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Permalink Reply by John Garbutt on November 27, 2021 at 12:21

Hi

I was looking something up on the internet about Philips Dreamstations and came across a recall announcement 

https://www.cpap.com/blog/philips-recall/  and I wondered if any body has had their machine repaired / replaced

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Permalink Reply by John Garbutt on November 27, 2021 at 12:38

duplcate

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Permalink Reply by Kath Hope on December 2, 2021 at 14:39

Hi John. We've known about this since June which is causing a tremendous backlog at the clinics and we're inundated about this safety issue at the charity. We're keeping everyone updated both in our Private Facebook Group and on the website on this link https://www.hope2sleep.co.uk/dreamstation-cpap-pro-or-auto-apap-mac...

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Permalink Reply by John Garbutt on December 5, 2021 at 9:26

Many thanks , I have applied to join the Facebook Group and will see what happens about a replacement

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Permalink Reply by Paul kenney on March 22, 2022 at 18:56

Thanks for accepting me. I've been a long stime sufferer of sleep apnoea and have been on auto cpap for 16 years. I never even knew this site existed until today I'm hoping a get some piece of mind here as I don't get any with my gp 

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Permalink Reply by Jonathan on March 22, 2022 at 19:31

Welcome.  I was diagnosed in 2009 at 80+ events per hour, but was discharged by the sleep clinic many years ago, on the basis that I was "self managing".  I bought an APAP machine, which allows me to see how well I am doing, and I buy my own masks as the clinic masks were very cumbersome.  I haven't mentioned CPAP to my GP since he first referred me for a sleep study.  Having said that, I'm quite happy with the arrangement :)

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Permalink Reply by Dave Austin on January 8, 2024 at 12:57

Hello all,

I was diagnosed with mild/moderate apnoea (15 per hour) back in the summer of '23, and have been using a full face mask CPAP machine for a few months now.

Not getting on at all well with it, but will post another thread on this; for now, I just wanted to introduce myself and say hi to you all.

It'd be nice to speak to people who understand what it's like to be utterly exhausted all the time, and that this is not just being 'a bit tired' (I'm sick of hearing this from people, and this includes my GP!).

Thanks,

Dave

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Permalink Reply by Kath Hope on January 8, 2024 at 13:53

We hear you Dave and empathise, as it's not 'normal' tiredness that comes with untreated sleep apnoea. Once you're on good CPAP treatment every night and for 7-9 hours of continuous sleep you'll start to feel better though. If you have a Facebook account our Private Support Group there is full of members who have previously struggled and would now never consider sleeping without their CPAP (me included) https://www.facebook.com/groups/hope2sleepcharity/

Also take a look at this article which addresses most issues we can face, for which there is always a solution https://www.hope2sleep.co.uk/tips-for-problems-sleeping-with-cpap-o... and of course you're welcome to start your own post for help.

Dave Austin said:

Hello all,

I was diagnosed with mild/moderate apnoea (15 per hour) back in the summer of '23, and have been using a full face mask CPAP machine for a few months now.

Not getting on at all well with it, but will post another thread on this; for now, I just wanted to introduce myself and say hi to you all.

It'd be nice to speak to people who understand what it's like to be utterly exhausted all the time, and that this is not just being 'a bit tired' (I'm sick of hearing this from people, and this includes my GP!).

Thanks,

Dave

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Permalink Reply by Jonathan on January 28, 2024 at 20:03

Hi

I was falling asleep in the barber's chair, and even the dentist's chair.  That's not "a bit tired".  But the good news is that CPAP has totally fixed my sleep apnoea.

Dave Austin said:

It'd be nice to speak to people who understand what it's like to be utterly exhausted all the time, and that this is not just being 'a bit tired' (I'm sick of hearing this from people, and this includes my GP!).

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Permalink Reply by Ejog1 on February 5, 2024 at 21:58

Hi, 

thanks for approving my application to the forum.

I was first diagnosed in 2007 although for many years I had been suffering from extreme tiredness, and my snoring and stunted breathing at night was often joked about amongst friends and family. So I suspect that I had been suffering from apnoea for decades. 

CPAP was literally life changing for me, suddenly I realised how everyone else felt, and that the exhaustion I lived with wasn’t normal. Initially I suffered from a mild burning sensation in my nose but the addition of a humidifier after a few months cured that problem. Other than that I’ve never had any issues with my CPAP machine, although I am a little worried now that my current machine is getting a bit worn out. (Resmed S9) 

I’m struggling to get through to the sleep clinic to ask if I’m due for a new machine, they have cancelled any email communications, asking patients to call instead, but that goes straight to an answer machine and so far they have failed to respond to my messages.

So, maybe I need to buy myself a new CPAP machine, in which case I’d like to hear from other CPAPers what they recommend. I’ve read mixed reviews of the latest Resmed S11, and the slightly older S10 seems to get much more love.

Also not sure if I should be staying with a fixed pressure machine, or looking at automatic machines. Can anyone switch to an automatic machine, or should I stay with fixed pressure like the machines I was given by the NHS?

