Apnea reading

Replies to This Discussion

Permalink Reply by Terry Vella on November 27, 2011 at 22:43

I still make my own, I just go to a fabric shop and buy a metre of 50% Cotton/polyester blend or 50% Cotton/lyrca blend for a few dollars and then like Rosemary made a template and my wife cuts them out. The metre lasts me months. I get about 6 uses out of each one and wash them every second day. When I did use the RemZzzs I still got about 6 uses out of each one and washed them every second day. I also use a chin strap that I put on the outside of the mask (some say it should be on the inside) and was getting mask lines in the morning so I just wrap some of the material I buy for the liners around the straps where the lines appear and that solves that. There are lots of little tips and tricks that hospitals and sleep centres either don't know about or don't tell patients. Kath has put together a tips and tricks sheet on this forum for newbies.

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Permalink Reply by Rosemary Kemp on November 27, 2011 at 22:55

Another thing I have done is cut up and alter chin straps (your mention of chin straps has reminded me of this Terry) to turn them into my own design of mask headgear. It has been quite a comfortable solution. I used velcro for the connectors and it made the whole thing less tight but still well fitting.

I haven't done this for a while but I think I'll have another go in the holiday. My hospital gave me a couple of headgear straps to mess about with when I told them what I do. I had found the chin straps on ebay. They don't supply many masks at my hopsital but they seem to be happy to supply me with headgear. This might make a difference for you too Margaret if you are handy with a needle and cotton. The headgear can be very difficult to get "just so"! Stay in there! It gets to be less of a nightmare! Rosemary

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Permalink Reply by Kath Hope on November 28, 2011 at 11:54

Yes, this is one of the worst parts of settling into the treatment for some of us Margaret - getting the 'right' mask!  On top of this we have to learn to accept having to sleep with a mask, which takes time getting used to.  When I started out I must have tried every full face mask on the market at the time until I found one that worked for me.  At the time I settled on the Fisher Paykel 432 alternating between that and the Innomed Hybrid.  I've since moved to the Fitlife which is my favourite at the moment.  When you go back to the hospital see if you can try on every mask they stock, and good luck.....

Margaret Ward said:

Hi

Not struggling with the machine but I find the masks ( I have tried 2) very uncomfortable and easily leak if I move around too much.  I do sleep but in 1 hour/1 and a half hour sessions.
Terry Vella said:

Margaret, which part are you struggling with, the CPAP consept itself or the equipment i.e. mask leaks etc.

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Permalink Reply by Kath Hope on November 28, 2011 at 12:14

I agree Rosemary, and find the hose lift one of the best accessory to benefit our treatment.  Seems like lots of others think the same as we've had a surge in sales on them and only have 1 left on the website.  However, more are on the way so should be here very soon.

Regarding the pillow issue, I've got 5 different CPAP ones, but watch this space in the New Year, as I'll be revealing news of our brand new patented pillow which will only be available from Hope2Sleep ;)

Rosemary Kemp said:

Have you got a hose lift Margaret? The hose moves better when it is high up and the mask tends to leak less. The hose lift can be bought on Hope2sleep and I reckon it is the cleverest gadget I have ever bought. Not too expensive either. If you already have one and it isn't helping, you might find that a better pillow arrangement may help too. If you have your head in a reasonably comfortable position you tend to move less (I think) and then the risk of leakage is reduced. This is a really difficult thing to come to terms with. Just keep trying to adjust the mask straps. The cream also helps me. There is this special moisturising cream that doesn't damage the mask but seems to make the seal better next to the face. I also struggled like this for a long time and even now there are bad nights. It has become easier after three years and lots of different masks. I think we all find we have favourite masks but the favourite mask changes from week to week for me! Keep on experimenting and be brave.  

Keep on talking to us all.

Rosemary   

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Permalink Reply by Margaret Ward on November 28, 2011 at 12:19

Thank you very much.  I am learning more and more from everyones kind responses.

