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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: 13125
Replies to This Discussion
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Permalink Reply by Simon Carr on
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Hi, Thank you for allowing me to join this forum.
I have been on CPAP for the last 7 months now. My consultant diagnosed me with Floppy Larynx Syndrome as part of my Sleep Apnoea. Also my AHI was 77.
So far I'm really happy with the benefit it has provided me as before the Sleep Apnoea was diagnosed it was causing me some serious problems. I was finding that I would fall asleep during my work hours and wake up with no knowledge to me doing so.
My girlfriend would also notice that on a night I would snore a lot and often stop breathing on numerous occasions.
It wasn't until my employer at the time sent me a letter of disciplinary action for my problems (unfortunately they only cared about how the company were effected than it's employees well being) that I had to visit my GP who signed me off for depression and referred me to the sleep clinic.
Now 7 months later I'm in a better job and feel much better from the CPAP machine with the only issue being the red mark it leaves on my face in a morning which I have ordered some mask liners to see if it makes a difference.
I highly recommend to anyone that is going through the same issues as I did to speak to their doctor.
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Permalink Reply by Kath Hope on
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Hi Simon and welcome to the forum. It's great to read your story and a prime example of how badly untreated sleep apnoea can affect people. Sorry to hear you had to go through a tough time, but fab to hear it sounds like you've been able to turn all that negativity into a positive outcome now
Simon Carr said:Hi, Thank you for allowing me to join this forum.
I have been on CPAP for the last 7 months now. My consultant diagnosed me with Floppy Larynx Syndrome as part of my Sleep Apnoea. Also my AHI was 77.............................................
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Permalink Reply by Amelia Kennedy on
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Hi all, just saying "hello" to fellow sleep apnoea sufferers. I'm 59 and have been using Nippy ventilators for the last 20 years for my combination apnoea caused by a brain haemorrhage. I'm treated at Papworth and make 6 monthly visits for an overnight study, though it's 100 miles from where I live. I've had to change from a Nippy 2 to Nippy 3 now as the former is obsolete, as was my antiquated mask. The transition is anything but smooth ,,, the machine is OK and much lighter (a huge bonus!), but alarms with every movement during the night. Every "new" mask I've tried leaks like hell and the answer from the nurses at Papworth (who I've generally got nothing but praise for) is always "tighten the straps", which I get very annoyed by as I wake up with friction burns on my face and nose ... not a pretty sight! Thank god for this website ... I am now able to tolerate the Resmed Airfit F10 with the help of a mask liner, but still get a few leaks. I'm thinking of trying the USA's Pad-A-Cheek (available on ebay) and wonder if anyone has tried this? I'm not sure if it's mainly to help with leakage or for comfort, but would love to know if anyone has tried it. Take care all x
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Hi Amelia. I know we've spoken before via email The answer isn't to tighten the straps as if they're too tight that will cause leaks. There's a chance your mask isn't the correct size so maybe they could let you try a different one. Regarding the liners on the Airfit F10 mask, have you seen on the website that there are specific fitting instructions for the F10 and F20. If you go to this link you can scroll down and see the images and instructions http://www.hope2sleep.co.uk/silent-night-mask-liners.html Also make sure you loosely fit the liner as some people pull them a bit tight when attaching the sticky pads.I've not personally tried the liner you mention and aren't aware of many in the UK who have.
Amelia Kennedy said:Hi all, just saying "hello" to fellow sleep apnoea sufferers. I'm 59 and have been using Nippy ventilators for the last 20 years for my combination apnoea caused by a brain haemorrhage. I'm treated at Papworth and make 6 monthly visits for an overnight study, though it's 100 miles from where I live. I've had to change from a Nippy 2 to Nippy 3 now as the former is obsolete, as was my antiquated mask. The transition is anything but smooth ,,, the machine is OK and much lighter (a huge bonus!), but alarms with every movement during the night. Every "new" mask I've tried leaks like hell and the answer from the nurses at Papworth (who I've generally got nothing but praise for) is always "tighten the straps", which I get very annoyed by as I wake up with friction burns on my face and nose ... not a pretty sight! Thank god for this website ... I am now able to tolerate the Resmed Airfit F10 with the help of a mask liner, but still get a few leaks. I'm thinking of trying the USA's Pad-A-Cheek (available on ebay) and wonder if anyone has tried this? I'm not sure if it's mainly to help with leakage or for comfort, but would love to know if anyone has tried it. Take care all x
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Permalink Reply by JonnyJ on
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Hi All,
Just here to introduce myself to this wonderful forum and fellow hoseheads! (As we were very amusingly described back at the beginning of this thread).
I'm Jonny, a 42 year man and I have been on CPAP for around four months now, using a Respironics DreamStation and an Amara View mask. I did start out with the nasal DreamWear mask (and would have loved it if it had been right for me) but we didn’t get on
. I think I have definitely noticed health improvements over the last four months, and look forward to these continuing 
.I came to a diagnosis of mild to moderate Sleep Apnoea through a diagnosis of a heart condition, so a different journey to most, and if you ever want to know my story just ask. I’m happy to share!
I would like to say how wonderful all my contact has been with Hope2Sleep; to quote a line or two from my review when I hired the SleepView overnight kit: “I feel I have to say how I cannot thank them (and Kath in particular) enough for everything they have done for me…It is funny to think but worth saying that … the Hope2Sleep charity have probably extended my life or, just maybe, saved it.”
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Hi Kath, thanks for the reply!
I've tried every size of (possibly) every available mask and they all leak. Thanks for the link ... I'll take a look.
I may well try one of the pad-a-cheeks as the reviews are pretty good and they're not too expensive on ebay. If I do go ahead, I'll report back.
