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OUCH(UK) Organisation for the Understanding of Cluster Headache

non-rebreathing oxygen mask

15 posts / 0 new
Last post
#1 Wed, 21/06/2017 - 22:08
andyandannie
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Last seen: 1 month 3 weeks ago
Joined: 28/01/2017 - 21:10

non-rebreathing oxygen mask

Hi,
My husband is new to oxygen, used 3 times and helped so far, but can somebody tell me when to replace the non-rebreathing mask, I thinking about hygiene I looked everywhere and I found nothing when to replace the mask.

Thank you

Annie

Thu, 22/06/2017 - 09:19
Val
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Last seen: 15 hours 33 min ago
Joined: 21/03/2012 - 15:16

Ask your oxygen supplier, they can tell you when you should replace it.  I use mine for about six months at a time, I'm the only one who uses it in our household.  But if you notice that any part of the mask is worn, or goes missing, then order a replacement from your oxygen supplier.

 

Val.

Fri, 23/06/2017 - 10:51 (Reply to #2)
andyandannie
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Joined: 28/01/2017 - 21:10

Thank you very much Val. Since Andy can use oxygen he is really better, less stress and better after an attack.

Sun, 02/07/2017 - 20:08
malcolmmole
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Joined: 26/04/2017 - 16:26

I'm in an Air Liquide area (lancashire) and they delivered 4 cylinders ... 2 x 2ltr carryable with backpack,  2 x 10ltr cylinders normally for home but I need one in the car as 20mins 2ltr capacity doesn't suffice when yo can get 2 or 3 cch's whilst out

they also delivered 6 high-flow non-rebreather masks

on asking, I was told as the only user and if only using once a day, then masks ought to last 6 months to a year.... in my case I was told that 3 to 4 months is probably ok.... provided they are looked after, wiped dry, and not allowed to sit in the open (dust) or in direct sunlight.... seeing as I keep the indoor one in a strong black polythene bag (still attached to cylinder) and the "car" one in the pocket of the backpack, I will keep to their suggestions

as a besides.... I have tried Ferno non-rebreathers.. with 2 exhaust valves and reservoir bag.... very good and the type normally found in most hospitals... I paid £7 delivered.. but you should get spares and replacements from your oxygen supplier anyway.

malcolm

malcolmmole

Mon, 03/07/2017 - 16:03
andyandannie
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Joined: 28/01/2017 - 21:10

Thank you Malcom for the advice. I keep the mask in a bag at my husband bedside which I am pleased that it is ok. We have 2 masks then plenty of time before the need for another one.
Annie

Mon, 10/07/2017 - 14:39
malcolmmole
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Joined: 26/04/2017 - 16:26

masks ought to be supplied and replacements supplied when required... as said, in lancs / manchester air liquide supply half a dozen masks at a time and bottle swap in anything from a couple of hours to next day... no swaps friday evening til monday morning except emergency.

 

if cleaning a mask, avoid detergent and washing-up liquid and strictly no cleaning products.... they contain "surfactants" to shift dirt but they can also affect the plastic of the mask.

biocides (anti-bacterials) are best avoided for the same reason and contact lens solution can cause problems.

it's best to dry out the mask with a soft tissue before putting away, in order to stop any chance of mould growth.

malcolm

(I prefer ferno masks as they fit an ancient bearded hippy more securely... and the non-rebreather can be easily found on ebay or medical suppliers... although the air liquide ones are extremely good and the fit is pretty good)

malcolmmole

Tue, 11/07/2017 - 06:54
John S
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Joined: 26/02/2014 - 14:41

Hi

Have you thought about using a demand valve. I purchased mine through Ouch just over 2 years go before they were available on prescription with some suppliers.

it has made a world of difference and you don't get the same cleaning issues as you do with masks.

The valve allows me to take full lungfulls of Oxygen which I couldn't do with the masks and usually aborts an attack after about 6 minutes. I am Epsidic and my bouts were normally 5 weeks. My last bout was 23 days and quite mild in relation to some I have had. I put it down to the valve and being able to inhale vast quantities of oxygen to knock it out, my lung capacity is high. 

I avoid drugs whenever possible.

John

 

 

Tue, 11/07/2017 - 10:15
andyandannie
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Last seen: 1 month 3 weeks ago
Joined: 28/01/2017 - 21:10

Hi,
Thank you John. Good timing for your post. Andy has an appointment this afternoon at the pain clinic which prescribed the oxygen and he can ask about a demand valve. He stopped the Sumatriptan because of the awful side effects.
Annie

Sat, 15/07/2017 - 18:01
malcolmmole
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Joined: 26/04/2017 - 16:26

I hope you do well with the quack... I'm with mine tomorrow..

I'm envious about "demand valves" or "schraeder" valves (as opposed to shroeder valves... shroeder being the piano playing kid in snoopy)...... I'm in an area (northwest) that does not think there is any advantage and won't therefore issue them.

