6.2  Facial Pain Will Never Steal My Smile

By Laura Launderville (USA)

I come from a small rural town in the middle of nowhere, Virginia. Other small towns littered with farming fields surround me. Corn, cotton, peanuts, and soybean fields are close to my heart. When I see them, I instantly feel at home. I love watching the wind roll over the fields like ocean waves. Some of my fondest memories are walking down backroads and feeling the wind come off the fields and hit me, leaving my hair a windblown mess. I never expected to have those memories splattered with the worst pain I have ever experienced. I never thought the wind could hurt until it did.

Trigeminal neuralgia (TN) interrupted my life, making an unannounced, unnamed entrance when I was 17 years old. I had no idea then how painful life would become—and how much of an impact this pain would have.

I had dental work done—just a few fillings in my front teeth. A month or so later, a strange pain surfaced. I thought it was of dental origin, so I returned to my family dentist. He was confused but thought some of my teeth might be impacted. And so, the extractions started. The pain was beyond anything I can explain. The prescribed  hydrocodone did not even approach, let alone reduce, the pain. My dentist was utterly confused when I showed back up after the first extraction with the same pain. I knew something was wrong. That strange pain was excruciating. It was somewhere lodged in the back of my jaw and in the right side of my mouth. I could never fully pinpoint the pain for my dentist. So, when I showed up again in pain, he decided to pull another tooth, even though there was clearly nothing wrong with it.

Once again, the pain was there. It was stronger than the pain from a recent extraction. When I returned yet again, the dentist wanted to do another procedure, but he admitted that he did not know what was wrong. I knew deep down that this was not a dental issue. I stubbornly refused and decided to just deal with the pain.

Unfortunately, pain was not allowed to be shown in the world in which I grew up. Perfection was demanded; sickness was perceived as amoral and as a character failing. You could not really be “that sick” or in “that much pain.” You couldn’t be in pain at all. Being within this world taught me to hide my pain. I was forced to neglect my needs. Survival mode kicked in and thrust me forward.

I lived in survival mode for years, continuously slipping in and out of remissions. Terrified as my symptoms worsened, my facial pain spread until it took up residence in all three branches of the right side of my face. I was left at its mercy.

I finally found a bit of courage and reached out for help from my small-town primary care doctor. The doctor said to buy a night guard and the pain would go away. The doctor advised that I go to the dentist even though I shared my dental experiences. I was shamed for not going back. I was once again defeated, feeling unseen and unheard. I was brushed aside by doctors when it had taken so much courage for me to ask for help. I slipped back into survival mode.

My pain levels fluctuated, and I continued to adapt. I avoided things that would trigger my pain. I tried anything that would reduce the pain: soft and liquid diets, limited talking and laughing, staying out of the wind, and not touching my face. I even stopped wearing makeup.

I often wished that I would find what was ailing me, but whenever I reached out for answers, I was left feeling even more alone and scared. I continued to do what I could without the resources I needed.

I cannot grasp or put into words the fear, anxiety, and depression that accompany the experience of a rare condition such as TN. I would wake up to a new day and a new symptom. I have very emotional memories of the progression of my facial pain. TN slowly and steadily chipped away at my face and, with it, my life. My early 20s slipped away from me; each day was spent fighting the unnamed monster that had taken over my life.

The first breakthrough came from a library book. My twin sister had picked up a book about the human brain and was diving into it. Excitedly, she came over to me, book in hand, pointed to the diagram on the page, and said, “Laura, I think this is where your pain is!” I took a look and read the words “trigeminal nerve.” The more I read, the more I became certain that this, indeed, was where my pain was located. That was the first time that I experienced hope. With that first breakthrough as a clue, I eagerly searched online for information. I finally stumbled across the term “trigeminal neuralgia.” I was struck with fear with what I read. Then, I was reminded that I had survived this long; I deserved to name the pain that so negatively impacted my life. My next step was finding support groups online. The moment I read people’s stories and symptoms, I knew this was what I had. I knew I had TN. And for the very first time, I knew I wasn’t alone. It was through these support groups that I was pointed toward treatment and reassured that I was strong and supported.

Unfortunately, by the time I had found these answers, I was about to turn 26 years old and I was in a rush to see a neurologist and get my diagnosis. I was desperate for some relief! My father pulled some strings, and I was able to make an appointment with his neurologist on the pretense of a migraine. I remember sitting on the exam table as I described my symptoms to the neurologist. His mouth dropped open, and as he pointed to my father, he said, “TN is a condition that people your age get, not a 17-year-old girl.” He was in shock. I was not.

