Pseudotumor Cerebri: The Invisible Illness that Almost Made Me Go Blind

Today’s post comes from Victoria Tokarz ( Victoria is a PhD candidate in the Department of Physiology at the University of Toronto. She is also the current Financial Director of the OC-SNP National Executive

“You’re going to go blind,” explained the on-call neurologist in the dimly lit emergency room at St. Michael’s Hospital.  I heard exactly what he said, but I asked him to repeat it anyways. Surely, I couldn’t have heard him correctly; he had to be wrong. Maybe, I thought, the doctor confused me with another patient. He told me again, more slowly this time, that he was diagnosing me with a neurological condition called “idiopathic intracranial hypertension” (also known as pseudotumor cerebri) that, if untreated, could cause blindness. My mind predictably raced from: “how could this happen to me?” to “But, I’m only 24!” and finally arrived at “I don’t have time for this right now.”

I was 24 years old and in the second year of my PhD program. I looked completely healthy. I was working in the lab everyday, attending classes at the University of Toronto and otherwise living a pretty normal life.  In fact, I visited the emergency room in between the experiments that I was running for my PhD research. I explained to my supervisor that it was “probably nothing” and that I’d be back in a few hours for our afternoon meeting. I didn’t return for 12 days.

The doctor explained that I would be immediately admitted to the hospital where I would undergo a battery of tests to confirm the diagnosis. I came to the emergency room straight from the laboratory carrying only my purse. Its contents (a laptop, an e-Reader and my wallet) were largely unsuitable for my unexpected overnight stay. As I sat there alone in the waiting room impatiently waiting for a bed to become available for me, it struck me how wildly unprepared I was for what was about to happen. I didn’t even bring a phone charger (and nobody in my generation goes anywhere overnight without one). At that exact moment, sitting in an uncomfortable vinyl chair, I actually laughed out loud. I wasn’t laughing because it was funny, I was laughing because I was scared. When I left my house that morning, I had no idea that I wouldn’t sleep in my own bed for almost a week.

Alone with my thoughts, I was suddenly overcome by gratitude. I would not have sought out medical treatment if it were not for my concerned lab mate Rafaela. A few months earlier while we were eating lunch, I told her that I had been experiencing strange symptoms. Her serious mood starkly contrasted the casual way I told her that I had been hearing the sound of my own pulse in my left ear for the last 2 months. When I was sitting or laying down, the whooshing, pulsating sound in my ear was slow and rhythmic. When I climbed a flight of stairs or ran for the bus, the beating in my ear quickened as my heart rate increased. It felt like I was listening to a stethoscope all the time. It was strange and honestly downright annoying, so I ignored it. Rafaela, blatantly horrified at my negligence, urged me to seek medical attention immediately.

Prompted by Rafaela’s urging, I started what would become a winding journey through the Canadian healthcare system, where over a period of 6 months, I saw 5 doctors: 3 general practitioners and 2 ear nose and throat (ENT) specialists. I was diagnosed with a different (and ultimately incorrect) condition by each doctor I visited. My favourite of these diagnoses was chosen by the second ENT. She told me that the whooshing sound in my ear was officially called “pulsatile tinnitus” and the sound was actually blood flowing through my carotid artery. She explained that my pulsatile tinnitus was caused by fluid build-up in my ear canal. I naively and excitedly thought, “All she has to do is drain the fluid and I’ll never have to hear this annoying sound ever again!”.  When I asked her if this was possible, she awkwardly explained to me that there actually wasn’t any fluid in my ear right now, but she suspected that the fluid was probably there before when it caused the onset of my symptoms. This didn’t really make any sense to me – if there wasn’t any fluid in my ear right now, why am I still hearing my blood flow? She nonchalantly dismissed my questions, saying that the best course of action was to “wait it out because it will just go away” and (in a futile attempt to quell my anxieties) she told me not to worry because this “happens all the time”. I left her office feeling like I had an answer, but I was extremely dissatisfied that there was nothing I could do but wait for my symptoms to disappear. I was growing tired of going from appointment to appointment to see doctor after doctor, so I decided to follow her advice and “just wait” for the symptoms to go away.

