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 Robert, welcome to the forum.

Nothing wrong with silver surfers.

Just use common sense when surfing. 

Hi Robert

Welcome to the forum and don't worry about where you post.  If you do want to start any new discussions, just click on the 'Sleep Apnoea Forum' and  then use the +ADD button for new ones.  The forum can be a bit confusing, and I'd started to write instructions, but abandoned it because this platform is costing us a fair wack so we'll be moving to a new one in the future.

Good luck at your appointment tomorrow, and the most important thing for you to be considering before you go is whether you are a mouth breather or not during sleep so that the clinic supply you with a suitable mask.

You know doubt know that diabetes and sleep apnoea are hugely linked, and many people find that when their sleep apnoea is treated they also get improvements to the diabetes.

ROBERT O'BRIEN said:

thanks Kath for the kind welcome I think I am a nose breather or that seems to be what I am doing whilst falling asleep, but I must change to my mouth when asleep as the wife says I am snoring very loudly of late.  snoring is becoming a bit of a problem lately so I am hoping for a quickish resolution for that problem. otherwise after 46 years of marriage I could end up in the divorce courts lol. when I get the official diagnosis tomorrow I intend to stop driving immediately and let my wife take over i will of course inform my insurance that my wife will be the only driver on a temporary basis i am sure they will want to adjust the premium upwards no doubt. but still not sure when to let DVLA know your views would be appreciated, because my job was an hgv driver but as soon as I informed them of me going onto insulin last year they immediately withdrew my licence hence me retiring earlier than I had intended. but I must admit since being on insulin I am managing my diabetes much better. and finally Kath where is the add button you talked about on the page, is it the add reply coloured blue.

Kath Hope said:

Hi Robert

Welcome to the forum and don't worry about where you post.  If you do want to start any new discussions, just click on the 'Sleep Apnoea Forum' and  then use the +ADD button for new ones.  The forum can be a bit confusing, and I'd started to write instructions, but abandoned it because this platform is costing us a fair wack so we'll be moving to a new one in the future.

Good luck at your appointment tomorrow, and the most important thing for you to be considering before you go is whether you are a mouth breather or not during sleep so that the clinic supply you with a suitable mask.

You know doubt know that diabetes and sleep apnoea are hugely linked, and many people find that when their sleep apnoea is treated they also get improvements to the diabetes.

ROBERT O'BRIEN said:


If you catch this email in time, ask your wife tonight (before the divorce too lol) to see if she can observe you sleeping to check if you're mouth breathing or not, as we don't really know what we're doing in our sleep.  Having said that, some people can train themselves to breathe through their noses if they get put on a nasal mask.  I was wondering about whether you could with you having nasal issues.  I've been on CPAP for years and definitely can't nose breathe!

You're doing the right thing by not driving until you're on good CPAP therapy.  The DVLA has recently changed their rules (Nov 2017) and here's an image to help you and the clinic will advise you tomorrow as well:-

Regarding your last question, here's another image showing how to add a new discussion:-

Good luck tomorrow, and start a new discussion if you need any help after your appointment
ROBERT O'BRIEN said:

thanks Kath for the kind welcome I think I am a nose breather or that seems to be what I am doing whilst falling asleep, but I must change to my mouth when asleep as the wife says I am snoring very loudly of late.  snoring is becoming a bit of a problem lately so I am hoping for a quickish resolution for that problem. otherwise after 46 years of marriage I could end up in the divorce courts lol. when I get the official diagnosis tomorrow I intend to stop driving immediately and let my wife take over i will of course inform my insurance that my wife will be the only driver on a temporary basis i am sure they will want to adjust the premium upwards no doubt. but still not sure when to let DVLA know your views would be appreciated, because my job was an hgv driver but as soon as I informed them of me going onto insulin last year they immediately withdrew my licence hence me retiring earlier than I had intended. but I must admit since being on insulin I am managing my diabetes much better. and finally Kath where is the add button you talked about on the page, is it the add reply coloured blue.

Kath Hope said:

Hi Robert

Welcome to the forum and don't worry about where you post.  If you do want to start any new discussions, just click on the 'Sleep Apnoea Forum' and  then use the +ADD button for new ones.  The forum can be a bit confusing, and I'd started to write instructions, but abandoned it because this platform is costing us a fair wack so we'll be moving to a new one in the future.

Good luck at your appointment tomorrow, and the most important thing for you to be considering before you go is whether you are a mouth breather or not during sleep so that the clinic supply you with a suitable mask.

You know doubt know that diabetes and sleep apnoea are hugely linked, and many people find that when their sleep apnoea is treated they also get improvements to the diabetes.

ROBERT O'BRIEN said:

thanks Kath for the kind welcome I think I am a nose breather or that seems to be what I am doing whilst falling asleep, but I must change to my mouth when asleep as the wife says I am snoring very loudly of late.  snoring is becoming a bit of a problem lately so I am hoping for a quickish resolution for that problem. otherwise after 46 years of marriage I could end up in the divorce courts lol. when I get the official diagnosis tomorrow I intend to stop driving immediately and let my wife take over but still not sure when to let DVLA know your views would be appreciated, because my job was an hgv driver but as soon as I informed them of me going onto insulin last year they immediately withdrew my licence hence me retiring earlier than I had intended. but I must admit since being on insulin I am managing my diabetes much better. and finally Kath where is the add button you talked about on the page.

Kath Hope said:

Hi Robert

Welcome to the forum and don't worry about where you post.  If you do want to start any new discussions, just click on the 'Sleep Apnoea Forum' and  then use the +ADD button for new ones.  The forum can be a bit confusing, and I'd started to write instructions, but abandoned it because this platform is costing us a fair wack so we'll be moving to a new one in the future.

Good luck at your appointment tomorrow, and the most important thing for you to be considering before you go is whether you are a mouth breather or not during sleep so that the clinic supply you with a suitable mask.

You know doubt know that diabetes and sleep apnoea are hugely linked, and many people find that when their sleep apnoea is treated they also get improvements to the diabetes.

ROBERT O'BRIEN said:

hi Kath

 I have my diagnosis today I have an AH I of 60.5 , they have given me a machine to try overnight then they will check the readings tomorrow. then if I get on with the machine tonight they will give me a new one to use tomorrow. my insurance have been ok as my wife is a named driver on my policy there's no extra charge. the hospital are alright with me letting DVLA know when I have compliant readings. so all is good so long as I can master the machine. thanks Bob O'Brien.

Wow!  That's certainly severe sleep apnoea Robert, so it's good it's been picked up in you.  By hook or by crook you'll get on ok with the machine, as your health with vastly improve when you're compliant.  One night isn't long to get into CPAP, but go to this link on our website and read the article for people new to it http://www.hope2sleep.co.uk/desensitisation-tips-for-new-cpap-and-v... and definitely try it before bedtime.

ROBERT O'BRIEN said:

hi Kath

 I have my diagnosis today I have an AH I of 60.5 , they have given me a machine to try overnight then they will check the readings tomorrow. then if I get on with the machine tonight they will give me a new one to use tomorrow. my insurance have been ok as my wife is a named driver on my policy there's no extra charge. the hospital are alright with me letting DVLA know when I have compliant readings. so all is good so long as I can master the machine. thanks Bob O'Brien.

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

I am not familiar with the mask in question, but some masks only need the lightest tension.  If you pull the straps tight they are more likely to leak.  I've certainly never experienced numbness - currently using a Respironics Dreamwear.

Good luck!  Stick with it.

Jonathan.

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

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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