OUCH(UK) Organisation for the Understanding of Cluster Headache

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Posted: September 7, 2017

Yet another first for OUCH (UK), we were invited to attend the first ever Global Patient Advocacy Summit at the 18th Congress of the International Headache Society in Vancouver and Trustee Scott Bruce is representing OUCH along with representatives of 48 other patient organisations from all over the world.  The IHS is an organisation of headache neurologists and health professionals and they produce the internationally recognised headache guide for health professionals.  This is the first time that patient advocate groups have been invited to attend the IHS congress, and represents recognition of the valuable part that the various groups play in supporting patients in finding diagnosis and treatment.

You can read the press...

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Posted: June 8, 2017

Dear Member
 
We need your help and support to ensure that demand valve oxygen therapy, a cause close to the heart of our late chairman, Mike Pollock,  becomes a standard oxygen therapy for cluster headache.  This is a very fast-acting, safe and cost efficient method of oxygen therapy, using a mouthpiece similar to that used in entinox therapy.  The demand valve opens as you inhale and shuts off the oxygen as you exhale; it is not blasting out at 15 litres a minute all the time.  A cylinder can last several times longer using DVO as opposed to the standard high flow oxygen.  
 
At the present time the DVO is approved for NHS prescription, but as it is termed an optional to the oxygen supply contract, the oxygen...

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Posted: May 2, 2017

 
Cluster Headache Imaging Study. Brain Activation during Cluster Headache - BANG-CH
 
OUCH (UK) is delighted to continue to support the study that is being undertaken at Kings College Hospital in London and we are inviting you to take part. If you really want to do something to help your fellow sufferers, then here is an opportunity for you to do just that.
 
These are the details from Kings College Hospital.
 
If you know other sufferers who qualify under the criteria given above,...

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Posted: March 17, 2017

Tuesday March 21st – Cluster Headache Awareness Day.
 
There are two events planned for Cluster Headache Awareness Day; a gathering at the House of Commons organised by the Headache Centre, Guy's and St Thomas' NHS Trust and hosted by Mr Jim Fitzpatrick MP, chair of the All Party Parliamentary Group on Headache Disorders. Amongst the speakers will be Trustee Elizabeth Kelly speaking on the work of OUCH(UK) in supporting sufferers and their families, and member Carolyn Matheson will give an overview of life with cluster headache. NB all places for this event have been taken up.
 
There will also be a Cluster Headache Awareness Evening on 21st March 2017, at the Walton Neurological...

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Posted: January 5, 2017

This may be the first time that not just a TAC sufferer can do something positive to make the DWP work benefit system better, but their families and friends also. It is a HUGE opportunity for every member and their families to do something really positive and we strongly urge you to take part in this consultation.

OUCH has representation, through Headache UK, in the All Party Parliamentary Group on Headache Disorders. At a recent meeting in the Commons, our newly appointed representative, trustee Elizabeth Kelly, addressed the meeting on her experiences as a disabled person with the DWP and other government departments. It was a powerful and well-received address. Elizabeth was approached by the DWP representative at the meeting...

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Posted: November 15, 2016

Finding the cause of cluster headache is a vital step towards finding the cure for this disease and The Institute of Neurology are undertaking a new study into the genetic basis of cluster headache. All they need from you is some details of your family CH history and a small sample of blood, but this study is special in that non-sufferer family members can get involved too. Read the details below and see if you and your family qualify to volunteer for this very important study.

Finding the Cause of Cluster Headache

Study Outline:

We currently know very little about the cause of Cluster Headache, however, we do know that this condition can run in families. This suggests a potential genetic basis...

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Posted: July 14, 2016

OUCH (UK) is delighted to welcome two new volunteers to the OUCH helpline, Emma McAteer and Linda Duddy, both of whom hale from Scotland.  They have successfully completed their helpline training and Helpline Manager, Liz Kelly, has instituted a new means of training by using group video calling on Skype.  Welcome to the team Emma and Linda!

Posted: March 12, 2016

OUCH(UK) are pleased to announce, in conjunction with The European Headache Federation and European Headache Alliance, we will be promoting the second Cluster Headache Awareness Day. This will be held on 21st March 2017.

We welcome fundraising efforts by our members for this day, and we have created a Cluster Headache Awareness Day poster for you to print at home, and up in your workplace, local GPs, and in your community.

We are of course happy for you to download and print your own awareness posters. they are located in our downloads section under handouts for friends, family and colleagues.

If you are planning to promote Cluster Headache Awareness Day in your local area and need further information, please email...

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Posted: December 9, 2015
There have recently been posts on both the OUCH Forum and Facebook page suggesting and detailing how to split doses of subcutaneous sumatriptan [Imigran injections].  While some neurologists do explain to their patients how to do this, the fact remains the practice is off-license and remains the responsibility of the neurologist or health professional concerned. 
 
For clarity, as we are not health professionals and acting on professional advice, OUCH will not advocate,...
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Posted: November 24, 2015

The scope of the trial has been widened to include chronic sufferers of CH as well as ECH sufferers. Volunteers of either status are urgently needed to move forward this important drug trial. For more details, please contact info@ouchuk.org stating whether you are ECH OR CCH for the criteria of each trial. If you do one thing for CH this year, make it participation in this trial.

Posted: September 8, 2015

Following the sad death of our chairman, Mike Pollock, an extraordinary general meeting of the Trustees was held to elect a new chairman.  OUCH is delighted to announce that our patron, Professor Peter Goadsby,  accepted nomination as chairman and was elected unanimously.  The Professor is now based at King's College Hospital and will be the keynote speaker at our London meeting in November.  He has been a staunch supporter of OUCH since its inception in 2001.  In 2001, one of his clinics was running late and several patients started talking to one another and discovered they all had cluster headache.  They then met up online and OUCH was formed in 2001 and became a registered charity in 2002; OUCH owes its existence to our new chairman...

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Posted: August 7, 2015

If you've ever said you wanted to do something to help sufferers and you are a sufferer yourself, well here is your opportunity!
 
Study of CGRPss in Episodic Cluster Headache
 
Professor Goadsby at King's College Hospital, London is looking for volunteers for an important study of CGRPs [calcitonin gene related peptides] in episodic cluster headache sufferers. The criteria for participants for the CGRP TRIAL have been amended:

  • The participant needs to be an episodic or chronic sufferer;  if episodic within first two to three weeks of cycle; can be at very start of the cycle but need to have 8 weeks of cycle left after enrolling to this trial; chronic sufferers,...
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