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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
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Replies to This Discussion
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Permalink Reply by Kath Hope on
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That last post was from me Amanda. I just realised I was signed in as the administrator, as I've been doing some changes LOL.
Kath
The SleepGuide Crew said:That's made my day Amanda................
Kath
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Permalink Reply by Roz B on
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welcome Amanda. glad that you have found 'us'.
I'm quite a 'newbie' really…..i have only been using CPAP since January and my biggest problem has been finding a comfortable mask. I have been getting great support though from my consultant, and finding Kath and the lovely people on here has been a godsend to me.
Wishing you good luck with the Therapy, hope it all works well for you
hugs roz xx
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Permalink Reply by Darryl Milligan on
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As Roz said, I think it is about finding the right mask for you. I had no success with Full Face, limited success with Nasal masks, but love sleeping with Nasal pillows. I look forward to going to bed now, and I only started on 19th Dec last. hope it works out for you. never lose hope.
Daz
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Permalink Reply by Amanda Farley on
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Thank you all for the welcome, I think I will cope okay with the mask once the humidifier is sorted and I've padded the bridge of my nose.
I never realised my extreme tiredness was down to sleep apnoea and it's really thanks to an ex that I found out. He said that he thought I had sleep apnoea and enouraged me to talk to my GP. I am still good friends with my ex and he is interested in how it's all going. I definitely feel more alert although am still tired but a cough is definitely not helping with that.
Am waiting to see how things are a few weeks down the line.
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Great to hear how positive you are Amanda, and as well as your extreme tiredness being improved, so will your overall health + hopefully you'll be protected against the biggest health risks. Some of the masks cause problems on the bridge of our noses, so when you pick up your humidifier they might light you try some alternatives. Another good fix if that fails is the Nasal Comfort Pads on the website. That was my biggest problem with certain masks in the early days and I have some horrendous pictures, which I just daren't publicise of my nose covered in sores. Try to address the problem before it gets worse and you're not left with a permanent scar like I am (thank goodness for foundation cream lol).
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Permalink Reply by Terry Vella on
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Amanda, welcome, when you get your humidifier, try to get a heated hose with it and that will save you getting hose covers. Most machines now come with them. A heated hose save you getting any condensation on your face.
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Unfortunately, here in the UK we don't get given a choice of what we get. It depends which clinic we're with as to what CPAP we get. That's unless we buy our own, but bearing in mind we get them given by the NHS most people don't.
Terry Vella said:Amanda, welcome, when you get your humidifier, try to get a heated hose with it and that will save you getting hose covers. Most machines now come with them. A heated hose save you getting any condensation on your face.
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Kath, the UK, US and Australia have different methods. We pretty much have to but them ourselves so we can get anything we want. If we have private health insurance, we get about 25% back, once a year. It has it's advantages and disadvantages, even though it cost me a couple of thousand dollars, I got what I wanted so can't complain.
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Permalink Reply by Christine Woods on
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Thanks. My husband has a CPAP, two hearing aids and retinitis pigmentosa. He says apart from needing a head transplant he is fine with no other known medical problems. He is retired but volunteers for hearing charity.
I retire end of May and have set up with the amazing support of others a sleep apnea carer, partner, family sef-help page at http://Facebook.com/bridgeton143 which seems to be well received.
The page has enabled me to be honest for my story as a sleep apnea partner and Invite all intererested sleep apnea carers, partners and families to join for making the page a success for raising awareness of all sleep apnea carer, partner, family related issues. Please click , comment and become a friend. I found this website through the help of Kath. They say a good friendship,can make real changes in,your life, please come and join me with the help of Kath and Mike
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Hi Amanda,
Great to hear that your treatment is going so well.
I've been using cpap for a fortnight and the bridge of my nose became very sorry after about a week. It happened to coincide with me switching from cleaning my silicon mask with mild so to just using warm water. When I resumed cleaning with soap, the bridge of my nose ceased to get sore when I am wearing my mask. If you aren't already, trying soaking yours in warm soapy water to see if that makes a difference. If you are already cleansing your silicon mask cushion that way, apologies for sticking my inexperienced oar in. Sleep well!
Amanda Farley said:Thank you all for the welcome, I think I will cope okay with the mask once the humidifier is sorted and I've padded the bridge of my nose.
I never realised my extreme tiredness was down to sleep apnoea and it's really thanks to an ex that I found out. He said that he thought I had sleep apnoea and enouraged me to talk to my GP. I am still good friends with my ex and he is interested in how it's all going. I definitely feel more alert although am still tired but a cough is definitely not helping with that.
Am waiting to see how things are a few weeks down the line.
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Permalink Reply by Diane Baker on
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Hi everyone, checking in as a newbie :) I am coming up to my 2nd anniversary on CPAP. Can't emphasise how much my life has improved. I am keen to help in any way I can, especially in spreading the word about OSA to the uneducated.
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Thank you for your positive message Diane, I am fairly new so it's good to ear how much better it will still get.
Diane Baker said:Hi everyone, checking in as a newbie :) I am coming up to my 2nd anniversary on CPAP. Can't emphasise how much my life has improved. I am keen to help in any way I can, especially in spreading the word about OSA to the uneducated.
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