pink shoes balancing on a wooden log
Migraine Advocacy,  Vertigo,  Vestibular Migraine

A Life Without Balance

Imagine a life without balance….

It isn’t easy even if you try. Perhaps some may get a hint of it after a wild ride after an amusement park, but it’s impossible to try to understand what that’s like for someone to live through everyday. 

Daily Symptoms

You know that scene from The Sandlot where all the kids decide to dip before going on the spinning ride and then everyone starts to hurl? That’s one example that comes to mind when I attempt to describe a vertigo attack.

Or if you’ve ever been on the ride The Haunted Mansion where things appear and disappear, change size, or seem out of place, that visual distortion is a common symptom of vestibular migraine.

It sounds miserable, right? But these are just part of the daily symptoms I experienced with chronic vestibular migraine. 

A woman shielding her eyes
Photosensitivity is just one of many symptoms.

Losing My Balance

Before I was diagnosed with chronic VM, I was the epitome of balance! I would pride myself on being the girl in the yoga class who didn’t fall over in dancers pose. I grew up attending multiple dance classes a week and I would get frustrated if I ever lost my balance off of my pointe shoes. Little did I know that the only reason I was able to do any of this was because of my vestibular system.

Your vestibular system is part of your inner ear and is responsible for your sense of balance and awareness of where you are in space. Can you believe such a small part of your body is so important? I also couldn’t believe how incredibly delicate it is. If tiny little crystals become dislodged and relocated in a different canal, it can literally knock you on the ground so hard that you’re continuously spinning and vomiting until they are put back into place (this is actually called BPPV). 

It’s amazing to me that vestibular disorders even exist. It doesn’t seem fair that one illness can give you vestibular neuritis. Or one little trigger can set off chronic vestibular migraine that you can only go into remission from, but never quite cure. If someone would have just told me then I would have been more careful is what I like to tell myself…but would I have actually even believed them?

The Hard Truth

The truth is that as much as we try to describe our symptoms to others, it’s only those who suffer with us that will ever really understand what a life without balance is like. They know what it’s like to lay on the floor and still feel like you’re falling or spinning. They understand the feeling of walking on flat, solid ground but suddenly it turns into a bouncy house and you stumble over yourself. And they know what it’s like when you feel really stupid because you forget what your own name is in a meeting and can’t seem to recall it quickly. 

This became my new normal for a while – a life without balance. And on some days that I get stressed or don’t manage my symptoms well, it definitely makes it’s appearance. 

I don’t miss the irony that an unbalanced life can literally create an unbalanced life for myself. 

Misunderstood

One of the ways I found my balance again was by finding a wonderful doctor who understood the vestibular system. You see, Vestibular Migraine, has only been recognized as a diagnosis in the last 10 years. There’s very minimal research on it. And if I’m being brutally honest, it’s only recently been taken more seriously by the migraine community.

People with VM often feel misunderstood and left out of the conversation. While very little research is devoted to Migraine Disorders in general, VM doesn’t even have a quarter of the time and effort devoted to it. We’re told that it’s a “rare” condition, but 69 millions Americans have experienced some form of vestibular dysfunction. Vestibular migraine is also the leading cause of spontaneous vertigo episodes. Yet the IHS doesn’t even classify VM as a type of migraine, but instead an “episodic syndrome”.

We Need Change

With fewer than 10 doctors in the US that put in the effort to researching and treating patients with this disorder, I’m sure the numbers reported are even lower than the amount of people actually experiencing VM, or vestibular disorders in general. I hope that in my lifetime this will change. It seems many people have a life without balance.

The good news is I have seen a shift even in the last few years. A number of instagram accounts and blogs have popped up highlighting this illness since I began The Dizzy Cook. I can only imagine what the next 4 years will look like. 

How to Get Involved

But influencers are just one small part of the equation. One of the ways you can start to help is just by talking about this illness more. Make it a part of everyday conversation. Bring it up to every doctor you meet, even if they respond with “oh headaches!”. If you’re not getting the answers you want from your doctor, push to see someone who understands the vestibular system more, like a neurotologist.

Sharing facts and resources from vestibular.org is another great and easy way to spread awareness. You can even get involved with them by volunteering to make phone calls to new members of the organization or handing out fliers in your local senior community. 

Finally, consider signing this petition which demands better doctors and patient care for those with vestibular disorders. And contact your local government  or news stations (Twitter is a great resource) to make sure they know about this illness and how debilitating it can be. 

On this Balance Awareness Week, I hope we spark a little bit of change as we work towards a life with a little more balance.

A Life Without Balance - What it's like to live with a vestibular disorder that affects your entire balance system and how we can implement change for the future. #vestibulardisorder #vestibularmigraine #menieresdisease

I’m Alicia Wolf, owner of The Dizzy Cook, a diet and lifestyle website for anyone with Migraine. After struggling with chronic Vestibular Migraine that was incorrectly diagnosed for months and feeling so alone, I set out to create a space that offered positivity, hope and encouragement to other sufferers. I develop Migraine friendly recipes that follow the Heal Your Headache diet, as well as gluten free options. Although the diet was just a small piece in my treatment plan, it really helped me get back to feeling like my old self and having 100% days again. In an effort to promote awareness for Vestibular Migraine, I am also an Ambassador for the Vestibular Disorder Association and a writer for Migraine Again. I’m currently working on a cookbook that will be published February of 2020.

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