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

 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

Read more ...

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.”

 

 

 

 

 

 

 

 

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? 

THE PAIN-STRESS FACTOR

Being quarantined while the threat of COVID-19 made its way across the globe brought up common feelings of stress for all humankind. For those who experience chronic pain, physiological features of that reaction hold neurological response similarities with the stress response. Both processes share a “common behavioral model of failure to extinguish negative memories,” along with discrepancies which differentiate between post traumatic stress disorder, depression, and chronic pain. It is concluded that both chronic pain and heightened stress contribute to lesser wellbeing overall (Abdallah, Geha, 2017).

There are two models utilized by researchers when comparing the connection between pain and stress. First, that pain is stress which creates strain (Vachon-Presseau, Roy, Martel …Rainville, 2013). Second, that strain precipitates pain and leads to the maladaptive response which becomes chronic (Borsook, Maleki, McEwen, 2012). Perceptions of stress which are prolonged can overtime impact the allostatic – homeostatic – systems which can ultimately lead to disease or death (Ahmad, Zakaria, 2015).

Environmental stressors can lead to maladaptive processes in the brain, activating hormones in the hypothalamic-pituitary-adrenal axis which release transcription factors that impact neurological function in the long-term (McEwen, 2007). When a patient experiences acute stress – such as a sudden global pandemic including international quarantine – the autonomic nervous system is activated and can lead to increased blood pressure and the re-routing of blood to the brain and muscular tissue from the gastrointestinal tract (McEwen, 2007). Stress is also then connected with the limbic portion of the brain which shares the stressor with memory, current physiology, and then the rational of the patient’s decision making and behavioral reaction (Lupien, McEwen, Gunnar, Heim, 2009). PET and fMRI scan studies have indicated that a “reduction in limbic system activity is essential for the initiation of the stress response” (Pruessner, Dedovic … Lupien, 2008). Likewise, pain generates from nociceptive stimuli which is then interpreted and perceived by the brain and causes a reaction (Saper, 2000). Pain also instigates an autonomic response, however it is unclear if it also stimulates the HPA axis (Muhtz, Rodriguez-Raecke … Otte, 2013) (Goodin, Quin … McGuire, 2012). The hippocampus of the brain has been linked to pain activation (Ploghaus, Narain … Tracey, 2001). Likewise, basal ganglia dopaminergic activity additionally relates to the processing of pain including emotional processing (Scott, Heitzeg, Koeppe, Stohler, Zubieta, 2006). An individual’s level of stress in the perception of the experienced pain has been observed to influence the pain levels (Beecher, 2002). It has then been concluded that stress is “subjective, with different emotions contributing to its manifestations, often with conflicting effects on pain perception as evidenced by the analgesic and hyperalgesic responses” (Ahmad, Zakaria, 2015).

Erin Canter, who is diagnosed with TN, is a former nurse and Christian minister who hosts her own Facebook groups for people with chronic pain along with leading ministry groups online through her church and personally. She is passionate about connecting people and has long developed habits and provided information for people like herself who are isolated due to illness. Canter said that she did not experience a fluctuation of her Trigeminal Neuralgia pain levels in correlation to the stressors caused by the pandemic. She attributes this to her prior-learned coping mechanisms which she already utilizes to manage the daily stress and pain of living with TN. Overall, Canter says that the majority of the people in her chronic-pain community have fared well during the pandemic and remained optimistic and fortified their spirits collectively as they strengthened their online community during the time of additional isolation. However, she has been diligent to pay attention to those she has noted are struggling more. Canter said that one member of her online community was impacted negatively by the pandemic to the point of potential hospitalization. Providing this support has helped her own ability to cope with TN prior to and during the pandemic, focusing her mind on helping others.

“I kept very calm through this,” she says. “I do realize that it makes people more stressed and there is more anxiety and such. I did want to provide more support than usual. I added another church service on my group. I know people are struggling, especially people with mental illness. Isolation is not good for them and here they are.”

One of the areas where stress impacts in the brain is the arcuate nucleus, which is involved with the sensation of pain delivered from nociceptors (Tsigos, Chrousos, 2002). Acute stress has been shown to increase pain – hyperalgesia – and chronic stress reduces the activation of dopamine, a reaction which was shown to last up to 14 days following the stressor (da Silvia Torres, Cucco … Ferreria, 2003). 

