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OUCH(UK) Organisation for the Understanding of Cluster Headache

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0800 6696 824

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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.

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

    Cluster Headache Symptoms Poster
    PDF icon clustersymptomsposter_.pdf

     

    Cluster Headache Symptoms Poster to download, print and share.

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

    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.

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

    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.

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

    Cluster Headache Basics
    PDF icon the_basics_2022.pdf

    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
    PDF icon holiday_hints.pdf

    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
    PDF icon hoof_part_a_2017.pdf

    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
    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.

     

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

    Handouts for Friends, Family and Colleagues

    Tri-Fold Leaflet about CH
    PDF icon trifold-leaflet-2023-v5.pdf

    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

    PDF icon 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
    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)

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

    Oxygen (O2) Information

    O2 Information for GPs and Neurologists
    PDF icon o2_information_for_gps_and_neurologists.pdf

    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
    PDF icon oxygen_for_ch_2023.pdf

    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
    PDF icon 02_info_for_health_professionals.pdf

    To aid in assisting patients requesting oxygen.

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

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

    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
    PDF icon high_flow_oxygen_therapy_2022_v8_vh.pdf

    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
    PDF icon o2_information_for_patients_in_england_and_wales.pdf

    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
    PDF icon Andy's story in the Sunday Post

    How one family cope with Chronic Cluster Headache.

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

    Articles and Research

    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.

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

    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

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

    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.

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

    Meeting Presentations

    Dr Nick Silver's Presentation at the London Conference in July 2023
    File ouch_uk-nick_silver-ch-lecture-07-23.pptx

     

    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
    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.

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

    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.

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

    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.

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

    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.

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

    Awareness Day 2023 Poster
    PDF icon awarenessday-2023.pdf

    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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