help on new mask - still far from ok

[andy5805]

Hi all

last night = hell night

my problem is getting to sleep (snoring awake) - and I can't increase pressure or it hurts - but my snoring has been so bad I'm on 8.5 -15 auto and my left deviated nostril kills when I try and go to sleep - its like razor blades up there but I think 8.5 isn't high enough - because I still snore awake - catch 22

my mask wants me to sleep on my back because of the pillows moving or coming out, so last night I thought - to hell with it, give it what it wants, and went for back sleep. Immediately AHI went through roof- between 3am and 4am I had a cluster of 8 hypoapneas and 3 obstructive apneas. Hypoapoea seems to be my thing as far as OSA goes.

So things learned - don't sleep on back no matter what. But what alternative do I have?

so finally fitful on my side, 4am, completely miserable now getting ready for work - this is not therapy, this is as bad as my illness and it is not acceptable

GOOD news is the NHS finally have me in for treatment Tuesday week - it cannot come soon enough. Need to survive until then

questions

1. I use cortisteroid to try and sort my nose out, will this make the razor blade effect in my left better or worse
2. when I go to clinic (HALLELULJAH!) , I am going to ask for a new mask because of this deviated left nostril. I think it's no good air going up there, yet I seem to need the pressure, is it possible to completely block the failed nostril and therefore get a higher pressure through the rest which actually works without feeling like breathing glass
3. I am 100% sure I'm going for a full face mask without pillows - the mask itself injures me - too slack and leaks, too tight and injured top lip drawing blood the pillows hurt, and they do not stay still no matter what I do, and they're also completely designed so I cannot side sleep yet if I back sleep it's a lot worse, I need to side sleep
I do need some kind of chin restraint too, can anyone recommend a good full face mask that is ok to side sleep on and doesn't leak when you side sleep? With the option to mouth breathe if everything fails but ideally preferring nose breathing when I'm up to it

last night was the nearest I've come to throwing the towel in but I'm still 100% compliant even though cleary, my therapy has quite a few flaws in it - not least that I need a pressure to stop snoring awake and losing half the night that my left nose will not let me have, and that I have a mask designed for sleeping on my back, but because of the size of my tongue, back sleeping is just a silly idea and ups the AHI a lot!

put very scientifically these are my three issues - any one of these is a deal breaker- therapy is as much to blame as the illness.

left nostril hurts so much I don't get to sleep (therapy wakes me up ) OR higher pressure needed to stop snoring awake (illness wakes me up)
side sleep mask doesn't stay put and leaks wake me up (therapy wakes me up) OR sleep on back (illness wakes me up)
mask is too tight, makes my face bleed by friction (therapy wakes me up ) OR mask is comfortable, leaks occur (illness or therapy wakes me up)


Thanks so much
Andy

[49er]

Andy,

Sorry if you have mentioned this before but have you looked into having surgery on your deviated septum since it seems to be greatly effecting your therapy?

I am sorry you are struggling so much and hope you find a solution.

49er

[Hawthorne]

Do you use anything to help with the nasal pillows irritation? I use Lansinoh. It is lanolin. It is used for breast feeding mothers to help with problems. I put a very small amount just inside my nares - just enough to make it tacky and it helps with irritation as well as keeping the nasal pillows more stable.

This will not harm your nasal pillows and is safe for you. Don't use anything with a petroleum base or your nasal pillows will deteriorate quickly.

I don't know how severe your deviated septum is but this may help. It may be that you cannot use nasal pillows because the deviation is too severe.

[Stormynights]

The Sleepweaver Anew is a cloth mask that might work for you. You can sleep comfortably on your side with that one. It is not for everyone, but seems to be perfect for some. No mask is perfect for everyone because we don't have the same issues or face shape.

[andy5805]

thanks for your replies - I'm in , 3pm English time after work ( thank goodness finished early) and going to bed - this feels like groundhog day - and like before the machine. I'm unbelievably depressed about my inability to sleep any which way without snoring awake. I keep telling myself -everything is so black because I have not slept in days

I do use lanolin and it has helped

I did have surgery, I think it's harmed my efforts with the machine not helped them - my left nose certainly hasn't healed since I had surgery (last April ) if the knives going up it are anything to go by

so I'm going to put the pressure down now and therefore snort awake 10000 times before a great sleep. OSA and treatment is eating up my whole life including time off work, it is a survival wretched twilight of an existence, every single thing a massive fight, not a joy to live - at least with the lower pressures I won't have knives up my nose and when I sleep it'll be good

then I have to wait until next time I'm so exhausted I can ignore the snoring - which is completely at odds with having a regular 9-5 job. I try so hard there to act normal when I'm clearly in such a bad way. I make so many mistakes because I am ill, then I fix them when I'm well, and so on and so forth

sound like a teenage emo and kicking myself for it as I'm normally so positive but this is exactly the evil place that repeated slepe deprivation takes you to

so, let's try again, for the 3rd "night" in a row.

