The Pseudotumor in My Head
I couldn’t recall if I’d always been able to hear my heartbeat throbbing through my ears as I sat on the sofa watching tv one evening. Pulsating echoes similar to a fetal heart through a doppler — a sound I’d become familiar with working in a women’s health practice for years. But it wasn’t a joyous occasion by any stretch, instead I was stuck with inescapable surround sound of my own heart for reasons unknown.
Hell, I couldn’t pinpoint when it started if my life depended on it. Was it a sign of aging? Maybe my former pain doctor was right, everything really does turn to shit in your thirties. It was bad enough that my joints were becoming more musical with each passing day, but this? Perhaps attending too many concerts in my teens/twenties without proper ear protection finally caught up with me. Mom always warned that it’d catch up to me at some point. Even if she was right, there was no way I’d tell her.
Repositioning my head, nothing changed. Lying on my side didn’t help. For a moment I wondered if I’d suffered a mysterious head injury, or in the realm of more logical thinking, maybe I was coming down with a sinus or ear infection — I had chronic ear infections for most of my life anyway.
So I did what any sane person would, and typed “is it normal to hear heartbeat in ear?” into my phone. The results shot back with two words: pulsatile tinnitus. In simplistic terms, pulsatile tinnitus is a “whooshing” or rhythmic sound audible in either one or both ears, following the pulse as a result of blood flow in the surrounding vessels and arteries. It can be annoying, sometimes debilitating, and often frustrating. Nearly every page I opened said that it could indicate multiple health issues varying in severity, and I wasn’t about to go down the rabbit hole of diagnosing myself further because by the end of the evening I’d surely somehow end up with some terminal illness.
I got in to see my primary care doctor soon after, and I felt useless. No knowledge of when it started, what triggered it, and had the worst time trying to explain what it felt like inside. I did, however, realize that once the pulsatile tinnitus was discovered, it had remained present. Somehow she understood, referring me to see an audiologist first, and otolaryngologist after. She wasn’t terribly concerned, at most figuring that maybe I’d suffered some hearing loss.
The audiologist evaluation was littered with questions and assessments, culminating in my sitting in the tiny soundproof room with an extremely low ceiling even for my 5’4” stature. Pressing the red button each time the muffled beeps came through headphones, hoping like hell I’d pass with flying colors. I was curious if those years of concert going actually did screw with me, but as much as I’d hoped for some type of answer to my newfound problem, I feared what it all could mean. Turns out the anxiety was all for naught. With hearing near perfect for my age, the audiologist recommended wearing earplugs in loud settings, like concerts or while mowing the lawn.
Weeks later, I met with the otolaryngologist. An odd man dressed in a business suit and bow tie, he entered with a rapid-fire line of questioning. After what seemed like less than five minutes with me, he said, “You have intracranial hypertension, just lose some weight and it’ll stop. I’ll give you a prescription but you really don’t need to take it. Just lose weight.” Given his nonchalant delivery of this news, I went about my day just as any other. If I didn’t need the medication he prescribed, I wasn’t going to fill it, I’d just stop eating crap food and lose some weight — I’d already lost about ten pounds. If this doctor didn’t think intracranial hypertension was a big deal, then neither would I. Our visit was essentially useless, so I leaned on the internet as my guide.
Benign Idiopathic Intracranial Hypertension (IIH), or Pseudotumor Cerebri, (the body can mimic a brain tumor without one being present), is caused by build up of cerebrospinal fluid in the skull. It’s commonly diagnosed in females of childbearing age, and can cause headaches, migraines, pulsatile tinnitus, blurry vision, vision loss, neck stiffness, fatigue, among other symptoms.
I went about my life just as before since the whooshing in my head had become my new normal. If no one was going to make a big deal out of these things, then neither would I. If I was in imminent danger, surely one of my physicians would’ve told me.
A year and a half later everything changed when I embarked on one of my bi-weekly trips to Trader Joe’s. Pulling into the plaza, I felt “off”. A sense of doom, like I wasn’t totally present in my body. It wasn’t a panic attack — those were easily identifiable. This felt different, somehow worse. My neck went stiff, lightheadedness kicked in, which I chalked up to not eating much earlier in the day. I wasn’t hungry, but forced myself to eat something from a nearby restaurant. Nothing, and yet I was still worried about not being able to go get groceries.
