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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 Rosemary Kemp on
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Hi Daz, Welcome to the forum from me as well! These machines are prescription only and it is really hard to get second hand machines. I remember when there were a few on ebay and suddenly all the adverts disappeared because they aren't allowed to sell them.
The hospitals sometimes let you buy your own but I'd be patient at this point. Perhaps you can get a chin strap to see you over the period of waiting? Are they threatening to remove your driving licence? I had to wait a month for my machine and DVLA were about to remove my licence. Very scary time altogether.
As Kath says, keep nagging your hospital. You may be able to get them to lend you one while you wait for your own.
Best of luck. This will give you a whole new lease of life but it isn't an easy journey.
Wishing you loads of success, Rosemary
Darryl Milligan said:Hi, I am Daz. I am 45, and have just been diagnosed with OSA, with 36 dips/hour. Apparently I have probably had it since my teens going by the signs (even the neighbours have complained about my snoring). I have never really been able to sleep, always blaming it on my stressful job (registered care manager). Now that they have put it down to something, I make it my duty to learn everything I can about it. I have been told I have a 6 week wait now for a CPAP machine... That is driving me insane, like having a winning scratch card, and nobody will cash it. Is it totally impossible to get second hand machines to fill in the gap?
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Permalink Reply by Darryl Milligan on
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I have had it out with my consultant, I now get my machine a week on Monday. He said to inform DVLA then and all should be ok. What is this about chin straps?
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Permalink Reply by Kath Hope on
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That's good news :) Don't worry about chin straps at the moment - wait until you get your mask. Some people use chin straps if they are mouth breathing and have a nasal mask, but if you know you breathe through your mouth when asleep then it's best to get a full face mask.
The bad news is that you shouldn't be driving until you're on successful treatment, as if you had an accident whilst knowing you have sleep apnoea which isn't being treated, then the consequences would be very bad. Check out this discussion http://hope2sleepguide.co.uk/forum/topics/more-lives-lost-through?i... and if you also do a search for 'DVLA' on here there are other discussions to help.
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Brilliant news that your machine will be with you so soon. No need to think about chin straps (like Kath says) if the machine is so imminent. It was only because you thought you might have to wait for ages to get the machine.
Good luck to you.
Rosemary
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Permalink Reply by Jan Johnson on
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Just want to give a big public thank you to you Kath for all the helpful advice you have given to me since I first contacted you after finding your wonderful web site.
Lady Jan Johnson
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It's true Mary! There is a whole new language once you embark upon a life with PAP isn't there? Who had heard of "hose huggies" for example or "rain out" let alone experienced the pleasure of being doused with cold water through the aparatus.
Good job we can smile as well. Lots of things we discuss are very normal to us now but for newcomers, they need not be frightened. It's amazing how you get used to the machine and a mask ... eventually finding the right one and sharing experiences like this really does help.
Have a happy New Year Mary.
Rosemary
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Permalink Reply by Donna Jules-vialva on
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Hi there glad to have found this forum wish I had found it when I first needed CPAP ! But I am here now and hope tp make friends.
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Nice to meet you Donna. There are some good posts on this site and questions are answered for folk. Take a browse and see if you can find Rock's video on the importance of exercise. Some of the statistics are surprising.
Best wishes,
Rosemary
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Permalink Reply by Roz B on
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hi all, i joined yesterday after an awful first night using CPAP. i am so relieved to have found some 'normal' people that understand what i'm going through.
Im pleasd to say after checkng the settings on my machine i had a much better 2nd night :). i think the setting for my mask wasn't the right one and it was giving me too much pressure.
i slept for 4.5 hrs then another 2 after a trip to the bathroom. my head feels a bit thick now though, but i am hopeful that this is all going to work for me.
Thanks to Kath for coming to my rescue last night by email…. i'm much calmer today and not so panic'y
looking forward to getting to know you all.
roz xx
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Permalink Reply by gina on
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HI Roz
ive been on cpap for about 6 weeks now and still a long way to go yet but some days you may find it hard other days easier with low days and not so low days but having found here it does help and lots of old hands to give you lots of support and tips cos thay know it can be a stuggle but not always .i do wish you a good nights sleep and if you have a bad one try and forget about it the following night you will be fine with kaths help .
ginaxx
Roz B said:hi all, i joined yesterday after an awful first night using CPAP. i am so relieved to have found some 'normal' people that understand what i'm going through.
Im pleasd to say after checkng the settings on my machine i had a much better 2nd night :). i think the setting for my mask wasn't the right one and it was giving me too much pressure.
i slept for 4.5 hrs then another 2 after a trip to the bathroom. my head feels a bit thick now though, but i am hopeful that this is all going to work for me.
Thanks to Kath for coming to my rescue last night by email…. i'm much calmer today and not so panic'y
looking forward to getting to know you all.
roz xx
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Hi Roz B.
So sorry you had a rotten night with the cpap stuff. It really does take time to get used to it all and you are really not alone. Three years in and I sometimes get it all wrong even now but once you are further into the exericse you will start to see the longer term picture. When all you have are a few nights experience, you see a very different picture to the one for example that I now see. You will hopefully be more like me long term and will start to feel totally new as if life has been given back to you.
Some people give up very quickly and it isn't totally surprising because it is a minefiled. Masks that don't seem to fit properly; "rain out" where water comes down the hose; uncomfortable equipment and noise when we have not got a good seal between the mask and the face to name but a few difficulties! If these people were to have stuck to it they could have also reached the new lease of life that lots of us have been given and also avoided the other health problems associated with the condition or had exiting health problems go into remission or certainly improve loads.
I also thank Kath for being there for us all. This site is a Godsend. It is good to have other straightforward people around who know what this feels like! Good luck to you and I hope things have already improved loads.
Rosemary
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