Daily Round Up
Balance Awareness Week Day 7: 26 September 2020
Thank you for a great week !
Thanks to everyone who has supported #BalanceAwarenessWeek 2020. It's been a great week and your support is greatly appreciated; we couldn't do it without you. Raising awareness doesn't end here. Please continue to support our work, share our posts and talking about vestibular conditions. Together we can raise greater awareness. Become a Vertigo Voice Champion
and help raise awareness all year!
Thanks for sharing your #BalanceAware selfies with us to show your support for Balance Awareness Week 2020.
Dizziness and Me: The Hidden Disability of Chronic Dizziness Expressed Throught Art
Thanks to everyone who has contributed to the Dizziness and Me project so far. People often report that friends, colleagues, families and loved ones don’t understand what they are going through due to the hidden nature of this disability. Dizziness & Me aims to change that by asking people to 'show' us how they feel through art. Dizziness and Me was an original idea by Debbie Cane, Senior Clinical Scientist at Withington Community Hospital. The Ménière's Society is very pleased to be able to collaborate on this project. Together we can raise awareness of chronic dizziness and increase understanding among the general public, GPs, health professionals and the friends & families of those living with dizziness. Visit the Dizziness and Me section of our website
to see more and find out how to take part. Images have been submitted by those affected by a vestibular condition, as well as some by health professionals/students working with vestibular patients.
Supporter Stories: Christine
Well done and and enormous CONGRATULATIONS to Christine who, despite the weather, managed to get out and do her sponsored walk on Wednesday to raise funds and awareness for the Meniere's Society. To-date she's raised over £500. Thanks for this amazing achievement. Visit Christine's fundraising page
to find out more about her inspiring story and show your support.
Balance Awareness Week Day 6: 25 September 2020
Let's Talk Friday: Self-Management
Many people with a vestibular condition use self-management alongside medical treatment as a way to cope with their condition day to day. Do you use self-management to help your vestibular condition and, if so, what techniques do you use? Perhaps you have chosen dietary management or an exercise programme? What about mindfulness, yoga or relaxation? Have you taken things a step further and started a blog or written a book? We'd love to hear your stories for today's #LetsTalkFriday to help others who may be looking for ways to help manage their condition. Thanks for sharing and have a great weekend ��
Thanks Louise for supporting #BalanceAwarenessWeek 2020 and sending us your #BalanceAware selfie. We'd love to see some more #BalanceAware selfies - download a #selfiesign from our website and share with us ������
Supporter Stories: Esme and Jez
Hi, I’m Esme. I am 26 and a Londoner. I have been affected by vestibular symptoms on and off since I was 17 when I had a fairly textbook case of labyrinthitis/vestibular neuritis.. When I was 23 I began to be chronically affected by persistent vertigo, brain fog and other symptoms. After about a year of this, in 2018 I discovered chiropractic care, which has been incredibly powerful in relieving and managing my symptoms. In 2019 I was also fortunate to be able to reduce my working hours and the type of job I do in order to support my health. I have lots of pretty good days now, and the bad ones usually aren’t as severe - but I still have to budget my energy constantly in order to avoid flare ups.
Hello! I’m Jez. I am 26 and currently live in London. My vestibular symptoms started in November 2018; I suddenly felt light-headed, disoriented and a sense of blockage in my ears. This later turned into persistent vertigo, dizziness, dissociation, brain fog and fatigue. After seeing several specialists and undergoing all kinds of tests I was eventually diagnosed with vestibular migraine and persistent postural perceptual dizziness (PPPD) in 2019. I’ve largely been able to manage my symptoms with a combination of medication, regular vestibular rehabilitation therapy and a whole host of lifestyle changes. I still experience dissociation, brain fog and photophobia, but overall, my symptoms are much less severe now.
We created our Instagram account The Dizzy Channel to offer support, relief, solidarity and information to both vestibular sufferers and their loved ones. Providing a space for validation is particularly important to us as we both know how difficult it is to “own” our experiences with conditions that are underrepresented. We’re looking forward to connecting with our fellow dizzies!
