OUCH(UK) Organisation for the Understanding of Cluster Headache

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The latest edition of our magazine CHit CHat has been published! Click the buttons below for the current and back issues.

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Please note:  No further volunteers are required for this study, owing to the high number of responses received.  Thanks to all who got in touch.  5/6/19

This is a new study looking at first-hand experiences of people living with either chronic or episodic cluster headache in the UK.  Its aim is to get a better understanding of the views of those living with the condition to find out how care and support might be improved in the future.

It will involve a short telephone interview of approximately one hour. To take part, you must be aged between 18 and 65 years old, resident in the UK and be living with either chronic or episodic cluster headache. The study is being conducted by a researcher at the University of...

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Sunday 30th June, 2019 - Shepherds Hall, St Thomas' Hospital Campus, London, SE1 7EH

OUCH(UK) are pleased to be able to return to London to present a packed event specifically for cluster headache sufferers and supporters.

As usual, the event will be a mixture of talks by Europe's best Neurologists, information sessions and an opportunity to meet and talk with other cluster headache sufferers to share experiences and make and meet new friends.

Our medical speakers will take you on a journey through cluster headache and other primary headache disorders and tell you about the current treatments available, as well as what studies and trials are on-going and what the...

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Look out for the OUCH(UK) online shop selling products to promote awareness of cluster headache. All sales help the charity to support sufferers.

Just click Shop at the top of the OUCH(UK) website to find these eye-catching items and more:

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Mike PollockIn 2017 we created a new award to honour our late chairman, Mike Pollock. We wanted to do something special in Mike's name and so now, each year, the award will go to a CH hero in the UK - someone who has shown outstanding and compassionate support to cluster headache sufferers.

There was never any limit to the help Mike offered to sufferers; he always went the extra mile, never ceasing to have the well-being of sufferers in mind - so we thought he would approve of the nature of this award.

The first recipient of the new award was Darren Hamilton,...

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We have recently been informed that there is a production problem with the Imigran injections [subcutaneous sumatriiptan] made by GSK and that they will not be back in full production until January 2019. 

PLEASE NOTE: SUN PHARMA make the generic form of the injections under the name Sun Pharma - subcutaneous sumatriptan injections.  We are informed by the relevant section of Department of Health that Sun Pharma have plentiful supplies to take up the shortfall on the GSK injections.

As long as your prescription has the words 'subcutaneous sumatriptan' on it, your pharmacist can supply either GSK or Sun injections.

August 2018

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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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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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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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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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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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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