Sleep Apnoea Forum Bringing Help + Support to the Patient
Welcome to our Forum - Feel Free to Introduce Yourself Here.
Welcome to the Hope2SleepGuide Forum, which is a service run by the Hope2Sleep Charity founded by Kath Hope with a marvellous team of trustees and volunteers.
Kath herself has severe sleep apnoea and hypoventilation/hypercapnia, and has used CPAP for several years and is now on non-invasive ventilation. Our trustees and volunteers are all either sufferers of sleep disordered breathing or clinicians/medics working in this field, and most importantly, we are all passionate in supporting (with empathy) others and raising awareness to help people live healthier and more energised lives.
Whilst we do not give medical advice, more often than not, with support, tips and knowledge, people can overcome any problems experienced with our therapy, and there is a whole page dedicated to this on the website http://www.hope2sleep.co.uk/tips-for-problems-sleeping-with-cpap-or...
Please come and join us, and don’t feel obligated to use your ‘real’ name if you prefer to remain anonymous as this is a public forum. Don’t be shy in posting and sharing, as we’re all in this together and to help each other.
Best Wishes for good sleep!
Kath
Views: 12765
Replies to This Discussion
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Permalink Reply by John Garbutt on
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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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duplcate
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Permalink Reply by Kath Hope on
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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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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
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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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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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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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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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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
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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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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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