Rachel Muralles, 29 years

The hardest part was keeping the pain unnoticeable from my 2 and 4 year-old sons. I stayed home with them and my days were repeatedly interrupted with pain episodes.

A significant day was November 4, 2005. I felt a pop on my right side of the face and immediately felt a burning, tingling sensation radiating on my right cheek. I had never experienced an attack like that or thereafter. I believe this is when my “pre-TN” symptoms developed to more “classic TN.” After that weird attack, my pain changed again. Eating, laughing, talking and putting on makeup triggered sharp jabs of pain.

The neurologist asked many questions about my lifestyle. He immediately assessed me as a stressed out stay-at-home mother. I did notice stress aggravated the pain but in my heart, I knew it was not the cause. As he started to write the prescription for antidepressants I immediately refused. He became aggressive and uncooperative because I questioned his authority. He scrutinized my body language and my mother’s medical history trying to prove that it was subconscious stress.  He sent me home without any kind of pain control plan, orders to get an MRI and a print out of my diagnosis from a medical website– Atypical Facial Pain.

I immediately started my research! Atypical facial pain was sometimes misdiagnosed for Trigeminal Neuralgia. Just the name scared me! After I read the symptoms, I knew that is what I had. For 9 days I left numerous messages and no return calls from the doctor. I was desperate for medication now. I could no longer bear the pain. After 12 days, the doctor finally calls me back. Those days were sheer agony due to escalating pain and frustration that my only “hope” was unreachable. I had learned Tegrotal was the first line of treatment and many times used to finish the diagnosis of TN. When I asked for Tegrotal, he refused. He said I was TOO YOUNG to have TN. He prescribed another medication that did not help.

I needed to take my healthcare into my own hands and find a knowledgeable neurologist that could listen and make a proper diagnosis and hopefully end my pain.

On November 30, 2005 at 28 years of age, I was diagnosed with TN. I was immediately given Tegrotal. I noticed immediate results and the side effects. Being in a cloudy and slow mental state made it difficult in caring for 2 active boys. Sadly, as soon as the medicine would eliminate the pain, the pain would break through after a few days. My doctor continued to increase my dosage. A day didn’t pass without multiple episodes even on medication.

My babies learned to just stay quiet as I held my face crying or ended up in a ball on the floor. My patience grew very thin while in pain. Amazingly, they knew to give mama space and keep busy playing on bad days. I felt like the world’s most horrible mother!

I began to eat alone. I was afraid I would ruin mealtime if I ate with my family. I didn’t leave the house. I refused invitations to get together with friends. I was afraid of attacks and how to explain them to people. I learned to chew only on my left side of my face. Just the thought of eating caused anxiety. I was very stiff when I spoke trying not to move my mouth and trigger the pains. I would cringe if someone got near my chin to hug or kiss me. I couldn’t enjoy life with this unpredictable pain nor live on such strong medication for the rest of my life.  One morning I decided to count how many episodes of pain I had. In four hours, I counted 30 episodes.

Thanks to the knowledge and support of my neurologist and neurosurgeon, Drs. Charles Crinnian and Andrew Shetter in Arizona, I pursued the most aggressive form of treatment - brain surgery. On March 8, 2006, I had micro-vascular decompression. It was a difficult and long recovery for me. However, I have been 100% pain-free for 11 months! Any discomfort I felt in recovery was well worth it.  Every day I am thankful that I have my life back.  

Having TN is like a big mind-game and an emotional roller coaster ride. Even after my experience, it took a long time to erase the words of that first neurologist. I am not sure if the anxiety of TN returning ever leaves completely. But you sure learn to enjoy every pain-free minute!

You are not alone and there is hope! So many lessons are learned on this journey. My faith gave me endurance and I was blessed with the support of my husband and parents, the experiences from past TN patients and TNA expertise. Thanks to them, my suffering time was short compared to others. There is nothing like someone who actually understands what you are going through to ease the pain and frustration of this horrible disorder. So on those days you feel like you just can’t bear it any longer, call someone who understands TN. Believe me, they want to help!