British Snoring & Sleep Apnoea Association

HI, I've just registered here, hoping for some advice. I've recently been diagnosed with Sleep Apnoea and have been given a Res Med machine. I understand this machine works out the best setting for me, then I will get one set for me. My score / rating / whatever was in the 70's, so I'd really like to get it sorted.

I've tried two masks, but I can't get a decent fit. The first one was a smallish thing which covered my mouth & nose, but it kept moving around and leaking. The current one is much larger and has an extension piece which goes onto my forehead. It seems better, but I still get leakage around the bottom of the mask. It goes all the way to my chin, wondering if it's too big for me? I breathe through my mouth a lot, and when the machine kicks in to full pressure it sort of inflates my mouth, causing a leak.

Is this sort of thing normal? It seems to be really tricky to get a good fit with the mask. Should I eventually be able to sleep all night without waking? At the moment I get to sleep and then wake up after about an hour, reset the machine, fiddle with the mask, try again. After two or three goes I've been giving up, because I need to get some sleep!

Any advice / support / wisdom MUCH appreciated

It can be incredibly frustrating at the start of xPAP therapy when you finally have a diagnosis, have a machine and the clinic wave you goodbye only to find that what seemed to be so simple a treatment has unexpected set backs.

It takes many people time to adjust to their new way of live and its equipment so you're not alone!

I've replied to you on another thread about your mask, but would just ask you to persevere. You will start sleeping better and feeling more energizer when awake as soon as you get used to your equipment, settle into a routine and realise that there are LOTS of xPAP users out there but you didn't realise it as you can't see into their bedrooms at night!

Thanks for the reply Alsacienne (and on the other thread), the clinic at Ninewells in Dundee have been fantastic but it really helps to get some advice from fellow sufferers.

Didn't mean to start two threads, I posted once and it didn't appear so I posted again last week, then they both appeared today! Probably best to ignore this thread and use the other one (in case anyone else was planning to respond)

Hi Needsleep and welcome.

Firstly - I was diagnosed 6 months ago and like you had some real problems (harldy sleeping at all for the first two weeks), but I never gave up and took the mask off.

I eventually changed to a mouth and nose mask and after a couple of weeks everything seemd to kick in - the nerve sensors on my face accepted the mask, my muscles around my mouth seemed to stop trying to make odd shapes and by playing with the straps I got it right and the leakages stopped - took time, but oh boy is it worth it. I now average about 7 hours sleep a night and get up feeling refreshed and fantastic (and not sleepy during the day).

Perseverance is the key and you will get there, but it will take time (and we all know how boring and frustrating it is to lay in bed with the mask on and not get off to sleep - I suspect that everyone on this forum has been there).

Good luck - it will eventually happen for you!!

Michael

Hi, thanks for the reply. I initially had a Mirage FX, it was a medium and it came down below my bottom lip but I couldn't get it comfortable. I've now got a Mirage Quattro which looks like this



Certainly qualifies as an Alien Face Hugger my son calls me Darth Vader now!

It's much more comfortable, but I think I've got the wrong size - it's a large, and it comes right down to my chin. Tried washing it, even tried (after a tip from a thread here) shaving before bed time to make sure nothing was in the way of the seal, but it didn't work. I've got another appointment at the clinic next week, and the staff at Ninewells are fantastic. just wanted to get some real-world input to see if I'm being overly fussy or doing it wrong.

thanks Michael, that's really interesting. I get to sleep ok, but I don't stay that way for long - an hour if I'm lucky, often less. I'm actually ok with the mask, it doesn't take me long to get to sleep, and I forget I'm wearing it.

I am much more tired than I was pre-diagnosis, the disturbed sleep from fiddling with the CPAP several times a night is probably a factor, but I think I'm also much more aware of how tired I really am.

Aha! And that's the problem! When we get 'educated' (!) we discover more about ourselves and our sleeping situation. Do persevere - and it should be very soon that you discover that you are getting more restful sleep than before treatment .. and able to do more during the day! Once you get comfy with your apparatus, mask, machine and the whole new way of sleep, you'll find that things should start to improve rapidly. Thank you for posting, and hope that you start to enjoy better sleep very soon.

