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

Views: 8270

Reply to This

Replies to This Discussion

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..........................

Hi, Thank you for allowing me to join this forum.

I have been on CPAP for the last 7 months now. My consultant diagnosed me with Floppy Larynx Syndrome as part of my Sleep Apnoea. Also my AHI was 77.

So far I'm really happy with the benefit it has provided me as before the Sleep Apnoea was diagnosed it was causing me some serious problems. I was finding that I would fall asleep during my work hours and wake up with no knowledge to me doing so. 

My girlfriend would also notice that on a night I would snore a lot and often stop breathing on numerous occasions. 

It wasn't until my employer at the time sent me a letter of disciplinary action for my problems (unfortunately they only cared about how the company were effected than it's employees well being) that I had to visit my GP who signed me off for depression and referred me to the sleep clinic. 

Now 7 months later I'm in a better job and feel much better from the CPAP machine with the only issue being the red mark it leaves on my face in a morning which I have ordered some mask liners to see if it makes a difference. 

I highly recommend to anyone that is going through the same issues as I did to speak to their doctor.

Hi Simon and welcome to the forum.  It's great to read your story and a prime example of how badly untreated sleep apnoea can affect people.  Sorry to hear you had to go through a tough time, but fab to hear it sounds like you've been able to turn all that negativity into a positive outcome now

Simon Carr said:

Hi, Thank you for allowing me to join this forum.

I have been on CPAP for the last 7 months now. My consultant diagnosed me with Floppy Larynx Syndrome as part of my Sleep Apnoea. Also my AHI was 77.............................................

Hi all, just saying "hello" to fellow sleep apnoea sufferers.  I'm 59 and have been using Nippy ventilators for the last 20 years for my combination apnoea caused by a brain haemorrhage.  I'm treated at Papworth and make 6 monthly visits for an overnight study, though it's 100 miles from where I live.  I've had to change from a Nippy 2 to Nippy 3 now as the former is obsolete, as was my antiquated mask.  The transition is anything but smooth ,,, the machine is OK and much lighter (a huge  bonus!), but alarms with every movement during the night. Every "new" mask I've tried leaks like hell and the answer from the nurses at Papworth (who I've generally got nothing but praise for) is always "tighten the straps", which I get very annoyed by as I wake up with friction burns on my face and nose ... not a pretty sight!  Thank god for this website ... I am now able to tolerate the Resmed Airfit F10 with the help of a mask liner, but still get a few leaks.  I'm thinking of trying the USA's Pad-A-Cheek (available on ebay) and wonder if anyone has tried this?  I'm not sure if it's mainly to help with leakage or for comfort, but would love to know if anyone has tried it.  Take care all x


Hi Amelia.  I know we've spoken before via email The answer isn't to tighten the straps as if they're too tight that will cause leaks.  There's a chance your mask isn't the correct size so maybe they could let you try a different one.  Regarding the liners on the Airfit F10 mask, have you seen on the website that there are specific fitting instructions for the F10 and F20.  If you go to this link you can scroll down and see the images and instructions http://www.hope2sleep.co.uk/silent-night-mask-liners.html  Also make sure you loosely fit the liner as some people pull them a bit tight when attaching the sticky pads.

I've not personally tried the liner you mention and aren't aware of many in the UK who have. 
Amelia Kennedy said:

Hi all, just saying "hello" to fellow sleep apnoea sufferers.  I'm 59 and have been using Nippy ventilators for the last 20 years for my combination apnoea caused by a brain haemorrhage.  I'm treated at Papworth and make 6 monthly visits for an overnight study, though it's 100 miles from where I live.  I've had to change from a Nippy 2 to Nippy 3 now as the former is obsolete, as was my antiquated mask.  The transition is anything but smooth ,,, the machine is OK and much lighter (a huge  bonus!), but alarms with every movement during the night. Every "new" mask I've tried leaks like hell and the answer from the nurses at Papworth (who I've generally got nothing but praise for) is always "tighten the straps", which I get very annoyed by as I wake up with friction burns on my face and nose ... not a pretty sight!  Thank god for this website ... I am now able to tolerate the Resmed Airfit F10 with the help of a mask liner, but still get a few leaks.  I'm thinking of trying the USA's Pad-A-Cheek (available on ebay) and wonder if anyone has tried this?  I'm not sure if it's mainly to help with leakage or for comfort, but would love to know if anyone has tried it.  Take care all x

