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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 Renee Rowlands on
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Hello everyone! What a very interesting website. Hoseheads!!! Love it!
I placed my first order and received it very quickly, so thanks Kath!
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Permalink Reply by Kath Hope on
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Glad your order arrived quickly Renee, and 'hoseheads' tickled me too and we certainly need a sense of humour with our condition, bearing in mind we dress up like Darth Vader every night for bed!
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Permalink Reply by Duncan Anderson on
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Hi,
I am an expat Brit in Singapore and have been pretty much looking after myself treatment wise, since I was diagnosed.
I've spent an awful lot of time on research and would say that I am comfortable treating myself, although its a bit pricey not having any insurance that will cover it.
I have a huge amount of support from a couple of excellent forums in the US, and it seems like everyone that takes part is keen to share experiences and offer qualified advice.
I currently monitor myself using both Rescan software and Sleepyhead software. The latter is a free program that is a great tool for someone with the will to research and understand their Apnea.
I will be very happy to offer assistance, moral support and share information with this forum.
I'll be back in sunny Scotland for the Christmas vacation, and am looking forward to some snow!
I'll be travelling with the excellent Resmed Airsense 10 Auto and a couple of different nasal pillow masks, the P10 and the Nuance gels, which I am alternating with each other. The P10 is very light and minimally invasive but is prone to some large leaks, and the nuance is a little more cumbersome but so far no leaks.
All the best and I look forward to contributing here.
Duncan
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Welcome to the forum Daniel and good to hear you have knowledge and access to your own therapy
Many of us use Sleepyhead or official software to keep a check on our treatment, although unfortunately a lot of UK sleep clinics can only supply people with standard CPAP machines storing no data, except compliance.I haven't tried the P10, but did trial the Nuance before listing in on our website. I found it is the best nasal pillows mask I've tried regarding no leaks, and I gave it a thorough test to try forcing leaks, which was difficult but always a good sign! The mask hasn't been in the UK too long so we only have a couple of reviews of it so far http://www.hope2sleep.co.uk/products/121 but others using it have also been happy and my USA sleep tech friends/contacts are rating in highly with their patients.
Hope you get some snow at Christmas - apart from sun, it's my favourite weather
Duncan Anderson said:Hi,
I am an expat Brit in Singapore and have been pretty much looking after myself treatment wise, since I was diagnosed.
I've spent an awful lot of time on research and would say that I am comfortable treating myself, although its a bit pricey not having any insurance that will cover it.
I have a huge amount of support from a couple of excellent forums in the US, and it seems like everyone that takes part is keen to share experiences and offer qualified advice.
I currently monitor myself using both Rescan software and Sleepyhead software. The latter is a free program that is a great tool for someone with the will to research and understand their Apnea.
I will be very happy to offer assistance, moral support and share information with this forum.
I'll be back in sunny Scotland for the Christmas vacation, and am looking forward to some snow!
I'll be travelling with the excellent Resmed Airsense 10 Auto and a couple of different nasal pillow masks, the P10 and the Nuance gels, which I am alternating with each other. The P10 is very light and minimally invasive but is prone to some large leaks, and the nuance is a little more cumbersome but so far no leaks.
All the best and I look forward to contributing here.
Duncan
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Thanks for the welcome Kath, and I'll be visiting my daughter in Hull when I'm back so will be in your neck of the woods briefly.
I would certainly recommend trying the P10, it's a lot lighter in the top lip than the nuance. I have been alternating between the two masks, and would have erred on the nuance side for a better fit with regard to leaks. But it really is very difficult to choose between them, I just prefer the P10 as its so light an unobtrusive.
Horses for courses and all that.
Kath Hope said:Welcome to the forum Daniel and good to hear you have knowledge and access to your own therapy
Many of us use Sleepyhead or official software to keep a check on our treatment, although unfortunately a lot of UK sleep clinics can only supply people with standard CPAP machines storing no data, except compliance.I haven't tried the P10, but did trial the Nuance before listing in on our website. I found it is the best nasal pillows mask I've tried regarding no leaks, and I gave it a thorough test to try forcing leaks, which was difficult but always a good sign! The mask hasn't been in the UK too long so we only have a couple of reviews of it so far http://www.hope2sleep.co.uk/products/121 but others using it have also been happy and my USA sleep tech friends/contacts are rating in highly with their patients.
Hope you get some snow at Christmas - apart from sun, it's my favourite weather
Duncan Anderson said:Hi,
I am an expat Brit in Singapore and have been pretty much looking after myself treatment wise, since I was diagnosed.