Balance Awareness Week Day 5: 24 September 2020
Dizziness and Me
Paul submitted a video for the Dizziness and Me Project: "A few years ago I made a short film about Meniere's disease, I was filming a family event at the time, during this filming period I developed what was to be my very first attack, I had no idea what was going on at the time and kept hold of it, I later edited the footage and sound and ended up with this short film." Visit our Dizziness and Me Artwork
page to check out the artwork which has been submitted so far, as well as Paul's video. We are really enjoying seeing all the amazing art work and so much creativity!
Michelle's Story #ThoughtfulThursday
"My life changed immensely long before Covid arrived. I woke up on 13 February 2019 with my world (& eyes) literally spinning uncontrollably. I was unable to walk by myself, having the worst panic attack of my life and, once help arrived, vomiting all the way to emergency room. The following week, I was told by an ENT I had vestibular neuritis and was given a 'three month or less recovery' timeframe. Not for me. I'm still out of work and seeking answers and help. It could be long-term residual damage, PPPD or vestibular migraine; the diagnosis is still to be determined. I continue to go to many doctors and trying different therapies - most have helped, even if just a little. It wasn't until my GP convinced me to seek help for my mental health issues (which the vestibular neuritis had made hugely worse), that I started to really make progress with my vestibular issues. Apparently being in an almost constant fight or flight mode doesn't allow your body the energy to focus on healing. Now, I am learning to accept my illnesses and changed reality, and learning how to live and find joy again, but I will never stop trying to improve. Even though I have a long way to go, I'm noticing how far I've come - and I'm proud of that! For instance, I can now walk a couple blocks up my road (last summer I couldn't even go to the mailbox and had to start with a couple laps in the basement) and I can now cook a meal (when I'm up to it). I also wear Axon Optics migraine sunglasses which help so much with my light sensitivity. But, most importantly, I have HOPE. Progress is progress, no matter how slow! Keep going 'vesties', we are in this together."
Nicola has vestibular migraine. She is also one of our amazing Vertigo Voices Champions; helping us raise awareness of vestibular conditions. We are always looking for new supporters to help with the fight against vestibular conditions and help raise awareness; together we can make a real impact! Who better to explain it to do this than those who have experienced the symptoms first hand! Find out more
We want to hear your inspirational stories. Has something good come out of your Ménière's diagnosis? Did you find a light at the end of the tunnel? Maybe you’ve ended up in your dream job as a result. Share your story on social media or send it to us email@example.com and we can help share it for you!
Balance Awareness Week Day 4: 23 September 2020
Here's some more supporters sharing their #BalanceAware selfies with us, including 'Buzz' the cat making a reappearance again this year!
Christine's A Walk At the Edge
Please join us wishing good luck to Christine who is undertaking a sponsored walk today to raise funds and awareness. Due to local Covid restrictions, Christine's route has changed, but we're very pleased her walk is still able to go ahead. Enjoy your walk Christine! Many thanks for supporting us in this way, we look forward to hearing how you get on. Visit Christine's JustGiving Page
to find out more and show your support.
Spotlight on Meniere's
Ménière’s is a long term, progressive condition affecting the balance and hearing parts of the inner ear. The cause is unknown and there is currently no known cure. Symptoms are acute attacks of vertigo (severe dizziness), fluctuating tinnitus, increasing deafness, and a feeling of pressure in the ear. Nausea and vomiting may also be experienced. Vertigo attacks can last from a few minutes to several hours. Symptoms vary between people and over time; Ménière’s is an unpredictable and distressing condition. Find out more
or contact us
for more information.
