Hope2SleepGuide

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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Kath, they were from one of Dr Parks presentations and I think one of his guests as well, it's to do with getting used to the mask etc, I think that figure was over all compliance and over a long period of time. There was a figure where about 50% dropped off fairly quicly and the other 25% over time, they were also US figures so maybe a larger population brings that number down more. I think the knowledge and awareness from people like you and this site of what effect it has on us may help increase the percentage of late. 

I'm so happy to have found this website!  It looks like it's loaded with tons of information!  I'm looking forward to meeting everyone and learning more about CPAP therapy. 

Hi Patricia, and welcome to our forum.  Glad your 1st impression on here and good, and there are some lovely friendly and helpful people keen to assist with any problems we all get from time to time.  Look forward to speaking with you

Welcome, Patricia, I think that is the Pat Higgins I know from another site, actually I know it is from the photos of your beautiful cat, I'm sure you will get even more info from here.

Hi All Members,Goodday my name in Allan Form Down Under, Gunnedah New South Wales Australia, And have been diagnosed with severe OSA. it took years for the doctors to finally do a sleep test & thanks heavens he did.  Pleased I found the site  as help is always welcome. As  I am to start CPAP could any one help with the best machine, A Resmed S9 or the fish and paykel auot. Thanks Cheers Allan

Hi Allan and great to have you on here, and we have several like yourself from 'down under' which is good as with our different time zones there's usually somebody about to help out.

Both the S9 and the Fisher & Paykel are good machines, but if you want access to the results of your sleep there's some free software you can use with the S9, which we'll tell you about later once you've decided.  Terry, also from Oz, will no doubt see this post and be able to advise you too, and perhaps know the best places to get the machines.   He uses the Resmed S9 too.

Welcome Allan, yes I'm from Melbourne and have been on CPAP for nearly two years and love it, mine also took 47 years to be diagnosed so know how you feel. The machines are not really the most importnat part the mask is and you attitude towards CPAP which yours sounds good. I use the Resmed S9 Auto and so does my sister and we both like it but I'm sure the F&P would do the same job. I have two lots of software for the Resmed , one called Sleepyhead and I have just been able to download the official Rescan software for free which I can share, but don't tell Resmed lol. Our system in Australia is different to the other countries, you can lease a machine and mask for 3 months before deciding if you want to buy them and can change them as many times as you want in that time. It is really good for masks because it took me 5 different masks before I got the right one. Let me know where you are at in the process, it is also different if you go private vs public, I go private. The CPAPs are also different, I use an auto machine which adjusts pressures as I need it, some people just use straight CPAP and the pressures do not change. The auto machines are a lot dearer about twice the price at about $2,000. Let me know where your up to and ask any questions, the more knowledge you get the easier it is.  

Tut Tut Terry - I'm telling Resmed That is unless you send me the link

Terry Vella said:

............ I have two lots of software for the Resmed , one called Sleepyhead and I have just been able to download the official Rescan software for free which I can share, but don't tell Resmed lol.......

Thanks Kath & Terry for your reply. Terry after you suggested the Resmed S9 auto I ordered one. I will buy the machine and  will try different mask all up is $2,750  that will include S9 auto with hum, one mask and visits to set up, that will start on Monday 11th with a sleep clinic. ( you  mentioned attitude towards CPAP) well I cant start quick enough & I will do what it takes to get back to a  normal life. I will appreciate your offer with the download for the S9.Cheers Allan. 

There's no stopping you Allan, which is great to hear, and the right positive attitude to start off on.  Yes, there are sometimes a few teething problems at first, but we're here to help you with those.  Take a look at the blog I did on masks as you might find some tips http://www.sleepapnoeablog.com/choosing-a-cpap-bipap-masks-for-slee... to get you started.  Glad you're getting a humidifier as that will help, and especially with your wonderful hot weather that I'm jealous of lol.

Look forward to speaking again, but bed for me now as it's very late here.

