Understanding IIH Symptoms: 10 Things People with IIH Wish You Knew

This post was originally published in September 2022 in honor of IIH Awareness Month. This is an updated version.

There are some things about living with IIH that don’t make it into the medical brochures. And as someone who’s been living with idiopathic intracranial hypertension for years, I can tell you—what people assume about this condition often doesn’t line up with reality.

Some days, I feel like I’m quietly screaming facts into a void. Other days, I’m too exhausted to explain why I had to cancel plans again, or why I haven’t driven in over a year.

So let’s pull back the curtain. Whether you’re trying to understand what a loved one is going through, or you’re navigating this condition yourself and wish people just got it, here are ten things people with IIH often wish they didn’t have to keep explaining.

Some of them may surprise you. Most of them won’t show up on Google’s first page. But every one of them matters.

What You Won’t Find in a Brochure

Doctors might explain the medical mechanics of IIH—something about cerebrospinal fluid pressure, visual field tests, or opening pressure numbers on a lumbar puncture. But they rarely talk about what it feels like to live inside a body with IIH.

They don’t tell you how quickly symptoms can shift from manageable to scary. Or how the world starts to shrink as daily tasks become overwhelming. They don’t mention the social disconnect, the internal tug-of-war over treatment decisions, or the grief that comes with losing pieces of your old life.

But we will.

Because if more people understood what it’s really like, it would be easier to ask for help. To feel seen. To be taken seriously. And to stop carrying the emotional weight of educating others on top of managing the condition itself.

So here’s what we want you to know.

1. It’s Not Just Headaches

If you’ve only ever heard IIH described as “a condition that causes high pressure headaches,” then you’ve only heard part of the story. And not even the most frustrating part.

IIH symptoms go far beyond head pain: constant dizziness, ringing in the ears, blurry vision, nausea, sensitivity to light, crushing fatigue, and pressure that feels like your brain is being squeezed from the inside out.

Reducing it to “just a bad headache” doesn’t just miss the mark—it makes it harder for us to be taken seriously.

2. It Can Shift Without Warning

One moment I feel steady. The next, I’m gripping the counter to stay upright.

IIH isn’t predictable. The pressure spikes, the pain surges, the vision blurs—and it doesn’t always give you time to prepare. One week might be manageable. The next might feel like a total derailment.

That kind of unpredictability changes how you plan your days. It also changes how you ask for help.

3. The Stigma Is Built In

Here’s something you may not know: IIH tends to be misrepresented as a “weight issue.” And while weight is sometimes discussed as a factor, the science is far from settled. Plenty of people with IIH are not overweight. Men and children get it, too.

But the stigma? It sticks.

It affects how we’re treated, how we’re diagnosed, and how much we’re believed. It makes conversations with doctors feel like battles, and it leaves many of us second-guessing whether we’re allowed to ask for care at all.

4. Some of Us Say No to Medication

I’m not on prescription meds for IIH. I tried them. They made me sick in new ways. They didn’t reduce my symptoms. So I made the choice to stop—and that choice is valid.

Not everyone with IIH wants medication. Some try holistic approaches. Some manage symptoms with lifestyle changes. Some need the meds, and some opt out.

What we all have in common is this: we’re doing the best we can with a condition that has no clear path forward.

5. Surgery Isn’t Always an Option

If you’re wondering why your friend with IIH hasn’t had a shunt or stent placed, there could be several reasons: their symptoms might not meet the surgical threshold. Their risk level might be too high. Or maybe they just aren’t comfortable with a procedure that comes with significant complications.

Surgery is not a fix-all. And not having surgery doesn’t make our condition any less real.

6. Pain Scales Don’t Work for Us

When you live with chronic pain, your brain adapts. A “3” becomes your default. A “7” might still look like you’re functioning—but inside, everything is unraveling.

That’s why people with IIH often struggle to explain how bad it really is. We’re measuring our pain on a scale that wasn’t built for us. And sometimes, even we can’t tell when it’s too much—until we crash.

7. We Let Go of Things You Don’t Think Twice About

Driving. Working full-time. Flying. Carrying groceries. Swimming. Loud concerts. Reading for hours. Holding eye contact. The list of things that used to feel normal—but now feel impossible—is long.

For me, the decision to stop driving came after one too many close calls caused by brain fog and sudden spikes of pain. It wasn’t a dramatic moment. It was a quiet one. And it changed everything.

When someone with IIH says they had to stop doing something they once loved, believe them. Don’t try to fix it. Just listen.

8. It Gets Lonely

There’s a kind of loneliness that comes from being surrounded by people who don’t understand why you’re not “better” yet.

IIH is invisible. And invisibility, when combined with unpredictability, leads to isolation. We fall off the radar. People stop inviting us. We stop reaching out.

It’s why online support groups and spoonie communities matter so much. Sometimes, we just need someone who doesn’t require an explanation.

9. “Idiopathic” Doesn’t Mean Minor

Idiopathic means “no known cause.” It doesn’t mean “not serious.” But that nuance gets lost.

Having a diagnosis with no known root cause—and no cure—can feel like living in limbo. You try one thing. Then another. You track symptoms and triggers like it’s your full-time job. You get better, then worse, then better again.

And through it all, you’re just hoping that someone will hear you say, “This is hard,” and believe you.

10. We’re Not Looking for Pity—We’re Asking for Partnership

Most of us don’t want to be the center of attention. We don’t want to explain our condition in every conversation. What we want is support that’s grounded in understanding, not assumptions.

We want people who ask, “How are you really doing today?” and mean it.

We want people who stand with us when we advocate for accessibility, visibility, and better treatment options.

We want allies. Not saviors.

A Small Way to Show Up Today

If you’ve read this far, thank you. You’re already doing the thing that matters most: listening.

But if you want a tangible way to show support—whether for yourself or someone you care about—start with words that uplift instead of fix.

I’ve created a free download called 10 Chronic Illness Affirmations, designed to give comfort and validation when you don’t know what to say. You can use them for yourself, send them to a loved one, or print them as gentle reminders that you’re not alone.

Just fill out the form below to grab your free affirmations—and let’s keep building a world where invisible illness doesn’t mean invisible people.