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

Views: 12996

Reply to This

Replies to This Discussion

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.



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.



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.

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?

Jon Are you sure you have the two the right way round, Distillation is simply boiling and condensing, and purification is filtering and chemicals. 

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. 

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.

Don't worry Jonathan - I get muddled up all the time too, and only mentioned it in case people used deionised by mistake.

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

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.

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

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

Reply to Discussion

RSS

Sleep Apnoea Forum

New to the Sleep Apnoea Forum? 

1. Stop by our Sleep Apnoea Welcome Center to introduce yourself to the SleepGuide community.
2. Start a New Topic of Conversation.
3. Post your photos - of yourself, your old CPAP machine, your new CPAP machine, your pet, something about you!

Interested in advertising, have a problem or need to contact us? Click the Report an Issue page.

 

Latest Activity

Jonathan replied to Jonathan's discussion ResMed AirSense 10 getting noisy
"Just to tidy this up, I finally had an in-person review by my sleep clinic yesterday, who agreed the ResMed AirSense 10 was "wheezy" and replaced the machine."
Nov 9
Collette rose replied to Collette rose's discussion 1st time and I’ve failed the mask leak test
"thank you jonathan,i did get the it pack so tried the small and still struggled but i was sat up in bed so will try lying down great suggestion "
Nov 3
Jonathan replied to Collette rose's discussion 1st time and I’ve failed the mask leak test
"Hi My first thought is "don't panic"!  We're all a bit different, and there are many things that can be tweaked.  I took to CPAP therapy like a duck to water, but I've had friends who say they can't cope, but…"
Nov 2
Collette rose posted a discussion

1st time and I’ve failed the mask leak test

Hi everyone, today I received my rental kit - prisma smart max, plus a Philips dreamwear mask which I’ve been wearing unconnected to try and get used to it. I just did a mask fit test using a medium mask and got a constant red/orange leak warning…See More
Nov 2
Collette rose is now a member of Hope2SleepGuide
Oct 31
John posted a discussion
Oct 30
Profile IconBill Wright, Nicole Watson, TJ Bennett and 2 more joined Hope2SleepGuide
Oct 29
John replied to John's discussion evil mask noise
"Ha well it lasted a couple of days but started howling again. But it's a step in the right direction, just needs a bit more work."
Oct 24
Jonathan replied to John's discussion Has anyone been told root cause of their OSA?
"Nope, I just accept that some people's throats tend to close when they sleep, due to a loss of muscle tone during deeper sleep.  Back when I was diagnosed, the sleep lab just filmed you whilst you slept, stuck an O2 meter on your finger,…"
Oct 24
Jonathan replied to John's discussion evil mask noise
"Good to know you found a solution!"
Oct 24
John replied to John's discussion Has anyone been told root cause of their OSA?
"Did anyone tell you exactly what the anatomical issue is, Jonathan?"
Oct 21
John replied to Jonathan's discussion ResMed AirSense 10 getting noisy
"Can't say I know about this."
Oct 20
John replied to John's discussion evil mask noise
"So I tore some fabric from one of the filters and glued it over the holes - and it worked!It was dead quiet, and the air was still flowing freely.It was quiet all night then after a few hours a bit of whistling until I gave it a wipe.Vast…"
Oct 19
John replied to John's discussion evil mask noise
"Hi Jonathan, well see my nose is blocked a lot, so I mouth breath which really sucks a lot more moisture and makes my mouth dry. So I put humidity on maximum, which makes for condensation at the mask end, which becomes a demonic reed instrument.Now…"
Oct 17
Jonathan posted a discussion

ResMed AirSense 10 getting noisy

HelloI have an NHS issued ResMed AirSense 10 with heated humidifier.  In the last couple of weeks, it's developed an annoying noise, when I inhale. It bothers me a little and my partner a lot! I sometimes get problems if the water container in the…See More
Oct 16
Jonathan replied to John's discussion evil mask noise
"Hi My first question is why is condensation forming?  I very occasionally get some condensation, may be once a month, but I can quickly run a finger around the inside of the mask, and wipe it away.  I use a nasal mask, with the humidifier…"
Oct 16
John replied to John's discussion What's a good Apnea forum?
"11K+? Ok that's probably where I should look then :-)"
Oct 16
Kath Hope replied to John's discussion What's a good Apnea forum?
"Hi John. Thanks for the compliment as I do my best popping on here, but it's difficult due to us now supporting 25k+ patients at the charity. To be honest, the forum is quiet because most people seem to prefer Facebook and forums aren't as…"
Oct 16
John posted discussions
Oct 16
Jonathan replied to John's discussion Has anyone been told root cause of their OSA?
"There's some information here, but generally it's very common and likely due to our anatomy."
Oct 12

© 2024   Created by The SleepGuide Crew.   Powered by

Badges  |  Report an Issue  |  Terms of Service