No worries Allan, some people go in with a bad attitude towards it especially having to wear a mas for the rest of our lives but there are things much worse like the associated illness's. That price sounds about right can you tell me who you went through? The mask is the next step and by far the most important, let us know which way you go, there are 3 options nasal pillows, nasal masks and full face masks, I use a FFM because I'm a mouth breather, if you did well at the sleep study it's best to try the same one first, there are also all sorts of brands, I use a Resmed Mirage Quattro just to keep the brands the same but you don't have to. When you get all your equipment let us know because there are heaps of tips we can give you that you don't get told.

hi all

stopping by to say hello, recently diagnosed and in to first 3 weeks of treatment, what a difference those first days have made to my life and health --- all i need now is my driving license returned, which as always with any government department is a nightmare

glad to find this site for support and information needed

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Jonathan replied to Jonathan's discussion ResMed AirSense 10 getting noisy
"Just to tidy this up, I finally had an in-person review by my sleep clinic yesterday, who agreed the ResMed AirSense 10 was "wheezy" and replaced the machine."
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Collette rose replied to Collette rose's discussion 1st time and I’ve failed the mask leak test
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Jonathan replied to Collette rose's discussion 1st time and I’ve failed the mask leak test
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Collette rose posted a discussion

1st time and I’ve failed the mask leak test

Hi everyone, today I received my rental kit - prisma smart max, plus a Philips dreamwear mask which I’ve been wearing unconnected to try and get used to it. I just did a mask fit test using a medium mask and got a constant red/orange leak warning…See More
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Collette rose is now a member of Hope2SleepGuide
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John posted a discussion
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Profile IconBill Wright, Nicole Watson, TJ Bennett and 2 more joined Hope2SleepGuide
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John replied to John's discussion evil mask noise
"Ha well it lasted a couple of days but started howling again. But it's a step in the right direction, just needs a bit more work."
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Jonathan replied to John's discussion Has anyone been told root cause of their OSA?
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Jonathan replied to John's discussion evil mask noise
"Good to know you found a solution!"
Oct 24
John replied to John's discussion Has anyone been told root cause of their OSA?
"Did anyone tell you exactly what the anatomical issue is, Jonathan?"
Oct 21
John replied to Jonathan's discussion ResMed AirSense 10 getting noisy
"Can't say I know about this."
Oct 20
John replied to John's discussion evil mask noise
"So I tore some fabric from one of the filters and glued it over the holes - and it worked!It was dead quiet, and the air was still flowing freely.It was quiet all night then after a few hours a bit of whistling until I gave it a wipe.Vast…"
Oct 19
John replied to John's discussion evil mask noise
"Hi Jonathan, well see my nose is blocked a lot, so I mouth breath which really sucks a lot more moisture and makes my mouth dry. So I put humidity on maximum, which makes for condensation at the mask end, which becomes a demonic reed instrument.Now…"
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Jonathan posted a discussion

ResMed AirSense 10 getting noisy

HelloI have an NHS issued ResMed AirSense 10 with heated humidifier.  In the last couple of weeks, it's developed an annoying noise, when I inhale. It bothers me a little and my partner a lot! I sometimes get problems if the water container in the…See More
Oct 16
Jonathan replied to John's discussion evil mask noise
"Hi My first question is why is condensation forming?  I very occasionally get some condensation, may be once a month, but I can quickly run a finger around the inside of the mask, and wipe it away.  I use a nasal mask, with the humidifier…"
Oct 16
John replied to John's discussion What's a good Apnea forum?
"11K+? Ok that's probably where I should look then :-)"
Oct 16
Kath Hope replied to John's discussion What's a good Apnea forum?
"Hi John. Thanks for the compliment as I do my best popping on here, but it's difficult due to us now supporting 25k+ patients at the charity. To be honest, the forum is quiet because most people seem to prefer Facebook and forums aren't as…"
Oct 16
John posted discussions
Oct 16
Jonathan replied to John's discussion Has anyone been told root cause of their OSA?
"There's some information here, but generally it's very common and likely due to our anatomy."
Oct 12

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