Hi All,

Just here to introduce myself to this wonderful forum and fellow hoseheads! (As we were very amusingly described back at the beginning of this thread).

I'm Jonny, a 42 year man and I have been on CPAP for around four months now, using a Respironics DreamStation and an Amara View mask. I did start out with the nasal DreamWear mask (and would have loved it if it had been right for me) but we didn’t get on . I think I have definitely noticed health improvements over the last four months, and look forward to these continuing .

I came to a diagnosis of mild to moderate Sleep Apnoea through a diagnosis of a heart condition, so a different journey to most, and if you ever want to know my story just ask. I’m happy to share!

I would like to say how wonderful all my contact has been with Hope2Sleep; to quote a line or two from my review when I hired the SleepView overnight kit: “I feel I have to say how I cannot thank them (and Kath in particular) enough for everything they have done for me…It is funny to think but worth saying that … the Hope2Sleep charity have probably extended my life or, just maybe, saved it.”

Hi Kath, thanks for the reply!

I've tried every size of (possibly) every available mask and they all leak.  Thanks for the link ... I'll take a look.

I may well try one of the pad-a-cheeks as the reviews are pretty good and they're not too expensive on ebay.  If I do go ahead, I'll report back.



Kath Hope said:


Hi Amelia.  I know we've spoken before via email The answer isn't to tighten the straps as if they're too tight that will cause leaks.  There's a chance your mask isn't the correct size so maybe they could let you try a different one.  Regarding the liners on the Airfit F10 mask, have you seen on the website that there are specific fitting instructions for the F10 and F20.  If you go to this link you can scroll down and see the images and instructions http://www.hope2sleep.co.uk/silent-night-mask-liners.html  Also make sure you loosely fit the liner as some people pull them a bit tight when attaching the sticky pads.

I've not personally tried the liner you mention and aren't aware of many in the UK who have. 
Amelia Kennedy said:

Hi all, just saying "hello" to fellow sleep apnoea sufferers.  I'm 59 and have been using Nippy ventilators for the last 20 years for my combination apnoea caused by a brain haemorrhage.  I'm treated at Papworth and make 6 monthly visits for an overnight study, though it's 100 miles from where I live.  I've had to change from a Nippy 2 to Nippy 3 now as the former is obsolete, as was my antiquated mask.  The transition is anything but smooth ,,, the machine is OK and much lighter (a huge  bonus!), but alarms with every movement during the night. Every "new" mask I've tried leaks like hell and the answer from the nurses at Papworth (who I've generally got nothing but praise for) is always "tighten the straps", which I get very annoyed by as I wake up with friction burns on my face and nose ... not a pretty sight!  Thank god for this website ... I am now able to tolerate the Resmed Airfit F10 with the help of a mask liner, but still get a few leaks.  I'm thinking of trying the USA's Pad-A-Cheek (available on ebay) and wonder if anyone has tried this?  I'm not sure if it's mainly to help with leakage or for comfort, but would love to know if anyone has tried it.  Take care all x

It's harder for people like you and I Amelia because you being on the Nippy and me being on the VPAP mean we are on a lot higher pressures than people on CPAP.  It's certainly worth trying anything you see out there.  Those products aren't something we'd supply at the charity though as they would work out expensive due to import duties and shipping from the USA, but anything is worth a try.  Certainly look at the link I shared first though x

Amelia Kennedy said:

Hi Kath, thanks for the reply!

