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any one new to cpap when you think it is time to quit dont !!
well i had to just put pen to paper about my care and treatment to try and give a bit of hope to any one that is struggling . I started on cpap about 7 mouths ago i was given a normal cpap machine and full face mask sorry i cant remember the names. Things did not go to well and i kept going back to my local sleep clinic the sleep tech was really good and helpful she did all she could to help me she sent me home with an apap to see what pressure my normal cpap machine needed setting at i had it for 2 nights and these where the only 2 nights i had any sleep at all !!! During my time struggling i had to go off work sick as it made me so down and i could not think what i was doing . i asked about seeing if there was any chance getting an apap but this area does not prescribe Apap and seen as i had only had used one for 2 nights i was un sure if it was all in the mind !!! i used my Cpap every night with out fail for at least 4 hours but i was just feeling worse and worse . I was due to go and see the specialist and i was at my wits end as i had been trying for about 20 weeks, i am a fighter but by this time i was in bits unable to think about any thing so i came of my Cpap thinking that in 2 weeks time i was seeing the spacalist and i would get some help !!!!! little did i know what was going to happen !! i saw the so called sleep consultant for this area he basically he told me nothing he could do!!!!! i was suffering from insomnia and need to see a Psychologist ref this he looked in down my throat said i could not have an operation to help me cos i had to much fat and because i had not used my machine for the last 2 weeks he wanted it back and had i got it with me !! so the next day i went to hand it back in . All the time knowing that i needed some thing i was totally gutted it was like sending me home with a ticking time bomb !!!For the next few weeks i just thought sod it i will just not have any treatment . But Kath suggested going back to my Gp and may be seeing some one else and after talking to Roz on here who told us about MR OKO he was 3 hours drive from here on seeing him he looked down nose etc and gave me an apap machine with a respronic blue gel mask that was 2 weeks ago since then i use the mask and i am sleeping for about 7 to 8 hours as the days go on the happier i am with it i have not felt like this for over 15 years during this time i have had depression and was nearly sectioned i suffer with fibro and the last few days these things have improved to. so never give up there is always some one out there that can help you just have to find the right specialist !!
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Replies to This Discussion
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Permalink Reply by Terry Vella on
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Wwell done Gina, you will start to feel even better the longer you use it. My depression fully lifted after about 12 months and I've been fully off meds for 9 wekks now. I didn't have fibro but had the aches and pains and I really think in a lot of cases fibro could be associated with SA like depression is. Most of the time we have to take these things into our our hands and not rely on the medical profession as much because it's our body and brain. Please keep us updated on your progress.
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Permalink Reply by Kath Hope on
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As you know Gina, I'm over the moon for you and knew you wasn't a lost cause. All you needed was the right specialist (which thankfully you found in Mr Oko of the Snore Centre) and the right machine. Most people struggle with the mask, but that wasn't your problem - for you APAP is obviously the way forward. It's great that you're already feeling so much better, and as your body is finally repaid it's long overdue sleep debt things can only get better and better :)
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Permalink Reply by gina on
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yes i am so thankfull to Mr Oko he was wonderful and listens
Kath Hope said:As you know Gina, I'm over the moon for you and knew you wasn't a lost cause. All you needed was the right specialist (which thankfully you found in Mr Oko of the Snore Centre) and the right machine. Most people struggle with the mask, but that wasn't your problem - for you APAP is obviously the way forward. It's great that you're already feeling so much better, and as your body is finally repaid it's long overdue sleep debt things can only get better and better :)
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Permalink Reply by Deb Purcell on
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Hi my name is Deb..I am so happy that you hung in there and you never game up....but pardon my ignorance ...what is a apap machine and what is the difference...I have also have been using my machine for 8 months and rarely get a good night sleep...it will be interesting to hear the difference...Thanks Deb
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Deb, have you been back to your sleep specialist, you should be seeing the affcts by now. You may be getting leaks or need your pressure adjusted. Try to get to see him and get him to analysis your data from your machine.
