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Permalink Reply by Derek Craven on September 1, 2015 at 23:39

Hi Nick, Welcome, You will find lots of info and help here. I have just started my 9th year of cpap, ( I reckon just short of 3000 nights ) took me ages two find this site, you've done well to find it so quickly, when do you start treatment?

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Permalink Reply by Kevin Morgan on December 14, 2015 at 12:31

Hi all,

I’ve visited this forum a few times so it’s about time to register and say hello and a little about me.

I had my diagnosis of Apnoea about a month ago and a fortnight ago have been given a CPAP machine, the first mask lasted about 4 days before a sore nose bridge made me go back to the clinic, the immediately gave me a smaller one that just goes over my mouth and presses against the bottom of my nose.

I am amazed how quickly this treatment has made me feel so much better, I am no longer falling asleep early evenings, and I have so much more energy.  My wife no longer worries about me not breathing and does not have the nudge me to stop the snoring.  I get nudged now ‘cause I’ve turned to face her in my sleep and the mask blows cold air at her.

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Permalink Reply by Kath Hope on December 14, 2015 at 20:52

Good that you've joined us Kevin, and brilliant to hear that after just a fortnight you're already feeling the benefits of you CPAP therapy - even if your wife is colder at night LOL.
Kevin Morgan said:

Hi all,

I’ve visited this forum a few times so it’s about time to register and say hello and a little about me.................

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Permalink Reply by Rikibug on February 12, 2016 at 7:58

Ellos everyone,

My name is Ro, (or you can call me Riki, I don't mind) and I am 28, living in the south of England. I was diagnosed with OSA about 3 years ago, and up til this point, I've not really learnt very much about the condition. I feel a little embarrased about it and frustrated because I've not really had anyone to talk to about it.

All I know really is that at last check I have 19 apneas an hour and if I don't use the machine, which I freely admit that I don't as often as I should because the mask is very uncomfortable, I end up walking around like a Zombie with its brain in backwards. I think cavemen have a more extended vocabulary than me in the mornings. Bed hair and noises, that's about it for me XD

I'm very confused as to what to do next, because I have my checkup appointment today. I've told the nurse so many times that I really don't like the mask she gave me because it hurts but she rather glosses over the fact and packs me back off home to get along with it. Also, Im still waiting to get my SD card back from her, over a year later... I am concerned that because I've admitted I've not been using the machine as much as I should (2-3 times a week rather than every night because I didnt want the pain around my nose the next day and also just general frustration of not getting the help) that they may just relieve me of the machine and let me get on with it alone.

I stumbled across this forum on the serch for alternative masks or advice or, well anything really. It was lovely to find such a helpful forum though, I freely admit I spent a couple of hours lurking and reading. I look forward to talking to you all. (also I apologise for whinging a little.. I'm just anxious because I have my appointment and the nurse scares a me a bit!)

Hope to see you all around,
~Riki x

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Permalink Reply by andy killick on February 12, 2016 at 8:26

Hi RO

There are different masks available and there is no reason they shouldn't trial you with something else.  I have new style mask that cover mouth and nose (I have always had this style) but the new one has a different strap arrangement that seems to take the pressure of the nose area.

I'm also from the south of England (medway) and have not had a problem with the sleep clinic other than getting things re issues which is a cost thing I think.  good luck today.

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Permalink Reply by Kevin Morgan on February 12, 2016 at 8:48

Hi Ro

I am very fortunate that I have had only good experiences with the NHS.  If I were in your position I would print out some face mask options that you think might be good for you, show that to the nurse to demonstrate that you have re-committed. The nurse rightly or wrongly will have a jaded view, it's not good but it's human nature. Be positive about what you want and how they can help you. Do not give out any negative vibes.

 I wish you the best, I recall the zombie feeling. For me the CPAP is the best thing that could have happened. Stick with it.

