New to cpap

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Ian000
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New to cpap

Post by Ian000 » Sun Oct 04, 2015 1:07 pm

i I am new to using cpap. My machine is on trial for me to see if it helps me. So far it is helping so much apart from sores on my tongue and cheeks
I am in the UK and it has taken over 15 months to get to this stage. I had been told I had sleep apnoea and then that they didn't think I did.so they did a sleep study and the consultant told me that I did have sleep apnoea but that it was mainly central and hypoxia or very shallow breathing and that my oxomitry was close to normal. I was having 20 episodes an hour. She then basically said " so we can try a cpap machine or just do nothing and she doubted if a cpap machine would help me" I felt that my symptoms were dismissed as not that serious and almost went along with what she said, but I thought well I may as well try it. The cpap machine has made a huge difference so far although I am still adjusting to it.
I don't want to sound paranoid but I can't help thinking that the consultants statement may have been a reflection of financial cuts and that only people who are desperate enough are being prescribed cpap. I would be interested to hear others experience. I had to go back to hospital after 2 nights to have the mask fitted better and the pressure altered and on them first 2 nights when machine wasn't working properly, my apnoea reduced from 20 to 10 an hour and now I am certain they are much less than that
The only other issue I've had is that twice I have taken mask off in my sleep without being aware
Sorry to ramble on a bit, but its good to find a place to share experience with people who have been there

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Pugsy
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Re: New to cpap

Post by Pugsy » Sun Oct 04, 2015 1:27 pm

Welcome to the forum.
Does your health system not deal with central sleep apnea which is easily treated by a special cpap machine.
Normally regular cpap won't/can't deal with central sleep apnea and here in the US people are given a special cpap machine called ASV (Adapto Servo Ventilation) that will kick in and do the breathing for you when you aren't breathing on your own.
Those types of machines are quite pricey though and maybe budget cuts prohibits them from dispensing those machines.
Do you have any known cardiac output issues like congestive heart failure?

What brand and model machine are you now using? Does it have any data available so you can see what is happening instead of guessing?
If you can tell us the exact brand and model name/or model number we can tell you if it is a full data machine or not and hopefully then point you to some software where you don't have to guess how many centrals you are having each night.

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Ian000
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Re: New to cpap

Post by Ian000 » Mon Oct 05, 2015 12:42 am

Hi
My machine is a Resmed S9 escape. It has an SD card that the hospital use to download data but I don't have access to that

I don't have any heart failure is issues, I am actually very fit, run marathons etc

When I was at the hospital the consultant didn't seem sure of my results. There was some obstructive apnoea but she seemed to think most were central. Mind you the machine is definitely helping and my daytime symptoms have definitely reduced. I go back to hospital at the end of the month and the data will then be analysed, so I should know more then. I have emailed the consultant to ask questions but have had no response. I am a big supporter of our NHS but it does seem that finance is playing a big part in what treatment is prescribed.

About 17 years ago I had laser surgery to my soft palette and evola and had my septum moved, at the time I didn't ask much about it I just thought it was for snoring.

Also I managed to sleep more with my mouth closed last night and didn't bite my cheeks or tongue thanks to reading threads on this site. So thanks for that

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zoocrewphoto
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Re: New to cpap

Post by zoocrewphoto » Mon Oct 05, 2015 1:09 am

Ian000 wrote:Hi
My machine is a Resmed S9 escape. It has an SD card that the hospital use to download data but I don't have access to that

I don't have any heart failure is issues, I am actually very fit, run marathons etc

When I was at the hospital the consultant didn't seem sure of my results. There was some obstructive apnoea but she seemed to think most were central. Mind you the machine is definitely helping and my daytime symptoms have definitely reduced. I go back to hospital at the end of the month and the data will then be analysed, so I should know more then. I have emailed the consultant to ask questions but have had no response. I am a big supporter of our NHS but it does seem that finance is playing a big part in what treatment is prescribed.

About 17 years ago I had laser surgery to my soft palette and evola and had my septum moved, at the time I didn't ask much about it I just thought it was for snoring.

Also I managed to sleep more with my mouth closed last night and didn't bite my cheeks or tongue thanks to reading threads on this site. So thanks for that

Unfortunately, the only data that your machine records is your usage. It does not record the number of events, type of events, etc. If they are telling that, they are lying to you. It seems really odd that thay would give you the most basic machine without data when you have have a good number of centrals. At the very least, they should have done a trial with an auto machine with full data.

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Who would have thought it would be this challenging to sleep and breathe at the same time?

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curems
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Re: New to cpap

Post by curems » Mon Oct 05, 2015 2:49 am

Do you have a choice of practitioners or the opportunity for a second opinion with your NHS? Although I've been extremely fortunate, I have read stories here about people having difficult to bad situations with their practitioners. Could it be that your practitioner doesn't specialize in sleep disorders and is just not very familiar with the problem? Perhaps another practitioner could help?

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Ian000
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Re: New to cpap

Post by Ian000 » Mon Oct 05, 2015 5:01 am

Hi
The machine does record the amount and type of apnoea apparently, it is just that it all goes onto the SD card.

I am not sure if I can get a second opinion. In fairness I guess it is best to carry on with the trial before I do. I am very encouraged so far though as it is definitely helping. I do think our NHS is way behind the US in treatment though. I may have to go private if I am not happy long term

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Julie
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Re: New to cpap

Post by Julie » Mon Oct 05, 2015 5:11 am

That machine only records the hours used - in the US it's done for 'compliance', so insurance co's will continue paying for it after seeing that the machine's being used. It does NOT (SD card or otherwise) give any useful data about your sleep patterns, the features that could need addressing individually, whatever they've told you. You already know you're compliant but not which components affect your OSA well or not and which could be tweaked if necessary.

