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 email@example.com
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.
Rebecca, called Becky by her mother, began experiencing symptoms when she was 18 years old following a dental trauma. One week after the incident, Beverly noticed odd behavior from Becky. The teenager would not eat or drink, she held her face in her hands, experienced facial swelling, became extremely sensitive to temperature, and she continually laid on the floor refusing to get up. “I kept saying something’s wrong with her face on that side, the right side,” Beverly says. “I kept going back to the dentist and they couldn’t figure it out. Nobody knows anything.”
Naturally assuming the pain was dental related due to the injury, Beverly started with arranging dental consultations for her daughter and she had two tooth extractions. However, once the antibiotics wore off, the pain returned. In total, Becky has been seen by 23 doctors. There were times when she was unable to eat and, on one occasion, her weight was reduced to 72 pounds with a BMI so low that physicians began an IV for fluids and contemplated starting a feeding tube. One doctor offered a referral to a psychiatrist. Multiple clinicians conducted lab work and scans, which all returned clear. Beverly said that an unfortunately large sum of physicians who she saw made her feel ignored, as if she were imagining her daughter’s symptoms. She said that this caused her to learn how to become a better advocate for Becky and seek out doctors who were good listeners and willing to partner as caregivers for her daughter’s health.
“We need doctors to listen and not just think that we are trying to get drugs,” she says. “If you see the person has significant neuralgia on a scan and you see the symptoms and you see that, you can’t just blow it off.”
Symptoms can be difficult to gauge in cases of neuralgia. Becky’s situation made it even more difficult for everyone involved. To this end, Beverly had to become an expert on every signal her daughter projected. Becky’s mental capacity is similar to that of a toddler of approximately 3 years old and she is nonverbal. Because of this, it is extremely difficult to ascertain exactly what she is experiencing. Beverly would ask where Becky was feeling pain and she appeared confused, pointing at random body parts, yet always returning to holding her face. “Some of it, I think she understands. I think she understands, ‘I’m having pain,’” Beverly says. “I think she knows that, ‘This hurts and I want this to stop and somebody stop this,’ but I don’t think she knows what to do or the extensiveness of things.”
Approximately one year following the onset of symptoms, Becky connected with a neurosurgeon in Baton Rouge who discussed Becky’s situation over the phone. Beverly sent the physician videos of Becky and he suggested that it was possible her daughter had Trigeminal Neuralgia. One year after symptom onset, she was officially diagnosed and has faced the disorder for eight years total. Becky is additionally diagnosed with cerebral palsy and microencephaly.
A neurosurgeon initially elected to place Becky on Tegretol and Carbamazepine, which she acclimated to after approximately two weeks, enabling her to begin eating again. Today she is taking a combination of Gabapentin, Carbamazepine, Lamotrigine, Baclofen, and Amitriptyline, which have proved very successful for her case. Becky is not a viable candidate for surgical intervention, which physicians believe could be detrimental to her wellbeing.
Like most people with TN, Becky’s pain comes in waves. Because she is nonverbal, Beverly’s clues to her daughter’s pain level are all physical reactions and it is not difficult to discern when she is in pain. She knows that Becky is experiencing a flare when her body movements become erratic, her face becomes inflamed, she has lip movements, and mumbles. When the pain is exceptionally bad, Becky will often drool and lays down constantly. Warm compresses and baths seem to aid in the pain, Beverly says. The mother has studied, day in and day out, the precise details of her daughter’s triggers and behavior. She knows down to the slightest lip twitch what her daughter might be experiencing and has dedicated her entire life to figuring out how to respond to those needs.
“I just can pinpoint that she is hurting,” Beverly says. “I can hear it in her voice and know that she is hurting or just see her face and her expressions. … I can’t feel it, but I can see it in my daughter’s face.”
There is a sign taped to the doorbell because the noise can spike Becky’s pain. Fans are unacceptable. Social situations prove incredibly difficult and sometimes impossible. Sometimes even going to the grocery store can be a gamble.
“It’s kind of stressful for me, I don’t want to go anywhere,” Beverly says. “She’s had [flares] in the middle of the store and I’m trying to help her and pay out with my groceries. … People just stare at us and think it’s a behavioral situation. They don’t pay any attention to us. A lot of them stare. A few of them have come asking if they can help. She’s trying to come out of the chair. Once she’s laying on the floor, I can’t get her up. What they see is that she’s out of control. Well, she’s hurting. I just say she has a condition; she’s having pain. I’ve had a few people help me, but most people don’t do anything.”
Beverly is Becky’s full-time 24/7, 365 days a year caregiver. She recently became employed with an in-home caregiving agency with a program that assists family members to be paid for the long-term care of their loved ones. Because Beverly is caring for her daughter on and off the clock, she says she understands how critical it is to take care of herself so that she can continue to take care of Becky. Her meal plans are very health and she does her best to keep them active going swimming or on walks. Beverly takes steps to maintain her mental health and practices a religion which she says has been very encouraging for her to get through difficult times.