Kevin  

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Permalink Reply by Deborah Wainwright on February 12, 2016 at 8:51

Hello Ro,

Clinic staff are usually pretty good at ensuring comfort - and compliance is so important, not least because, if you are a driver and know you have OSA, then it could affect your licence if you are not compliant.  This is particularly so now that the EU (and DVLA) rules have changed.  You might want to mention this at the clinic today.  If you've already been then write to them and outline your concerns.  There are a lot of masks on the market and they shouldn't hurt.  Do you mind if I ask which mask you are using?  

The fact you are still attending clinic suggests to me you do want to be compliant with therapy.  You could ask if your clinic runs a patient day, many do, and this will give you chance to meet informally with the staff, meet with others who have OSA and there is often a selection of mask companies present too who will happily provide advice.

Alternatively, the Sleep Apnoea Trust Association UK run an event in Oxford that is very well attended - field experts present and it is aimed at patients.  Their conference is called SATADay (because it is SATA and the event is held on a Saturday! Neat eh?)  http://www.sleep-apnoea-trust.org/sataday-2016-15th-october-2016/

The British Lung Foundation website is a great source of information for patients too - and written in clear understandable language.  The site has some great advice and will help you get your thoughts together for your next conversation with the sleep clinic (or a letter, if you write one)  https://www.blf.org.uk/Page/Obstructive-sleep-apnoea-OSA-health-inf...

There is no cure yet for OSA, and the only clinically recognised and proven therapy is CPAP - mandibular devices are great for those with fewer apnoeas than you are having.  Two key features of OSA are age and the size of the neck.  Age is very much on your side.  While not all OSA sufferers have a large neck, it is a common problem in those who are either overweight (neck collar over 17") or fitness made and muscled-up (like weight-lifters and American Footballers).

I hope all this has been useful, and good luck.

Debi

Rikibug said:

Ellos everyone,

My name is Ro, (or you can call me Riki, I don't mind) and I am 28, living in the south of England. I was diagnosed with OSA about 3 years ago, and up til this point, I've not really learnt very much about the condition. I feel a little embarrased about it and frustrated because I've not really had anyone to talk to about it.

All I know really is that at last check I have 19 apneas an hour and if I don't use the machine, which I freely admit that I don't as often as I should because the mask is very uncomfortable, I end up walking around like a Zombie with its brain in backwards. I think cavemen have a more extended vocabulary than me in the mornings. Bed hair and noises, that's about it for me XD

I'm very confused as to what to do next, because I have my checkup appointment today. I've told the nurse so many times that I really don't like the mask she gave me because it hurts but she rather glosses over the fact and packs me back off home to get along with it. Also, Im still waiting to get my SD card back from her, over a year later... I am concerned that because I've admitted I've not been using the machine as much as I should (2-3 times a week rather than every night because I didnt want the pain around my nose the next day and also just general frustration of not getting the help) that they may just relieve me of the machine and let me get on with it alone.

I stumbled across this forum on the serch for alternative masks or advice or, well anything really. It was lovely to find such a helpful forum though, I freely admit I spent a couple of hours lurking and reading. I look forward to talking to you all. (also I apologise for whinging a little.. I'm just anxious because I have my appointment and the nurse scares a me a bit!)

Hope to see you all around,
~Riki x

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Permalink Reply by Sleep2snore on February 12, 2016 at 9:52

Hi Ro,

No need to be scared of a little nurse (though she might not be so little) as she is there to help.  I don't know how much importance you put on the mask being uncomfortable, but you should get the point across that the mask hurts when you use it.  I don't know which hospital you attend or if they carry a selection of masks or not.  But most Sleep Clinics have a few to choose from, though there are a lot of masks out there.

Masks are the biggest problem people find with CPAP/APAP treatment, no mask fits all and if a mask fits and suits you it might not work with your brother/sister even.  There is a big selection out there and and a few main types, though it does not mean your Sleep Clinic will stock a lot of them.

The main types of mask are:

Full-faced:  These cover your mouth and nose and if you are a mouth breather you will need to use one of these.  There are a few manufacturers and quite a few models out there.  There are usually three main sizes as well, L, M, S.