I've tried every size of (possibly) every available mask and they all leak.  Thanks for the link ... I'll take a look.

I may well try one of the pad-a-cheeks as the reviews are pretty good and they're not too expensive on ebay.  If I do go ahead, I'll report back.

Aw, thank you so much Jonny and it truly is a pleasure to be part of the journey to people being signposted to better health and, hopefully, life-changing benefits The DreamWear mask is a fabulous one for nose breathers, but for people like you and I who simply cannot rely on nose breathing, then the Amara View is one of the most highly rated masks for mouth breathers (the FitLife and Hybrid being 2 other good ones and there are others.....).  I've actually just replied to David on a different discussion on this forum http://hope2sleepguide.co.uk/forum/topics/another-benefit-of-bpap and pointed out how cardio issues and sleep apnoea are so much related.  It's a pity all cardio consultants aren't joining the dots!  Contact me directly Jonny at kath@hope2sleep.co.uk as it would be good to get your story on our 'Patient Stories' link http://www.hope2sleep.co.uk/patient-stories.html



JonnyJ said:

Hi All,

Just here to introduce myself to this wonderful forum and fellow hoseheads! (As we were very amusingly described back at the beginning of this thread).

I'm Jonny, a 42 year man and I have been on CPAP for around four months now, using a Respironics DreamStation and an Amara View mask. I did start out with the nasal DreamWear mask (and would have loved it if it had been right for me) but we didn’t get on . I think I have definitely noticed health improvements over the last four months, and look forward to these continuing .

I came to a diagnosis of mild to moderate Sleep Apnoea through a diagnosis of a heart condition, so a different journey to most, and if you ever want to know my story just ask. I’m happy to share!

I would like to say how wonderful all my contact has been with Hope2Sleep; to quote a line or two from my review when I hired the SleepView overnight kit: “I feel I have to say how I cannot thank them (and Kath in particular) enough for everything they have done for me…It is funny to think but worth saying that … the Hope2Sleep charity have probably extended my life or, just maybe, saved it.”

Hi Kath,

My pleasure, and nothing but the truth - what you do is wonderful!

I also tried the Amara Gel mask which was very good in helping with symptoms, but did give me many red marks on my face and a rather painful point on the bridge of my nose - all, obviously, alleviated with the View mask.

I would of course love to be one of your Patient Stories, I will get in touch on your email as suggested.

Sleep well!

JonnyJ.

Reply to Discussion

RSS

Sleep Apnoea Forum

New to the Sleep Apnoea Forum? 

1. Stop by our Sleep Apnoea Welcome Center to introduce yourself to the SleepGuide community.
2. Start a New Topic of Conversation.
3. Post your photos - of yourself, your old CPAP machine, your new CPAP machine, your pet, something about you!

Interested in advertising, have a problem or need to contact us? Click the Report an Issue page.

 

Latest Activity

Andy Falconer updated their profile
6 hours ago
Andy Falconer replied to Andy Falconer's discussion First night with CPAP
"Hi Kath, I'm hoping the next few nights will see me get my AHI down further, but i'm also keen not to put too much pressure on the situation. I have to say i'm very impressed with the Hope2Sleep service so far, with regular updates…"
8 hours ago
Kath Hope replied to Andy Falconer's discussion First night with CPAP
"Hi Andy. That's a good first night and sounding positive already. You may find your AHI comes down over the next few nights. Ideally we're looking for it to be up to 5 which is classed as 'normal.'  Your other goods will be…"
12 hours ago
Andy Falconer posted a discussion

