Help Please Mask Blows off Husbands Face

[Sweet Sue]

Hi all
I have finally found a site in the UK that has support.
My husband has been finally diagnosed as OSA he stops breathing about 29 times an hour for about I min at a time. He had a resperonics Stardust machine to do a sleep trial. then a second one!!!! hmm not unusual it seems.
Got his Reseronics auto with Cflex through the post.
Mask was fitted? at the hospital. Sitting up only?? He has a beard.
He has trimmed it so that the mask fits the skin, (its a full mask comfort gel M Resperonics)
He can't seem to get it comfortable it seems to catch on his lip & all the wriggling in the world doesnt help.
Once he does get settled the machine seems to get up steam to such a pressure that it is blowing the mask off his face, blowing up his cheeks like a hamster, & making so much noise it sounds like there is a gale blowing in the bedroom. He is constantly fighting to breath out. after the first week he threatened to give it up, no sleep, pain the chest from cold dry air etc.
After speaking to the team at Resperonics they have now sent through an humidifier. Seems to have helped a bit.
I've gone onto ear plugs I need sleep as well, (I had a Stroke 2 years ago)
He can cope with the violence of the pressure for about 2 hrs max.
some nights it has only been for 1/2hr.
the smart card has gone back to resperonics for the first week evaluation. He has now been on the machine for 17 nights.
Because of the serious disruption of sleep caused by the mask lifting off his face, the sleep patten is now worse that before.
Any extra advice Please??????

[Joe McManus]

Hi Sue, welcome to the group!

The first few nights are quite daunting for most. Keep remembering the benefits it will give him when things start working out. They should be worth the initial trial and error.

A couple of things spring to mind based on your post.

Could you confirm the mask he has? A comfort gel is not a full face mask. It has a gel ring but the official name doesn't have gel in it. Establishing whether he has one that does or doesn't cover his mouth will help.

Next thing to look at is general breathing ability. Could his sinuses be clogged up? Can he breathe freely through his nose? Trouble here often lead to air backing up causing leaks.

Facial hair is a tricky one. He may have to get a bit more rigorous with the trimmer. If it doesn't help it'll grow back!

Getting the straps right takes most of us over a week. Keep playing with it.

Also check the pressure of the machine. The smart card read out will give an insight here. It may be higher than anticipated.

Also double check C-Flex is on. This will lower pressure on exhalation so it becomes a lot easier to breathe out.

Setting the ramp time on max time span also helps ease newbies into the therapy.

A lot to work out nut with Respironics you have a responsive company at your side. Remember that CPAP is designed to tackle a complicated situation. The means to a complicated situation will never be easy. Many sufferers also consider a more holistic approach involving weightloss, diet and excersize and some even singing, for toning the throat muscles.

Whatever the progress, we'll be here to help the two of you out!

[Sweet Sue]

Hi Joe
Thanks for the support.
Right. - Face mask is Comfortfull2 M He is a mouth breather.

He has now got sinus spray on advise of Respironics team.

I have now sat down with him & tried to make sense of the controls. Hmmm
looks as if everything except the cflex is disabled.

the ramp is preset & can't be changed.

We don't have access to the smartcard?
I did ask the nurse when we were at Norwich hospital to have a copy of the reports & the settings for the CPAP machine. Still waiting on that.

He already does reasonable excise as we have 2 horses who need to be fed & mucked out twice a day. He is never still, always on the go, pushing himself to the limits that he sets himself.
He is not overweight.
Sing!!!! not with his off key voice.

He does breath very gently, & over the 30+ years that this has been going on, his breathing will sometimes gently fade away to stop.

Yesterday I down loaded the mask fitting instructions from the US site.
We seem to have followed them & we think that it is all fitting correctly.

He has been using the Cflex, which in the best setting to try?
The nurse at the hospital suggested 3?
He says that it is such an effort to breath, as if he is fighting the machine all the time.
I know that some times during the day he has to think about breathing, when he is very relaxed, he just stops.

