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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Welcome Sven and you've been given a lovely machine.  The Simplus mask is also a very good one, but unfortunately getting the 'right' mask is the harder part and many of us have to try several masks until we find the one that suits us.  Numbness isn't something we hear of much.... it's usually discomfort or soreness people complain about.  It could be that you're having to fasten it too tight to prevent leakage.  Occasionally people do end up having to purchase an alternative mask to what their clinics supply, but it's early days yet for you so I would ask your clinic if you can try a different one.  If you do need to purchase in the future and it's a mask that our charity sell, please call us on 0300 102 9711 so we can help advise you, as we hate it when people purchase unsuitable masks as they're not cheap!  The DreamWear Jonathan mentioned in his reply is good for nasal breathers, but with you needing a full face mask perhaps ask if they stock the Amara View as a more minimalistic mask might suit you better (with you mentioning numbness) http://www.hope2sleep.co.uk/amara-view-full-face-minimal-contact-cp...

Sven Mischkies said:

Hi all,

thanks for adding me. I am in my mid 40s and have been diagnosed with light sleep apnea. I think I have had it since about 2010, with the usual symptoms - feel tired waking up, brain fog during the day and often feel too sleepy after work not to go to bed... The NHS gave me a Resmed Airsense 10 on an auto setting to go home and see how it goes. So far I am not using it as much as I should (go to bed with it, wake up after 2-4 hours, take it off). The reason is that the mask is not very comfortable (F&P Simplus size L - the nurse tried a smaller one earlier, but it barely covered my nose. :)) - it feels a bit small (if I move it up all the way to the top of my nose bridge it rests on my lower lip), but the main issue it that my face feels numb under it after wearing it a short time. I searched a bit to find others reporting numbness, but didn't find all that much. 

Is numbness normal? Should I get a bigger mask? If so, which ones are bigger? Would a gel cushion help? Would the NHS provide what I ask for or should I buy it myself? Questions, questions - sorry about that. :D

Hi,

thanks for the responses. I tried to loosen the straps to the point just before it starts leaking, but to no avail. I thought the Amara View would be the worst mask for me, because it sits right there where I get the numbness from the Simplus. 

When I was at the RBH to pick up the Airsense very little time was spend on choosing the mask. The nurse originally gave me one sizes S or M, and L only after staring at me for a while and noticing that the little hing barely covered my nose. No other masks were tried.

So, this week I called them back and ask for an appointment to change the mask, and was told to just come in at a certain time because that was when mast swapping consultations were done.

I went there today, only to discover that they meant to replace an old mask with a new one, not trying to fit something altogether different for which you would need a proper appointment... Oops.

Thankfully I was taken care off anyway :) and we went through a plethora of masks (with repeated mentions of my 'long face' even after I commented that my mum is also still complaining about the size of my head...), including the Amara View (which was the least comfortable), but found no fitting full face mask. I mentioned the total face mask, but she said that that one would not be available. So, as I mostly breathe through the nose we tried on nasal masks - with the same result, everything was too small.

So, that didn't go well at all - until at the very end she came with a pillow mask, which seems to be quite comfortable, so I will try that one and a chin strap over the weekend. I'll report back next week. :)  

Not all the clinics like supplying the FitLife (total face) mask as it's the most expensive one.  It's been a favourite one of mine for a long time, and in the early days I had to purchase it myself, but my clinic does now.  Hope things are going well with the pillows mask and chin strap.

Sven Mischkies said:

Hi,

thanks for the responses. I tried to loosen the straps to the point just before it starts leaking, but to no avail. I thought the Amara View would be the worst mask for me, because it sits right there where I get the numbness from the Simplus..........................

