Trigeminal neuralgia is a rare neurological disorder of the fifth cranial nerve, also known as the trigeminal nerve. According to NORD, "The disorder is sometimes broken down into type 1 and type 2. TN type 1 (TN1) is characterized by attacks of intense, stabbing pain affecting the mouth, cheek, nose, and/or other areas on one side of the face. TN type 2 (TN2) is characterized by less intense pain, but a constant dull aching or burning pain. Both types of pain can occur in the same individual, even at the same time. In some cases, the pain can be excruciating and incapacitating. If untreated, TN can have a profound effect on a person’s quality of life."
Until 2014, I didn't know that Trigeminal Neuralgia existed (or most other rare diseases for that matter). After visiting a local dentist multiple times but failing to obtain any pain relief, the dentist suggested that Marcus look into the disease. When I returned home and Googled the term, I legitimately thought that the websites hits were fake. I remember thinking to myself, "There is no way there is a real disease so morbidly known as 'The Suicide Disease.'" Further research led to more incredulity as I learned that Trigeminal Neuralgia most often affects women, especially those of middle age. "There is no way Marcus has this "'disease,'" I continued to lie to myself. Yet, deep down, I knew the problem was much more significant than, "It's probably dry socket from the (unnecessary) wisdom tooth extraction" or "He's probably just in pain from the multiple (unnecessary) root canals." I did not want to accept the reality of our situation, but I could not deny his inability to eat, drink, smile, brush his teeth, or kiss without wincing. Most importantly, I could not turn a blind eye to the moments I watched him double over, writhing and crying in pain.
Here we are, five years later, still working as a team to combat the effects of this rare neurological disorder. Maybe you are like I was in 2014 and can barely pronounce "Trigeminal Neuralgia." Maybe you're like most people who, to no fault of their own, cannot grasp the gruesome facts of this facial pain disorder. Maybe you're like some dentists and doctors we have met along the way who don't fully believe that Trigeminal Neuralgia is real, or, because of the lack of research, cannot provide a quick, accurate diagnosis or better treatment options. But maybe, just maybe, after reading this blog, you will walk away more educated and better able to understand how Trigeminal Neuralgia affects approximately 15,000 people per year.
Every year on October 7, we celebrate Trigeminal Neuralgia Awareness Day, and we LIGHT UP TEAL 4 TN as we seek to bring more awareness to this rare disease and the warriors who suffer from it. Today, Marcus will share some of his story, and a few other TN Warriors that I have met along the way, ones that I look up to with so much inspiration and love, will give you some insight into their battles with TN.
You can support those battling Trigeminal Neuralgia and all other rare diseases by signing up for our SEE RARE RUN virtual race or donating to our organization. Happy running, friends, and hang in there, TN warriors!
The first time I noticed something wrong was on Halloween. I was working at a hospital in Salisbury, NC and happened to get floated to the Emergency Department to help. Being Halloween, there was a candy bowl in the break room. That’s the first time I noticed this uncomfortable, electric jolting sensation on the left side of my face...trying to eat a Starburst. Enter what felt like an incredibly lengthy and scary period of time in which I would repeatedly visit dental offices and pray that this root canal or this wisdom tooth removal would fix this ever-intensifying pain. At this point in my journey, Trigeminal Neuralgia was, for me, exponentially getting worse. I would have outbursts of electrical, stabbing pain that would leave me drooling on the floor. Just as problematic was the inability to talk or eat during flare ups, as the slightest movements of my mouth would set it off. I remember having a coworker in the ICU where I worked call my wife to come pick me up in the middle of a shift. Jane took me the ED, where I was offered Morphine, but I instead took Toradol, and left with a big monetary bill and zero answers on what to do next.
