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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 Roz B on
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Thanks for the tip about the humidifier, i tend to use mine up high all the time, but will remember to turn it down when the nights get warmer. xx
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Permalink Reply by jo hale on
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Hi everyone
Didnt realise that so many people were like me!
Good to know I'm not alone.
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Permalink Reply by Terry Vella on
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Hi Jo and welcome, you will get a lot of good information from this site.
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Permalink Reply by stephen smith on
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Had a bit of a rough night last night. Took the mask off in my sleep and did not realise I had. Hope it doesn't happen again because it has affected my tiredness today.
I see that our collective nickname is "hosehead" that really made me chuckle. Thanks whoever came up with that.
A little more about me. I am a analytical chemist, basically looking for bad stuff in food for four days a week then one day plus a few hours I assist my girlfriend with her wedding stationery business called inspired by script and the remainder two days I design and make dichroic glass jewellery. If you would like to have a look then go to www.stevesmithjewellery.co.uk.
Well its getting a bit late now so on with my mask and sweet dreams here I come. Good night all hoseheads :o) x
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stephen, don't worry if it comes off at the start, it's all a process of getting used to it. Just see how you go the next night.
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Permalink Reply by Kath Hope on
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Oops, seem you spoke too soon Stephen ;) Don't worry, we all get occasional bad nights and as long as it's a one-off no real harm done, apart from having a lousy day, which makes you realize how you managed to live a 'normal' life before CPAP.
Hoseheads is only one of our many nick-names - the most famous obviously being Darth Vader :D
Had a little look at your website, as I'm partial to jewellery - lovely stuff on there, but like you I need to get in to the land of REM dreaming now.
Sleep well everyone :) with none of this.....Zzzzzzzz (I 'hope') pardon the pun!!
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Hi Fellow Hose heads....
Thank you Kath for your nice comments about my jewellery. I really love creating them.
As you said its was just a one off bad night and I am back to normalish with the CPAP. I am really enjoying feeling so awake and alert in the daytime. I have read that some people just refuse to use the machine. If they could just realise how good it feels the day after I am sure they would change there mind or at least become more acceptable to using it.
As for the nicknames, I did say to my specialist that I was Darth Vader and her replied "ow no thats another pound in the charity box. My specialists name is Stephen Thomas at James Cook Hospital, he is amazing. So helpful and positive and full of enthusiasm for the CPAP machine. I feel very lucky to have him looking after my wellbeing. I hope others have the same experience with there specialist.
Anyway, I have rambled on enough for tonight. Hope all of you get a great nights sleep and a full day of awakeness.
Goodnight
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Great to hear you're back on track Steve. Yes, some people tend to put their machines away in a cupboard, but they soon come out the cupboards after the first heart attack or stroke. So sad :( For a lot of people it's hard getting their treatment going at first, but it's worth it for our health, and like you say, just to feel more awake and alert. Sleep deprivation feels like an illness in itself!
Makes such a difference if you have a good specialist looking after you - things are certainly going your way :)
Good Night!
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Thanks Terry, All back to normal now. It was just a bit crazy how I took it off. Because it was hung up tidy as if I had been awake but I did'nt remember waking and doing such things. My wonderful girlfriend Sue just laughed at me and mentioned that if I would like to tidy the rest of my things up in my sleep she would be very pleased....lol
goodnight
Terry Vella said:stephen, don't worry if it comes off at the start, it's all a process of getting used to it. Just see how you go the next night.
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Love It, ha ha!!
stephen smith said:Thanks Terry, All back to normal now. It was just a bit crazy how I took it off. Because it was hung up tidy as if I had been awake but I did'nt remember waking and doing such things. My wonderful girlfriend Sue just laughed at me and mentioned that if I would like to tidy the rest of my things up in my sleep she would be very pleased....lol
goodnight
Terry Vella said:stephen, don't worry if it comes off at the start, it's all a process of getting used to it. Just see how you go the next night.
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Permalink Reply by Amanda Farley on
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Hello all, great to find this forum and thanks to Kath who left me a message and link to here on Mumsnet. I am newly diagnosed and 2 days into the CPAP treatment - a few teething issues but so far it's fine......I just need a humidifyer!
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Permalink Reply by The SleepGuide Crew on
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That's made my day Amanda - I found you by accident in a google search, so signed up so I could help you. This is a great place for support which we all need from time to time, but especially in the early days. Why on earth people aren't given a humidifier as standard is beyond me. Your clinic should be able to supply you with one though. The other person who'd responded to you on Mumsnet mentioned the hose covers, which you might need to get with the humidifier, but see how you go first. They're not too expensive though. Here's a link to them on the main website http://www.hope2sleep.co.uk/products/28
Are you feeling the benefits of CPAP yet?
Kath
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