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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? 

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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