“I’m trying to literally shelter myself from it emotionally, as well,” Crazyhawk says. “Before all of this started in February, it was a totally different world and now I’ve been sheltered this whole time and I’m afraid to go back out again.”

Crazyhawk says that she keeps up with current events primarily via LinkedIn and limits her access to mainstream news and social media. She has replaced time spent on those platforms with what have been for her more helpful and constructive hobbies such as journaling and art. Additionally, Crazyhawk is a student majoring in art and psychology with intent to pursue a PhD in neuroscience to specialize in adverse childhood experience, which keeps her busy.

 "I have been focusing on my therapy every week, my school, my scholarly stuff,” she says. “I’m doing all I can to not even think about it and it’s so hard because there has been so much unknown.”

The most difficult of all: Crazyhawk’s grandfather died from COVID-19. Her grandfather was one of the only supportive individuals in her family and she is uncertain when his memorial will take place or if she will be able to attend due to travel restrictions and difficulties.

“It’s not fair,” she says. “He was surrounded by people in hazmat suites when he passed. That’s definitely effected the way I’ve been losing it and pulling it back together every day.”  

LIFESTYLE CHANGES

As a former nurse, Canter said that she is accustomed with handling infectious disease situations, so she did not find herself overwhelmed regarding handling preventative measures. She homeschooled her granddaughter during the pandemic, who has asthma and is thus considered a high-risk patient. Canter and her husband completely isolated from everyone, including family. They ordered their groceries for delivery and Canter employed her medical experience to develop more stringent disinfectant strategies in their home.

“I don’t have as much fear myself because, having worked as a nurse, I have been around a lot of germs,” Canter says. “I think other people would, though, I think there was a lot of fear. There still is a lot of fear. I think it has kept people from going to the doctor or from going to the ER. I don’t think people are getting the care they need.”

Another health concern TN patients may face in addition to the impact of environmental stressor is that pain can weaken the immune system (Totsch, Sorge, 2017). Crazyhawk is diagnosed with immune disorders in additional to Trigeminal Neuralgia, which has led her to be extensively cautious during the COVID-19 pandemic.

"It’s changed a lot. I’m afraid because I’m more susceptible,” she says. “There was a lot of fear because I knew that, if I do get sick, it would be an absolute nightmare recovery and possibly very life threatening. I’m hiding. I’m doing everything I can to limit outside contact.” 

"Regardless of a pandemic, patients like Crazyhawk and Canter still require visits to their doctors and specialists. Crazyhawk said that many of her appointments have been transferred to a tele-med platform which, in many ways, has been a beneficial change. “It’s awesome and (the doctor) said she’ll continue honoring that,” she says. “I love it. Every week I can talk to my therapist, psychiatrist. It’s 100 percent easier.”

On the other hand, however, not all appointments can be conducted online and Crazyhawk says that many of her vital appointments with specialists or highly anticipated consultations were canceled. She was slated to see a specialist regarding a new treatment and the appointment has been canceled twice.

 “No one knows, it’s up in the air,” she says. “We don’t know what will happen, so we just push it off. That’s been really not good. That’s irritating to have the whole medical community saying, ‘Hang out in pain while we figure it out.”

Like many people with TN, Crazyhawk occasionally requires emergency intervention visits to the ER. For her, these visits are typically once every two months. While this was an attainable option for her previously, the pandemic has greatly hindered her willingness to seek that treatment despite there being critical times during quarantine in which she contemplated calling an ambulance because of the pain. Crazyhawk had to schedule an in-person cardiac appointment during the pandemic and said the process was grueling. Wearing a mask is quite painful for people with chronic pain, Canter points out. Crazyhawk says that the masks which hook behind the ears have been highly painful for her and she is looking into purchasing one that loops around the neck.

SOCIAL DISTANCING

In 2018, insurance provider Cigna conducted a survey in the United States of more than 20,000 adults over 18 years of age with approximately half stating they “sometimes or always feel alone” and with approximately 40 percent stating they “feel that their relationships are not meaningful and that they feel isolated” (Novotney, 2020). According to the most recent U.S. Census, more than 25 percent of American live alone, more than 50 percent are unmarried, and both marriage and childbirth rates dropped.

Loneliness becomes problematic when isolation is chronic (Novotney, 2020). Isolation can contribute to physical and mental health risks including smoking and alcohol abuse (Holt-Lunstad, 2015), depression, difficulty sleeping, impaired reasoning, cognitive decline, cardiovascular disfunction, and dampened immunity (Hawkley, 2015). Social distance also increases the risk of premature death “from every cause, for every race” (Alcaraz, 2019). Isolation is more likely to occur in a person who has “functional limitations and has low family support” (Novotney, 2020).

