October will be the two-year anniversary of my life-changing dizzy symptoms that would later reveal itself as a diagnosis of vestibular migraines and vestibular neuritis – permanently damaging my vestibular nerve.

I will never be able to forget how a night home watching a scary movie with my husband turned into a horror well beyond the two-hour rental. Sensations of falling, spinning and melting into my couch convinced me I was having a stroke, but really, I would learn that I had a virus that caused my vestibular nerve to freak out.

I went through six months of testing, ER visits, CT scans, MRIs, three misdiagnoses of Multiple Sclerosis and visited seven doctors before I got a proper diagnosis, which is not a lot considering how many people spend more than 50 months or more in their search for the source of their symptoms. I just happened to be lucky that one of the few Vestibular Neurologists in the country offices in Dallas, TX.

Today, I claim to feel 85-90% normal on most days and that’s because I worked hard to find the best treatments and lifestyle changes to make me feel well-balanced – pun intended. You see, when you’re told your vestibular nerve is damaged and that you will have to learn to live a “new normal,” you’re given two choices: to give up or to move forward. I chose the latter. I refused to let a vestibular diagnosis define my life.

Last year, I stumbled upon VEDA who was promoting “Balance Awareness Week.” I instantly loved that they used a flamingo as their mascot because we truly take “our balance” for granted until it’s been taken away, and here was this flamingo showing off that it can stand on one foot.

Jokes aside, Balance Awareness Week showed me that I was not alone. That millions of people had some sort of vestibular disorder that impacted their lives just like mine. Flash forward to this year and I’m thrilled that I’m an ambassador for VEDA and able to share with you why it’s important to gather as a community and spread the word about vestibular disorders.

Imagine Life Without Balance

Close your eyes and stand on one foot. It’s hard, right? Now imagine having that same disoriented feeling on two feet, and with your eyes open. Or spin in a circle 100 times and immediately walk to the kitchen and cook dinner, could you do it?

A variety of balance disorders affects up to 30–40% of the population before they reach the age of 60. About a quarter of those affected will have to take time off work with a large socioeconomic cost when untreated. Could you imagine?

Before my vestibular diagnosis, I never thought about what it would be like to be dizzy 24/7. In fact, I went on roller coasters, so I COULD feel dizzy. Up until this point in my life, I can’t say I have ever experienced anything scarier than not being able to drive myself to work because I felt like I had guzzled down a bottle of wine.

Sure, the night I came down with my symptoms was terrifying, but what was even more terrifying was waking up to realize that the dizziness hadn’t subsided. There was a period of time where I thought I was losing my mind.

So many people diagnosed with a vestibular disorder don’t have the resources to find a proper diagnosis or help and are left alone feeling this way with no idea why. Imagine your life without balance, but also imagine having no answers to go with it. So how can we help those people?

Educating Family, Friends And Healthcare Providers

It’s amazing to me that more than 69 Million Americans suffer from debilitating symptoms of chronic imbalance association with a vestibular disorder yet I had never heard of this until I got diagnosed. And beyond that, none of my friends, family or co-workers had heard of these disorders.

But unfortunately, vestibular disorders are not common knowledge in the medical community. Doctors report that they are often poorly trained in vestibular and neuro-vestibular conditions. Misdiagnosis rates in the Emergency Department for peripheral vestibular disorders are estimated in the range of 74 to 81%.

So many people are suffering, but because of the complexity of the balance control mechanisms, patients with balance disorders may have to see several doctors before a correct diagnosis is made. I’m an example of just that. As shocking as all of that might be, it’s why it’s so important for patients and those patient’s family and friends to spread awareness.

Who knows, just by sharing an article or spreading awareness, you might reach someone who will be able to change someone’s life.

(You can also sign this petition for a worldwide agreement on the education of medical students, further training for existing specialists and the establishment of medical guidelines regarding vestibular conditions/disorders.)

Community Matters

If you’ve been newly diagnosed or maybe you’re just feeling trapped in your state of dizziness, know that there is a large community of vestibular patients out there who can empathize with your symptoms. They know what you’re going through daily and can be there for a nice venting session, especially when it’s easy for your friend and family to forget you have an invisible illness.

Balance Awareness Week is important for spreading awareness to healthcare providers, government leaders, your family, and friends, but it’s also a campaign that can introduce you to life-long friends.

Spread The Word And Don’t Give Up

So, I ask anyone who reads this to do me a favor, please share this blog post. There are so many people out there who are yet to receive a proper diagnosis and find the treatments available to them that could change their lives. VEDA is such a great tool that can help new patients find doctors, support groups and a plethora of information that will get them on the right track to healing.

And for my fellow vestibular patients, please never give up and keep exploring new treatments, because something will help improve your symptoms – even it’s only by 10%. But celebrate that 10% because eventually you’ll improve by another 10% and so on to where you start feeling like yourself again. 

While it might feel like your life is over, it’s not. And while it might feel like you’re alone, I can promise you that you’re not. There are ways to manage this disorder and eventually you will find yourself living in a “new normal.”

If you’d like to donate to help VEDA continue to reach new patients and healthcare providers, please do so here.

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