Introduction & require advice please

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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zonker
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Re: Introduction & require advice please

Post by zonker » Thu Apr 25, 2019 8:25 pm

zonker wrote:
Thu Apr 25, 2019 5:21 pm
Zokaluse wrote:
Thu Apr 25, 2019 4:48 pm
I did call res med who asked me a few questions relating to which hospital & if I pay for my treatment privately & then told me to call my hospital as they will provide me with the humidifier.
I didn’t get around to calling the unit until today & I was called back within ten minutes of leaving my message & was given 2 times I could pop in today to collect a humidifier & for her to tell me the instructions. I was impressed at both the provision of it, the immediate call back & then going into a full hospital waiting room not needing to take a number ticket & being called by the same nurse I saw initially who then showed me how to change humidifier settings etc & then gave me the humidifier & the tube to go with it.
I can’t use it tonight 😟 as I forgot to buy bottled water.
you can still use it. bottled water(are you taking about distilled water?) is merely a convenience though it's what you want to use long term. one night without it won't cause any harm.

good luck!
jeez, zonker, no need to say it twice. :oops:
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Jas_williams
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Re: Introduction & require advice please

Post by Jas_williams » Thu Apr 25, 2019 11:48 pm

Zokaluse wrote:
Thu Apr 25, 2019 4:48 pm
I did call res med who asked me a few questions relating to which hospital & if I pay for my treatment privately & then told me to call my hospital as they will provide me with the humidifier.
I didn’t get around to calling the unit until today & I was called back within ten minutes of leaving my message & was given 2 times I could pop in today to collect a humidifier & for her to tell me the instructions. I was impressed at both the provision of it, the immediate call back & then going into a full hospital waiting room not needing to take a number ticket & being called by the same nurse I saw initially who then showed me how to change humidifier settings etc & then gave me the humidifier & the tube to go with it.
I can’t use it tonight 😟 as I forgot to buy bottled water.
There is no need to use bottled water just use tap water and clean with vinegar or lemon juice when it gets scaled up. Using bottled water will not prevent the build up of limescale

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rick blaine
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Re: Introduction & require advice please

Post by rick blaine » Fri Apr 26, 2019 5:06 am

Jas_williams wrote:

"Using bottled water will not prevent the build up of limescale."

But it will slow down the rate of build up. The water in Surrey (where Zokaluse is posting from) has over 300 mg of magnesium carbonate and calcium carbonate per litre in it. The Scottish bottled water has 60 mg.

That means the build-up of limescale will be five times slower. Which means using the vinegar or lemon juice five times less often (for the same 'time-to-fix-this' threshold of scale or 'fur').

Give people all the information. Let them make the choice. :)

Zokaluse
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Location: Surrey, England, UK

Re: Introduction & require advice please

Post by Zokaluse » Sun Apr 28, 2019 9:09 am

Janknitz wrote:
Thu Apr 25, 2019 5:20 pm

There are a few things that might explain this:

1. mouth breathing causing you to have a really dry mouth. Even a humidifier won't help much with this, trying to learn to keep your mouth closed during sleep will help (practice all day when you are not eating or talking to keep your tongue on the roof of your mouth and lips sealed). An exceptionally dry mouth is miserable.

2. Your mask may be putting pressure on a facial nerve or causing a shift in your TMJ. I would recommend taking your mask to the dentist or orthodontist and have them take a look at you wearing it to see if something might be pressing on a nerve or shifting your TMJ.
I can’t close my mouth naturally at all & end up with jaw ache & headaches when I try .. my bottom jaw is small & set too far back ..I should have head gear & extensive orthodontics as a child but I refused so I’m going through orthodontic & orthognathic treatment to resolve it now!

Thank you for the advice, I am due at the dentist soon for a check up so I shall take my mask along.

Zokaluse
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Location: Surrey, England, UK

Re: Introduction & require advice please

Post by Zokaluse » Sun Apr 28, 2019 9:11 am

zonker wrote:
Thu Apr 25, 2019 5:21 pm

you can still use it. bottled water(are you taking about distilled water?) is merely a convenience though it's what you want to use long term. one night without it won't cause any harm.

good luck!
My nurse told me bottled or filtered only. We live in a very hard water area. My Softners gets fitted next week so won’t have to buy plastic bottles after that (I’m a plastic free household)

Zokaluse
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Re: Introduction & require advice please

Post by Zokaluse » Sun Apr 28, 2019 9:17 am

rick blaine wrote:
Thu Apr 25, 2019 6:42 pm
Hi Zokaluse,

The NHS is doing you proud. :D

OK, now you're ready for the 'what kind of water?' bit.

