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Hello Everyone
#1
Hello Everyone
Hi all
 
Firstly, a big thank you to everyone who has contributed to this forum!  I've come back countless times to read up on the various hurdles with CPAP and picked up some fantastic advice.
 
I'll try not to make this "War and Peace" but here’s my CPAP story so far...
 
Around 2005 I was diagnosed with Sleep Apnea by a sleep specialist. I was having problems with tiredness, never feeling refreshed and huge difficulties with getting up in the morning.  My daytime tiredness wasn't severe enough that I was falling asleep during the day but the overall feeling of tiredness was getting me down and my lateness to work was causing real problems.
 
Although I was diagnosed, the support provided by the hospital was somewhat lacking and after around a year I decided to take the matter into my own hands and buy myself a CPAP machine.  I ended up with Tyco GoodKnight 420G and what looked like a run-of-the-mill nasal mask.  iI did my best to persevere with CPAP but the mask was causing me major problems.  Pressure marks, acne and sores were not something I wanted - especially not in my early 20's!  After around 6 weeks I gave up.
 
I'd come back to CPAP every now and again over the years (often prompted by girlfriends due to the fact my snoring could be heard 3 floors up in my house!) but I'd always give up after a few weeks due to mask discomfort.  Over the time I also tried another mask - the Fisher and Paykel Infinity 481 nasel pillows.  No pressure marks or acne with this one but really sore burning nostrils.
 
Earlier on this year whilst on holiday with my wife, I woke with a message on my phone.  "We need to talk about your snoring" sent at 2AM from my wife.  This kickstarted me to dig out my CPAP machine and try again.
 
First night with CPAP this year was amazing!  Set at a 6 I woke up feeling better than I could ever remember, albeit with sore nostrils and better than I'd ever felt with CPAP.  My machine was a little tired and over the next few nights I found it had a turbine issue which started to turn the machine off and on intermittently.  I found a guy on Gumtree selling a Resmed S9 Autoset for a very reasonable price and found my sleep was even better.  I replaced my mask with the wonderful Philips Dreamwear and got even better results.  My AHI was almost aways between 0-1 and I always felt great. 
 
But then things started to change after about 2 weeks....
 
My consistency in getting AHI's between 0-1 started to drop off and I was starting to get more AHI's of between 1-2.  Arguably, still not a bad score.  But whenever I get an AHI above 1 I wake up feeling terrible and feel groggy all day. 
 
So what's happened?  I'm not sure.  I’ve increased my minimum to 7.4 which is still really comfortable, decreased my maximum to 13.6 and started using tape over my mouth to stop mouth leaks (this is somewhat successful).  In general, my leaks don’t seem to be too bad.  I very rarely get mask leaks and I find it super comfortable.
 
I’m trying to get myself another sleep study but this could take months on the NHS.  In the meantime, any advice from folk who have had a similar experience?
 
Thanks for reading.

Horses
 
 
 
 
 
 


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#2
RE: Hello Everyone
You picked up a nice machine with the S9 Autoset. At 7.4 to 13.6 your results are very much within reason. For comfort purposes you might want to experiment with the exhale pressure relief (EPR) which can provide 1 to 3 cm of pressure relief during exhale. In your case, I think I would increase minimum pressure to 8.0 and try EPR at 1. This will leave your starting exhale pressure about the same. Your median pressure now is 8 to 9 cm, and 95th percentile pressure is 10 to 11 cm. I think that is actually close to your ideal range, so I think a small increase in minimum pressure and no change in maximum pressure is pretty well suited to your needs. You have been doing this for a long time, and your self-titration has worked very well considering these results. Your leak rate is very good, so I don't see a problem there. The EPR is there for you to try. Keep in mind it could increase CA events until you get used to it, so don't be surprised, however the objective is to improve comfort and sleep quality.
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#3
RE: Hello Everyone
Hi Sleeprider

Thanks for the advise. I was actually considering inreasing my minimum to 8 but never really considered the EPR.

I'll give it a go and see what happens!
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#4
RE: Hello Everyone
Wait a few days to see what happens and keep your mask etc the same, some people change things around and this just confuses things.
>^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^<
I am NOT a doctor.  I try to help, but do not take what I say as medical advice.

I am just a long term user of c.p.a.p. and therefore I have some experience in using these machines and equipment.

However, I am NOT an expert, so advice given should be taken as given in good faith only and NOT medical advice.

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