Migraine Variant Balance Disorder: My Experience

How yoga and meditation changed my life forever

Reading Time: 8 minutes

Hello, I’m Charli, a British based wedding photographer. I am from Kent and adore the countryside and the smell of freshly cut grass. I love nothing more than spending time in nature and finding gratitude in each day. I am a normal woman with big (sometimes crazy big) dreams and I love to help people and make others smile. Over the past three years, I’ve gone through some life changing experiences in my life, involving illness and other challenges, the outcome of which have changed my life completely. I’m keen to share my story with others and am grateful to Annabel for encouraging me. It’s hard to know where to start to be honest, so I’m going to take it back to my school years.

School wasn’t necessarily the easiest for me. I worked very hard but was not naturally academic. Some people can just ace exams – I had to work myself into the floor to get half decent grades (as a side note, I have very recently become a member of Mensa – a little life lesson that you should never give up). Still, I was incredibly ambitious and dreamed big.

As a teen, I watched the movie Legally Blonde and decided there and then that I wanted to be a Lawyer (really, I just wanted a dog and to help people – it just so happened that the main character in the movie was a Lawyer too!). Whilst at school, I experienced awful bullying. It didn’t matter what it was – my hair, weight, teeth, eyes, clothes – you name it, I was targeted for it and bullied relentlessly.  As a result of this experience, I began to throw my whole self into my studies, spending much of my A-levels with my head buried in books, preparing to escape school and set myself free into the real world, where I was becoming increasingly more convinced that I could be a lawyer and help people. That was the aim. I flung myself into a law degree at university and moved out of my family home to live in Greenwich.

University was, by far, some of the most fun years of my life. I had a work hard, play hard approach during this time, but isn’t that was University is for? Throughout it all however, I never lost sight of my end goal – I wanted to help people. I achieved an Upper Second Class Honours in Law and was overjoyed – it felt I was a step closer to my dream. I then studied for two years at law school whilst actually working in law and finally passed all my law school exams in 2009. But because I’m probably a bit crazy, I then went on to obtain a Masters in Commercial Law. By the time I finished my studies, having achieved a distinction, I had nothing left to give academically! I had been studying for what felt like forever, but I wasn’t really seeing what I had dreamed of – helping people, making people smile. What I was seeing was a lot of very exhausted people, working themselves into the ground, burning themselves out. And the worst part of it all, was that I was one of them.

I had always loved taking photographs – I loved capturing moments. Not staged, cheesy moment – just real snapshots in time. I’d been taking photographs for family and friends for a while whilst I was studying and I launched my photography business, officially, in 2006, at the ripe old age of 21. It took a few years to really get the ball rolling and to invest into the equipment I really needed to run a professional photography business however. I didn’t want to offer a something semi-ok – I wanted to provide a luxury wedding photography service all over the world. I shot my first wedding for just £150, having never captured any nuptials before! I was technically knowledgeable and had a creative eye but still, I won’t lie, that wedding was the most nerve-wracking day!

As I built up my business, I faced many challenges, the kind of which arise when you are working a full time job (which I was, in Legal) and trying to set your own business up at the same time. Ever heard of the term ‘weekend warrior’ – it’s one thrown about often in photography circles to describe individuals who earn money shooting photography when they can fit it in around their day job, ie, at the weekend. But I have to laugh at this concept, because never mind weekends – I was working all hours, non-stop! I’d get in at 7pm in the evening and work on my business until 1am and then I would go to bed ready to do it all again the next day. But, I didn’t care – the feeling of seeing how happy couples were seeing their wedding photographs is still one that I cannot put into words. I was giving and I was making people smile.

You cannot be anything to anyone if you cannot even be yourself. Health, wellness and self-care are so important.

But, as anyone who has ever set out to start their own business will tell you, juggling so many roles is very difficult. I was trying to wear so many hats: PR, marketing, accounting, editor, photographer, social media manager, client care, business owner. Some days it would be easy to forget why I started. Some days, when I was struggling to edit through hundreds of photos I would just cry. I adored what I did but I was losing control of my life and I wasn’t looking after myself. If there’s one thing I’ve learnt since, it is that looking after yourself absolutely comes first. You cannot be anything to anyone if you cannot even be yourself. Health, wellness and self-care are so important.

