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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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It all depends how quickly each hospital work Dee. Some people hear very quickly, yet some are kept waiting several weeks. Hope you hear something soon, and that you got enough sleep for them to get the evidence they need.
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Good luck Dee.
DeeNJai said:Hi
I received the letter yesterday my appointment is 23 April.
Dee
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Permalink Reply by Susan Harker on
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Hi to everyone, I'm new to the group, but I've had lots of advise, from Kath hope , I had severe sleep apnea, but after 3 months on cpap have improved greatly, I'm learning all the time, and thank you all for the information on this forum, it's helped a lot, I'm still struggling , but looks like everyone does, I'd like to say a real big thank you to Kath, she has the patience of a saint,
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Permalink Reply by DeeNJai on
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welcome to the group Susan, I'm glad that Kath helped you. It's a lot to take in when you are told that you have severe SA and you have to use a machine when you sleep. It a while to get your head around it, the book they sell on here about sleep are great I am reading CPAP and VENILATOR secrets. I wish I had this book before i started using the machine. I have the Kindle reversion which means I can have it read to me if I need too. I am trying to read it on the bus when I am traveling.
Dee
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You're very welcome Susan, and glad you're getting on well now in the first 3 months. You'll still no doubt have more benefits to feel as your body heals from all the years of untreated sleep apnoea - many people find things continue to improve for up to a year once on successful therapy. Do feel free to start up any new discussions for any more help you need Susan.
Dee, glad you're finding the 'CPAP & Ventilators' book of help. Marion, the author, is a member of this forum and she's already written a book specifically for children on CPAP or who have family members on CPAP, as sometimes the children can find it quite frightening. In fact the children's book 'A Monkey, A Mouse and a CPAP Machine' has won Wishing Shelf award.
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Hello all I'm Douglas and thanks Kathy & Mike for adding me to the group.
as a sufferer of O.S.A it was great to find a site that was informative and to read bits and pieces from fellow suffers that is relevant to my own situation that i can put to use so thanks all for your input
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Great to have you Douglas, and yes we're all in this together. Have you been on CPAP long?
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Permalink Reply by Ian Oakham on
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Hi I,m Ian,
I have recently had the test for sleep apnea with the gadget on the finger overnight, that was on 10th March but still waiting for results.
Next door neighbour has told me today he was tested for it a few months ago and as he only stopped breathing 17 times an hour they said its not bad enough to give treatment.
At the moment I am getting 3hrs sleep a night and thats only with a fan blowing cold air across face, no fan = no sleep but I am constantly tired and have to have a sleep every afternoon.
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Welcome to the forum Ian and hope you get your results soon. I'm rather surprised that your neighbour has been told that an AHI of 17 isn't bad enough to treat, as that's moderate sleep apnoea and anything over 5 warrants treatment. I would not be happy with this at all and would be seeking a 2nd opinion!
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Well I would agree with your statement but according to my neighbour, hospital down here wont give any treatment until you stop breathing 50 times an hour which I think is far too much.
Kath Hope said:Welcome to the forum Ian and hope you get your results soon. I'm rather surprised that your neighbour has been told that an AHI of 17 isn't bad enough to treat, as that's moderate sleep apnoea and anything over 5 warrants treatment. I would not be happy with this at all and would be seeking a 2nd opinion!
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You should ask them this yourself Ian, as that doesn't sound right at all. Most people on CPAP don't stop breathing 50 times an hour - anything above 30 is classed as severe. Even mild sleep apnoea with oxygen desaturations can cause damage. Besides, people who only have a mild AHI of say 10 per hour, might actually stop breathing longer than someone with moderate to severe. Things need changing at that clinic if it's true, so it will be interesting what they say when you ask them.
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