“I thought it was hormone related and didn’t think there could be anything wrong,” Susan Ash said of thinking she was suffering from migraines after welcoming her first child.
What she couldn’t have predicted was that she was experiencing partial seizures as a result of a brain tumor.
The 25-year-old, from New Hampshire, started to experience symptoms when she was just 10 years old and was told they were ocular migraines. They went away for a while, only to return two weeks after she welcomed her daughter in July 2024.
As a postpartum mom, her body was already going through a lot so Ash “didn’t think much of it,” she told Newsweek.
@susan_ash__ / TikTok
“The first few weeks with a newborn are tiring, scary and a huge learning curve. I was trying to get adjusted to being a new mom, so I just thought they were ocular migraines,” she said.
Among the other symptoms Ash experienced were severe mood changes, which she again assumed were postpartum related. Small visual disruptions when looking at screens or the color white and biting her cheeks while asleep turned out to be a sign of seizure activity.
The new mom mentioned the “migraines” during a checkup, just in case. She was given a neurology referral, but in the meantime her primary care physician gave her magnesium supplements.
“As soon as I added the magnesium to my daily routine, the length and style of the ocular impairments improved,” Ash said. “I was only having a couple a day compared to almost 20. But it only improved with magnesium because that can help with migraines and seizure activity.”
Since she was feeling better, Ash canceled her neurology appointment. As she’d already taken so much time off work to have her daughter, she dreaded the thought of taking more leave.
Turn for the Worse
However, her health took a turn for the worse on October 18 when she experienced a grand mal seizure at a soccer game. She recalls raising her arm and turning her head before she froze in place. Her brother-in-law recognized the signs of a seizure and an ambulance was called immediately.
“When I opened my eyes, I was in the back of an ambulance with an IV in my arm,” Ash said. “I didn’t really understand, I just thought I’d passed out and I was going to get a lecture about being dehydrated.”
Ash underwent multiple tests, an MRI and a CT scan with contrast. That was when they discovered a 1.6-centimeter tumor on her brain.
When the doctor broke the news to Ash, she said it was “like the movies” because the room around her became blurry and she couldn’t focus on what he was saying.
“When he stepped out, I lost it. I cried hysterically while holding my 3-and-a-half-month-old baby, praying she wouldn’t have to grow up without a mom,” Ash added.
At just 24, she was diagnosed with a brain tumor in her left occipital lobe and epilepsy.
It’s not uncommon for symptoms of slow-growing tumors to “sneak up on” people over time, according to Dr. Heather Hinshelwood, an emergency medicine physician and chief of medicine at The Fraum Center for Restorative Health.
She told Newsweek that those people often ignore the signs for a while “until they reach boiling point.”
Dr. Hinshelwood lists the following criteria for a possible brain tumor:
- New onset neurologic deficits (weakness, loss of balance, vision changes, numbness in part of the body)
- Acute onset of the worst headache, commonly called a thunderclap headache
- Bizarre personality changes
- Headaches which started a while ago and have escalated
- A patient you suspect wouldn’t complain of a headache unless something were seriously wrong
- Intuition telling me something is wrong without any hard signs
- New onset seizure
It’s thought that Ash could have had the tumor for a decade, or was maybe even born with it.
Subsequent appointments have left Ash and her medical specialists trying to understand her symptoms. Indeed, she was asked if she ever bit her cheeks, which seemed peculiar to Ash at first. But then it all made sense.
“I immediately said no, but when I thought about it I realized I have had canker sores most of my life and [this] was always caused by biting my tongue or cheeks in my sleep. I have since learned that this is a sign of seizure activity,” Ash said.
For now, she is trying to control the seizures through medication and the tumor is monitored with regular scans. Medical professionals are split on the best way forward, as some believe it should be taken out while others fear that surgery could have lifelong implications. The tumor’s location means Ash will likely to lose her vision someday but removing it could lead to visual deficits.
Sharing Her Story
Ash has documented her journey on social media (@susan_ash__ on TikTok and @susan_ash_ on Instagram). At first, she hoped to find other content creators talking about similar experiences, but since they were very few and far between she decided to be a voice for others. Her videos discuss everything from symptoms to scan results and side effects of her medication.
Ash often thinks that had she seen a video detailing the signs of a brain tumor she probably wouldn’t have canceled that neurology appointment.
“A baby and a brain tumor were not on my 2024 bingo card, but my daughter has been the light in my darkest days. Being a new mom is hard, but being diagnosed with a brain tumor has taught me to slow down and live every day,” she said.
Ash doesn’t share her experience to scare others, but rather to raise awareness for the symptoms that are easily overlooked—and to encourage others to be their own advocate and speak up when something isn’t right.
Ash said: “Take the time to see your doctors, use time off or go unpaid—believe me, I know that is easier said than done. I did it and missed a brain tumor being diagnosed because I thought work was more important.”
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