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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 Deb Purcell on
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Hi Terry
Well I did what you said, and I donr know why I didnt think of it myself hahaha I have to say I slept a bit longer and it is probably because I was not knocking my mask against the pillow my neck is a little sore but that is natural when a person changes the way you use a pillow...
Thanks again
Deb :)
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Permalink Reply by Terry Vella on
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Deb, will be interested to know how you go after a couple of days, your neck will be sore as we have slept the same way for a long time and this is a change. If you have any Deep Heat or Dencorub give it a rub. You may find you slide down the bed a bit because the pillow is on a different angle this may change your head and neck position. If that happens either start higher up the pillow or start sleeping further down the bed so you can't slide down the bed (I know this is very hard to explian in words. It's good you slept a bit longer, it gets better over time. It won't happen straight away. I no longer knock my mask and have it on for a full 8 hours per night, good luck with it.
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Permalink Reply by Roz B on
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Hi Gina
sorry I hadn't caught up with this thread, I am so behind with all my emails, i have about 65 unread at the moment, and i would say im working through them slowly, but slow means really slowly lol
Im so pleased for you that since seeing Mr Oko you are getting that much needed sleep. For me it hasn't helped my fibro unfortunately but I i understand it can. our muscles have been starved of oxygen for so many years its not surprising they hurt so much.
At the moment i am also finding I am nodding off more, this was something that never really happened to me much before i was diagnosed but i think its due to taking such a mixture of meds.
The way I think about using the CPAP is that if I can, anyone can as I refused to use it initially, the thought of anything over my face at night was horrific, but I did a lot of reading up online and went back to see Mr Oko and he was relived that I did. I'm now 100% compliant and have come down from an AHI of 62 to less than 5 in most nights
well done to you Gina for sticking with it xxx (((hugs)))
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Permalink Reply by Kath Hope on
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I know the feeling Roz - am wading through emails myself at the same time as drinking diet coke - not a good idea before bed :( Most people with fibro do find a big improvement to their pain, but tiredness, as you know, makes fibro worse. I'm really hoping this will happen for you too once you're off your meds, which also make people tired - even though they're necessary at times. Hang in there Roz :)
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Permalink Reply by gina on
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Thanks Roz
fingers and toes crossed that in time your fibro will improve mine is still there but better than has been . But my mood has greatly improved .
strange i am like you Roz that in a evening i am nodding of and i never used to do this . i am having a little problem with my mask at the moment it has made my teeth loose and MR oko has been so helpful. just waiting for a new mask to come so pleased that i listened to you and kath changed my lifexx
Roz B said:Hi Gina
sorry I hadn't caught up with this thread, I am so behind with all my emails, i have about 65 unread at the moment, and i would say im working through them slowly, but slow means really slowly lol
Im so pleased for you that since seeing Mr Oko you are getting that much needed sleep. For me it hasn't helped my fibro unfortunately but I i understand it can. our muscles have been starved of oxygen for so many years its not surprising they hurt so much.
At the moment i am also finding I am nodding off more, this was something that never really happened to me much before i was diagnosed but i think its due to taking such a mixture of meds.
The way I think about using the CPAP is that if I can, anyone can as I refused to use it initially, the thought of anything over my face at night was horrific, but I did a lot of reading up online and went back to see Mr Oko and he was relived that I did. I'm now 100% compliant and have come down from an AHI of 62 to less than 5 in most nights
well done to you Gina for sticking with it xxx (((hugs)))
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