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Hello everyone,
I thought I would share a recent experience with you all in the hope that it will be of help to some of you. I have just completed my first 8 weeks of therapy using the CPAP and I have personally been delighted with the improvement it has made to my life and well-being.
Imagine my surprise therefore, when I attended my sleep clinic yesterday for my first review, to be told that I had not complied with the treatment. The reading showed that I had not used the CPAP for a total of 17 nights (9 of these were in a row) and they were unable to give me my average.
I am lucky in that I have worked for both the NHS and University of Liverpool (Medical School - working for hospital consultants in research) since I was 20 (I'm now 56) and although I was brought up in an era where my elders believed that what the doctor told you was gospel and what they said should unequivocally be followed and never questioned - I know different and always question everything I am not sure of. I am fortunate in that I adapted to the CPAP straight away and other than the odd occasion of leaking mask (solved by repositioning either myself or the mask), the odd "damp" face, and the odd "sore nose" (the latter relieved by the wonderful moisturising cream available from the the hope to sleep shop), I have had few problems. I have also kept a sleep diary and I knew without shadow of doubt that in total I had not used my CPAP for 3 nights and definitely no more. I am not sure how it works in your areas but apparently in Liverpool if you are deemed not to comply with your treatment regimen they can take the equipment off you! Well, I would have walked over hot coals and broken glass before I allowed them to take mine away...
So I challenged them! When the sleep technician recovered from the shock she went away to get another reading and lo and behold the second reading showed that I had not used the CPAP for 3 nights only and my average was 5.9 (apparently it has to be over 4).
My advice to you is this, gone are the days when doctors and the medical profession in general were Gods, they are after all only human and as such liable to make mistakes. If you doubt the accuracy of the reading question it and ask for it to be repeated. As a result of yesterday I have now been told I need not return for 12 months unless I have a problem, and naturally my machine came home with me!
As I left the clinic I spoke to a gentleman who had seen the same sleep technician (he was at the clinic when I first attended to pick up my CPAP & remembered me), the gentleman told me he was very confused, he had not adapted to the treatment at all and through his first 8 weeks told me that he had only used his CPAP for a total of 5 nights - but his reading showed he had not complied for only 14. Something is seriously wrong somewhere.
The reason (excuse) I was given was that it was a problem with the software, I'm not sure if this is true or whether it is a problem with the sleep technician analysing the data - whatever, I'm happy I have my machine back and that I feel so much better because of it.
I just wanted to alert you to my experience in case something similar should happen to you - I implore you, keep a sleep diary and if in doubt ASK!
Happy sleeping.
Joanne
Views: 446
Replies to This Discussion
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Permalink Reply by Rosemary Kemp on
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Strangely enough Marion, I also like my nasal masks the best and I had previously been a mouth breather. I tried chin straps and didn't find them helpful but I do sleep on my side and don't get on too well with full face masks.
It's another example of things that work for some not working for others! We're an individual lot aren't we?
Rosemary
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Permalink Reply by Kath Hope on
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I tried a chin strap only once and thought I was suffocating, but that was before my nasal operation when no air could physically get up my nose so I couldn't breathe at all. Maybe I should give it another try, but there again I'm quite happy with my full face masks, so perhaps I should leave well alone......too expensive to get in a fresh supply of nasal masks ;)
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That's very interesting Martin, as it's not often you hear about Dr's in the UK prescribing tablets such as this. However, a lot of americans seem to use them.
Martin Nightingale said:
Kath
Modafinal Tablets work wonders!! They are specifically to keep you awake during the day. On prescription only not sure if every doctor would be aware but in my case prescribed by Consultant at London Chest. So far no side affects unless you take more than 4 in a day. I did this once and felt I was on a high and flying round the room!! Never again!
My CPAP treatment seems to be successful, at least no falling asleep at the wheel!!
Apparently during World War 2 Modafinal was given to the Pilots of the Canadian Air Force to keep them awake during long missions.
