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CPAP use problems - still having a poor nights sleep
#1
CPAP use problems - still having a poor nights sleep
Hello fellow CPAP users,

I recently came across this site, and after a bit of um-img and ah-ing, decided to register and sign up last week - so a new kid on the block!

I would really like to have some advice / recommendations from fellow CPAP users out there of a problem I cannot seem to get to the bottom of...


I am not new to CPAP, but just a bit of background...

I was first diagnosed with Sleep Apnoea back in 2002 here in the UK, and what a horrible and primitive treatment experience it was back then. I went through 2 different manual CPAP machines, used with humidifier / without humidifier, 7 different masks (different makes, full face, nose mask, air pillows, etc), visits to the Hospital every 2 months and them setting the pressures up, then down, then up again, etc,etc, etc... It went on and on...and I can never really say I got on with it. Noisy machines, noisy mask, cold air, air leaks...sound familiar? But it allowed compliance / satisfied the Driving Authority and my work (!)
Finally in 2004, they offered me a trial on an Auto CPAP machine...an improvement, but still difficult to use in practice. I could not at that stage have one on the NHS so I bought one from ResMed (AutoSpirit 6) and a ResMed Mirage Ultra mask, which was the cutting edge at the time.

Then in 2005 a small miracle: I lost quite a bit of weight - and when the data recorded on the machine was checked at a visit to the hospital, they gave me the "all clear", and that my apnoeas had reduced to a level that I was considered not in need of the CPAP anymore....big yay I can tell you.


Time moves on, weight comes back on -  earlier this year (2017) I was re-diagnosed as having Sleep Apnoea again (!)...groan!

And so much has changed, and most for the better - I was given the ResMed AirSense 10 Autoset (so quiet compared to the "steam driven" ones of the past), c/w the HumidAir Humidifier, and with the AirFit F20 full face mask. Still the cold air and air leaks but this time around there are solutions - reading up on it, ResMed do a "heated pipe", ordered one, brilliant, yes problem solved. Air leaks - always been a problem as I naturally have a greasy skin (I can clinically clean my face before bed and it will get rid of all the grease, but 2 hours later...hisssss!), but now there are mask liners available that do seem to help with this - not 100% but a good step in the right direction.


So now I can just close my eyes, off to sleep and let the equipment do its thing, and I wake up perfectly refreshed in the morning having had a good night's sleep? NO.....


I drop off to sleep reasonably ok, but wake up just as tired as if I haven't slept properly at all...(?) I am aware of having woken up usually a few times during each and every night, and am aware that the machine is pumping quite a bit of pressure through to me each and every time this happens. I haven't got a clue why this is happening, and like the rest of us, all I want is to have a regular good night's sleep.

Anybody been through this, and any ideas what is happening or what to do about it, or try...? Dont-know Any advice would be so welcome.


Best regards,

Marcus.
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#2
RE: CPAP use problems - still having a poor nights sleep
Hi Mistletoe

Welcome to the forum. You are a veteran to CPAP compared to a lot of us.

The Resmed machines are seriously good. You are lucky to be given the Autoset as I was dispensed the Elite which is a fixed CPAP but have purchased the Autoset For Her recently myself, using the CPAP as back-up machine. Your profile says your pressure is auto. Do you mean that it is from the lowest of 4 cm H2O to 20 cm H2O?

Many will ask you to download Sleepyhead and post some data so that the experienced guys here could help to interpret.
Sleepyhead in 5 easy steps
Beginner's Guide to SleepyHead

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
RE: CPAP use problems - still having a poor nights sleep
Many have been through this goshawful tiredness even after therapy starts! Maybe even the majority. Quality treatment can take a fair amount of fiddle, but you're in the right place!

The best approach is to download SleepyHead, pop an SD card into your APAP machine, use a card reader so SleepyHead can download your night's data, and then show off your charts here. No doubt, one of the muckety mucks will show up shortly with handy dandy links to SleepyHead instructions.....
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#4
RE: CPAP use problems - still having a poor nights sleep
Hi mistletoe,
Welcome to the forum.
Do you know what pressures your machine is set for?
They surely didn't give you the machine and allowed it to find what it wanted to go to.
Fine the high pressure being open, but it is a lot more comfortable if the low is higher than 4 and a bit closer to the pressure you require.

Your machine is data capable so you can remove the card and read and upload the data to sleepyhead then upload it here for advice.
When I used a nasal or full-faced mask I always found it loose during the night as if I had shrunk.
I gave up and moved on to Nasal Pillows with a chin strap and do not have much leaks these days unless I knock it off or have a slight leak through the mouth.
Is it the mask that is lifting off and the machine rising in pressure?

Even when I have knocked the mask off like last night the machine does not rise that much, it goes up, then appears to know I am not on the other end anymore and steps down again.

I think you need to upload data for others to see what is going on.

It may appear that there is a lot of pressure, but what does it say it has gone up to on your machine after a night?
I am NOT a doctor.  I try to help, but do not take what I say as medical advice.


Every journey, however large or small starts with the first step.

Sleep-well
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#5
RE: CPAP use problems - still having a poor nights sleep
Hi mistletoe,
WELCOME! to the forum.!
Better luck to you this time around with CPAP therapy and here is the link to SleepyHead.
Hang in there for more responses to your post.
trish6hundred
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#6
RE: CPAP use problems - still having a poor nights sleep
Hello again, and thank you to all that posted back to me - I had to laugh at the "veteran" bit, but I guess I do fall into that but not necessarily with the knowledge!

Downloaded "sleepyhead", read my data into it, and lots and lots of statistics and graphs, but I have to say I'm none the wiser although for sure, a step nearer...

How do I upload it to the site so that I can get some help interpreting it...not sure how to...?

M
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#7
RE: CPAP use problems - still having a poor nights sleep
Follow the links below and it will explain it.

Welcome!
Download SleepyHead
Organize your Sleepyhead Charts
Posting Charts
Beginner's Guide to SleepyHead
Mask Primer
5
Advisory Members serve as an "Advisory Committee" to help shape Apnea Board's rules & policies.

Membership in the Advisory Members group does not imply medical expertise or qualification for advising Sleep Apnea patients concerning their treatment.



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