This is a download and print version of the Cluster Headache Basics webpage.
Downloads
Advice and Information
Cluster Headache Basics
last updated: 17/10/2022 - originally posted: 16/03/2020
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
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
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
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
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: 02/11/2022 - originally posted: 25/02/2020
IHORM and HOCF Form for New Patients
last updated: 24/04/2017 - originally posted: 24/04/2017
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
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
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
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
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
Awareness Day 2023 Poster
Cluster headache sufferers can never convey the extreme pain of CH attacks and the sense of desolation, despair, dread, fear they live with daily. CH is still often dismissed as just a bad headache, yet the attacks bring the toughest of people to their knees and women say it is worse than childbirth. Only another sufferer can truly 'know' your pain. They are the only ones who need no word of explanation.
OUCH UK is run by sufferers or supporters of sufferers. We are dedicated to ensuring sufferers are not alone, offering support and guidance on the condition and living with it.
For more info:
Advice line: 0800 669 6824 or adviceline@ouchuk.org
last updated: 20/02/2023 - originally posted: 20/02/2023
