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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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.....and so you should be Joanne - this is great progress! For your sore nose, put on some of that CPAP cream (the sample I sent you with your luggage tag order), as this cream can be used with the mask, then dab some on in the morning too. Our local hospital call it the 'magic' cream as it's helped so many people. Hope you're in for another good night :)
Joanne Hollett said:
Thanks for the tip Kath, this is exactly what I did (in fact the hospital also advised it) I managed to keep the mask on until 7:15 a.m, I have a sore nose but I'm ever so proud of myself... :-)
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WOW! 8 STONES! I seem to remember that you were threatened with a gastric band seeing as you couldn't shift your weight before you were on the CPAP treatment. You are doing really well Rosemary :)
Pleased to hear you're still pleased with your Hose Lift too. I think all machines and masks should come with one :) I have two - one's permanently set up on my bed and the other's in my travel bag for nights away. Mind you, I do get a good discount ;)
Rosemary Kemp said:........all I am so much better (eight stone lost now) and I am so grateful to the machine and even to the darth look. (Fashion statement!)
I still think the hose lift is the best invention ever and anyone who hasn't yet tried one should take the plunge. Kath is right, never take the mask off when you go to the loo in the night. Just disconnect the hose and then you don't have to try to readjust the thing when you are still so tired. Rosemary
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How's it going Joanne?
Joanne Hollett said:
Thanks for the tip Kath, this is exactly what I did (in fact the hospital also advised it) I managed to keep the mask on until 7:15 a.m, I have a sore nose but I'm ever so proud of myself... :-)
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Permalink Reply by Joanne Hollett on
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Hi Kath
Thanks for your message. I'm struggling a bit at the moment, I took my "trial" machine back on Monday & boy have I noticed the difference without it! I'm just waiting for the hospital to ring/write to me to tell me when I can go to pick up my own machine - I can't wait! It's amazing I didn't actually believe it was doing any good (or that I was using it properly) but as sure as eggs are eggs I notice the difference without it! Once I get my own machine I'll be back on ebay to see what is available. Thank you for sending my label and my little tube of cream too
x
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Well, that is good news - the fact that you now realise how much good, in such a short time, the CPAP was doing you. It does seem ridiculous to take it away from you though and make you wait for your own :( It might be worth giving them a ring on Monday to see if you can get them to speed it up. I reckon they'll be pleased at your enthusiasm to get back on CPAP ;)
Meanwhile, be kind to yourself whilst you're struggling without it, and keep reminding yourself how much better you're going to feel when on that sleep debt is paid back :)
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Thanks Kath, I think I will do just that. I honestly didn't think it would work but it was only when I fell asleep on the bus (both ways) the first day without using the CPAP the night before that I wondered... what confirmed it was at 3 o'clock in the afternoon when if I could have put my head down on my desk at work I'd have fallen asleep. I'm surprised myself that it worked so quickly, particularly as I only really had 2-3 full nights proper usage, amazing! :-)
Kath Hope said:
Well, that is good news - the fact that you now realise how much good, in such a short time, the CPAP was doing you. It does seem ridiculous to take it away from you though and make you wait for your own :( It might be worth giving them a ring on Monday to see if you can get them to speed it up. I reckon they'll be pleased at your enthusiasm to get back on CPAP ;)
Meanwhile, be kind to yourself whilst you're struggling without it, and keep reminding yourself how much better you're going to feel when on that sleep debt is paid back :)
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Permalink Reply by Graeme Joy on
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Hello from Frome,
My Story,
In 2009 I lost my job as a School Caretaker as it was reported that I had been seen asleep on duty. What!!!!! I demanded, and immediately contacted the union for a case of unfair dismissal, or so I thought.
Guess what, yes you know, I had been dropping of for sometime and it was all of a bit of a joke, the only person that was not in on the joke was me.
Yes I am Large Boned, over Six Foot and a bouncer Doorman in the evenings, and a little bit of a Control Freak, according to the lady of the house.
Lost the case in no time flat, could not understand why so many people would lie, OK had had a strange couple of years feeling tired and a bit touchy but that's cos I work harder than anybody else, right!
EH! perhaps not, apparently the lady of the house had taken to sleeping elsewhere as I was a bit fidgety and she kept elbowing me cos I held my breath, (oh yea right).