Nasal:  These masks cover the nose only and come in three sizes and quite a few models.

Nasal Pillows:  These rest on the nostrils and just go inside and no more to form a seal.  They come in many models and three main sizes though some have larger sizes of pillows available.

Hybrid:  These masks are not so common but if you are claustrophobic and a mouth breather may be an alternative to you.  They have a part that fits over the mouth and nasal pillows that come out of the top to supply air to the nose.  They come in the three main sizes and can be used instead of a full-faced mask.

Full cover mask:  These are like a fireman's mask and cover the whole face.  They are not common but some people buy them for use when they have a cold.  Problem with these is they cover the eyes, I have never used one so I don't know what like they are in use.

Cloth mask: These have come out over the past few years, most clinics do not stock these and you would need to buy one privately.  They come in two types, Full-faced and Nasal.  They have mixed reports with some people saying they are very good and others saying they are difficult to get on with.  The problem is getting them to seal properly, once you crack this they are fine.  They come in three sizes and I believe they need replacing more often than hard masks.  They also need to be kept kleen, so you have to wash them every day.

The other problem with masks is that the Sleep Clinics tend to shove a mask onto your face, decide it is the mask you need and send you packing.  At the start of your treatment you have a lack of knowledge about CPAP/APAP treatment (we all do) and you just take what they give you.  They tend to give you information overload as well, so if they did tell you about how you shoulld fit the mask when going to bed it will have escaped you anyway.  They also tend to try a mask on you when you are standing up, the shape of the face changes when you lay down.

When you put you mask on at night, put it on very loosly, lay down, tighten the mask so it is just tight and no more, start the machine and adjust the mask if you get a slight leak.  If you get a large leak, stop the machine and adjust the mask, DO NOT BE TEMPTED TO TIGHTEN THE MASK TO MUCH, just tighten it a little where the leak is and try again.  It might take you a while to sort it out the first time you do this, so don't get frustrated.  The idea of most masks is that the seal pushes out with the air to form a seal between the mask and your skin, {a bit like a hovercraft as someone once put it) so you need to make sure the face and the seal of the mask is clean. Use baby wipes every day to clean the seal (wash every week with dish liquid soap. Do not be tempted to tighten the nose part of the mask to mug=ch as this will cut into the nose, it is very tempting to tighten it as this is where most annoying leaks occur. It you get a leak there, try putting the mask slightly down the nose and sliding it up the nose and then tighten it, but not to tight, some Full-faced masks seal better this way and same for some Nasal masks.  A lot is trial and error.  Lanky Lefty (Jason has a lot of videos on You Tube with lots of tips about fitting masks and he also reviews a lot of masks.  He does not need to use a mask himself, but he does to review them.  He is a Sleep Tech' so he reviews masks so he has a fair idea of the problems users have with them.  Most staff at Hospitals do not use CPAP/APAP machines or masks themselves so have only an idea of the issues some users have with masks etc.  At most clinics they do try to help though, you just have to be a bit more pushy if you like, just to get your point across.  Most clinics are busy as well so sometimes you need to be prepared to wait or they get a quieter period so the Sleep Nurse can give the time to help you better.

So do go back and discuss the mask and any other point you have, they are there to help you and it is their job to help you.  Explain to the Sleep Nurse that you would use the machine every night if you could get a mask that at least fits you better and at best be comfortable to use.

Good luck and do let us know how you get on.

You may need to make an appointment just to see the Sleep Nurse, but at least phone the Sleep Nurse for advice.

They usually ask you to come in if you do, there is the invite to sort it out.  Keep your cool and ask everything you can think of, write it down and do ask.  There is no such thing as a silly question when it comes to CPAP/APAP as it is not natural to have a mask stuck to your face and a machine blowing air at you under pressure.

I don't know what pressure you are on, but the things you need to know is:

What pressure you need (the pressure you are on).

How many events AHI you had before treatment began.

Ask for a card for your machine as without it you will not know how you are improving.