Wear your Ménière’s Society t-shirt, pin badge or wristband (or all three!) with pride to help us spread the word. Wear them all week if you can! Share your pictures with us via our Facebook, Twitter or Instagram. Who will be the furthest from our office wearing one of our t-shirts, or will you be in the most unusual place? All merchandise available online visit our website and go to our online shop
Balance Awareness Week Day 3: 22 September 2020
Spotlight on BPPV
Benign Paroxysmal Positional Vertigo (BPPV) is the commonest cause of vertigo. Although it can be quite disabling, it is not due to serious disease (benign); occurs in short bursts of up to one minute (paroxysmal); provoked specifically by movement to or from certain positions (positional); dizziness defined as an illusion of movement (vertigo). BPPV is caused when loose chalk crystals get into the wrong part of the inner ear. It is estimated to affect roughly 50% of people at some stage. Find out more here...
Do you talk about your vestibular condition? Today, we’re encouraging everyone to tell a friend, colleague, or even the person you always see at the bus stop! Share with them why you’re supporting Balance Awareness Week 2020; ask them to pass it on to raise even more awareness. Use email and social media to get the word out too, especially during this time of social distancing! Encourage your friends and family to like and follow our Facebook page to find out even more.
Balance Awareness Week Day 2: 21 September 2020
We’re encouraging everyone to wear blue on Monday 21 September. We ask that participants attend work/school wearing blue clothes (with permission of course!) and that each participant kindly donates £1 to the Society. Email us
with your 'Blue Monday' photos, or tag us on social media.
Dizziness and Me
My Dizzy Life - Carly Sygrove
This week (20th-26th September 2020) is Balance Awareness Week. Charities like the Meniere's Society are running various events to raise awareness of vestibular (balance) disorders, which cause dizziness and imbalance. Most people have experienced a sense of instability at some point in their lives; perhaps from standing up from a sitting position too quickly, or from playing the childhood game of spinning around with your arms out wide until dizziness causes you to fall down. For people with balance disorders, the feelings of dizziness and instability are all too familiar.
To help bring some awareness, I am sharing a glimpse into my life with balance disorders. My balance issues became more apparent 4 years ago, after experiencing a sudden hearing loss, though on reflection I suspect they began during my teenage years. Along with profound deafness in my left ear, I simultaneously gained tinnitus, sensitivity to sounds and vestibular issues. Following my hearing loss and bouts of vertigo, constant dizziness, and instability, I have been diagnosed with two types of vestibular issues:
Ménière's Disease: A condition of the inner ear that causes vertigo, tinnitus, ear pressure and hearing loss.
Vestibular Migraine: A type of migraine that causes vertigo, dizziness, or balance problems, with other migraine symptoms, though not always with a headache.
Due to the overlapping of symptoms from my vestibular disorders, I am often unclear as to which issues correspond to which condition.
I am tired all the time. I wake up after a full night's sleep and feel as though it's the end of a long day; my body aches, my eyes find it difficult to focus and the room is never still. The effort of my brain constantly trying to maintain balance is mentally tiring. A lot of energy is needed to navigate through my days with a hearing loss and to ignore the intrusive nagging, whooshing, and ringing sounds of tinnitus—my brain is constantly being challenged. I feel disoriented in my surroundings. My head is heavy. I am unsteady. Walking is a workout for my brain—navigating myself around other people, while simultaneously trying not to walk into them. I don’t feel in control; I’m not in my body, though I’m overly aware of every movement. In environments where there are lots of visual or auditory stimuli—loud noises and voices, people moving around me, patterns in the environment—I am unstable. Floor tiles arranged in geometric patterns are a struggle to process, my head fills with pressure. Stimulation overload is all around. Department stores with their bright lighting, music, expansive arrays of items, and movement of people are a perfect combination for an immediate draining of energy. Scrolling through pages on my mobile phone and computer screen cause the pressure in my ears and head to build. Headaches are usual and migraine is regular. My eyes won’t focus on a single point, they flick continuously back to the chosen spot. I can concentrate on one task such as walking, yet a change of direction could throw my head into dizziness—the floor rising towards me. Times of concentration are brief, sporadic. Moments after eating, the buzzing starts. There is a tuning fork inside my head which vibrates obediently. My nerves are in overdrive. Did I mention the tiredness?
