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

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

At the moment I have a problem with Social Services, because they believe my sleep apnea effects my ability to care for my two children. (Who are aged 3 and 4) I have been using a Dream Ware Mask, and a machine that records my sleeping on an SD card. My specialist have no major concerns and have told me I'm fine to drive. I cant see their concern?  They say I mentoned i have nodded off a few times which is absolutely true. But thats not unusual for a busy parent thats been running around all day...So now Im told they have called a section 47 meeting. About my ability to care for my two children. Has anyone else had this?

They seem to think that  because I have sleep apnea I'm not fit to be a parent. They seem to think that makes me negligent...I'm not, I find their comments insulting and unfair I cook, I teach I pick my wife up from work. I play with my children and the school say hey are well dressed and very happy. So why the persecution?.... I dont get it now I'm being told health proffesionals are flagging up concerns about my health so I've asked who? They just say "Proffesionals". I don't see how this helps me to respond to anything? If I ask about anything they hang up! This is now causing me great anxiety. Now I have a letter that tells me They have instructed a neightbout to call the Police if I go out without my children? What if my wife is with them? Is this a criminal offence to go out now by myself? Has any one else experienced this? The law Society have told me its not a legal matter?   Suggestions anyone? (Oh btw I'm not paranoid.) Comments please.

At the moment I have a problem with Social Services, because they believe my sleep apnea effects my ability to care for my two children. (Who are aged 3 and 4) I have been using a Dream Ware Mask, and a machine that records my sleeping on an SD card. My specialist have no major concerns and have told me I'm fine to drive. I cant see their concern?  They say I mentoned i have nodded off a few times which is absolutely true. But thats not unusual for a busy parent thats been running around all day...So now Im told they have called a section 47 meeting. About my ability to care for my two children. Has anyone else had this?

They seem to think that  because I have sleep apnea I'm not fit to be a parent. They seem to think that makes me negligent...I'm not, I find their comments insulting and unfair I cook, I teach I pick my wife up from work. I play with my children and the school say hey are well dressed and very happy. So why the persecution?.... I dont get it now I'm being told health proffesionals are flagging up concerns about my health so I've asked who? They just say "Proffesionals". I don't see how this helps me to respond to anything? If I ask about anything they hang up! This is now causing me great anxiety. Now I have a letter that tells me They have instructed a neightbout to call the Police if I go out without my children? What if my wife is with them? Is this a criminal offence to go out now by myself? Has any one else experienced this? The law Society have told me its not a legal matter?   Suggestions anyone? (Oh btw I'm not paranoid.) Comments please.

They have now suggested my wife should give up her well paid job and  becomes sole  carer for my children. With many jobs becoming scarce, I don't consider this to be an option. Am I being unreasonable?

Hi Stuart.  Reading what you say, you had sleep apnoea, you are being treated, and therefore you are now symptom-free.  Perhaps your social worker doesn't know what sleep apnoea is, and is simply covering their own backside.  Do you have a GP who can support you?  I hope you get a quick resolution.  Jonathan.

Hi everyone - lovely to e-meet you! 

I'm hoping you can help me. I took a private sleep test with Philips a few months back before the lockdown which shows I have severe sleep apnea. Unfortunately I haven't been able to get into a proper sleep clinic due to the Covid-19 situation but I desperately need to get this treated so I can get a decent night's sleep. 

I'm willing to buy a mask and machine myself, but does anyone know the best way of doing this without testing? I haven't found anywhere that provides testing of this equipment so would just have to buy on faith....

Any help, advice or sharing of experiences would be much appreciated. 

Kind regards, Leoni 

Hi Leoni

Sorry there was a delay in approving you onto the forum as we had a glitch and notifications weren't coming through.  If you had a private sleep test with Philips then you will have got an official diagnosis - probably from Dr Dawson.  If this is the case then you can purchase an auto machine from us at the charity.   If you'd like some help with this being new to you then give us a call tomorrow 0300 102 9711 or you can email support@hope2sleep.co.uk

Leoni Atkins said:

Hi everyone - lovely to e-meet you! 

I'm hoping you can help me. I took a private sleep test with Philips a few months back before the lockdown which shows I have severe sleep apnea. Unfortunately I haven't been able to get into a proper sleep clinic due to the Covid-19 situation but I desperately need to get this treated so I can get a decent night's sleep. 

I'm willing to buy a mask and machine myself, but does anyone know the best way of doing this without testing? I haven't found anywhere that provides testing of this equipment so would just have to buy on faith....

Any help, advice or sharing of experiences would be much appreciated. 

Kind regards, Leoni 

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Kath Hope replied to Glenys Everest's discussion Spare unused nasal pillows
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Spare unused nasal pillows

Is there a swap section on here, please?I have some Large Nuance nasal pillows, still in their package, that I won't be using, and wondered if there is anyone out there with some mediums that they don't need and could swap with me please?Our clinic…See More
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Kath Hope replied to David's discussion Where do you got your distilled water for humidifier
"Sorry David as missed your question. To be fair all the manufacturers say to use distilled water in the manual, but as you've discovered it's hard to get it here. I live in a very hard water area so I do purchase it but it's not…"
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Jonathan replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Welcome.  I was diagnosed in 2009 at 80+ events per hour, but was discharged by the sleep clinic many years ago, on the basis that I was "self managing".  I bought an APAP machine, which allows me to see how well I am doing, and…"
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