OUCH(UK) Organisation for the Understanding of Cluster Headache

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#1 Mon, 27/03/2017 - 08:00
Emmxx
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Last seen: 6 years 7 months ago
Joined: 27/03/2017 - 07:26

Hi new here

Hi my names Emma,

my daughter suffers with ch and migraines I've been told she's to young  to take most medication, she was diagnosed 4 years ago it's been a living hell I've done so much research it's unreal! I resently found out about oxygen when I asked at the GP's I was told they don't do it there and to go back to her paediatrician But her next appointment isn't till may.

she has been in so much pain the last few weeks the school has her going in part time as she can't cope I'm at a lost on what to do for her and how I am meant to help her. I've seen on one wedsite about D3? And will ask about it on her next appointment.

any advice is wellcome thanks

Mon, 27/03/2017 - 13:35
Val
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Last seen: 1 day 5 hours ago
Joined: 21/03/2012 - 15:16

Hi Emma

I suggest that you ask your daughter's paediatrician to refer your daughter to the only paediatric  headache neuro that we know of, Dr Prabhakar at Great Ormond Street Hospital.

Also suggest you read this, its under 'Cluster Headache', titled 'The Basics' on this website: https://ouchuk.org/basics It tells you how to go about getting oxygen via your GP amonst other things.  This applies to England and Wales, but if you are in Scotland, you will have to ask the paediatrician to prescribe it. 

The D3 regime you refer to is unapproved and unlicensed in the UK, so its unlikely your daughter would be prescribed it.  OUCH does not advocate its use for the same reasons. 

Good luck and I hope you get sorted out, keep us posted with your daughter's progress and don't forget we do have a helpline, call the number 01646 651979, leave  your name andn umber and one of our volunteers will call you back.  All our volunteers are sufferers or supporters of sufferers.

Val

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