Kath Hope said:

I agree Rosemary, and find the hose lift one of the best accessory to benefit our treatment.  Seems like lots of others think the same as we've had a surge in sales on them and only have 1 left on the website.  However, more are on the way so should be here very soon.

Regarding the pillow issue, I've got 5 different CPAP ones, but watch this space in the New Year, as I'll be revealing news of our brand new patented pillow which will only be available from Hope2Sleep ;)

Rosemary Kemp said:

Have you got a hose lift Margaret? The hose moves better when it is high up and the mask tends to leak less. The hose lift can be bought on Hope2sleep and I reckon it is the cleverest gadget I have ever bought. Not too expensive either. If you already have one and it isn't helping, you might find that a better pillow arrangement may help too. If you have your head in a reasonably comfortable position you tend to move less (I think) and then the risk of leakage is reduced. This is a really difficult thing to come to terms with. Just keep trying to adjust the mask straps. The cream also helps me. There is this special moisturising cream that doesn't damage the mask but seems to make the seal better next to the face. I also struggled like this for a long time and even now there are bad nights. It has become easier after three years and lots of different masks. I think we all find we have favourite masks but the favourite mask changes from week to week for me! Keep on experimenting and be brave.  

Keep on talking to us all.

Rosemary   

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Permalink Reply by Kath Hope on November 28, 2011 at 12:19

Pleased to read here how well you're getting on nowadays Helen and it's so lovely you're now in a position to encourage others :)  Shame you had to buy your own mask, but at least it's been a big improvement for you.  Just in case you didn't know, you can replace the cushion and/or headgear on your ComfortFull without having to buy a whole new mask next time.  As from the end of this week, we will be selling these masks and parts on the Hope2Sleep website.

Helen said:

Hi Margaret,

 

I am on my 4th mask - full comfort gel.  I was reluctant to try it but find it has a better fit.  I find it does leak sometimes as I move about a lot and sleep on my side (I used to sleep  on my back but trained myself over the years not to!).  I cleanse my face and mask just before I fit it to ensure there is no grease on my skin.  I usually get a good 6 hours sleep now and sometimes even 8 - I am amazed!!

I'm only 3 months into this and find it is still trial and error.  I am fortunate in that my hospital, Salford Royal,  have allowed me to try so many masks and that they have the variety they do!  

Keep at it and read up on this site - I have found it invaluable and Kath Hope is just fantastic to speak to.  She is very helpful and supportive and reading the forum is reassuring that everyone here has been where we are now!

Take each night as it comes and know it does get better!

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Permalink Reply by Colette Walsh on December 17, 2011 at 20:54

I am from Belfast and when first tested I had a rate of 200 per hour. after 3 years it is down to 22 per hour. However the rate of my cpap machine is still at 15.

As for the mask it now leaks constantly, as it has rained me out totally last night. My pillow was soaked. Now I will ask for a new mask on the NHS.I have just bought two of the covers for the tube and intend to use both as I like my bedroom cool.

Also I got tested for my my sinuses and the doctors discovered my nasal passages were inflamed so I was prescribed a nasal spray to help clear the passages for breathing, even though I am a mouth breather at night.

Good luck every one, especially those of you who have to pay for your equipment

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Permalink Reply by Kath Hope on December 17, 2011 at 21:31

My goodness Colette......200 per hour!!!  Well that's the highest I've heard of - you must have felt so ill before your diagnosis.

Colette Walsh said:

I am from Belfast and when first tested I had a rate of 200 per hour. after 3 years it is down to 22 per hour. However the rate of my cpap machine is still at 15.

As for the mask it now leaks constantly, as it has rained me out totally last night. My pillow was soaked. Now I will ask for a new mask on the NHS.I have just bought two of the covers for the tube and intend to use both as I like my bedroom cool.

Also I got tested for my my sinuses and the doctors discovered my nasal passages were inflamed so I was prescribed a nasal spray to help clear the passages for breathing, even though I am a mouth breather at night.