First night with CPAP

So last night was my first with my new CPAP machine (a Philips DreamStation with an Amara style mask), and got on surprisingly well. It took me a while to fall asleep and woke briefly a handful of times in the night but I would say it was very…See More
13 hours ago
Jonathan replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi I was a mouth breather.  I also slept flat on my stomach.  I now sleep on my side, and with a nose-only mask rapidly learned to keep my trap shut at night :)  The airway through my nose has significantly improved, which makes…"
Sunday
Andy Falconer replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Thank you both for the welcome and the advice! I've read a lot about the humidifiers, so I suspect this will be one of the first things I will purchase. I'm a mouth breather, so I'm hoping the hospital will provide a full mask when I…"
Saturday
Jonathan replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi Andy Sorry you've had a rough ride.  How times change.  My sleep study 10 years ago was just a finger pulse thing, and a camera.  I had 86 events per hour.  I guess we're all different, but the first night with my…"
Saturday
Iain Noble replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Andy, Sorry you have had so little support from the NHS. We have an excellent sleep clinic here in Cleveland. You won't have to surrender your driving licence but you will have to tell them if you are diagnosed with sleep apnea. Once you are…"
Saturday
Andy Falconer replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi everyone, I'm Andy and I am currently in the process of being diagnosed with OSA (I suspect), with an appointment at the Royal Stoke Uni Hospital to be fitted for a CPAP machine this coming Monday.   So far it has taken 12 months from…"
Friday
Andy Falconer is now a member of Hope2SleepGuide
Friday
Kath Hope replied to Linda's discussion Do charities take new surplus CPAP masks?
"Hi Linda I just wanted to say thanks for sending us your surplus cushions and headgear.  We've already given out one of the cushions to someone who was struggling with a split cushion.  We really do appreciate this and so did the…"
Dec 3
Sleep2snore replied to Judy Y's discussion Could I have developed Central Sleep Apnoea ?
"Hi Judy, Try drinking a glass if water before going to bed. Dehydration can play a part in the mornings."
Dec 2
Amanda Moore is now a member of Hope2SleepGuide
Nov 30
Judy Y replied to Judy Y's discussion Could I have developed Central Sleep Apnoea ?
"Hi again Kath, Just found how I can see Clear airway/Obstructed airway. So sorry for the previous question. It appears I have approx 80% obstructed. Thanks for your time, best regards"
Nov 28
Judy Y replied to Judy Y's discussion Could I have developed Central Sleep Apnoea ?
"Thanks for your answer Kath. The app I have is Philips Dreamapper . It tells me minimum/maximam/ 90% pressure, My AHI and mask fit, Hours usage. I cant see anything about obstructive or centrals. Is my app out of date, or my machine?"
Nov 28
Kath Hope replied to Judy Y's discussion Could I have developed Central Sleep Apnoea ?
"I don't think those symptoms are specific to central sleep apnoea.  Your app should tell you if those apnoeas are obstructive or  centrals.  It sometimes says 'CA.'  Sometimes when people first wake it takes a…"
Nov 27
Judy Y posted a discussion

Could I have developed Central Sleep Apnoea ?

HiI was diagnosed with severe sleep apnoea Jan 2017 after hiring a device from Hope2sleep. Think I had this problem for around 10 years. I eventually got my cpap machine in August 2017. I have had a few ups and downs, and had my machine adjusted a…See More
Nov 26
Edam replied to Edam's discussion Double inhaling
"Im on Warfarin for life because of leg DVT,s and Warfarin would be stopped 5 days before the operation. This could leave me at risk of another DVT.. Also the last time my Warfarin was stopped I has to self inject Heparin so my belly turned into a…"
Nov 25
Sleep2snore replied to Edam's discussion Double inhaling
"That sounds like a get out for the ENT surgeon. There are a lot of people gone through this op' and even bigger op's to the nose. Maybe he is just not up to it?"
Nov 22
Kath Hope replied to Linda's discussion Do charities take new surplus CPAP masks?
"Hi Linda.  Due to the way some of the manufacturer package their masks, eg multiple sizes of cushions, some clinics just hand the whole pack out to the patients, and then there are others that are more resourceful in that they take out the…"
Nov 22

© 2018   Created by The SleepGuide Crew.   Powered by

Badges  |  Report an Issue  |  Terms of Service