Let’s Talk Vestibular Disorder

In March of 2019, I was diagnosed with vestibular migraine with aura and vestibular damage. Put simply, it’s a torturous balance disorder that takes complete functionality away from your body – from you. Since then my life has been devoted to healing as I battle this chronic illness. Writing has become my saviour throughout this overwhelming time. I write to reflect, to set new goals and now, to communicate. 

Chronic illness is all encompassing and painfully isolating. It is debilitating, confusing and scary. There is no escape. You are the only one that feels it, sees it and has to suffer through it. Suddenly you have to face a completely new reality, with the only option being to cope, to heal. Are you struggling through chronic illness too, or supporting someone close to you? I’ve been through a lot with this disorder, so I want to share my experience and things I wish I had heard in the hope it can help someone else battling a chronic illness or shed awareness and understanding. To begin, I’ll explain what vestibular disorder feels like, how debilitating chronic illness is and what the biggest mental battles are early on and throughout recovery.

How it started

I went through months of torment and misdiagnoses. The longer I was misdiagnosed and prescribed wrong medications, the more damage was done neurologically; and I suffered. Six months, eight doctors and too many gruelling tests later I found myself sitting in front of my neurologist with those diagnosing words hanging around me – vestibular migraine with aura and vestibular nerve damage. What on earth does that mean? All seemingly simple words, with only one I didn’t recognise. But these words hold such heavy meaning. At this stage I didn’t recognise my own body anymore, I could not function at all. Hours, days and nights weren’t different from one another. 

By the time I was properly diagnosed I had basically no balance system left. I couldn’t stand still with my eyes closed – or open for that matter – without falling. I would fall to the left unaided and had no control over my body’s movement. I lived in a constant state of floating motion. There was no synergy between my physical body and my balance system. My head was excruciating and unbearable; a mixture of piercing pressure, constant fogginess, wooziness and extreme pain. 

I couldn’t think. I couldn’t speak. I couldn’t see straight, my vision constantly distorted. I couldn’t feel the floor under my feet or recognize where my body was in my surroundings. I could barely walk, my body constantly rolling. Dizzy beyond belief. My ears rang incessantly, making a ‘swooshing’ sound that flicked in and out. My head so unsteady on my shoulders it could have fallen off. This internal movement caused relentless nausea all day and night, vomiting and dry reaching. My eyes constantly ached. An invisible band across my forehead that never left, just tightened and tightened. My senses were enhanced to the extreme, causing my neural system to overwhelm. All lights were excruciatingly bright, sound intolerable, smells so intense and my body temperature at an all time high. Any clothes I wore were too much on my skin, too tight even at their loosest. My body a swollen ball of what it used to be from a combination of stress and numerous medications. 

At times it all reached such excruciating levels that my heart would race and my body would shake. I fainted. Over and over again this light-headedness would haunt my days. My eyes would gradually blacken from the outside inwards, ringing in my ears and pressure in my head would increase and I would get unbearably hot. Luckily my mum would often be with me to catch me or break my fall. But this lack of control of your own body is terrifying, and the scariest part is there is nothing you can do to stop it.  

This is a snapshot. I never had a break from the pain or the sickness, only some hours less excruciating than others. 

I remember one-day midway into that 6-month period of misdiagnosis being petrified when I physically couldn’t coordinate my hands to take medication. My hands were shaking and numb, everything spinning around me, floating out of body – I tried to get the tablets in my mouth and water bottle to my lips. I was so scared of what my body was doing to me. At that moment I just knew something was really wrong but I didn’t know what – and that was the worst part; not knowing what was going on inside my body, or happening to my brain.

The strange thing is as I got worse and waited for a correct diagnosis and treatment plan; I smiled and laughed, hid that terror and tried to carry on and do things I definitely shouldn’t have. I think I did it more for everyone else around me than myself. When I would be with others and it all got too much, I would go to the bathroom and just cry until I built up the courage to go back out and face everyone again.

So to finally receive my diagnosis was relieving and yet distressing. My immediate questions were ‘when would I be better and what does recovery look like?’ Unfortunately the answers weren’t as I expected or easy to swallow. To summarise, I was told recovery is a long road and different for everyone. Two years at minimum with a warning that it will be a “new normal” I will have to get used to at a certain point of this “lifelong disorder”. I was instructed to give my brain a complete rest: stop working, studying and stay in a dark and calm house for at least a couple of months. Other life-changing terms and conditions were raised. Words like ‘stroke’ followed by ‘emergency appointments’ and advice about certain medications followed. I think that’s when the zone out and overwhelm came. Hearing about all the different classes of drugs used to treat this disease, their side effects and what my neurologist recommended for me. The danger of this disorder coupled with certain medications I was already on. The zone out wasn’t just from that room, it was from the reality I was now in.

For me, post diagnosis came the hardest struggle – acceptance.

The Grief in Healing

It is one thing to hear your diagnosis, but another to accept it. Understanding and acceptance are multifaceted, it changes all the time – as you take a few steps forward, and then you get worse again, as you encounter new things, as medications are adjusted, as you miss things; and as your mind has to keep up and accept that ‘new normal’ each time. 

It took me at least a whole month post diagnosis to properly digest it all. To accept that this isn’t temporary and there is a long road ahead. That I need to rigorously retrain my brain to connect and communicate with my body to understand spatial awareness again. That I need to take medication, that it needs to be drip-fed up to a certain dose over many months. Did taking the medication frighten you as much as it did me? I essentially had to learn to be and walk again while responding to medicine – and trust that somehow this would help me. 

I had this warped idea that I would miraculously wake up in a week or month from now completely fine, and it was all a terrible dream. I mean how could this happen to a 25-year-old girl?

