Zombie

[internuk]

Apologies for the following rant. I was diagnosed with moderate OSA a few months ago. Started with nasal mask but kept trying to breath through my mouth. Pressure was set much too high and I felt very let down. Had to write to hospital to get anything done, they don't answer the phone.
Now have a Mirage Liberty full face mask and have had three nights with no sleep at all ... until I took it off. Feel I'm being forced to be 'compliant' and use the evil thing for four hours a night, but I now feel like a zombie and am no use to anyone. Its turned my life upside down and is a total failure in every respect. I now feel worse than I ever have before. They told me I'd feel like a new man ... maybe I will when I give it back, with my compliments of course ! Once again, apologies for the rant, but nobody is listening.

[ElleCee]

Hi,
You haven't said what the actual problem is, we might be able to give our
2d worth if we know.
Is it just the mask? if it is there are some great tips to help make it work for you.
Don't give up too soon!

Lorraine

[internuk]

Zombie

Hi Lorraine,
Thanks for responding. Its the whole facial straightjacket, discomfort thing really ... and my total lack of faith in this 'solution'.
Icy blasts up my nose, toothache because of it, headache, dry mouth, sore nasal passages and septum ... but mainly the sheer gruesome discomfort of wearing the evil thing ... and the thought that I have no choice than to wear it forever. Its 3.45 am now and no sleep for the fourth night running. Just totally shattered and massively, massively disappointed. (Its MUCH worse than disappointed, but expletives would offend.) A total failure in every possible respect. Can't wait to give it back ! Applogies to the converts.
Regards,
Stuart

[ElleCee]

Hi Stuart,
It is a shame you feel that strongly about it, have you spoken to the sleep specialist since being given the kit?
I have only had mine about 5 weeks and am still finding out new tricks to make it more acceptable to wear.
No one would have this out of choice, but if you needed a pace maker to keep your heart ticking you would accept it. This is not really a lot different and with the pressures right, and they can take a while to get sorted (I am still in the tweeking stage) you should find it a lot easier to cope with.
Just keep asking on here and someone will have the answer, they have all gone through it, or, like me, are going through it.
Oh and for comfort, try RemZzz, I want to shout from the rooftops just how much difference they make. I could not use my mask without them, which reminds me that I need to order some more.
All the best
Lorraine

[Poppy56]

You need a humidifier - no more sore nose, dry throat etc then. Does your machine have a ramp switch so the pressure increases gradually and you are asleep by the time the gales start? Stick around here for solutions - I was a convert after the first night (my health authority gave me a humidifier and heated hose) and have felt amazingly full of energy ever since. I go through phases of wishing I didn't have to wear it but they don't last long.

[ElleCee]

Hi,
I did reply but it seems I am moderation... did I do something wrong?

[internuk]

Zombie continued

Hello Poppy,

Yes, the hospital promised a humidifier last week, but didn't offer me one. Said I didn't need it ! Last night was cold, so not a wink of sleep and a frozen face and nose again with a headache and toothache.
Unfortunately no point calling hospital as nothing happens between visits. Absolutely certain I can't keep this up much longer ... and mindful of the need to "be compliant" ! Still seems like the worst solution imaginable to me I'm afraid.

Stuart.

[internuk]

Still zombie

Hi Stuart,
It is a shame you feel that strongly about it, have you spoken to the sleep specialist since being given the kit?
I have only had mine about 5 weeks and am still finding out new tricks to make it more acceptable to wear.
No one would have this out of choice, but if you needed a pace maker to keep your heart ticking you would accept it. This is not really a lot different and with the pressures right, and they can take a while to get sorted (I am still in the tweeking stage) you should find it a lot easier to cope with.
Just keep asking on here and someone will have the answer, they have all gone through it, or, like me, are going through it.
Oh and for comfort, try RemZzz, I want to shout from the rooftops just how much difference they make. I could not use my mask without them, which reminds me that I need to order some more.
All the best
Lorraine

Hello Lorraine,

Apologies for not responding earlier. I haven't been back to the forum since my initial dismay ! I take your point about the pacemaker ... which I had removed ten years ago and a heart op cured the problem ... but this evil thing has been forced on me and I have no faith in it at all.
OK, here are my problems with the Liberty full face mask ...
Its very restricting, very uncomfortable, leaks as soon as I move (and I move a lot) and I absolutely hate even putting it on.
I'm doing my four hours to be "compliant" but have not had a wink of sleep and I'm now eight weeks into this dreadful process. Then I take it off and try to get some sleep ... by which time I have a blinding headache and toothache from the freezing air blasting up my nose. Oh yes, I also have a sore nose, dry mouth and irritated face, but hey, "its going to make a new man of me!" Once, I dropped off from sheer exhaustion and woke up with the tube around my throat, not too constricting, but worrying.
A humidifier ? No thanks. I developed a bad chest infection with the previous nasal mask, which would be made much worse with a humidifier apparently.
Support from the hospital ? Absolutely none whatsoever. I mentioned that I even had to write to them to get a response, since nobody answers messages left. The response was ... "Forget it for a week or two and we'll sort it out when you next come in." They didn't and I'm going balistic now.
I'm due to go back in a few days time and they'd better have a solution, or I'll be leaving the evil thing with them ! Sorry, but this is not a solution, its a bigger problem than ever ! I am self employed and I simply can't work in this state, I'm literally a zombie getting virtually no sleep ever ...
Best regards,
Stuart.