Advice on this would also be helpful.

Anyway, I suspect this is far too long for a first post on the forum, but I’m pleased to be here, so forgive me for getting overexcited.

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Permalink Reply by Jonathan on February 5, 2024 at 23:06

Hello,

I was diagnosed about the same time as you, and also found CPAP therapy live-changing.  My original machine was an NHS issue Respironics, with no reporting or logging of data.  After a throat infection which wouldn't go away, I bought the humidifier add-on which was another game-changer.  The clinic discharged me, as I was self-managing.  Some years later I bought my own machine - a DeVilBiss Sleepcube (IntelliPAP) which was an automatic (APAP) model.  The great advantage is that it adapts to the optimal pressure.  For me that was around 6 cmH20 occasionally ramping up to 12, whereas the NHS machine was a constant 9 cmH2O.  Roll on many years and I have recently had heart surgery and the cardiologist was horrified that I had been discharged and wasn't being monitored.  (In truth, I was downloading data from the Sleepcube and monitoring myself.)  It took a few months to get reviewed by my Sleep Clinic (University College London Hospitals) who handed me a Resmed AirSense 10 Autoset machine with built-in SIM card, and included a humidifier when I requested it. Now they phone me regularly to discuss my therapy, and tweak settings on the machine.  I suspect (but don't know for sure) that due to the pandemic, and pressure on the NHS, remote monitoring is a boon for the clinic.  The Resmed isn't as good as the Sleepcube (it runs closer to 9cm most of the time) but it means the clinic can monitor me.  I mention all of this, because my Sleepcube was beginning to leak and I was looking to buy a replacement.  I might well have bought the Resmed card-to-cloud model as it's a lot cheaper, but it would not have been compatible with the sleep clinic.  I hope you get through to your sleep clinic; it would be upsetting to buy a machine if they were prepared to give you one which they could remotely monitor.  All the best!

Ejog1 said:

I’ve never had any issues with my CPAP machine, although I am a little worried now that my current machine is getting a bit worn out. (Resmed S9) 

I’m struggling to get through to the sleep clinic to ask if I’m due for a new machine, they have cancelled any email communications, asking patients to call instead, but that goes straight to an answer machine and so far they have failed to respond to my messages.

So, maybe I need to buy myself a new CPAP machine, in which case I’d like to hear from other CPAPers what they recommend. I’ve read mixed reviews of the latest Resmed S11, and the slightly older S10 seems to get much more love.

Also not sure if I should be staying with a fixed pressure machine, or looking at automatic machines. Can anyone switch to an automatic machine, or should I stay with fixed pressure like the machines I was given by the NHS?

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Permalink Reply by Antony Warren on August 24, 2024 at 13:10

So pleased to have found this site, thank you. I'm a retired doctor and have had OSA for about 20 years despite having a BMI of 23, only ever sleeping on my side and not smoking. Over that time I have had five successful procedures of radiofrequency to my soft palate and tongue, each of which kept me free of apnoea for about three years, along with a mandibular advancement splint towards the end of each remission. It was great to have no restriction on my sleep such as CPAP for so long. They were done by Prof. Bhik Kotecha at the Royal National Throat Nose & Ear Hospital. He has now retired from the NHS. He did another one privately for me a year ago but that didn't help and I developed a temporary perforation of my palate, so I'm not going to have any more surgery.

I was then lucky enough to get into the Royal Papworth Hospital CPAP Clinic after quite a short wait and I have been using it for two months. I took to it almost immediately and am managing an average of 7½ hours with it each night. The staff there are accessible by phone and will see you between appointments if needed. I'm using a Lowenstein Prisma Smart and F&P Simplus Mask. They have let me try two different sized masks and also an F&P Evora Full, which is just under the nose and round the mouth, but I prefer the Simplus.

I have a Viatom Checkme O2 pulse oximeter and ViHealth app, which provides a report on my overnight oxygen levels and pulse rate. Before I started CPAP my SpO2 was dipping as low as 70% 3 or 4 times a night, but now it's in the 90s all night. A sample of before and after reports are attached.

My only OSA symptom is the heart thumping that disturbs my sleep. I have never had any daytime sleepiness despite at one time having an Apnoea Hypopnoea Index of 33, putting me in the Severe OSA category. I put that down to being used to sleep deprivation during all those nights on call when I was working (!), but I heard an interesting lecture earlier this year at the Royal Society of Medicine by Dr D Gottlieb of Harvard University. He identified two populations of OSA sufferers, those who do and don't have daytime sleepiness. Heart and stroke complications are less common in the latter. How your heart responds to low oxygen also varies - rapid heart rate episodes are riskier. He said that AHI is a poor index of severity, because it does not measure the length of the dips in oxygen level, only their frequency. Someone who has a lot of short dips and a high AHI will be better off than someone who has a smaller number of long ones and a low AHI. A better index is Hypoxic Burden, which measures the length of time patients spend with a low oxygen level and he said this should be used to decide who most needs CPAP.

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