OUCH(UK) Organisation for the Understanding of Cluster Headache


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Portable Oxygen

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#1 Tue, 30/07/2019 - 10:12
Andy Howland
Andy Howland's picture
Last seen: 5 months 3 weeks ago
Joined: 28/06/2016 - 12:35

Portable Oxygen

Hi everyone,

I was first diagnosed as having ECH in 1992. Since trying oxygen 5years ago I have been trying to get it prescribed. 
At last, last week I got it. 
I was given a static cylinder and it works perfectly for me. I also asked for a portable cylinder that I could take with me to work etc and was told that I can't have both. 
Is this correct? Does anyone else have experience of this??

thanks Andy

Wed, 31/07/2019 - 08:13
Dorothy Trustee
Dorothy Trustee's picture
Last seen: 20 min 45 sec ago
Joined: 19/02/2014 - 10:16

Hi Andy

Do you mean a static oxygen concentrator? This isn't what is used for CH. Did your GP organise it for you? If so, ask for a referral to a headache specialist neurologist. If you ring our helpline and leave your details, they'll ring you back and can advise you on the closest one to you and you can chat about the oxygen (and portable oxygen) which you should be able to get through your neurologist. There is also oxygen info in our downloads section in the menu under get support/downloads.


Dorothy (Trustee)

Tue, 06/08/2019 - 17:10 (Reply to #2)
Andy Howland
Andy Howland's picture
Last seen: 5 months 3 weeks ago
Joined: 28/06/2016 - 12:35

Hi Dorothy,

I meant static as in 'not portable'. I could do with a tank that I could take out in the car or take to work. However the neurologist I am under has told me I can only have 1 or the other!

So I can have a tank to keep at home or a tank that I can use out and about but not both!!



Mon, 26/08/2019 - 19:43
Last seen: 4 years 9 months ago
Joined: 26/02/2014 - 14:26

I have both the large (10kg?) tanks and the smaller backpack style ones (fit in a pack supplied by baywater) has been a battle though.


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