I hate talking about my experience with Trigeminal Neuralgia. The pain can be so severe that I’m afraid people will think I’m over exaggerating. It’s also not easy to explain to people. I agreed to write this blog post in hopes of sharing that experience of being incapacitated and feeling like you have nowhere else to turn. I hate how gloomy this is reading already, but I want to share the importance of raising awareness for rare disease based on my own personal experience. I had 3 root canals and 2 wisdom teeth removed that ultimately did nothing for me. I saw a physician and a nurse practitioner in an ED who advised going back to the dentists or endodontist I’d already been seeing. Over the course of months, I felt like this cycle of pain and unanswered questions asked in desperation would never end. Thank God for a referral to a new endodontist in Concord, NC, who finally told me, “You need to see a Neurologist”. At long last, we were on the right path to some answers.
Over the past five years, the remission cycles have shortened, the pain has increased exponetially, the visits to specialists have been more frequent, and the disease's impact on my daily life has gotten significantly worse. I am currently debating whether or not to undergo Microvascular Decompression Surgery but trying to stay hopeful in the meantime, until there is a cure.
My name is Emily and I'm 29 years old. My journey with TN came in the midst of another health journey - one of post concussion and chronic migraine problems - and has been a bit atypical. In March 2017, while undergoing treatments for post concussion headaches, I had “a flip just switched” moment when I noticed what felt like a bad toothache that, within 24 hours, became the most severe and excruciating pain I’ve ever felt all over the right side of my face. A few days later I was diagnosed with Trigeminal Neuralgia (TN). To make a long story short, it was eventually discovered that there were some very key dental issues underlying my pain right near the TN - possibly causing or augmenting the neuralgia. There were a series of several infections in my jaw bone that caused jaw bone loss along one branch of the trigeminal nerve - irritating the nerve, and leaving the nervous system and body exposed to inflammation.
Currently, I am living in San Francisco, continuing to heal my neuralgia and migraines as my full time job. Having TN has definitely taken a lot from me and often created a profound sense of loss, but it has also taught me so much. About pain and handling pain, the mental skills required for recovery, myself, and so much more. Moreover, given the somewhat unique nature of my case, I've also learned how common it is with TN diagnoses for dentists and neurologists to go back and forth, and each have differing opinions. I really empathize so much with all the people whose TN cases felt like they took forever to get to the bottom of or find a treatment. Having people to connect with and talk to who can relate has maybe the most powerful treatment yet - so I am very grateful for this community!
Trigeminal Neuralgia: Two words that most people can’t pronounce and don’t know but have greatly affected my life for almost 6 1/2 years now. I think when we first get the pain, we remember it well. Fast forward to year six and all the years in between and, wow, what an impact TN has made. I have been very thankful to have a primary doctor that knew about TN and knew about the medication and treatments, could refer me to pain management, and, when ready, a neurologist. I have tried many medications to control my TN pain. I have become allergic or sensitive to most. Right now, I am on Topirmate 100 mg/twice a day and recently started on 25 mg of Amitriptyline. I also have Tylenol with Codeine, for, as my doctor put it, “days where you have pain above a 7.” I started adding Amitripyline this past winter when the pain was so bad I was curled up on my chair in the dark, not getting any sleep and praying for any relief of the pain. My biggest trigger has always been the weather. Seasonal changes are tough! My doctor told me I am progressing. I had just recently given up the gym, which I loved going to, especially going to my favorite class Zumba. I still walk and love walking the metro parks. I won’t let TN take that away. TN has affected my friendships along the way. I have them but don’t get asked out like I used to. Friends don’t understand that an attack can come on just like that.
Noise has also become a trigger. There are some foods now too. I have close relatives that say they understand, but they really don’t...if only they saw a full-blown attack. Sadly, some don’t believe me. I have had a nerve block with two needles that failed. I ran a race for TN and won first place. I am proud of that. I don’t know what the future holds. I am a preschool teacher, and it is getting harder to teach. I often say that TN is like a toddler. TN doesn’t like to follow rules, is all into itself, and throws temper tantrums! One other thing I have learned is that all of those affected with TN are strong warriors! I am so thankful for all the support I have gained through the online TN websites! They are wonderful! As I am finishing up, I feel a cold electric shock building on my cheek and in my jaw. Oh well, what are you going to do...#adayinthifeofatnwarrior