OUCH(UK) Organisation for the Understanding of Cluster Headache

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0800 6696 824

overseas +44 1646 651 979

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Advice and Information

Samaritans Contact Details

We know that CH can cause depression, and for some, very dark places with the pain and suffering and the Samaritans can help you if you reach that point. 

They now have a free to call mobile phone number:  116 123
 
and a Text number: 07725 90 90 90
 
Their national telephone number is: 08457 90 90 90.

last updated: 08/09/2017 - originally posted: 08/09/2017

The Kip Scale

Devised by the late Bob Kipple as a guide to pain levels. Contrary to the belief of some, there is no KIP 11.

 

Pain level 0
No pain, life is beautiful...
Pain level 1
Very minor, shadows come and go. Life is still beautiful...
Pain level 2
More persistent shadows...
Pain level 3
Shadows are getting constant but can deal with it...
Pain level 4
Starting to get bad, want to be left alone...
Pain level 5
Still not a "pacer" but need space...
Pain level 6
Wake up grumbling, curse a bit, but can get back to sleep with out
"dancing"...
Pain level 7
Wake up, sleep not an option, take the beast for a walk and finally fall into
bed exhausted...
Pain level 8
Time to scream, yell, curse, head bang, rock, whatever works...
Pain level 9
The "Why me?" syndrome starts to set in...
Pain level 10
Major pain, screaming, head banging, ER trip. Depressed. Suicidal.

last updated: 17/12/2014 - originally posted: 22/03/2013

Cluster Headache Basics

This is a download and print version of the Cluster Headache Basics webpage.

last updated: 16/03/2020 - originally posted: 16/03/2020

Holiday Hints

Useful for when you are travelling and away from home.

last updated: 27/09/2016 - originally posted: 10/09/2014

Cluster Headache Diary

A ready-made template for you to keep a record of your cluster headache and treatment.

last updated: 27/09/2016 - originally posted: 27/09/2016

HOOF forms (Home Oxygen Order Form)

HOOF Form

If your region has already changed over, you will need to download the NEW HOOF form.

last updated: 24/04/2017 - originally posted: 22/03/2013

Demand Valve oxygen - Part A HOOF form

This form should only be used where an oxygen company requires your GP to submit a Part A HOOF form with the details for a demand valve. See below for standard high flow oxygen HOOF form.

 

last updated: 02/10/2018 - originally posted: 28/05/2013

Handouts for Friends, Family and Colleagues

Note for Family, Friends and Colleagues

A personal description of what a CH attack is. A useful document, especially for those who work alongside you. (updated June 2015)

last updated: 16/06/2015 - originally posted: 22/03/2013

Pain So Severe

An account in layman's terms of what it is like to suffer with Cluster Headache.

last updated: 10/09/2014 - originally posted: 10/09/2014

Cluster Headache Awareness Day

OUCH(UK) are pleased to announce, in conjunction with The European Headache Federation and European Headache Alliance, we will be promoting the first ever Cluster Headache Awareness Day. This will be held on 21st March 2016.

Please print and use the posters to raise awareness. We have also included a facebook coverphoto to use on your social media.

last updated: 13/03/2016 - originally posted: 13/03/2016

Oxygen (O2) Information

IHORM and HOCF Form for New Patients

last updated: 24/04/2017 - originally posted: 24/04/2017

O2 information for Patients in England and Wales

IMPRESS Rationalising oxygen use to improve patient safety and to reduce waste - new guidlines.

last updated: 22/03/2013 - originally posted: 22/03/2013

O2 Information for GPs and Neurologists

IMPRESS Rationalising oxygen use to improve patient safety and to reduce waste - new guidlines.

last updated: 22/03/2013 - originally posted: 22/03/2013

Oxygen Therapy Notes

Some general notes on how to get the best from high flow and demand valve O2 to help abort attacks.

last updated: 11/03/2020 - originally posted: 25/02/2020

IMPRESS

The consultation for the Strategy for Services for Chronic Obstructive Pulmonary Disease (COPD) in England contains 24 recommendations for improvements in the delivery of care for people with COPD and asthma. IMPRESS has produced a guide that “recommends that one area of potential waste and ineffective care that is crying out for change is in the prescribing and ordering of oxygen.”

last updated: 22/03/2013 - originally posted: 22/03/2013

Personal Stories and Experience

Andy's Story

How one family cope with Chronic Cluster Headache.

last updated: 22/03/2013 - originally posted: 22/03/2013

Articles and Research

Causes & Current Approaches

 

The document linked above discusses the clinical features of cluster headache from a diagnostic perspective.

last updated: 03/12/2019 - originally posted: 03/12/2019

Cluster Headache Dissertation

The Invisible Invader: A Qualitative Study to Ascertain how Living with Cluster Headaches can Impact on a Person’s Wellbeing and Day-to-Day Functioning. This research was conducted in 2010/11 by cluster headache sufferer Apple O’Neill as part of her BSc (Hons) in Counselling and Complementary Medicine. Many thanks to her for letting us share this unique, valuable and well-written piece of research

last updated: 22/03/2013 - originally posted: 22/03/2013

Causes & Current Approaches

 

The document linked above is a how-to guide (clinicians) for the latest techniques on the management of cluster headache.

last updated: 03/12/2019 - originally posted: 22/03/2013

Meeting Transcripts

June 2007

Professor Peter Goadsby's presentation at the 2007 conference.

last updated: 22/03/2013 - originally posted: 22/03/2013

Surveys

Cluster Headache Survey

This is an abstract from the U.S. cluster headache survey co-authored by Dr. Todd Rozen of Geisinger Medical Center and Royce Fishman of Linde Healthcare, Linde Gas. It was presented at the 2009 International Headache Congress September 2009. This is one of two publications of the large on-line survey in which 1,134 cluster headache sufferers participated in and which involved efforts and support by OUCH, Clusterheadaches.com, the American Headache Society and others. These are excellent educational tools for you and your GP.

last updated: 22/03/2013 - originally posted: 22/03/2013

Oxygen and Cluster headache survey

This is an abstract from the U.S. cluster headache survey co-authored by Dr. Todd Rozen of Geisinger Medical Center and Royce Fishman of Linde Healthcare, Linde Gas. It was presented at the 2009 International Headache Congress September 2009. This is one of two publications of the large on-line survey in which 1,134 cluster headache sufferers participated in and which involved efforts and support by OUCH, Clusterheadaches.com, the American Headache Society and others. These are excellent educational tools for you and your GP.

last updated: 22/03/2013 - originally posted: 22/03/2013

General

Headache UK manifesto

As most are aware, we are founder members of HUK (Headache UK) along with BASH, Migraine Action, Migraine Trust and MIPCA. HUK is launching this manifesto. The manifesto has been sent to MPs with an interest in headache and HUK is asking all members to encourage their individual organisation members to write to their MPs in support of the manifesto.Please do lobby your MP.

last updated: 22/03/2013 - originally posted: 22/03/2013

All Party Parliamentary Headache Group

Here is a review of the All Party Parliamentary Headache Group (APPHG) activities carried out during 2008-09.

last updated: 22/03/2013 - originally posted: 22/03/2013

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