STRENGTH IN EVERY STORY™
Ava’s Story, September 2025
*As told by: Katie Andrews
Diagnosis received: Chronic migraine, trigeminal neuralgia
Symptoms: Intense pressure and throbbing pain in the forehead, sharp, electric, and/or dull pain on cheeks, jaw, ears, sensitivity to sound, sensitivity to light, fatigue, dizziness
Ava was just nine years old when her life quietly began to change.
At the time, she was a competitive gymnast. She was strong, active, and constantly in motion. When headache attacks started showing up during practice, she didn’t think much about them. Like many kids, she assumed they were temporary. But the pain didn’t go away. It followed her home, then into the next day, and then the next.
“I remember I was 9, I started getting, like, headaches, chronic migraines,” Ava shared.
What began as continuous head pain soon became something much bigger, and much harder to explain.
Searching for Answers as a Child
Over the next several years, Ava’s migraine symptoms worsened. She saw a neurologist after neurologist. She saw four in total, yet no one could explain why a child so young was in so much pain. She tried different treatment plans and medications, and her hope would briefly rise, only to fall again.
“They couldn’t figure out what was going on, and whenever they did give me medication, it wasn’t working, it was only making things worse.”
Instead of relief, Ava experienced side effects. School became impossible. Hospital visits became routine. By the time she was 13, Ava had been hospitalized almost every month, including a stay that lasted over a week for an intensive migraine treatment protocol that was “supposed to work.” It didn’t. The doctors were confused. Ava and her family were exhausted.
A Rare Diagnosis and a Turning Point
In 2020, after years of unanswered questions, Ava and her family sought help outside their home state. They connected with specialists at the Diamond Headache Clinic in Chicago. It was there that Ava finally received a diagnosis: trigeminal neuralgia. Few pediatric patients had ever heard of it.
Rare in children, trigeminal neuralgia is a neuropathic facial pain condition, causing shock-like one-sided pain. For Ava, the diagnosis explained why standard migraine treatments hadn’t helped. “All of the typical migraine treatments that they would do for other people… it wasn’t gonna work for me.”
While having a name for her pain brought clarity, it didn’t bring a cure. Ava still lives with head pain every single day. “I’ve never not had a migraine. Every day I have headaches and pain, like right now.”
Growing Up Faster Than Planned
Living with daily attacks and chronic pain meant Ava’s childhood looked very different from her peers’. Dreams she once held tightly had to be let go. “I wanted to be in the military. I wanted to go to West Point. I wanted to be in the FBI.” As her health declined, those goals slipped out of reach. Dropping out of school was one of the hardest moments of her life.
“Dropping out of school was probably one of the most sad, depressing, whatever moments.” At a time when many teenagers are planning for college, Ava was grieving about a future she had worked toward for years. “I can’t get it anymore.”
Living with an Invisible Illness
Headache disorders are often misunderstood, and Ava has felt that deeply. “I feel like migraines are something that you can’t see. It’s like an invisible illness.” Because others couldn’t see her pain, they didn’t always understand it. Friendships were hard. Isolation became familiar. And like many people living with headache disorders, Ava felt the weight of being judged for what she couldn’t do. “It’s not just a headache… it’s a debilitating type of disease.”
Her attacks come with far more than head pain. Other symptoms she experiences are fatigue, dizziness, and the inability to function during severe attacks. Sometimes, the pain is so intense that her mind blocks it out entirely.
“My mind kind of wants to block out what is happening…I think as a coping mechanism… my mind is blocking it out.”
A New Direction and a New Purpose
At 17, Ava made a life-altering decision. With limited access to care in Florida, she moved to New York to be closer to specialized doctors. For the first time, she was managing her care largely on her own. “It’s probably… a full-time job. It’s the hardest thing I’ve ever had to do.”
Along the way, Ava received additional diagnoses and answers that she had searched for over several years. More importantly, she found something she never expected: purpose. “Because of the migraines, I grew a passion for the advocacy itself.”
Today, Ava is involved in headache and rare disease advocacy, participating in events like “Headache on the Hill.” She is also a member of the Young Adult Rare Representative Program at EveryLife Foundation for Rare Diseases, a partner development volunteer with the Facial Pain Association, and works with national organizations to push for better care and policy.
“If none of this had happened to me, I most likely 99% would not be going in that route. It’s kind of like a blessing in disguise… I found my true passion.”
Why Ava Shares Her Story
Ava knows her journey is ongoing. She still lives with daily attacks. She is still searching for answers. But she shares her story so others, especially young people, feel seen. “I just wish more people were… just understanding of what people are going through.”
Her message is simple, but powerful: headache disorders are real, debilitating, and deserving of empathy. With greater awareness comes better care, stronger support, and hope for the future.
*Disclaimer: This real story was drafted with AI assistance and reviewed for accuracy by the National Headache Foundation