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

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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.

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Pain

 

Through Pandemic

 

 

Living with Trigeminal

Neuralgia

 

during COVID-19

 

By Hanna Shae Smith

 Author byline: Hanna Shae Smith is an award-winning journalist, student clinician, and daughter of a person with Trigeminal Neuralgia. Smith lives in Phoenix, Arizona, where she studies chronic pain neuropsychology and neuroscience, teaches emergency basic life support, and volunteers doing search and rescue/recovery.

 In hindsight of the year 2020, everyone will have their story of “where I was when it happened.” Where were you when the world went on lock down as the COVID-19 global pandemic rushed across the globe? Hannah Crazyhawk was at home, watching events unfold on television and social media as her friends and neighbors retreated to their homes and locked their doors with pantries stocked. As scientists and doctors grappled with the new threat, businesses were shuttered, employees sent home, classrooms closed, and lifestyles overturned in an instant. 

            “It was just one thing after another,” Crazyhawk says. “It just seemed really surreal.” 

The world has experienced a seismic health crisis – an occurrence which Crazyhawk has already encountered in her own life. So, while the rest of the population adapted to a new state of being, the psychology student’s lifestyle inside of her university housing apartment was mostly unaltered in terms of social interaction and daily routine. Drastic health concerns and social distancing have been part of her life for the past eight years as a person who is diagnosed with the chronic neuropathic facial pain disorder Trigeminal Neuralgia. 

Being diagnosed with TN is a catalyst to a life uncertain. There is currently no cure for the condition which varies patient to patient. One’s specific disorder could respond to medications or be medication resistant. Surgical intervention may prove successful or it may not even be an option available. The pain characteristics may vary in location and severity over time. What is effective for one patient may yield no results for the next. Patients then begin a journey of personal discovery as they partner with physicians to determine treatments effective for their unique condition and identify coping mechanisms that will increase their overall quality of life day to day. 

When a global pandemic arises, how then does a person with a lifestyle already disrupted by facial pain navigate a second tremulous health crisis? 

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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

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www.facingfacialpain.org

 Pat Akerberg

 

The Unnerving Impact

 

of Covid-1

 

on the Chronically ill

 

 

by Pat Akerberg

 

 

 

Let’s face it. Living with a debilitating chronic health condition and a global pandemic at the same time are a “double whammy” with unthinkable impacts. Trigeminal Neuralgia (TN) happens to be my medical vulnerability. Yours may be a different one putting you at risk.

Known as the “suicide disease,” TN is an excruciating facial pain disorder that is considered the worst pain known to medicine. With a tenuous prognosis, TN significantly compromises life quality and puts its sufferers at risk both medically and psychologically.

Covid-19 needs no introduction as it continues to hold a worldwide population hostage -- isolating, living in fear and starved for hopeful news.  Add living with a serious co-morbidity like mine or yours, and the stress of getting hit with the double whammy increases.

Destabilizing factors shared by TN (or your condition) and Covid-19 are several. TN patients, already vulnerable with compromised neurological and immune systems, have to be hyper-vigilant now about staying safe to avoid the scary risks Covid-19 can bring. The effects of this fear, stress and worry loom large when considering the possibility of our chronic conditions being compounded by Covid-19. 

“In my field, we have conducted a lot of work to look at what predicts who gets colds and different forms of respiratory illnesses, and who is more susceptible to getting sick,” says Christopher Fagundes, PhD, a psychological scientist at Rice University.  

“We’ve found that stress, loneliness and lack of sleep are three factors that can seriously compromise aspects of the immune system that make people more susceptible to viruses if exposed. Also, stress, loneliness and disrupted sleep promote other aspects of the immune system responsible for the production of proinflammatory cytokines to over-respond. Elevated proinflammatory cytokine production can generate sustained upper respiratory infection symptoms.”

With intractable pain, sensitized nervous systems are already compromised. Add prolonged anxiety and exhaustion to the isolation, loneliness and a loss of physical connections necessitated by social distancing, and the ground is fertile for hopelessness and depression to take root.

