News
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...
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, then tell them, we want to get as many sufferers as possible...
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...
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...
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...
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!
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...
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, promote or suggest splitting of doses of sumatriptan in any form and in...
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.
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...
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...
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...
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...
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 sufferers of such a terrible condition. Their commitment...
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 -...
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...
Give an unusual and fun Christmas present that lasts a whole year!
2014 is not far away and yet again Helen Hardwick and her wonderful group of friends have got together and produced a fun and saucy OUCH Calendar – this year pictures are all on the theme of sport! You'll never watch boxing or darts in quite the same light again! Helen's father is a CH sufferer and the calendar is Helen's way of raising funds as a thank you for what OUCH has done to help her father. Helen and her friends raise money to cover the production costs so that the...
Welcome to our new website! Due to a security breach on our old site we had to make the new site live a bit sooner than anticipated and therefore some parts are not fully-functioning yet.
The forum and online payments are not working but we are busy working hard behind the scenes updating our membership database and as soon as that is complete we will be contacting you with details on how to activate your account so please don't try and log in yet as your details won't be recognised.
In the meantime please bear with us while we get your new...
Ouch are looking to branch out and start selling mugs - here is a taster of what's to come
Let us know what you think