It’s taken years to refine my workflow and my business but five years ago, I finally cracked it, and it all just fell into place.

I turned 30 in 2015 and everything was perfect. I had a successful wedding photography business, I was capturing weddings in the UK and overseas. I’d won awards for my work and had my work feature  in magazines and top wedding blogs. Then, out of nowhere, in September of that year, it all came crashing down. My body crashed and I woke up with a long term illness that turned my life upside down.

After six weeks of misdiagnosis, I was finally diagnosed with Migraine Variant Balance Disorder. Oddly enough, this doesn’t actually involve migraine headaches, but it does stimulate the same set of chemicals in the brainstem that cause migraines, causing symptoms like dizziness, nausea and vomiting, balance problems, extreme motion sensitivity, a sense of disorientation, confusion and unsteadiness and sensitivity to sound. It is a chronic and serious, neurological disorder. And it’s absolutely awful. My body’s balance system wasn’t working properly anymore. I was constantly feeling like I was going to black out and experiencing anxiety, panic attacks, vertigo and retinal migraines.

There was no respite. It was constant. I couldn’t understand what had happened. I’d been out for a run on the Sunday, full of energy, full of love for life – and quite literally, it all came crashing down around me overnight.

I’ve always been incredibly strong and positive, but this, I struggled with. I found it difficult to even hold my own head upright. Everything I took for granted about my health was gone; walking was a struggle and I was getting more anxious by the day.

My photography business was continuing to grow and I decided to just be honest with all of my couples – thank the heavens they were all wonderful and understanding. There were a lot of things I had to stop eating and my lovely wedding couples even arranged special meals for me on their big days. I’m incredibly lucky for the generosity shown to me during what was a very difficult few years. I’m also not naive to the fact that there are people with much harder conditions and illnesses than this who have to juggle work, life and family – and that’s partly what kept me going.

I was, however, in a state and wasn’t coping well at all when I stumbled across yoga and meditation. Three years on from this discovery, and it has utterly changed my life.

Throughout the last three years I have gone from only having the energy to lie down and meditate, to creating a home based yoga practice where I have built up strength both physically and mentally. I’m still not fully recovered – I’m still on medication, but yoga and meditation has and continues to help me heal. Because yoga isn’t just something that stretches you; whilst I have gained incredible flexibility, what I’ve really gained through this practice is a peace of mind, an ability to calm myself in situations, to deal with my own emotions, to love myself and give myself and my body the love and nourishment it needs to not get ill…

Yoga has enabled me to pursue my passion for photography and run my business. Last year, I was even featured in British Vogue – had I told my 21 year old self that, I would have laughed..

I know many people who have discovered life-changing style relief for migraine through yoga – the founder of this site, Annabel, being one of them. When you suffer such a debilitating neurological condition, you want to leap up and shout to the world when you find something that helps and relieves your symptoms! I have a strong desire now to pass one what I have learned to others – to help them smile on the worst days. Anyone who is unfortunate enough to experience regular migraine will know how difficult it is to get through the bad days. I would love to help these people smile on those bad days and to let them know they are not alone.

In addition to my wedding photography, I am off to Bali for three weeks this year for yoga teacher training. I’ve set up my YouTube channel which features videos about my illness but also yoga and meditation videos to help others.  My yoga business, Charli Louise Yoga, will launch in Winter 2018.

I’ve learnt an awful lot thanks to my illness. I now look at my illness with gratitude. Sure, I have bad days still but when I sit still for a moment, I realise that actually, my illness helped me to achieve my dream to help others and to make people smile. And I will continue to do that for the rest of my life.

