I’m Lisa. I have Trigeminal Neuralgia.
Trigeminal Neuralgia is one of the most painful illnesses, causing chronic, horrific pain in the face.
I grew up in NW Pennsylvania. A beautiful area full of beaches, lakes, creeks, hiking trails, all the seasons, and so much more. NW PA is also home to one of the rainiest locations in the USA and is ranked high on the snow fall list. The season changes are hard on my body, but beautiful to watch.
A perk to living in NW Pennsylvania is being within a two hour drive to Pittsburgh, PA, Cleveland, OH, and Buffalo, NY. Making it easier to travel to some amazing doctors and healthcare systems. Also convenient for concerts, day trips, and seeing touring Broadway shows.
Being Diagnosed with Trigeminal Neuralgia
I was diagnosed with Trigeminal Neuralgia (TN) in March of 2018. To simplify such a complex illness, the nerve in the right side of my face, the Trigeminal nerve, does not turn off. As a result, my face is in constant trauma and the pain doesn’t stop. At any moment, I feel some or all of the following symptoms; burning, throbbing, stinging, tingling, numbness, stabbing, teeth throbbing, tongue burning or numb, lips burning or numb, pressure, my right eye closes, etc. Since I was diagnosed, my daily pain levels are a constant 8/9/10. That’s real pain, not stubbing my toe pain (yes, that hurts too but that pain is over quickly). Over the years, Trigeminal Neuralgia has taught me a lot about who I am, how to stand up for myself, and most importantly, how I do not want to be treated.
Trigeminal Neuralgia is a hard diagnosis, it's a journey with a lot of ups and downs. I was diagnosed with Atypical Trigeminal Neuralgia, also known as ATN or TN2. My TN is hard to treat. Medications do not help, minimally invasive procedures that used to work to give me relief for 6 months to a year are now failing. My MRI’s do not show a compression with the nerve in my face. I do not qualify for Microvascular Decompression surgery (MVD), which is the most common treatment for TN. I must try each day to manage my pain, keep my triggers low, and lower my stress. None of this is easy.
While Trigeminal Neuralgia has taken away so much, it’s also given me a lot. Trust me, I would love for this pain to go away. I wouldn’t wish TN on anyone. Alas, TN is here to stay and I have to deal with it. I have to accept it’s part of me and use it to my advantage. Trigeminal Neuralgia has shown me just how strong I am (even when I don’t want to be). Pain has shown me that I can still move forward and yes, I will still be taken down when I least expect it. But it’s taught me to get back up and keep fighting.
A family adventure to our local creek in 2018, a few months after my diagnosis. Lots of smiles, giggles, and treasures. I miss these days!
This photo was taken just before my Trigeminal Neuralgia diagnosis in 2018. At this time, I could still smile, laugh, and look completely normal.
Mourning My Former Self
Recently, I learned that I was mourning the person I used to be. My personal and professional accomplishments are altered. My family life, relationships with friends, being able to go on an adventure at any moment, and being able to smile and laugh with ease are now memories. The memories will always be there but I realize I cannot be that person anymore. As much as I try to get back to her, I won’t be able to. She’s still part of me and helps me every day, but I’ve realized I have to stop mourning the loss and figure out how to move on.
Chronic pain is highly isolating, I am lucky to have people in my life that are understanding and compassionate. I’ve lost people along the way and will always encounter those that are incapable of understanding. I am ok with that, it doesn’t bother me anymore. Those aren’t the right people, they aren’t able to offer the support needed. I wish them the best and move on. I cannot mourn them, the problem is with them, not me.
Why Share My Diagnosis Now
The creation of Talking Less will help keep me centered, help me stay focused on the path forward, and will serve as a reminder of the journey and just how far I’ve come. When you’re in horrific pain it’s so hard to remember, you focus on the pain and tell yourself you aren’t better. It’s taken my husband to always remind me that not too long ago you couldn’t get out of bed or talk. It’s hard to remember to focus on the future path and stop focusing on the injustices Trigeminal Neuralgia brings from a personal and medical perspective.
I hope you find my story helpful. I hope it inspires you to keep fighting. I hope it helps others understand just how hard Trigeminal Neuralgia is, that we are not making it up, and we can’t just turn off the pain or stop complaining.
If you find yourself scared, isolated, or just need someone who understands, let me help you. Use my story to pull yourself back up and keep moving forward. Together, we win over Trigeminal Neuralgia. We are more than a diagnosis.
Pain attack in March 2025. Chris is always there to help, making me feel like I’m not alone or completely isolated by pain.
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