But accepting this reality is crucial to recovery – I have a vestibular disorder. It was only me that could take the medication, do the brain retraining exercises (that made symptoms so much worse for a long while). Only I could go see my neurologist every month or two and my vestibular physiotherapist every fortnight. I had and still have to accept what has happened to me, listen to my doctors and let them guide my progress. Taking on these things is the only way forward. 

Letting go of who I used to be and what I planned for my future was another obstacle. This bled into grief. Grieving myself was one of the biggest initial hurdles. It’s something that isn’t natural to do, for yourself that is. It’s important to grieve the person I used to be and the girl I knew. I can only thank my psychologist for helping me acknowledge this. Everything was going to be different and when I accepted that, I had more of a chance to move on both physically and mentally. Without this grieving process, I was perpetuating this initial torturous stage by not believing that I was actually sick and there was a medical diagnosis. I was also teasing myself that I could make a quick and pain free recovery. 

I was not used to anger; it’s something that’s thankfully not been common in my emotional repertoire. But now I’ve had to acknowledge, ride out and allow it as it comes up. Anger, sadness and disbelief. Grief.

Grieving myself looked a bit like this: 

  • Crying an extreme amount (which then made my head even worse from the increased pressure. This would make me even more upset about not being able to really be sad without my vestibular system making me suffer more). 
  • Thinking about the plans I had for my future. 
  • Thinking about and letting go of who I knew myself as.
  • Thinking about who I am to everyone around me.
  • Thinking about what I can do, in this state. 
  • Sitting in silence. 
  • Being comforted by my amazing family and friends. 
  • Watching my little 1-year-old puppy (who usually had an annoying amount of energy) just sit with me. He would look at me and lie with me for hours, as I let myself cry.

Grieving let me reach acceptanceIt let me look this illness in the face and choose to fight it. It let me start my healing. Grieving is unfortunately something that I will continue to encounter as I learn more, suffer through more and am forced to miss things. Trust me when I say, acceptance will change every time you do something new. Every time you progress. Every time you have setbacks and endure limitations.

Reinhold Niebuhr said, “…Accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.” This mindset is so important and here’s how I realised it: Be realistic, for your own sanity; accept what you’re going through. Work hard to make small changes at a time; progress is slow but so unbelievably rewarding when you see those little wins and learn what doesn’t work for you either. This is what you can control – so don’t aim for things outside of it. Most importantly, be kind to, patient with and forgiving to yourself. Let yourself grieve and accept what comes with this however you need to.

What Sick Means

For me, ‘sick’ has a different meaning. I’ve thought long and hard about this – how can I word it to help explain my illness to the people supporting me and to those that want to know? 

It’s not a virus or something acute that will heal quickly and it’s not a terminal illness. It is in the middle. It is constant. It is unimaginably painful. It is hidden from others but takes over my whole being. It isn’t fixed with surgery. It is relentless, soul crushing and a new reality I will live with and manage forever. Any forced or perceived movement outside of my own body triggers my symptoms to worsen. It is a vicious cycle I can’t escape. 

Among many other things; I can’t go for short or long walks anymore, watch TV freely, look at screens easily, listen to music loudly, speak for too long, be in a full or busy room, turn around quickly, see traffic pass me by or anything move swiftly, drive, read too much, bend down to pick something up or open my eyes in the morning without pain, brain fog and pressure.

So remember, this isn’t easily explainable or understandable. If you’re the person suffering through this, you don’t actually have to explain yourself. What you’re going through is hard enough to cope with. If you’re struggling being the support for someone in this position, imagine how hard it is for them – not only are they experiencing it and trying to explain it to you, but they are also desperately hoping for some respite from it all. Don’t question them and the medical team treating them. If they are confident and coping, take comfort in that.

What’s next?

I am now over 2 years into my healing journey. I have endured a lot; had both setbacks and triumphs. I am still going and still persevering. I’ve been able to find the right specialists and see them regularly. I’ve had neurosensory and balance tests, MRI’s, frequent sessions with my vestibular rehabilitation physio and importantly I have been prescribed correct medications. I’ve had to test my brain and body more than I would have liked in the initial phases of treatment. I’ve put my brain in positions even my neurologist advised against but helped prepare me for. 

At the end of the day, you are the only one that can get yourself through this and give it your all. If you make that choice, you won’t regret it. I know a lot of people are misdiagnosed and don’t have access to what I have had available to me. So I want to help you and share my knowledge. I’ve learnt, re-learnt and started healing a lot. I hope to share at least one blog post a week with my thoughts and what has helped me. If you’d like to keep reading and learning with me, subscribe to my blog and I will send a weekly note with upcoming posts. I’ll also share information on my social pages so feel free to follow along there too. 

Lots of strength and thanks from me,

Leora

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4 thoughts on “Let’s Talk Vestibular Disorder

  1. Leora you are an amazing person – thanks for sharing your journey. Wishing you strength and a speedy recovery. Looking forward to seeing your radiant smile and hearing your infectious laugh again soon.
    Sending hugs
    Michael

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  2. Leora, you are such an inspiration!! Thank you for writing and sharing. You certainly taught me (Batya) a lot, and also give us moment to pause and be grateful when our balance and bodies work. What an ordeal you have been through! We pray your healing journey continues smoothly and swiftly to give you the respite and joy you deserve. We love you and will always be on your team!
    Love Gids, Bat, and fam

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  3. Thank you for sharing what you have been through Leora, it extremely courageous of you. Wishing you a refua shelayma, your fortitude and strength through this incredibly difficult challenge are so inspiring . May your your year to come be filled with health and happiness, you so deserve!

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  4. Leora you are an amazing young lady to e able to share your story and give hope to others. May you continue to go for strength to strength. Love Gwen

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