Hope2SleepGuide

Sleep Apnoea Forum Bringing Help + Support to the Patient

Welcome to our Forum - Feel Free to Introduce Yourself Here.

Welcome to the Hope2SleepGuide Forum, which is a service run by the Hope2Sleep Charity founded by Kath Hope with a marvellous team of trustees and volunteers. 

Kath herself has severe sleep apnoea and hypoventilation/hypercapnia, and has used CPAP for several years and is now on non-invasive ventilation.  Our trustees and volunteers are all either sufferers of sleep disordered breathing or clinicians/medics working in this field, and most importantly, we are all passionate in supporting (with empathy) others and raising awareness to help people live healthier and more energised lives.

 

Whilst we do not give medical advice, more often than not, with support, tips and knowledge, people can overcome any problems experienced with our therapy, and there is a whole page dedicated to this on the website http://www.hope2sleep.co.uk/tips-for-problems-sleeping-with-cpap-or...

 

Please come and join us, and don’t feel obligated to use your ‘real’ name if you prefer to remain anonymous as this is a public forum.  Don’t be shy in posting and sharing, as we’re all in this together and to help each other.

Best Wishes for good sleep!

Kath

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Hi Jacks

 

It might be best to persist with a full face mask but to try and find one which suits you.  Different masks suit different users.

 

In my case the hospital gave me an F & P mask which caused major problems with my nose bridge (similar to your experience).  They changed it for a Mirage Quattro which I still use.   I still wake up with the "usual" red mark on my nose, but this goes away during the course of the day and the skin recovers fully, ready for the next night.

 

I found that the best combination for me to avoid nose problems is:

 

1. Use a Sleep Comfort Strip underneath the mask

2. Use CPAP Moisture cream 2 or 3 times during the evening but NOT just before putting the mask on (it causes the Comfort Strip to slide too much)

3. Use Savlon Healing Gel each morning

 

I did try the liners, which many people swear by.  However in my case they proved useless!

 

I suggest you keep trying to find a mask that suits you personally.  It's a real hassle I know but press on. 

All the best.  John

You can rant all you like on here to lots of people who understand the frustrations ;) 

I'll keep my fingers crossed for you that the hospital have the Fit Life, and I should have pointed out that if you're a side sleeper (which I hope you are with sleep apnoea) then you will need to sleep on the edge of your pillow so the mask hangs over the edge.  That way it won't dig in your face.

By the way, Ebay won't allow the sale of masks on there as they reckon they're prescription items, which they're not in the UK, but I've tried telling them and they just won't change their minds :(  A 2nd hand mask club sounds a good idea though.

Hi again Jacks,

 

These masks are all different. There are lots of different sorts and I couldn't cope with the nasal pillow tubes on that mask! Either the little tubes got buried inside my nostrils or they stuck in and hurt me (depending on the size of tubes) .

 

There are full face masks with no little tubes to insert into the nostrils and I find that my one like this helps me to relax a bit (if I can bear the thought of sleeping less well in the process). This letsmy nose have a break from it all; the marks on the face go for a bit and the pressure on my gums is removed for a while (the pressure is also on my bridge - some of my teeth fell out whilst I was driving!!! yeek! and my gums get so sore! ) 

 

Then I return to the nasal masks but the gel ones (I have two) are much softer and seem to help me on occasion. The nasal one the hospital gave me (and insist is the only one they give out) works for me on occasion. I have made a different headgear for it and this is good. I sewed velcro to straps of a chin strap I bought cheaply on ebay and it is smashing compared to the horrible ones I have bought (loads of different ones on the different masks).

 

Last time I went to the hospital they were so interested in my home made straps that they gave me two more sets of straps to experiment with and cut around if I wanted to! I needed to because the one I had made stopped being so good when it started to stretch out of shape. (You need to have unlimited time, energy, motivation and creativity to really manage. Not easy if you are exhauseted!)

