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OUCH(UK) Organisation for the Understanding of Cluster Headache

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  1. Resources
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    Advice and Information

    The Kip Scale
    PDF icon 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
    PDF icon holiday_hints.pdf

    Useful for when you are travelling and away from home.

    New to Cluster Headache?
    PDF icon New to CH?

    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
    PDF icon cluster_headache_diary_2016.pdf

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

    Samaritans Contact Details
    PDF icon samaritans.pdf

    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.

    HOOF forms (Home Oxygen Order Form)

    Demand Valve oxygen - Part A HOOF form
    PDF icon hoof_part_a_2018_schrader_w.pdf

    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.

     

    HOOF Form
    PDF icon hoof_part_a_2017.pdf

    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
    PDF icon 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

    PDF icon Pain So Severe

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

    Cluster Headache Awareness Day
    Image icon Facebook Cover Photo, PDF icon Cluster Headache Awareness Day Poster 1, PDF icon Cluster Headache Awareness Day Poster 2, PDF icon Cluster Headache Awareness Day Poster 3

    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
    PDF icon high_flow_oxygen_therapy_2017.pdf

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

    Demand Valve Oxygen
    PDF icon demand_valve_2_2017.pdf

    Information about Demand Valve Oxygen Therapy

    IHORM and HOCF Form for New Patients
    PDF icon ihorm-form-with-hocf-oct16.pdf

    O2 information for Patients in England and Wales
    PDF icon 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
    PDF icon O2 Information for GPs and Neurologists

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

    IMPRESS
    PDF icon 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
    PDF icon Andy's story in the Sunday Post

    How one family cope with Chronic Cluster Headache.

    Articles and Research

    Causes & Current Approaches
    PDF icon wei-pn-ch-2019.pdf

     

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

    Causes & Current Approaches
    PDF icon wei-ch-aian-2018.pdf

     

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

    Cluster Headache Dissertation
    PDF icon 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
    PDF icon Professor Goadsby transcript, June 2007

    Professor Peter Goadsby's presentation at the 2007 conference.

    Surveys

    Cluster Headache Survey
    PDF icon 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
    PDF icon 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
    PDF icon 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

    PDF icon All Party Parliamentary Headache Group

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

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