What Living with Trigeminal Neuralgia Taught Me (And How It May Help You)

By Rene Morales

In February 2018, two days after my fiftieth birthday, I began to feel a tingling and burning sensation on the right side of my forehead. Over the next few days, the tingling grew into electric shocks whenever I touched that area of my face. Concerned, I saw my doctor who immediately sent me to radiology for an MRI of my brain. Two days later, my doctor informed me of the results of the MRI: Trigeminal Neuralgia, a rare and chronic pain condition. My Trigeminal Nerve is in contact with an artery and carries sensation from my face to my brain. The pain associated with this disorder is considered by many to be the worst pain a human can endure. In the past, it was commonly referred to as the “Suicide Disease” because the intense pain and resulting high rates of depression lead many to end their lives.

Upon this diagnosis, I quickly became depressed and isolated myself away from my family. My wife and children watched helplessly as I suffered. I perceived their looks as pity which caused me to feel weak, a false reality I created in my head.

Already struggling with anxiety and negative thinking, I battled with the thoughts now racing through my mind. How would I get through this? What would this do to my marriage? Now filled with fear, I envisioned only agonizing pain and loneliness. I questioned if I would ever find comfort from anyone or anything again, leading me to worst-case scenarios where I would ultimately want to end my life. Unable to accept my new normal, I entered the stages of grief due to the loss of the person I once was, skipping over denial and straight to anger and depression. 

The terrible pain of this disorder was like an electrical storm raging through my head. Ominous clouds rolling in, hurricane-force winds causing mass destruction, sideways rain and powerful bolts of lightning reverberating within my head and shooting down my body whenever I spoke, touched my forehead, brushed my teeth, showered, or even smiled.

 I became concerned for my future. I thought I would no longer be able to work, support my family, and I would ultimately become a burden to those I loved. I began to lose hope. Each painful shock made me angrier. I turned to food and alcohol for comfort and gained over twenty pounds in two months. Whenever possible, I retreated to my bedroom and began a life of isolation, rarely coming out to engage with anyone. As the days turned into weeks and weeks turned to months, I became more of a roommate than a husband to the love of my life.  My negative reactions to the disorder drove me deeper into depression, severely affecting my marriage and my mental health. My wife struggled with how to deal with me. She quit her well-paid position at a local hospital to start her own private practice as a mental health counselor so she could care for me and ensure I had the support I needed. She did everything she could to be there for me, but rather than accept her influences, I wallowed in self-pity and allowed my situation to get the better of me regardless of her actions.  

My negative responses placed a wedge between my family and me. After months of isolation and self-destructive behavior, my relationship with my wife was severely strained. We were both unhappy with the person I had become and I was adrift in a sea of depression. It was at that low point that I realized I no longer wanted the life I had created. Something had to change. I had to choose to either sink further into the abyss of depression or pull myself out and find my way back to who I was prior to my diagnosis. In order to bring myself back to life, I had to focus on positive thinking and radical acceptance of my situation. While I did not have to like my situation, I had to accept that I had this disorder and find ways to live my best life regardless of my situation. I began to change my outlook on life. Instead of feeling sorry for myself, I found peace in the knowledge that my situation could be so much worse than it was. Rather than being diagnosed with Trigeminal Neuralgia, I could have been diagnosed with inoperable stage four cancer and had only months to live. I needed to adopt a better perspective, embrace all the positive aspects in my life such as the love and support offered by my family. Lastly, I had to come to terms with my diagnosis, and not view it as the end of life as I knew it. 

One of the first steps I took towards recovery was to learn and understand everything I could about Trigeminal Neuralgia, including treatments, both traditional and non-traditional. I was prescribed several medications, all of which caused terrible side effects such as dizziness, fatigue, nausea, muscle pain, and stuttering. Due to these side effects, I began to experiment with cannabidiol (CBD) oil, a product derived from cannabis and hemp, which was used as an anti-seizure medication and a neuroprotective. The first form of CBD I tried was a paste derived from cannabis that tasted terrible. After several months without relief, I moved onto CBD oil derived from hemp. This CBD oil was infused with coconut oil and naturally flavored with orange peel. It tasted tropical and sweet and a thousand times better than the cannabis-based paste. Within two weeks of starting this treatment I was having fewer episodes, and the pain was less severe. Within two months, I no longer had episodes of pain and began to feel like myself prior to the diagnosis. I was overjoyed by this discovery and believed I had turned an important corner regarding treatment.

 Now pain free, I promised myself to make time for the things I always wanted to do but never did. I had been given a second chance at life, and I had to make the most of this opportunity. I resumed the activities I loved such as competitive storytelling and singing karaoke and no longer took for granted the simple pleasures of smiling or having a good laugh. I savored each day believing that perhaps I was cured or possibly misdiagnosed; however, I soon discovered the reason the pain had subsided was due to a period of remission, not from any method of treatment.

During this six-month period of remission, my neurologist informed me that some people experience remission ranging from a month to two years. There is no explanation for why these periods of remission happen or what triggers the return. Navigating through these ups and downs is extremely challenging, because each time the pain returns, I am affected differently; the pain is either more intense or it affects a different part of my face. In addition to struggling with this intense pain, the mental struggle of facing the reality that my much-enjoyed break from the disorder has ended crushes my hopes for a sustained period of relief.

 I am very open regarding my struggle with Trigeminal Neuralgia, and have shared my perspectives through a variety of platforms. I’m often asked how I manage my life with such uncertainty and pain. The only words that come to mind are “You just have to.” While I never chose to have this disorder, how I react to it and how I choose to live my life are up to me. It took years for me to get to where I am, and if I can offer any advice it would be this: radically accept your situation and do not allow your illness to take away your very soul and everything that makes you who you are. In the two and a half years since my diagnosis, I have learned a lot about myself. I have endured the darkest pits of depression and savored the highest heights of personal and professional achievement. I have become closer to my family and learned the value of time, relationships, and self-acceptance. I did not learn these lessons on my own. I know that the life I have today would not be possible without the loving support of my wife, children, friends, and co-workers.

 I still have days where I struggle -- days filled with extreme pain and constant concern for my future. I’ve learned to accept those bad days and allow myself that time because no one is perfect. I give myself those moments, and when I’m done, I pick myself up, dust myself off, and do what I need to do to see myself through the days, weeks, and months that stand before me. In doing so, I believe I set a positive example for others. I show that one can thrive while living with an incurable and painful disorder, and that being diagnosed with such a condition is not the end of the world. My life is challenging and filled with uncertainty, but that has not stopped me from being who I am and growing into who I want to be.

Rene Morales is a retired Coast Guard Chief Warrant Officer currently working for the Washington State Department of Veterans Affairs. When he isn't busy serving those who served, he spends his time writing short stories, is a competitive storyteller and musician.

Rene is one of twenty individuals featured in the upcoming documentary film Unfixed by Kimberly Warner. Unfixed follows these individuals that are in various stages of learning to thrive with extreme, chronic, incurable conditions. You can learn more about Unfixed at www.unfixedfilm.com.