Triggers are numerous—stress, stormy weather, hormone fluctuations, travel, tiredness, salty and sweet foods. Sometimes I’m unable to identify a reason for a flare-up in my symptoms. A drop vertigo attack throws me to the ground with the force of an invisible hand pushing down on my head. I am conscious, though unable to fight. Violent spinning. Stuffy ears. Head pressure. Sweating. Racing heartbeat. Nausea. Loud ringing in my ears—the sound effect after someone shoots a gun in a film. I am defeated. Light-sensitivity makes my eyes hurt. The zig-zagging bright lights and blind spots of visual auras are short-lived but scary. My brain is lost in a fog during a vestibular migraine; I'm looking at my world through clouds. I feel simultaneously drunk and hungover—I’m not confident in my movements and my head is pounding. I am disconnected from my world. Sound and light are difficult to tolerate. Speaking is complex; words are jumbled in my head and arrive slowly and clumsily to my lips. I’m walking on a bouncy castle, but I'm not having fun. My feet sink and spring back upwards; my legs feel unreliable and wobbly, trying to stay upright. I'm sitting still but everything around me is moving. Parked cars are in motion; I try to avoid the space where I think they are. I remember when stationary objects were still.
Living with balance disorders has caused me a lot of frustration. My symptoms can be unpredictable and can’t always be managed—it is not possible to press a pause button on stormy weather. I feel alone in this. My symptoms are invisible to others. I don’t look ill, I’m skilled at faking ‘normal’. I continue to do most things that people with uncompromised balance systems can do, yet much more energy and concentration is required, and many naps. I worry about my condition worsening. I worry about having more vertigo attacks. I worry about losing more hearing. I’ve felt guilty for needing to rest. I am still grieving my life before the dizziness. I miss the energy I used to have. I miss silence before the tinnitus. I miss feeling well. The more I understand my condition, the more it can be managed. I hope for more research and understanding from the medical community to help develop more management techniques and treatments. I now pay attention to my stress levels. I exercise when my body allows. I eat healthily. I listen to my body and am learning to be kind to myself, allowing for rest when it is needed. I appreciate days where my symptoms aren’t too aggressive and I embrace the brighter days of my dizzy life.
Carly Sygrove is a hearing loss blogger who lives in Madrid with her boyfriend. She loves: spending time with her sister, walking in the countryside, getting lost in Madrid, travelling, going out for breakfast, her family and friends, taking photos, listening to music, storytelling podcasts, baking, running, yoga, drinking wine, and eating spicy food. In 2016 she experienced a profound sudden sensorineural hearing loss in her left ear. Following her hearing loss, Carly was diagnosed with Meniere’s Disease and more recently, with vestibular migraine. She started a blog as a way of sharing her experiences of living with single-sided deafness and vestibular disorders, and the challenges these conditions pose on her everyday life.
Balance Awareness Week Day 1: 20 September 2020
Follow us on social media and share our posts to get Balance Awareness Week 2020 underway! @MenieresSociety
Dizziness and Me
The hidden disability of chronic dizziness expressed through art. Look out for Dizziness and Me artwork during Balance Awareness Week 2020 and/or submit your own.
Last year we started the #BalanceAware Selfie. It went down so well and loads of people took part, so we wondered if we could do even better this year! Take a photo of yourself holding the #BalanceAware Selfie Sign
and share on social media. Don’t forget to tag us so we can share it too! Get your friends, family, colleagues involved as well. Last year we had people balancing with their Selfie Sign and one of our members sent us a photo from Dubai! Even if you’re not travelling this year, maybe you have a friend or relative abroad who could take a selfie as well? Let’s see how far Balance Awareness can reach and most importantly, have fun! Download and print the #BalanceAware Selfie Sign