Last Night I gave up

[OldCrow]

6 am- no sleep at all; hours spent wrestling trying to stop leaks and not daring to move. Seems I can either have leaks and sore eyes or pain from developing pressure sores around my nose and a "monkey-face" line around my mouth in the morning. I really have tried to be positive and have tried all sorts of homebrew remedies to block the leaks, mostly around the nose.
Now I'm an olympic-class snorer and they say I have apnea seriously, although my blood oxygen was over 96% but I'm now in the situation of dreading going to bed and the thought of having to put up with this for ever fills me with horror; my anxiety rate is awful.
I feel very guilty because I've obviously been given very expensive kit but I've never had more than 4 hours continuously from it and I'm stiff from not being able to move. I can no longer go to bed and relax- it's torment! This is supposed to do me good, not presently it isn't!
So! What to do. I'll contact the hospital Monday to see if they have any alternatives but I know they think the Mirage Quattro is the best they have - well not for me it isn't- and I have tried! If I'm going to go on with CPAP I need a mask that's comfortable and leak-free. I'd like to try one of the mouth only designs even if I have to pay. Can't go on as I am though!

[Biggles]

Please, don't give up OldCrow

I'm sure there must be a mask that will suit you. Perhaps you could try a nasal mask? I was told at the outset that as I was a mouth breather I needed a full face mask, but, there being none available (at that moment in time) and I was impatient I asked if I could try a nasal mask. Over 5 years on I'm still with a nasal mask. My favourite for a few years has been the Respironics Comfort Curve which sits below the nostrils. Yes, sometimes if I'm a bit restless I will get some leaks but not that many. What I have found is that my mouth stays closed and I can only assume this is because I'm now breathing through my nose.

Please don't give up, the benefits of CPAP are very good. I'm sure there is a mask out there for you somewhere; I'm amazed at the huge choice.

Bonne Courage

[Tricia]

Research and stand your ground

I think that I would research all the different styles of mask available and tell the hospital which one looks as if it would suit your nose the best. Insist that you want to carry on with the CPAP and it's only the leaking mask (which won't be helping with the air-flow anyway) that's bothering you.
I've had various "discussions" with the NHS (for different ailments) and have found that if you stand your ground while emphasising that you do want the treatment, they are generally helpful.

Or maybe plastic surgery on your nose is the way to go!

[silvercarper]

If you are prepared to pay for a mask I believe that Resmed do a mask fitting service. It could be worth contacting them as according to their website they have a office in the midlands.
In my case my hospital did not supply full face masks and I had to buy my own, from Intus, even for a CPAP trial. Luckily the first mask I bought fitted me perfectly but it could have proved to be expensive if it had not worked

[OldCrow]

Thanks for the support

Yeah, I'm sure I need CPAP but yet to feel any benefit as I've had four weeks of problems with fit and no more than four hours per night decent sleep, so you'll see the state I'm in presently. No way I can continue with the present one as it's deeply unpleasant and indeed painful but the actual blowing and dry mouth etc I don't have a problem with. I do need to get onto my NHS dept and see what they can offer - last time it was some sticky tape - . Current problem is I've developed a phobia about it all and dread going to bed; in fact I need little blue pills to keep me sane!
There must be a mask that works but they're not cheap and I can't afford to make mistakes. Nose masks, I'm not sure about - I've had sinus problems and feel I'm choking if I breathe nasally but never researched how a nasal system would feel; certainly I'd like something that would allow me to read or move about a bit as one problem with the current is that if you use a barrier, you get something pressing on your eyes.
Resmed? Anybody got details of their website - I seem to get American details and it would certainly be good to be able to try kit before buying.

[Tigers Fan]

It ain't funny!

Hi OldCrow

Try Resmed UK and Respironics UK in Google.

I like Resmed masks - purely because they work for me and look the part. However, as the Quattro has given you so much trouble and the Ultra has a tougher shape to accomodate, I wonder if Respironics might suit you better.

But talk to James - he has all sorts of masks to fit all sorts of faces - and knows what he's taking about!

Meantime - Big R and a Poor You!

TF

[Alleycat]

OldCrow- if you are struggling with leaks into your eyes or nasal soreness and really don't think you could use a nasal mask the Resmed Liberty may be your solution. It is like nasal pillows (so nothing over the bridge of your nose) but also have a bit around your mouth to allow you to mouth breathe. They are quite expensive (I think around £125) but your hospital may be able to provide it. The only mouth only mask I know of is the Oracle from Fisher and Paykel but a combination is always better if you can breathe through your nose at all. Otherwise you get absolutely no humidification (the nose is a natural humidifier and filter) and you would definitely need a good humidifier with a mouth only mask.
The link below shows you the Liberty

http://www.resmed.com/uk/products/mirage_liberty/mirage-liberty.html?nc=patients

Hope you get sorted
AC
xxx

[Grumpy]

Try a nasal pillow

I have lots of sinus problems (heavy catarrh, occasional bleeding and headaches galore). I started with a full face mask as I thought I was a mouth breather (the dry mouth being the give-away) but struggled to cope. I tried a nasal pillow as a last resort and not only found it to be effective but it also relieved my sinus problems!

