I first felt the dull pang in my head on a Wednesday in mid-July 2021. I didn’t think much of it, because like most people, I’m used to having the occasional headache ― usually from PMS or not drinking enough water. I popped an Advil, took a test to rule out COVID, and continued about my day.
That weekend, I still had a headache but, nevertheless, took a pre-planned trip to visit a friend in New York City. I stowed a big bottle of extra-strength Tylenol in my backpack and hopped on my flight. The visit was great, but I found myself taking pain relievers twice a day in order to lessen the ache and feel as much like my usual self as possible. I flew back home to Detroit two days later and pushed on with my week. Still, the pain in my head remained.
My naturally anxious and analytical mind began questioning why this might be happening. Was it stress? I was a recent grad living at home, I was working a job I hated, my house was in disarray from a bad flood the previous month, and the pandemic was still raging on. I wondered if the combined pressures might be enough to push my body over the edge. I convinced myself this was the case ― until I also started feeling dizzy and seeing spots.
I scheduled a doctor’s appointment for the following week. By then, a pulsing whoosh in my ear had begun, and my for-driving-only glasses had become a permanent fixture on my face to combat my spotty vision. I saw a new doctor at my regular clinic, and while she listened to me thoughtfully as I described my ailments, she also noted the history of anxiety and depression on my chart. Taking all of this into account, she told me she suspected I had a tension headache. I was prescribed muscle relaxers and instructed to keep a headache journal to track possible triggers. Then a nurse came in to flush my ears out with water, a particularly nauseating experience that did nothing to alleviate the tinnitus.
Due to my trust in doctors and because my anxiety often did contribute to extreme tension in my upper body, I went home believing that it would all be over soon. Being the proactive overachiever I am, I even booked a myofascial release massage with my grandmother’s favorite masseuse in hopes of relieving every ounce of tension in my body. I remember lying face down on that table in the dark, incense-filled room as I explained to the masseuse that the doctor thought my anxiety was causing my head pain. She was quick to agree, assuring me that the answer to the tension she was attempting to knead out of my body was “relaxing more.” Genius.
I left the appointment feeling sweaty and disheveled but the pounding in my head was still there. I started spending my evenings with an ice pack wrapped around my head.
Things took a sharp turn 2.5 weeks into my unrelenting pain. My mom asked if I wanted to take a trip to the mall, but as soon as we hit the highway, a wave of nausea quickly rose inside of me. I reclined the passenger seat as far back as it could go, closed my eyes and concentrated on my breathing with laser-sharp focus. I feared if I opened my eyes even a sliver, I would throw up all over her car.
The nausea must have been a forewarning of worse things to come. The next morning, I woke up early to run an errand and, during the six-block drive from my house to my destination, realized I couldn’t see. It wasn’t that everything was dark, but more so that I no longer had any depth perception. I could see the houses on either side of the street, but my vision folded in the middle, leaving me unable to see the road. It was like I was trying to read a book, but all of the words were printed in the crease where the binding is centered. I was unable to see where I was going. I discovered the only way I could regain clarity was by closing one eye, so I drove that way for all six blocks there and back. Surprisingly, this was the first time amid all of the symptoms that I felt genuinely scared ― it was now obvious something was very wrong and this wasn’t just simply a stress-related issue.
I went back to the doctor the next day and explained the frightening new development. She couldn’t give me any concrete answers, but she did order an MRI. When I called to make an appointment, they told me the earliest they could get me in was two weeks later at an office an hour away (thank you, American health care system!).
I lay awake that night tortured by the pounding and the whooshing. I was even tempted to endure the chaos of the emergency room if it meant this would all be over. I wept on a telehealth appointment with my therapist that week, frustrated that I had no concrete answers for my unending nightmare and terrified as my mind raced with the worst-case scenarios. Everyone in my life offered well-meaning advice to stay calm and positive, but they couldn’t feel the panic permeating every cell in my body.
One night later that week, I decided to give into my anxiety and do what every mental health professional would probably advise against: Google. I fell into a black hole of frantic symptom-searching and read article after article. I only resurfaced when I discovered a Mayo Clinic page titled “Pseudotumor cerebri (idiopathic intracranial hypertension).” It explained a rare condition in which pressure increases in the head due to the inability to drain cerebrospinal fluid, which mimics the symptoms of a brain tumor.
“I decided to give into my anxiety and do what every mental health professional would probably advise against: Google. I fell into a black hole of frantic symptom searching and read article after article.”