3 months after that, and about 6 months after the symptoms first started, the stethoscope in my ear was still broadcasting my blood flow – whoosh, whoosh, whoosh. While I was watching tv – whoosh. While I was showering – whoosh, whoosh. While I was walking to the bus stop – whoosh, whoosh, whoosh. The doctor didn’t tell me how long I should wait, so I kept on waiting. Around this time, I decided that I should get a new pair of glasses. I wanted to refresh my appearance and I resolved to splurge on a fancy pair, so I went to my optometrist and got an eye exam. I didn’t know it then, but this routine eye exam in LensCrafters would change my life forever.

As part of the routine exam, the optometrist tilted my head back and gently applied dilating eye drops to both of my eyes.  Twenty minutes later, she would be able to look at my optic nerve (which attaches behind the eye and is easily seen through a dilated pupil). She looked at my left eye, and then at my right eye. She looked again at my left eye. She paused, and I thought she looked perplexed, but I quickly dismissed my own paranoia and resolved to let her do her job without interruption. She looked at my right eye again. Then, she asked me if I had been experiencing any problems with my vision. Alarmed, I quickly told her that my vision was normal, but my nervousness elicited a long, rambling account that included mentioning the pulsatile tinnitus that I had been hearing. As I was rambling, she was writing notes on my patient chart, but she abruptly looked up at me as I said the words “pulsatile tinnitus”. I now know that she was having an “ah, ha!” moment. I didn’t know it yet, but what she saw with her ophthalmoscope (the tool she used to look through my dilated pupil to see the back of my eyeball) was a build-up of cerebrospinal fluid that was pressing on my optic nerve. She probed me with a few more questions before pleading with me to visit an emergency room to get an MRI scan of my brain. She gave me a piece of paper to give to the triage nurses which said that she suspected I was suffering from “pseudotumor cerebri”, also known as idiopathic intracranial hypertension (IIH).

She didn’t know it then, but she was right. Like the Neurologist, she correctly diagnosed the symptoms that an MRI scan, a lumbar puncture and visual testing would later conclusively confirm that I had IIH. During the 5 days I spent in the hospital submitting to these diagnostic tests, I had a lot of spare time that I (like any PhD student would) spent researching my diagnosis. I was trained in biomedical sciences, but I had never heard of this condition before. Sitting in my hospital bed next to my roommate who incessantly yelped in pain from her recent hip surgery, my laptop and I delved into the results of my “what is idiopathic intracranial hypertension” Google search.


Idiopathic intracranial hypertension (IIH) is a neurological disorder that is caused by an increase in the pressure of the fluid that surrounds your brain. This fluid, called cerebrospinal fluid, is incredibly important for your brain. It cushions the brain from injury when you fall or hit your head, it delivers nutrients to your brain tissues and it takes away metabolic waste products. Inside my head, the pressure of this fluid was 3 times higher than it should be (a value that frankly shocked the resident doctor who performed the lumbar puncture to measure it). The most common symptom of the disorder is headache. I had been experiencing headaches for over 2 years, but (like the pulsatile tinnitus) I ignored them. I mean, I was a PhD student who routinely overworked and under slept, and having a headache was not at all uncommon for the kind of lifestyle I was living. If untreated, elevated intracranial pressure can compress brain structures and most notably the optic nerve, whereby compression causes blindness.

IIH is an idiopathic condition, which means that it has no known cause. It can (and did) happen randomly. What we do know about IIH is that it disproportionately affects people with obesity (93% of people with IIH also have obesity), and more specifically – women with obesity who are of childbearing age. Check – I am a woman. Check – I am of child-bearing age. Check – I live with obesity. IIH is a rare disease, affecting only 1 in 100,000 people, but somehow, I was lucky enough to get it. I want to put this number into perspective. The Rogers Centre, home of the Toronto Blue Jays, holds about 50,000 people. Statistically, you would have to fill every single seat in that stadium two times before you would find one single person with IIH – and since I love the Blue Jays and visit the stadium often, that person you’d find with IIH would probably be me. The fact that IIH is so rare partly explains why 5 highly trained physicians misdiagnosed me. Doctors are trained to think ‘horses’ when they hear hoofbeats (not zebras) and IIH is definitely a zebra.  However, diagnoses of IIH are on the rise and our clinicians and scientists are working hard to decipher its enigmatic pathophysiology: current research is attempting to understand how and why it occurs in order to develop the best treatment approaches.

