Zombie

[internuk]

zombie

Hello,
I'm pleased to hear that you are making progress. I'm a restless sleeper and suspect that any mask would leak at some stage, so I'll persevere with what I have for a while longer.
I've already written to the hospital with my concerns and experience and told them I felt better off before starting CPAP, but they have not replied yet.
I doubt that any of the "sleep technicians" I see has ever worn a mask for more than 30 minutes and have no conception of the torture which may ensue, but they are well meaning folk and don't like troublesome patients !
Meanwhile, my regime of torture continues and I have less and less confidence in this treatment every week.
Kind regards,
Stuart.

[mintra]

Oh dear

I could not tolerate a nose only job, now I am so used to full face that I feel bad without it. I am a technology positive person so I wanted this to work from the start.

I get a real problem with the mask if I have toothache.

The mask does not cause toothache, it is just that toothache and a mask dont work together.

Get your teeth fixed or you will have real mask problems.

It is not the masks fault that your teeth are not good.

Dont give up, see my intro (search for zombie.

These masks are Great

[internuk]

Teeth ?

Hi ! My teeth are perfect thankfully, no problems there at all. It was the freezing cold blast which caused the toothache originally ... but that's gone forever now. The hospital worked out that CPAP wasn't working for me (without me saying anything at all) and took the machine back ! What a relief ! I now have a simple "mandibular advance" gumshield device which I pop on my teeth and I just go to sleep. No evil machine thank goodness.

I have a new sleep test next week, which will tell them how successful it is. Fingers crossed ! I'm genuinely pleased that you're happy with CPAP, but I do think you should accept it doesn't work for everybody and it is VERY intrusive and restricting. I had six months of purgatory with CPAP. Now, I can put my "gumshield" in my pocket and go anywhere ... and sleep at last !
Kind regards,
Stuart.

I could not tolerate a nose only job, now I am so used to full face that I feel bad without it. I am a technology positive person so I wanted this to work from the start.

I get a real problem with the mask if I have toothache.

The mask does not cause toothache, it is just that toothache and a mask dont work together.

Get your teeth fixed or you will have real mask problems.

It is not the masks fault that your teeth are not good.

Dont give up, see my intro (search for zombie.

These masks are Great

[karen1009]

hiii
its really sad your having this trouble i was scared to death when i first got it i had a 10 mim app with the consultant who gave me the thing you wear on your wrist for your pulse and it measures your oxygen levels a week later i get a phone call to go and pick up a machine a few days later i come home with the machine and told i have severed sleep apnoea and need to wear this every night i couldnt get on with it i had the nasal mask that was uncomfy so i asked for a full face mask to see if that was more comfy that was a no no it was worse and i kept pulling it off i went back to the nasal mask ther and i was doing the same with that i just couldnt keep it on and as you say the dry mouth and the gruff voice was terrible anyway i saw the remzzz mask liners so i thought that looks like a good idea i bought some they were great it took that nast feeling away from h face i was dissapointed in the price of them but they work to make the mask feel more comy but you can make your own i made some out of a fleece jumper tha was a huge change i kept the mask on but stillhad the gruff voice i phoned the clininc they offered me the humidifier and that made a huge difference my gruff voice has gone im back to normal i would say stick with it and persevere with it the sleep nurse should be your point of contatc to answer your problems i must admit i was worried that i didnt have to go back to see my consultant just the nurse but i feel more comfertable with all that now i have a fantastic nurse who answers all my questiions i feel at the moment that my machine isnt working properly for me as im starting to feel tired in the day again i have a hell of aproblem trying to wake up i sleep through all of my alarms i set 5 but my friend comds in to wake me up in the morn and check on me thtough the day but without the machine i would be asleep all day hope you do get to feel bettr about the machine soon
karen

[internuk]

hiii
its really sad your having this trouble i was scared to death when i first got it i had a 10 mim app with the consultant who gave me the thing you wear on your wrist for your pulse and it measures your oxygen levels a week later i get a phone call to go and pick up a machine a few days later i come home with the machine and told i have severed sleep apnoea and need to wear this every night i couldnt get on with it i had the nasal mask that was uncomfy so i asked for a full face mask to see if that was more comfy that was a no no it was worse and i kept pulling it off i went back to the nasal mask ther and i was doing the same with that i just couldnt keep it on and as you say the dry mouth and the gruff voice was terrible anyway i saw the remzzz mask liners so i thought that looks like a good idea i bought some they were great it took that nast feeling away from h face i was dissapointed in the price of them but they work to make the mask feel more comy but you can make your own i made some out of a fleece jumper tha was a huge change i kept the mask on but stillhad the gruff voice i phoned the clininc they offered me the humidifier and that made a huge difference my gruff voice has gone im back to normal i would say stick with it and persevere with it the sleep nurse should be your point of contatc to answer your problems i must admit i was worried that i didnt have to go back to see my consultant just the nurse but i feel more comfertable with all that now i have a fantastic nurse who answers all my questiions i feel at the moment that my machine isnt working properly for me as im starting to feel tired in the day again i have a hell of aproblem trying to wake up i sleep through all of my alarms i set 5 but my friend comds in to wake me up in the morn and check on me thtough the day but without the machine i would be asleep all day hope you do get to feel bettr about the machine soon
karen

Hi Karen,
Good to hear your nurse is looking after you now and the machine is working out for you. Support is vital and its a pretty scary business anyway ! Well done on persevering with it !
Stuart.

