"Just to tidy this up, I finally had an in-person review by my sleep clinic yesterday, who agreed the ResMed AirSense 10 was "wheezy" and replaced the machine."
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: 12999
Replies to This Discussion
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Permalink Reply by Kevin Morgan on
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I'm glad it went well
K
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Permalink Reply by Kath Hope on
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Great to hear the appointment went well Riki, and interesting to discover your Dad also had sleep apnoea, as it definitely runs in families. I too can trace my sleep apnoea back to childhood and my Mum had it too. Hope you got on better with the new mask last night x
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Hi David, and welcome to the forum :) Can you check your message box please as I've sent you a private message? Thanks.
David Reece-Belsey said:Hello
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Permalink Reply by Mish Capeling on
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Hello,
My name is Mish and I have been recently diagnosed with OSA following a period of denial. My Mum (GlassDaisy on here) was diagnosed a couple of years ago following a pre-op check, knew I had similar problems, and encouraged me to seek help. As I said, I was resistant at first, but the constant doggone tiredness made me act. Knowing a little bit about the condition through Mum has helped, as did her recommendation that I ask to be referred to the Bostonian, which although not far from me, is not the usual referral centre for my area.
The staff at the Bostonian have been great in explaining everything to me (and hubby) and when I told them I have an issue with people putting 'things' near my face (traumatic forehead sutures as a child), allowed me the time to position the mask over my mouth, myself, before assisting with the strap adjustment. This meant I had none of the usual feelings of panic, and was especially appreciated considering I was the last patient in that days clinic and my consultant was ready to go home!! (A big thank you Mr Antonios)
I have been given the Phillips Respironics DreamStation Cpap machine, with the Amara View mask, and even with the air feeling very cold and the occasional jiggle to maintain the seal, so far so good - although it is only day two!
I know I have had an unusually positive start from talking to mum, with ill fitting masks being a particular issue. I am fortunate that I have followed Mums journey with Cpap and knew what to expect when my turn came. For Mum, it was the support from here, in particular Kath (who she speaks very highly of) that has kept her going.
On another note, I think 'hose heads' is a great name for us, that really made me chuckle.
Regards, Mish
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Permalink Reply by Roz B on
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Hi Mish
You couldnt have gone to a better place. Mr Antonio is very helpful, as is his colleague Mr Oko. Dont be worried about asking to change the mask if you are struggling at any time. They never lost patience with me once, and Kath knows i was getting through several trials of masks. I lost count in the end! I got there though, also with a lot of help from Kath.
That was four years ago now!
I would never say i like my CPAP, but its part of me now.
Well done for taking the plunge. I'm sure you will reap the benefits. xx
Mish Capeling said:Hello,
My name is Mish and I have been recently diagnosed with OSA following a period of denial. My Mum (GlassDaisy on here) was diagnosed a couple of years ago following a pre-op check, knew I had similar problems, and encouraged me to seek help. As I said, I was resistant at first, but the constant doggone tiredness made me act. Knowing a little bit about the condition through Mum has helped, as did her recommendation that I ask to be referred to the Bostonian, which although not far from me, is not the usual referral centre for my area.
The staff at the Bostonian have been great in explaining everything to me (and hubby) and when I told them I have an issue with people putting 'things' near my face (traumatic forehead sutures as a child), allowed me the time to position the mask over my mouth, myself, before assisting with the strap adjustment. This meant I had none of the usual feelings of panic, and was especially appreciated considering I was the last patient in that days clinic and my consultant was ready to go home!! (A big thank you Mr Antonios)
I have been given the Phillips Respironics DreamStation Cpap machine, with the Amara View mask, and even with the air feeling very cold and the occasional jiggle to maintain the seal, so far so good - although it is only day two!
I know I have had an unusually positive start from talking to mum, with ill fitting masks being a particular issue. I am fortunate that I have followed Mums journey with Cpap and knew what to expect when my turn came. For Mum, it was the support from here, in particular Kath (who she speaks very highly of) that has kept her going.
On another note, I think 'hose heads' is a great name for us, that really made me chuckle.
Regards, Mish
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Welcome to our world of 'hose blowers' Mish and yes I know your Mum well, and like her am relieved you got your diagnosis. Great to hear you have good support from your clinic, and of course your Mum's experience will help you get good therapy too. Onwards and upwards.....
Mish Capeling said:Hello,
My name is Mish and I have been recently diagnosed with OSA following a period of denial. My Mum (GlassDaisy on here) was diagnosed a couple of years ago following a pre-op check, knew I had similar problems, and encouraged me to seek help. As I said, I was resistant at first, but the constant doggone tiredness made me act. Knowing a little bit about the condition through Mum has helped, as did her recommendation that I ask to be referred to the Bostonian, which although not far from me, is not the usual referral centre for my area.................................................
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Permalink Reply by Sleep2snore on
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Mish Capeling said:Hello,
My name is Mish and I have been recently diagnosed with OSA following a period of denial. My Mum (GlassDaisy on here) was diagnosed a couple of years ago following a pre-op check, knew I had similar problems, and encouraged me to seek help. As I said, I was resistant at first, but the constant doggone tiredness made me act. Knowing a little bit about the condition through Mum has helped, as did her recommendation that I ask to be referred to the Bostonian, which although not far from me, is not the usual referral centre for my area.
