“Teacher, you’re walking like a tipsy woman. Why are you swaying?”

“Are you a grandma? Why do you climb the stairs like that?” (Then, copies my posture).

“What’s wrong? Are you okay?” (After jerking and accidentally pushing my desk). 

Over the years, I’ve endured these embarrassing comments and questions so much that I usually brush them off with a shaky smile or fake giggle. Going through the rabbit hole of these conversations- telling them about my balance issues, unsteady stance or constant lightheadedness just wasn’t worth it. 

But nothing could beat the humiliation I felt during a major flare-up at work with my undiagnosed chronic illness. I was a teacher at the time. The students, their parents, my coworkers, the admin staff, and the school owner were all present. It’s been 10 years but I still cringe while writing this.

Let me tell you what happened.

My Most Embarrassing Flare-Up 

The first graders were dancing and everyone was cheering them on. They were adorable. I was gushing over these cuties when I saw the stage sway. “Uh-oh,” I thought, “My vertigo is about to come on”. I put my head on my co-worker’s shoulder, closed my eyes and let her know what was going on.

Undiagnosed Chronic Illness vertigo symptoms

My coworker held my hand and let me rest. My mouth went dry, my head became numb, and I felt beads of cold sweat on my forehead. Then, I rocked and swayed so violently that she couldn’t hold me still. She thought I was having a seizure and in a panic, shouted for help.

I saw the floor tilting upward, downward and sideways fast, with no sign of stopping anytime soon. Hoping to stop the feeling, I gripped my chair and anything else I could get my hands on.

It felt like forever and I didn’t know how long my body could take it. I let go and waited to pass out until a male teacher grabbed me and carried me to the school clinic.

The Scariest Question- Will this ever go away?

My very first episode occurred at home in 2008. Vertigo or dizziness is a possible symptom of many illnesses, so getting answers would take time and a lot of tests. I underwent a battery of tests but all turned out negative. 

I can’t even remember how many doctors I’ve seen.

Some doctors suggested Benign Paroxysmal Positional Vertigo (BPPV) as the cause. Others leaned toward Meniere’s disease. Some couldn’t come up with a conclusion and wanted to explore further testing.

No test or doctor could confirm my diagnosis. I tried different medications and rehabilitative treatments but the vertigo attacks wouldn’t let up. Finally, I asked one doctor the question I had been asking in my mind but too scared to say aloud.

“Will this ever go away?”

With a straight face, she said, “Maybe. Maybe not. In some cases, the episodes stop. But other patients get them for life.”

My stomach dropped. I swallowed the lump in my throat. I went home with my head spinning, both literally and figuratively. After that heartbreaking meeting, I took a break from my hospital trips, hoping to regroup as soon as possible.

The Start of My Wellness Journey

Although most of my episodes were random and unpredictable, I did notice some patterns.  Every time I discovered a trigger, I took mental notes and devised simple plans to minimize or avoid them entirely.

Slowly but surely, the severity and frequency of the flare-ups subsided.

Undiagnosed Chronic Illness trying to find a diagnosis

In 2016, I finally accepted that I may not get a diagnosis. If one day I get an answer, that would be awesome! If not, it’s okay, too. I let go of the desire to name my illness. Instead, I sought ways to manage my symptoms and thrive.

After that humiliating episode at school, I reflected on what caused it. A few days before the flare-up, our students went to an amusement park.

I tried a couple of kiddie rides. They were slow and easy so I thought they wouldn’t do any harm. I felt mild lightheadedness while riding but it went away fast. Other than that, I had fun.

But after that flare-up in school, no more amusement park rides for me.

Here’s a quick list of major triggers and steps to prevent them:

Activities

These include amusement park rides, zip lining and anything that involves sudden movements. I also stay away from activities that involve lowering my head below my shoulders.

How to avoid:

Simply avoid these activities and movements.

Constipation

It’s the pushing hard that triggers my vertigo. These episodes were bad – stomach cramps, exhaustion from pushing, and the fear of passing out and hitting my head.

How to avoid:

  • Stop eating red meat.
  • Eat vegetables in almost every meal.
  • Drink at least a glass of green smoothies daily.

Lack of sleep

For me, a good night’s sleep is 7-8 hours.

How to avoid:

  • Keep a bedtime routine.
  • Sleep at 9 or 9:30 every night.
  • Green smoothies help too.

Weather

I don’t know the exact temperature my body can tolerate. My body decides if it’s too cold or too hot and both are not good for me.

How to avoid:

  • Wear proper clothing – cool, soft and loose when it’s hot; thick clothing and layers when it’s cold.
  • Stay indoors during extreme temperatures.
  • Hydrate.

Persistent back and neck pain

With the onset of my vertigo, I found back and neck pain to be a major problem.

How to avoid:

  • Stretch.
  • Use an Epsom salt soak or transdermal magnesium oil.
  • Try out chiropractic sessions (I had 12 in 2017 and they changed my life).

Food and beverage

Eating right has been super helpful for managing my symptoms.

How to avoid: 

  • Stay away from red meat, fast food, soda and foods high in sodium.
  • Cut out alcohol and soda from your diet. 

What’s Next

Undiagnosed Chronic Illness next steps

When was your last flare-up? List down the factors that you think triggered it. What did you do a few days or hours after it happened? Did you eat or drink something unusual? Did you have a long day at work? An emotional argument with someone, perhaps? What were you wearing or what was the weather like?

If you’ve noticed some triggers or patterns in the past, jot them down, too.

From here on out, jot down your triggers after every flare-up.

Share this trigger tracker with your doctor. The triggers may not be accurate but they can give you and your doctor some clues and help you connect the dots.

Do you have a story about chronic pain you’d like to share?

Share your experience in the comments or email us at info@painresource.com.

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1 COMMENT

  1. Hello Mary, thank you for your post. My chronic knee pain rendered me ashamed and hopeless. As per the pain triggers you mentioned in your article, I experienced mine when standing up over and over. A friend of mine recommended me a way of reducing the pain in my knees, and wanted to share it here. http://bit.ly/2XgLxGA (I make no money out this) Dana.

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