Just got my CPAP Machine, and really ... - Fibromyalgia Acti...

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Just got my CPAP Machine, and really struggling :-(

66Amanda66 profile image
16 Replies

I was diagnosed a few weeks ago with Chronic Sleep Apnoea,to add to all my other problems, apparently when they did the sleep study i stopped breathing on average 84 times an hour for at least 10 seconds or more!!!! The nurse said i was one of the worst they had seen.

Now i have my new CPAP (continuous positive air pressure) Machine, im really struggling with it, it leaks around the mask, but if i tighten it too much it hurts and leaves horrid red marks all over my face. And my hair! well i look like ive been dragged through a hedge etc when i wake up.

Its so cumbersome and it fits right over the top and around the back of my head and the mask bit goes over both mouth and nose, its really difficult to wear and i cant get used to the noise either.

Im hoping and praying it will get better as i get used to it, MOAN OVER

Sometimes i think we just need to get our problems off our chest dont we xx

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66Amanda66 profile image
66Amanda66
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16 Replies
jazher profile image
jazher

Hi amanda,

I think a good moan does us good, so i hope it helped. :)

I do know that there are others with these machines on here so i hope you can find them or they find you for some advice hun.

It will take some getting used to but it sounds awful, i hope it doesnt take long to get used to it.

sending you hugs, kel xxxx

66Amanda66 profile image
66Amanda66 in reply to jazher

Thanks Kel, i agree a good moan can help lol xx

LindseyMid profile image
LindseyMid

Is that the only option available to you? I believe there are now far smaller CPAP machines out there, but whether the NHS does them is of course a different issue.

It might be worth asking if the clinic could suggest a different mask shape or size.

gloglo profile image
gloglo

Hi Amanda;

i too have a Cpap machine for my apnia. now as for the leaking around the mask as linsey said its because the mask may be too big for your. what you need to do is go back to your respiratory clinic and let them know you are having problems with it. they will try you with a smaller on. but also it takes a while love to get use to it i have had mine now for about 6-7 months and i still not totally use to it even though i do not have the problems you are having some nights i can't use it at all i'be been told just to continue with it i will get use to it. thing is i don't want to get use to it i don't want another thing that i have to be dependent on but i have no choice lol. Anyway love give the clinic a call and they will have you in to check it. Xxxx

66Amanda66 profile image
66Amanda66

Thanks lindsey and Gloglo ill ask them about a smaller mask when i go, but the nurse did measure me for the mask i have ? ill keep trying, ive only used it for two nights so far, thanks friends, xx

hope it get better for you it must feel very strange maybe in few weeks it will be ok i hope so if it helps you and dont worry about moaning its fine we all have our moments on here love diddle x

lynz profile image
lynz

oh i do hope you get used to it ,

it must be awful to start off with , :(

hopefully if you do get used to it you may get better restful sleep :)

gentle hugs xxxx

66Amanda66 profile image
66Amanda66 in reply to lynz

Thanks hun xx

quine profile image
quine

hi i have a CPAP machine too and have similar problems to what you describe a few things you may want to try are testing to see if you have actually got the mask on too tight to start with the air pressure fills the surround of the mask too, this is to cushion the pressure on your face (acts like an inflated balloon). you may also find that a smear of vaseline round the seal, this helps secure the seal , some folk find this helpful i used this till i got right into the way of it . There are different masks too and if you dont feel comfortable with one then by all means ask for a different type usually the nurses at the sleep lab are very helpful so phone them for advice.

i remember when i first got my mask etc i thought i was going to suffocate and was panicking the nurses helped me over that

hope you get on ok because it will make a difference to you. hope this helps

soft hugs xx

66Amanda66 profile image
66Amanda66

Thanks Quine, i have phoned the clinic and am waiting for them to get back to me,

i had a terrible night last night, the mask seems fine then when i drift off to sleep im woken by a leak around my right eye every time. will wait and see what they say, cheers xx

buzzing033 profile image
buzzing033

hi amanda, i have apnea too and was given cpap, but after so many problems with the mask and feeling like i cant breath i gave up with the whole thing.i was getting less sleep than when i started trying to use it and when you already have severe sleeping problems already it just wasnt funny anymore. i hated the darn thing the whole time.hope this hasnt worried you even more. debbie x

66Amanda66 profile image
66Amanda66 in reply to buzzing033

Oh thats a shame, i have just received a smaller size mask as the first one kept leaking, so ill try that tonight and see how i go on.

I agree It is a really difficult thing to get used to, but im gonna give it another go, were all different i supose, best wishes xx

secretldy profile image
secretldy

I went on a CPAP machine a month ago, all i have is the nose bit, it does leave marks, but all i do is if i;m going out i get up extra early so that the marks will go before i go out. my CPAP doesn't make a noise either it nice and small, has a clock on the front, so i use it as an alarm as well.

where did you go for yours?

i have apnea and hypopnea (oxygen level in my blood drops), i have quite a bit of pressure as well

66Amanda66 profile image
66Amanda66

Hi i have the full mask as i tend to breathe through my mouth at night when my nose blocks up, it does leave marks but they seem to fade within an hour when i get up.

Apparently i stopped breathing 84 times an hour on average for at least 10 seconds, so i have it very bad, my pressure is set very high as its that bad.

Im managing about 5 hours on the machine at night then i wake up and its horrible, but will try to increase as i get used to it.

jpboyd profile image
jpboyd

Please call your Dr immediately and request a new mask! The modern ones fit nicely over the nose and top of the head. If your mask fits properly, there is no noise. I have had mine for over 10 years and it was the biggest steps in getting a good nights sleep and relieving 50 % of my pain! I would not be without it! Be patient. Get a new mask and have the nurse help you adjust it. Good luck!

Kapalua profile image
Kapalua

Hi, I also use a CPAP machine and had problems finding the best mask for me. I ended up getting a Phillip's Respironics mask, model DreamWear. It has under nose nasal pads and fabric wraps which prevent most of the red marks. I live in Canada but am sure it will be widely available. My machine gives daily readings regarding leaks etc and I have had no leakage. You will get used to it, maybe use earplugs to combat the noise. Hope this helps.

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