SPIN - Issue 112 (2024)

Ménière’s Society for dizziness and balance disorders SPIN Issue 112 (2024) In this issue… What is Hyperacusis? Celebrating Fundraising Success …and more!

2 SPIN 112 © 2024 The Ménière’s Society ’s Society Paper from responsible sources FSC® C020438 MIX ® SPIN: The Ménière’s Society Magazine Ménière’s Society The Atrium Curtis Road Dorking Surrey RH4 1XA 01306 876883 info@menieres.org.uk www.menieres.org.uk Registered charity number: 297246 Contributions to the next issue: To submit articles for consideration for a forthcoming issue, please email spin@menieres.org.uk or write for the attention of Spin to the Ménière’s Society at the above address. We reserve the right to edit all material submitted for publication. Advertising and Sponsorship: Inserts in Spin, along with quarter, half or full-page adverts are available; as well as sponsorship of Spin or other Ménière’s Society publications or events. For more information about advertising or sponsorship opportunities, please contact us (details above). Founder Mrs Marie Nobbs MBE (1922-2016) Patrons Mr Ian Chapman CBE Dlitt FRSA Ambassador Diego Kaski MBBS PhD Honorary Officers and Trustees David Renton, Chair of Trustees Pennie Ford, Vice-Chair Sara Christopher, Treasurer Spike Bromley Andrew Clements Carol Evans Colin Hughes Rory MacNeill Isabel Spence Simon Webster Disclaimer The Ménière’s Society has undertaken no investigation of any treatment, medication, exercise or diet mentioned in Spin. It makes no representation or warranty in relation to any such treatment, medication or exercise or diet and expressly disclaims any and all liability resulting from its use. The Society strongly recommends you consult your GP, consultant, specialist or therapist for professional guidance before altering, suspending or discontinuing any treatment, medication, exercise or diet. Confidentiality & Privacy Policy We offer a confidential service and will not share your details with any other organisation or individual without your express permission. Your data is stored securely and we will only use your personal information to administer your account, your membership and to provide the products and services you have requested from us. Our Privacy Policy gives more details about how we use and look after your personal information https://www.menieres.org.uk/privacy-policy. Please help us keep your details up to date. Visit https://www.menieres.org.uk/account/ to login or register an online profile with us to let us know how we can contact you and what you’d like to hear about. You can also provide this information over the phone or contact us to receive a form through the post. If you wish to change your mind at any time about the information you receive from us, or how you are contacted by the Ménière’s Society, please call us on 01306 876883 or email info@menieres.org.uk. Copyright The contents of Spin are copyright of the Ménière’s Society, as are the Society’s information sheets and publications, and may not be reproduced or distributed either physically or electronically without the Society’s express permission in writing. Spin is for the personal use of members and others to who it is specifically addressed by the Ménière’s Society. Published by the Ménière’s Society © 2024 Typeset and printed by Hobbs the Printers, Brunel Road, Totton, Hampshire SO40 3WX

SPIN 112 © 2024 The Ménière’s Society ’s Society 3 Contents Society News Welcome to Spin 112 4 Annual Conference 4 Balance Awareness Week 2024 4 Online Support Sessions 5 Articles and Features What is Hyperacusis? 6 Case Study: Ménière’s and Pregnancy 10 Case Study: My Life with Ménière’s 12 Case Study: Could Botox Help Treat my Chronic Vestibular Migraines? 13 Research Patient Public Involvement (PPI) Event for Ménière’s Patient 16 BSNO 2023 16 Fundraising and Awareness Celebrating Fundraising Success 18 Feature Fundraisers 19 A Gift in Your Will 22 Vertigo Voice 23 200+ Club 23 Ménière’s Society Merchandise Back Cover Peer Support, Local Groups and Networks Dear Spin 24 Let’s Talk Friday 24 The Benefits of Joining a Support Group 25 Support Group Listings 26 Contact a Member 27

