When I was 16, I got dizzy. It didn’t go away. When I went to my doctor after several weeks, he said it was my antidepressant. My psychiatrist concurred and switched me to a different one. The dizziness continued.
My doctor’s next guess was an inner ear infection. This seemed to fit: I had chronic ear infections as a child and had 5 ear surgeries before kindergarten. But two courses of antibiotics did nothing but give me diarrhea.
At this point, my doctor just shrugged. He never used the word psychosomatic, just told me I should talk to my psychiatrist. The implication was clear.
I knew something was wrong, but nobody would listen.
My senior year of high school started, and the dizziness was getting worse. I couldn’t change directions or turn my head quickly. Sometimes I had to hold onto the wall just to walk down the hallway. I went back to my doctor, who shrugged again and put me on a scopolamine patch. It didn’t help.
Then I started passing out. I’d just drop–no lightheadedness or tunnel vision as warning. Back to the doctor. This time he tested my blood pressure and blood sugar. They were both in the low-normal range, but that had always been the case for me. He told me to eat six times a day and drink more water.
Then the seizures started. My doctor’s answer was that it sometimes happens with hypoglycemia. My psychiatrist told my mother that girls with BPD (my diagnosis at the time) often fake illness for attention, an answer my mother loved because it gave her an excuse to punish and berate me for my “manipulative behavior.” No one did an EEG, a brain scan, or any other diagnostic tests. It was all in my head–who can justify the expenses of diagnostic testing for someone who’s clearly just crazy?
Then, in the middle of discussing filibusters in my US Gov class, I passed out, had a seizure, and stopped breathing. The school sent me to the ER of the city’s major research hospital–luckily, my doctor didn’t have privileges at this hospital. They did an EEG and found I was in a postictal state. Once they were sure my breathing was normal, they did an MRI. Then a CT. I knew they knew something was wrong, and I was both relieved and terrified. Two days later, I had an appointment with a neurologist, and a neurosurgeon a week after that.
The diagnosis: an arteriovenous malformation in the left frontal lobe of my brain. An AVM is a mass of veins and arteries grown out of control, and it puts you at an extremely high risk for stroke or aneurysm. Mine was very large. It’s a congenital defect, but it sometimes grows during adolescence. I was lucky, the neurosurgeon told me. Many people don’t have symptoms, so they don’t even know they have the AVM until they stroke out. Mine had started pressing on a nerve, and the resulting dizziness, fainting spells, and seizures were the reason mine was diagnosed.
Lucky. if my mother, my doctor, and my psychiatrist had had their way, I never would’ve been diagnosed. Only, perhaps, postmortem–the neurosurgeon said if an AVM the size of mine ruptured, there was virtually no chance of survival. Lucky me.
I did wind up lucky, though. I had brain surgery. My three-year angiogram (the definitive diagnostic test for AVMs) was clean, and my neurosurgeon told me I had “a perfect brain.” (lol wut) It’s not like a tumor; it doesn’t come back. My brain is safe now.
But I’ve never forgotten what it was like to know something real was wrong with my body, while men in white coats with framed diplomas told me I was making it up. They dismissed me as crazy, but being crazy doesn’t mean you can’t also be physically ill. I have the brain scans to prove it.