They may only count the hours of use in your clinic, but if you are having problems the consultant might want to read the data on the card to help you, if it is not there the consultant will not be able to tll what is going on when you are asleep.

Good luck and do let us know how you get on.

S2S

Forgot to give you a link to Lanky Lefty's You Tube page.

There are a lot of videos on there so when you get to the bottom of the page click LOAD MORE

https://www.youtube.com/user/TheLankyLefty27/videos

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Permalink Reply by Jonathan on February 12, 2016 at 10:54

Hi Riki,

Using CPAP every night will make you feel like a different person!  The fact that you've found this forum, shows you're keen to find a solution. The nurse is there to help you.  Remember that, and you'll have the confidence to find a solution which works.

My hospital has a very limited choice of mask (two models from Respironics).  Fortunately I can afford to buy my own mask, which has been a bit hit and miss over the years.  The first mask I ever bought was a huge success (no longer in production), but I guess that encouraged me to find what works for me.  You will find suggestions on this forum.  If you mention which mask you have, and what you find wrong with it, you might get some tips.  If you look at www.cpap.com you will find reviews for most masks on the planet :)

Good luck!

Jonathan.

Rikibug said:

Ellos everyone,

My name is Ro, (or you can call me Riki, I don't mind) and I am 28, living in the south of England. I was diagnosed with OSA about 3 years ago, and up til this point, I've not really learnt very much about the condition. I feel a little embarrased about it and frustrated because I've not really had anyone to talk to about it.

All I know really is that at last check I have 19 apneas an hour and if I don't use the machine, which I freely admit that I don't as often as I should because the mask is very uncomfortable, I end up walking around like a Zombie with its brain in backwards. I think cavemen have a more extended vocabulary than me in the mornings. Bed hair and noises, that's about it for me XD

I'm very confused as to what to do next, because I have my checkup appointment today. I've told the nurse so many times that I really don't like the mask she gave me because it hurts but she rather glosses over the fact and packs me back off home to get along with it. Also, Im still waiting to get my SD card back from her, over a year later... I am concerned that because I've admitted I've not been using the machine as much as I should (2-3 times a week rather than every night because I didnt want the pain around my nose the next day and also just general frustration of not getting the help) that they may just relieve me of the machine and let me get on with it alone.

I stumbled across this forum on the serch for alternative masks or advice or, well anything really. It was lovely to find such a helpful forum though, I freely admit I spent a couple of hours lurking and reading. I look forward to talking to you all. (also I apologise for whinging a little.. I'm just anxious because I have my appointment and the nurse scares a me a bit!)

Hope to see you all around,
~Riki x

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Permalink Reply by Kath Hope on February 12, 2016 at 12:23

Hi Ro.  Welcome to the forum and you've had great advice already from some of our fab members.  I agree with what Debi says that you're still attending clinic so you know how important it is to be treated for sleep apnoea, and the fact that you've found the forum too, tells me you're not a quitter :)  Don't be afraid of the nurse, and explain how you do want to be compliant, but the mask is causing discomfort.  There are good masks out there, and what works for one person won't necessarily work so well for another, so it's a case of finding the right one for you!  Ask if you can try a different one that your clinic stocks.  Sleep2Snore mentions some liners and we used to sell those that helped about 40% of the people, but the new Silent Night Liners are so good, that these are helping practically 100% of people - for both discomfort and mask leaks.  You can check out the reviews on the website http://www.hope2sleep.co.uk/products/134 and http://www.hope2sleep.co.uk/products/135  

Never apologise for winging, as it's what the forum is about and many of us have real empathy with you.  I myself would have given up many years ago, if it were not for the fact my own Mum (who wasn't on treatment) had a fatal heart attack, and there was no way sleep apnoea was going to rob my young kids of their Mum.  I know that with you being young you'll feel a bit isolated, but in actual fact you're lucky you have got a diagnosis as I'll guarantee many of your younger friends suffer from sleep apnoea too.  I did a lot of work with the British Lung Foundation with their 3 year campaign and came to the conclusion that actually 1 in 30 children have sleep apnoea - mostly undiagnosed at present.