There was an urgent care across the street. Just as I pulled into their parking lot, the right half of my mouth and right arm went numb, subsiding moments later. Soon after, the bottom third of my vision turned black, hearing muffled. I was certain in that moment I’d met my demise. Nausea kicked in as I sat waiting for the physician assistant to come in the room. Once she did, she was confident that I was experiencing a migraine, but ran an EKG which came back unremarkable. Her concern wasn’t with the migraine itself but the presentation, and suggested I get to the closest emergency department for more workup.
Arriving at the ED, they anticipated my arrival, swooping me towards the back quickly. Blood was drawn, urine sampled, and the doctor came in expressing concern of a possible aneurysm. Turns out when I get migraines, they present as aneurysm/stroke-like (pretty sure its the sudden onset, half numb mouth/arm deal that tips them off). I was sent for a CT scan — it, as well as all other diagnostic labs returned normal. As my symptoms began dissipating, I was left with only a sharp, gnawing pain in my head. I was diagnosed as a migraine with aura and referred to a neurologist to call Monday morning.
Apparently the neurologist I was referred to was in high demand, as his first available was three months away. I made the appointment figuring I could hold out until then. I was wrong.
Weeks later, I contacted my primary doctor. The throbbing pulsations in my ears were too much, so she gave me another neurologist to call. I proceeded, all while keeping the other appointment as a fallback. Later I’d be incredibly thankful for that.
The neurologist’s bedside manner was lackluster, barely listening to my answers before spouting off more questions. He did, however, want to check on my optic nerves and get a complete picture of my head. He prescribed a medication for migraines that had terrifying side effects, and ordered an MRI and MRA. While MRI scans produce images of tissues and organs, MRA scans focus on blood vessels. Fortunately for me, they’re done in one appointment in the same machine, which was great because I didn’t realize how claustrophobic I’d feel once my body slid into that teeny tiny space. Again, the tests came back normal. The neurologist said to call if headaches were occurring more frequently, and that was that.
Eventually the headaches multiplied, so I called his office asking what the next step would be. The secretary relayed a message that I needed a lumbar puncture, but the doctor didn’t perform them so it’d be offsite at a third party facility. There was no empathy, no concern for my well being. Not even a hint of compassion in delivering the news that he wanted to have a stranger jab me in the back with a large needle. He would prescribe a medication for the intracranial hypertension but not without that. Since having a lumbar laminectomy several years prior, I was extremely guarded with my back, and this was non-negotiable. Frustrated, I decided to hold out for the originally intended neurologist instead.
In the meantime, I spent time researching online — I mean, when did that ever backfire?
I was terrified by the fact that if left untreated, IIH may cause blindness (with papilledema, which is not a guarantee if you have IIH!). I became hyper focused on it, paranoid that one day I’d wake up to a sea of darkness. Even worse, I became obsessed over why I even had to deal with this in the first place. I always like to know the “why’s”. Why did I get stuck with IIH? Sure, it’s idiopathic, but my god, that is just not good enough. Could it be that I was on tetracycline medications as a kid? A result of my lumbar laminectomy? The fact that I have PCOS or gained 60+ lbs in a matter of a few years? A lingering side effect of hormonal birth control? (All of the aforementioned have possible links to intracranial hypertension). Again, is it because I’m in my thirties? Man, getting older really does suck.
When time finally came, I knew that whatever this new neurologist threw my way, I had to take it. Frequent headaches had become burdensome, the pulsatile tinnitus constant, and anxiety over the optic nerves? Forget it.
Once the doctor entered the room, I knew I was in good hands. Not only did he take time to speak to me without talking down, but he said the one thing keeping me from an official diagnosis and the treatment I so desperately needed was, (yup), a lumbar puncture. Wincing in his direction, he smiled back, reassuring me that he would be doing it, and as an added benefit — I might actually get some relief. This guy appeared to actually give a shit and spent a generous portion of the visit answering all of my questions, no matter how stupid I thought they were. Finally, a physician other than my primary that actually appeared to care.