[internuk]

Zombie

Hi Stuart,
It is a shame you feel that strongly about it, have you spoken to the sleep specialist since being given the kit?
I have only had mine about 5 weeks and am still finding out new tricks to make it more acceptable to wear.
No one would have this out of choice, but if you needed a pace maker to keep your heart ticking you would accept it. This is not really a lot different and with the pressures right, and they can take a while to get sorted (I am still in the tweeking stage) you should find it a lot easier to cope with.
Just keep asking on here and someone will have the answer, they have all gone through it, or, like me, are going through it.
Oh and for comfort, try RemZzz, I want to shout from the rooftops just how much difference they make. I could not use my mask without them, which reminds me that I need to order some more.
All the best
Lorraine

Hi Lorraine,

I did respond, but don't know what happened to it !
Yes, I've spoken to the hospital, but no help at all. Was treated like a recalcitrant schoolboy actually and threatened with "lack of compliance".
I find the mask acutely uncomfortable and it leaks when I move (I move a lot).
I have permanent nose, tooth and headache and wear it for the four hours I'm supposed to, then take it off and try to get some sleep. By which time, I'm suffering the side effects too much anyway ... hence the zombie state.
Ironically, I did have a pacemaker, but a heart op ten years ago cured the problem, so I'm no 'sissy' about this. However, This is WAY beyond a joke now and I intend to give it back in a few days. Have genuinely tried with it, but lack of any support and the side effects, make it impossible for me to work and earn my living now. I literally am like a zombie !
I'm certain this isn't supposed to render me incapable, but that's what has happened and I simply can't afford to waste any more of my life on it.
Once again, my apologies to the happy converts, but I am dying to give it back !
Regards,
Stuart.

[internuk]

Zombie continued

Well kind folks, its after 2.30 am and I am in my usual frustrated state, having not had a wink of sleep with the evil machine and mask. I have a blinding headache and toothache (as always) and my nightly ritual about now, is taking a handful of paracetomol ... in the hope I'll get some proper sleep without the mask. I used to have a life !
I know I have dropped off a couple of times with the mask on (in three months), but out of sheer exhaustion. This is doing me good ?????? This is solving my problem ???? I'm going to get used to it ????? I think not.
Never mind, I'm being a very good boy and doing everything they tell me and I'm compliant, so that's OK ... isn't it ?
This is not a treatment, this is absolute torture and its wrecking my life.
Once again, I apologise for the frustrated rant, but the hospital aren't interested.
Stuart.

[Tigers Fan]

The time has come .....

Hi internuk

The time has come, surely, for you to up the anti? A letter to the CEO of whichever Trust your sleep clinic comes under - probably either the hospital Trust or your PCT and a letter to yout MP, telling each your story and complaint and that you have written to the other. Local Press wouldn't hurt, either. You know you have NICE on your side.

You would do this for yourself and it would be another brick in the wall of OSA patients getting their needs and rights met!

TF

[internuk]

Zombie continued

Hello TF,
Yes, I'm sure you're right. I have written to the hospital ... who told me to take a week off and try again !
As you rightly accept, I'm conscious that driving relies on compliance, which is the only reason I keep trying with CPAP.
I will right a stronger letter to the hospital and copy it to my MP. Thanks for the support and suggestion. I will let you know the outcome.
Kind regards,
Stuart.

[Tigers Fan]

Arghhhhhhhhhhhhh!!!

Hi internuk

If such patronising comments as "take a week off and try again" make you as mad as they make me, you have a lot of energy to channel into your letters - cool, calm, factual.

Good hunting!

TF

[internuk]

Zombie continued

Hello TF,

Yes, I did find the hospital's advice lame and irritating myself !
So, a letter will be on its way ... cool, calm and factual it will be of course. Thanks again.

Regards,

Stuart.

[OldCrow]

Mask of Doom?

Been having all sorts of problems myself with mask leaks and what have you - began to think I was better off before and not convinced it was doing me any good. Plus the whole performance of wearing the thing.
However I MAY be making some progress using guaze pads to plug the leaks. The main problem has been my growing hatred of the thing and the anxiety involved ...BUT I just may find a way we can live together IF I can feel some real benefit. Is there any way you can come to terms with it, or look at some other mask - as I may do - in order to get some comfort.