OUCH(UK) Organisation for the Understanding of Cluster Headache

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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.

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

Cluster Headache Symptoms Poster

 

Cluster Headache Symptoms Poster to download, print and share.

last updated: 05/03/2024 - originally posted: 05/03/2024

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

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

Cluster Headache Basics

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

last updated: 17/10/2022 - 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

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

Tri-Fold Leaflet about CH

This is a very useful resource to give to people to help them understand about cluster headache. Also available to buy in the shop.

last updated: 11/03/2024 - originally posted: 11/03/2024

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

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

Oxygen (O2) Information

O2 Information for GPs and Neurologists

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

last updated: 05/01/2024 - originally posted: 22/03/2013

Oxygen Therapy for Cluster Headache

Handout for patients distributed at the 2023 OUCH (UK) summer conference in London.

last updated: 02/11/2023 - originally posted: 31/10/2023

O2 Info for Health Professionals

To aid in assisting patients requesting oxygen.

last updated: 02/11/2023 - originally posted: 31/10/2023

IHORM and HOCF Form for New Patients

Forms to be completed by clinician and patient when oxygen therapy is prescribed.

last updated: 02/11/2023 - originally posted: 24/04/2017

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: 31/10/2023 - originally posted: 25/02/2020

O2 information for Patients in England and Wales

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

last updated: 05/01/2024 - 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 Presentations

Dr Nick Silver's Presentation at the London Conference in July 2023

 

These are the slides to go with the talk given by Dr Nick Siolver which was about the current clinical picture of cluster headaches and treatment.

The video can be viewed here: https://www.youtube.com/watch?v=Yj5Uz7o0XmI

last updated: 08/01/2024 - originally posted: 08/01/2024

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

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

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