Apparantly its on a "cost effective" basis.... it's obviously better to deliver a large and small cylinder to me every week (or sooner in a bad patch).

malcolm

malcolmmole

Sun, 16/07/2017 - 14:16
andyandannie
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Joined: 28/01/2017 - 21:10

We are lucky that the Pain Clinic consultant is very good to help Andy. We spoke about the demand valve and he is extremely interested and he is going to fill in a HOOF form for it. He cannot guaranty that it will be possible to get it but he is trying.
Annie

Mon, 17/07/2017 - 13:03
malcolmmole
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Joined: 26/04/2017 - 16:26

the availability is down to your cqc.... the local care quality commission and your local nhs trust..... not the consultant.

everybody might say you need a demand valve (my consultant and gp both say this) but my local health authority refuses to authorise them.

you can check online for oxygen demand valves and if you're in an approved area.... the NW isn't... bums

malcolm

malcolmmole

Wed, 19/07/2017 - 11:17
Val
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Joined: 21/03/2012 - 15:16

The oxygen supply companies tender for oxygen supply contract to the NHS every few years.  Masks, cannulae, demand valves etc are all what are known as 'consumables'.  The oxygen company are duty bound to supply the required consumables, if they are listed in their tender to the NHS.  If they are not listed, then you don't and can't get them.  The DOH in 2015 made DV therapy available on the NHS and it is being rolled out across England and Wales.  Scotland and Northern Ireland have separate arrangements.  We recently mail-shotted the membership, asking them to contact their MPs and their local Clinical Commissioning Group [used to be PCTs] asking them to ensure that the oxygen companies include demand valve as a consumable in the new round of contracts coming up this year.  Some of the oxygen companies already supply the DV on the NHS, but to protect sufferers we need to ensure that even in these regions the DV is listed as available in the tender/contract.

GPs can prescribe the DV [there is a relevant HOOF form in the downloads section of this website].  The only time we need to ask a consultant is if we want a portable cylinder prescribed; at present a Part B form is required and we cannot get access to that, but we are told the situation is changing.  Watch this space!

Val

 

Val.

Fri, 08/09/2017 - 15:17
SteelSculptor
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Joined: 30/08/2016 - 15:14

Hi Val,

I'm interested in reading that John S above purchased a demand valve through OUCH.  My partner suffers from ECH, and at present he's using some very basic oxygen mask  - not a non-rebreathable one, as far as I know, and the last couple of nights he's used up two bottles of oxygen a night, more or less.  I can imagine the demand valve would be more conserving of the O2.  We're in NI, and I can't yet get an answer on whether he can get on on prescription (they're meant to let us know next week, so watching that space), but is buying one from OUCH still an option?  And how much do they cost?  Saw them on the BOC site for £363. Sad  Pricey enough!

thanks, 

Louise.

My partner suffers from ECH and 

Steel Sculptor Bangor

Sat, 09/09/2017 - 10:03
Val
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Last seen: 15 hours 33 min ago
Joined: 21/03/2012 - 15:16

Hi Louise

Firstlly just to clarify, a non-rebreather mask has a little reservoir bag on it which reflates between breaths.  On the nose part of the mask will be two circles of holes covered by a loose rubber grommet which opens as you exhale and closes as you inhale.  If it is not of that design then you don't have the right mask and that might account for the fast emptying of a cylinder.  Your oxgyen supplier can supply you with the right mask, just ask on the order line for a non-rebreather mask.  When using the non-rebreather, start inhaling oxygen at around 15 litres a  minute for a few minutes and then turn it down to a level sufficient to keep the bag reflating fully between breaths.  Also stay on the oxygen for a good five to ten minutes after the attack has gone - if you come off the 0xygen too soon it can cause rebound attacks.

John S bought a demand valve thru OUCH at a time when they were not available on the NHS and one of our trustees was carrying out a diary study of using the demand valve.  We loaned them to members with the option to purchase if they so wishes.

Then in 2016 the DOH, accepted demand valve as a form of oxygen therapy for CH and the oxygen companies started rolling them out region by region.   Some of the oxygen companies are refusing to supply the necessary cylinder [needs a schrader connector to take the push fit tube end of the demand valve], and also to supply the DV itself.  We recently asked all our  members to write to their MP and CCG to ensure that when the oxygen company tenders for supply to the NHS [new contracts thi s year], they include demand valve as one of the 'consumables' that they must supply, so we are hoping that suggestion will apply.

You can purchase a demand valve if you wish from a company called Oxylitre, at a specially negotiated price for OUCH members, you will need to quote your OUCH membership number [ you can find it on  your forum account, look on the 'dashboard'], as the price is not available to non-members.  £163.80.  If you want the contact details let me know.  Do bear in mind that eventually these will be available on the NHS and if you purchase one, within a few months it could be available free on the NHS.  The demand valve works much faster than ordinary 02 to abort an attack, uses much less oxygen to do so, so it is a fast and cost effective treatment. 

Hope this helps.

Val.

Fri, 29/09/2017 - 13:51
SteelSculptor
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Last seen: 1 month 3 weeks ago
Joined: 30/08/2016 - 15:14

Gosh sorry for late reply Val!  
Thanks yes that is all really helpful information, I hadn't realised the demand valve needs a particular fitting, but I think (from a look at google image results) that the BOC bottles David gets already have a shrader valve opening - well, it tapers diminishingly as it comes out of the cylinder, but it has 3 or 4 ridges along the taper... some of the ones I'm looking at on screen are smooth and if that's the shrader type required, his won't fit.   I'll look into that further.   The mask he was given at the start is extremely poor, now you describe a non-rebreather properly, there's no bag at all, and no gromits over those openings, so he tends to hold his finger and thumb over the holes each in-breath, and let go for an out breath!!!!  
 
His doctor doesn't seem to be taking a proactive approach, par for the course as I am finding reading around on here, and I/we keep letting the issue slip between his bouts, I think possibly because we're both a little bit in denial about the overwhelming implications of living with such a condition.  Admiration to all out there who are doing so every day.  I am going to proactively chase up both a non-rebreather today, and the DV, expecting that the DV will take a bit longer to get hold of.  Really appreciate all the help and support! 
Louise.

Steel Sculptor Bangor

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