What I Have Learned

Hello everyone, my name is Abby, and I’m so grateful to be sharing my story with you. I am a 65-year-old woman who most days thinks that she is 35!

Thirty-five years ago, I was living in Los Angeles, enjoying life. In February, when I was 30 years old, I received a devastating phone call that my uncle died suddenly. I was very close with him, so this was the worst news. I flew back to Baltimore, where I am from, for the funeral. On the day of the funeral, there was a snow and ice storm. The wind and ice pounded me on the right side of my face, plus I was crying. It was a horrific day.

A few days later, I flew back to LA. While sitting at my desk at work, I felt this sudden, horrible pain
in my face. Of course, I thought it was tooth-related and called my dentist. Luckily, he accurately diagnosed it immediately. At the time, I had never heard of trigeminal neuralgia. My dentist referred me to a neurologist who started me on Tegretol. Luckily, I did not have to go to several doctors for a diagnosis.

Fast forward several years. I did well on Tegretol, and I did not have any major TN episodes. Once in a while, I experienced little twinges of pain. When this would happen, my go-to remedy was icing my face.

At that point, the medication helped somewhat, but not completely. Also, during this time, I had begun grinding my teeth because the stress was just too much. With the grinding as well, I was prescribed baclofen, a muscle relaxer. For emergencies only, I also took a strong pain pill.

My trigeminal neuralgia pain returned when I had my child. My son has had severe anxiety most of his life, starting at age two, and my husband and I did not know how to handle or help him. From that time until he reached junior high school was extremely difficult to manage our son’s anxiety and my excruciating facial pain, plus work. The TN pain got so bad at times, I spent many days in a dark room, staying quiet and not talking with anyone. I was taking almost the highest amount of Tegretol possible.

Several years later, I met with a neurosurgeon who suggested that I consider having a microvascular decompression. In the past, I never wanted to go that route. In fact, I had never undergone any invasive procedure to that point in my life, even when I was at my worst. I just did not want to. I had educated myself about my condition. I had read everything and knew about all of the different options. I read the book Striking Back, which was also very informative. Ultimately, I decided that I would not have an MVD to treat my trigeminal neuralgia.

My go-to resource for many years has been the FPA. I knew that I could turn to them; for me, they were the only people who knew what I was going through. Also, it was stressful for me to explain to friends and family what was going on with me. Even after all of my years dealing with this, in my experience, even the brightest people still don’t get it! I am grateful for the FPA and a community of people who have walked a mile in the same shoes as me.

Today, I live a very quiet life in Pennsylvania. I have learned after so many years that it is very important for me to keep my stress level down. If this means staying away from certain people and toxic situations, then that’s what I do. When I was younger, I had a harder time saying no to certain people, but now I am able to.

In addition, I have been meditating for many years. This, too, helps to keep me calm. Someone told me, which helped me when I was at my worst, to take deep breaths. As simple as this is, when I was having an episode, I would take my breaths and tell myself, “This too will pass.” Sometimes, I would say this several times, and it did help. I have also learned that you can be the best advocate for yourself. Educate yourself about the many options to help with your pain.

I am so grateful that I am still here after dealing with this for so many years. I control my mind when it goes into the “why me” mode. Also, I’ve done a lot of volunteer work, which takes the focus off of myself. I’ve worked, and I’ve enjoyed my life, even with the many years of having trigeminal neuralgia.

I hope that my story will give some of you hope.

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By filling out the form below, you will receive a free FPA Patient Guide and periodic updates on the management and treatment of facial pain conditions. We do not share this information with any outside sources.