About a week later, I arrived for the lumbar puncture. The doctor explained each and every move before doing anything. I assumed the standard hunched over position, things were okay. Then he asked me to lay on my side, and when that didn’t produce better results, I had to sit back up. Well, chalk it up to having cerebrospinal fluid being drained while changing positions, or anxiety, or the fact that I shoved a few egg white bites in my mouth minutes before the appointment (hey, no one told me not to eat!), but I vomited fast and hard. My doctor chuckled afterwards, he’d done hundreds of lumbar punctures through the years, yet I was the first to ever throw up during one. Not the lasting impression I was hoping for, but we were done and I never, ever would need to do it again.
My opening pressure was borderline, but given my other symptoms, it was enough to solidify an official IIH diagnosis and open the gate to real medical treatment. With that, I was started on topiramate, a carbonic anhydrase inhibitor commonly used to treat epilepsy and migraines as well as IIH. Shortly after the appointment, I started feeling amazing. In fact, for about a week after, I felt energy that had been absent for years. I believed that topiramate was a miracle, but turns out, it was a short lived side effect of the lumbar puncture. After being on topiramate for a month, I felt like a zombie more days than not and had to stop. I was napping so much I barely had energy to even notice if the other symptoms were alleviated.
Enter acetazolamide, a medication in the same class and often the first line defense in IIH. In the beginning I still felt fatigued, but not as much. Migraines became infrequent or less severe. The pulsatile tinnitus now concentrated on one side (at times, alleviate by neck stretches/repositioning). In time, I began noticing that the silence I couldn’t remember experiencing for so long had returned. Only now, it left me feeling uneasy as I’d wait for the whooshing to reemerge. On the downside, acetazolamide caused me to experience tingling in my fingers, toes and lips in the morning. It also causes carbonated beverages to taste flat (on the upside, less money spent on sparkling water). With its diuretic properties, it got me drinking more water and I began peeing much more frequently.
Sometimes if I change positions too quickly, or turn my head too fast, it takes a moment to catch my bearings. While medication helps brings pressure down, at times, my head feels like an overflowing bowl of jelly. On occasion I fight with word recall or get bogged down with brain fog (unfortunate side effects that makes me terribly self conscious, but my doctor believes will go away if I get to a point of discontinuing the medication, which he remains optimistic). For me, the good has outweighed any of the undesirable effects, allowing me to function as normal as possible.
I’ve lost substantial weight and am at my lowest in over a decade. I stopped hormonal birth control right before noticing the pulsatile tinnitus several years prior. I keep an eye on sodium intake, and adjust my acetazolamide dosage as needed under guidance of my doctor. My optic nerves are examined regularly with both my neurologist and ophthalmologist. Turns out they’re in excellent shape, but at one point they were swollen and that fact alone, scares me.
I’ve come to hate the silence. At home there’s an air purifier running 24/7 which helps filter out not only dust particles, but the white noise in my head. I’m constantly listening to music or the tv serves as background noise. Silence just reminds me realize how infrequently I get to experience it. Hell, I burst into tears minutes into Baby Driver, (and at the end) because even though I don’t have the “hum in the drum” of classic tinnitus like Baby, I relate to wanting that escape from the noise. For me, there is no real silence.
It’s difficult sometimes longing for an escape from my own head. A place that I’ve spent my entire life playing out countless scenarios and traveling to fantastical places. My head is usually a happy place, and IIH at times makes it difficult to navigate. I used to think this would be easier if an actual tumor was at play. At least then there would be a concrete reason and cure. However, that logic is so terribly flawed.
Despite seeing my amazing neurologist on a regular basis over the last two years, I still wonder what could’ve triggered this. I still look up medications I once took, conditions I have or that could develop. It drives me crazy that I will likely never get my “why”. My case is relatively mild, but life altering nonetheless. Some days are more difficult than others. Some days I joke that I can’t differentiate if the fatigue I’m experiencing is from depression, IIH or actual tiredness. Yet each day I do everything in my power not to allow the whoosh to get the best of me.