Good luck every one, especially those of you who have to pay for your equipment

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Permalink Reply by Margaret Ward on December 17, 2011 at 22:56

Thanks very much for that.  It is reassuring when I hear other people have cracked it - so to speak.  I am looking forward to it all coming natural instead of dreading each night.

Kath Hope said:

Pleased to read here how well you're getting on nowadays Helen and it's so lovely you're now in a position to encourage others :)  Shame you had to buy your own mask, but at least it's been a big improvement for you.  Just in case you didn't know, you can replace the cushion and/or headgear on your ComfortFull without having to buy a whole new mask next time.  As from the end of this week, we will be selling these masks and parts on the Hope2Sleep website.

Helen said:

Hi Margaret,

 

I am on my 4th mask - full comfort gel.  I was reluctant to try it but find it has a better fit.  I find it does leak sometimes as I move about a lot and sleep on my side (I used to sleep  on my back but trained myself over the years not to!).  I cleanse my face and mask just before I fit it to ensure there is no grease on my skin.  I usually get a good 6 hours sleep now and sometimes even 8 - I am amazed!!

I'm only 3 months into this and find it is still trial and error.  I am fortunate in that my hospital, Salford Royal,  have allowed me to try so many masks and that they have the variety they do!  

Keep at it and read up on this site - I have found it invaluable and Kath Hope is just fantastic to speak to.  She is very helpful and supportive and reading the forum is reassuring that everyone here has been where we are now!

Take each night as it comes and know it does get better!

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Permalink Reply by Margaret Ward on December 17, 2011 at 22:59

Margaret Ward said:

Thank you very much.  I am learning more and more from everyones kind responses.

Kath Hope said:

I agree Rosemary, and find the hose lift one of the best accessory to benefit our treatment.  Seems like lots of others think the same as we've had a surge in sales on them and only have 1 left on the website.  However, more are on the way so should be here very soon.

Regarding the pillow issue, I've got 5 different CPAP ones, but watch this space in the New Year, as I'll be revealing news of our brand new patented pillow which will only be available from Hope2Sleep ;)

Rosemary Kemp said:

Have you got a hose lift Margaret? The hose moves better when it is high up and the mask tends to leak less. The hose lift can be bought on Hope2sleep and I reckon it is the cleverest gadget I have ever bought. Not too expensive either. If you already have one and it isn't helping, you might find that a better pillow arrangement may help too. If you have your head in a reasonably comfortable position you tend to move less (I think) and then the risk of leakage is reduced. This is a really difficult thing to come to terms with. Just keep trying to adjust the mask straps. The cream also helps me. There is this special moisturising cream that doesn't damage the mask but seems to make the seal better next to the face. I also struggled like this for a long time and even now there are bad nights. It has become easier after three years and lots of different masks. I think we all find we have favourite masks but the favourite mask changes from week to week for me! Keep on experimenting and be brave.  

Keep on talking to us all.

Rosemary   

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Permalink Reply by Kath Hope on December 17, 2011 at 23:02

It will Margaret.  I hated CPAP at first and now, years later it's just a natural part of my life.  I count myself being very lucky I was diagnosed, and at least we only have to use the equipment when sleeping.  Some poor people with other 'conditions' are hooked up to an oxygen mask during the day too.   Once you get your comfort aspect sorted it all becomes easier, and more importantly, you can live a healthier life with more energy :)

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Permalink Reply by Margaret Ward on December 18, 2011 at 10:20

Very true and should not moan!!

Kath Hope said:

It will Margaret.  I hated CPAP at first and now, years later it's just a natural part of my life.  I count myself being very lucky I was diagnosed, and at least we only have to use the equipment when sleeping.  Some poor people with other 'conditions' are hooked up to an oxygen mask during the day too.   Once you get your comfort aspect sorted it all becomes easier, and more importantly, you can live a healthier life with more energy :)

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