The staff at the Bostonian have been great in explaining everything to me (and hubby) and when I told them I have an issue with people putting 'things' near my face (traumatic forehead sutures as a child), allowed me the time to position the mask over my mouth, myself, before assisting with the strap adjustment. This meant I had none of the usual feelings of panic, and was especially appreciated considering I was the last patient in that days clinic and my consultant was ready to go home!! (A big thank you Mr Antonios)
I have been given the Phillips Respironics DreamStation Cpap machine, with the Amara View mask, and even with the air feeling very cold and the occasional jiggle to maintain the seal, so far so good - although it is only day two!
I know I have had an unusually positive start from talking to mum, with ill fitting masks being a particular issue. I am fortunate that I have followed Mums journey with Cpap and knew what to expect when my turn came. For Mum, it was the support from here, in particular Kath (who she speaks very highly of) that has kept her going.
On another note, I think 'hose heads' is a great name for us, that really made me chuckle.
Regards, MishHi Mish,Glad you came to admit you have a problem, it has so much implications on your future health and well being. There are a lot more woman suffering from OSA than you would think and like you a lot are still in denial, which is a shame as the help is there waiting for them as you have found out. Shame that some doctors have to be pushed before sending some people for a study, but it sounds like you didn't have that problem.It is so nice to see staff in such places take the time to help as your consultant did along with his staff. It is so nice to see some people still take some pride in their job.I hope everything goes well for you in your new venture into joining the Hoseheads.i recently had to have a scan (MRI) and the two ladies there were so patient with me that the scan actually took place despite three previous attempts failing due to me being very claustrophobic. The ladies took things very slowly and even allowed someone to come in and stand beside the MRI scanner to hold my hand. They took it in stages and even took me out of the tube in the scanner (I had to lay very still when they did this), but it gave me the extra help I needed to go through with the 45 minute scan.I went to Edinburgh Sleep Clinic at the hospital (not the private one) and one nurse spent ages trying masks after I had problems with masks I already had tried to find one that would work. It is so satisfying when staff take the extra time to help. You hear so much bad things about hospitals and staff that the good ones get lost in it all. Most staff are good, but there are those that go the little bit extra, I am glad you found one along with the staff there. Well done to them and well done you for helping yourself.Hope all goes well for you and yours.S2S
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Permalink Reply by Sam on
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Good Afternoon All,
Just received the mask covers today and I am hoping that the reviews are as good as they say. I am looking forward to an evening back on the full mask as the nasal one is starting to cause air leakage - is it me or are those nose pieces a strange shape - or do I have a strange nose - polite replies only please..... Fell asleep on the couch for the whole night and woke up this morning exhausted so looking forward to having a night of no leakage, good sleep and feeling refreshed in the morning!!
Great to have found this forum where I can talk to people like me - I feel we are made to believe by the medical profession that all the problems we have a just 'us' doing it wrong. Not one of the people at my clinic have Apneoa so how can they know how to help me? Now I have you all !!! Thank You
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Hi Samantha and glad you found us :) I can honestly say, hand on heart (and I say this on the public forum), that we've never had a complaint about the liners once people have fitted them correctly and once people have tried them, they usually hate using their masks without one. I'm sure you don't have a strange nose lol, but the masks are a very individual thing, in that 'what suits one person, doesn't always suit another' so if you're having any problems speak with your clinic who will hopefully have a good range to find what suits you. If you're a mouth breather then you do really need to use your full face mask, or a chin strap with a nasal one, for good therapy.
I was speaking to your Mum earlier and understand she found us for you after reading the Daily Mail article I was featured in. Glad you found us, and I've sent you an email.
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So - I am proud to announce I am now a true CPAP sleeper - this hosehead has finally found the solution in the guise of the mask covers. The difference is totally amazing - I can sleep though the night - something which has alluded me for a year of CPAPing. These really have changed my life. A week on and I can honestly say that apart from the usual stress of life generally that I sleep as I should - in fact one night I sleep for an overwhelming 12 hours!!!!!!!!!!!!!!!!!!!!!
If anyone has any issue with mask leakage, night sweating which causes the mask to slip, or general aversion to the silicon which covers the mask then these covers are for you. I can only say thank you and I will continue to update you with progress as I am one of those pesky people who things work for, for a while then all goes back to chaos, so keep up with this thread and this hosehead will provide you with the mask cover update as she progresses through her journey.
MASSIVE thanks again to my Mum for reading the Daily Mail with Kath Hope bearing all that is Sleep Apneoa !!!!!
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Fabulous news Sam, and good old Mum coming to the rescue :) It's the little things that can make such a huge difference to us 'hose heads' and I'm delighted to hear the Silent Night Mask Liners have done that for you - as well as countless others (myself included)!
Sam said:So - I am proud to announce I am now a true CPAP sleeper - this hosehead has finally found the solution in the guise of the mask covers. The difference is totally amazing - I can sleep though the night - something which has alluded me for a year of CPAPing. These really have changed my life. A week on and I can honestly say that apart from the usual stress of life generally that I sleep as I should - in fact one night I sleep for an overwhelming 12 hours!!!!!!!!!!!!!!!!!!!!!
If anyone has any issue with mask leakage, night sweating which causes the mask to slip, or general aversion to the silicon which covers the mask then these covers are for you. I can only say thank you and I will continue to update you with progress as I am one of those pesky people who things work for, for a while then all goes back to chaos, so keep up with this thread and this hosehead will provide you with the mask cover update as she progresses through her journey.
MASSIVE thanks again to my Mum for reading the Daily Mail with Kath Hope bearing all that is Sleep Apneoa !!!!!
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