This Person's Brain Tumor Symptoms Were Dismissed as Benign Headaches

After 15 trips to her healthcare provider for migraines, Beckie Hiley's symptoms were still dismissed. 

The 19-year-old from the United Kingdom spent months dealing with debilitating headaches that were ultimately hindering her from living everyday life. Hiley couldn't go to work or school and could barely keep food down. 

Despite the debilitating symptoms, healthcare providers told Hiley that the pain was just typical headaches. It took a trip to the emergency room for her to finally get a diagnosis: Brain cancer.

Hiley began experiencing headaches in November 2017. At the time, she was on medication for a different medical condition. She assumed that it was just a side effect of the treatment. But after finishing the medication in March 2018, her pain became worse. Hiley was settling into a new job, and the pain only became more intense as the months went on.

Headaches Accompanied by Intense Symptoms

"[The headaches] never 'hit' me or came out of nowhere like many people expect them to with brain tumors," Hiley told Health. "I woke up with a headache, which in itself is a symptom, and I went to sleep with a headache. The only time I wasn't aware of them [was] when I was asleep because I couldn't feel them."

Hiley said that healthcare providers tried to explain it as a "stress" or "tension" headache. Still, none of her pain patterns fit correctly with what she was being told she had. 

"In all honesty, the pain was excruciating," said Hiley.

According to Hiley, the pain began in her forehead, but it encapsulated her entire head over time. These symptoms did meet the criteria for a headache syndrome, but then in the fall of 2018, intense vomiting, nausea, and fatigue accompanied her headaches.

"I was not even able to drink tap water. Everything had to be boiled or bottled for my stomach to keep it down," shared Hiley. 

For nearly a month, she went through the same routine: One day, she would wake up with a terrible headache. The next day, she would throw up anything she tried to eat or drink. She'd spend the next two or three days sick before feeling "normal" again for a few days. Then, the pattern would restart.

During that time, Hiley began to develop even more terrifying symptoms, like a strange "whooshing" sound in her right ear. Later, she found out it was the result of pressure in her head. 

Despite all of those symptoms, her healthcare providers still believed that her pain was a byproduct of stress—but Hiley knew it was more than that.

"I have this intuition with my own body as if my brain was trying to reach some separate part of me that would listen and understand the pain I was in as well as realize what was causing it," explained Hiley.

Finally Receiving Answers

During the worst of her pain, Hiley began to experience double vision. Luckily, that was why she sought an optometrist—the same one who finally acknowledged that she was experiencing more than just a few tension headaches.

The optometrist noticed that her optic nerve (the nerve that transmits visual information to the brain) was swollen, which finally prompted doctors to do a CT scan. The scan showed a lesion on her frontal lobe. A biopsy revealed a gemistocytic astrocytoma, a subtype of astrocytoma brain tumor that is diagnosed based on having at least 20% of cells being gemistocytes.

"Obviously, the diagnosis was horrid to come to terms with, but I had finally been listened to, and that is what counted," said Hiley.

Hiley underwent surgery to have the tumor removed. But in early 2019, scans showed that it had regrown. 

"Being diagnosed means you go through so many stages of grief, and being diagnosed with a tumor twice means I've felt everything twice, too," expressed Hiley, who had chemotherapy and radiation treatments after her second brain surgery.

Summary

"To feel as if you aren't being taken seriously or listened to is such a disheartening situation to be in," said Hiley. "I had so many factors working against me that no one tried to see past it. I was a young girl, otherwise healthy, who had been taking a contraceptive pill known to give other users headaches." 

Despite her adversity, Hiley is making lemonade out of lemons: She's using her story to bring awareness to organizations like The Brain Tumour Charity and HeadSmart to help others learn about the signs and symptoms of brain tumors in young people.

Per the Johns Hopkins Medicine Health Library, symptoms of brain tumors in children are similar to Hiley's experience, including:

• Headaches, especially those that are worse in the mornings
• Nausea and vomiting
• Lethargy
• Changes in vision, hearing, and speech
• Problems balancing
• Seizures
• Larger head size than normal (in very young children)

According to Johns Hopkins Medicine Health Library, symptoms of brain tumors in adults can also include:

• Personality or behavior changes
• Weakness, numbness, or paralysis in one part or side of the body
• Confusion or disorientation
• Memory loss

These types of symptoms in addition to headaches often lead a healthcare provider to order a CT Scan or MRI. Instead, "The blame was placed on [the contraceptive pill] even though my headaches began two years after I was even on that pill," said Hiley. "I was generally healthy apart from my symptoms from the tumor, but to have no one use some common sense was horrific."

If you or someone you know have severe headaches, along with other symptoms like changes in headache patterns, changes in thinking or memory, or changes in hearing, vision, or speech, talk with a healthcare provider to request more testing, such as a CT Scan or MRI.