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Latest Activity

Edam updated their profile
yesterday
N replied to Bernadette Plunkett's discussion Advice on ordering a CPAP machine from overseas
"Very interesting conversation; many thanks. Philips says (website) the machines are expected to last about 5 years. We’ll see.  I think that if you travel a lot and/or for extended periods you need something very portable. if you are away…"
Tuesday
Sleep2snore replied to Bernadette Plunkett's discussion Advice on ordering a CPAP machine from overseas
"It is the manufactures own rules, but they will not look at a machine bought overseas under warranty. If you ask ResMed, they will only say that they will not honer any warranty if you buy a machine abroad. They know that they can't stop you…"
Monday
N replied to Bernadette Plunkett's discussion Advice on ordering a CPAP machine from overseas
"Hello, Yes, it is a very old fashioned way of doing business. Apple used to do the same years ago until they realised that people travel and use the Internet, and now all their products cost more or less the same globally. Furthermore, as we still…"
Monday
Kath Hope replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Not all the clinics like supplying the FitLife (total face) mask as it's the most expensive one.  It's been a favourite one of mine for a long time, and in the early days I had to purchase it myself, but my clinic does now.  Hope…"
Sunday
Kath Hope replied to Chris Vesey's discussion Dvla / hospital
"Yes it's annoying Chris.  However, due to the fact that the DVLA themselves don't appear to know how to handle this all correctly (it depends who you reach at the time) then it's advisable not to email or ring them, but to rely…"
Sunday
Kath Hope replied to Bernadette Plunkett's discussion Advice on ordering a CPAP machine from overseas
"Welcome to the forum N.  Sorry to hear about your experience, and in actual fact the USA Store have broken the rules sending the machine from the USA as they're not supposed to.  Although they can be cheaper, it can work out more…"
Sunday
N replied to Bernadette Plunkett's discussion Advice on ordering a CPAP machine from overseas
"Hello, I ordered a DreamStation Go Auto CPAP machine from the CPAP Shop in the US - as advised on the Philips US website.The machine is not available in the UK and I wanted it for travelling - I have a DreamStation with humidifier from the NHS but…"
Sunday
N replied to John Wilkinson's discussion Dreamstation humidifier heated hose and simplus 'mask type' settings
"Hi John, I had the same problem until I disvovered that the setting for the heating was “adaptive” (works following a piece of software that switches the humidifier on/off during the night), as opposed to “fixed”. I changed…"
Sunday
N replied to Edam's discussion Amara view mask
"Hi Edam, There are several reviews on YouTube about the Amara; the results are very  mixed. I tried it and I found that it leaked too much; a real pity as the idea is very good. I then tried the ResMed F-20 (full-face, no forehead support) and…"
Sunday
N is now a member of Hope2SleepGuide
Sunday
Chris Vesey posted a discussion

Dvla / hospital

Hi,Wrote to the dvla for the correct form, phoned them when nothing arrived, form came a week later. Filled it out and sent it back 3 weeks ago, a week ago I had a letter a week ago saying they had written to the cosultant, resmed agreed to send a…See More
Sunday
Sven Mischkies replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi, thanks for the responses. I tried to loosen the straps to the point just before it starts leaking, but to no avail. I thought the Amara View would be the worst mask for me, because it sits right there where I get the numbness from the…"
Feb 16
Edam replied to Edam's discussion Amara view mask
"Respironics have confirmed that the slot is 2.5cm on the small and mediom cushions and 3 cm on the large"
Feb 15
Edam replied to Edam's discussion Amara view mask
Feb 15
Edam posted discussions
Feb 14
Edam replied to Edam's discussion Amara view mask
"Thanks for that. After looking through 7 pages of reviews I found somebody who had measured the slot at 1in by 0.5 in at its shortest.  As my nose is about 1.25 in wide any movement would cause a major leak. I wish Respironics would publish a…"
Feb 14
Sleep2snore replied to Edam's discussion Amara view mask
"There is some information here https://www.cpap.com/blog/amara-view-respironics/ scan down the page to see helpful comments and a guide."
Feb 14
grumpycamel updated their profile
Feb 13
grumpycamel replied to John Wilkinson's discussion Dreamstation humidifier heated hose and simplus 'mask type' settings
"Hi John, It may help if you switch on the preheat function on the DreamStation main menu before you go to bed. It warms up the humidifier for 30 minutes and switches itself off to get things warmed up. I tend to have the hose and humidifier on 5…"
Feb 13

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