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The Snoring & Sleep Apnoea Forums

Another CPAP Newbie (at last) - but it's not all good

If you have a story of success (or failure), then post it here for others to read.
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JamesB
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Joined: Mon Sep 05, 2016 1:21 pm

Another CPAP Newbie (at last) - but it's not all good

Post by JamesB » Tue Jan 10, 2017 11:14 pm

Hello Forum Members,

I posted a question last September about CPAP and M.A.Ds (or dental splints as the NHS prefer to call them), so I won't bother repeating my back-story. Suffice to say that after accepting that my (very expensive) custom dental device just wasn't making enough of a difference after almost a year, I went back to my GP practice. Armed with a home sleep study report (AHI 41 untreated) I was referred without fuss to my nearest NHS clinic, had a CPAP fitment trial in December, and was sent home for a month.

The first few days were pretty terrible: I woke up after just an hour or so with hideous bloating and gas, a dry throat and itchy nose. Having done some research before getting the PAP machine (a pleasantly top-of-the-line Resmed Airsense 10 Autoset), I put the SleepyHead software on my PC so I could see the data myself and looked forward to tracking my progress. I was told by the Sleep Tech that this advanced machine transmitted the same data daily to the NHS, allowing them to monitor my compliance and make any necessary adjustments to my prescription.

As I began to get used to my new sleeping condition I wasn't really feeling any benefit, and dropped the Sleep Centre an email after 20 days of therapy. I explained how things were going, that I was reviewing the data myself, and had tweaked the humidification setting and Ramp-on time. I mentioned that I was still suffering a lot of apnoea events and asked if it would make sense to increase the starting and max pressures, as well as querying the possibility of trying a nasal mask instead of the full-face mask provided. The next day I came home to an answerphone message thanking me for my email, letting me know that the settings had been changed, and that they would be reviewed again in the new year - a week before my appointment. This encouraged me greatly, but unfortunately set me up for a bit of a shock.

Today I had my 1-month review with the Sleep Tech I saw in December, and began enthusiastically telling her about my experience. Oh dear. I made the mistake of telling her that I had been downloading the data, and that I had turned on the EPR myself to make it easier to get to sleep. I was expecting positive feedback on my compliance, and a discussion of where things go next. Instead the next 50-odd minutes consisted mostly of a condescending riot act: how patients should not download their data because they don't understand what it means - and I'm forbidden from doing so, this is not my personal machine to play with, altering the prescription settings could get me kicked out of the clinic, the fact that I was flat on my back during my CPAP trial, was told in no uncertain terms NEVER to sleep on my back again, and haven't slept on my back since, still doesn't mean that I could try a nasal mask....and on...and on. I got packed off for a full year before my next review (because she was happy with the results, and did make some minor changes), and had to pointedly ask about durability of the mask etc. and the process of obtaining replacement parts because she was so distracted. She wasn't at all interested in my nightly rib-pain, or the experimentation with pillows to alleviate it.

I realise now my fatal error: in my enthusiasm I expected far too much. I have read many forums where people have been encouraged to take an active interest in their therapy and that compliance and overall success increase if patients feel involved in the process (I agree). Sadly, I think these were mostly in the USA and/or people privately funding their therapy and I naively forgot just how different life is on the NHS. If they really were looking at my sleep data regularly, surely the Tech would have seen that I had changed some settings weeks ago? They may receive the data daily but I'm no longer assured that they actually look at it unless prompted. I have lost confidence in my assigned Sleep Technician (no hope of switching to the lady who phoned), and am considerably gloomier about the future. This is perhaps an over-reaction, but then I'm not sleeping very well...!

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Sleep2Snore
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Joined: Tue Oct 14, 2008 10:20 pm
Location: Aberdeenshire

Re: Another CPAP Newbie (at last) - but it's not all good

Post by Sleep2Snore » Fri Jan 13, 2017 3:21 pm

I have an NHS machine and I adjusted it myself after downloading the manual from an American Sleep Apnoea forum.
I know the attitude of some staff stinks in the NHS, but they all assume that we are idiots and don't know any better.
The sleep nurse (who I have not seen in over 6 years now except to pick up spares) knows fine I adjust things to suit myself.
She just said to put it back to the settings I got it before coming in if there is a problem with it. :lol:
Don't be discouraged by the bitch from hell at your clinic. If you think you need more pressure or any other adjustments tell them.
If they do not like you doing it get them to adjust it via the Internet.
Humidity and ramp function should be adjustable by the end user anyway, this is comfort settings. Also EPR (Expiry Pressure Relief), this helps drop the pressure when breathing out and does help some people to breathe out against the pressure.

Gasses in the stomach and sore ribs are part of the course when you start out, you will soon get used to this or it will stop come time.

Don't let the bitch from hell bother you.
You should NOT adjust the maximum pressure though if you have a CPAP.
However, as you have an APAP and not a CPAP it should make no difference as the machine will supply what you need.
You can leave the top setting on MAx if you want, however, if you have a leak it will go to the max trying to make up for the leak and this can be very uncomfortable. As far as things go with an APAP, the closer the minimum pressure is the the normal running pressure (the pressure it normally rises to when you have an event) the easier it is to get on with. There is not so high a rise in pressure to disturb you when asleep.
As you have an APAP, there is no reason why you can't adjust the lower setting for comfort.
I don't understand her attitude!
As long as you do NOT lower the maximum pressure lower than you need. This is what she will be afraid of.
The reason they do not like you downloading your data is there have been a lot of cases where people have wiped the data from the cards.
However, as long as you are careful there is nothing wrong with you looking at your data.
Just don't make the mistake of telling her :lol:
S2S - Sleep2Snore

JamesB
Private Snorer
Posts: 3
Joined: Mon Sep 05, 2016 1:21 pm

Re: Another CPAP Newbie (at last) - but it's not all good

Post by JamesB » Tue Jan 24, 2017 12:22 am

Hi Sleep2Snore,

I'm so glad it isn't just me! In hindsight perhaps she is used to dealing with people so zoned-out from lack of quality sleep that they just sit there and nod (and maybe a few idiots too), and who constantly phone them up with banal complaints. I suppose my eager intervention could also be taken as undermining the 'expert', but I think we all understand that feeling crappy in the morning and spikes in AHI the previous night are no coincidence: up to a point the statistics don't mean one thing to the layman and something else to the Sleep Techs. Far from becoming obsessed with perfection, as soon as I start feeling 'normal' in the morning I don't give a monkey's what the numbers are!

At least I know what the score is now, and will indeed start emailing or phoning my suggestions in :wink:

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Sleep2Snore
General Snorer
Posts: 2868
Joined: Tue Oct 14, 2008 10:20 pm
Location: Aberdeenshire

Re: Another CPAP Newbie (at last) - but it's not all good

Post by Sleep2Snore » Tue Jan 24, 2017 2:16 pm

The main thing is that you begin to feel better.
I think those that look for perfection get obsessed with numbers.
As long as you feel good and not fatigued you are doing fine.
S2S - Sleep2Snore

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