Laughing in the Face of Pain: Amy and Pat Tomasulo’s Fight Against Trigeminal Neuralgia

Laughing in the Face of Pain: Amy and Pat Tomasulo's Fight Against Trigeminal Neuralgia

by John Conrad| Sep 9, 2024| iBIO News

Amy Tomasulo battles trigeminal neuralgia, a rare neurological disorder that inflicts some of the most excruciating pain known to medicine. Diagnosed in 2001, she lives with a condition that affects approximately 400,000 Americans, causing intense, shock-like facial pain. Everyday actions like eating, talking, or even a light breeze can trigger agonizing episodes. Despite this debilitating condition, Amy finds an unexpected ally in laughter. Alongside her husband Pat, she's turning comedy into a powerful weapon against her daily pain battles, transforming laughter from a potential trigger into a vital lifeline.

On September 21, 2024, the Tomasulos will host their 10th annual Laugh Your Face Off fundraiser at Park West in Chicago. This event isn't just about bringing smiles; it's a crucial step in their mission to find a cure for trigeminal neuralgia.

Amy's Journey

Amy's battle with trigeminal neuralgia began abruptly 23 years ago when she woke up with excruciating pain on the left side of her face. "It felt like the entire side of my face had been smashed with a two-by-four," Amy recalls. The pain was unlike anything she had ever experienced, and it marked the beginning of a challenging journey.

Unlike many sufferers who struggle to get an accurate diagnosis, Amy was fortunate to be diagnosed correctly from the start. However, her relief was short-lived as she discovered she had an atypical version of the disease, characterized by a constant baseline of pain punctuated by severe episodes.

"I have not had one day in the past 23 years where I don't have attacks," Amy explains. "Every single day I get them. The constant horrible pain in my face has gotten better, but I still get the typical trigeminal neuralgia attacks every day."

Over the years, Amy has tried various treatments, including medication and facial surgery, but none have provided lasting relief. The condition has forced her to adapt her lifestyle significantly. Cold weather keeps her indoors during winter, while summer breezes that others find refreshing can trigger intense pain for Amy.

Despite these challenges, Amy maintains a remarkable sense of humor and perspective. "There are no really good days, but [there are] better days. I don't take any of those for granted," she says, her resilience shining through.

A Partner in Pain and Purpose

Pat Tomasulo, Amy's husband and partner in this fight, brings his own unique perspective to their journey. The couple met in Rhinelander, Wisconsin, just six months after Amy's diagnosis. For Pat, watching his wife struggle with a condition that many, including some medical professionals, don't fully understand has been a source of frustration and motivation.

"For me, it's [about] the doctors," Pat explains, recounting experiences in emergency rooms where Amy's pain has been drastically underestimated. "That's the most frustrating thing for me, when we know so much more than the doctors."

Rather than letting this frustration defeat them, Pat has channeled it into action. Together with Amy, he's become a fierce advocate for trigeminal neuralgia awareness and research. Pat's background in comedy and broadcasting has proven invaluable in their fundraising efforts, helping to bring attention to this often-misunderstood condition.

The couple's commitment to each other and their cause is evident in every aspect of their lives. Pat's attentiveness to Amy's needs and his determination to amplify her voice demonstrate the depth of their partnership. Their bond, forged through adversity, has grown into a powerful force for change in the trigeminal neuralgia community.

Navigating the Healthcare System

Amy's journey through the healthcare system has been fraught with challenges. While she received comprehensive care for her trigeminal neuralgia at the Mayo Clinic, other aspects of her medical journey have been nightmarish. One particularly harrowing experience occurred on the morning of her microvascular decompression surgery when her insurance company decided not to cover the procedure.

Amy recounts the devastating experience: "I got to the morning of my surgery and they told me my insurance decided not to cover it. We put out a huge deposit for the surgery and I did an appeal with my insurance. I had to go stand in a room with, I don't know, 12 people from my insurance company and tell them my story and I started crying and they looked at me and they said, 'We're not covering you. We're not covering it.' So that was a lot to take on."

The financial burden of trigeminal neuralgia extends beyond medical procedures. The medications prescribed for the condition are often expensive, and insurance companies are often reluctant to cover them, making it difficult for patients without good insurance coverage to manage their pain effectively.

Moreover, the condition has robbed Amy of her ability to work. "I haven't been able to work since probably a year or two into having this condition," she says. "My pain is every single day, and I don't know when I'm going to get the worst attacks. There's no rhyme or reason to it."

Laugh Your Face Off: A Decade of Hope

Over the past decade, the Tomasulos have transformed their personal challenge into a powerful force for change. Their annual event, Laugh Your Face Off, has raised nearly $4 million for the Facial Pain Research Foundation, becoming a beacon of hope in the fight against trigeminal neuralgia (TN).

The inspiration struck after Pat and Amy attended a fashion show benefiting the Foundation. Moved by the experience, they decided to leverage Pat's comedy connections and his role at WGN to create their own unique fundraiser.

"We always wanted to do something," Pat recalls. "When we found out there was a group dedicated to this cause, we immediately decided on the ride home that night, 'Okay, we're doing something.'"

The growth of Laugh Your Face Off has been remarkable. From raising $150,000 in its inaugural year, last year's event brought in $640,000. Pat is confident this year's total will exceed $750,000. The event now boasts nearly 140 sponsors, many of whom have supported the cause from the beginning.

"It's mind-blowing to think that 140 companies are interested in this disease that most people have never heard of," Pat marvels.

This year's event promises to be the biggest yet, featuring top Chicago comedians and an atmosphere of hope and determination. Pat describes it as "the biggest comedy fundraiser in Chicago," emphasizing that it's not just about raising money, but also about creating an experience that's fun, informative, and inspiring.

"You'll learn a bit about TN, walk away feeling optimistic and hopeful, and have a great time," Pat promises.

For those interested in supporting this worthy cause, tickets for the September 21st event are still available. If attendance isn't possible, there's still an opportunity to contribute through an online auction featuring vacation packages, concerts and celebrity meet & greets, in the days leading up to the event.

Looking to the Future

The funds raised by Laugh Your Face Off support the Facial Pain Research Foundation, an organization started in 2011 by former business professionals who were either trigeminal neuralgia patients or spouses of patients. The foundation funds novel, independent research projects aimed at finding a cure for the condition.

One of their most significant achievements to date is a genetic study that analyzed DNA samples from over 700 trigeminal neuralgia patients. The study, which took nearly a decade to complete, discovered four genetic mutations with a high probability of being directly responsible for trigeminal neuralgia pain, with another four mutations likely contributing to the condition.

These findings, published recently in a scientific journal, represent a significant step forward in understanding the underlying causes of trigeminal neuralgia. As Pat explains, "If we can really determine what the cause is of all of these different types of TN pain, that opens up the ability to treat these pains exponentially."

As the Tomasulos prepare for this year's event, their unwavering commitment to finding a cure shines through. Through comedy, they're not just raising funds; they're offering hope and bringing light to those living in the shadow of chronic pain. As Amy and Pat continue their fight, they're proving that sometimes, the best medicine truly is laughter, and that together, they can face any challenge that comes their way.

For those interested in supporting the cause or learning more about trigeminal neuralgia, the Tomasulos encourage reaching out. "We're always looking to hear from you," Pat says. "We're always looking to find ways that we can involve you in our fundraising and our volunteering. We're always looking for help in this fight."

In the end, Amy and Pat's story is one of resilience, love, and the transformative power of laughter. Through their tireless efforts, they're not just raising money - they're raising hope for thousands of people living with trigeminal neuralgia, proving that even in the face of debilitating pain, there's always room for a smile.