Since you live in Surrey, you have 'hard to very hard' water (source: the Pure Water People website.) And if you use the water out of the tap on a regular basis, the humidifier tank will 'fur up' with calcium carbonate.

And ... it's quite easy to get off. Every two or three weeks, when you see the deposits have built up, just soak the tank in one part of white spirit vinegar to three parts of warm tap water – for about 20 minutes. And then rinse.

If you don't like the smell of vinegar, then fresh lemon juice will do just as well – but you might need to soak the tank for a bit longer – about an hour.

You mention bottled water, and that is a good idea because the best brands have a much lower level of calcium carbonate in them, so the furring up, while it still happens, it does so at slower rate.

I use Sainsbury's Still Scottish Mountain Water because it is very, very soft. And if you buy the family pack, you get 8 litres for only £1.45.

Other prices: 568 ml bottle of Sainsbury's distilled malt vinegar, 50p. Sainsbury's lemons, 35p each.

PS. Do not – in the UK – use the kind of 'distilled water' sold in Halfords or a petrol filling station shop. It's not guaranteed to be sterile or medically safe. You can, if you're bonkers, buy medically safe distilled water from the likes of Boots or Lloyds. But (a) they have to order it in specially, and (b) it costs a ridiculous amount of money.

Nope, Sainsbury's Still Scottish Mountain Water really is the best bet for any APAP user in the UK.
They certainly are!

I just bought a huge bottle from Aldi as that’s where I was by. Do the lemon juice, vinegar & bicarbonate of soda on all my limescale ruined fittings & I soak citrus peels in big bottles of vinegar then strain it when decanting to my spray bottles, it smells lovely. 😁

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zonker
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Re: Introduction & require advice please

Post by zonker » Sun Apr 28, 2019 11:11 am

Zokaluse wrote:
Sun Apr 28, 2019 9:11 am
zonker wrote:
Thu Apr 25, 2019 5:21 pm

you can still use it. bottled water(are you taking about distilled water?) is merely a convenience though it's what you want to use long term. one night without it won't cause any harm.

good luck!
My nurse told me bottled or filtered only. We live in a very hard water area. My Softners gets fitted next week so won’t have to buy plastic bottles after that (I’m a plastic free household)
that's very different. carry on, then!
people say i'm self absorbed.
but that's enough about them.
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Janknitz
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Re: Introduction & require advice please

Post by Janknitz » Sun Apr 28, 2019 3:17 pm

I can’t close my mouth naturally at all & end up with jaw ache & headaches when I try .. my bottom jaw is small & set too far back ..I should have head gear & extensive orthodontics as a child but I refused so I’m going through orthodontic & orthognathic treatment to resolve it now!
I have a very small and receded jaw as well, in my case it's diagnosed as "Micrognathia" and associated with a genetic syndrome I have. I had retraction orthodontia as a kid, but it wasn't necessarily the best treatment as pushing the top teeth back did not improve the lower jaw issue. My daughter was born with it as well, and we spent a fortune and many years on the opposite type of orthodontia that brought her lower jaw forward, slowly and carefully without surgery--and she has a nice patent airway with no sleep apnea, I'm pleased to say. Mine sleep issues are severe despite all that orthodontia--it was state of the art at the time, but not so good in retrospect. So maybe you didn't miss out on anything.

I'm sorry you can't seal your mouth. You might talk to your dentist about creating a mouthpiece for you out of a soft material that will also help you seal your mouth. I've gotten kind of the same effect with a boil and bite mouthpiece you can buy at a drugstore. It's fairly comfortable. I wear it because sometimes sealing the mouth with my tongue causes a bit of suction that pulls my cheeks against the edges of my upper teeth and hurts. It does have small air holes so you won't suffocate, and pressurized air will probably still escape those holes if you can't use your tongue on the roof of your mouth to seal the airway. (The real seal comes from your tongue against the roof of your mouth, not your teeth and lips). But combining it with a FF mask might reduce the dry mouth effect by a lot.