[RandyJ]

Are you seeing an ENT for the nose? He could look up there with a scope and see if your pain is coming from irritation to the membranes. I can't imagine cpap is causing the pain, and normally a steroid would help rather than exacerbate. You could consider irrigating; Boots sells the NeilMed set (water bottle or netipot with pre-measured saline packets). Once a day in the evening for a week or so should begin to sort out your nose, and might open things up more on the deviated side.

I use one spray in each nostril of Nasonex (Mometasone) and I find it helps me a lot.

If you are going to transition from what you have to a full face mask, I would see if you can get the Resmed Quattro Air. It has a similar cushion to the old Mirage Quattro, but the mask frame is a bigger version of the Mirage FX nasal mask. It seems really light and low profile. I was able to sleep fine on my side with the Mirage Quattro, I don't see why the Quattro Air should be different. With full face masks keeping leaks under control is always a factor, and often a headache, but if you want to go that route you just have to work at it if it's not perfect out of the box.

I don't know about blocking one nostril, if that is ever done, but maybe with a full face mask instead of what you have it may not be necessary.

Keep at it, though, you'll get there...

[andy5805]

Thanks Randy J something you said there helped me last night

can't leave it on a bad note, I slept last night. Here's what I did

1. go for 2 pillows for my head and an extra pillow below it for my body - gap was for the mask, and that really worked
2. realised that the extreme pain was from the left pillow hitting the centre of my nose with fast moving air particles - this bit is killing me even now. What happened was the tights trick which had previously helped me was skewing the left pillow in a "V" shape - allowing it to fire straight outwards from my face into the centre of my nose. It's nearly painless when it's straight. I went too mental with the tights trick and it became counterproductive! on the right it kept connecting my lip to the pillow, leading to contact, non contact, then violent twitching as my face tried to take the mask off
3. got more tights and made a massive vertical chin strap
4. used the tights previously round the pillows and instead at lower tension put them round the hard mask beneath the pillows
5. stayed in one place between the bed pillows and didn't move

its clear to me that this mask is not right for me because nasal pillows fall out and I have a deviated left nostril. So while the tights trick is needed to keep the right one in, it puts the left one in a tick and abuses the middle of my nose causing pain - clearly its failing clearly it has straps that are loosening but also clearly its wrong for me because frequently something I need to fix one nostril will abuse the other. And a setting I need for one to work, means the other pops out. I'm a side sleeper, I think this mask is completely incompatible with side sleeping. it is built for back sleepers. It wants you to (assumes) you are a bad back sleeper and that's why you got it, it's technology is built around that assumption - the reason you need it is because your sleep hygiene is rubbish already etc, and this is completely unacceptable because back sleeping is worse for sleep apnoea - I knew this before I got treatment, and I trained myself for years to sleep on my side to limit the damage, I cannot just change that - and we can't all just turn up pressures and accommodate the mask's design without secondary issues leading to the therapy being worse than the illness.

There's hope - in that for 6 working days I'll try the above and try and not move sleeping on my left not my right - and then, stands to reason - go for a different mask at the clinic i.e. FFM , no pillows, straightforward, not millions of straps, stays in one place, SUPPORTS PROPER SIDE SLEEPING- if I'm wrong I have my old workhorse, if I'm right, no more issues with nasal pillows - two chances next week, it make sense to go for something completely different not more of the same, doubles the odds.

Thanks all for your help
Andy

[neallo]

I have a Quattro Air and naked leaks for three weeks, but while I still wake up too minor leaks I am in a better sleep. I like my Quattro Air, because I tend to mouth breathe and I have tried everything to stop that, but can't seem to stop (chin strap ordered and will be here this week)

My best sleep is on my side, but pillow tends to push mask off or into leak zone which I have learned to fold my old worn firm pillow in half. Which makes it easier to hang my mask off the edge of the pillow and I sleep comfortably and leaks are minimized.

[andy5805]

thanks all for tips, will discuss them when I see the NHS next week

I'm getting ready for work, (In UK ) doing far better this week

I think it's a little like customer service on ebay, you only get the people posting who got a bad deal so I feel it's important I post when I get a good deal also

last night was fantastic sleep, I'm still 1000000% better off using the machine than not using it

regards
ANdy

[Surly]

Fisher & Paykel make an oral mask called Oracle 2. It's used in conjunction with a nose plug. Maybe it might be worth looking at whether this type of mask is suitable for you.