Martin
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Permalink Reply by paula jones on
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Thanks kath,for inbox message,i did mention the tabs to my doc and he said theres nothing i can have only Pro plus and things like that,but he doesnt recommend it,cause they r bad for u...Grrrrr ..Idiot!! he gave me slimming tabs instead to help me with my diet!! Duh!! mind u they might help!! hehehe x x
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I wonder why the UK GP's aren't keen on prescribing them. There's obviously side effects, but then there is with every drug. Let's hope the slimming pills work - weight loss certainly increases energy, so you might get the same effect even though you've gone about it a different way LOL.
paula jones said:
Thanks kath,for inbox message,i did mention the tabs to my doc and he said theres nothing i can have only Pro plus and things like that,but he doesnt recommend it,cause they r bad for u...Grrrrr ..Idiot!! he gave me slimming tabs instead to help me with my diet!! Duh!! mind u they might help!! hehehe x x
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thanks kath and hope so,its just hard sometimes to function,but gotta keep plodding on slowly....then rest..lol.. sure my Pastor at church thinks i think his sermons r boring cause i yawn all the through,hehe,he does know iv got sleep apnea,but still ,hahaha and when people r talking to me,i look so tired and not interested..im giving everyone a complex,LOL..
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LOL. At least he knows you've got OSA! I gave a talk on OSA a while ago to a church meeting and the vicar was quite pleased to hear that the reason some of the congregation were falling asleep during the services might not be connected to his sermons after all :D
paula jones said:
thanks kath and hope so,its just hard sometimes to function,but gotta keep plodding on slowly....then rest..lol.. sure my Pastor at church thinks i think his sermons r boring cause i yawn all the through,hehe,he does know iv got sleep apnea,but still ,hahaha and when people r talking to me,i look so tired and not interested..im giving everyone a complex,LOL..
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Permalink Reply by Joanne Hollett on
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Thanks Joanne. Interesting it says it's effect is similar to caffeine and many OSA sufferers drink gallons of it.
Joanne Hollett said:
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thanks joanne good website that :) LOL@Kath,yep most people r relieved its sleep Apnea instead of them being boring!! lol..x x
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By 11 a.m. every morning I had drunk 4 mugs of coffee - and I take my coffee very, very strong... it got so bad that my boss at the time (a senior hospital consultant) used to jokingly warn people not to approach me until I'd had my 4th cup! Fortunately he was a very understanding boss and it was he who first alerted me to the possibility that I might have OSA 5 years ago. Unfortunately I ignored his advice to seek medical help until being diagnosed with type 2 diabetes last November. Had I heeded his advice I might have been spared the onset of the disease, but better late than never, currently my diabetes is controlled by diet and I'm hoping that now I've begun CPAP I'll be able to keep it controlled without having to start on medication. Also interestingly enough, since starting CPAP I seldom drink coffee at all... a fact that I had not realised until reading your comment... :-)
Kath Hope said:Thanks Joanne. Interesting it says it's effect is similar to caffeine and many OSA sufferers drink gallons of it.
Joanne Hollett said:
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Same here Joanne, but I have to admit still drinking a few more than is good for me on most days, but not for the same reasons. Hopefully your CPAP treatment will halt the progression of the diabetes and many people on the milder side of diabetes have actually had their condition reversed.
Joanne Hollett said:
By 11 a.m. every morning I had drunk 4 mugs of coffee - and I take my coffee very, very strong... it got so bad that my boss at the time (a senior hospital consultant) used to jokingly warn people not to approach me until I'd had my 4th cup! Fortunately he was a very understanding boss and it was he who first alerted me to the possibility that I might have OSA 5 years ago. Unfortunately I ignored his advice to seek medical help until being diagnosed with type 2 diabetes last November. Had I heeded his advice I might have been spared the onset of the disease, but better late than never, currently my diabetes is controlled by diet and I'm hoping that now I've begun CPAP I'll be able to keep it controlled without having to start on medication. Also interestingly enough, since starting CPAP I seldom drink coffee at all... a fact that I had not realised until reading your comment... :-)
Kath Hope said:Thanks Joanne. Interesting it says it's effect is similar to caffeine and many OSA sufferers drink gallons of it.
Joanne Hollett said:
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