TN and Me:
A 15-Year Odyssey
By Mervyn Rothstein
Mervyn Rothstein and Michael Pasternak
Mervyn Rothstein was a writer and editor at The New York Times from 1981 to 2011. He has written for Playbill and Playbill.com for 29 years and was a member of the Nominating Committee for Broadway’s Tony Awards from 2011 to 2014. He is a longtime volunteer writer for the Facial Pain Research Foundation. This essay is offered with the intent of giving readers some idea of what one person’s experience with Trigeminal Neuralgia has been like, and in the hope that it will help persuade them to be a part of finding a cure.
In the beginning, there was the pain. It was spring 2005. I was sitting at my desk at The New York Times editing an article for that Sunday’s Real Estate News section. As soon as I finished, I could leave work and go home and continue packing for a much anticipated weeklong vacation in Paris. My wife, Ruth, and I were leaving the next afternoon. And then I suddenly felt a sharp, piercing electric shock in my teeth and gums on the bottom right side of my face. And then another. And another.
“Oh, no, a toothache,” I thought. I didn’t know, because I had no idea it existed, that I was experiencing the first symptoms of Trigeminal Neuralgia, the kind of agony typical of the disease, one of the most painful illnesses known to humanity.
It is said that the pain is the most torturous that people can feel. There’s a reason Trigeminal Neuralgia is nicknamed the Suicide Disease — for those who can get no relief, death becomes a viable option. No known cure exists; surgeries, treatments and medications exist, but their success can be somewhat limited and often not long-lasting.
The timing couldn’t have been worse for a toothache, I thought. Have to pack. No time for a dentist. If it continues or gets worse, I’ll find a dentist in Paris. Or maybe it’ll go away on its own. But of course it didn’t — at least not for long.
And so began my complex odyssey, one somewhat akin to Ulysses’ in Homer’s epic poem. There were adventures and misadventures, pain and suffering, and, finally, a return to near normalcy. This is my tale of that odyssey, its ups and downs, perils and pitfalls, hopes denied and hopes achieved.
Fighting Facial Pain Around the World
An Interview With Myron A. Hirsch
By Mervyn Rothstein
Mike and Harriet Hirsch
The first night, ten years ago, that Myron A. Hirsch put the Afternoon Edition, the Facial Pain Research Foundation’s web newspaper, online, he received an email.
“It was midnight,” says Hirsch, the Afternoon Edition’s creator and editor, known to everyone as Mike, and this email comes through. The first email. I open it, and the person writes, ‘My five-year-old wakes up and says, “Mum, why me?” And he’s in pain. So I started looking for help. And I found you. Can you help me?”
“Mum” was referred to a surgeon who had operated successfully on five-year-olds with Trigeminal Neuralgia. “She had emailed from London England,” Hirsch recalls. “The doctor emailed her and said if she brought her son to him in California for an examination, and the diagnosis was appropriate, he would do the operation gratis." And that’s when I realized I could reach a worldwide audience. ”
Hirsch is a founding trustee of the Facial Pain Research Foundation, which is celebrating its 10th anniversary. It was begun on January 8, 2011, to raise funds to finance research into finding a cure for Trigeminal Neuralgia, one of the most painful diseases known to humankind, and other facial neuropathic illnesses.
It has raised more than $7 million to fund nine distinct research programs. The Foundation has also helped to create two venture-capital research corporations. The $7 million has also served in a “multiplier capacity“ resulting in more than $60 million in venture capital, National Institutes of Health or other funding sources for research into a cure.
One thing that thrills Hirsch, who is 92 years old, is the Afternoon Edition’s international reach. “The email proved to me that we can get around the world,” he says. “Someone in Eastern Europe wrote an opera and is giving the proceeds to us. I start every afternoon with a different story. The scientists write about their work. You, Merv, interview the scientists and write about your experiences with Trigeminal Neuralgia. Others write about their experiences. The stories travel far.”