[mintra]

How did you get on?

Reading this you seem to have had a number of issues which are no directly related to your machine.

Toothache is caused by bad teeth, it is definitely a separate issue to be dealt with by a dentist, cpap and bad teeth dont mix.

Autoritarian hosptital staff, are a separate issue read Adorno's book "the authoritarian personality" and just feel superior to them.

I had a totally positive experience, as I understand the power of belief and forced myself to believe this would change my world, and It did.

Read my initial posting, the zombie awakes.

[internuk]

Not helpful

My problems were entirely related to the machine, though hospital staff were less than helpful at times.
Your comments are patronising and wholly incorrect. I actually have perfect teeth, though they have always been "sensitive" to cold, hence the reaction to winter use of CPAP.
CPAP is not the only solution to apnoea, nor is it a particularly good one for everyone. I have found a better solution for me and didn't require the power of self belief or positive thought to arrive at it. Common sense simply prevailed !

[Tom @ Intus]

My problems were entirely related to the machine, though hospital staff were less than helpful at times.
Your comments are patronising and wholly incorrect. I actually have perfect teeth, though they have always been "sensitive" to cold, hence the reaction to winter use of CPAP.
CPAP is not the only solution to apnoea, nor is it a particularly good one for everyone. I have found a better solution for me and didn't require the power of self belief or positive thought to arrive at it. Common sense simply prevailed !

Hi Stuart,

Thanks for keeping us updated with your situation, and I'm glad you've found a solution now. As you say, CPAP isn't for everyone, although as sleep apnoea becomes more widely known and understood the CPAP systems are becoming more effective, with a wider range of solutions to accommodate a broader spectrum of people. That said, it is unlikely to ever be the right solution for everyone.

I would agree with you about your problems stemming from your machine. As somebody with sensitive teeth I can certainly sympathise. As others have said your situation was screaming "HUMIDIFIER!" but your sleep clinic appears to have been less than helpful in supplying you one. The level of service they provide is usually very good but it depends on which one you go to, I guess you were a bit unfortunate in this regard. A humidifier warms the air, and would have helped prevent your toothache as well as keep your airways from drying out. It would have made your CPAP treatment much more comfortable.

As for the mask, its entirely down to the individual as to what mask works for them. It didn't help that the lack of humidifier was affecting the quality of your therapy, which in turn probably made the mask feel even more of a burden. It is one of those things you get used to, and as the therapy starts to reap its rewards then you certainly become considerably more tolerant of it, but as you never got those rewards you're unlikely to then warm to the mask at all.

As karen1009 shows, there is very often a solution to a CPAP therapy problem, and it usually involves a bit of research, patience, trial and error, cooperation with the sleep clinic and luck. Once you've got your therapy working, it can be truly life-changing, but if it isn't right it can simply replace one problem with another. Fortunately with the wide range of options now out there the number of people who can't use CPAP is getting smaller and smaller. As I said, it's a shame it didn't work out for you but I'm glad you've found a solution for your situation, and thank you for keeping us informed about your situation and following up once you found a solution

Tom @ Intus

[Berneta]

Cpap Hell

Hi, I feel so sorry for all the torture you have been through, Unfortunately we all have to learn to deal with some problems to make CPAP use a success, I find a humidifer essential for me. Your problems seem excessive--your might as well be in a torture chamber. Have you asked your dentist if there is a cream or spray, that will make your teeth less sensitive? Here in the States we can buy toothpaste that slightly numbs the mouth. Have you tried the nose pillow? Straps adjusted properly prevent leaks no matter how much we move around, and nose lubricants stop sores and dry nose dead, I find the salt water nose sprays to be drying---so it might pay off for you to do some shopping to see what you can find yourself. There are even medicated sprays and onintments that stop the pain of nose sores while they heal. Of course its nice if you have a helpful concerned caring CPAP Therapist. Sounds like you are in the hands of people who really don't care if you are having a very very difficult time. I never tried the full face mask, as I had a ride in a helicopter where the oxygen mask was too claustrophobic for me to wear. So I started right off with the nose pillow and have had good luck with that. (Not entirely without little problems--but fixable.) It does take time to get used to sleeping while wearing a mask, With proper cleaning of the mask and or nose--there should be no infections. So I do so sympathize with you, I too have been through the Zombie State (6 years of it), and its unbearable and debilitating, I sometimes I was so tired and weak that I needed a wheelchair to get around. Sounds like you need a miracle--or a really good Therapist--hope you get one! You have my complete sympathy! Good luck, Berneta

[OldCrow]

It just takes time but you can get used to it.