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zoocrewphoto
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Re: New to cpap

Post by zoocrewphoto » Mon Oct 05, 2015 5:31 am

Ian000 wrote:Hi
The machine does record the amount and type of apnoea apparently, it is just that it all goes onto the SD card.

I am not sure if I can get a second opinion. In fairness I guess it is best to carry on with the trial before I do. I am very encouraged so far though as it is definitely helping. I do think our NHS is way behind the US in treatment though. I may have to go private if I am not happy long term

If your machine says "Escape" on the front, it does NOT. It records compliance data to the SD card. Unfortunately, not all doctors know what is included. And many equipment providers do their best to provide the cheapest machine possible. Technically, compliance data is data, so they tell the new user that the doctor will have access to data. But it is only hours of use.

If they tell you that they can see the amount of type of events, insist that they show you the data.

https://www.respshop.com/S9ComparisonChart.html

Check out this comparison chart. Specifically notice that only 2 Resmed S9 machines are blank for the lines: Escape & Escape Auto

CLINICAL EFFICACY DATA
Pressure
AHI
Leak
AI
HI
CAI

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Mask: Quattro™ FX Full Face CPAP Mask with Headgear
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Additional Comments: Resmed S9 autoset pressure range 11-17
Who would have thought it would be this challenging to sleep and breathe at the same time?

Ian000
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Re: New to cpap

Post by Ian000 » Mon Oct 05, 2015 5:36 am

Sorry my machine is actually a Resmed Autoset S9
I was looking at a generic user manual for it when I posted before

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zoocrewphoto
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Re: New to cpap

Post by zoocrewphoto » Mon Oct 05, 2015 5:39 am

Ian000 wrote:Sorry my machine is actually a Resmed Autoset S9
I was looking at a generic user manual for it when I posted before
Much better then,. The autoset is great,. You can download sleepyhead and/or ResScan free and see your own data.

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Mask: Quattro™ FX Full Face CPAP Mask with Headgear
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Who would have thought it would be this challenging to sleep and breathe at the same time?

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Pugsy
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Re: New to cpap

Post by Pugsy » Mon Oct 05, 2015 9:13 am

There is some data on the machine itself.
See the provider manual here for how to access it.
http://www.apneuvereniging.nl/forum/pdf ... manual.pdf

For the really detailed information you can use ResScan or SleepyHead software.
You can find information on how to obtain either or both here
https://sleep.tnet.com/equipment

The S9 AutoSet does tell you how many centrals you are having and in your situation it's important.
A few may not be that big of a deal but having a lot of them could be.
You need to be using the software to see for sure what is going on.

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Ian000
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Re: New to cpap

Post by Ian000 » Mon Oct 05, 2015 10:52 pm

Thanks for that, I have found the basic information on machine. Last night my AHI was 8.6 this is down from 20 when I had my sleep study done and I do feel so much better. Was wondering how much other people have been able to reduce AHI?
I only have access to a tablet at home at the moment as my PC is broken, so I will have to wait a little while before I can download the data and see what type of apnoeas I am still getting
Ian

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Re: New to cpap

Post by zoocrewphoto » Mon Oct 05, 2015 10:56 pm

Ian000 wrote:Thanks for that, I have found the basic information on machine. Last night my AHI was 8.6 this is down from 20 when I had my sleep study done and I do feel so much better. Was wondering how much other people have been able to reduce AHI?
I only have access to a tablet at home at the moment as my PC is broken, so I will have to wait a little while before I can download the data and see what type of apnoeas I am still getting
Ian

My sleep study was 70 ahi, and I did not reach REM. Most likely a full night of sleep would produce a higher untreated ahi.

With cpap, I am almost always below 1.7 and often below 1. I believe I have had 3 nights in over 3 years that exceeded 5.

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Mask: Quattro™ FX Full Face CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Resmed S9 autoset pressure range 11-17
Who would have thought it would be this challenging to sleep and breathe at the same time?

Ian000
Posts: 8
Joined: Sun Oct 04, 2015 1:02 pm
Location: North Wales uk

Re: New to cpap

Post by Ian000 » Mon Oct 05, 2015 11:15 pm

70 AHI must have been awful for you.I am really encouraged, I go back to hospital at the end of month and I think they may be able to adjust settings a little to reduce them further. Mind you in comparison to how I have been feeling I am definitely so much better already.
I am also adjusting to wearing the mask now, , haven't bitten my tongue or cheeks for last couple of nights and sores are healing,, loosened the mask very slightly which helped.

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Re: New to cpap

Post by zoocrewphoto » Mon Oct 05, 2015 11:18 pm

Ian000 wrote:70 AHI must have been awful for you.I am really encouraged, I go back to hospital at the end of month and I think they may be able to adjust settings a little to reduce them further. Mind you in comparison to how I have been feeling I am definitely so much better already.
I am also adjusting to wearing the mask now, , haven't bitten my tongue or cheeks for last couple of nights and sores are healing,, loosened the mask very slightly which helped.

I had no idea I was that bad. I had a lot of symptoms, but I had no idea they were related. I learned about some of them as I watched a video before the sleep study. And I learned about some of the others as they disappeared. This is something creeps up on is,so we have no idea how bad it is until we have a good night and feel the difference. That was impressive. Made me wish I had done it many years earlier.

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Mask: Quattro™ FX Full Face CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Resmed S9 autoset pressure range 11-17
Who would have thought it would be this challenging to sleep and breathe at the same time?