The Diagnosis

The answer to Writing on Weakness and a Hospital StayA FallComforting the Downcast, and This Is Me.

A few weeks ago, as I was throwing a couple of bags into the trunk of my parents’ car, my hat fell over my eyes. I lost the sense of where the trunk door was and slammed my head on it.

Three hours later, my knees gave out when I joined the line at our local fairgrounds for pancakes and sausage at the Maple Syrup Fair. I jolted forward and clutched a vendor’s table to keep myself from falling to the concrete floor.

Last week while feeding the livestock, I walked quickly from the corn wagon to the feed room and caught my foot on the ledge. I crashed onto the concrete. I wasn’t hurt badly, hands just sore, but I couldn’t figure out how to rise. I grasped at feed barrels and sacks before thinking to bring my right foot forward and lean to gain upward momentum.

The rest of the evening, I moved slowly, disoriented.

Some nights, I must say to Jeff, “I need you to tell me what to do.”

At other times, I have to ask out loud, “Where are we?” or “What were we doing, again?”

Sometimes, this brain fog only lasts for a few minutes. Sometimes, it lasts an hour or more. I feel like I lose consciousness, even though I actually don’t.

This feeling of losing consciousness was scariest when painting the bathroom at Jeff’s house, to which I will move after our wedding. I was rolling on ocean blue halfway up the wall.

Suddenly, my arm dropped. The roller flew at an angle toward white tile, painting some of it.

I saw the whole thing happen, yet I had lost control of what I was doing.

I sometimes wear earplugs during the Sunday morning worship service, and screens can easily tire me. Stairs and steep hills exhaust me, even when I am physically in good shape. My arms and legs fall asleep quickly, and waking them up is more painful than it used to be. I often feel a tingling in my left side. My knuckles creak and ache and my grip weakens, so baking becomes difficult. In the evening, all of the heat can suddenly drop out of my body, and I shiver uncontrollably under the covers until I am warm again. If I don’t wear a scarf or pop my collar to block cold winds, intense pressure grips my neck.

All of this is due to vestibular migraine.

Vestibular migraine is a neurological disease where, individually, the body’s systems work well, but they don’t work well together. Connections aren’t made properly. It’s often missed as a diagnosis because it’s a migraine without any headaches. It also can be missed because each individual body system looks fine to individual specialists.

Nothing out of the ordinary featured in my data sets, so the specialists often didn’t know what direction to take. I’d have doctors who would say, “You’re too young to be having these problems” or “I have no idea what’s wrong.” Some gave a guess and said to research that particular issue, and others wondered if it was only psychosomatic.

But there would be that little voice that told me to keep searching for an answer, there is something there, it’s not psychosomatic.

It was an ENT who finally sent us in the right direction, a direction that was different than what I thought and different from what I wanted.

“Try this guy,” she said. “He’s the dizziness specialist.”

One of the cardiologists had mentioned him nearly three weeks before, but his clinic didn’t take my insurance. I never scheduled an appointment.

Then, the ENT suggested him, and it seemed more than coincidence. We stopped by the dizziness and balance office to gather information and see if any tests were needed. I scheduled the appointment, not sure what to do for the office fee. I had a feeling this was the specialist I needed.

The doctor examined me briefly, and then introduced me to vestibular migraine.

 

One cause is head injuries (I’ve had multiple concussions) combined with an ear infection (I had swimmer’s ear as a kid). Another cause is genetics.

Having the diagnosis in hand is a weird mix of relief and frustration and grief.

I feel relieved that there is an answer to what’s going on and no one is going to name a condition after me. I can take medication for it. There are physical therapy treatments that can help me with the dizziness, and behavioral therapy sessions that help me with the anxiety and depression that result from a changed lifestyle and occasionally not being able to see well.

But there’s frustration in thinking of all I went through to get here: a six-day hospital stay, a spinal tap, a blood patch, eight specialist visits, a liver biopsy, a tilt table test, and more before visiting the dizziness specialist who diagnosed me.

I went through all that, and that’s it?

I’d heard the term “migraine” all my life, but I thought it was a type of bad headache. Hearing that I had migraine seemed small and insignificant compared to what I had gone through.

And so far, none of the medicines have worked with my system. The side effects have made things worse, so I can’t take medicine right now. My work has been affected, and I am thankful that I work from home and can make my own schedule. If I could take medicine, I’d have more stamina and less dizziness.

And the grief appears in knowing that I will live with this for the rest of my life. I have to learn to live alongside it and know what my limits are. I have to be careful in my movements, and I am learning how to turn my head without triggering the dizziness and double vision. I also have learned to give myself a pep talk after returning home from work on the farm to climb down from the truck.

“You can do this. It’s only a few steps to the house.”

The list of potential triggers is a mile long. My list includes crowds, loud and sudden noises, and lights in the wrong places at the wrong times. My knees give out and I can collapse onto the floor when something startles me.

Foods can trigger dizziness, but I haven’t yet figured out all of the culprits. I only know that certain types of cheese cause intense symptoms, and I’ve had to bid a sad farewell to chicken alfredo and my favorite mac ‘n’ cheese dishes with bacon and at least three types of cheese. This is the fourth time in the last 12 years I’ve had to reconfigure my diet.

I ask myself, “When will I be able to hike again?”

“Will I be able to play in the band again?”

“Will I ever be able to eat anything good again?”

The #vestibularmigraine community on Twitter has been really helpful, and so has the Migraine World Summit, which concludes today. One of their talks from a previous year on vestibular migraine is below.

 

Through a blog post about a previous summit, I learned that actress Kristen Chenoweth and star football player Terrell Moore both have migraine with vestibular symptoms. Chenoweth would clutch other actors in the middle of a show when an attack came on, and Moore helped his team win the Super Bowl in the midst of one of his attacks.

I also am not the only one who had a hard time finding a diagnosis, either. A recent New York Times article titled, “Why Doctors Dismiss Dizziness,” talked about another vestibular migraine patient with similar experiences.

I could not have gone through all of those experiences without Jeff. He kept fighting for a diagnosis with me. He never let me stop fighting, but he gave me chances to rest and to stop trying to be so tough. For 14 weeks in a row, he drove me to one, two, or three doctor’s appointments or tests per week, nearly all of them an hour-and-a-half one-way trip. We asked questions and researched, seeking a name for what I was going through.

We rested during Thanksgiving week, and after that, we were visiting more doctors until, finally, the day after New Year’s, we had an answer.

So, my life is different than I thought it’d be.

But as he’s said since the beginning, “Things may be different than you thought they’d be, but that doesn’t mean they’re going to be bad.”

2 replies »

  1. Hi Elise,

    Great news you finally have a diagnosis!

    Here’s a fun fact. Fiona the Flamingo is the mascot for the Vestibular Disorder Association. I learned that fact when I was researching Vestibular Disorder. Ever since my stroke in November 2013 my balance has been adversely effected along with spacial reality etc. Loud noises and lights often make symptoms worse. I had a Occupational Therapist who suggested my Vestibule System had been effected by my stroke. Somethings have improved slightly. Somethings you learn to adjust to or live with.

    Vestibule Disorder has it’s own recognition week. In 2019 during that week I put a pink flamingo yard ornament in my primary care physician’s office front yard.

    Take care and all the best,

    Doug Johnstone

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