As a minister, Canter’s mission is connecting people and she said this became one of her main concerns for both group members who have Trigeminal Neuralgia and those who do not. She was cautious to pay attention to warning signs of mental health deterioration during the pandemic and once went through preventative measures to obtain the address of one particular person who she believed potentially posed a risk for self-harm.

“Overall, I think making sure people are connected to other people was my concern,” she says. “Making sure they were connected with me, making sure they are connecting with their family in some way, shape, or form. … Just making sure people didn’t slip through the cracks.”

As the population internationally has experienced isolation during the COVID-19 quarantine, Crazyhawk says that she sees a more empathetic approach for people like herself who live with loneliness due to chronic illness on a daily basis.

“I think that people now understand that,” she says. “I’ve had people in the past say, ‘It must be nice to be on disability and it must be nice to be in your pajamas and stay home all day.’ It’s a misconception that people have about being chronically ill. It’s not a luxury. … It takes so much away from you and now that people understand what our lives are like, I hope that they think before speaking and are a little kinder, a little more compassionate.”

Since the pandemic, Crazyhawk said that she has seen a shift in her community both in person and online. Following the death of her grandfather, she said that people in her neighborhood who didn’t even know her offered to bring meals and aid in whatever ways they could. Witnessing the benevolent side of human nature rising to the occasion in circumstances like these provides hope, Crazyhawk says. At the same time, she has strived to reject toxic positivity sentiments and allow space to grieve for the current situation and experience the gamut of emotions which a major public health crisis presents, while relying on others for support while experiencing the emotions. Like Canter, she moderates an online support group for people with chronic pain and said she has been mindful of maintaining that sense of community to foster kindness amongst humanity as we go through this time together.

“They’re not alone,” she says. “I would tell them it’s OK to be upset. It’s OK to be angry and sad and it’s OK to feel what you’re feeling. Let yourself feel it. Don’t berate yourself for being sad and angry. Let it happen and nurture yourself as you would a small child. Take that part of yourself and be kind to it. It’s not something to be ashamed of.”

      

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Holt-Lunstad J. (2015). Perspectives on Psychological Science, Vol. 10, No. 2

Novotney, A. (2020). The risks of social isolation. Monitor on Psychology, 50(5). Retrieved from http://www.apa.org/monitor/2019/05/ce-corner-isolation

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Pruessner JC, Dedovic K, Khalili-Mahani N, Engert V, Pruessner M, Buss C, Renwick R, Dagher A, Meaney MJ, Lupien S. (2008). Deactivation of the Limbic System During Acute Psychosocial Stress: Evidence from Positron Emission Tomography and Functional Magnetic Resonance Imaging Studies. Biol Psychiatry. 63(2):234–240. doi: doi.org/10.1016/j.biopsych.2007.04.041

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CODA Biotherapeutics

Announces

Research Collaboration

 

With The Facial Pain Research Foundation

Strategic partnership supports CODA’s efforts to develop gene-therapy mediated

treatments and cures for trigeminal neuralgia and related neuropathic pain

  

SOUTH SAN FRANCISCO, Calif., May 20, 2020 – CODA Biotherapeutics, Inc., a preclinical-stage biopharmaceutical company developing a gene therapy-mediated chemogenetic platform, today announced the formation of a strategic research collaboration with the Facial Pain Research Foundation (FPRF) with the goal of utilizing CODA’s chemogenetic gene therapy platform to identify and develop potential new therapies and cures for trigeminal neuralgia and related neuropathic pain.

Under the collaboration, CODA will work with the FPRF to establish a research continuum that is dedicated to identifying the mechanisms underlying neuropathic facial pain and to developing groundbreaking therapeutic strategies that aim to permanently stop the pain of trigeminal neuralgia and related neuropathic pain syndromes.

“CODA is aligned with the FPRF in the mission to develop innovative treatments and cures for patients suffering from trigeminal neuralgia and other types of neuropathic pain for which there exists significant unmet medical need,” said Michael Narachi, President and Chief Executive Officer, CODA. “This unique collaboration will help further advance our chemogenetic platform in neuropathic pain toward the clinic, and we are honored to be partnering with the FPRF on this important initiative to improve patients’ lives.”