On my last day in the hospital, the neurologist educated me about my prognosis. I sat on the edge of my bed, enduring excruciating pain in my lower back from the site where he inserted the lumbar puncture needle, and listened to him tell me what I had already Googled a few days before.  The treatment was as follows: a medication to reduce CSF production (less fluid means less pressure on my brain) and weight loss. The weight of those words immediately bore down on me. This is the conversation I was dreading. How many times had I sat in a doctor’s office and been coldly instructed that my weight was “unhealthy” by a dejected physician masquerading to care about my health without even bothering to ask how I was feeling? How many times had I been told that my weight was the source of all of my problems? Sore knee? It hurts because you’re obese. Stomach ache? Probably because you’re overweight. Runny nose? Somehow also because I was in a bigger body. This wasn’t my first time at the rodeo; every fibre in my being was prepared to armour up and reject this instruction. I was standing at the foot of the proverbial battle I had fought so many times before. I was nearly ready to fight again, but I didn’t.


For the first time, my doctor spoke to me in a way that led with compassion first, and facts second. The facts of my disease were available online (and I had read them), but the humanity that he offered me in that moment was not just a Google search away. He spoke to me in a way that was so genuine it was palpable; he explained that he really believed, based on all the current available research, that I had a genuine shot at beating this brain disease if I tried to change my lifestyle. I had read the research too, and I knew he was right. I left the hospital that day with 3 things: my sick brain, medication, and a burning motivation deep inside my heart to show IIH that it chose the wrong person.

It has been two years since I sat on that hospital bed, and a lot has changed since then.  From that day forward, I resolved to give my body everything it deserved all along: nutritious foods, physical activity and adequate rest. I stepped into the gym for the first time just 3 days after my lumbar puncture (I can still remember feeling a dull ache in my back while I posed to have my picture taken for photo ID). At first, being in the gym was excruciating: exercise increased my heart rate, which increased both the volume and the frequency of the whooshing sound in my ear. Since then, the gym has become a staple of my daily routine and honestly, a welcome oasis to which I turn when I need to escape the stress of my studies. I participated in movements that I enjoyed and I stepped out of my comfort zone often: I spontaneously enrolled in new classes that I’d never done before and challenged my body to move in ways I didn’t know it could. I was the girl who skipped every single “run day” in gym class, but now I run more than 10km per week every week.

I started noticing dramatic changes. Some of those changes were expected, like the way my favourite jeans started to fit more and more loosely. But the unexpected changes turned out to be the most important: I suddenly found myself with more energy, better able to cope with challenges and I felt significantly happier (about everything). It was like dropping a pebble into a pond – the small, consistent lifestyle changes I made had reverberating effects on so many other areas of my life. The biggest change of all was actually that something disappeared: the whooshing in my ear! I woke up one morning, and it was just gone. The unwelcome passenger that narrated my heart rate for over a year swiftly exited my life as abruptly as it entered. I couldn’t believe it. I was so excited to share this with my Neuro-ophthalmologist (the outpatient specialist who managed my care after I was discharged from the hospital) that I spoke too fast and jumbled my words when I tried to tell her. I stared at the blinding light on the ceiling while she applied the all too familiar dilating eye drops to my eyes. She looked at my optic nerve and told me that, like the pulsatile tinnitus, the build-up of cerebrospinal fluid behind my eyes was gone. On that day, we jointly decided to gradually (but completely) wean me off of the medication I was taking (the one that reduced cerebrospinal fluid production to help decrease the high intracranial pressure).

Two weeks ago, I walked out of her office for the last time. Before leaving, I shook the doctor’s hand while she told me (in the politest way, I promise) that she hoped she’d never see me in her office ever again. She told me with a beaming smile how proud she was of me for everything I had done to battle this disease. Nearly two years to the day that I was admitted into the emergency room and faced the doctor who told me I might never see again, I received a clean bill of health: my eyes were healthy, my brain was healthy, and most importantly – my ears were quiet.

2020-08-31T11:25:31-04:00 February 10th, 2020|Categories: SNP|Tags: , , |
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