Women, You Need to Advocate for Yourself and Your Health
I’m not new to weird medical conditions or chronic illness. When a doctor does a scan on my body and finds something new or weird, it’s not really a shock anymore. However, every weird thing they’ve found has been directly tied to one thing — being a woman. That’s fairly obvious for my polycystic ovaries and my tilted uterus, but it starts to get a little more insidious when I hear that my depression and anxiety are hormonal or that the biggest risk factor for my migraines is “being a woman.”
And now, for six years, I’ve been misdiagnosed as having “just” migraines. Crippling headaches, nausea and vomiting, photosensitivity, and the only relief would be sitting in a dark, quiet room (usually the bathroom) with ice on my head and a very cold bottle of Sprite nearby (I don’t think the Sprite actually helped anything, I just think Sprite is the millennial equivalent of drinking ginger ale when you’re sick).
Within the last year, the migraines started ramping up. More frequent, more painful, more photosensitivity, more nausea. In May of last year, I was hospitalized because of a sudden “worst headache ever” and a 102 fever. They determined I didn’t have meningitis only because I was still sitting up and talking to them, albeit while also throwing up and very high on intense painkillers. My CT came back clear. My bloodwork normal. “You’re a 23-year-old woman,” they said. “That’s about the time migraines start.” They charged me $2000 for that visit and told me to start looking into pain management. I didn’t feel right about it and I didn’t feel better, but they sent me home that night, confused and in pain.
For a while after that, things were okay. I was still having migraines about twice a month, but they weren’t as bad as that night, and they weren’t really stopping me from doing things I enjoyed. I got out of a toxic and abusive relationship. I was still dancing. I started playing the violin again and joined an orchestra. I moved into my dream apartment. I was going on dates. Hell, I started looking at law schools to begin practicing civil rights law. I still had migraines, but I had a life too.
And then all of a sudden, I didn’t. When I had a migraine, usually that icky hangover phase would last a day or so beyond the migraine itself. Gradually, that increased to a week. A full week after a migraine, I’d have intense brain fog and fatigue. I’d be clumsy and dropping things, tripping over my own feet and choking on water. I’d forget things I was told minutes before.
Then, a week became a month, and then that would carry over into the next month, until I had three consecutive months of daily headaches, with regular bouts of nausea, constant photosensitivity, and occasional loss of my peripheral vision. I was having panic attacks and I could no longer walk up the stairs to my apartment without having to rest. I certainly couldn’t dance or play the violin.
“They’re just migraines. You’re a 24-year-old woman. This is normal.”
I felt insane.
I’ve seen 11 different doctors across the state of Illinois in the last year. I was given new painkillers, abortive medicine, anti-seizure medication. I’ve been recommended botox and acupuncture and was told to see a chiropractor. I’ve been sent articles about migraine studies and that stupid piercing that’s supposed to make migraines go away altogether. I watched the weather. I avoided rebound headaches. I was told to drink more coffee. I was told to drink less coffee. Maybe it’s gluten? Maybe it’s your birth control? Maybe it’s just when you’re on your period?
I finally went back to my family doctor from when I was a kid, about a three-hour commute from where I currently live. I told him about the headaches behind my eyes and about the brain fog. I told him about the clumsiness and the panic attacks. I told him about the blind spots and about this vision loss. He told me it sounded like epilepsy or a brain cyst, but it didn’t sound like migraines.
He ordered an MRI and sent me to a neurologist at Northwestern.
I’ve always had secret dreams of becoming a radiologist, so I thought the MRI was the coolest thing in the world. I got my scans back minutes after it was done, and I spent all night looking at them, texting my mom theories about what could be wrong with my brain. Finally I had something concrete!! I had pictures to show doctors!! Here’s my brain, please fix me!
The next morning, the radiologist sent back the report:
Those are a lot of unfamiliar words for a 24-year-old math major working in UX design at a sports company, even if I had seen Grey’s Anatomy 4 times all the way through.
I did go back a week later for clinical correlation, and it is in fact idiopathic intracranial hypertension. Or “pseudotumor cerebri.” Rare brain condition. About 1 in 100,000 people in the general population will get it. Basically, my brain has too much cerebrospinal fluid around it and it’s going the only two places it can — around my optic nerves, flattening my eyes, and it’s also crushing my pituitary gland, resulting in the partially empty sella on my MRI. Called pseudotumor cerebri because it mimics the symptoms of a brain tumor.
“They’re just migraines. You’re a 24-year-old woman. This is normal.”
For years, fluid around my brain has been crushing my eyes and my pituitary gland. I was actively losing my vision, and if I hadn’t started getting treatment when I did, I would have gone blind.
Now I’m on a medication to start reducing the fluid buildup around my brain. The medication is hard on me and my body; I’m tired all the time and I don’t feel much better. I’m losing a lot of electrolytes and potassium from the loss of blood plasma in the cerebrospinal fluid, and it’s hard to keep up with. But, for the first time in months, I went to work for a full day without any blind spots.
Next week, I see a neurologist. After that, an ENT. Depending on how those go, I might also have to see a neuro-ophthalmologist (for my eyes)and an endocrinologist (for my “missing” pituitary gland). I might have to get a lumbar puncture to reduce the pressure around my brain. I might have to get many lumbar punctures. I don’t know.
But I have an answer. I had to bother 20 people about it by the time I got it, but I got an answer. And I’m going to get better.
Women, you know your body better than anyone else ever could. You know what’s hormones. You know what happens on your period. If something doesn’t feel right, you have to keep trying and keep bothering anyone who will listen. Trust yourself.
Women, You Need to Advocate for Yourself and Your Health
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