When I was speaking to Annabel about writing an article for A Life Loved, we spoke initially about entrepreneurship and how I could talk about setting up my photography and yoga businesses, but, I really hope this is much wider than that. Through sharing life experiences, and reminding others that life can be messy and get painful at times, we can offer a helping hand to those who need it. My life isn’t perfect – some days it is really hard! But I have learned that when you follow your heart, you learn to find gratitude, even in the most painful and challenging of moments. You can channel the energy into good and use it to help other people. If sharing can help people then that is what we should do.

If I could go back to my 21 year old self and give some advice it would simply be to take some time for her. I would tell her to look after herself, both mentally and physically – to eat well, sleep well and rest.

There is a quote that I’d love to leave you with:

“I’m going to make everything around me beautiful, that will be my life” — Elsie de Wolfe.

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8 Comments

  • I am 68 years old, have been told my balance organ has been damaged due to medication given to me intravenously, that was 8 years ago and slowly over the years my balance has got worse. I can no longer walk unaided every day life is an effort, do you think yoga will help me? For a start, I cannot even sit how you were sitting cross legged, how do I sit? Would love to give it a go to see if it will help me. Thank you

  • Hi Laura!

    I am so sorry to hear about your balance issues – I understand completely how debilitating a loss of balance can be.

    Yoga is fantastic for balance and I would recommend that you look locally for a yoga therapist that teaches on a 1-2-1 basis that can help you to regain some balance. Yoga videos are great but sometimes you need hands on help for more debilitating conditions (especially if you have no, or very little, prior yoga experience).

    If you want to sit to do some of the breathing exercises/meditation then you can do these simply sat on a chair with your spine in a neutral position (e.g not slouched over or the reverse). You can also do these lying down on a flat surface rather that sitting up (you can pop a blanket under your head to support you).

    I hope this helps.

    Best
    Charli

  • I couldn’t believe just how much you have achieved at such a young age. You are awe inspiring, courageous and disarmingly honest. You have no idea how many people this article will help. Thank you.. it was the reminder I needed hear.

    • Thank you for such kind words Diane, that means a lot. It will sound silly, but I’ve never really considered myself an achiever. I know I work very hard and am proud of everything I have done but it is only recently that it feels like everything is coming together.

      I think it is so very easy to get lost in the everyday challenges and forget why we start doing things. The bigger picture, which starts with a healthy and balanced self.

      X

    • Hi Christine

      So sorry to hear about your recent diagnosis.

      I do hope my YouTube videos can help you a bit in coping with this illness.

      It’s a challenging illness and it can sometimes leave you feeling very frustrated so do contact me if you ever need to talk.

      It’s very important to know that you are not alone. All the support of family and friends and yet you can still feel trapped inside your own real life nightmare some days with this illness; you just have to be a bit more gentle with yourself on those days.

  • Hello! Just stumbled across your blog and I can tell I will be one of your biggest fans. Thanks for having the courage to share your experience. I have so many physical issues I won’t list them all, but the major ones are leukemia, IBS, and vestibular issues undiagnosed as yet, but probably the major one being BPPV. I also have arthritis and never been able to do the yoga poses although I’ve tried and even took a class. Disappointing to not be be able to do the things you know will make you feel better. My instincts tell me yoga would help my IBS. Are there specific excercises/poses I could try for this?

    • Hi Karen

      Thank you for taking the time to read my article and to leave a comment.

      Yoga classes can (sometimes) leave you feeling a little deflated if you have health issues to contend with. The problem tends to be that they are generalised for categories (beginners etc) with very few dealing with yoga as a therapeutic application.

      I couldn’t attend classes when I first started as I was, quite frankly, too unwell. I started researching restorative yoga and meditation and started doing yoga myself at home, knowing my own limits and pushing myself slowly.

      There are a lot of poses for IBS and in fact in the coming few months I will be popping a video on my YouTube to help with this. My medication and illness caused me many digestive issues!

      You may also find meditation useful for your IBS, as well as pranayama (yoga breathing exercises).

      I would recommend that you maybe try to find someone local to you who offers 1 on 1 private yoga therapy that can guide you through some at home sessions so that you then have the tools to help yourself going forwards.

      I’m so sorry to hear of all that you are coping with – I do hope you find some solace in yoga and meditation.

      Charli

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