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How These Four Words From a Doctor Led to My Rare Diagnosis

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“Do you get headaches?”

Four simple words from my new eye doctor would soon led to a diagnosis I’d been waiting nearly a decade to receive.

When I made the appointment for an eye exam, it was purely because my prescription needed to be updated. I didn’t look at reviews for this particular doctor — I simply went by location, since the office was near my apartment. At no point leading up to my visit did I think that maybe, maybe this doctor would be the one to solve the mystery behind my chronic headaches. In fact, it had been so long since I’d given up on finding an answer that I didn’t even mention my headaches to him until he asked.

Let’s back up: In the winter of 2007, I started suffering from chronic headaches. They came on suddenly, always on the right side of my head, usually right behind my eye. They were severe, but not photosensitive. They were debilitating, but I wasn’t sensitive to sound. Over the course of the next three years, I would be misdiagnosed with temporomandibular joint disorder (TMJ), Lyme disease, and an MSG allergy. Neurologists couldn’t figure out what was wrong with me. The CT and MRI were clear — but I was still suffering.

When the headaches went away on their own, we all scratched our heads in confusion because they’d cleared up on their own. And then they’d come back, go away, come back, and go away and… well, you get the pattern.

At the end of my seemingly routine eye exam, we were looking at the scans of my eye from earlier in the appointment. My eye doctor seemed concerned, and that’s when he asked:

“Do you get headaches?”

I laughed, which is probably not the response he was expecting.

He explained that he could see something pressing against my optic nerve, which concerned him. I could tell he was trying not to say “brain tumor” and failing. I let him off the hook: “I used to think I had a brain tumor, but the neurologist told me I was imagining things.”

I explained my 10-year history of unexplained headaches: Yes, I had headaches all the time. Yes, they were always behind that eye. Yes, I had tinnitus. Yes, I had had every test in the book and everything was clean.

“Intracranial hypertension,” he said. He just suspected it, but wanted me to have an MRI to rule out “anything more serious.”

When I got home from that appointment, Dr. Google told me idiopathic intracranial hypertension used to be known as psuedotumor cerebri.

And suddenly everything made sense.

Idiopathic intracranial hypertension is a buildup of cerebrospinal fluid in the brain, which causes headaches due to the increased pressure in your head. This leads to headaches, dizziness, ringing in the ears, occasional blurred vision, nausea, and vomiting. Symptoms other doctors had turned into a laundry list of diagnoses ultimately calling “stress-induced” were melted away into “idiopathic intracranial hypertension.” It all made sense; the past decade was suddenly 20/20.

The pattern emerged: The headaches went away when I lost weight and came back at the time of year when I tended to gain back some of the pounds. (Usually around the holidays; let’s be honest with each other. Sometimes around finals in college.) No doctor had ever asked about my weight fluctuation or about anything outside of my direct complaints of pain in my head.

The MRI was clean, as we expected, and the treatment plan was a diuretic to try to alleviate the buildup of fluid.

If left untreated, intracranial hypertension can cause permanent vision loss due to the pressure of the fluid on the optic nerve. Years of visits to my doctors and the medical mystery of my relatively rare condition did leave me with some vision loss in my right eye, which is noticeably worse in terms of prescription strength.

I had somehow come full circle. When I first started having the headaches, I went to my eye doctor thinking I just needed a new glasses prescription. I never would’ve guessed that 10 years later, I’d be having that same problem solved by another eye doctor.

Idiopathic intracranial hypertension isn’t a common disorder, and not even my neurologist was able to catch it, even though my symptoms were textbook. None of my Googling back in college was able to find it either — but my insistence that there was something pressing behind my eye, like a brain tumor, should’ve been the first clue for the doctor, rather than being written off as paranoia and hypochondria.

Today, my intracranial hypertension is managed through my diet rather than medication, but it still flares up occasionally. The only difference now is that I’m not scared of it anymore. It’s not a mysterious food allergy or Lyme disease or TMJ. And even though it does a great impression of one, it’s not a brain tumor.

I know what it is, and that gives me power over it that I didn’t have 10 years ago.

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Getty Images photo via NanoStockk

Originally published: January 17, 2018
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