I went to the optometrist expecting to pick out glasses. Instead, I left wondering if I was going to lose my vision.
I’d just had lunch with my mom and headed to what should have been a routine eye appointment. I was farsighted, had astigmatism, and had never had any reason to think my eyesight was in serious trouble. Then the appointment stretched past two hours, and I could tell from my optometrist’s face that something wasn’t right.
He wanted to run additional tests and warned me some might not be covered by insurance. I shrugged and said, “Sure. You only get one set of eyes.”
I had no idea how true that was about to feel.
When a Routine Eye Exam Finds Something Wrong
My optometrist eventually told me I needed to see a specialist. He was concerned about papilledema, or swelling of the optic nerve, and mentioned a possible neurological condition called idiopathic intracranial hypertension, or IIH.
I was stunned.
I’d been having headaches and dizzy spells, but I’d mostly blamed them on being busy, working long hours, and stress. I hadn’t considered that they could be connected to increased pressure inside my head.
The word “idiopathic” matters because it means the cause is unknown. There wasn’t a simple explanation for why I developed IIH, and there isn’t always one. There are medications and other factors that can be associated with increased intracranial pressure, and several of my healthcare professionals also told me that stress wasn’t helping my situation.
That doesn’t mean stress caused my IIH. It means that, whatever was happening, constantly running myself into the ground wasn’t doing me any favors.
The Symptoms I Had Been Brushing Off
Looking back, I’d gotten very good at explaining things away. A headache was because I was tired. Feeling dizzy was because I was stressed. Being exhausted was because I was working too much.
That had become normal.
I was focused on my career and building the life I thought I wanted, and I wasn’t paying much attention to how I actually felt. I don’t believe I caused IIH by working too much, but the experience definitely changed how seriously I take persistent symptoms.
Headaches and dizziness can have plenty of causes, so I’m not suggesting every headache is something serious. But if something keeps happening or feels unusual, get it checked out.
I’m incredibly grateful that my optometrist did.
What Living With IIH Was Actually Like
Once I was referred to specialists, things moved quickly. I saw a neurologist and an ophthalmologist and went through testing and treatment, including lumbar punctures to measure my cerebrospinal fluid pressure.
I was prescribed Diamox, while Topamax didn’t agree with me. There was some trial and error with medication, along with follow-up appointments and monitoring.
The hardest part was probably the uncertainty. When your vision is potentially at risk, every appointment matters. You become very aware of every headache and every change in how you feel.
Then, in 2021, I got the news I’d been desperately hoping for: I could keep my vision.
I cried. I was relieved, overwhelmed, and incredibly grateful.
What Changed Afterward
A health scare like this has a way of rearranging your priorities.
Before IIH, I spent a lot of time thinking about work, goals, money, and what I needed to accomplish next. Afterward, I started paying more attention to the things I’d been rushing past: walks with my dog, brunch with friends, afternoons at museums, and simply having time to enjoy my life without feeling guilty for not being productive.
I didn’t suddenly become a perfectly balanced person. I still work too much sometimes. I still stress about things that don’t deserve it. But I became much more aware that there will always be another email, another deadline, and another project.
Your health doesn’t always wait.
Take Care of Yourself
I’m not a doctor, and this isn’t medical advice. IIH is complicated, and headaches, dizziness, and other symptoms can have many different causes. If you’re concerned about something, talk to a healthcare professional rather than trying to diagnose yourself online.
But if there’s one thing I’d take away from my experience, it’s this: don’t ignore your body just because you’re busy.
Get your eye exams. Go to the doctor when something feels weird. Follow up when a healthcare professional tells you something needs more attention. Don’t keep pushing through symptoms because you have work to do or because you assume it’s probably nothing.
You only get one body. Take care of the damn thing.
I’m incredibly grateful my optometrist kept looking instead of simply sending me home with a new prescription. That appointment gave me a diagnosis I never wanted, but it also gave me a much sharper appreciation for something I’d always taken for granted.
My eyesight.
I still have a busy life. I still get stressed. I’m still very much myself. But every once in a while, I’ll catch myself looking around at something completely ordinary and think about how easily I could have taken it all for granted.
I don’t anymore.
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