My name is Hunter Ashleigh Gust. I’m 11 years old and I’m in the sixth grade this year. My mom, MaryEllen, has trigeminal neuralgia. Right now, she has both typical and atypical pain. She was diagnosed in 2006; I was only 6 years old then. Over the past 5 years, I’ve learned there are some things I can do to help my Mom when she’s having a face pain attack. By working together, we’ve also found some ways I can help her prevent attacks. I’d like to tell you about what I do to help my Mom in case there are other kids my age who want to help someone with face pain.
Things I can do to try to prevent my Mom’s face pain
• We’ve learned that different kinds of vibrations can trigger a face pain attack. When I’m sitting in the back seat of the car and I put down just one window, it makes a funny sound and causes a strong vibration. If I want some fresh air, the first thing I do is ask if it’s OK. If my Mom says it is, I don’t just put down one window; I put them both down to prevent the vibration.
• Another trigger for my Mom’s face pain is cold air hitting her face. She usually has a lot more pain in the Fall and Winter. When Fall comes, I start reminding her to grab a scarf before she leaves the house. She also tries to keep one in the car and one at her office.
• I know when my Mom yells, it causes her to have electric-shock pains in her face. I try to find ways to keep her from having to yell. If I’m upstairs in my room and she’s downstairs, instead of yelling down to her and waiting for her to yell back, I try to remember to walk downstairs and talk to her face-to-face so she doesn’t have to raise her voice.
• When my Mom’s having any kind of face pain, she’s extra sensitive to sounds. I try to remember not to play music too loudly or turn the volume up too high on the TV.
• Finally, I don’t encourage or expect my Mom to eat cold things like popsicles because almost all cold stuff causes her to have face pain.
Things I can do to help my Mom when she has face pain
• Heat helps my mom when she has face pain. I can help by heating and re-heating the heat pack she puts on the area of her face where she’s having pain.
• I like to make sure my Mom has a scarf close to her. Sometimes her face gets cold, even if she’s inside. When her face feels cold, it hurts more, and it’s way more sensitive to air hitting it. Wrapping a scarf around her face helps protect it from even slight breezes.
• Sometimes the pain is so bad that she can barely move. I make sure she always has a glass of water by her so she can take her medicine when it’s time. I make sure there’s a straw in it, too, because drinking from a straw is the most comfortable way for her to drink.
• Sometimes I make her a glass of warm tea because cold things trigger even more face pain and warm things seem to help her.
• I make sure to keep the ceiling fan off so there are no breezes blowing on her face.
• When she’s having a bad attack, I try not to jump up and down and be really rowdy because it vibrates the floor and the furniture and that makes her face hurt worse.
• When her pain is really bad, she says it hurts too much to eat. I like to get her applesauce or pudding cups and encourage her to eat those because she can usually do that without chewing and causing too much pain.
–Hunter Ashleigh Gust, written in 2011 at age 11