Feeling deflated

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Permalink Reply by Sleep2snore on March 20, 2017 at 10:50

It has nothing to do with the mask weight, it is the size and fit that matters as well as how well it seals.

You are not on a high pressure, so there should be no real problem with a proper fitting mask of the correct size sealing.

However, there are things like mask liners and things that can help with this.  If you are a mouth breather that limits you to what you can use.  There is a Hybrid mask that has Nasal Pillows and also covers your mouth,  They are not popular, but some people that use them like them.  I have not tried them myself.  There is also a cloth type mask out there, but I don't think you will get them off the NHS, though saying that I read somewhere one clinic was using them, but only as a last resort due to cost.

I did read I think that you tried Gell Nasal Pillows, or did I not read it properly?

I found Nasal Pillows are better, however, they are sometimes not good to seal and I did hear the gell ones were a bit hard to seal sometimes.  I use old Nasal Pillows that I can't get now, but the pillows I can get as they are the same as another maker uses.  They give me a new mask when I ask for pillows as they can't give me the pillows on their own.  What a waste of money, the rest of the mask gets thrown as I don't like it and it is uncomfortable.  However, the point I was going to say was, though I use Nasal pillows they do not seal properly all the time so air leaks, but as these are the older type that part of the pillow goes into the nostrils it does not matter it they leak slightly as they just make a hissing noise.  I turned off the alarm on the machine so as it does not go off because it has found a leak.  I have more pressure than I need, so if it leaks it does not matter.  I am on 18 of pressure, might just be 16 if I were not allowing for leaks or maybe even less.

If you can use Nasal Pillows, why not try the style that part of the pillows goes into the nostrils.  Then if it leaks slightly it will not matter so much if you get the pressure put up slightly more.

Only problem with Nasal Pillows is it can annoy the lining of your nostrils when you first start.  But after a while this will stop.  No doubt someone else will be along with some other ideas.  How long is it since the seal was changed on your mask, as they can deteriorate and after a while will not seal properly.

There is also a mask that covers the whole of your face, but these are not common.

Kath will be along shortly if she has not beat me to it to suggest other things I have not thought about.

There are still a lot of options out there that you can use, but if you are not getting the support from your clinic it is like banging your head against a wall.

Is there another clinic near you that might give you better support.

Sleep Nurses are usually quite good, but I have heard that some are not up to speed like they should be.

Trouble is that a lot of the people that are advising you do not use the equipment so do not know how frustrating it can be when things are not going well.

I think it is a bit pathetic that they asked if you wanted to be discharged!

The other thing is that if you tighten the mask to tight it will tend to leak.

It is a bit of trial and error to get a mask to seal properly without leaking.

http://www.directhomemedical.com/adam-circuit-cpap-mask.html

This is the type I use but I can no longer get them here, these adjust in all directions.

The NHS Sleep Clinic at Aberdeen would like tto know if there is a supplier that still does these in the UK that they can get them from.

NOTE:  These masks have only one vent hole in the front and air blows directly away from you.

Shame I can't get them anymore!

I wish you good luck in finding a solution to your problems.  I know it is not easy when you hit the wall, but do not give up, keep trying everything until you you find something that works for you.  It took me a long time to find a mask that worked and I ended up with a better selection than some Sleep Clinics in the end.  So do not give up.

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Permalink Reply by Jayzee on March 20, 2017 at 20:13

Thanks Sleep2Snore for your info. Just to update you I have been back to the sleep clinic today where the sleep nurse called her manager in who has a wealth of knowledge when it comes to masks etc. He saw me put the mask on and said I was fitting it correctly so that wasn't the reason for the leaks. It was brought up to the pressure of 15 which it is set to and sure enough it leaked! He played around with it on my face to see the fit was incorrect.

I have now been issued with a mirage liberty mask which has the nasal bungs as well as the mouth mask. We had a lot of laughs when fitting this especially when he asked the sleep nurse what size she thought my nostrils were for the bungs...of course she said medium he said small so we went medium and it leaked so reduced to the small for a perfect fit. I did say that I felt the nurse was saying I had a big honk especially cause the full face masks didn't fit properly and her saying my nose was a medium size pmsl

So here goes tonight trying the new mask. This will I feel take a little while to get used to as I don't like things up my nose but this is for my own good and to prevent any further problems with sleep so I can do this.

I am feeling much more positive today after seeing the sleep nurse and her boss, so I will keep you all posted on how it goes xx

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Permalink Reply by Kath Hope on March 20, 2017 at 22:31

Hi Jayzee.  I spotted your post this morning but didn't have time to reply.  However, it's good to see that during the day you've made good progress at the clinic and hope the new mask helps.