A form of medical neglect is taking shape too, making it harder to cope as important medical, ER or clinic visits and medication refills have been pushed aside by Covid-19.  Yet they remain urgent needs for those afflicted with ongoing conditions.

Caring families and friends are rendered helpless as they witness previously healthy, vibrant loved ones reduced by the chronic conditions that take them over.  Like Covid-19, the life altering stories of TN sufferers are hard to take in. Listen to what some are dealing with:

“I’ve had two surgeries for TN after medications were unable to stop the pain… recently, after 15 years, the pain has come roaring back!  The stress in my life caused by my inability to work during the Covid-19 isolation has triggered the TN pain… it has made it enormously worse… and I can’t even reach my doctor… sometimes I feel like giving up.”

“Things are ridiculously difficult right now. Everyone in our family is feeling it.  My husband and I feel defeated and my Mom feels stressed and overwhelmed. The kids are struggling, flip-flopping between difficult emotions. For nearly 5 years we have been telling ourselves that things will get better as we do our best to live in ‘survival mode.’ But we feel extreme failure as we are starting to see the damage survival mode has done. We aren't sure how to fix it or keep this ship afloat. It feels like we’re the Titanic after it hit the iceberg.” 

“When newly diagnosed, TN patients and their loved ones are worried sick when they discover its’ reputation as the suicide disease.  In searching for answers, they come up against gut punches instead – the discouraging lack of research historically, the poor performance of medications, and/or the disappointing impermanence or complications of risky treatments. Yet, the drive for relief is so great, they’re forced to roll the dice and choose among shortfalls.  Familiar with horror stories of what can go wrong, like a recurring nightmare they are haunted by what might happen to them, fearing their capacity to endure.” 

While we may all share the threat of this pandemic together, the truth is those of us deemed “at risk” can also feel alone as we cope with our personal medical plights. To counter such destabilizing vulnerabilities, we must recognize that the potential for this double whammy fuels an urgent need for HOPE and concrete progress now that can change lives for the better.

Hope and progress – in the forms of more research funding, lasting treatments, promising prognoses and encouraging scientific breakthroughs – can’t come soon enough! 

Pat Akerberg is a dedicated Volunteer and Supporter of the Facial Pain Research Foundation and a member of the TNA Facial Pain Association.

 

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

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Facing My Pain: Erin Canter

By Hanna Shae Smith

Author byline: Hanna Shae Smith is an award-winning journalist, student clinician, and daughter of a person with Trigeminal Neuralgia. Smith lives in Phoenix, Arizona, where she studies chronic pain neuropsychology and neuroscience, teaches emergency basic life support, and volunteers doing search and rescue/recovery.

 

This story is part of the Facial Pain Research Foundation’s series “Facing My Pain,” which shares patient and caregiver stories to combat loneliness, increase awareness, and provide information and insights to patients and practitioners. If you are interested in sharing your story as part of this project, please contact Hanna Shae Smith at This email address is being protected from spambots. You need JavaScript enabled to view it.m.

 

 

It seemed like Trigeminal Neuralgia took everything from Erin Canter. After being diagnosed, her entire identity shifted and she lost many critical aspects of what made Canter herself: the ministry she loved, her job, an active lifestyle, and social world. Canter recalls the depth of loss felt when TN caused her world to come crashing down. However, at rock bottom, one thought persisted above all others – even above the loss and the pain.

            “I thought, ‘No, this can’t be it,’” Canter says.

Canter decided to transform her life, reclaiming and rediscovering her identity while helping others who are diagnosed with Trigeminal Neuralgia do the same. Canter is a minister within the Christian religion, former nurse, and is well informed on developing close social spheres through social media to connect people who may be home bound due to illness. She has chosen to turn her pain into purpose and uses her experiences to connect people in pain.

