Since I can remember, Halloween has always been something I look forward to each year. I love dressing up, the decorations, haunted houses, and scary movies.  And while I patiently wait for October 31st each year, it now has a new significance to me.

You see, two years ago on Halloween night, an evening at home watching a scary movie with my husband, turned into a horror well beyond the two-hour rental.  What felt like a stroke mixed with a panic attack would soon reveal itself as a condition called Vestibular Migraines and Vestibular Neuritis.

A sensation came over me where I felt as if I was sinking into my couch as the room started to spin. My heart began to race, my face became numb, and I lost all control of my balance. Like any sane person, I thought this was the end, I must be having a stroke. It wasn’t till I took a moment to breathe and use my rationale to tell myself that I’m a healthy 27-year-old, it had to be something else.

A few weeks went by where I felt as if I had been drinking wine to the point where I couldn’t drive. I was helpless. After several months of appointments with several different doctors, I was led to believe I had a Sinus Infection, Benign Paroxysmal Positional Vertigo (BBPV), Superior Semicircular Canal Dehiscence (SSCD), and Multiple Sclerosis – THREE times. (This is why it’s important for doctors to be aware of vestibular disorders.) I underwent two CT scans, an MRI, and a full-fledged ear examination – hearing test, vision test, sound check, the works.

When those tests came back negative, my ENT introduced me to a condition they believed I had called vestibular migraines. However, while they were great, they didn’t know much about my condition, so I sought out one of the few vestibular neurologists that treats vestibular disorders. Luckily, one happened to be in the Dallas-Fort Worth area – Dr. Shin Beh at UTSW. It took me 6 months to get in with the right doctor, but once I saw Dr. Beh my life would change forever.

FINDING A DIRECTION

Dr. Beh instantly took a look at my MRI and records and noticed signs of chronic migraines. He also discovered in my MRI that my skull was very thin near both of my ears, so he sent me to one of his colleagues Dr. Isaacson who specializes in Otolaryngology – Head & Neck Surgery.

After several tests and meeting with Dr. Isaacson, I would learn that my thinning skull near my ears (which turns out to be a birth defect) could cause fluid to put pressure on my nerves. I also would learn that I had come down with a condition called Vestibular Neuritis and it was likely that the virus had permanently damaged my vestibular nerve. So, to sum it up, the doctors told me that I had the perfect storm of events happen to me with my birth defect, vestibular migraines, and vestibular neuritis, on top of being EXTREMELY stressed out with work.

To be completely honest, I left the doctors that day and bawled my eyes out. Yes, I was relieved to know that I finally had a diagnosis from some of the best doctors in the country, but it was confirmation that the dizzy state I had been in was now my life.

I will never forget when I asked Dr. Beh, “So when can I expect this to go away?” and he answered, “I can’t give you that answer, we will try to make you feel as normal as possible, but this is typically a chronic condition.”

To hear that I was stuck with this condition stabbed me like a thousand knives in the gut. I remember thinking, “why me?” And “what did I do to deserve this?”  Frankly, I just felt sorry for myself that day. Okay, maybe for a few days. But you know what, you can only do that for so long.

CONQUERING MY DIZZINESS

It’s been two years now. And in two years, I’ve learned more about myself than the 27 years before my diagnosis. You see, I learned that while you can get completely knocked on the ground, it’s up to you to choose how you are going to live your life. Continue to feel sorry for yourself or get back up and move forward.

I left the doctor’s office in a state of emotional turmoil, but after a few days realized that I could work hard and be diligent with my doctor’s treatment plan, continue to research other remedies and just move on with my life. It’s so easy to want to lay around on your bed crying because you’re dizzy, but life will pass you by. It’s up to you to determine what kind of life you want to live.

Yes, my vestibular disorder forced me to quit my corporate job because of my symptoms, but that was the best thing that could have happened to me. Today, I have started my own freelance business and have new projects and clients flooding my inbox. The best part? I can set my own schedule, walk away from my computer to lay down when needed and I’m doing work that I enjoy.

Sure, it might be more difficult to exercise or do activities that I love because I’m dizzy, but you know what, when I complete a hike, go to a haunted house, practice yoga, or even just go to a bar with friends, I feel invincible. I am absolutely thankful that I am at a place now where I can still have fun and live my life as I did prior to this diagnosis. I’m more grateful now than I was prior to all of this.

In two years, I have learned that I am resilient. Life can throw some pretty rough curveballs, but I can take them. Today, I typically feel 85% like myself. Of course, the dizziness is always hanging out around the corner, but my body and my brain have learned to adjust and so has my attitude.

October 31^st will continue to be my one of my favorite holidays, but it has now also become a reminder that I’m capable of anything and no matter how challenging this disease can be, I will continue to conquer my dizziness.

To those who are just experiencing vestibular symptoms for the first time, know that 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.” And who knows, in two years this could be you reflecting back on your initial diagnosis and feeling proud of yourself for how far you have come.

Happy Halloween and cheers to two years later on my road to defeating my dizziness!

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