bacterial Filter.


Essentials: Plus

This increases detail of information presented and allows all comfort settings to be adjusted without entering clinical mode.


SmartStart: On

This allows device to turn on by breathing deeply into mask and off should it detect you're not attached any more.


Then after your first night, describe how your feel, post some graphs and we can start tweaking. Your first few days are likely not to be indicative of your usage as you get accustomed to things so there may not be much to change initially.

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Re: Recently privately diagnosed,...in the UK but unsure of next steps.

Post by rick blaine » Mon Nov 30, 2020 11:13 am

Hi dogslobber.

Trybius lives in the UK. I live in the UK. There isn't any part of the UK which is more than 100 miles from the sea. And the wind, whichever direction it comes from, is some kind of wet.

The average annual humidity for London, England is 70 to 92.

So ... humidity for CPAP users in the UK is usually not a big issue. I have mine at either 1 (out of 5) or 2 (out of 5). And that provides a little warmth, rather than slake a dry throat.

So I thought "Don't mention it. Let the man get started, without getting too complicated."

And as for 'sticking with therapy', anybody in this country (the UK) who spends £210 of their own money on getting tested, £680 on buying a machine, and another £120 on a mask, is usually pretty much committed. Especially with the awareness of that drug-resistant hypertension.

A patient mentioning that shows they are both informed and thinking long term.

My sixpence worth. (That would be six pence in old British money.)

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Re: Recently privately diagnosed,...in the UK but unsure of next steps.

Post by Miss Emerita » Mon Nov 30, 2020 11:28 am

To the excellent advice you've received already, I'll add two suggestions to get your started.

Set your machine up outside your bedroom and use it for a couple of hours during the day or evening while you do something mildly diverting (e.g., read, watch TV). This will speed up the process of getting used to the novel sensations of CPAP therapy. Keep this up for at least a few days, longer if you think you need it.

You can even do this for a few days before trying to use the machine at night. When you do start night-time use, don't worry if you have difficulty using it all night right away. While ideally you'll use the machine all night right away, if you don't, you can have as a reasonable goal using it for longer and longer periods over an interval of a week or so.

The P10 mask is an excellent nasal-pillow mask: light-weight, minimalist, and quiet. Do try using each size of pillow that (I hope) came with you package. You want the size that makes a decent seal, but is large enough so the fat part sits on the *outside* of the openings to your nostrils. If you find that you're opening your mouth during the night, let us know and we can make a bunch of suggestions.
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Re: Recently privately diagnosed,...in the UK but unsure of next steps.

Post by violentvix » Mon Nov 30, 2020 9:38 pm

Dog Slobber wrote:
Mon Nov 30, 2020 8:56 am
Trybius wrote:
Mon Nov 30, 2020 6:00 am
OK, so I have just received my AirSense 10 with P10 pillow masks.
I have a couple of questions about initial setup :
  • What is a good range of settings to start with based on my results? It defaults to 4 - 20, which presumably is too large a range.
  • Do I want to enable Expiratory Pressure Relief from the beginning? If so, what level? Or do people leave it off unless they notice problems?
  • I notice there is already an SD card in the machine, does anyone know how large this is? Should I aim to replace it?
  • In the clinical settings, I can see a "Response" setting, with either "Standard" / "Soft", although I can't find any information the attached clinical guide?
Thanks for all the help thus far! I'm quite excited for my first night with the machine.

This is how I typically suggest people set up their AutoSet

Mode: AutoSet
Max Pressure: 14.0
Min Pressure: 6.0 - Or initially the lowest possible you can tolerate. Some people feel suffocated when the pressure is too low.
Mask: Pillows

I'm a firm believer that eventually we want to set the maximum pressure to 20, the philosophy being, let the machine go where it needs to go. But during the early days of therapy, let's cap the maximum. I think it's more important that we do everything we can to increase the success of sticking with therapy. That may mean preventing required pressure, even if it's not optimal yet.

As you become more tolerant to therapy, we can increase the maximum. And we can adjust the minimum based on pressure needs, from future posted graphs.


