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Ultraflow Oxygen Demand Valve

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#1 Thu, 18/04/2019 - 16:55
chrisandlynne1
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Last seen: 1 week 1 day ago
Joined: 18/04/2019 - 12:36

Ultraflow Oxygen Demand Valve

Good afternoon all,

Apologies if this has been answered elsewhere, I did do a search but couldn't find anything.  I've today received my two bottles of Oxygen.  The chap who delivered them gave me an Ultraflow Oxygen Demand Valve, as well as the standard non-rebreather.

I've not used one of these before, so was wondering is there a maximum time you can use it for?  He explained that it's more effective for cluster headaches.  Previously I have used the non-rebreather, for 15-20 minutes (more if needed), plus 5 minutes to make sure.  Is it the same sort of timeframe with the Ultraflow please?

Many thanks... I'm a bit of a newbie to this CH business and feel for you all! cryingCray 2

Thu, 18/04/2019 - 19:29
ElizabethK
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Last seen: 52 min 22 sec ago
Joined: 26/02/2014 - 14:26

Pleased you have the Demand Valve.  The rule of thumb we suggest for both the Demand Valve and the mask and tubing is, to get on the oxygen when you feel the first niggle of an attack, stay on until the pain has gone and then a further 5 mins to mopup the attack.  The Demand Valve usually takes the pain sooner than the mask!  If you would like someone to walk you through it please feel free to call the Helpline 01646 651979 and leave a message and someone will call you back.

take care

Liz

Thu, 18/04/2019 - 19:30
ElizabethK
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Last seen: 52 min 22 sec ago
Joined: 26/02/2014 - 14:26

Pleased you have the Demand Valve.  The rule of thumb we suggest for both the Demand Valve and the mask and tubing is, to get on the oxygen when you feel the first niggle of an attack, stay on until the pain has gone and then a further 5 mins to mopup the attack.  The Demand Valve usually takes the pain sooner than the mask!  If you would like someone to walk you through it please feel free to call the Helpline 01646 651979 and leave a message and someone will call you back.

take care

Liz

Thu, 18/04/2019 - 22:53 (Reply to #3)
chrisandlynne1
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Last seen: 1 week 1 day ago
Joined: 18/04/2019 - 12:36

Thank you Liz, I really appreciate you getting back to me.  Just used the Demand Valve for the first time this evening.  Mixed first impressions... it feels like harder work than the non-rebreather, but did appear to work slightly quicker.  I stayed on for the extra 5 minutes as you suggested too, fingers crossed it holds off any rebounds.  Once again, thanks very much!

Best wishes,

Chris

Tue, 07/05/2019 - 08:57
DawnM
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Last seen: 1 week 6 days ago
Joined: 01/11/2018 - 13:20

Please forgive me for jumping on on your post, but what levels of oxygen are correct to have? i am still waiting for mine (requested by GP in November). Gp now writing to them again --, i need to know the correct levels and which mask etc? The non re-breathable or demand valve? Really poorly at the moment (fractured hip, fibromyalgia, ME, diabetes, cirrhosis of the liver, gastritis and going blind) ( shoot me now eh!--)
My ECH have returned after 18 months off, now attacking in middle of night, have sumatriptan jabs but need the oxygen too...any advice would be appreciated

DawnM

Wed, 08/05/2019 - 23:15
John S
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Last seen: 9 hours 19 min ago
Joined: 26/02/2014 - 14:41

Hello Dawn,

I am an epsidic sufferer and use both Oxygen and Sumatriptan. For many years I used the non rebreathable mask which for me aborted the attack after 8 to 10 minutes. I generally had it on setting 12 and continued for about 10 minutes after the attack finished. I can normally r Duce the flow rate to 10 or 8 after a few minutes.However a few years ago I purchased a demand valve through an Ouch supplier as at the time they were not available on the NHS. I found the valve quick and easy to use, I felt I was getting more oxygen inside my system faster and my attacks generally aborted slightly quicker sometimes after 6 minutes. I still continued for up to 10 minutes after the attack had aborted. There is no flow setting on the valve it is controlled by your inhaling speed. As a rule of thumb I use up to two cylinders a week on the demand valve and three on the mask.

For me it is a no brainier with regard to choice, a demand valve every time. From what I read my attacks are aborted quicker than many. Also there are times when my period of attacks are really severe and nothing will calm them but fortunately they are most of the time under control.

With regard to Sumatriptan I do use the injections and they work just as fast as the Oxygen. My preference is always Oxygen but with both it is important to take as soon as you feel an attack approaching. If you delay I find them less effective.

With regard to attacks at night I learnt from the former Chairman of Ouch to take a 50mg Sumatriptan tablet just  before going to bed. I sometimes get a period of nighttime attacks and the majority of times the tablet works in keeping them at bay and enables a good nights sleep. Many will tell you tablets are useless, don’t work, are not authorised as a preventative and there is no research that they work as a preventive, the latter is  because none has been done. The important thing is what works for you, we are all different and to me it irresponsible for people to reject out of hand something that works for me and others. The pain we all suffer is unbearable anything that can bring relief should be encouraged. The active ingredient in the tablet is the same as the injection, the tablets are just not effective in the day in quickly stopping an attack due to the slow absorption to the blood stream. However once inside it has the same effect as the injection that is why to me it works in your sleep. This is not a medical opinion but just a logical view from my very simple mind.

Two points about the tablets. They do count towards your two Sumatriptan  doses in 24 hours so it’s best to use the nighttime tablet when using Oxygen in the day  so you don’t exhaust your Sumatriptan options. The other thing is discuss with your doctor what you  want to do and emphasise that the tablets are not a replacement for the injection otherwise the doctor will jump at the opportunity to stop your injections since the cost of tablets is minimal in comparison.

i am sorry to learn of the delay in getting oxygen, personally I would go straight to the practice manager to resolve, it is disgraceful that so many sufferers have to go without and suffer this unbearable pain due to poor understanding by some of the medical profession who should know better. 

i hope this helps a little, best wishes.

John

 

 

 

 

 

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