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cpap since dec
I have been on CPAP since Dec and I have never had more than 4 hours a night sleep with it. In fact having 4 hours is a good night and I normally manage about 2 hours. I put my mask on to go to sleep - sometimes I get to sleep quickly and other times it takes a while, but when I get to sleep I only sleep for the longest 2 hours. I have no idea what wakes me, as when I do not use the CPAP I do sleep for longer, but yes, I still wake up. However, using the CPAP has made me worse sleeping, though I did get 2 good nights sleep when the sleep clinic gave me an APAP machine for 2 nights. I am going to see the specialist again soon but I am at the end of my tether with it all, and I know I need to use the CPAP as I am a nurse.
Kath has been supporting me and has been a great help, but I've still not managed. I've tried different masks, but I do not think it is the mask as I am ok with it. I have no leakage and I've even taken sleep relaxing tablets. In fact I have tried everything and I am not someone who gives in easy, but the last week I've stopped trying with the mask. I do not know why i am posting this really but you never know.... someone my have some other ideas to try .
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Replies to This Discussion
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Permalink Reply by gina on
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Mr Oke sounds what a consultant should be like. Wish he had been mine as maybe I'd not have had to cope with all the problems I've had. It's changed my life completely and I need to try and see some one about it allxx
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Permalink Reply by Kath Hope on
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He certainly is Gina, and if you've not checked your emails, he said he'll be delighted to see you for a 2nd opinion :)
gina said:Mr Oke sounds what a consultant should be like. Wish he had been mine as maybe I'd not have had to cope with all the problems I've had. It's changed my life completely and I need to try and see some one about it allxx
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Permalink Reply by Roz B on
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That's fantastic news Kath and Gina, and Kath you area marvel as i assume you have been in touch with him :)
Wishing you the best of luck Gina.. you will see what I mean when you meet Mr Oko. You'll have to keep us updated. xx
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Yes Roz, and very helpful advice was given. I'm looking forward to meeting Mr Oko myself soon :)
Roz B said:That's fantastic news Kath and Gina, and Kath you area marvel as i assume you have been in touch with him :)
Wishing you the best of luck Gina.. you will see what I mean when you meet Mr Oko. You'll have to keep us updated. xx
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up to reading this i had decided not to do any thing and i was not even going back to ask dr her advise but i am slowly changing my mind as i do want to be here in years to come hopfully so back to the dr for me and to ask for a 2nd opinion thanks to you all and for expecally Kathxxxx
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Well I've been back to see my GP to tell her what happened at my evenful visit to consultant, and at least she will send me to see Mr Oko which is brill, so all i can do is keep my fingers crossed and hope. I am worried as I've felt so let down as I really think the consultant did not care and maybe wanted me to get discharged to hit his target - on paper I've probably been put down as healed!!! I did get a copy of a letter from consultant to my Dr saying my AHI is 33 and my mean desaturation is 93 per cent with a dip rate 13/hr if that make sense to any one !!! Maybe it means i am cured ???? ( i did not think so )
I'd just like to say thanks to all on here for been so helpful and once a gain my biggest thank you goes to Kath, because if it wasn't for her I would not have gone back to GP xx
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Thats great news Gina, I'm so pleased your GP has agreed to refer you to see Mr Oko. He wont leave you like that. You have done the right thing and i am sure it wont be too long before you get your appointment through.
Although he has now put me onto Telephone consultations, its so I don't have to travel all the time. I dont feel at all that they have just left me to it. Even though I am in control of using the CPAP machine etc I know they are there at the end of the phone, philips too should I need them.
I don't really understand the desaturations etc, but I know my initial reading of my AHI was 62 and the machine is now reading around 3. If i stop using the machine I know it will go back up. I am using a mandibular advancement device along with the mask. It helps keep my receding jaw forward to give me extra 'help'.
If you have any particular questions you want to ask him, write them down before you go. he will not rush you and he will certainly put your mind at ease. I know I wouldn't have come this far had it not been for him
Wishing you good luck…...Let us know how you get on.
hugs roz xx
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Out of interest Roz, is your AHI higher when you don't use the mandibular device as well as your CPAP?
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Permalink Reply by Terry Vella on
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Gina, I'm not sure about the desaturation either as mine is straight sleep apnea but an AHI of 33 is considered as severe SA, so you are not cured and I know that you know that no matter what the consultant says. Roz is right about writing down all your questions because it can get confusing at appointments. You know how you feel and that you need to continue on until you get the treatment you deserve, keep going.
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I'm not sure as i havent tested it yet .As the nights were getting warmer I found the chin strap was making me too hot around my face, so I started to use the MAD full time with the mask.
As I have only recently changed the mask its not been long enough to test it, but its something that was on my mind to do…. If only I could automatically sleep with my mouth closed it would be a huge help!! Steve was considering Gaffer tape!!! :0
I look at the figures on the machine daily and although still low, I hate seeing them creeping up… my 2.8 and 2.9 didnt last too long … but its still low at just over 3. I think its a miracle that when diagnosed they were extremely high and now 'normal' its a good feeling :)
It would only be CPAP users who could understand that feeling…. others who haven't a clue about it, think I have gone mad!! may be they are right lol xxxx
Kath Hope said:Out of interest Roz, is your AHI higher when you don't use the mandibular device as well as your CPAP?
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Apparently there are people out there who do use tape to keep their mouths shut - sounds scary to me!
Will be interesting to hear some comparisons when you have them Roz. For people with a receding jaw, my guess is that using a mandibular device with CPAP should bring lower AHIs.
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It sounds too scary to me too!! lol
When I first started using the CPAP it was without the MAD, I used the Optilife mask at the time and that has a chin support. It isnt really meant as such which I'm sure you know, its to hold the nasal mask in place but that did the job nicely for a while until I kept getting a sore nose, but it did bring my AHI down. Sadly I don't have a record back then. I only started keeping my own record after the first card was sent in.
At the moment the AHI is creeping back up, its still low, at 3.9 today, but it was nice the other day to see it as low as 2.8. When I can see its settling down I will try it without the mandibula device and just use a chin strap then we'll hopefully be able to see if it makes a difference. xx
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