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Hi Terry....Yes I have just been back and I should know results in a week...I think sometimes that there are leaks, as the sound of air wakes me, I guess I have to get a new mask or tighten my headstrap...I will try it out tonight. Thank You for your advise.
Terry Vella said:Deb, have you been back to your sleep specialist, you should be seeing the affcts by now. You may be getting leaks or need your pressure adjusted. Try to get to see him and get him to analysis your data from your machine.
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Deb, the difference between CPAP and APAP is that CPAP has a set pressure and blows at a constant rate, whereas APAP is an automatic machine and is set within a low-high range, so will blow at a minimum pressure and the pressure increases when an apnoea/hypopnoea is detected, which is when the pressure increases. People get confused because, in effect they are both CPAP machines in that they all blow continuously, but APAPs vary the pressure rate.
Deb Purcell said:Hi my name is Deb..I am so happy that you hung in there and you never game up....but pardon my ignorance ...what is a apap machine and what is the difference...I have also have been using my machine for 8 months and rarely get a good night sleep...it will be interesting to hear the difference...Thanks Deb
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Thanks Kath....I really am glad that I found this site as you have been so helpful..
I had a fairly good sleep last night, I take my mask off at about 4am as I really like to sleep with my head slightly in my pillow ...my neck hurt for a long time when I first started using my machine as I had to sleep with my head up a bit so as not to get leaks, I have tried to buy a CPAP pillow but no one here on the coast sells them, so I have 2 pillows and I try to sleep with one pillow in a different position so as I can sort of sleep with my head down...I have noticed that a lot of patients at the hospital where I work sleep on their back so that they dont knock their mask off..but I just cannot sleep on my back..
Thanks again
Deb :)
Kath Hope said:Deb, the difference between CPAP and APAP is that CPAP has a set pressure and blows at a constant rate, whereas APAP is an automatic machine and is set within a low-high range, so will blow at a minimum pressure and the pressure increases when an apnoea/hypopnoea is detected, which is when the pressure increases. People get confused because, in effect they are both CPAP machines in that they all blow continuously, but APAPs vary the pressure rate.
Deb Purcell said:Hi my name is Deb..I am so happy that you hung in there and you never game up....but pardon my ignorance ...what is a apap machine and what is the difference...I have also have been using my machine for 8 months and rarely get a good night sleep...it will be interesting to hear the difference...Thanks Deb
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Glad you found us Deb + glad to be of help :)
Deb Purcell said:Thanks Kath....I really am glad that I found this site as you have been so helpful..
I had a fairly good sleep last night, I take my mask off at about 4am as I really like to sleep with my head slightly in my pillow ...my neck hurt for a long time when I first started using my machine as I had to sleep with my head up a bit so as not to get leaks, I have tried to buy a CPAP pillow but no one here on the coast sells them, so I have 2 pillows and I try to sleep with one pillow in a different position so as I can sort of sleep with my head down...I have noticed that a lot of patients at the hospital where I work sleep on their back so that they dont knock their mask off..but I just cannot sleep on my back..
Thanks again
Deb :)
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Deb, you do have to play around with your pillows till you get it right then stick with it. I have the bottom pillow vertical (normal) and the top pillow horizontal (up and down) this way there is less real estate to knock the mask on, it seems to work for me.
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Hi Terry....Wow !!!! what a great idea...I never thought of that...good on you...I have spent a fortune on pillows
since I started using my cpap machine...I cannot wait to go to bed tonight and try that...Thanks I will let you know tomorrow how I go...gee it is only 10am here ...but I honestly think it will work..
Terry Vella said:Deb, you do have to play around with your pillows till you get it right then stick with it. I have the bottom pillow vertical (normal) and the top pillow horizontal (up and down) this way there is less real estate to knock the mask on, it seems to work for me.
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Deb, that's what I get paid the big bucks for, only joking. Hope it works for you and it will still take some getting used to. I do use a memory pillow for my top one, just because I have one, you don't have to go and buy one. I find it does keep me head steadier as it has a bit of a dip in the middle, just thought I would throw that in.
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