 

Canter’s Diagnosis

Canter’s first experience with TN symptoms occurred in 2005 with what she describes as a “shock” sensation on one side of her lower jaw. She originally assumed the issue to be dental and scheduled an emergency visit with her dentist. The dentist assessed nothing abnormal and suggested perhaps there was an isolated irritation, offering the pull the tooth if Canter would like. She declined.

After this initial experience, Canter did not experience pain for another eight years until it hit once again in full force in 2013. While participating in a 5k in December, she was hit with an icy wind that triggered the same intense pain. This incident prompted a visit to her family doctor who began an investigation for diagnosis. Between documentation from multiple dental and ER visits, the doctor was able to put the puzzle pieces together and suggested Canter was diagnosed with Trigeminal Neuralgia. Canter began to see specialists, the first of which told her TN was only in the lower jaw and rejected the diagnosis. She moved on to a second neurologist who insisted Canter was only having migraines.

            “I said, ‘No, this isn’t a migraine,’’ Canter insisted. “I’m telling you, this is not a migraine.”

It was the third neurologist who put constructed Canter’s current diagnosis of bi-lateral, a-typical Trigeminal Neuralgia, Fibromyalgia, and Migraines.

At that time, Canter’s professional background as a nurse was both a blessing and burden to her. On one hand, she understood more thoroughly the information that her neurologists were telling her. On the other, however, she had experienced a TN patient prior and understood the implications of the disease.

            “When he said the words ‘Trigeminal Neuralgia,’ I said, ‘No,’” Canter says. “I knew a nurse who had it and I had worked with her and I would be in the conference room adjacent to her office and I could hear her in there. That’s how I knew what it was.”

Canter’s doctors started her on Tegretol which has been titrated up. They later added Lyrica to her medication regimen, which has been increased, along with neuropathic pain medication Amitriptyline to assist with sleeping. Due to medication side effects, Canter has lost one tooth and has had three crowns. Getting dental work done with TN is an incredible strain, Canter says, and she is appreciative of her dentist who she says is very considerate of her pain and holds regular discussions regarding her dental health.

            “I have IV sedations. It’s the same [hygienist] who comes in every time and they are just awesome. They take good care of me,” she says. “It’s a frightening experience and they just made it very comfortable.”

In brain scans including MRA and MRI FIESTA, no compression of the Trigeminal Nerve was seen, ruling out a microvascular decompression from her treatment options. She has underwent bloodwork to assess Vitamin B Levels and has been screened for other diseases with no resolution as to what has caused her TN.

            “It’s so frustrating because I don’t know what’s causing it,” she says. “I wish I knew.”

Canter visited with a neurosurgeon to explore other surgical options, however, he suggested holding off on surgical intervention as she typically experiences a 50/50 ratio of pain free to painful days every month. To supplement her treatments, Canter has attempted to adjust her diet and has tried aromatherapy and heat therapy.

Today, she describes her pain as crushi  ng, crawling, burning, and “red hot like fire.” Periodically when she experiences a flare, her face will break out with a rash that appears similar to acne. She finds that temperatures below 30 degrees greatly impact her pain level, and so she chooses not to go outside on those days. Setting these types of lifestyle boundaries, she says, has helped her to learn to better manage her pain. At this time, Canter says she is very happy with her medical team and is appreciative of the trusting relationship she has with her doctor.

            “I can call him anytime,” she says. “He is very good about that. I think you have to have a good doctor who’s willing to work and partner with you – not just sit there and tell you, but to listen and say, ‘Is this treatment acceptable to you.’ And he does that.”

 

 

Learning to Accept

Following diagnosis, Canter says she was in denial – stage one of the Kubler-Ross Grief Cycle which includes denial, anger, bargaining, depression, and final acceptance. She initially refused to take the medications doctors attempted to prescribe her. Though Canter was able to finish her master’s degree, she lost her job shortly after and is currently on disability. This complete upheaval of her life led Canter to the moment where she had to decide what she wanted out in the future.