Hi, I did get measured and I'm sure the nurse said I was a medium, but I have a large mask. Pretty sure she got it out of the right box, so it might just have been someone put the wrong masks in there or something daft.

I have an appointment on Monday for mask no.3 .... glad I'm not paying for them!!

Mine is a medium size ,the seal will sit just under your bottom lip.

Think once you get the right size you will do good with it .

Keep all the spare masks ,parts etc you never know when they will come in handy , my bedside cupboard is like a cpap spares dept !!!

Regards,

I too have cornered the spares market in Alsace! You never know when you're going to need a little element ... so insignificant in the whole mask/hose set up but renders it unusable when that little element is missing!

Update ...

I had to cancel my appointment, so I finally got to see my nurse yesterday. Tried every mask they had (they've got loads!) and concluded that the medium Quattro was the way to go.

With the large one the most I could manage was 45-60 minutes sleep before it leaked - with the medium mask I managed a total of 5.6 hours last night! I woke up a couple of times, but mostly because I was uncomfortable, wasn't having a major leakage problem. Result!

One of the issues I was having was that when the mask leaks the CPAP machine increases the pressure to compensate, to the point where the pressure hits 19-20 and almost blows the mask off my face. Last night I dropped the max pressure to 15 (probably not supposed to fiddle, but my next appointment is a month away so I've got time to experiment), and that seemed to make a difference. I'm thinking I'll keep it like that for a few nights to get used to everything and then try it at 20 again. The AHI last night was either 15 or 18 (didn't have my glasses on!) which is better than my usual 70, but not good enough. I'm guessing that might be down to 15 not being high enough, but it still seems like good progress.

Another question ... I normally sleep with one pillow, but I found last night was more comfortable with two however it does bend my neck up more (obviously) which in turn might compress my throat, causing / increasing Apnoeas maybe?

Apreciate any thoughts on the above, thanks.

Really delighted that you've managed to increase your sleeping time ... as you say with due pride RESULT!! +1!!! WELL DONE!!



OUCH! I understand exactly what you're trying to achieve, but you really must give the mask a chance to work ... I'd suggest you start by refitting it!

You may have it too tight or not tight enough in the right places! Lie down with your machine OFF, with the mask slack. Tighten the bottom pair of straps then the top pair so the mask sits against your face but not pushing down on it. Each of the straps should be reasonably equal in length so pull the them gently away from the centre line of your face - think of your nose as the centre line! - until they are of equal length and then fasten them. Now 'fill up any slack' between your mask and your forehead by turning the dial - I think anticlockwise - until you're comfy. Now turn on your mask and see how it feels ... it should sit against your face a bit like the skirt of a hovercraft on the water.

I too started tinkering with my pressure to try to lower my AHIs ... but you are dropping your pressure settings far too far. You need to work very slowly if you are going down this route ... ie 0.2 drop and wait a week etc. But I really don't recommend it. The max pressure is set for a reason, and I would strongly go back to your clinic because although 18 is a vast improvement on 70, it is still far too high and this shows that the treatment is not correctly set to your needs. GO BACK TO YOUR DOC - but put the pressure back to the amount it was set at by the clinic, then wait at least a week so that the data concerning your pressure and AHIs will be useful to the clinic.

I know it's tempting but this is FAR TOO SOON in your management of the condition to be tinkering with your pressures and settings because you need to get baseline data before you try to alter it. And this data can't be based on just one night's settings. SORRY!!




Pillow comfort is really personal and I don't feel I'd like to comment on it. I find that too high a pillow is uncomfy, but my old pillow feels more like a sack of cement, so it's really a matter of personal taste.

Please do persevere with your treatment ... and go back to the clinic to get your settings reviewed. There may be other 'features' available on your machine that might help you - that have not been used yet - and they might be the way forward rather than tinkering with the actual pressures going through the machine.

Thanks, I should have mentioned that I'm still at the stage where they're working out the settings - the machine is on Autoset so as I understand this it will work out the best settings. Once that's done I will be given a machine set for me at my next appointment.

Re: the AHI - presumably 0 is ideal, but what do people realistically achieve?