I was NOT impressed that it was suggested you be discharged by the clinic!! So glad you didn't take up that worrying suggestion.  I would also hazard a guess that it wasn't just the fact the pressure needed raising, but also you weren't getting good therapy with all those leaks.  Hopefully, the new mask will help and also the raise in pressure.

Your poor daughter is a concern too and I would take her to your GP and nip this in the bud as to what's at the bottom of this.  Also, bear in mind that sleep apnoea does run in families so check she's also not suffering from sleep apnoea herself, which can cause depression in young children.

Let us know how the new mask goes and how you feel after a few nights with it.  Good luck x

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Permalink Reply by Jayzee on March 20, 2017 at 23:15

Hi Kath

My daughter is suffering with childhood depression and anxiety disorder which is a constant battle. I have been at loggerheads with the doctors who say they can only refer her for therapy and can not prescribe any medications but won't refer her to a specialist at the hospital for extra help. Many people say CAMHS are really good but I've had two dealings with these and both times they have washed their hands of her and said they won't help her due to it not being the correct support she needs. Without another rant going on about this situation I am curious in your statement about sleep apnea being hereditary. In a child how would this be diagnosed? I am now thinking that her restlessness, constant disturbed sleep (not waking but not staying still more like a washing machine on a normal wash cycle, round and round constantly every night), tiredness upon waking or not wanting to wake up when the alarm goes off (I know we are all like that some days lol)..could this be childhood symptoms? How would I approach this with the gp without sounding like a mum who worries about every little thing? I was told when she was three weeks old and got a very heavy cold that I was a worrying mum and to stop wasting services! I wasn't impressed and as a result I don't see that doctor anymore lol. I'd rather take her when she wasn't able to breathe properly than let her suffer and have social knocking on my door!

Any advice with childhood sleep disorders would be appreciated x

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Permalink Reply by Kath Hope on March 21, 2017 at 0:17

Jayzee most parents of children with sleep apnoea have a long battle to get them diagnosed sadly, and many of them get labelled as 'over anxious' parents.  Whilst not wanting to jump to conclusions, certainly the restlessness, disturbed sleep and tiredness upon waking are all signs of it.  Try to monitor her whist she's sleeping and see if she's breathing noisily and if you can hear pauses in her breathing.  See more about this on the main charity website http://www.hope2sleep.co.uk/sleep-apnoea-in-children.html

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Permalink Reply by Sleep2snore on March 21, 2017 at 8:04

You have been issued with the Hybrid mask that I mentioned above, if you can use this mask it should sort out your problems.  I hope it does not leak and that he checked the fit while you were lying down?

You may get a bit of irritation just inside your nostrils at the start, don't let this put you off as it will go away, though if I remember it did take a while for my nose to get used to it.  Hope this mask works for you and the pillows on top do not annoy you to much at the start.

Some Sleep Apnoea can be hereditary, this is usually due to the shape of the chin (recessed) or due to the shape of the throat.  If your daughter is on the plump side this might also bring it on.  There are more children with Sleep Apnoea than you would think, so do not rule this out.

Pauses in breathing is what to watch for while she is asleep.  It may surprise you but most people have pauses while asleep, just those with Sleep Apnoea have a hell of a lot more of them and usually lasting a lot longer.

You can if you have a Smart Phone, Tablet or iPad record her while asleep, though it depends how sensitive the microphone is as to how successful the recording is.  It needs to be placed as close to her as you can without the risk of damage to the phone etc.  You can show it as a graph in the morning and the instructions are on the webpage.

http://www.ralphsapps.com/snoreclock

Give it a try, it might give you the results you need to make doctors etc pay some attention if she does have it or you suspect she has.

Let us know who you get on with the mask and how you get on with your daughter.

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Permalink Reply by Jayzee on March 21, 2017 at 18:30

Thank you both for your info. I will look into her sleep pattern etc in next few weeks.

Sleep2Snore, it did irritate my nostrils and they were sore after removing my mask but tbh I will be keeping on this mask as it was great last night. Took a bit to get set up last night in the sense of positioning of the nostril bungs lol but once in correct place everything was fine.

Kath, can the moisture therapy cream still be used to prevent the nostrils and upper lip/chin area from being sore and red? xxx

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Permalink Reply by Kath Hope on March 21, 2017 at 18:33

You took the words right out of my mouth as I was reading about the sore nostrils Jayzee.....I was going to suggest the CPAP Cream. Lots of people us this with nasal pillows masks and I used to use it myself with the Liberty mask you have and the Hybrid which is similar. Here's a direct link http://www.hope2sleep.co.uk/cpap-moisture-therapy-cream.html and it's good to hear you had more success last night 

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