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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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LOL. See you there......
Joanne Hollett said:
I am counting Kath, and I'm going to visit your shop now and order myself a stand... :-)
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Permalink Reply by Cathy Smith on
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Hi,
My name is Cathy, I am a Liverpudlian living in California. I recently joined the sleep forum and am enjoying reading your blogs. My sister Joanne, who lives on your side of the pond, was recently diagnosed with apnea and referred me to your wonderful site.
I was diagnosed with severe central sleep apnea about 6 years ago. I have tried to use the BiPAP twice before with no success. This is my third try and I am determined to make it work. I seem to get less sleep using the BiPAP than with it due to waking up with mask leaks. I toss and turn like a fish out of water and the seal leaks when I turn on my side. I usually cannot go back to sleep after fixing the leak. I thought my latest mask, a Mirage FX might be the answer to my prayers, but no such luck. The mask is whisper quiet, incredibly light and extremely comfortable to wear, but it seems to leak just like the nasal pillows. Does anyone know of a mask designed for side sleeping mouth breathers?
Cheers.
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Hi Cathy. It's amazing having 2 sisters from different parts of the world joined on here :) Incidentally, have you been tried on an ASV (Adaptive Servo Ventilator) which are supposed to be better at treating 'central' sleep apnoea? As for full face masks, well it's the usual case of what suits one doesn't always suit another. My favourites are the Innomed Hybrid + Respironics Fit Life (in fact there's currently an ad at the top of this page you can look at for that one). Some people say the Resmed Quattro FX is good, but I can't vouch for it personally as I've not tried it.
Cathy Smith said:
Hi,
My name is Cathy, I am a Liverpudlian living in California. I recently joined the sleep forum and am enjoying reading your blogs. My sister Joanne, who lives on your side of the pond, was recently diagnosed with apnea and referred me to your wonderful site.
I was diagnosed with severe central sleep apnea about 6 years ago. I have tried to use the BiPAP twice before with no success. This is my third try and I am determined to make it work. I seem to get less sleep using the BiPAP than with it due to waking up with mask leaks. I toss and turn like a fish out of water and the seal leaks when I turn on my side. I usually cannot go back to sleep after fixing the leak. I thought my latest mask, a Mirage FX might be the answer to my prayers, but no such luck. The mask is whisper quiet, incredibly light and extremely comfortable to wear, but it seems to leak just like the nasal pillows. Does anyone know of a mask designed for side sleeping mouth breathers?
Cheers.
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Permalink Reply by paula fry on
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Hello fellow sleep apnoea sufferers. I was diagnosed with SA earlier this year and have been using a CPAP machine ever since. My husband is supportive, and my family and friends also, although having 'spoken' to Kath already online, I found it so wonderful to have contact with someone who actually understands the problems of CPAP, and cares so much about helping others. I'm not exactly sure how these forums work, but no doubt I'll pick it up as I go along. I am a little shy, so won't use my real name, but wish you all a 'good night's sleep. Paulafry
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Hi Paulafry.
Welcome to the forum and hope that you get help whenever you need it. People share their experiences and sometimes it is good to know that you aren't alone with stuff like leaking masks and "rain out". (It's like learning a completely new language!)
The companies that sell the gear look at the site too so it is hopefully helpful for them to see what the problems are and offer us a better service. We are definitley lucky to have someone like Kath on our side aren't we? Bye for now and hope you had a good night last night.
Rosemary
pauline yeomans said:Hello fellow sleep apnoea sufferers. I was diagnosed with SA earlier this year and have been using a CPAP machine ever since. My husband is supportive, and my family and friends also, although having 'spoken' to Kath already online, I found it so wonderful to have contact with someone who actually understands the problems of CPAP, and cares so much about helping others. I'm not exactly sure how these forums work, but no doubt I'll pick it up as I go along. I am a little shy, so won't use my real name, but wish you all a 'good night's sleep. Paulafry
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Hello Rosemary, thank you for your warm welcome. I completely agree with you regarding how lucky we all are to have Kath with us in this. The difference between people we know who are supportive, and those that know from personal experience what it's actually like to use the masks and machines is enormous. Well, so far, I've managed to correct my email address that I'd mis-typed and alter my profile, now I just need to learn how to post replies...not sure if I've done this correctly, so this is a bit of a trial run. So, 'bye for now and 'sleep well'. Paula
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All done correctly as you will see. I'm also convinced that I'll get it wrong (and often do!)
I'm taking my old cpap machine away with me this weekend as I have it all packed up. It will be interesting to see if I still remember how to get that right! I've become very used to my new apap machine. It will be good to get a comparison.
Best wishes,
Rosemary
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Hi all!
Just saying hello. Diagnosed 6 weeks ago and so far really feeling the benefits of treatment. A few teething troubles but the effort is well worth the end result:-)
All the best and look forward to talking to you all
Jude
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Hi Jude (not quite the same as the song!)
I'm so pleased that you have already started to feel the benefit of the treatment. It isn't always plain sailing but it does make an enormous difference to us doesn't it? As you get to try the comfort products and other bits and pieces over time, you will find that the condition is quite manageable. One really nice thing to try is to put something like a reed diffuser near to the air vent on the machine so you get lovely fragrance through the tubing and mask.
Wishing you well on this strange adventure!
Rosemary
Jude Olds said:Hi all!
Just saying hello. Diagnosed 6 weeks ago and so far really feeling the benefits of treatment. A few teething troubles but the effort is well worth the end result:-)
All the best and look forward to talking to you all
Jude
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Hi Rosemay and well done for swerving the "hey Jude"!:-)
I will try your tip with the reed diffuser, that had never crossed my mind but sounds like a great idea.
All the best
Jude
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Permalink Reply by Darryl Milligan on
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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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Hi Daz and welcome! So you're just at the beginning of your journey......and 6 weeks feels like a long time to wait now you've got your diagnosis - the first part of your journey. Some clinics are quicker than this these days. Won't hurt to ring to say you'll accept a cancellation at short notice as you're desperate to enjoy a healthier christmas ;) Now you're in the system it would be best to keep in the system and be titrated for the correct pressures. Keep nagging!
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