Hirsch says he became involved with the Foundation “because I have to find a cure for Trigeminal Neuralgia for my wife, Harriet. We’ve been married 67 years. I felt her pain in my heart. My brain didn’t have a clue as to why she had it.”
His wife first suffered from the disease in 1994. After many pain-free years resulting from a Gamma Knife® radiation procedure, she experienced a return of Trigeminal Neuralgia in August 2010. Right now she is again pain free.
Hirsch, who lives in Naples, Florida, is an author, editor and book publisher who founded Whitehall Printing Company, a book manufacturer, in 1959. His company has printed thousands of books each year, including educational books on neuropathic facial pain for patients and their families as well as health-care professionals. He is also editor-in-chief and publisher for Collage Books. He is a former president of the Trigeminal Neuralgia Association-Facial Pain Association, and was an active board member for eight years.
He decided the best way to create the web site was as a newspaper. “I thought to myself, What’s the most-read newspaper, with all the news that’s fit to print? The New York Times. I thought I would emulate it in an amateur way and keep giving all the news about Trigeminal Neuralgia and nerve pain.”
He feels the site has been very successful. “It’s been a place where families who are suffering can come to. They hear about us through word of mouth, and they find that an awful lot of people want to help in some way.”
The newspaper is a forum where people can exchange information and ideas, such as ways to raise money. “Some people run races as benefits,” he says, “some have marathons, and I report on all that. And I get emails from more people who would like to have a race as a benefit, and I refer them to people who have already done that, who know how to organize. We’re sort of like a town hall.”
“We also provide knowledge about the disease. Many people think only middle-age or older people can get it. But we show them that children suffer from it as well.”
“And we give hope. We had a story about a little girl, Emily Garland, who was suffering, and a decade later, we showed a picture of her on horseback. She doesn’t have the pain. Think of the hope that gives to someone who thinks they’re doomed forever. Not if the scientists keep working. These stories enlighten people.“
One of the Foundation’s most important accomplishments, he says, was creating a consortium of scientists to get together to discuss their research into finding a cure for facial pain, compare notes, talk to each other, see what everybody else is doing.
“ Let’s just talk together,’ we said. And a few years later the U.S. government said, ‘Could we send somebody to your consortium?’ We said sure. It keeps growing and growing. You can’t stop this railroad. Because there’s too many people running it.”
What would he say to people suffering Trigeminal Neuralgia pain about the hope for a cure?
If we succeeded in putting a man on the Moon in only ten years, if we in America were able, in less than a year, to come up with a vaccine to stop the carnage of Covid-19, I think that in my lifetime — and I’m 92 — we’re going to have a cure for pain that is registered in the brain.”
Mervyn Rothstein was a writer and editor at The New York Times for 30 years, a reporter and columnist for Playbill Magazine for 29 years, and a member of the Nominating Committee for Broadway’s Tony Awards from 2011-14. His first symptoms of Trigeminal Neuralgia appeared in 2005.
First Published 12 January 2011
EMILY'S STORY
By Laurel Garland
In 2003, When Emily was about 2 ½ years old, I remember her starting to cry at the table one day when she was eating. I thought she had bitten her tongue or her cheek. It didn’t seem like anything serious, so I just comforted her and thought nothing of it. It happened a few more times at the dinner table over the next few days, so I thought she had done it again. I checked her mouth and didn’t see anything. She was talking, but didn’t have enough words to tell me what had happened.
After several weeks, a similar incident occurred, and I reacted in the same way. Over the course of the next year or so, this happened from time to time, and I really thought she had just bitten her tongue or something. Several weeks or even months would go by in between and I would completely forget about it. After a while I started to think it must be a toothache, so when she was 3 I made an appointment with a dentist and took her in. He did a visual exam and said that it wasn’t a toothache because he would be able to see it if it was bad enough to be causing pain. I didn’t know what to think. Very soon after the appointment, the pain disappeared again and I guess I just decided it was over.
