STRENGTH IN EVERY STORY™
Brian’s Story, April 2025
As told by: Fabiola Palomo
Diagnosis received: Migraine, dysembryoplastic neuroepithelial tumor (DNET), depression, post-traumatic stress disorder (PTSD)
Symptoms: Brain fog, left eye pain, fatigue, sensitivity to light, body pain, hand pain, stress
Brian, who started off as a U.S. Army National Guard and later, joined the Army Reserves for 23 years before retiring, was met with hardship as he began experiencing seizures due to a dysembryoplastic neuroepithelial tumor (DNET), a rare, benign brain tumor that emerges from abnormal development of both glial cells and neurons, which occur in children and young adults and is often associated with seizures and epilepsy.
While experiencing headache attacks had never been unfamiliar to Brian, this time around, the attacks had increased in severity. The act of retreating to a dark room when experiencing the worst of his symptoms was the short-lived relief he could count on. Though at the time, he would come to dismiss migraine for tension-type headache.
After the incident occurred, Thomas’s head pain would be mistaken for allergies and would later be more persistent, defined as migraine.
Differentiating Migraine for More Than 'Just a Headache'
In 1993, Brian experienced his first migraine attack to what he could easily differentiate from what he thought was tension-type headache or “just regular headaches.” Brian suspected what he was experiencing was a result of constant computer screen time at work, until it wasn’t.
By 2019, Brian decided his symptoms had their own hidden depths and were a lot more difficult to deal with. “It just seemed like it was more than just a headache that I would have had just from working a lot. So, I decided to talk to the doctor about it during an annual physical [exam].”
Later, despite having gone through LASIK eye surgery before, his symptoms pointed to vision problems, and he was expected to start wearing prescription glasses again. Still, his symptoms remained constant. With a history of experiencing seizures, Brian received an MRI and CT scan, revealing he had a DNET. To stop seizures, the surrounding hippocampus tissue and amygdala were surgically removed. The procedure had been a success, but his anti-seizure medication came with a double-edged sword as it presented several side effects, with headache attacks being one of them.
By 2021, after his surgery, Brian began his migraine care journey, but despite his efforts, relief remained elusive as he continued to face persistent symptoms. “At that point, it seemed I was OK after recovering. [However], the light was hurting more, and that affected me to where I would just have to sleep it off.”
Although Brian’s mind is a bit hazy with the sort of migraine treatment he’s received throughout the years, he clearly remembers a combination drug mix of acetaminophen, aspirin, and caffeine, injections in the stomach, as well as prescribed cannabis* doing very little to relieve the pain. “I found that I felt more tired. [With] a lot of the other medicines, that was an issue, that I get tired… I just sleep it off… I didn’t really think that it had the full effect of what I thought would be [from] something that [was expected to have] worked.”
His headache condition also began to take a toll on his social life. As his symptoms continued, the impact of his divorce became increasingly clear, exacerbating his head pain and leading to far more severe symptoms.
An Inclination to Help Himself and Others
Living with migraine or other headache disorders can impact a person’s ability to function at their full capacity. Similarly, Brian had been told his work was unsatisfactory, and he was medically discharged from the Army. “…I was no longer serving as a soldier. I got medically discharged and removed because of being told I couldn’t keep working because of those problems. I went back to working in the Army as a civilian, [though]. I was able to do that for over a decade since I was in the Reserves.
With effective treatment, gaining control of his life became more possible. Brian began searching for ways to start showing up for himself and be more consistent when actively seeking employment. After years of volunteer work, he decided it was finally time for a change. “Within the last year, I have done two temporary jobs, where it was, I’d say, less than part-time… [Gradually], I felt more confident that I could actually be more reliable to other people, working with me to help do a job that serves other people.”
For Brian, not only was getting his migraine symptoms under control an obvious necessity, but it had also cleared up a pathway toward acquiring a steady income and a focus on his career goals. “It’s a big factor where even thinking about doing it [job-searching] is more likely for it to happen [now],” added Brian.
A Call to Identifying Migraine Triggers
While identifying triggers is a step forward in taking an active role in gaining control over one’s health, it can also help healthcare providers and specialists give a proper diagnosis and start the best treatment plan. Despite having this established, there is still a lack of consistent discussion about triggers both within and outside a healthcare provider’s office. For instance, a common trigger that was hard for Brian to miss was certain weather conditions and changes in barometric pressure.
“A lot of people might not consider, or even if they do consider it, the doctors might say, ‘It’s not a factor,’ and we as patients, we might feel like we’re crazy for even thinking about it,” shared Brian. While living in Illinois, he considered the difference in the geographical locations that contributed to his migraine symptoms compared to where he resides now, in the West area of Texas. “It is different, and I think it’s reasonable to take that into consideration, but maybe not all doctors do, [which] you may need to try to really push them to consider it. Do what you can on your own to show that it [does play a role].”
A 4-Year Road for 'Treatment'
Although available at a discount, several other prescribed medications became challenging to afford, making Brian consider and explore other treatments to help manage his symptoms. However, hope came in 2024 when he started treatment with onabotulinumtoxinA (botox) injections. “…starting the (botox) injections in the forehead, that seems to have done the trick,” shared Brian. Since starting this treatment, he’s noticed a success in treating his trigeminal neuralgia as well as a significant reduction in both the frequency and severity of attacks, no longer having photophobia, commonly known as sensitivity to light.
“…I would say I’m going months without any headache symptoms. If I do have migraine symptoms, [it has] only [occurred] a few times, but it wasn’t enough to where it kept me from really doing some of the things I needed to do,” said Brian.
A Desire Toward Funding Migraine Research Efforts
For Brian, living with migraine extends far beyond pain and acknowledges how devastating the impact can be, affecting different aspects of one’s life. “I believe with headaches, especially migraines, I’ve read that those take people out of work andhave them designated as disabled… because they can’t work with those symptoms because it’s such a big impact…”
Such circumstances have become a reality for most, and Brian strongly believes it’s important to raise awareness for legislators to treat migraine disease with the same urgency and commitment given to other illnesses. “Funding into research on treating the total person [who lives with migraine and other headache disorders is important]… [but it can be accomplished] probably in a way similar to how funding’s gone for diabetes,” he explained. “Try to use a similar model… Up the [need for] research to put the money in now, to save money in the future [for it].”
Unable to ignore the physical, emotional, and mental toll migraine takes, Brian voiced how intrusive the disease is, “It’s kind of endemic. It seems like there are a lot of people that it’s affecting…” This is a truth that underscores the urgent need for stronger research investment and equitable access to care.
*Disclaimer: The use of cannabis is not currently approved by the U.S. Food and Drug Administration for the treatment of headache disorders or migraine disease. While emerging research and patient reports suggest a reduction in migraine frequency and reduced medication intake, the effectiveness and safety of cannabis for migraine management require further scientific investigation. Additionally, cannabis laws and accessibility vary significantly by state, and its use remains regulated under federal law. Individuals should consult with a healthcare provider and review local regulations before considering cannabis as a treatment option. (Practical Neurology, 2021)