According to the Facial Pain Association, trigeminal neuralgia is one of the most painful afflictions known to medical practice. A rare, progressive condition, it is a disorder of the fifth cranial (trigeminal) nerve. The classic form of trigeminal neuralgia causes extreme, sporadic, sudden burning or shock-like facial pain with episodes that last from a few seconds to as long as two minutes, and these attacks can occur in quick succession or in volleys lasting as long as two hours. Although it can occur at any age, including infancy, trigeminal neuralgia occurs most often in people over the age of 50, and is more common in women than men. Pharmacological treatment options include anticonvulsant medications used to block nerve firing and tricyclic antidepressants used to treat pain. Attacks often worsen over time and become more frequent, and eventually pain-free intervals disappear and medication to control the pain becomes less effective. Patients opt to have surgery, which may or may not be effective, as well as can exacerbate the pain.

Michael Pasternak, Ph.D., Founding Trustee of FPRF added, “We are delighted that CODA has joined with the FPRF in advancing our mission to find cures for trigeminal neuralgia and related neuropathic pain syndromes – a multitude of challenging conditions for which no cures  exist. We believe that CODA’s novel approach has the potential to make a significant difference in the lives of many in pain and are excited to work together on this important research collaboration.”

“CODA has begun testing its chemogenetically controlled inhibitory ion channels in preclinical models of neuropathic pain and this support from the FPRF will help assist the continuation of our efforts to demonstrate transformative results for patients,” said Orion Keifer, M.D., Ph.D., Vice President, Discovery and Translational Research, CODA.

About Neuropathic Pain

More than 19 million Americans suffer from chronic neuropathic pain. Neuropathic pain is caused by damage or disease of the sensory system, leading to chronic debilitation and loss of quality of life. Current pharmacological therapies for chronic neuropathic pain, such as opioids, anticonvulsants, and tricyclic anti-depressants, provide little relief while having significant side effects and a potential for addiction. Invasive nerve stimulation therapies require batteries and wires that need maintenance and carry a risk of infections and other complications, while offering limited efficacy. Surgeries that ablate areas of the peripheral and central nervous system are a last resort and can have permanent adverse effects.

About the CODA Platform

CODA’s chemogenetic platform aims to reverse the aberrant neuronal activity underlying many neurological disorders. With chemogenetics, dysfunctional neurons are modified using optimized adeno-associated virus (AAV) vectors delivered directly to them by standard-of-care neurosurgical procedures. The AAV vectors encode ligand-gated ion channels (chemogenetic receptors) that are highly responsive to specific proprietary small molecule therapeutics but are otherwise inactive. The activity of these receptors, and thus the aberrant activity of the modified neurons, is controlled in a selective and tunable manner through administration of the small molecule to generate significant therapeutic benefit with minimal side effects.

About CODA Biotherapeutics

CODA Biotherapeutics, Inc., is a preclinical-stage biopharmaceutical company developing an innovative gene therapy platform to treat neurological disorders and diseases. The Company is creating the ability to control neurons with its revolutionary chemogenetics-based technology. CODA is located in South San Francisco, CA. For more information, please visit www.codabiotherapeutics.com.

About The Facial Pain Research Foundation

In 2011, the FPRF stepped up to undertake a more hopeful paradigm for neuropathic facial pain conditions like Trigeminal Neuralgia (TN). By sponsoring and funding research aimed at stopping the debilitating pain, these first-ever research studies are the biggest leap towards finding the cause(s) and lasting cure(s) for TN in the last 1,000 years! The Foundations’ efforts include:  Sponsoring and urgently raising funds for 9 life-altering pain studies underway. Establishing and overseeing a consortium of the worlds’ leading pain scientists. Operating as a non-profit, all-volunteer organization that delivers 95-98% of all contributions from donations or grass roots events towards research funding. Building momentum by providing inspiration and hopeful encouragement to sufferers, caregivers, volunteers and invested others through news, interviews and progress updates via on-line & social media venues.

Media Contacts:

For CODA Biotherapeutics
Kathy Vincent

(310) 403-8951

This email address is being protected from spambots. You need JavaScript enabled to view it.

 

For The Facial Pain Research Foundation

Michael Pasternak, Ph.D,

352-377-1427

This email address is being protected from spambots. You need JavaScript enabled to view it.

Kristine Gaganidze, Communications Director

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