I received my official TN diagnosis in the summer of seventh grade. I had already been dealing with what was assumed to be migraines since I was eight years old, though we later learned that those pains were actually TN. Still, my first big attack that got me my official diagnosis started in July, and it took until the end of the month for the doctors to figure things out and to start me on an anti-seizure medication. It was not until September that I learned how the medications and new pain would affect me in school.

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School and Trigeminal Neuralgia Medications

I won’t sugarcoat it. It was hard. I took my medications at night at that time, so that I would sleep through as many of the side effects as possible. While well-intentioned, the plan did not work as well as the doctors had hoped. The side effects would linger through the day, making me extremely drowsy through my school day. It would not be until seven or eight at night that my brain would truly wake up. It was then that I could get my homework done. What would take me three hours to complete at 4pm would take me a half hour in the evening!

This started a vicious cycle though, with me often taking naps when I got home from school, getting homework done late at night, and not getting a full night’s rest. The thing is, it didn’t matter if I got 2 hours of sleep or 12 hours of sleep – if I was within a certain time frame after taking my medications, I was exhausted, dizzy, and had difficulty thinking clearly.

This combo makes school very difficult! Classes that were once easy for me became a struggle. It was common for me to fall asleep in class, despite my best efforts to focus on the lesson. It was involuntary at times!

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Understand the Side Effects

Back in 2008, TN advocacy was not what it is today, especially for young patients. Until I was older, my parents blamed much of my newfound exhaustion on being a teenager, not realizing how strong the medications were that I was taking. They did not realize that accommodations could be made for me in school, like being given more time on tests or when taking my SATs. They knew I was struggling, but thought it was something that I’d just have to learn to deal with.

My parents are divorced, and my mom would drop me off at my dad’s house every morning before school. Since my dad did not see me as often as my mom, I don’t think he fully realized how drugged out I felt in the mornings. He assumed my newfound exhaustion was because I stayed up too late at night. I’m sure staying up to finish homework did not help, but it was my only window of thinking somewhat clearly. I treasured that time.

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School with Trigeminal Neuralgia: Best Practices

There were some things that helped me make it through school between the pain and side effects of the medications. There are some adjustments that I made that helped me to get through school.

Talk with your teachers

I learned that teachers were more likely to be understanding and make exceptions if I was the one who explained my condition to them, rather than my mom. In hindsight, I should have had a 504-plan set up, which would have made things easier. But since I did not, every year I would email my teachers with an explanation of what TN is, how it might affect me, and links to websites that contained information about TN. When I became older and created a blog, I wrote a generic letter that I now send out to my professors, which saves me (and them) a lot of time, and I have noticed that they actually read it because it is short and quickly gets my point across.

Maybe a handwritten letter that you copy each year and hand to your teachers will work best for you. Maybe setting up a time to meet with your teachers with a parent with you is what will suit you best. And by all means parents, know what accommodations may be available to your child! But TN kids – being a self-advocate means that you get to tell your story the way YOU want it to be heard. You know your needs, and you know what you want people to understand. It is hard to speak up for yourself, but it has also helped me in so many different areas of my life!

Plan your most difficult classes around your medication schedule

The beginning of my twelfth-grade year, I had calculus first thing in the morning. As I have mentioned above, this was not a good time for me. At this point, I was taking medication at night and in the morning. It was my most sleepy time of day. My teacher didn’t understand and was frustrated that I was falling asleep in her class. She thought I didn’t care. If only she realized that I was way more frustrated than she was! At the end of the first quarter, she walked around the class and showed us our grades. I got a C-. I had never scored that low before. She told me, “If you just stayed awake in class, you would do well.” I was embarrassed, frustrated, and ashamed. I remember my cheeks burning and wanting to cry, not because of the low grade, but because she made me feel guilty for something I couldn’t control.

That day, I talked to my mom about switching my math class and study hall. Originally, I had study hall at the end of the day. Since seniors were allowed to leave school early, I could leave the school after my eight-period class. However, doing well in school was a much bigger priority! We switched around my schedule, moving study hall to the morning (where I could catch some extra sleep or go into school late without missing anything), and math to the last period of the day.

Guess what? The next quarter, my grade moved to a B! And as the year progressed, my grades only got higher and higher. Was I ever an A student in math? Absolutely not! But I did so much better! Having the flexibility to change around my schedule was so important my senior year. In my early high school years, I was in a small private school that did not have this flexibility. Since everyone in the grade needed to take the same courses, I was not able to adjust my schedule. This is something to consider if you are thinking about moving to a smaller school.

