OUCH(UK) Organisation for the Understanding of Cluster Headache

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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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Posted: February 13, 2015

If you use the Sun Pharmaceuticals sumatriptan injections, please be aware that we have been informed their production site for the injections is being shut down for maintenance and the injections will not now be available until early 2016.  
 
However, we have been informed that Glaxo Smith Kline who also manufacture sumatriptan injections have sufficient supplies to meet the extra demand.  
 
If your prescription specifically states 'Sun injections' just ask your GP to amend it to 'sumatriptan injections' and the GSK ones can be substituted.  
 
Any questions or queries on the above, please e-mail info@ouchuk.org or call the...

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Posted: August 6, 2014

We are delighted to announce our next meeting will take place on October 19th in London in the Governance Hall at the world renowned St Thomas' Hospital by kind permission of Guys & St Thomas Hospitals Trust, Dr Adnan Al-Kaisy Clinical lead and Consultant in Pain and Neuromodulation and Dr Giorgio Lambru, consultant neurologist of St Thomas' Hospital Headache Team.   This will be a very special meeting as we have some topline speakers.
 
Speakers so far confirmed are: 
 
Professor Peter Goadsby, our patron and director of the Welcome Trust Neuroscience research facility at Kings College Hospital;
 
Dr Giorgio Lambru, Consultant Neurologist and Lead of the Headache...

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Posted: March 26, 2014

To celebrate turning 60, I thought it would be the perfect reason to run one final marathon. 

Over the past few weeks, my friends and running pals have supported me in my training. In order to help motivate me over the course of the 26.2 miles, I would appreciate any contibutions towards my target.

My chosen charity is the Organisation for the Understanding of Cluster Headaches (OUCH UK). This fantastic charity has provided continuous support for both Bev and I as well as all of the other...

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Posted: January 31, 2014

OUCH is delighted to announce the member’s forum and online payments will be operational from 26 February.  We apologise for the delay in making this available, but we can assure you we have been working hard behind the scenes to replace the hacked website and forum.  An e-mail will be sent to all members with a one time only password to give you access both to the forum and your own account and instructions for how to do this will be included and what to do next.
 
The site may be unavailable at certain times in the next couple of weeks - please don't worry as we are carrying out vital updates that require the site to be offline for short periods. Thank you for your understanding and patience.
 
31/01/14

Posted: December 17, 2013

Mike Pollock, OUCH’s chairman addressed Westminster’s All Party Group on Primary Headache Disorders during a meeting held in the House of Commons on December 11. The All Party Group has a particular interest in headache types such as migraine, trigeminal neuralgia and, of course, cluster headaches. The Group has around twenty members from a number of political parties and includes MPs as well as members of the House of Lords.

Mike explained the real challenges faced by those who suffer from CH and showed the Group the variety of treatments used to abort attacks such as sumatriptan injections, a gammacore device as well as an oxygen cylinder.

Other speakers included medical specialists who sought to give professional...

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