New CPAP user needs a bit of help

[Sarah37]

Hi everyone, I'm new to all this CPAP stuff and I need a bit of help.
After the birth of my 4 year old I was diagnosed with an under active thyroid
as well as diminishing memory loss.The memory loss has been getting worse over the 4 years and after many MRIs and memory tests etc etc I had to go to Royal Marsden hospital for a sleep study as a last result.
I was then diagnosed with sleep apnea as my throat closes nearly all night and they were amazed I was still around
I'm now on my 5th night and I haven't had more than 3 hours sleep per night, the mask is fitting well, there's no leaks although I can only feel the air if I open my mouth (and then I get this rush of air coming out) I feel 100 times more tired than I have been feeling, I'm grumpy, falling asleep everywhere and I feel so dizzy and sick with tiredness that I don't know if I can carry on as it's not safe for me to be aorund the kids or in a car. I haven't felt this bad since the kids were babies.
Help please, am I doing something wrong? Is this usual

[James @ Intus]

Hi Sarah,

It's not uncommon to initially feel worse. After a week or so, it tends to turn around.

Does your mask cover your nose and mouth? If so, can you actually breathe through your nose? By saying you only feel it when you open your mouth I wonder whether you are actually getting the full supply of air.

Also, the machine may have a data card your doctor can use to see whether it's actually working during those 3 hours. If it is, you will actually benefit, even though you don't notice it yet.

Any more details such as your Apnoea Index etc. may also help us to get a better picture of your case.

[Sarah37]

Thanks James.
It's a nose mask so I can only breathe through my nose otherwise I get that awful rushing of air through the mouth.

Will persevere.
Thanks again

[James @ Intus]

Is there anything in particular which causes you to wake up?

[Sarah37]

It's more a case of not being able to get to sleep. The main thing is the air blowing out of the hole for expelled air. It doesn't matter what way I put it, there's always a gale blowing somewhere on me. The mask is quite uncomfortabl e as well, also the noise of the air whooshing doesn't help either, although it's very quiet, I can hear the slightest hum of the freezer at night, so the air to me sounds really loud.When I do eventually fall asleep I wake up through the night as soon as my mouth opens and I feel like I'm choking, then it's a vicious circle.
I'm sure I just need to get used to it though.
I do think it's strange that I can't feel any air while it's on, but as soon as I take it off of my face there's a force ten gale (does that make sense?)

[jan ward]

Hi Sarah

I'm only 8 weeks into this CPAP thing and only just feel confident with it. At present I have two masks - a full face one and a nasal one like you have - and tend to alternate them. The full face is more comfortable as the output tends to go over my head and turning over is easier, but does tend to bruise my nose - that is getting better. I find the same as you with the nasal one the output air blows on me, this has been helped by one of those shaped pillows, and I have woken myself up with the awful noise of the air coming out of my mouth!

Its been interesting over the last two weeks as have had a cold and have had to use the full face mask, I just could not breathe with the nasal one. I am sure your sleep clinic would let you try a different mask, it really is trial and error. My first week, like you, I could have dropped off to sleep anywhere, but now have much more energy - give it time. You do get that you cannot be without your CPAP machine, even with a cold I have had very reasonable nights sleep, without the machine I would have been awake virtually all night.

Hope this helps.

Jan

[Sarah37]

Thanks Jan
That really has helped so much. I was thinking about getting a full face mask to try so now I think I will. It's getting slightly better but I'm still only getting about 4 hours sleep on and off, worse if the sprogs wake up)
Thanks again, will let you know how I get on.