Find a safe space in school

Whether it is the nurse’s office, a classroom with a supportive teacher, or the counseling office, make sure you have a place you can go where you feel understood, safe, and free to decompress. I always found this space by getting to know my teachers and sharing my story. My safe space was the library. I knew that if I was having a bad day, I could find comfort in that quiet room. I could hide in the corner and not worry about wearing the “happy mask” that I wore around school all day, when the “pain mast” was hidden underneath.

Confide in a friend

I was always very secretive about my TN, until I met a friend who had a difficult medical struggle. He had attended the other high school in our district and was bullied because he had Tourette’s syndrome. His symptoms were very severe, so much so that he had a brain surgery that was experimental for his condition, and therefore wasn’t covered by insurance. The community helped to raise funds to help pay for the surgery, and he was even featured on Good Morning America because the surgery was successful! I was part of the community service club at my school, who raised funds to donate to his surgery. He ended up coming to our high school for his senior year, and we had a little celebration meet-and-greet at the beginning of the year, where we became friends.

When I was out of school for days and weeks at a time, he was the only friend I was completely open with. I told my other friends that I had “jaw pain,” but he could say (and spell) trigeminal neuralgia. When I told him about my meds, he understood the side effects because he lived them. We would joke that we were always told at school to “say no to drugs,” but both of our medicine cabinets were full of them! When he had a seizure at school one day, I remember texting him all night, reassuring him that the bullying that had happened in his last school would not happen at this one. When I would miss school, he would send me daily texts letting me know what I missed and cheering me up.

I know that I was lucky to have found a friend who really, truly understood. But looking back, I should have been more open with all of my friends. I should have told them ways that they could be there for me. I wouldn’t have had to hide my pain or sneak my medications because I was embarrassed and didn’t want to go into the details. Not every friend is going to be great. Some people just don’t know how to be there for you in a difficult situation. But there are some that can and will. You just have to give them the chance.

Join a club

This may not be an option for everyone, but knowing that I could help out in drama club or volunteer with “Interact” on the weekends gave me something to look forward to when school was a struggle. It is also where I made some great friends. Doing theatre was hard, because when I would miss school, rehearsals would still continue. I remember my mom sneaking me in through a side door, since you weren’t supposed to go to afterschool activities if you didn’t make it to school (my mom is totally cool, and realized that my circumstances were not the same as kids just trying to get out of class). Find something that interests you and go for it!

Never be embarrassed to go for extra help

I went to extra help whenever it was available and I was well enough to go. Was it fun? No. But it did more than helping me prepare for a test. It showed my teachers that I cared, and when it came time for grading, and even leniency for homework assignments, they excused a lot because they knew that I was truly giving it my best effort. Extra help also gives you the opportunity to have a conversation about your learning. The teacher will explain a topic in four different ways, instead of the two she will explain in class. If you’re meeting with a tutor, that person will break things down into steps you can understand and remember. Never be afraid to go to extra help – it will only help you in the end.

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The Good Side of Trigeminal Neuralgia?

Being a TN kid is not easy. Everyone has to work hard in school to do well, and TN kids have to work even harder. But there is a good side. I’m not kidding!

It made me a hard worker

My brothers had an easy time in high school, and I struggled. When we went to college, my brothers couldn’t slide by like in high school. I was already used to working hard, so the transition to college was much easier! And guess what? I graduated college with a 3.94 GPA! You can go to college with TN and do well! In fact, I think that having TN made me a better student in college.

You will have an amazing college application essay

Your experience is so unique, and it will be sure to help you stand out in the crowd of college hopefuls.

You can speak up for yourself

When my friends all struggled to speak up for themselves in college, I had no problems because I had experienced it in middle school in high school. The nice thing was, as I was learning those skills, I had my parents to guide me, which made the situations easier. My friends did not have this luxury. Be proud that you can speak up for yourself!

You can apply to a wide range of scholarships

Form scholarships about chronic pain to those about overcoming a challenge, it is not difficult to find a way to relate your TN experience to a scholarship prompt. Apply away! You never know what you may receive!

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So, fellow TN kid, as someone who has gone through it and has come out the other side, I am here to tell you that you CAN do this! You only get to be a kid once, so do your best to enjoy as much as you can. Remember that everyone is dealing with something difficult in their lives, and while TN is so difficult to deal with, everyone is struggling for one reason or another to get through school. Just do the best you can and remember that you are not in this alone. I’m rooting for you, and so are the other TN kids, and TN kid-turned adults! You got this!

❤ Ellie