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Helpline

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OUCH(UK) Organisation for the Understanding of Cluster Headache

Downloads

Advice and Information

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.

Holiday Hints

Useful for when you are travelling and away from home.

New to Cluster Headache?

Well you’re probably still getting your head round the fact you have a pretty nasty neurological disease that you’ve probably never heard of before.  So what do you do now? Download our guide and find out!

Cluster Headache Diary

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

HOOF forms (Home Oxygen Order Form)

Demand Valve oxygen - Part A HOOF form

This form should only be used where a sufferer has volunteered to take part in the demand valve trial and NOT for standard high flow oxygen prescription.

For more details on the demand valve trial e-mail info@ouchuk.org
 

HOOF Form

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

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)

Pain So Severe

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

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.

Oxygen (O2) Information

High Flow Oxygen Therapy Notes

Some general notes on how to get the best from this method of aborting attacks.

Demand Valve Oxygen

Information about Demand Valve Oxygen Therapy

O2 information for Patients in England and Wales

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

O2 Information for GPs and Neurologists

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

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.”

Personal Stories and Experience

Andy's Story

How one family cope with Chronic Cluster Headache.

Articles and Research

Causes & Current Approaches

From "Prescriber" - an article by Dr Manjit Matharu.

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

Meeting Transcripts

June 2007

Professor Peter Goadsby's presentation at the 2007 conference.

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.

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.

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.

All Party Parliamentary Headache Group

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