Aanya Patel's Experience With Post-Concussion Syndrome and Migraine
Falling on the stairs in her home when she was 13 changed Aanya Patel’s life in ways few teenagers could ever imagine. After developing post-concussion syndrome and migraine from the head injury, Aanya learned the value of telling the truth about her experience and how to advocate for herself with teachers and friends. That led her to start Calming My Storm, an unincorporated nonprofit dedicated to helping people with concussions and migraine thrive.
Aanya’s wisdom about life with migraine is far beyond her years. I know that is clichéd, but she impressed me with her willingness to be vulnerable and not hide her symptoms when I spoke with her. She has learned lessons that can help everyone with migraine live better with this disease.
Aanya’s injury and diagnosis
After a severe concussion three years ago, Aanya immediately had a constellation of symptoms, including light sensitivity, sound sensitivity, nausea, and balance issues. Although her symptoms continued to linger, health care professionals told her they would go away in time. After nine months of these symptoms, Aanya started having migraine attacks.
She still has frequent migraine but says they are much better thanks to the SpringTMS. She’s now has a couple of migraine attacks a week and still has constant head pain.
The value of lifestyle changes for managing migraine
In addition to using the SpringTMS, Aanya says that “the lifestyle changes are way more important than I ever realized. They have been the most significant part of me being able to recover.”
Although she was initially resistant to lifestyle changes, Aanya says, “I think a lot of people who suffer from migraines don't initially realize how significant [lifestyle changes] are. I remember sitting in neurologists’ offices and bawling my eyes and being like, ‘I don't understand why doing those lifestyle changes will matter.’ But I think for me, now I've really understood, like, wow, that really makes a difference.”
Missing school and playing catch-up
Aanya is currently 16 and a junior in high school. She was in eighth grade when she experienced her injury and missed six months of school. When she started high school, “I jumped in with a full schedule, like athletic activities, clubs, everything that you think a normal high schooler would do,” she said. “I was still having the symptoms, but everyone was like, ‘No, you should just resort back to normal.’ And then I started having horrible migraines. And as a result, I couldn't really keep up with my classes... My school was really good about my accommodations, but it was still really tricky. And hard to keep up. Especially because I was always playing catch-up.” She spent the summer after her first year of high school catching up. She got it done but said, “Oh my god, it was so much work.”
Managing migraine in a high school environment
High school is a particularly difficult environment for migraine, Aanya believes. “People all say the worst environment is in high school. And actually, when they go to college, it’s been better for a lot of people I've talked to because you're more in control of your schedule, and what time your classes are, and things like that. When you're in high school, you're in the building for it, what, six hours a day, and you are in these highly lit rooms. Everything's constantly moving. Everything's constantly loud. There's constantly a lot of kids, and it's just always moving. And you can't really escape it.”
High school friendships and migraine
Navigating friendships with migraine can be difficult no matter what age you are, but poses special challenges in high school. Aanya has found that explaining her limits has helped her be closer to her friends. When she has to cancel plans, she makes sure to tell them, “I'm not missing this because I don't want to go. It's actually because I am suffering from migraine. I think it really shows you who's really your friends and who's really understanding.”
She feels like once she explained her illness to her friends, they were accepting and understanding, not just of her experience, but what it means to have migraine. “A lot of my friends will see me have a migraine and will be like, ‘Yeah, this is not just a headache, this is a big deal.’”
Talking to teachers about symptoms
Aanya initially had trouble opening up to teachers about her symptoms. “It's really a hard thing to do is to be like, ‘Hey, I really suck at this. But I really want to make sure that you don't think of me as anything less, even though I'm telling you this crazy thing inhabits my brain, of all things.’”
Talking to her teachers gave Aanya insight into migraine stigma. “I think that how you reduce stigma is by being really honest and straightforward. And explaining things and letting them ask questions because I would always be like, ‘Do you have any questions because I know that you want to support me, you just don't fully understand’ This is honestly crazy if you haven't lived it.”
But being open wasn’t her first instinct. “I would always be the type of person who didn't want to share. But I think I realized that there was such a power in it. Like I did with one teacher once because I explained why I bombed a test. And then they just understood so much. I was like, ‘Why wouldn’t I do this with all my other teachers?’” Aanya realized, “[hiding it] doesn't make any sense; I should be sharing.”
Aanya’s advice for living with debilitating symptoms
Aanya’s first piece of advice was about recovering from her concussion, though her wisdom applies to many types of struggles. She advises working toward recovering from your symptoms but not putting all your energy into it. “Focus on other things that make you happy, focus on your hobbies, focus on other things, and find ways to compensate for it. Sometimes, when you get too focused on [your symptoms], it makes you feel worse… [F]inding other things that make you happy that don't cause you pain is really powerful.”
Learn more about Calming My Storm
Aanya also spoke with me about Calming My Storm, the unincorporated nonprofit she started. You can learn more about her and the organization on my blog, The Daily Headache: Calming My Storm: Aanya Patel copes with migraine & TBI by starting a nonprofit
My dark room: