Hi, my name is Serena Huffine, and I'm 28 years old and live in the south-eastern United States. I had my first trigeminal neuralgia attack on September 1st of 2021. I was so scared in those first moments of having TN. The pain was so bad that I thought I had a brain tumor. Prior to my first attack, I had never heard of trigeminal neuralgia. I did a lot of research and began my tiresome journey of trying to convince doctors that I had this condition.
I went to the ER probably 10 times total before I received a diagnosis. I was dismissed by at least four medical professionals who claimed that I didn't have TN. However, I knew I did, simply because my symptoms were spot on and I knew I wasn't having migraines. Because I have bilateral TN on both sides of my face, a lot of those doctors didn't want to believe it, because having TN on both sides of your face is rarer than having it on one. Finally, in November of 2023, I was officially diagnosed after I was admitted to the hospital from the ER. Then in June of 2024, I went to the ER again and was admitted to the hospital once more. Not only did a neurologist back up the fact that I have bilateral trigeminal neuralgia, he also diagnosed me with occipital neuralgia as well.
My family and I believe my TN and ON were caused by overplaying my flute for a symphony orchestra audition that I had - and that audition was one week prior to my first TN attack in 2021. I found a medical report online that spoke of three accounts of TN caused by playing a wind instrument. I believe I am the fourth.
Currently, I am taking Gabapentin and Baclofen for my TN and ON. However, I am considering having nerve blocks in the future. I highly doubt that I would ever want to seek surgical treatment for my TN because of the risks involved. During my fight to receive a diagnosis, my father has spent thousands of dollars on me. We still owe several more thousand to doctors and hospitals for my ER visits. Being gaslit and dismissed by doctors is very scary and is something I wouldn't wish on anyone. I am currently an advocate for invisible diseases like trigeminal neuralgia on Instagram. My username is tealstargazer - because teal is the color of the ribbons representing trigeminal neuralgia and occipital neuralgia. Thank you so much for reading about my medical journey!
Check out Serena's Instagram @tealstargazer where she raises awareness about trigeminal and occipital neuralgia!
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