Tuesday night was horrible. I managed to sleep to 12:30am before the CPAP machine ramped up the pressure so much that the mask was blowing raspberries on my face again. Try as I might, I was so angry with the thing that I simply couldn't get back to sleep, and by 1:25am I was downstairs feeling frustrated, miserable and suicidal.
So, wide awake in the small hours of the morning, I did some web searching about why my CPAP experience was so horrible. It turns out that thousands of CPAP users absolutely hate their machines but persevere because of the ultimate benefits. Loads and loads struggle horribly in the early days and many give up entirely.
But perhaps the BEST thing I discovered in my Long Dark Night Of The Soul was the secret code that lets me into the settings of my machine; the Konami Code of CPAP. Once inside the Clinical Menu, I was able to turn on the advanced features to display more information on the home menu: Useful things like the maximum and minimum pressures, which otherwise do not appear anywhere on the system or daily reports. Finally, I was able to actually see that the maximum pressure was set to 15psi. No wonder the mask was blowing off my face! When I'm doing water rockets in school, I launch them at 15psi, so I know that's a lot of force over a small area. Is that a normal level to start at, I wonder. The consultant had explained that my apnoea isn't severe or life-threatening, so I wouldn't expect it to be high. But I would trust the technicians that they had it set correctly for me. The level can go right up to 20 - which would be enough to breathe for me. But I don't need it to do that, and I don't need 15psi lifting the mask off my face like a hovercraft. I turned it down to 12psi and managed to get in two hours of sleep before being woken by the alarm clock.
Thanks to friends who came forward with their own CPAP information. I discovered that a couple of them with really bad apnoea only have their machines at 10 or 13psi. 15psi is way too high for me. Thank you, Keith and Taj!
Last night I turned the maximum pressure down to 10psi and strapped in to see what would happen. And what happened? Seven and a quarter hours of sleep is what happened. FINALLY! No ripping off the mask in frustration. No disturbed sleep. Waking up with the alarm feeling okay. I scored 100%
So now I have a dilemma. The machine was pre-set to 15, but I've tinkered with it. Do I tell the Sleep Centre? They were supposed to be managing this for me but wouldn't reduce the pressure when I asked them to. Clearly the setting was way too high, but did the Consultant actually prescribe that, or is that just the machine default and the technicians have made an error? They have booked me a call from a Senior Technician towards the end of September, postponing my next call with the Consultant which would have been in two weeks time. Should I confess that I've changed the settings myself to the technician, or should I ask to speak to the Consultant first? Based on the negative response from the Technician I spoke to earlier this week, I really don't want to speak to the technician unless I really have to. My trust in them has evaporated. But maybe only after one successful night I'm being too quick.
I think that I'll leave things as they are for a few more nights, and see how well I do over this week. But for today, the pressure is off.
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