By Michelle Jaffee
As a corporate executive, Michael Pasternak was leading a retreat for 55 employees when, suddenly, he felt a jolt of searing pain stretching from his ear to his jaw.
He tried antibiotics, and when that didn’t work, he rushed to the dentist. But the attacks of pain would not abate — not in a week, not in a month.
For Pasternak, that day in March 1990 was the start of a decades-long quest. He sought answers — and a cure — for trigeminal neuralgia, the cause of his pain and that of thousands of others.
“It feels like lightning jabs you,” he said. “It puts you on the ground.”
So severe was the pain in his face that he kept increasing the dose of his medication, an anti-seizure drug used to block pain signals.
But when on two different occasions he momentarily fell asleep at the wheel from the sedating effects of the medicine, he knew he had to find a better way.
Before his symptoms began at age 47, Pasternak, who was a doctoral-level professor in organizational change at Vanderbilt University and co-founder of the retail chain Socks Galore, had never heard the words trigeminal neuralgia.
With an estimated 10,000 to 15,000 new cases each year in the U.S., the condition involves a malfunction of the trigeminal nerves, which connect the brain and brain stem to the upper, middle and lower parts of the face.
The disorder causes electric-shock-like pain, usually on one side of the face, lasting a few seconds or minutes.
“It is very severe. And the problem is that it can be triggered by the most common daily activities such as eating, talking, the wind hitting your face, washing your face,” said Barlas Benkli, M.D., an assistant professor in University of Florida’s Department of Neurology. “I actually have seen patients be hospitalized because they were not able to eat because of trigeminal neuralgia.”
Often, the cause is a blood vessel pushing on part of the trigeminal nerve root. In some cases, the dysfunction is secondary to another condition, such as multiple sclerosis, or a tumor.
“The idea in trigeminal neuralgia is there is a nerve that is sending the wrong signals,” Benkli said. “When, let’s say, people touch their cheek, instead of just sending this sensory stimulus, the nerve is also sending a pain stimulus, or the sensory stimulus sent by the nerve somewhere along the road becomes a pain stimulus.”
Commonly described as the worst kind of pain, sometimes even called the “suicide disease,” trigeminal neuralgia has become a focus for UF pain researcher Rajesh Khanna, Ph.D., director of the new UF Center for Advanced Pain Therapeutics and Research, known as CAPToR.
Even before Khanna, a top pain scientist, had arrived at UF last year from New York University, Pasternak had heard that he and his lab were coming.
In the early years of Pasternak’s diagnosis, he helped start a nonprofit called the Trigeminal Neuralgia Association, which organized support groups for people with the disabling condition. He hoped the passage of time would bring new treatment options.
“But it was the same things happening again and again and again,” he said. “And you begin to think ‘there’s got to be a cure.’”
He approached Albert Rhoton, M.D., founding chair of UF’s Lillian S. Wells Department of Neurosurgery, and Douglas Anderson, Ph.D., then director of UF’s Evelyn F. and William L. McKnight Brain Institute.
Pasternak wanted to know: What research is necessary to cure trigeminal neuralgia?
“I talked with them and a few other friends and said, ‘Let’s form a foundation whose primary purpose is to find a cure,’” Pasternak said.
What he proposed was a medical research foundation with international reach — one that would provide seed funding for new lines of research and encourage matching investments from the National Institutes of Health, other foundations and universities.
Thus in 2011 the group established the all-volunteer Facial Pain Research Foundation, an organization that since has grown to include board members across the country, 18 lead investigators and an army of patients and advocates who have raised over $15 million — or about $50 million total including in-kind donations, matches and other partnerships.
Among the investigators is Robert Caudle, Ph.D., of the UF College of Dentistry, who is testing a modified form of the chronic migraine treatment Botox as a potential way to block transmission of pain and avoid addictive opioids.
It is one of nine ongoing research projects underway in Gainesville; San Francisco; Durham, North Carolina; Newark, New Jersey; Portland, Oregon; Toronto; London and Tel Aviv.
Already, the research team has amassed the largest DNA collection from trigeminal neuralgia patients — 700 samples and counting, over 10 years.
The collection holds the potential to unlock genetic clues and bring scientists closer to a cure.
On Jan. 14, 2025, Pasternak huddled with Khanna at a table in UF’s Harrell Medical Education Building.
They were attending a McKnight Brain Institute research showcase, and it was an opportunity to review plans for the Facial Pain Research Foundation’s new $218,000 grant to Khanna to investigate a novel nonsurgical approach.
Khanna’s lab is developing an experimental compound to target a particular channel that sets pain in motion. While previous efforts to directly target this channel — called the Nav1.7 sodium channel — have been unsuccessful, the new approach involves an indirect strategy that so far has yielded promising results.
“This grant is really to solve or to get at the heart of trigeminal neuralgia and related neuropathic facial pain conditions, which are absolutely horrendously painful,” Khanna said.
“There’s a critical need for pain medications in this space, given that beyond surgery and a few other drugs that are typically tried and then lose their efficacy, there’s really nothing else,” he said. “People go through surgeries that can relieve the pressure on the nerve, and that leads to relief in many cases, but in many, that pain will return.”
As a laboratory scientist, Khanna is typically looking through a microscope rather than at the faces of patients. But in September, he joined Pasternak at the foundation’s 10th “Laugh Your Face Off” fundraising event in Chicago. The sellout crowd raised over $824,000.
“It’s very personal for them,” Khanna said. “There are actual patients at these meetings and fundraisers, contributing to it because they know so much about the disease, because they suffer from it.”
Thirty-five years have passed since Pasternak felt the first shocks of pain.
Now 82 and a trustee emeritus of the foundation, he continues to fight for a cure — even though he himself has been in remission and pain free for 32 of those years.
In 1993, in Pittsburgh, he underwent a neurosurgical procedure called microvascular decompression surgery, which involves placing a small pad between the trigeminal nerve and the blood vessels next to the nerve. It worked: His pain did not come back.
But the intense pain attacks he experienced for those three years forever made their mark.
Following a move from Nashville to Gainesville, he couldn’t stop thinking about what he went through — a mix of immense gratitude for being pain free and a deep concern for others who were still searching for relief. He recalled, with horror, his two near-accidents while driving — one in which he went off the road and another when his wife grabbed the wheel.
“There were people on my hospital floor who had surgeries like I did, and for them, the pain did not stop. They weren’t successful surgeries,” he said.
He turned his home in Gainesville into home base for the budding foundation.
In the years since, Pasternak has served as a voice for patients who are suffering, said Jennifer Bizon, Ph.D., director of the McKnight Brain Institute and chair of UF’s Department of Neuroscience.
“Over the years, I have gotten to known Michael Pasternak through his passion and tireless advocacy for patients with trigeminal neuralgia,” she said. “He has devoted himself fully to alleviating their suffering.”
A huge part of his drive, Pasternak said, is he believes a cure can be found.
“I wish I could give more words for what keeps me going,” he said.
Championing the cause, he said after a moment, “it’s like …
“… like breathing.”
To learn how to support the MBI’s facial pain research efforts, click here or contact Senior Director of Development Caitie Deranek Stewart at stewartc1@ufl.edu.