            “That pivotal moment for me was when I said enough is enough,” she says. “There has to be something more … I have to continue to do what I do. I can’t just do nothing. I couldn’t just sit here and not do anything.”

Canter found renewed motivation in what had always inspired her previously: Helping others. As a minister and nurse, her entire life had been about connecting people and lending a hand to those in need. Determined to do the same for herself, Canter says she developed habits which have enabled her to reclaim aspects of her former life in a new way which enables her to assist an entirely new population.

“I still have my moments,” she says. “I just had a four-day flare up and it felt like just let me die. That’s how you feel, but at the same time, I just keep holding on to that hope that tomorrow is going to be better. I try to take one day at a time.”

Canter has a plethora of stories about encounters she’s had with people who she may never have been able to help otherwise – coworkers, church members, childhood friends. In this way, she believes her journey with TN has made her stronger and more capable.

            “It is a horrible thing. But, if you can turn your mindset to ‘that’s where I am,’” she says. “I view it as a way to get closer to God. I view it as a way to help other people because I understand what they’re going through. I understand what they feel. I’ve been through some of it and already have gone through those stages of grief. … I’m here at this point and time for you specifically.”

 

 

Social Media

Though Canters life has vastly changed, one thing has stayed the same: her desire to connect with people. However, being diagnosed with a chronic pain illness often means that maintaining a social life can be extremely difficult. Canter understands how TN impacts a person’s ability to be social – often reducing someone’s ability to go into public and sometimes causing relationships to be lost. This is where she says social media, when used correctly, can become a building block for relationships from the comfort of one’s own home.

“I’m not in the same room, but I can have the same relationship,” Canter says. “That’s a fantastic way for people who can’t get out and who are isolated. … I don’t have as much socialization that I had. I really have to work at that. You have to make more of an effort and that’s why I feel getting online was my effort. I’m going to be with people.”

Canter manages her Facebook group “Renew” for people like herself diagnosed with TN who hold spiritual beliefs within Christianity. She caters this specifically for people who are dealing with pain with sermons focusing on such topics. There are guest musicians and speakers who volunteer to share in the group. With her church, Canter also leads an online “life group” in which members meet via Zoom video conference to hold Bible studies. Through Zoom, a video-conferencing platform, all those in attendance can see each other in a virtual “face to face” format.

Platforms like Facebook Groups and Zoom are excellent methods of socialization for those who struggle to maintain a social life due to inability to leave the house much. It enables people to discover a community of like-minded individuals even if their experiences are as rare as being diagnosed with TN. Canter reminds social media users to be cautious, however. As a nurse, she understands how widespread misinformation can be online – especially on patient-led social pages in which the contributors are simply members of a group and not experts. Canter encourages those seeking online communities to understand the difference between research organizations such as the Facial Pain Research Foundation where medical and scientific information can be trusted, and online support groups where people can share their thoughts and feelings.

            “You really have to glean the information,” she says. “You really have to be careful.”

Canter also encourages members of social media to guard their mental health when engaging in patient-led social media support groups as much of the content posted there can be negative regarding the “bad days” which members are having.

            “You see a lot of negative things. You can get on there and be absolutely terrified,” she says. “I’ve got to live another 40 years with this. Am I going to live like this for the rest of my life? I hope not. So, let’s get some cures!”

Canter has been an active part of helping find a cure through fundraising for FPRF research – raising nearly $1,000 at her most recent event in October. It’s all part of her mission to live her life to the fullest and help others do the same in the process by cultivating healthy mindsets, engaging in social contact, maintaining hope for a cure, and rediscovering how to live life.

One of Canter’s favorite quotes is by 1800s preacher Charles Spurgeon: “I have learned to kiss the wave that throws me against the Rock of Ages.” Taking these words to heart, Canter says she lives every day using her experiences and pain to create purpose for herself and others.

            “This has not pushed me down under,” Canter says triumphantly. “It has pushed me against my faith.”