Hope2SleepGuide

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

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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

duplcate

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...

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

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 

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 :)

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

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

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!).


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.

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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Latest Activity

jjimjam updated their profile
Wednesday
Kath Hope replied to Becky Murkin's discussion noisy humidifier normal?
"It sounds like you're getting rainout issues (condensation) so here's an article to help with this. www.hope2sleep.co.uk/water-in-the-mask-hose-known-as-rainout"
Tuesday
Becky Murkin posted a discussion

noisy humidifier normal?

Hello,I have an air sense 10 auto.When I have the humidifier and the heated tube plugged in it makes a sort of drumming noise. Like that at the gallows in films.Is this normal? It wakes me up  and I have to give up and switch off  for the night.See More
Tuesday
John posted a discussion

Dentists in Hull that know about Mewing ?

I was wondering if there are any dentists in Hull who know about John & Mike Mew, and changing jaw shape over time?I could add that I saw an ENT consultant recently and she said jaw shape, malocclusion, is genetic, which has become a debatable…See More
Apr 9
Profile IconKaren Mcleod, Fiona Watson, Teresa Hobbs and 5 more joined Hope2SleepGuide
Apr 3
Jonathan replied to John's discussion Airsense 10 -humidifier runs dry
"I did replace the tank in my SleepCube, and had to regularly take the silicone sealing gasket out and give it a goof clean, but not infrequently found it standing in a pool of water in the morning.  The machine sat on a tray because of…"
Mar 26
John posted a discussion

Nasal valve collapse

Does anyone have any experience of nasal valve collapse?Wondering if I have this but I don't know what the norm is.Been trying widgets that hold the nose open and it's like night and day.See More
Mar 24
John replied to John's discussion Airsense 10 -humidifier runs dry
"Wow it's the other way round for me.I found with the Sleepcube I'd often have a good bit of water still there in the morning. Today I woke up with a dry tank on the Resmed again and it's not on full heat or flow. I got it on 6…"
Mar 24
Becky Murkin posted a discussion

F20 AirFit small marking bridge of nose

Please help or give advice all wise people on here.I have had the Resmed F20 AirFit small mask for over a month. Seals yet…See More
Mar 19
Frances Knight replied to Frances Knight's discussion Air Sense 10 - changing pressure settings
"A very helpful reply Jonathan. I found the pressure setting for the full face mask to be too high when I changed to a nasal mask, but perhaps I should have persisted? I'll try again and I'll also discuss with the clinic whether an APAP…"
Mar 13
Jonathan replied to Frances Knight's discussion Air Sense 10 - changing pressure settings
"Ramble alert!  My history is that I spent part of each week at a different location, so bought a second machine identical to my fixed pressure NHS machine and set it up to match using the clinician menu.  This was a very long time…"
Mar 12
Frances Knight replied to Frances Knight's discussion Air Sense 10 - changing pressure settings
"Thanks Jonathan - I had seen the YouTube video. My question is really about the experience of people who have control of their pressure settings, for example those people who have bought their machines directly and not obtained them through an NHS…"
Mar 12
Jonathan replied to Frances Knight's discussion Air Sense 10 - changing pressure settings
"This is NOT a recommendation http://www.youtube.com/watch?v=VNUWhd2UgQM"
Mar 11
Frances Knight posted a discussion

Air Sense 10 - changing pressure settings

I have been successfully using my air sense 10 since OSA diagnosis, and my AHI is now under 2. I had an appointment with my clinic this week and have been told there is no need for further appointments and just to contact them if I need supplies or…See More
Mar 11
Swen Greve is now a member of Hope2SleepGuide
Mar 4
Jonathan replied to Sue Reeves's discussion A few questions..
"If you have a helpful GP, I would ask them to re-refer you to the sleep clinic."
Mar 3
Sue Reeves posted a discussion

A few questions..

A quick bit of backgroundDiagnosed with OSA about 7/8 years ago by my local sleep clinic and given a F &P Icon CPAP.  After a couple of follow-up appts to sort out any issues, I was sent on my merry way. I have had no further face to face…See More
Mar 3
Jonathan replied to John's discussion Airsense 10 -humidifier runs dry
"I previously had a DeVilbiss Sleepcube and the dehumidifier did sometimes run dry.  On the other hand I now have an AirSense 10 and it never runs dry, and I've had the humidity turned up high."
Feb 26
John posted a discussion

Airsense 10 -humidifier runs dry

Hi. I'm finding the Airsense 10 the hospital gave me, the humidifier chamber runs dry. It's not even on max settings, which I'm guessing would empty it a lot quicker. Seems like a big design oversight to me. Does anyone else have this trouble? The…See More
Feb 26
David Hudson posted a discussion

Decline in hearing

HiI have regular, well yearly check ups at work. One being a hearing test. Since having my cpap machine my hearing has declined rapidly in 1 ear.....could this be as a result of pressure? I believe I'm on 15cm p max h2o. I just use a nasal…See More
Feb 26

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