Get the help you need from your clinic, and we'll support you too of course.  Once you're on good therapy you'll start to feel the daytime benefits, and when that happens you'll be determined to use your CPAP every night.  Good luck!

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Permalink Reply by Rikibug on February 12, 2016 at 13:31

Hey again everyone,

Thankyou for all your kind comments, they helped me to not feel so anxious. I ended up asking my mum to come with me because I'm just socially awkward irl and I'm happy to report that it went okay, a lot better than I thought it would.

I explained about how the mask was hurting and that yes, I had not been using it as often as I should but that I wanted to. The nurse told me that the mask I'd been given before (Quattro FX) had been replaced by another kind - this one has forehead things? (Quattro Air)

So yeah it's not much of a change, but hopefully since the seal thing is softer it will be a bit more forgiving and I wont get so sore.

I spoke to her as well about possibly trying a total face mask but since she only buys Resmed stuff, she cant get it in to try, so if I want to try it myself, I have to buy it - Which is fair point I suppose. it's a lot of money to spend on a mask that might not work, so I can understand.

The funny thing about all this is, taking my mum along has been a bit of an eyeopener for me. She listened to the nurse and suddenly started talking about how my dad had OSA - I never knew because she doesn't like to talk about my dad at all, and said about how I've always been falling asleep randomly ever since I was a child. - I don't remember, I was asleep! XD So that was interesting also I imagine my face was a picture since I just stared and gaped at my mum like a fish!

I will definitely check out the Youtube link and have a look around some more, and from tonight I'm going to make sure I use the machine every night, as much as I can. I'm due to do another Oxometry test again soon, using the machine at the same time and they are sending me a replacement SD card, so that helps.

Thankyou so much again everyone x

It's nice to find people who have the same kind of issues, it helps you not feel quite so alone or that you are over reacting when you get frustrated about masks and being tired all the time.

Hugs, Riki x

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Permalink Reply by Jonathan on February 12, 2016 at 13:55

Hi

That's really great news!  Good idea to take your mum along.

I hope the new mask is better.  If you need something else, you might find something with LESS contact more comfortable.  For example, I've had good results with a Sleepweaver Advance (not the Elan), and a Respironics Dreamwear.  But we're all different.

Good luck!

Jonathan.

Rikibug said:

Hey again everyone,

Thankyou for all your kind comments, they helped me to not feel so anxious. I ended up asking my mum to come with me because I'm just socially awkward irl and I'm happy to report that it went okay, a lot better than I thought it would.

I explained about how the mask was hurting and that yes, I had not been using it as often as I should but that I wanted to. The nurse told me that the mask I'd been given before (Quattro FX) had been replaced by another kind - this one has forehead things? (Quattro Air)

So yeah it's not much of a change, but hopefully since the seal thing is softer it will be a bit more forgiving and I wont get so sore.

I spoke to her as well about possibly trying a total face mask but since she only buys Resmed stuff, she cant get it in to try, so if I want to try it myself, I have to buy it - Which is fair point I suppose. it's a lot of money to spend on a mask that might not work, so I can understand.

The funny thing about all this is, taking my mum along has been a bit of an eyeopener for me. She listened to the nurse and suddenly started talking about how my dad had OSA - I never knew because she doesn't like to talk about my dad at all, and said about how I've always been falling asleep randomly ever since I was a child. - I don't remember, I was asleep! XD So that was interesting also I imagine my face was a picture since I just stared and gaped at my mum like a fish!

I will definitely check out the Youtube link and have a look around some more, and from tonight I'm going to make sure I use the machine every night, as much as I can. I'm due to do another Oxometry test again soon, using the machine at the same time and they are sending me a replacement SD card, so that helps.

Thankyou so much again everyone x

It's nice to find people who have the same kind of issues, it helps you not feel quite so alone or that you are over reacting when you get frustrated about masks and being tired all the time.

Hugs, Riki x

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