My Experience With Trigeminal Neuralgia

I still remember the moment I realized something was amiss. A sharp, electric pain shot through my face when I twitched my nose after touching my face. That was my first encounter with trigeminal neuralgia, a chronic pain condition affecting the nerve responsible for sensation in the face.

As I learn to live with this condition, I believe it’s crucial to educate others about what trigeminal neuralgia is. It’s not just a ‘face ache’ as some might dismissively call it; it’s a disorder that can hijack your life with no warning. My early symptoms included sporadic jolts of pain triggered by everyday activities like eating, speaking, and even touching my face. But it went beyond that; the unpredictability of the pain was perhaps the most unsettling aspect.

Getting my diagnosis wasn’t straightforward. I had been diagnosed earlier, but the symptoms went away, and I felt nothing for more than a year. When the electric shocks came back on the right side of my face, it came back with a vengeance. After many appointments and tests, the conclusion finally brought both relief and a heavy burden of reality. There are myths around this condition — that it’s not severe or merely psychological. I hope to dispel such myths by sharing my reality. Trigeminal neuralgia is more than just facial pain; it affects each sufferer uniquely and profoundly, often with crippling consequences.

Witnessing firsthand the emotional and psychological impact of trigeminal neuralgia has shown me the hidden battles individuals with chronic pain endure. It’s a reminder that what’s invisible to the eye can still exert a tremendous force on a person’s life. With this article, I’m choosing to speak up for myself and the many who are silently struggling, hoping to foster understanding and empathy within our communities.

Altered Realities: Adapting to Life with Trigeminal Neuralgia

When I was diagnosed with trigeminal neuralgia, I didn’t realize it would mean reimagining my entire lifestyle. My routines and the simple daily activities I once took for granted required adjustments to accommodate this new, relentless companion: pain.

For me, interactions became a balancing act. Social gatherings, once a source of joy, turned into a series of strategic moves to avoid triggering an episode. Professional commitments had to be weighed carefully against the risk of a flare-up. Where I enjoyed many of my favorite foods, I now consume softer, easier-to-swallow foods so I don’t risk pain episodes.

Prioritizing self-care took on a new level of importance. I began to understand how crucial it was to have a network of friends and family who could step in when the pain became too overwhelming to face alone.

Finding relief sometimes seemed like a distant dream, yet it was in the smallest of daily wins that I found my strength. I embraced a new pace of life, allowing myself moments to rest and recover, and learned that patience, practice, and perseverance were my best allies in coping with trigeminal neuralgia.

Seeking Solace: Treatments and Personal Insights

In my journey with trigeminal neuralgia, treating the condition has been as much about persistence as it has been about medicine. I’ve explored a spectrum of options, from medications that target nerve pain to surgical interventions designed to provide long-term relief. The trial and error were daunting, but I gained new insights into managing my health with each attempt.

Right now, my primary doctor has prescribed Gabapentin, an anticonvulsant medication, to control my pain. I am off work until I see a neurologist who will assist me with long-term treatment of my condition. As usual, I was resistant to using medication as I do take medications to control high blood pressure and diabetes. However, right now, this is my only means of coping with this intolerable condition.

I feel it’s important to talk about trigeminal neuralgia openly because awareness can breed understanding and support. When conditions are invisible, like so many neurological disorders are, sharing experiences can illuminate struggles that might otherwise go unrecognized. By speaking out, I’m contributing to a larger dialogue that could lead to more research and better treatments in the future.

The solidarity I’ve found through connecting with others who struggle with trigeminal neuralgia has been invaluable. Online communities and support groups have offered a platform to exchange practical advice, find comfort, and share victories, no matter how small. This condition is a part of my life, but it doesn’t define me. I hope that by sharing my story, I can foster connection and maybe even offer a beacon of hope to someone else facing this challenging path.

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  1. Thank you for sharing your deeply personal journey with trigeminal neuralgia. Your detailed account of living with this painful condition is both enlightening and moving. It’s crucial for such experiences to be shared to increase understanding and support for those affected. Your strength in facing this challenge is truly inspiring

  2. Dear Eldridge, 

    Thank you for your vulnerability and your honesty in sharing your experience with this disease. I am very sorry that you have had to go through this, and I applaud your courage when writing this article. I am sure that this is bringing much attention to Trigeminal Neuralgia because I personally have never heard of it. I hope that VERY soon your physician can help your pain subside. Not to sound insensitive but I wonder if there is a way to numb the specific nerve like Botox numbs certain nerves to help reduce migraines in some people. Thank you again for sharing this and I look forward to hearing how everything is going for you. I’ll be praying for you Eldridge.

    Take Care,


    1. Hi Stacey,

      Right now, I am on nerve pain blockers and additional pain medicines to manage that are not working as well. I am going back to the neurologist (appointments are months apart so I can only guess these doctors are booked solid) to explore a surgical solution as it is impossible to live with this excruciating pain. Thanks so much for your prayers.

  3. Hello Elridge Jones , you bravely shared your journey with trigeminal neuralgia, and you shed light on the often misunderstood condition. You  highlights the profound impact chronic pain can have on daily life, emphasizing the importance of awareness and empathy. Your resilience in navigating altered routines and seeking solace through treatments and support networks serves as an inspiration to others facing similar challenges. Your willingness to speak out fosters understanding and solidarity within the community, offering hope and encouragement to those on similar paths.Thank you for sharing.

  4. I am so sorry this happened to you, I don’t personally know what you are going through, but my hairdresser who has become a good friend to me, is going through this disease as well. She hides how much she is in pain sometimes, but I can definitely tell when she is having one of those worst moments. Getting support from the community is good advise, she finds it too and sometimes shares things on her Facebook page, so that we all remind ourselves of her struggles that aren’t always visible. Thank you for your story!

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