I'm almost eight months in and I still cannot say I'm comfortable and trouble free, nor that it has been the answer to all my sleep problems but I'm coming to terms now with the fact that it isn't perfect but it does help. Leaks, dry mouth, monkey face and sore nose...well I could dwell on the negatives but......
It isn't that bad, now I'm used to it and I have familiarity and know what to expect. It really does render me unconscious and is probably the best breathing I do all day. Four to five hours of really deep sleep is a lot better than what I was getting. What I'm saying, I suppose, is that I'm trying to work WITH it, rather than against it.
The key to me was getting help with fitting problems from the support nurse at my centre; my mask has a number of adjustables and there is definitely a "just right" setting. It does take time; I used to really hate the whole performance, which, of course has you almost waiting for the pitfalls. Now? Well it's still a bit peculiar but I'm ok with it and I accept the niggles for what they are.

[internuk]

Solution ?

Hi Tom,
I found the forum a great source of information and potential support and though I personally didn't find the CPAP machine was ideal for me, I suspect that it is a good solution for most ... with a lot of experimentation perhaps !

I'm conscious that my comments may have been read by other new users and didn't want to fuel anyone's negative feelings towards the treatment, despite feeling rather negative about it myself. It is quite possible that, with the right support, I may have eventually settled down as a happy user.

Subsequent to my efforts with CPAP, I used a mandibular advancement device, suggested by the sleep clinic. This seemed to help, but never remained in my mouth all night, despite frequent "moulding' efforts. The side effect was toothache yet again, due to having my teeth pushed into unfamiliar alignment ... not jaw ache as was expected. However, the treatment was far less intrusive than CPAP.

I'm a widower, living alone, so there is nobody to tell me whether I snore or stop breathing, which my wife had been telling me for years. My guage is simply how tired I feel in the morning and throughout the day.

I was initially told at the sleep clinic that I'd "feel like a new man soon". I can't say I've reached that stage yet, but perhaps I'm getting there ?

The 'solution' for me has involved lifestyle changes ... stopping smoking, losing weight, taking more exercise, changing eating habits and going to bed earlier. There is one more very significant addition to my new regime however, going to bed in a bra !

Needless to say, I was not enthusiastic about telling the world about my nocturnal fetish (!) and even the hospital aren't aware of this. They think I wear a T shirt with two tennis balls sewn into pockets, to deter me from rolling onto my back. I found the T shirt rather hot and uncomfortable at this time of year and the bra was an inspiration from a female friend.

I now have two 42a soft bras, which perfectly accommodate the tennis balls and don't seem to restrict me at all. Worn back to front of course. My wife would have thought it hysterical, but I suspect she wouldn't have minded a bit, as it does seem to stop me snoring.

I now need to take a little care when throwing open the curtains in the morning, lest I shock the neighbours with my attire ... and I'd have to be careful if I ever had to evacuate in a rush for any reason ... but it is a solution and I don't seem to be developing any transgendered tendencies either ! I tend not to hang them on the washing line though ....

Best regards,

Stuart.

Hi Stuart,

Thanks for keeping us updated with your situation, and I'm glad you've found a solution now. As you say, CPAP isn't for everyone, although as sleep apnoea becomes more widely known and understood the CPAP systems are becoming more effective, with a wider range of solutions to accommodate a broader spectrum of people. That said, it is unlikely to ever be the right solution for everyone.

I would agree with you about your problems stemming from your machine. As somebody with sensitive teeth I can certainly sympathise. As others have said your situation was screaming "HUMIDIFIER!" but your sleep clinic appears to have been less than helpful in supplying you one. The level of service they provide is usually very good but it depends on which one you go to, I guess you were a bit unfortunate in this regard. A humidifier warms the air, and would have helped prevent your toothache as well as keep your airways from drying out. It would have made your CPAP treatment much more comfortable.

As for the mask, its entirely down to the individual as to what mask works for them. It didn't help that the lack of humidifier was affecting the quality of your therapy, which in turn probably made the mask feel even more of a burden. It is one of those things you get used to, and as the therapy starts to reap its rewards then you certainly become considerably more tolerant of it, but as you never got those rewards you're unlikely to then warm to the mask at all.

As karen1009 shows, there is very often a solution to a CPAP therapy problem, and it usually involves a bit of research, patience, trial and error, cooperation with the sleep clinic and luck. Once you've got your therapy working, it can be truly life-changing, but if it isn't right it can simply replace one problem with another. Fortunately with the wide range of options now out there the number of people who can't use CPAP is getting smaller and smaller. As I said, it's a shame it didn't work out for you but I'm glad you've found a solution for your situation, and thank you for keeping us informed about your situation and following up once you found a solution

Tom @ Intus

[James @ Intus]

Now there's a first, and a very clever trick too! The classic internet phrase "pics or it didn't happen" spring to mind, briefly, but let's take your word for it

In some people, OSA is indeed very much related to the body position. Some get very bad AHI on their back and almost nothing on their side. If that works for you, great!

But as you say, you have little to judge your success by. I'd be careful with assuming too quickly you have it cornered because if you still have mild OSA, you are still at risk of all sorts of health nasties. You could ask for (or arrange privately) for an oximeter study to check that with your bra-solution you don't still desaturate. That would prove it so you can relaly rest assured!