[OldCrow]

Keep battling.

There were several times that I nearly gave up completely and it took me about eight weeks to come to an accomodation with my full face mask. I still rarely get more than four or five hours before leaking and the very dry mouth but the very deep sleep really does seem to be effective. I've been intruigued by the nasal pillow masks but my health service doesn't do them. I've thought of buying one but I can live with my Quattro for the moment.

[Tigers Fan]

Congratulations!

Hi OldCrow

Good for you, mate! I admire you hugely for persevering and finding success! That deep sleep is good, n'est ce pas? and then some, innit!

For £25 plus a couple of years inflation, you can go to a mask makers Sleep Centre and try all the different types of mask as well as be shown how to fit your mask correctly - float like a butterfly, no stinging eyes. Is there a Centre near you?

TF

[davejwhite]

Funny you should say that ...

I've got a fitting session at Resmed in Birmingham tomorrow - it's at Coleshill, by the way. I'll report back on how it goes.

[OldCrow]

Living with Lamia

I still don't reckon on getting more than about five hours continuously but it IS good sleep. I wake up having hardly moved - sure I ache and my mouth is like the Sahara but... I'm not anything like as knackered during the day as I used to be. This means I'm able to do more which has helped my weight-loss campaign as you'll know being "non-anorexic" is a goodly part of the apnea thing. I really did used to hate my mask but now we have a reasonable accomodation; she has never failed yet to put me out or into a deep state of unconsciousness and the vivid dreams I experience just before waking are by no means unpleasant. I'm sure I'm weird but the hissing and gentle blowing I find quite hypnotic. I do want to go on with CPAP as I feel gratedul for being offered the sort of kit/assistance that just wasn't available until recently. According to my sleep study, I was stopping breathing up to 80 times per hour and with my brain jump-starting each time; it must have been like flicking a light switch continuously - I was aware of waking choking often and could snore to olympic qualifying level and must have been breathing very shallowly.
Sure CPAP and the whole mask thing isn't ideal but I'd advise folk having problems to stick with it. I really didn't think it was doing me good or felt like continuing for some time and having something clamped over your face is frankly a bit claustrophobic...but it's amazing what you can get used to. Losing 20lbs in weight has helped too. My Quattro, Lamia, and I are stuck with each other now and yeah, she is helping.

[Richard]

Living with Lamia

That is good, positive news.

Nobody would want to wear a face-mask from choice, but if you take the view of someone who has lost a limb, for example, and they have an artificial leg fitted, which means they are now able to walk, their whole outlook is changed for the better.

Similarly with CPAP-Therapy, it seems a small price to pay for restoring one's health and producing a good quality of life.

Richard

[davejwhite]

Promised feedback on my mask fitting session

Hi people,
I promised to let you know how I got on with my Resmed fitting session at Coleshill last Thursday.

Was greeted by Karen and Glynis - Glynis is the respiratory nurse who does the session. Provided with a cup of coffee - just as well as there wasn't a single cafe in the whole of Coleshill! Absolutely lovely setting at Coleshill Manor - walked through a little garden courtyard to the office suite itself. Gave a brief history, and she downloaded (or is it uploaded) my data from my Autoset S8 onto the computer. Wow - what they can't see on there isn't worth seeing! I have no idea why Resmed are now saying that only clinicians can have the software; it is so useful to be able to see. I guess that might confuse some people, but surely they can be trained.

I then related my tale of woe concerning my mask leak problem. I was using a Liberty Full Face, with the nasal pillows and wrestling with leaks every night, which was waking me up frequently. Glynis suggested I try the Ultra Mirage because it is more rigid and harder to displace when you get it right. I was wary about this - it was the one that came with the machine when I bought it. But Glynis said that it had been upgraded and the newer version was alot better. So she set it up and I tried it.

It sure is better. Easier to clean, better seal, and one of the major reasons why I didn't like it before - the headgear part - has been completely reworked. The old one had only five positions to 'space' the mask on the face so that the seal could inflate as it's supposed to. The new one has 23 positions on a kind of ratcheted screw, which you can adjust to suit when it is actually on. So you get the straps set to hold it on your head loosely, then you simply turn the screw until it stops leaking.Fantastic!

So I came away, including the £25 fitting fee,about £139 lighter, but with a brand new, state-of-the-art mask.

I've been using it for the past three nights now, and have had some pretty decent nights. I've still got a bit of fine tuning to do, but I think it will be fine.

Verdict: Well worth the personalised service the £25 buys.
Only bad news is that the Coleshill place is going to close, which will leave the Abingdon venue only this end of the country.

Hope this helps to advise anyone it might be useful to.

[Tigers Fan]

In my dreams

H Dave

It's a lovely, pleasant experience, isn't it??

And it happens in Britain - so why is the experience at most British hospitals (data anecdotally gleaned from this forum) so uttely different?

Why can't we have trained staff to help and guide us at the very difficult time of diagnosis and starting with CPAP therapy? A choice of masks?

In my dreams ..........

TF