4 SPIN 112 © 2024 The Ménière’s Society ’s Society Society News Welcome to Spin 112 Welcome to the first issue of Spin for 2024. We hope the new year has been kind to you so far and 2024 proves to be a great year. Our office team has been hard at work getting our member communications, online support sessions, and annual conference underway amongst other activities. Check out this issue and our website for further updates. Please also contact us if you have any questions or feedback. Annual Conference “Had a great day meeting with fellow sufferers. Food was amazing. I shall be returning next year for sure.” Our annual conference will take place in London on Saturday 18 May 2024 10:30—16:30. Topics will cover the latest research updates and ways to help manage your symptoms and condition. A full list of speakers will be published shortly, but will include: • Mr Yougan Saman, ENT Consultant, Leicester Royal Infirmary • Hidden Hearing Our conference brings together those affected by vestibular (inner ear) disorders with health professionals, and the trustees and staff of the Ménière’s Society. It’s always an informative and enjoyable event. During lunch and breaks there are opportunities for networking and visiting information stands. A hearing loop and speech-to-text reporting will be in place. Tickets from £42. A booking form is included with this issue of Spin. You can also book online or call us on 01306 876883 to book over the phone. We hope to see you there! Balance Awareness Week 2024 Save the Date! This year’s Balance Awareness Week will take place 15—21 September 2024. We’ll be sharing more information in the next issue of Spin. In the meantime, please ‘save the date’. You can also contact us to register interest and for more information. Email info@menieres.org.uk or call us on 01306 876883. Information will also be shared on our website: https://www. menieres.org.uk/support-us/baw. Easyfundraising Easyfundraising turns your everyday online shopping into free donations for the Ménière’s Society. How? Just start your online shopping first at https://www.easyfundraising.org.uk/ causes/menieres/ then shop as normal. The retailers will then make a small donation to say “thank you”. It won’t cost you a penny extra, but really helps us to raise funds.

SPIN 112 © 2024 The Ménière’s Society ’s Society 5 Online Support Sessions “I found it very useful and interesting to find out how other people are affected and how they cope with it. I am sure it will help me deal with the condition in future and I will join in with future meetings.” The Ménière’s Society hosts online sessions to give our members and supporters a chance to chat with us and each other about their vestibular condition and how they manage it. Meetings are hosted by the Ménière’s Society team and offer the chance for informal discussion and an opportunity to ask questions (note: questions should be of a general nature as we’re unable to give medical advice or answer questions related specifically to your own medical condition). From time to time, we’ll also have guest speakers discussing a variety of topics.. Meetings run at lunchtimes or evenings to try and give everyone a chance to attend. To register for a meeting please call us on 01306 876883 or email info@menieres. org.uk with your full name and Ménière’s Society membership number, confirming your preferred meeting day/time. Forthcoming meeting (please note time stated is London, UK) 17 April 2024 13:00—13:45 Places are limited to give everyone a chance to chat and will be allocated on a firstcome first-served basis. You will receive confirmation by email and a Zoom link for the meeting. Further meeting dates are published on our website. https://www. menieres.org.uk/information-and-support/ find-support-near-you/online-supportsessions We look forward to welcoming you to one of our meetings. Obituary: Professor Linda Luxon Many thanks to everyone who supported our annual prize draw which took place in December 2023. We are grateful to everyone who bought and sold tickets for the raffle which raised a little over £2,400 for our charity. Congratulations to our winners who have all been notified. Winning ticket numbers: First Prize: 09942 Second Prize: 05758 Runners Up: 03312; 09234 Prize Draw (Raffle) 2023 We were very sorry to learn that Linda Luxon sadly passed away at the end of 2023. Professor Luxon CBE BSc FRCP was Emeritus Professor of Audiovestibular Medicine at UCL and Honorary Consultant Physician in the Department of Audiovestibular Medicine, UCLH. Her research work promoted the academic fields of both audiological and vestibular medicine. Our thoughts are with Professor Luxon’s family, friends and colleagues.

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