Imagine, coming up to the big 60, oversized control freak has to find something called Jobseekers.
They believed everybody else about the sleeping, told to go to TSA as I was not ready to go to work and no one would give you a start if you fall asleep at the drop of a hat.
TSA sent me to the GP, OK men do not go to the GP, right. Then onto some pills for depression ? Anger ?(otherwise called anxiety) and blood pressure, 215 0ver 101 is not normal?
From GP to Sleep Unit, Bristol, Avon.
Told I have OSA and its 28 ???? so need a sleep machine to keep my throat open at night, CRAP (or that's what I thought she said) machine taken home, Biggles now fly's every night.
Seems everybody was right about everything, machine allowed me to sleep, stopped the snoring and the leg kicking, the love of my life moved back in (OK sometimes even now she disappears) brought a new bed, took early retirement started at a Gym found I could actually walk to the shops, reduced the pills when the old ticker could control the blood pressure, smiled a lot more and found fun.
Still tampering with types of mask, tubing, humidifier and nightly routines looking for the right balance and as much information as I can glean to make sure I have the best possible chance at a full life.
More will follow on here as I try different ideas.
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Thanks for some good Sunday evening entertainment Graeme. It's the way you tell it, LOL. Anyway, pleased you're finding life better now you're on the treatment.
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Permalink Reply by Rosemary Kemp on
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Hi Graeme,
Welcome to the "Biggles Brigade" otherwise known as the "Darthader Dozers" (I struggled to find a rhyme for the D!) There's loads of gadgets (like the hose lift) and there's a cream that seems to help the mask seal to my face better without damaging the mask. Kath will supply all of that to you at www.hope2sleep.co.uk
I'm two and a half years into using this cpap crap (sorry - old joke) and my life is definitely back. It isn't exactly easy and as I have lost weight, the mask fit changes and it is difficult but it is worth persevering and life is good again.
I also had no idea that my tiredness was due to this illness and it seemed obvious that if I was working so hard and so big that I would be tired. Not so! You have to have been there though don't you?
Good luck with the whole thing. This is the beginning of the rest of your life!
Rosemary
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Finally having managed to get through to the sleep clinic and speak to a "live" person rather than a tinny automated one, I discovered that I had been forgotten about, plus my case notes had gone missing. I now have my appointment for the 15th to pick up my very own CPAP - I can't wait. :-)
Joanne Hollett said:
Thanks Kath, I think I will do just that. I honestly didn't think it would work but it was only when I fell asleep on the bus (both ways) the first day without using the CPAP the night before that I wondered... what confirmed it was at 3 o'clock in the afternoon when if I could have put my head down on my desk at work I'd have fallen asleep. I'm surprised myself that it worked so quickly, particularly as I only really had 2-3 full nights proper usage, amazing! :-)
Kath Hope said:
Well, that is good news - the fact that you now realise how much good, in such a short time, the CPAP was doing you. It does seem ridiculous to take it away from you though and make you wait for your own :( It might be worth giving them a ring on Monday to see if you can get them to speed it up. I reckon they'll be pleased at your enthusiasm to get back on CPAP ;)
Meanwhile, be kind to yourself whilst you're struggling without it, and keep reminding yourself how much better you're going to feel when on that sleep debt is paid back :)
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Good thing you chased them up Joanne. 7 days to go and I bet you're counting............ You can now look forward to a good summer with more energy :)
Joanne Hollett said:
Finally having managed to get through to the sleep clinic and speak to a "live" person rather than a tinny automated one, I discovered that I had been forgotten about, plus my case notes had gone missing. I now have my appointment for the 15th to pick up my very own CPAP - I can't wait. :-)
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I am counting Kath, and I'm going to visit your shop now and order myself a stand... :-) What is the difference between ordering from you on eBay or from the Hope2Sleep site?
Best wishes
Jo
Kath Hope said:
Good thing you chased them up Joanne. 7 days to go and I bet you're counting............ You can now look forward to a good summer with more energy :)
Joanne Hollett said:
Finally having managed to get through to the sleep clinic and speak to a "live" person rather than a tinny automated one, I discovered that I had been forgotten about, plus my case notes had gone missing. I now have my appointment for the 15th to pick up my very own CPAP - I can't wait. :-)
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