I hope you find a good solution. Sleeping without CPAP is detrimental to your health.
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Sweden
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Re: Introduction & require advice please

Post by Sweden » Mon May 06, 2019 11:25 am

rick blaine wrote:
Thu Apr 25, 2019 6:42 pm
Hi Zokaluse,

OK, now you're ready for the 'what kind of water?' bit.

Since you live in Surrey, you have 'hard to very hard' water (source: the Pure Water People website.) And if you use the water out of the tap on a regular basis, the humidifier tank will 'fur up' with calcium carbonate.

And ... it's quite easy to get off. Every two or three weeks, when you see the deposits have built up, just soak the tank in one part of white spirit vinegar to three parts of warm tap water – for about 20 minutes. And then rinse.

If you don't like the smell of vinegar, then fresh lemon juice will do just as well – but you might need to soak the tank for a bit longer – about an hour.
Good to know. I wasn't given a lecture about using "distilled" water, but only read about it subsequently. I live in a middle-hard water area, so am used to removing the ¿lime scale? or whatever the mineral build-up is called.

I was debating buying a water distiller, as distilled water is really not readily available here, but now I will wait, and use the usual chemicals to descale the hose and water tank. As I understand it, no other parts of the machine are affected?

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Julie
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Re: Introduction & require advice please

Post by Julie » Mon May 06, 2019 11:57 am

Nope, none.

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palerider
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Re: Introduction & require advice please

Post by palerider » Mon May 06, 2019 12:59 pm

Sweden wrote:
Mon May 06, 2019 11:25 am
I was debating buying a water distiller, as distilled water is really not readily available here, but now I will wait, and use the usual chemicals to descale the hose and water tank. As I understand it, no other parts of the machine are affected?
The hose shouldn't be affected, since all that goes through that is water vapor... Leaving the minerals behind.

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Re: Introduction & require advice please

Post by Sweden » Mon May 06, 2019 2:24 pm

palerider wrote:
Mon May 06, 2019 12:59 pm
Sweden wrote:
Mon May 06, 2019 11:25 am
I was debating buying a water distiller, as distilled water is really not readily available here, but now I will wait, and use the usual chemicals to descale the hose and water tank. As I understand it, no other parts of the machine are affected?
The hose shouldn't be affected, since all that goes through that is water vapor... Leaving the minerals behind.
So only the water reservoir? One could buy a lot of those for the cost of daily distilled water!

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Julie
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Re: Introduction & require advice please

Post by Julie » Thu May 09, 2019 10:34 am

You don't NEED to use distilled every day - it's not about therapy, but keeping the tank clean and your local chem. composition of water determines it, so many do use tap water a lot, especially if travelling, but you need to keep an eye out for scum in the tank (pinkish slime) and get rid of it (Q-tips, vinegar, etc) when it shows up.

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babydinosnoreless
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Re: Introduction & require advice please

Post by babydinosnoreless » Thu May 09, 2019 10:55 am

Janknitz wrote:
Sun Apr 28, 2019 3:17 pm
I can’t close my mouth naturally at all & end up with jaw ache & headaches when I try .. my bottom jaw is small & set too far back ..I should have head gear & extensive orthodontics as a child but I refused so I’m going through orthodontic & orthognathic treatment to resolve it now!
I have a very small and receded jaw as well, in my case it's diagnosed as "Micrognathia" and associated with a genetic syndrome I have. I had retraction orthodontia as a kid, but it wasn't necessarily the best treatment as pushing the top teeth back did not improve the lower jaw issue. My daughter was born with it as well, and we spent a fortune and many years on the opposite type of orthodontia that brought her lower jaw forward, slowly and carefully without surgery--and she has a nice patent airway with no sleep apnea, I'm pleased to say. Mine sleep issues are severe despite all that orthodontia--it was state of the art at the time, but not so good in retrospect. So maybe you didn't miss out on anything.
I also had a too small bottom jaw. They started me with retainers when I was 6. In middle school they did jaw surgery broke it pulled it forward and put pins in. I also had to wear headgear to push my front teeth back. I would never do that to a kid of mine. I hated my mom then for putting me through it. It still annoys me today and I'm old now. :lol:

It didn't save me from sleep apnea. In fact I probably had it for years before I was diagnosed. So OP be glad you weren't put through all that as a child. As an adult you can make informed choices and have control over your own treatment.