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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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Replies to This Discussion
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Permalink Reply by Jonathan on
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Hi
Spending three days at a sleep clinic sounds very thorough!
I believe you should avoid distilled water (sold for steam irons or car batteries), but the local equivalent of Purified Water BP from a pharmacy is fine, but expensive. Local tap water might be OK, if the water is reasonably soft. I took to using cheap mineral water because has a lot less lime scale than London tap water. Now I have a whole-house water softener, and only use bottled water when travelling (my first purchase when leaving any airport :) A quick rinse of the tank with white vinegar once in a blue moon does the rest.
Karen Hamer said:
At the moment I have some teething problems with getting comfortable and in particular with the mask. I am also unsure about the cleaning regime and even what water to use in the tank. So I will be reading articles and threads on this site with great interest in the hope I can come to terms with a future using a CPAP machine.
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Jonathan said:Hi
Spending three days at a sleep clinic sounds very thorough!
I believe you should avoid distilled water (sold for steam irons or car batteries), but the local equivalent of Purified Water BP from a pharmacy is fine, but expensive. Local tap water might be OK, if the water is reasonably soft. I took to using cheap mineral water because has a lot less lime scale than London tap water. Now I have a whole-house water softener, and only use bottled water when travelling (my first purchase when leaving any airport :) A quick rinse of the tank with white vinegar once in a blue moon does the rest.
Karen Hamer said:
At the moment I have some teething problems with getting comfortable and in particular with the mask. I am also unsure about the cleaning regime and even what water to use in the tank. So I will be reading articles and threads on this site with great interest in the hope I can come to terms with a future using a CPAP machine.
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Karen Hamer said: Thanks Jonathan for the useful info. When the machine was delivered by the manufacturer the man said I should use Gereinigtes water or "medical grade distilled water". I got some no problem at the Apotheke here but when I went back to UK for a few days after New Year the Chemist didn't seem to know what to give me. Eventually she suggested pure water and ordered me 5 litres for less than £5 which seems fair enough. But travelling further afield, which is something we do often, would not be practical to do, so your suggestion of mineral water sounds ideal. The man who delivered the machine said not to use ordinary distilled water as it could still contain bacteria and or germs which I would never have thought. Do I need to empty the water out every day and rinse the tank?
Jonathan said:Hi
Spending three days at a sleep clinic sounds very thorough!
I believe you should avoid distilled water (sold for steam irons or car batteries), but the local equivalent of Purified Water BP from a pharmacy is fine, but expensive. Local tap water might be OK, if the water is reasonably soft. I took to using cheap mineral water because has a lot less lime scale than London tap water. Now I have a whole-house water softener, and only use bottled water when travelling (my first purchase when leaving any airport :) A quick rinse of the tank with white vinegar once in a blue moon does the rest.
Karen Hamer said:
At the moment I have some teething problems with getting comfortable and in particular with the mask. I am also unsure about the cleaning regime and even what water to use in the tank. So I will be reading articles and threads on this site with great interest in the hope I can come to terms with a future using a CPAP machine.
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Hi
Google translates gereinigtes Wasser as purified water, so we're on the right track. Distilled water for steam irons etc. is apparently produced using some nasty chemical processes, and isn't medical grade. Tesco still water is £1.10 for 5 litres, and can be picked up at the local supermarket. And it's definitely food grade :) and universally available.
I know roughly how much water I get through in a night, so I put in a little extra, and chuck the lot out in the morning leaving the water tank to try out during the day. I've never had any problems with the tank getting icky. The hose obviously needs a good rinse through from time to time.
Using the machine is now second nature.
Good luck, and happy travelling.
Jonathan.
Karen Hamer said:
Karen Hamer said: Thanks Jonathan for the useful info. When the machine was delivered by the manufacturer the man said I should use Gereinigtes water or "medical grade distilled water". I got some no problem at the Apotheke here but when I went back to UK for a few days after New Year the Chemist didn't seem to know what to give me. Eventually she suggested pure water and ordered me 5 litres for less than £5 which seems fair enough. But travelling further afield, which is something we do often, would not be practical to do, so your suggestion of mineral water sounds ideal. The man who delivered the machine said not to use ordinary distilled water as it could still contain bacteria and or germs which I would never have thought. Do I need to empty the water out every day and rinse the tank?