Over this weekend we need to get together a whole set of questions for him to talk to the sleep team about on Monday.

All this because I nagged him to go to the doctors after watching sleep clinic on the TV.

Sue

[chelseauk]

Hi ya,

As someone who has also just started with CPAP using a remstar auto and a comfort full - i may have some tips - as mine actually stayed on fully last night !!! Hurray.

First off check what the mask is - http://www.cpap-europe.com has pictures of the respironics ones then use the clinicians fitting guide - the "user fitting instructions" didn't help me at all.

I've stuck some links here http://forums.cpap.co.uk/showthread.php?t=141 step through them and it should help.

Now - I had mine setup at the hospital sitting up with the respironics auto set to 4.0 and seeing my rate is high (over 16.0) when it's in use it was no wonder that it leaks. The responics site said set the mask up at the prescribed rate.

What is your machine set to ? (What does it come on at when you press the power button) ?

And what is your prescribed rate ? - or if you don't know scroll through the menus using > button and you should have a screen saying 90% (cmH2o) that should say what your machine was working at for most of the time - assuming of course you managed to use it all.

Bottom line is for me - i had to change some setting on the machine to get the mask to stay on. Nothing major - i just turned up the basic minimum pressure setting and then set the mask up. - Because mine was so high the mask is uncomfortable at the start - i altered the start setting perminently. My NHS tech will probably tell me off - but hey i need this to work - and when i rung them i was offered an appointment weeks away.

[Sweet Sue]

Hooray New Mask

Hi All
New Mask has just arrived.
One large size Comfort full.
Oh I do hope that things will improve tonight as last night was his lowest ebb
Fingers crossed.

Sue

[chelseauk]

Hi,

I'm suffering similar problems - newbie to cpap and struggling with the mask - the machine is on auto and it keeps running up to about 18 - and to keep it on i end up nearly breaking my neck with the straps.

Last night i had a decent nights sleep - it started off badly - i couldn't get the straps right (I use comfort full) despite using "simple brand wipes etc) and to be honest i was about ready to give up for one night. My other half (who has been wonderful - really supportive) - wouldn't let me - so i tried again - and no good - still couldn't settle or get it right.

In desperation - i moved room with the machine and tried again - and had a really decent sleep - what i hadn't realised is that a lot of my problems - where that i was really worried about keeping the wife awake - everytime the mask made a noise - or my nose itched. Being on my own helped - when my noise itched i just moved the thing and scratched it !

Now i'm not itending for this to be a perminant move - but i'll stay put for a few nights to give me and the wife a bit of respite.

I do so understand what your otherhalf is going through - so please tell he aint alone - but hang on in there !

[puffin]

Hope the new mask was better last night?

Gave my mask and straps a good washing yesterday. The straps had tightened up a little bit too much as they dried. So after an hour in bed, it felt like my head was being squished in a vise, so its back to playing with the straps yet again!

[Sweet Sue]

Hi all
Many many thanks for the support,
Last night was a little better. He said it's more comfortable with the large mask.
But he was still fighting with it to keep it in place.
He got about 2 1/2 hours so that is a bonus.
If he wanted to use the spare room the bed has to be cleared.
So I use ear plugs instead, so he doesn't have to worry about keeping me awake.
Because he has had such a difficult start, that is what he now has to get over.
Still the weekend is coming so a lay in will help & then out into the forest with the horse & carriage, avoiding the shooting parties.

Cheers
Sue

[chelseauk]

One thing i noticed is it can take over your life !

You get obsessed by cpap and worried about it.

So having a bit of fun and doing something different - could be a bit of a tonic.

[acebass]

Hi all
So I use ear plugs instead, so he doesn't have to worry about keeping me awake.

Just having an understanding Partner like yourself can be a boost, the fact that you understand the problem he is having adjusting to it and trying to help will make more difference than you know......