 

I am going to try to get some readings from my machine as well. The hospitals don't seem to encourage us to manage our conditions. They like to keep the control (or they believe they maintain the control) and as a result no-one ends up having it under control!   

 

I also have loads of health issues but as I am managing to lose weight since going on cpap (in quantity - it needed and needs to be in quantity because I had become gigantic and virtually disabled by the size and health conditions connected) and now it is all coming together but it does take time.

 

Once I started to get more than two hours of some sort of sleep at a time, I found I was able to stay on diet. Whilst I was really shattered all of the time, I couldn't do anything other than career from day to day and just about survive.

 

If you are still getting such short sleeps, the whole thing does sound like it is well controlled yet for you.

 

I haven't got my machine lower than the bed. It is higher than the bed. The hose bit that extends to my mask is short and I put the hose through the lift so that the longer bit is nearer to the machine than to me and I tend to leave the water behind in that bit of the hose as result.

 

If your room is cool then the condensation is certainly a factor. Hose huggies aren't enough. The temperature on the hose will fall and the humidifier will warm up the atnosphere you are breathing (something like that anyway). I keep my humidifier quite low because I found that when it turned up accidentally to quite high, I was drowning! Perhaps experiment with different settings on the humidifier rather than take another person's optimum? We all heat our houses differently and use different heights of furniture.  Perhaps try having different lengths of hose from the hoop on the hose lift to the mask. What mustn't happen is that the hose length there is so short that it disconnects with the mask when you move!!

 

Hope this ramble is helpful. LOL! (I also don't always make a lot of sense!)

Rosemary


Jackie said:

Hi Rosemary, so pleased to meet you :)

 

Thank you for the information, very interesting and I am open to any suggestions, help, advice anything !!!! if you can follow what I am writing please do not hesitate to point out stuff to me (I do not always make sense lol) anyone please feel free to comment - please.

I did get face fulls and nose fulls of water at times, occasionally I still get water in the nose pillows, which is horrible. I think this is because my nose is so cold ... the hospital said turn down humidifier and heating up ... which leaves me sooo dry (my medication drys my mouth out as well) and I cannot stand heating in the bedroom as I get burning sweats. So not helpful lol !

concession shutting window on colder nights and when extremely cold we put the central heating on for a very short while to take chill out.

I did try my machine on different levels, the hospital told me it must be lower than my head that was all. I have tried the machine in a drawer beside the bed (left open) and even a portable step, but found the drawer wasn't low enough as the hose drooped down and I got gurgling and blocking with too much water. With the step I pulled/knocked the machine off a couple of times, so I have ended up with it on the floor which is not ideal but seems to be the only way I can avoid the hose drooping.

My bed is very high and I have a lever which I use to help me move in bed and in /out etc and I use this when I can to support me when turning machine on/off, but I cannot always manage it so hubby helps.

I was told not to leave the machine running when not using it as it can damage it ??? so always have turned it off.

but do try not to get out of bed except for emergency loo - my sight is limited and struggle more with mask on.

The nose pillows do not seem to adhere at all lately and I get up with a miss piggy nostrels look as well.

The mouth part seems not too bad unless I 'sag' a certain way. I have tried the cream but things just slip around and the nose pillows shoot out even more quickly.

It may be the pillows are too small, but I did not have this problem at first with them.

this is only my 2nd mask - the 1st full face skinned my nose raw and bleeding and even with liners I could not cope, so got the resmed liberty from the nhs.

I don't know how many apneoas etc etc I am having now, not been told and I don't know how to find out - does the machine show? I was stopping breathing for upto 47 seconds a minute and having over 69 apnoeas an hour which was shocking to me- felt so ill though it did explain a lot lol. Doing better I know for sure, but still not having more than 2-3 hrs sleep and it is broken.

I was not a good sleeper before, but I have several health issues that contribute to this.

All in all it is a struggle, the CPAP does help definitely, but I feel I should be getting more out of it.