I've spent an awful lot of time on research and would say that I am comfortable treating myself, although its a bit pricey not having any insurance that will cover it.
I have a huge amount of support from a couple of excellent forums in the US, and it seems like everyone that takes part is keen to share experiences and offer qualified advice.
I currently monitor myself using both Rescan software and Sleepyhead software. The latter is a free program that is a great tool for someone with the will to research and understand their Apnea.
I will be very happy to offer assistance, moral support and share information with this forum.
I'll be back in sunny Scotland for the Christmas vacation, and am looking forward to some snow!
I'll be travelling with the excellent Resmed Airsense 10 Auto and a couple of different nasal pillow masks, the P10 and the Nuance gels, which I am alternating with each other. The P10 is very light and minimally invasive but is prone to some large leaks, and the nuance is a little more cumbersome but so far no leaks.
All the best and I look forward to contributing here.
Duncan
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Wow, small world Duncan! Give me a shout if you need any accessories from the shop http://www.hope2sleep.co.uk/products whilst you're in Hull and you can save on postage
Hope you enjoy visiting family!
Duncan Anderson said:Thanks for the welcome Kath, and I'll be visiting my daughter in Hull when I'm back so will be in your neck of the woods briefly...........................
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Hi I have just joined today and thank God I found you. My name is Tam and I am a 47 year old male from Dundee, Scotland.
I was diagnosed with severe OSA in November last year with 80 AHI's. To be quite honest the last couple of months have been a nightmare. I am struggling with the therapy due mask issues (leaks, facial sores and coping with the high pressures) I avoid going to bed until I am really tired as I dread putting the mask on etc. I feel like my life has been torn away from me and living with CPAP has taken over my life. I really am starting to feel is it all worth it. My nurse at the sleep clinic has been excellent but I feel I need to interact with other people living with the condition.
By the way did I say Hi.
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Welcome Tam and glad you found us
It's good to hear that you have good support at your clinic and just as importantly that you got diagnosed with your severe OSA. Many of us get teething problems at first and I can promise you that I struggled myself for the first 6 months. You can read my brief story on the website http://www.hope2sleep.co.uk/page/my-story but I did water it down seeing as I shared it publicly. It was worse than I stated, and has my own mother not died of a heart attack at just 49 (she was definitely a sufferer too but undiagnosed) then I'd have given up in those early day, and never did I imagine one day CPAP would become my best friend that I would never ever sleep without!Good to hear you're starting to feel the benefits now, and feel free to start up a new discussion if you need any advice, tips or support.
Tam said:Hi I have just joined today and thank God I found you. My name is Tam and I am a 47 year old male from Dundee, Scotland.
I was diagnosed with severe OSA in November last year with 80 AHI's. To be quite honest the last couple of months have been a nightmare. I am struggling with the therapy due mask issues (leaks, facial sores and coping with the high pressures) I avoid going to bed until I am really tired as I dread putting the mask on etc. I feel like my life has been torn away from me and living with CPAP has taken over my life. I really am starting to feel is it all worth it. My nurse at the sleep clinic has been excellent but I feel I need to interact with other people living with the condition.
By the way did I say Hi.
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Hi Sandy and welcome to you too
(I did send you a email earlier as well). Glad you found us and it's great you found immediate benefit from CPAP 
I used to get deep strap marks myself and also marks from the cushion, but the strap marks are easily fixed by the Mask Strap Covers on the website, and I haven't added them yet, but we also have a plain cream. Here's the link to the straps (I've linked to the double thickness ones with you saying your marks stay with you until the afternoon, but we do have cheaper single fleece ones too for those that only get light marks or prefer more comfort than the horrible elastic straps feel) http://www.hope2sleep.co.uk/products/22
Sandy Davis said:Hello. I have suffered from sleep apnoea for about 4 years but have only just found this site. I have felt the benefit of using my CPAP machine from the outset but still have a few issues, however, I have already read suggestions which I think will help in a couple of areas.
The big problem I have is, I have to confess, one of vanity. The straps of my mask leave indentations in my cheeks - which are frequently commented on - so I wandered if anyone has any suggestions that might help. I have tried covering the straps in wadding, and try to sleep on my back, but I still have the marks - sometimes into the afternoon.
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Kath thank you for taking the time to reply. Finding this forum may just be the support I need and I intend to be as pro-active as possible. Thanks for having me.
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