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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Hi there - just saying hello - I’ve been using a cpap machine for about 4 years now after so many years of trying to convince an old GP something was wrong. Moved and new GP said - let’s test you for sleep apnoea!

Have moved again so have had to go through the rigmarole registration to a new hospital and a new machine. Now have to return old machine to old hospital - 160 miles away! Not essential travel at the moment. I don’t even know if I can post it back even I could get to a post office (and I wouldn’t want to overload our postal services staff at the moment. 

Trouble I am having at the moment is getting water for the humidifier- not sure what to do.

Hi

I live in London, so we have lots of limescale in the tap water.  Originally I used Purified Water BP from the pharmacy.  Then I switched to using supermarket bottled water - it's food-grade after all.  I got a bit of scale in the humidifier tank, but the occasional swish through with vinegar would clean it out just fine. Now I am lucky enough to have a whole-house water softener, so I have gone back using tap water.

Jml said:

 

Trouble I am having at the moment is getting water for the humidifier- not sure what to do.

 

Morning everyone, just a bit about my condition, my Daughter recognised that I stopped breathing when asleep over a year ago and I reported it to the Dr and after having what seems like every test a body can have, I finally got a machine in March and I was told  I was having 67 apneas an hour. I've had my machine for a month now and it's been good, the first night I slept for 13 hours and my scores have been consistently in the 90's, however the hospital rang and I have been told that my results show that I have 'emergent central sleep apnea', I have been having an average of 2 sleep apneas and 18 central apneas. normally I would go into the sleep clinic but because of the corona virus I will not get an appointment till after this epidemic is over. I would be interested if other members in this group can tell me of their experience of this condition. Cheers

Hi All This is the second time Ive joined.... See below Apr 13, 2017, 7:08 PM

  I had to join again because my posts were Deleted. I hope they will all be put back now? I posted an item that I thought was relevant to all. Please look and comment. Thanks,

Your New Account Information

hope2sleep.co.uk /span>sales@hope2sleep.co.uk>

Apr 13, 2017, 7:08 PM
to me
Greetings from hope2sleep.co.uk.

You have successfully created a new account with which to access the site. This will allow you to add and maintain personal information concerning your account and to review the status of any outstanding orders.

You may Log In (Link removed by admin) to access your account and make changes to either your password or registered e-mail address at any time.

Stuart, you haven't been a member of this forum before until you joined yesterday and there are no previous posts from you on here due to you not existing on the forum so there was nothing available that could have been deleted.  The text you have posted says sales@hope2sleep.co.uk which is our separate Hope2Sleep Charity  website and not related to this forum at all.  That date is when you created an account on our main website www.hope2sleep.co.uk when you probably made a purchase.  

There is a forum link on our main charity website which clearly states the 2 sites are not linked with each other and need a separate password.  Here's the link and why you seem to have got confused https://www.hope2sleep.co.uk/about-our-forum.html

Stuart, I would also recommend you removing your comments  of your account on our charity's website as I've just looked at the 'login' link you've copied and if people click on that then they will have your email address and we never ever expose peoples email addresses as we take seriously GDPR and data privacy!  (EDIT - I have managed to remove the link you'd left in  Stuart so that your email address can't be accessed if anyone were to click the link you'd copied).  As I explained, you've never posted on here before so if you'd like to create a post for the members on here you'll be able to now.

Kath Hope said:

Stuart, you haven't been a member of this forum before until you joined yesterday and there are no previous posts from you on here due to you not existing on the forum so there was nothing available that could have been deleted.  The text you have posted says sales@hope2sleep.co.uk which is our separate Hope2Sleep Charity  website and not related to this forum at all.  That date is when you created an account on our main website www.hope2sleep.co.uk when you probably made a purchase.  

There is a forum link on our main charity website which clearly states the 2 sites are not linked with each other and need a separate password.  Here's the link and why you seem to have got confused https://www.hope2sleep.co.uk/about-our-forum.html

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Latest Activity

Bernice Rios is now a member of Hope2SleepGuide
yesterday
Stuart Adrian Gillespie updated their profile
Wednesday
Stuart Adrian Gillespie posted a photo
Wednesday
Kath Hope replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Stuart, I would also recommend you removing your comments  of your account on our charity's website as I've just looked at the 'login' link you've copied and if people click on that then they will have your email…"
Tuesday
Kath Hope replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Stuart, you haven't been a member of this forum before until you joined yesterday and there are no previous posts from you on here due to you not existing on the forum so there was nothing available that could have been deleted.  The text…"
Tuesday
Stuart Adrian Gillespie replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi All This is the second time Ive joined.... See below Apr 13, 2017, 7:08 PM   I had to join again because my posts were Deleted. I hope they will all be put back now? I posted an item that I thought was relevant to all. Please look and…"
Tuesday
Profile IconOwen Davies and Stuart Adrian Gillespie joined Hope2SleepGuide
Monday
James McCartney is now a member of Hope2SleepGuide
Apr 18
Maureen C updated their profile
Apr 11
Maureen C replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"  Morning everyone, just a bit about my condition, my Daughter recognised that I stopped breathing when asleep over a year ago and I reported it to the Dr and after having what seems like every test a body can have, I finally got a machine over…"
Apr 5
Maureen C replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
Apr 5
Maureen C is now a member of Hope2SleepGuide
Apr 1
Jonathan replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi I live in London, so we have lots of limescale in the tap water.  Originally I used Purified Water BP from the pharmacy.  Then I switched to using supermarket bottled water - it's food-grade after all.  I got a bit of scale in…"
Mar 30
Jml replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi there - just saying hello - I’ve been using a cpap machine for about 4 years now after so many years of trying to convince an old GP something was wrong. Moved and new GP said - let’s test you for sleep apnoea! Have moved again so…"
Mar 30
Steve K-E is now a member of Hope2SleepGuide
Mar 26
Lynn Mattimoe posted a discussion

Cancelled out patient appointment.

HiI had an appnt due 5th May for results of NHS sleep study and to get the machine and mask. Since most appointments are being cancelled I've paid for a private sleep study despite having an NHS one several weeks ago.I'll get the results within 7 to…See More
Mar 24
Haneen Ghabra replied to Haneen Ghabra's discussion helpUARS
"Hi Kath Thanks so much for your reply - I attached some screen shots... Thanks so much !  wow I wonder how the laser surgery could have made things worse! "
Mar 22
Lynn Mattimoe replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi Sophie I'm new to OSA and haven't been supplied with a machine or mask yet but due to the virus my local hospital are canceling all appointments. I hope to experience the machine and mask and I've asked for a copy of my sleep…"
Mar 22
Jonathan replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi Lynn I bought my machine many (many!) years ago.  It's a DeVilbiss Intellipap (also sold as a SleepCube) APAP machine and I am very happy with it although no doubt the technology has moved on.  I am replying to mention that I…"
Mar 22
Lynn Mattimoe replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hello everyone,I've recently  been diagnosed with OSA but not yet prided with the mask or machine. I have found several out patient appnts have been cancelled and hope that mine on the 5th May isn't but won't be surprised if it…"
Mar 22

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