Advice please

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Permalink Reply by Kath Hope on May 30, 2015 at 17:18

Sorry to hear of your struggles Helen which sounds like the APAP was certainly better for you than the CPAP.  Sadly, many hospitals are struggling with funding for being able to give out APAP.  There are lots of people who do better on APAP, but at the same time there are also people who get better therapy with CPAP.  It's a shame the only answer was to lower the pressure, as there's no guarantee the pressure of 11 would have treated you as good as the set pressure of 12, and of course with no data onboard the Resmed Escape you wouldn't have had evidence of this.  If this pain is constant then it's not fair for you to put up with this, and I would call the hospital and ask if you could be given APAP, as often the hospitals can give them out in certain cases.  Meanwhile, try raising the bed at the head end by 4-6 inches, as this can help with the pain, which sounds like aerophagia.  It can also happen if you're getting lots of mask leaks or if you're on a nasal mask and need a full face one.

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Permalink Reply by Bill Thomson on June 9, 2015 at 11:36

I think it is well worth asking. I had a review this morning with my sleep clinic and when they said my S8 Escape would have to be replaced, because it was old and the model is not supported by my current health authority, I asked for an APAP because the one I was lent right at the start of my therapy over 18 years ago worked so much better both for me and my partner than the basic CPAPs (Sullivan Mk5, yes that long ago, Fisher & Paykel, then S8 Escape) I have been issued with ever since they readily agreed to get one for me.

I am actually very impressed with Worthing Hospital which although the sleep department is very small, has proved far more accommodating and helpful than the other, much more highly rated, clinics I have used in the past.

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Permalink Reply by Helen McKeown on June 20, 2015 at 17:57

Thanks for your replies

Update - I was told to turn my machine down to 9 several weeks ago because of my difficulties, the hospital would rather I get the use of my machine for some hours.  The hospital have agreed I will get an APAP in July and last week they gave me an oximeter to use overnight and will get back to me with the results.  

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Permalink Reply by Kath Hope on June 24, 2015 at 13:30

Great to hear you're able to get APAP Helen soon

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Permalink Reply by Helen McKeown on August 1, 2015 at 19:05

Update:

Well I've now had my APAP machine for 2 weeks and what a difference, I've virtually no pain and am getting between 7-8 hours straight, energy levels are starting to rise.  I've also lost 2.5 stone from April and my average pressure has went from 13.8 to 11.2.  Now all I have to do is sort the leaks 

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Permalink Reply by Bill Thomson on August 2, 2015 at 7:07

That is really good to hear. Without doubt losing weight makes a difference, and the difference is probably as much or more to your general well-being as your sleep. Lower weight combined with better sleep definitely gives you more energy too. You have done really well to lose so much weight in that time. And it sounds as if the Autoset suits you so much better. I find with mine the pressure is around 6-8 most of the time and very occasionally goes up to almost 10 - maximum is set to 14. My Escape was on 10 or 12 all the time, so obviously more than I needed for 99% of my sleep.

I do hope you get a mask and/or liner that suits you and doesn't leak.

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Permalink Reply by Kath Hope on August 4, 2015 at 23:39

That's brilliant news Helen   The new Silent Night Mask Liners are proving brilliant for helping with leaks http://www.hope2sleep.co.uk/products/134 and also bear in mind that you may need a smaller mask now that you've lost 2.5 stone, which is also awesome news.  Onwards and upwards.........!

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