Within a few months, she started crying and putting her hand to her cheek in the bathtub. She has always loved her bath, and even loves to have water dumped over her head. She can’t get enough of the water. Looking back, I think when she started having trouble in the bathtub it was from water splashing on her face. I didn’t know it at the time and again wrote it off to a cheek bite or something. All she could tell us is that her cheek hurt. She wasn’t able to describe the pain or articulate what was happening. Again, these occurrences were extremely irregular and unpredictable, with several weeks or months in between, so I tended to forget about it when the pain went away.
I think when we really started to realize something was going on, she was close to 4 years old. The pain was becoming worse, more frequent and it was lasting longer. She started to have pain when we brushed her teeth and when we would dress and undress her. She also would have trouble sometimes if I kissed or touched her cheek. The hard part was that these “triggers” didn’t always cause pain, so it seemed like there was no pattern. I was completely confused and didn’t know what it could be. I thought again that she must have a cavity, so I took her back to the same dentist’s office. She was examined again with the same result. I was really starting to be concerned and frustrated.
At that point we decided we should take her to her pediatrician. As always, during the exam Emily was completely fine, even when the doctor would poke and prod her cheek and mouth. So, the doctor had to go strictly by my explanation. Emily still couldn’t really describe it (the pain) herself. The pediatrician examined her and recommended that we should go to an ENT because she thought Emily might have stones in her salivary glands.
At the ENT appointment, the doctor did an exam and said that she didn’t have stones in her glands. He didn’t know what else it could be, so we left without an answer. He said to come back if it got worse. I was unhappy with that recommendation because we had been dealing with this for at least a year by now. I knew it wasn’t going to just go away.
Gator Dentist Today
Trigeminal neuralgia is probably the worst pain condition a person could ever have and we don’t know what causes it,” said John K. Neubert, D.D.S., Ph.D., an associate professor in the UF College of Dentistry Department of Orthodontics. “It’s lightning bolt pain going off in your face hundreds of times a day. TN is 10-out-of-10 pain, the most pain one can experience. We are thankful for the support of the Facial Pain Research Foundation. They do a lot to fund research for this horrible disease, enabling us to pursue research aimed at a cure.”
For Michael Pasternak, Ph.D., the mission of the Facial Pain Research Foundation is personal. After a long and illustrious career, Pasternak found himself suffering from trigeminal neuralgia. A founding trustee of the foundation, he was one of the lucky ones: surgery helped cure his searing pain. A majority of people are not so lucky. Considered a rare disease, TN occurs most often in people over age 50 and, according to the National Institute of Health’s Institute of Neurological Disorders and Stroke, the incidence of new cases is approximately 12 per 100,000 people per year.
The FPRF is the brainchild of seven professionals across the United States, including Pasternak, who created the first international consortium of scientists from 14 different U.S. universities and two international institutions to work together to cure the disease. The foundation funds the most innovative research projects aimed at finding a cure to end the electric shock-like pain caused by irritation of the trigeminal nerve, whose branches extend to the forehead, cheek and lower jaw.
The foundation has no employees; all monies raised through grassroots fundraising efforts coast-to-coast in the U.S. and overseas go straight toward trigeminal neuralgia research.
“The money we raise has character,” Pasternak said. “It has dignity and heart.”
The FPRF is currently funding two UFCD researchers, Neubert and Robert M. Caudle, Ph.D., for over $330,000 this year toward research projects to investigate TN. Neubert’s project, “Mapping Towards a Cure – Identification of Neurophysiologic Signatures of Trigeminal Neuralgia Pain,” and Caudle’s study, “Exploring Neuropeptide Guided Botulinum Light Chain for Use in Blocking Pain Transmission,” are two related ongoing studies.
“People overuse the word hero, but these guys are heroes. They are outstanding scientists,” Pasternak said.
Neubert and colleagues at UF’s McKnight Brain Institute, including Todd Golde, M.D., Ph.D., from the UF Department of Neuroscience in the College of Medicine, Mingzhou Ding, Ph.D., from the UF Department of Biomedical Engineering and Marcelo Febo, Ph.D., from the UF Department of Psychology, have been looking at preclinical models with trigeminal nerve pain, then comparing those models with human imaging and MRI studies of people who have TN. The imaging studies are designed to help researchers determine where the pain originates.