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Jon Are you sure you have the two the right way round, Distillation is simply boiling and condensing, and purification is filtering and chemicals.
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Permalink Reply by Kath Hope on
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I was going to say similar. I think Jonathan has written the wrong info by mistake.
Deionised is what's used for irons, kettles etc., and should be avoided.
Distilled is fine to use.
Pure is similar and what a lot of the hospitals use.
Kevin Morgan said:Jon Are you sure you have the two the right way round, Distillation is simply boiling and condensing, and purification is filtering and chemicals.
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My mistake! I muddled up deionised and distilled. It was discussed here: http://hope2sleepguide.co.uk/forum/topics/cleaning-equipment-and
I can confirm that I used Purified Water BP (British Pharmacopoeia), until I switched to bottled water.
Jonathan.
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Don't worry Jonathan - I get muddled up all the time too, and only mentioned it in case people used deionised by mistake.
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Thank you for accepting me to the forum. I'm still very new to using my CPAP machine and must admit struggling quiet a lot with it. I have no problem wearing the mask but it irritates my face, my face feels wet and my nose itches. I find I cannot get the straps comfortable enough, and they are either too tight or too lose that the air escapes. Is this normal? What am i doing wrong? When I adjust the straps it is so tight at the back of my head I get headaches or am too uncomfortable to sleep.
I have also been asked where I place my machine when sleeping? I had no idea it had to be placed in a particular way? Should it be on the floor, next to me or higher than I sleep eg a night stand? Does this make a difference? Does the S9 have a humidifier? Do I need one?
Any help and advice would be welcome.
Thank you
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Permalink Reply by Bill Thomson on
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Welcome to this forum - you may like to join the associated closed Facebook group where you will find a lot of support. It seems quite usual to struggle with mask fit at first, there are different types out there and we are all different shapes so a mask that fits one person well may be useless for another. Although the majority seem to benefit from a humidifier they don't suit all of us - me included. If your face feels damp anyway then a humidifier might make things worse. Do you have a dry nose and mouth when you wake? Machine position is important if you do have a humidifier, less so if not, though it is recommended to always keep it off the floor. If your S9 has a thing called an H5i that fits on the right hand side and contains a water tank then that's a humidifier.
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Welcome Saffa and glad you found us
It can be quite challenging at first and especially those nose itches. The S9 does have a humidifier for people who struggle with dry mouth/nose, so if this is happening then ask your clinic for one. The machine is better positioned below bed height, as if it's too high it can topple over onto you (happened to me years ago and was quite a rude awakening I got and a sore head 
). Also, for people using a humidifier it's important to have this placed lower than the bed (with the hose raised) to help prevent 'rainout' which is when water can enter the mask.Check on the website for an in-depth list of problems http://www.hope2sleep.co.uk/tips-for-problems-sleeping-with-cpap-or...
Saffa said:Thank you for accepting me to the forum. I'm still very new to using my CPAP machine and must admit struggling quiet a lot with it. I have no problem wearing the mask but it irritates my face, my face feels wet and my nose itches. I find I cannot get the straps comfortable enough, and they are either too tight or too lose that the air escapes. Is this normal? What am i doing wrong? When I adjust the straps it is so tight at the back of my head I get headaches or am too uncomfortable to sleep.
I have also been asked where I place my machine when sleeping? I had no idea it had to be placed in a particular way? Should it be on the floor, next to me or higher than I sleep eg a night stand? Does this make a difference? Does the S9 have a humidifier? Do I need one?
Any help and advice would be welcome.
Thank you
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Permalink Reply by Michele Naisbitt on
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Hello Kath and Mike. I have joined this forum as my 76 year old mother has recently been diagnosed with OSA. I suspect she has had this condition for any years - we often teased her about her loud snoring but she would always deny it! She is one week into using her CPAP and I can already see an improvement in her. I'm sure I will be back here soon for more advice
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