I knew that my pain was real, and I was determined to be heard, believed, and diagnosed. Two days before Christmas, I had an MRI scan. My neurologist thought there was a good chance that I had multiple sclerosis (MS) and told me to prepare for that or a brain tumor. This all terrified me, but I pushed through, knowing that, regardless of the diagnosis, I was close to getting answers. I remember going into the first MRI machine. The technician was kind and reassured me that I was in good hands. I waited over the Christmas and New Year’s holidays until I got the results. With my twin sister holding my hand, the nurse told me I did not have MS and it was not a brain tumor. It was TN. The moment I got off the phone, my twin sister and I hugged each other, crying and jumping up and down excitedly. Not because of the diagnosis, but because I had my diagnosis. After nearly a decade, I had my official diagnosis. I cried tears of relief.

I would later find out that the radiologist who read my scans was the first person to fight for me. He argued with my neurologist, who still did not believe that I could have TN at my age. I will forever be grateful for that radiologist. He will never know how much getting an accurate diagnosis helped me or how much it meant to have someone advocate for me.

It took nearly 2 years before I found a treatment that helped. The world was shut down because of COVID, and that added to the extra wait time to get medical insurance and see a new neurologist. During that time, I experienced the worst flare-ups of my life. I remember barely being able to talk to the receptionist scheduling my appointment.

When she told me it would be a year’s wait, I broke down on the phone, started to cry, and begged. I told her that I had TN and no medication. She found me an appointment within the next 2 months. I was lucky to find a neurology team that not only understood TN but also treated it. Once again, hope grew.

It took some trial and error, but at last, I found medication that relieved my pain. I had a 2-year remission. I had a few small flare-ups of pain, but adjusting the medication led me to a pain-free period. Could that change? Yes. I know that, any day, that could change. That is the reality of having something like TN. I try to live in the present. And I know that, whatever comes, I will get through it, because I already have.

TN took a lot from me; I won’t lie about that. Honesty is important when sharing my TN journey. But I have gained from such a horrendous condition, too. TN brought not only pain, but also a community. I made wonderful friendships. I found an empathy for those in chronic pain. It is one thing for someone to say “I understand”; it’s quite another when you know that the person saying those words really does understand. This condition has given me a passion to help others with facial pain and chronic illness. It has shown me a tenacity that I never knew I had. The truth is, TN has forever changed me as a person. And although I do not believe I needed to have something as painful and horrible as facial pain, with that pain has also come beautiful growth.

Fast forward to today and I never could have imagined I would be where I am now. For so long, all of life was about working through one episode of pain at a time. It was breathing through one attack and bracing for the next. It was bleakly looking at the future, and with it, the fear of never experiencing wonderful things because of my facial pain. Then, there was the fear of putting myself out there to experience wonderful things but being terrified of how to do so through the pain. I believed deeply that TN would steal joy from me. Steal happiness. Steal more time from me. Steal my very life. But I learned that pain and joy can coexist. Happiness is truly homemade. Facial pain did not have to be the deciding factor on whether I experienced wonderful things.

One of the things I genuinely wanted was a loving relationship despite TN. That took a lot of courage for me. And vulnerability. But it was worth it. I have experienced the vulnerability of putting myself in the dating world. And I have experienced love. I know the gentleness and compassion of a partner who still sees me as me and views my TN and health as just a part of me; not the whole of me. I am making a home with the love of my life and our two kitties, our little Luna and silly Charlotte, whose personalities are as different as their sizes. I love the life that I am building.

I love that, out of experiencing a unique pain, I have been able to give back to the empowering, wonderful, and strong community that welcomed me with open arms. This community breathed life into me when I so desperately needed it. It instilled in me the message that I was not as alone as I felt. It is a community filled with people who not only understand but genuinely care. I am honored that I belong to this community, I am honored to share my story, and I am honored to volunteer with the Facial Pain Association (FPA) and the Young Patients Committee (YPC) in the USA.

I am grateful each day for my father, my twin sister, my other sisters, and my brother—the people who always believed that my pain was real. They have fought hard for me and have held me through TN episodes. My twin sister, especially, has been by my side on the darkest days. The darkness that comes with chronic pain often felt like it would swallow me up. I am grateful for my boyfriend, who has gently held me during the days when chronic illness overwhelmed me. He has reminded me of my strength and has walked hand-in-hand with me on my journey. My loved ones have been my rock; they have not only loved me, but also believed in me and championed me. I am blessed.

Over time, and with continuous healing, I am showing the 17-year-old me, who so desperately needed her pain to be seen and validated, that her pain was, indeed, real. And regardless of what others said, being bullied and not having been believed back then, she is seen now. And she is loved.

I have come a long way. And facial pain did not stop me. But most of all, it will never steal the smile within me.