I go back to the hospital next tuesday the 22nd (Aintree hosp) so if anyone can offer me any advice on getting more help or which way to go with it I would really appreciate it.

hugs Jacks x

 

Hi Kath, John and Rosemary

I hope you do not consider this reply rude to just do one ... if so please let me know and I will not be naughty again.

 

Such a lot of interesting info here and ideas.

Rosemary, oh your poor teeth ... how horrible - and how creative with the straps - just wouldn't know how to begin doing that - I can make cards and things but I'm not a sewing/dress making person at all.

 

John - the liners did nothing for me. They either got almost swallowed or just pulled out of alignment completely.

Interesting point with the cream - will have another go with it that way.

 

Kath - on the base of my CPAP machine it does says something about USA restricted or something but UK none  - doh cannot remember properly, would have to look again, but back is killing me and I am not going upstairs until I have to do.

perhaps if more than one person has a go at ebay? I can see the sense of machines not being allowed, but accessories ??? Does resmed require a prescription for a mask only? What about a petition to ebay??? does ebid have the same restrictions?

 I will definetely have a go at getting that fit lite mask or perhaps similar from hospital. I do sleep on my side and use a feather pillow on top of a foam so that I can tuck the feather one under my face away from the mask but I do have to turn several times at least during the night because of the pain and I go on my back for a few minutes to raise knees a little to try and ease back.

 

I don't get too much marking on face with the liberty, but my nostrels make me look like Miss Piggy for a while when getting up.

The 1st mask  I think was I think quattro??? and I used to look like I'd been in a car accident lol. I just couldn't cope with the pain of that on my nose and the broken skin.

 

I've had a look at some different masks on resmed - okay ..... vented unvented??? sorry if being thick but what is the difference ? the only thing my brain is working on is the expellation of the air?

would unvented mean your partner doesn't get a freezing back???

Having the energy to 'twiddle' with things is a huge thing - finding the desire is almost as bad. To be honest, some days takes a lot of effort just to clean the mask and tank.

 

I know there isn't going to be a miracle cure sigh ... but at least I can try different things to help with comfort and adjustment.

Thank you to everyone view detailsI know I am not alone for sure :)

 

 

 

 

 

 

The mask is the key! Conquer it and you have beaten PAP.


That was very rude of you Jackie to reply to us all at once LOL!  Only kidding!  Crikey, with the exhaustion you're going through, any corners you can cut will surely help :)

Firstly, NO you can't have a non-vented mask as they're designed for people on ventilators not CPAP, so our sleeping partners just have to put up with it.  We have our discomfort, so why aren't they entitled do some as well LOL.  Besides, the breeze is nice on those hot summer nights :) 

Another option for you to try when you have your hospital appointment is the Hybrid mask.  It's very much like the Mirage Liberty, but has a chin support on the mouth piece and some people find the nasal pillows better.  Of course, like everything with CPAP, it's personal choice.

I'm all for people changing Ebay's minds about the masks.  I've tried at least 3 times.  They've even removed some of my comfort accessories in the past as they've seen the word 'CPAP' in the title :(  The problem they could come across is the fact that in the USA you need a prescription for a mask, so people across the pond may try to buy them from us.
Jackie said:

Hi Kath, John and Rosemary

I hope you do not consider this reply rude to just do one ... if so please let me know and I will not be naughty again.

 

Such a lot of interesting info here and ideas.

Rosemary, oh your poor teeth ... how horrible - and how creative with the straps - just wouldn't know how to begin doing that - I can make cards and things but I'm not a sewing/dress making person at all.

 

John - the liners did nothing for me. They either got almost swallowed or just pulled out of alignment completely.

Interesting point with the cream - will have another go with it that way.

 

Kath - on the base of my CPAP machine it does says something about USA restricted or something but UK none  - doh cannot remember properly, would have to look again, but back is killing me and I am not going upstairs until I have to do.

perhaps if more than one person has a go at ebay? I can see the sense of machines not being allowed, but accessories ??? Does resmed require a prescription for a mask only? What about a petition to ebay??? does ebid have the same restrictions?