I could check off every symptom listed on the page, and was especially convinced that I’d found a plausible explanation when one of them was “a whooshing sound in your head that pulses with your heartbeat.” There weren’t very many causes offered, but it said that the use of tetracyclines could contribute. I quickly Googled examples of tetracyclines and bingo! There was the name of a medication I had been taking for four months: doxycycline, an antibiotic prescribed by my dermatologist to treat my acne.
I immediately felt a rush of relief and self-assurance. I had been right to feel fear and panic, and giving in to my anxiety had provided me with an answer that no doctor had been able to offer thus far.
I told my parents about my revelation, which they met with hesitation (understandable, as I lack a medical degree and my only evidence was my internet self-diagnosis). However, my dad called an ophthalmologist friend, who agreed that it sounded like a pseudotumor. I also called my dermatologist’s office, which advised me to stop taking the doxycycline just in case. My sister came home from summer camp that weekend, and she was the first person to outwardly meet me at the level of concern that I was feeling inside. She immediately pointed out that when I thought I was looking her in the eye while talking to her, my eyes were actually focused in a completely different direction. Scary.
Coincidentally, I had my yearly eye exam scheduled a few days later. I was quickly passed off from my optometrist to an ophthalmologist, who showed me my retinal imaging full of dark, ominous-looking spots surrounding my optic nerve (which was also hemorrhaging due to the pressure) ― a clear diagnosis of pseudotumor cerebri.
The office called ahead to the emergency room, where I was admitted as an inpatient to receive a CT scan and MRI. I started crying at the suggestion that I might have to receive a spinal tap in order to relieve fluid, but later found out that because I stopped taking doxycycline a few days prior, this could be avoided. Another win for my intuition.
Oddly enough, the night I spent in the hospital was the most restful sleep I’d had in weeks, despite being frequently woken up to get my vitals taken. I felt like Sylvia Plath, the old brag of my heart reassuring myself, “I was right, I was right, I was right.”
I was released from the hospital the next day with orders to follow up with my ophthalmologist and to check in with a neurologist, and I spent the better part of the next year seeing them on a regular basis in order to ensure the fluid fully dispersed. I also went back to my dermatologist to tell her what had happened, but she frankly could not have cared less about what I went through. I haven’t been back there since.
Pseudotumor cerebri can cause permanent vision loss if not treated quickly enough, which terrified me at the time. Luckily, my eyes have gone back to normal for the most part. However, now when I go to the eye doctor for routine check-ups, I notice that the letters they put on the wall collapse in the middle of my vision. I can see the two letters on either side of the center, but the fifth one disappears into the middle, a new blind spot I have as a result of my former condition.
I was lucky that my condition could be traced back to a medication I was taking. This meant that for me, recovery only required stopping the doxycycline and taking a new medicine, diamox, which decreases the rate at which spinal fluid is produced, for six months. However, in most other cases, this condition doesn’t have a clear cause ― or a guarantee that medication or surgery will cure it. I’m not quite sure what it means for me, or whether my condition will resurface in any way in the future, so I’m committed to monitoring it with regular check-ins with my doctors.
I have spent much of my life convinced my anxiety was my downfall, and I worked to minimize and mitigate it as much as possible to maintain any sense of normalcy on my surface. I had never considered that leaning into it would be more helpful than hiding it would ever be. Aside from learning that sometimes anxiety can be an asset ― a useful signal that something is truly wrong and needs to be addressed ― I’ve also discovered that doctors don’t always get it right. They’re susceptible to human error, which means they might be missing something that’s right in front of them. Sometimes it’s up to us to take the situation into our own hands.
Maybe that means speaking up and pushing harder when our doctor offers a solution that feels wrong. Maybe that means getting a second or third or fourth opinion. Or maybe it means doing our own research and seeing if anything fits. Regardless, we know ourselves best and have to do whatever we need to do to get the care we deserve ― especially in a country where doctors are overworked, women are often susceptible to gender discrimination in medical treatment, and too many people don’t have access to the care they need in the first place.
Along with my blind spot, the thumping in my ear remains, an artifact from this journey that will not seem to go away. It’s not constant, but it happens often enough to be disturbing. I’ve noticed that it tends to be aligned with my anxiety, the intensity of the whooshing increasing and decreasing with the ebb and flow of my internal mental health landscape. My medical trauma is forever intertwined with the facet of my mind that ultimately saved me. Ironic, isn’t it?
Alexandra Niforos is the operations associate for HuffPost and BuzzFeed News. When she isn’t assisting in newsroom operations, she is probably over-analyzing an aspect of her life, either in writing or in voice memos to her friends. She is a native Michigander currently based in New York City.