Life with Trigeminal Neuralgia

By Crystal, Trigeminal neuralgia, United States, March 5, 2020

Crystal

My name is Crystal. I’m 23 years old, and was diagnosed with Trigeminal Neuralgia, in May of 2017. That was 4 days after my 21st birthday. I woke up and the right side of my face was numb. Immediately I thought I was having a stroke. I ran to the bathroom, to look in the mirror, and my face looked fine. I went on with my day.  While working, I went into a walk-in cooler, and got a bolt of stabbing pain through my face. The stabbing pain threw me to my knees, because how powerful it was. I’ll never forget the feeling. I went to the doctor that same day. It took a month, and 5 different doctors, to get a diagnosis. I started out with medications to help treat it, but it did nothing except give me awful side effects. One side effect landed me in the hospital, because it caused neutropenic fever. After 7 failed medications, and  poor experiences with neurologist and neurosurgeons, that were inexperienced with treating trigeminal neuralgia, specifically in young patients, I switched hospitals.

In August of 2017 I switched to Mayo Clinic health system. Switching hospitals pretty much meant starting over. I had to find a new neurologist, and eventually a neurosurgeon. At that point, my work was severally effected. I went from over 40 hours a week to under 20. I couldn’t eat, smile or talk without excruciating pain. Brushing my teeth was one of the worst things to do. I continued to try different medications. They continued to give me severe side effects. I went on to try nerve blocks. They were a temporary fix, which only lasted 3 to 4 days at a time. I was then referred to a Trigeminal neuralgia specialist, at Mayo Clinic in Rochester, Mn. They referred me to a neurosurgeon, who specializes  in microvascular decompressions. I had my microvascular decompression in February of 2018. At that point, I had lost 45 pounds in 9 months. I was only eating once or twice a week, and relying on Ensure for the rest of my meals.

I woke up from my brain surgery completely free of pain from my Trigeminal Neuralgia. As time went on, I noticed the area around my incision was very painful. It took another 18 months, 3 diagnosis, and another brain surgery to fix it. I’m now 3 months out from my last surgery,  and I’m mostly pain free, and feeling great. Trigeminal neuralgia has definitely changed my life. Through it all, martial arts was a big motivator for me. I’m a life long martial artist. That was the main thing that kept me going during my worst. At 90 pounds, and with pain in my face, over a 10, I accomplished receiving my 3rd degree black belt. Even though Trigeminal neuralgia is one of the worse things I have experienced, and will probably ever experience in my life, I wouldn’t want to change it. Over the past 2 and a half years, it has taught me so much, and showed me how strong I could really be. 

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