Kath Hope said:
Hi Amelia. I know we've spoken before via email The answer isn't to tighten the straps as if they're too tight that will cause leaks. There's a chance your mask isn't the correct size so maybe they could let you try a different one. Regarding the liners on the Airfit F10 mask, have you seen on the website that there are specific fitting instructions for the F10 and F20. If you go to this link you can scroll down and see the images and instructions http://www.hope2sleep.co.uk/silent-night-mask-liners.html Also make sure you loosely fit the liner as some people pull them a bit tight when attaching the sticky pads.I've not personally tried the liner you mention and aren't aware of many in the UK who have.
Amelia Kennedy said:Hi all, just saying "hello" to fellow sleep apnoea sufferers. I'm 59 and have been using Nippy ventilators for the last 20 years for my combination apnoea caused by a brain haemorrhage. I'm treated at Papworth and make 6 monthly visits for an overnight study, though it's 100 miles from where I live. I've had to change from a Nippy 2 to Nippy 3 now as the former is obsolete, as was my antiquated mask. The transition is anything but smooth ,,, the machine is OK and much lighter (a huge bonus!), but alarms with every movement during the night. Every "new" mask I've tried leaks like hell and the answer from the nurses at Papworth (who I've generally got nothing but praise for) is always "tighten the straps", which I get very annoyed by as I wake up with friction burns on my face and nose ... not a pretty sight! Thank god for this website ... I am now able to tolerate the Resmed Airfit F10 with the help of a mask liner, but still get a few leaks. I'm thinking of trying the USA's Pad-A-Cheek (available on ebay) and wonder if anyone has tried this? I'm not sure if it's mainly to help with leakage or for comfort, but would love to know if anyone has tried it. Take care all x
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It's harder for people like you and I Amelia because you being on the Nippy and me being on the VPAP mean we are on a lot higher pressures than people on CPAP. It's certainly worth trying anything you see out there. Those products aren't something we'd supply at the charity though as they would work out expensive due to import duties and shipping from the USA, but anything is worth a try. Certainly look at the link I shared first though x
Amelia Kennedy said:Hi Kath, thanks for the reply!
I've tried every size of (possibly) every available mask and they all leak. Thanks for the link ... I'll take a look.
I may well try one of the pad-a-cheeks as the reviews are pretty good and they're not too expensive on ebay. If I do go ahead, I'll report back.
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Aw, thank you so much Jonny and it truly is a pleasure to be part of the journey to people being signposted to better health and, hopefully, life-changing benefits
The DreamWear mask is a fabulous one for nose breathers, but for people like you and I who simply cannot rely on nose breathing, then the Amara View is one of the most highly rated masks for mouth breathers (the FitLife and Hybrid being 2 other good ones and there are others.....). I've actually just replied to David on a different discussion on this forum http://hope2sleepguide.co.uk/forum/topics/another-benefit-of-bpap and pointed out how cardio issues and sleep apnoea are so much related. It's a pity all cardio consultants aren't joining the dots! Contact me directly Jonny at kath@hope2sleep.co.uk as it would be good to get your story on our 'Patient Stories' link http://www.hope2sleep.co.uk/patient-stories.html
JonnyJ said:Hi All,
Just here to introduce myself to this wonderful forum and fellow hoseheads! (As we were very amusingly described back at the beginning of this thread).
I'm Jonny, a 42 year man and I have been on CPAP for around four months now, using a Respironics DreamStation and an Amara View mask. I did start out with the nasal DreamWear mask (and would have loved it if it had been right for me) but we didn’t get on
. I think I have definitely noticed health improvements over the last four months, and look forward to these continuing .I came to a diagnosis of mild to moderate Sleep Apnoea through a diagnosis of a heart condition, so a different journey to most, and if you ever want to know my story just ask. I’m happy to share!
I would like to say how wonderful all my contact has been with Hope2Sleep; to quote a line or two from my review when I hired the SleepView overnight kit: “I feel I have to say how I cannot thank them (and Kath in particular) enough for everything they have done for me…It is funny to think but worth saying that … the Hope2Sleep charity have probably extended my life or, just maybe, saved it.”
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Hi Kath,
My pleasure, and nothing but the truth - what you do is wonderful!
I also tried the Amara Gel mask which was very good in helping with symptoms, but did give me many red marks on my face and a rather painful point on the bridge of my nose - all, obviously, alleviated with the View mask.
I would of course love to be one of your Patient Stories, I will get in touch on your email as suggested.
Sleep well!
JonnyJ.
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Great.....will look forward to hearing from you Jonny. This is where we put patient stories http://www.hope2sleep.co.uk/patient-stories.html
JonnyJ said:Hi Kath,
My pleasure, and nothing but the truth - what you do is wonderful!
I also tried the Amara Gel mask which was very good in helping with symptoms, but did give me many red marks on my face and a rather painful point on the bridge of my nose - all, obviously, alleviated with the View mask.
I would of course love to be one of your Patient Stories, I will get in touch on your email as suggested.
Sleep well!
JonnyJ.
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Permalink Reply by sharon on
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hello, I am sharon. I have a CPAP machine and full face mask, Been using it about 3 weeks, but i am struggling with it.
ON THE GOOD SIDE i now dont need a nap every afternoon and can stay up after 8pm
ON THE OTHER SIDE, I really struggle every night for ages to get it to fit, it is either blowing air over my eyes or making whistling/farting noises. Every time i swallow or change from nose to mouth breathing i destroy whatever seal i may have. I guess it works a bit as I'm not so tired next day, but i end up ripping it off about 3am most nights.
I really want to persevere with it, have no choice really.
Any helpful comment would be very welcome, thank you.
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Permalink Reply by Iain Noble on
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Hi Sharon,
You don't say what brand of mask you are using? I have this one
and provided I adjust the straps correctly it functions very well.
You may also find a custom CPAP pillow helps.
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