Ep 5. Searching for Answers

Spotlight Series | Heads Up Podcast Isobel West has lived with cluster headache since the age of fifteen. Misdiagnosed for years and left to advocate for herself, she eventually found her way to the correct diagnosis at twenty-one. Now she is channeling that experience into a PhD at Kings College London, investigating the brain mechanisms behind the condition through studying human post-mortem brain tissue donated by individuals who lived with cluster headache and generously donated their brains to research, in collaboration with King's College London. In this episode, she joins our host, Dr Katy Munro, to talk about what it means to be both a patient and a researcher, why diagnosis takes so long, and what her work could one day mean for others living with cluster headaches. https://cks.nice.org.uk/topics/headache-cluster/ https://ouchuk.org/advice-line *The reference to the study Isobel quoted is here: Frederiksen HH, Lund NL, Barloese MC, Petersen AS, Jensen RH (2020) Diagnostic delay of cluster headache: A cohort study from the Danish Cluster Headache Survey. Cephalalgia 40(1):49–56. 10.1177/0333102419863030.  DD of 18.8 years in age of onset below 20 yrs DD of 5.4 years in age of onset 20-40 yrs DD of 2.1 years after 40 yrs.* *Disclaimer* This podcast episode contains discussions about cluster headaches, including topics that may touch upon sensitive subjects such as mental health and suicide. While we strive to provide informative and supportive content, we acknowledge that these discussions may be triggering for some listeners. If you or someone you know is struggling with mental health issues or experiencing thoughts of self-harm or suicide, we urge you to seek support from a qualified healthcare professional or your GP. For emergency call 999 helpline immediately. Your mental health and well-being are important, and help is available.   Listener discretion is advised. The Heads Up podcast is provided for general information only. It is not intended to amount to medical advice on which you should rely or to advocate or recommend the purchase of any product or to endorse or guarantee the credentials or appropriateness of any health care provider. The National Migraine Centre is not responsible for the views of those featured on this podcast and does not endorse, approve, or certify their recommendations or opinions, and information from this podcast should not be referenced in any way to imply such approval or endorsement. No material within this podcast is intended to be a substitute for medical advice, diagnosis or treatment. You must obtain professional or specialist advice before taking, or refraining from, any action on the basis of information provided in this podcast. Do not begin a new medical regimen, or ignore the advice of a medical professional, as a result of information expressed in this podcast, this website or from any of the sources of information to which we may link. By accessing this podcast, you acknowledge that the National Migraine Centre makes no warranty, guarantee, or representation as to the accuracy or sufficiency of the information featured in this podcast. Any hyperlinks or references are provided for your convenience & information only. We have no control over third party websites and accept no legal responsibility for any content, material or information contained in them.