Response: Standard (Soft will have a gentler increase and decrease in pressure)
Ramp Time: Auto
Start Pressure: Just slightly below you minimum pressure say 5.0 - 5.8

Normally ramp is a comfort feature, and at such low pressures you don't need it for comfort. But we can take advantage of ResMed's Auto Ramp feature and use it to tell when you've fallen asleep.


EPR: On
EPR: Fulltime
EPR Level: 3

This turns on Exhale Pressure Relief, drops the pressure while exhaling by 3 centimetres. Helps breath out while new, many including me, still use it. Many beginners find turning it on is really important, breathing against pressure can be difficult at first.


Climate CTRL: Auto (if heated hose), otherwise 4
Tube Temp: Auto (if heated hose)

This sets the humidity to medium and will adjust the heated tube temperature to reduce the potential for condensation. This s a comfort feature and depending on how you feel we may want to increase or decrease humidity.


AB Filter: No

You don't have an anti-Bacterial Filter.


Essentials: Plus

This increases detail of information presented and allows all comfort settings to be adjusted without entering clinical mode.


SmartStart: On

This allows device to turn on by breathing deeply into mask and off should it detect you're not attached any more.


Then after your first night, describe how your feel, post some graphs and we can start tweaking. Your first few days are likely not to be indicative of your usage as you get accustomed to things so there may not be much to change initially.

Is it ok to buy an anti bacterial filter for the resmed auto set 10?

Trybius
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Location: London, UK

Re: Recently privately diagnosed,...in the UK but unsure of next steps.

Post by Trybius » Tue Dec 01, 2020 2:49 am

Thank you everyone for all the awesome setup tips.
In the end I went with a minimum of 5 as I was initially feeling a little overwhelmed at 6 when I lay down to sleep. I think now I'm used to it a little more I could move up the minimum.
I spent around 2 hours pre-bed wearing the mask, and got very used to it. Surprisingly as soon as I went to bed and lay down, it felt very different, and it took another 20-30 minutes to settle.
Initially it felt like I was minorly fighting the machine, but it's quite possible I was too focused on my breathing, which in turn caused me to breath in not quite a natural fashion.

Once my breathing was normal, the machine really did seem to work well with it, and that pattern persisted for the entire night.
I woke a few times, but more I think from rolling and hitting myself in the face with the tube.

Overall I feel pretty good this morning. Got around 7 hours of sleep, and I feel rather rested this morning, although it could just be placebo.
The data seems to show a pretty low AHI (0.59) so either the machine is working, or now I'm paranoid that the report was completely wrong and I didn't need to get a machine!

I've attached my graph, if anyone has any suggestions on modifying settings please let me know. Given the quality of sleep and ease of use, I think the settings must be in the ballpark already.

One question - I filled my water reservoir in the humidifier to the max level, but this morning it was completely empty. Is that normal? Or do I have it set too high? I don't have any symptoms of a dry throat / nose, so presumably it is doing it's job.

screenshot-20201201-084103.png
screenshot-20201201-084103.png (129.21 KiB) Viewed 1389 times

rick blaine
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Re: Recently privately diagnosed,...in the UK but unsure of next steps.

Post by rick blaine » Tue Dec 01, 2020 5:38 am

Hi Trybius,

You wrote:

"Now I'm paranoid that the report was completely wrong and I didn't need to get a machine!"

It's unlikely that the report is far wrong.

So ... it is unusual. :D But you may be one of those people who doesn't need much pressure to get the job done.

Now, repeat for a few days – and see if you really are rested. And, for example, your hypertensive reaction to exercise begins to change.

The placebo effect is a possibility. But AFAIK, it doesn't pop up much in this 'game'. If it did, forums like this wouldn't see so many threads which start with "I've been doing this for three/ six/ nine months now – when is the awfulness going to end?"

Trybius
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Location: London, UK

Re: Recently privately diagnosed,...in the UK but unsure of next steps.

Post by Trybius » Tue Dec 01, 2020 7:13 am

>It's unlikely that the report is far wrong.

Yeah, it would be unusual! And it's worth noting, I purchased a oximeter SP02 monitor that you wear during the night, and have worn it for about a month now, and that frequently detects dips to 80% (matching the report), and gives me AHI scores of between 10-12.
I didn't wear it last night, but I'm going to try again tonight along with the APAP, and see if my scores on it have markedly gone up.