 I will definetely have a go at getting that fit lite mask or perhaps similar from hospital. I do sleep on my side and use a feather pillow on top of a foam so that I can tuck the feather one under my face away from the mask but I do have to turn several times at least during the night because of the pain and I go on my back for a few minutes to raise knees a little to try and ease back.

 

I don't get too much marking on face with the liberty, but my nostrels make me look like Miss Piggy for a while when getting up.

The 1st mask  I think was I think quattro??? and I used to look like I'd been in a car accident lol. I just couldn't cope with the pain of that on my nose and the broken skin.

 

I've had a look at some different masks on resmed - okay ..... vented unvented??? sorry if being thick but what is the difference ? the only thing my brain is working on is the expellation of the air?

would unvented mean your partner doesn't get a freezing back???

Having the energy to 'twiddle' with things is a huge thing - finding the desire is almost as bad. To be honest, some days takes a lot of effort just to clean the mask and tank.

 

I know there isn't going to be a miracle cure sigh ... but at least I can try different things to help with comfort and adjustment.

Thank you to everyone view detailsI know I am not alone for sure :)

 

 

 

 

 

 

Thanks Kath, will look at the hybrid too :)

  

As for ebay, restricting sales to USA is not a problem - just like you can for any country. Germany has strict rules about cosmetics etc but it does not stop ebay listing them!

I have emailed ebay asking them why used cosmetics are banned items but they allow thousands to be listed - but why could I not advertise a cpap accessory such as a mask?

Perhaps if we tried one with its full title lol and did not mention cpap ....

ebay claim they cannot monitor all its listings but they sure quick to pick on what they want to aren't they?

I do spend time browsing ebay when I feel up to it,  and I love looking at motor homes etc and dreaming (was our dream once to tour England and abroad when we retired) and you wouldn't believe how many hinkey listings there are on there - I do always report something suspicious - though ebay will not take action on something you believe to be stolen - they tell you to contact the police and will not do anything until police become involved.

Ebay are just interested in profit more than anything at the end of the day and turn blind eyes when they want to!

Obviously mask makers do not want masks etc on ebay as it costs them money, nothing like a captured market is there?

 

Has anyone you know tried those nasal fabric ones? I do breathe through mouth, but would be tempted to try a chine strap - have you had experience of these?

 

Back is murdering me today again and the extra tramadol are making me more tired - I am trying to stay awake but my focus keeps going.

Off to caravan this weekend and am going to breathe fresh air and rest rest rest and catch up with friends :) will still have internet - slow, but steady usually.

 

Hope everyone has a great weekend

hugs Jackie xxxx

 

 

 

Hi Jackie,

 

I bought some cotton lawn (or was it cotton lorn?) on ebay and cut out my own mask liners. They were as good as the expensive ones (well for me they were anyway!)

 

In reply to your question about chin straps - the chin strap the hospital gave me was a rubbishy flimsy one and just added to the discomfort without helping in any way. Some of the ones I've found on ebay look interesting but I haven't actually used the latest one (but plan to when I have more of a mind). Once I'm tired, I forget to do things I want to do and forget to think! I even forget that I've forgotten things! (Sad!) Then there are the chin straps I've cut about to make headgear but I have already told you about that!

 

If I had been thinking, I would have tried the chin strap last night when I absolutely couldn't put the mask on at all because of the pain in my arm where they gave me a jab against pneumonia and it reacted really badly!

 

Hope you enjoy being in your caravan. Life can be a trial!

 

Rosemary

Jackie said:

Thanks Kath, will look at the hybrid too :)

  

As for ebay, restricting sales to USA is not a problem - just like you can for any country. Germany has strict rules about cosmetics etc but it does not stop ebay listing them!

I have emailed ebay asking them why used cosmetics are banned items but they allow thousands to be listed - but why could I not advertise a cpap accessory such as a mask?