Note: Dr. Joanna Zakrzewska at the Pain Management Centre, National Hospital for Neurology and Neurosurgery in London, UK is the International Research Coordinator for the Facial Pain Research Foundation.
She is also a member of the FPRF International Consortium of Scientists. The FPRF assisted in the funding of the research article printed last month in the Journal of Headache and Pain. The results of the study clearly indicate that present treatments for TN don’t work well for sufferers….”there remains an unmet need for additional treatment options.
Clinical trial of new
Trigeminal Neuralgia
Treatment
The Facial Pain Reseach Foundation (FPRF) is pleased to announce that several of our research programs have reached the milestone that human clinical trials are being planned over the next two years. As such, we would like to invite you to apply to join a select group of your fellow TN sufferers by volunteering to be a potential participant in these future human clinical trials supported by FPRF funding.
We recognize that not all TN patients are in the same place in their journey to stop their trigeminal neuralgia (TN) pain. But we are frequently contacted by patients looking for information on potential new cures for their pain and we want to make you aware that there is now a way for you to volunteer to participate in upcoming human clinical trials.
Not all patients can be included in all clinical trials. We will begin by considering and evaluating some of the most complex, difficult cases (in our awareness) for best fit. This two-pronged approach holds the strongest potential to benefit both severely disabled patients while advancing the pace of the research.
Volunteering does not obligate you to participate in any clinical trial. It is simply an indication of your interest to be one of the first patients contacted when trial recruitment begins. You will be provided with full information about any potential clinical study before ever needing to decide if you wish to participate.
Also, volunteering does not guarantee you an early spot in a clinical trial. Caution may be warranted in some cases where a new treatment being trialed for the first time, is seriously contraindicated in patients based on medical conditions or previous histories of TN treatments.
We will strive to include our volunteers in the first trial of every therapy; however, the final selection must be made by the scientists running the trial in compliance with the FDA stipulations. If the first trial of a treatment is not a good match, we will endeavor to have trial volunteers included when the second clinical trial on any treatment is ready.
Depending upon the study, the FPRF may also offer financial assistance to offset some of the costs of traveling to clinical study sites.
If you wish to become a trial volunteer or have questions, please email Pam Neff, Volunteer Clinical Coordinator at This email address is being protected from spambots. You need JavaScript enabled to view it. with your contact information. Pam will get in touch with you to collect some basic information to help determine which clinical trials may be the best match for you. No information that you provide will be shared with anyone beyond the scientists conducting the research studies.
Since most foundation trustees have experienced or are experiencing TN pain themselves, be assured that the urgency needed to stop the pain and ‘get one’s life back’ is understood.
Wishing you all the best,
Jerry Krbec Trustee
This email address is being protected from spambots. You need JavaScript enabled to view it.
www.facingfacialpain.org
Chronic Pain Collateral: Beverly Hannibal
By Hanna Shae Smith
This story is part of the Facial Pain Research Foundation’s series “Chronic Pain Collateral” which shares caregiver stories to combat loneliness, increase awareness, and provide information and insights to patients, caregivers, and practitioners. If you are interested in sharing your story as part of this project or as a person with TN for our patient series “Facing My Pain," please contact Hanna Shae Smith at
This email address is being protected from spambots. You need JavaScript enabled to view it.
Something was wrong with her child.
Beverly Hannibal just knew it.
