Advice wanted for new CPAP user

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Permalink Reply by Kath Hope on December 30, 2011 at 23:48

So pleased you've found us Gina, and I wish this help had been here when I struggled at first.  Check out My Story on the main website.  Is it Castle Hill where you're been treated?  I noticed from Facebook that you're from our area.

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Permalink Reply by Terry Vella on December 31, 2011 at 6:04

Gina, keep going, your husband is right and sounds supportive which is a good start. He may not understand your frustration. What are your issues are they leaks from the mask or other reasons.

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Permalink Reply by gina on December 31, 2011 at 18:18

yes it is castle hill that i am been treated from  x

 
Kath Hope said:

So pleased you've found us Gina, and I wish this help had been here when I struggled at first.  Check out My Story on the main website.  Is it Castle Hill where you're been treated?  I noticed from Facebook that you're from our area.

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Permalink Reply by gina on December 31, 2011 at 18:21

i arnt sure what the problem is some of it is in the mind i think and the discomfort of the mask some times it leaks but that seems to be if i fall asleep
Terry Vella said:

Gina, keep going, your husband is right and sounds supportive which is a good start. He may not understand your frustration. What are your issues are they leaks from the mask or other reasons.

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Permalink Reply by Terry Vella on December 31, 2011 at 22:07

Gina, the mind is a difficult one for us to help you with, the mask is a lot easier, first what type of mask do you have Full Face or Nasal mask or Nasal pillow. I have a Full Face and use mask liners which help. Do you have the hose coming from above your head either from the top of the bed or on a hose stand. hat will assist you dramically as you won't get tangled and will reduce your leaks as the pressure on the mask is being pulled up instead of down. Have you tried any other masks as there is not one size that fits all. You will also need to do some re adjusting of the straps. I will take you a while to get everything sorted out so be patient. I look at it as a marathon not a sprint. I took me about six months to get everything right and on the odd night something wil still go wrong, it's not perfect science. Keep going and try some if not all these things. I'm sure Kath and others with give you more advise and tips.

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Permalink Reply by Kath Hope on January 1, 2012 at 22:29

It's often difficult to get started on CPAP Gina, as it doesn't feel 'normal' trying to sleep with a mask on your face does it?  This is made harder too when we have to accept that it's for life.  However, once you get into the treatment and start to feel the benefits, acceptance normally kicks in, and you reach a place where you actually don't want to sleep without it.

We are very lucky being treated by Castle Hill as the team there are very supportive.  Whilst there are a lot of good clinics around the country, there are also some bad ones.  Our nurses give up their own free time to be on the Support Group Committee and their imput into the meetings help make them so successful.  If you're struggling with the mask tell them as they'll let you try others.  Also, when you've got over the christmas expensive, I (and many others on here) would highly recommend the Hose Lift, and this help tremendously with preventing the leaks which happen with tossing and turning as it stops the hose dragging.

Shout out for any other problems you're having.

gina said:

i arnt sure what the problem is some of it is in the mind i think and the discomfort of the mask some times it leaks but that seems to be if i fall asleep
Terry Vella said:

Gina, keep going, your husband is right and sounds supportive which is a good start. He may not understand your frustration. What are your issues are they leaks from the mask or other reasons.

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Permalink Reply by Mike Spicer on January 2, 2012 at 16:34

Gina, how many nights have you worn the mask now?

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Permalink Reply by gina on January 3, 2012 at 20:57

thank you Kath and Terry  i have a full face mask as i normally breath through my mouth i put the hose over the back of head board this mask is the only one i have tried and i am going to give it till friday and if i continue like this i will have to go back to the hospital i have been reading all sites about cpap trying to get any tips.the mask does not seem to seal unless i have it tight and then this hurts my neck ive tried to put mask on and then pull mask away from face to try and get a seal . the mask seems to go to far down my face right to the bottom of my chin so when i open my mouth the seal goes . yes kath the nurses at CHH are brill and i know they would help but dont want to bother them if possible the first week i managed 45 hours sleep with mask on but in the last week i will be lucky if ive managed more than 2 hours a night and those 2 hours i am awake for untill i take mask of then i sleep i then put mask on again when i wake up but again cant get back to sleep . so i am really struggaling as need some sleep as i work as well x thank you all for your help

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Permalink Reply by Kath Hope on January 3, 2012 at 22:52

Gina, needing a full face mask (like I do) is always worse, as we have to get one that suits a larger area of our faces which isn't always easy.  Some people hit gold straight away, but most don't.  Which mask is it you're using at the moment?  My guess is that it's either the Resmed Mirage Quattro or the Resmed Quattro FX?  Our nurses will not mind if you contact them to try a different mask as they're a super team and pull out all the stops to help us.  We are very lucky :)  Catherine had no end of patience with me and Sheran brought in different masks for me to try!  If you're like me I felt like I was getting less sleep at first than before I got the CPAP, but once you get the teething issues sorted out, I promise you'll accept everything better when you experience quality sleep.

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Permalink Reply by Terry Vella on January 4, 2012 at 8:56

Gina, You may also want to check what size it is as there is small, medium and large. Also mask liners will also help. You do have to have them reasonably tight, I have never been able to get a seal with a loose mask like the websites say.

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Permalink Reply by gina on January 4, 2012 at 18:54

yes Kath i am using a Resmed Mirage Quattro size medium i managed 4 hours with the mask on last night 2hours sleeping2 hours trying to sleep this is a little better i am ringing CHH tomorrow cos this is making me ill very tearful and hurt all over so fingers cross may helpx

Kath Hope said:

Gina, needing a full face mask (like I do) is always worse, as we have to get one that suits a larger area of our faces which isn't always easy.  Some people hit gold straight away, but most don't.  Which mask is it you're using at the moment?  My guess is that it's either the Resmed Mirage Quattro or the Resmed Quattro FX?  Our nurses will not mind if you contact them to try a different mask as they're a super team and pull out all the stops to help us.  We are very lucky :)  Catherine had no end of patience with me and Sheran brought in different masks for me to try!  If you're like me I felt like I was getting less sleep at first than before I got the CPAP, but once you get the teething issues sorted out, I promise you'll accept everything better when you experience quality sleep.

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Permalink Reply by gina on January 4, 2012 at 18:57

thanks terry i try it all ways  going to see about going back to the clinicx

Terry Vella said:

Gina, You may also want to check what size it is as there is small, medium and large. Also mask liners will also help. You do have to have them reasonably tight, I have never been able to get a seal with a loose mask like the websites say.

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