“I just try to focus on each day as a positive day and we’re going to get through whatever kind of day we’re having. It will pass,” Beverly says. “I am the only person she has.”
Becky’s twin brother is an honor grad and graphic design major who lives in California with his wife, so is not local to provide in-person aid. Beverly’s husband of 16 years is no longer part of their lives, having left when the twins were only seven years old. Beverly, a former pre-school teacher and now single mother, had just quit her day job to spend more time taking care of Becky when her ex-husband abandoned the family.
“I didn’t know what to do. I had always depended on him,” she says. “There was no reason. I guess he couldn’t take the fact that he had a disabled child and we had a lot on us. So, I made it through that.”
On her support team, however, are her ex-husband’s parents who are in their 70s and 80s and assist with caring for the home and Becky. On occasion, Becky’s grandmother will babysit her so that Beverly can go out of the house. Because of Becky’s communication barriers and critical health needs, caring for her can often be difficult for anyone who does not know her very well. Additionally, Becky can become physically distraught when the pain intensifies, and this can prove challenging for some caregivers to handle.
“She’s really strong and fights you because she’s trying to get away from the pain,” Beverly says. “Her body is just trying to be comfortable and she’s hurting. She can’t be still, and she doesn’t know what to do. She sits on the floor and rocks back and forth.”
Provided through caregiving agencies is a caregiver respite program which offers an outside professional direct care worker who can tend to the patient while the family member takes time for themselves. Beverly said that she attempted the program prior, however, did not find a caregiver who was equipped to handle the severity of Becky’s situation. It is traumatizing to see a disabled young woman in such extreme levels of pain. So, Beverly spends the majority of her time with her daughter as her primary caregiver who understands her triggers and signals in detail.
“I get burned out, but I would rather do this and know that I’m taking care of her than have an idiot come in who may be abusing her or not taking care of her,” Beverly says.”
Today, Becky’s situation has improved, though not before it got worse. She recently underwent two root canals to reduce pain caused from the damaged teeth. A dentist in Florida who was familiar with TN and TMJ viewed X-rays of Becky’s teeth and located an abscessed wisdom tooth, which was treated by a dentist local to Becky and Beverly. Though the operation was necessary for the abscess, it was an incredibly difficult experience as the dental work triggered an intense episode of TN pain which was similar to when her symptoms first began. Becky had to receive nutrition from a feeding tube. She was unable to drink and began to again lose weight. When Beverly brought Becky back from the dentist, their home turned into a nightmare. Unable to bring her daughter to the doctor, the doctors conducted home visits. The responding clinician was a primary care physician who visited routinely for blood draws. On his first visit, Beverly said that she could see the shock on his face as he witnessed her daughter’s intense pain for the first time.
“He came to our house and drew blood and watched her rolling on the floor,” she recalls. “I didn’t know when it was going to be over. She was just hurting so bad.”
Shocked by the situation, the primary care physician stepped up for Becky and Beverly. He began working diligently to obtain the care she needed and assisted to develop her current medication regimen. He even would go grocery shopping for them. After six weeks of tireless work from her mother and her PCP, Becky began improving.
At time of publication, Becky is currently in remission. She enjoys going for rides in the car, eating her favorite foods, and watching fun TV shows. Cold temperatures don’t bother her as much and sometimes she is even able to each chilled food.
Because she is Becky’s primary caregiver, Beverly has to ask herself the hard questions. She considers the far future of what will happen when she was gone and who would take care of Becky when that time comes. “I do think about if something happens to me or her. I would hope and pray a lot that her father would step in if something happened to me,” she says. “We don’t have a lot of family support or friend support because they don’t understand it.
That’s just the face that they don’t understand. They shy away and it’s the truth and it’s sad. … I have to fight for everything and I have to be so tenacious to get everything done for her to make her life somewhat of a quality of life.”
Beverly became connected with the Facial Pain Research Foundation while doing research regarding her daughter’s illness. Seeing substantial research being done toward a cure provides her with hope for Becky’s future.
“I hope that she doesn’t get worse. I wish they could find a cure,” she says. “It’s never really gone. It’s always there. There are so many people suffering so bad. I’ve seen so many people commit suicide from it. It’s just really bad. Just don’t give up.”
Currently, Beverly and Becky are enjoying remission and living life to the fullest. Becky laughs more and smiles, and when she does, Beverly says it fills her heart like nothing else. The mother-daughter duo are survivors – a team getting through life together. With TN, Beverly says you never know what tomorrow might bring. To that end, one must life with perseverance as if running a marathon. And Beverly will keep cheering her daughter on all the way, no matter what.
“I just try to keep her comfortable and do things with her and make her happy and do the best I can do give her quality of life,” Beverly says. “I made a promise a long time ago for her that I would take care of her until I’m six feet under.”
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.