She knew because she is Rebecca’s mother: She carried her child close to her heart, knows every note of her favorite song, how the light of excitement dances in the colors of her eyes, what makes her laugh and cry. She knew because she is Rebecca’s caregiver. Rebecca may be nonverbal with the mental capacity of a toddler, yet Beverly speaks the language of her daughter fluently and witnesses each ability she holds to facilitate a world in which Rebecca is the protagonist. The mother-daughter duo spends every day of their lives together, Beverly lovingly and diligently caring for her child
So, when Beverly knew something was wrong, she did not doubt the signals that her daughter was in great, immeasurable, indescribable pain as if some unseen monster had crept into their home. The name of the monster? Trigeminal Neuralgia – often called the worst pain known to humankind. Even after Rebecca was officially diagnosed approximately one year following symptom onset, there were still many questions left unanswered for Beverly as she watched her disabled daughter. Still, there was one thing Beverly knew with utmost certainly: She would never stop fighting for her daughter as they faced whatever would come next.
FACIAL PAIN RESEARCH
FOUNDATION
2019-2020 Research Progress
Compiled and Submitted
June 2020
By
Douglas K. Anderson, Ph.D.
Eminent Scholar Professor and Chair Emeritus
Department of Neuroscience
University of Florida College of Medicine
Director of Research and Trustee
Facial Pain Research Foundation
And
Jerry Krbec MBA, Michael PasternakPh.D.
Trigeminal Neuralgia (TN), is a prime example of neuropathic pain which is pain caused by injury to or malfunctioning of the nervous system and is considered to be one of the most painful disease conditions known to humans. In addition to the debilitating effects on the lives of those afflicted with neuropathic pain, the cost disorders like TN adds to the U.S. health care system exceeds $100 billion/year. Yet despite the obvious escalating and pain fueled humanitarian and economic crises, funding targeted at discovering the basic molecular mechanisms underlying neuropathic pain conditions from traditional federal agencies, continues to be inadequate. The meagerness of funding from these traditional sources has led the growing realization that discovering the root cause of and treatment for TN and other neuropathic pain conditions is going to have to be accomplished with funding from the private sector. To this end, The Facial Pain Research Foundation (FPRF) was created a little over nine years ago in January 2011 to provide the critical elements that are necessary and sufficient to study these facial pain conditions. Consequently, the sole mission of the FPRF is “…to establish a well-funded translational (i.e., fundamental discovery to clinical application) research continuum that is dedicated to identifying the mechanisms underlying neuropathic facial pain and to develop novel new therapeutic strategies that will permanently stop the pain of TN and related neuropathic pain syndromes”. Since its inception, the FPRF has raised over $6,5 million dollars to support nine separate and distinct research projects. The FPRF uses three fundamental criteria in choosing which proposals are to be considered for funding: (1) the projects are novel, unique and perhaps even a little risky which I define as an “educated longshot” (2) the investigator(s) responsible for each project are among the leading researchers in their respective fields; and (3) there is significant diversification in the research strategies among the projects. It is important to note that these FPRF funds have also served in a multiplier capacity in that some of our investigators have used FPRF support as seed funding to generate the necessary preliminary data which contributed to these investigators acquiring large grants from the NIH and other foundations and, in some cases, the acquisition of venture capital. Total dollars from other sources that came to our consortium of investigators emanating, all or in part, from FPRF seed funds, is estimated to be somewhere over $50,000,000.
The purpose of this yearly update is to briefly highlight the progress made in selected projects in 2019 and to date in 2020. Whereas in past reports I have attempted to present something about all funded projects irrespective of the progress made. However, the chaos and devastation caused by the highly infectious Covid-19 disrupted the substructure and organization of many sensitive non-vaccine development medical programs. Most of the labs conducting our research were closed for months due to the Covid crisis. Important data was lost, and all our programs were substantially delayed. At my request, some of these investigators have described how covid-19 impacted them causing their research to shut dow
Facial Pain Research Foundation
2019-2020 Research Update
The William H. and Leila A. Cilker Genetics Research Program
to Find a Cure for Trigeminal Neuralgia
Finding the Genes that Predispose to Trigeminal Neuralgia
Scott R Diehl, PhD,1 Kim J Burchiel, MD,2 and Ze’ev Seltzer, PhD3
1Department of Oral Biology, Rutgers University School of Dental Medicine; 2Department of Neurosurgery,
Oregon Health & Science University; 3University of Toronto Centre for the Study of Pain
