An Adventure in Misdiagnosis, for Dysautonomia Awareness Month

An Adventure in Misdiagnosis, for Dysautonomia Awareness Month

I've recently learned that October is Dysautonomia Awareness Month, which I found utterly stunning. I thought dysautonomia was a rare disorder, incredibly rare. I was spectacularly wrong. However, it is often misdiagnosed. It takes an average of six years to diagnose dysautonomia. It took five years to diagnose mine.

When I was eighteen, I started hallucinating smells. My family has a history of schizophrenia, and I knew schizophrenia tends to manifest when at about the age of eighteen, so I freaked out. Schizophrenia, while an entirely treatable and liveable condition, accounted for several suicides that ravaged my family tree. Worried and hoping to prove to myself that I had no more than garden-variety depression to worry about, I looked up the number for a psychiatrist.

She listened to me for a few minutes while I tried to explain that I knew there wasn't fresh cut grass in my bedroom, or cigarettes in my bedroom, or clay in my closet. The sight of the University Law Quad as I approached on my way home from school filled my mouth with the taste of iron, as though I was sucking on pennies. I knew I wasn't sucking on pennies. I knew my bedroom wasn't filled with smoke. But I smelled it. I tasted it. Always in the same places.

The psychiatrist interrupted me.

"Do you get headaches?"

"Yes," I said. "I get migraines."

"Okay, so you don't have schizophrenia. Schizophrenics hallucinate voices, not smells. Hallucinating smells is a symptom of a brain tumor. Between that and the headaches, I'd say you need a doctor, not a therapist." Then she wished me luck and hung up.

I asked my mother to help me schedule a CAT scan, and an appointment with a neurologist. Over the next few weeks I made some very poor life choices, in the manner of eighteen-year-olds who are convinced that just when their lives seemed to be working out for them, it turned out they were at death's door. My tailspin involved nearly being arrested for public nudity and breaking up an acquaintance's relationship.

When the dust settled and the CAT scan was read, it turned out I didn't have a brain tumor. I had migraines, familial migraines at that, and my doctor diagnosed me with synesthesia- a condition where the brain sometimes assigns sensory input to unrelated sensory output. This most often manifests for people who see the color of sound, but for me it meant tasting and smelling shapes and colors.

A year later, my migraines intensified. At the same time I began having tachycardic episodes and instances of cardiac arhythmia. These gave me intense vertigo. I went to the doctor, and he solemly told me he believed I had a brain tumor.

"I went through this last year," I told him. "I don't have a brain tumor."

"They can grow very quickly," he said. "They might not have seen something on a scan last year, but that didn't mean there wasn't a microtumor, or that it's grown and is getting worse."

I again embarked on a whirlwind tour of making extremely poor choices, but this time tempered with a little more doubt. And again, my scans were clean.

The next year, I started having bouts of blindness. Whole swathes of my vision would just... disappear. I went to my optometrist, who assured me my eyes were fine.

"But it could be diabetes," he said. "You should get your blood sugar checked."

And so I did. And my new doctor looked at all the pieces of my medical picture- migraines, hallucinations of smells and tastes, vertigo... and he told me I probably had a brain tumor. This time there was no series of rash decisions. And when my CAT scans came back clean, the doctor told me I might have "painless ocular migraines" that caused the temporary blindness, and that was that.

When my tachycardia increased a few years later, an ER doctor warned me I might have a brain tumor. With my boyfriend sitting next to me, a look of anxiety on his face, I laughed.

That time, I was referred to an electrophysiologist, and after months of tests, he diagnosed me with "idiopathic dysautonomia."

What little research I could find at the time said that dysautonomia could be terminal, that it was often familial, and that it was related to an array of genetic disorders I don't have.

Now I know a lot more. I know that if I gain too much weight, I begin to experience nerve pain all over my body that I can't treat. I know that I suffer bouts of tachycardia and vertigo and there's nothing I can really do to prevent them. I know it might account for my childhood insomnia. I know that as I get older and my fatigue becomes worse and worse, that might be the dysautonomia, too.

And in the last two weeks, during my very first Dysautonomia Awareness Month, I have learned more than in the twelve years I've known my diagnosis.

If there are morals to be had in my story, I hope they are

  1. Not to act like an idiot when you're confronted with a POTENTIALLY terrifying prospect. No sense panicking until you know for a fact there's something worth panicking about.
  2. Be your own health advocate. No two humans are the same, and the way we manifest our illnesses, whatever they may be, are different. If you don't fit a mold, say so. Don't let your medical providers default to the easiest answer.
  3. Always keep learning! The information available ten years ago is not the same that's available today-- about pretty much everything. Just because you think you know about a subject, don't let it stop you from continuing to learn.

Happy Dysautonomia Awareness Month to you, lovely readers! And many happy returns!



Read more about my family's history of brain cancer misdiagnoses here: Never Question Your Gut Feelings

Read my most recent post here: My Worst Roommate

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Filed under: Humor, Illness, Life

Tags: Illness, Prompts, Stories

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