"Hi
The SleepCube was a private purchase, as way back then my local sleep clinic assessed patients by filming them overnight, whilst wearing an oximeter, and only issued CPAP machines without humidifiers. There was no remote monitoring and…"
Sleep Apnoea Forum Bringing Help + Support to the Patient
Symptoms: Feeling tired with missing air.
Hello everyone, it is my first post here.
I'm living in london.
I have been diagnosed with severe sleep apnoea and severe lack of oxygen.
I have started the therapy since December 2016.
I one big question related to the story below:
I have started my therapy using a variable pressure machine. After 2 weeks, my setting where found to be 11.2. So then they give me a CPAP machine with air humidifier.
Until february, I was sleeping good/perfectly, sometimes waking up because of mask seal, but when I was waking up on the morning I was fully energised. Like jumping out of the bed, being happy and so on.
I was even sleeping sometime with 0 L/min pressure leak. (rare).
Since February my sleep has degraded, I still don't fall asleep during the day, my brain is functioning normally at work however but I don't feel fully energised like the first 3 months and my general mood has degraded as well.
I have as well since Feb, raise the setting of the humidifier from 4 to 6, as before at 4, I was dribbling saliva in the mask (in my mouth), and since now I wake up on the morning with dry lips or dryness in my nose. I can't put the setting at 8 (maximum) because after the water start to condensate around the valve (clapet) before the mask and it start whistling, waking me up.
The 2nd things I noticed, it is that the air flow seems less important as soon as I start the machine. Before it would flow in my mouth while breathing with my nose with the mouth open and now it barely flow on the lips. It is like the air is still pressurised but I get less air in.
Unless my body got use to the air flow and now my airways do not open so easily.
The 3rd thing, is from the myair screen, since I monitored the changes, I never reached again a 0 l/min the best I can do is 1 l/min when I m sure at 100% I don't leak during sleep.
However, my event per minutes are still around 0.X and 2 max.
I don't what to do, I have already spoke about that to the nurse and she has given me a tube that heat the air to avoid condensation but the connection between the valve and the tube leak a lot of air and after a week using it I started falling asleep at my desk.
Should I request an oximetry, a swap of machine? or maybe ask for test again the variable pressure one?
or maybe this normal?
Thanks a lot for your help.
Views: 281
Replies to This Discussion
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Permalink Reply by Kath Hope on
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Sorry for the delay SleepGuy and sorry to hear the good initial benefits you felt seem to have slipped. Sometimes this can happen, because the difference from living with severe sleep apnoea to getting good safe sleep seems such life-changing, but then people get used to this feeling so start to notice remaining symptoms. It could be that there is another underlying problem, but it also could be that, even though your therapy is good, you're getting interrupted sleep through the humidification problems. Also are you getting a good 7-9 hours sleep every night as that can make a big difference?
The issue with you thinking the air flow isn't as strong will be because you've got used to the pressure. Many of us even pull the mask away from our faces to check the air is flowing and are surprised to hear it is, as we get so used to the pressure.
Your leakage is very good at 1 l/min. Not many people get a zero. You could try a mask liner to help with the leaks that disturb your sleep http://www.hope2sleep.co.uk/silent-night-mask-liners.html
Can I ask if you started to struggle when you were changed from variable pressures to fixed CPAP pressures?
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Permalink Reply by SleepyGuy on
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I have started the cpap therapy in jan and the symptoms was back in march. I do sleep between 7 to 8 h every nights. So I got it for the body to get used to the air flow. However that's still a huge difference that I have from the first 3 months in term of energy and hungriness.
Anyway I m in touch with the hospital I will see what they can do.
Thanks
Sleepy guy
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Good luck with your appointment SleepyGuy. There are occasions when some people are better an auto pressures, but bearing in mind your AHI is below 5 and you're getting a good 7-8 hours of sleep on CPAP, it may be worth you asking your GP for blood tests for diabetes, hypothyroidism, Vitamins B12 + D, as these are all linked with sleep apnoea. Let us know how you get on.
SleepyGuy said:I have started the cpap therapy in jan and the symptoms was back in march. I do sleep between 7 to 8 h every nights. So I got it for the body to get used to the air flow. However that's still a huge difference that I have from the first 3 months in term of energy and hungriness.
Anyway I m in touch with the hospital I will see what they can do.
Thanks
Sleepy guy
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