Woman Has Not Gone a Day Without Migraine in Over 4 Years: Inside Her Life with Debilitating Condition (Exclusive)

"I didn't realize that the people next to me weren't dealing with extreme pain all the time," Bernadette Gorczyca tells PEOPLE

<p>Bernadette Gorczyca</p> Bernadette Gorczyca

Bernadette Gorczyca

Bernadette Gorczyca

For "as far back" as she can remember, Bernadette Gorczyca has experienced debilitating migraine headaches — the kind that lead to nausea, require lights to be dimmed and volume to be turned down, and would leave her bedridden for days or even weeks.

The former teacher, who lives in New Jersey, tells PEOPLE that she remembers being a child and "waking up in the middle of the night and telling my parents, 'My stomach hurts so bad.' "

Though she didn't know it at the time, she was living with intractable migraine — a severe headache that can last for more than 72 hours and often doesn't respond to conventional treatments.

"I lived with undiagnosed migraine and untreated migraine pretty much my whole life," says Gorczyca, 37, who has gone viral on TikTok for sharing her story.

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As a child and even a young adult, Gorczyca's doctors "didn't even know what was happening" and misdiagnosed her numerous times — with a sliding hiatal hernia, chronic sinusitis and "stress headaches."

Meanwhile, the migraine attacks had become a part of her daily life. "I was planning my day around it," she says. "I didn't realize that the people next to me weren't dealing with extreme pain all the time."

By the time she was 33, she says, "I was only going one to two days per month without a migraine. I think my longest lasted 17 days. And I only stayed home from work if it was so severe I couldn't move."

At the beginning of the pandemic, Gorczyca got COVID-19.

"It took me a very long time to fight it off. About a month after it passed, I would have a severe migraine attack start, and it just never broke. I broke down because I just thought, 'I don't know how to live like this.' That's when I discovered an organization called Migraine Strong."

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Through the organization, Gorczyca was able to find neurological specialists and finally got the diagnosis that changed her life: she had a condition known as intractable migraine.

"Intractable migraine is a complex neurological disorder that essentially makes the brain more sensitive," she explains. "People see migraine as separate events, when sometimes there is actually a chronic cause — similarly to epilepsy causing seizures."

She continues: "And because of how it's been stigmatized for so long, even people with it don't understand it. And those living with it tend to downplay it."

Finally understanding the disorder, she says, was "a lightbulb moment."

"It was like, 'This is why you collapse after work. This is why you feel like you cant keep up.' "

She then began sharing her story on TikTok, and connecting with others who — like her — had endured migraine attacks for years and even decades before having a diagnosis that allowed them access to preventative treatments and medications to help combat the attacks.

Still, she acknowledges, "there's no cure."

Instead, Gorczyca has reframed "how I live my life," leaving her teaching job to work remotely, where she can be in control of her environment, allowing her to dim the lights as needed, or if she feels an attack coming on.

She also sees headache specialists virtually, allowing her to get access to experts she might not be able to otherwise.

"I still have daily attacks but I have seen an improvement in the severity," she says. "Now, they are probably severe 40% of the month, which is a really big improvement for me. I haven't had a day without a migraine attack since before 2020."

<p>Bernadette Gorczyca</p> Bernadette Gorczyca

Bernadette Gorczyca

Bernadette Gorczyca

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But she does now have tools to mitigate the experience — preventative medications, electrolytes, migraine glasses, magnesium baths, gentle movement, neuromodulation (non-invasive, FDA-cleared devices that treat the head with electrical stimulation) and acute medication she takes for rising attacks.

"The problem is I have way more attacks than I have pills," she adds. "So, I have to pick and choose when's the best time to take them."

And while she can control things like light and noise in her everyday environment, there are many other triggers — including her own hormones and even weather changes. But somehow, Gorczyca manages to maintain an optimistic attitude.

"Some of my attitude is a bit of masking," she says with a laugh. "But it's also a mindset. It's not a battle, it's just my circumstance. This is what I'm living with, so I'm going to live with it as best I can."

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