Perhaps if we tried one with its full title lol and did not mention cpap ....

ebay claim they cannot monitor all its listings but they sure quick to pick on what they want to aren't they?

I do spend time browsing ebay when I feel up to it,  and I love looking at motor homes etc and dreaming (was our dream once to tour England and abroad when we retired) and you wouldn't believe how many hinkey listings there are on there - I do always report something suspicious - though ebay will not take action on something you believe to be stolen - they tell you to contact the police and will not do anything until police become involved.

Ebay are just interested in profit more than anything at the end of the day and turn blind eyes when they want to!

Obviously mask makers do not want masks etc on ebay as it costs them money, nothing like a captured market is there?

 

Has anyone you know tried those nasal fabric ones? I do breathe through mouth, but would be tempted to try a chine strap - have you had experience of these?

 

Back is murdering me today again and the extra tramadol are making me more tired - I am trying to stay awake but my focus keeps going.

Off to caravan this weekend and am going to breathe fresh air and rest rest rest and catch up with friends :) will still have internet - slow, but steady usually.

 

Hope everyone has a great weekend

hugs Jackie xxxx

 

 

 

 


Good work Jackie and let's hope they start listening if more of us get onto them.  It's very interesting you saying about them turning a blind eye when they want to when it involves big money. 

Regarding the cloth masks, I've heard mixed results (like with all masks) - some love them, some hate them!  I've not been able to try one as they only manufacture the nasal ones at the moment, but they do have plans to make full face ones.

Keep well and enjoy your weekend - it's supposed to be good weather :)
Jackie said:

Thanks Kath, will look at the hybrid too :)

  

As for ebay, restricting sales to USA is not a problem - just like you can for any country. Germany has strict rules about cosmetics etc but it does not stop ebay listing them!

I have emailed ebay asking them why used cosmetics are banned items but they allow thousands to be listed - but why could I not advertise a cpap accessory such as a mask?

Perhaps if we tried one with its full title lol and did not mention cpap ....

ebay claim they cannot monitor all its listings but they sure quick to pick on what they want to aren't they?

I do spend time browsing ebay when I feel up to it,  and I love looking at motor homes etc and dreaming (was our dream once to tour England and abroad when we retired) and you wouldn't believe how many hinkey listings there are on there - I do always report something suspicious - though ebay will not take action on something you believe to be stolen - they tell you to contact the police and will not do anything until police become involved.

Ebay are just interested in profit more than anything at the end of the day and turn blind eyes when they want to!

Obviously mask makers do not want masks etc on ebay as it costs them money, nothing like a captured market is there?

 

Has anyone you know tried those nasal fabric ones? I do breathe through mouth, but would be tempted to try a chine strap - have you had experience of these?

 

Back is murdering me today again and the extra tramadol are making me more tired - I am trying to stay awake but my focus keeps going.

Off to caravan this weekend and am going to breathe fresh air and rest rest rest and catch up with friends :) will still have internet - slow, but steady usually.

 

Hope everyone has a great weekend

hugs Jackie xxxx

 

 

 

 

Hellloooooo all

just wanted to pop in and say hi to all our new members, especially tigers fan who has helped many on another forum that I visit.

If I am quiet for a couple of weeeks its not personal as about to move house and as usual good old BT will take an age to set up phone line and b/band etc.

 

Will be back as soon as I am able.

 

Take care all

 

Andy

Good luck with the house move Andy, and we look forward to your return as soon as you are able! 

Andy Thomas said:

Hellloooooo all

just wanted to pop in and say hi to all our new members, especially tigers fan who has helped many on another forum that I visit.

If I am quiet for a couple of weeeks its not personal as about to move house and as usual good old BT will take an age to set up phone line and b/band etc.

 

Will be back as soon as I am able.

 

Take care all

 

Andy

Good luck Andy.  Hope everything goes smoothly, even good old BT!!

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