How Being Born With a Cluster of Veins Affected My Nervous System and Overall Health
- 2 days ago
- 4 min read
Written by Joseannie Martinez, Author and Advocate
Joseannie Martinez is an Afro-Dominican and self-publishing author from Paterson, New Jersey. In 2020, she launched her Instagram account @lightlyepilepsy to shift the narrative, destigmatize epilepsy, and provoke conversations.
Right before I hit puberty, around the age of ten or eleven, I began experiencing excessive sweating under my arms. All it took was anxiety, overthinking, or feeling overwhelmed, and my armpits would become completely drenched. At the time, I never understood why it was happening. Even now, as an adult, I still sweat excessively, especially when I am overheated or anxious. I considered getting Botox treatments for it, but I did not want to deal with the possible side effects.
For years, I assumed this was simply how my body worked. Then, at almost thirty years old, I discovered I had been born with a cluster of veins in my brain. By that point, I had already been living with epilepsy for more than half my life, so learning this information so late was shocking.
When I was twenty-one, after being diagnosed with epilepsy, I had my first MRI. At the time, doctors told me they saw what appeared to be a scar on my brain. Nearly ten years later, I underwent another MRI after experiencing strange sensations on the left side of my body. This MRI, performed with a more advanced Tesla 3 machine, revealed a cluster of veins located in my right temporal lobe.
Not long after that discovery, I was hospitalised and underwent an EEG, which led doctors to diagnose me with right mesial temporal sclerosis. This condition involves neuron loss and scarring in the brain and can sometimes develop after high fevers, severe brain injuries, or strokes.
Receiving all of this information within such a short period of time was overwhelming. Learning that I had been born with this cluster of veins and had gone decades without knowing about it forced me to reflect on my childhood and teenage years. Suddenly, many things began to make sense.
As a child, I suffered from frequent high fevers. Looking back, I also realise I had likely been experiencing focal seizures long before my official diagnosis. At the time, I thought I was only daydreaming often. I experienced intense déjà vu episodes so frequently that they felt normal to me.
The excessive sweating I experienced also made me wonder about the connection between my brain, hormones, nervous system, and endocrine system. Over time, I noticed that hormonal changes, especially during ovulation, greatly affected my epilepsy and seizure activity. As my hormones fluctuate with age, my epilepsy changes as well. I cannot help but wonder whether the cluster of veins in my brain, which may have impacted my nervous system my entire life, contributed to these symptoms. Anxiety would immediately trigger sweating episodes for me, and much of that anxiety developed from childhood trauma, including my parents’ divorce and constantly moving from place to place.
Around the same time the excessive sweating began, I also started experiencing night terrors. I would wake up in the middle of the night screaming, yet the next morning, I would have no memory of it happening. The only reason I knew about these episodes was that my father would ask me why I had been screaming during the night.
By my teenage years, my seizures became more noticeable. Looking back now, it feels as though years of neurological symptoms, emotional stress, anxiety, and internal tension had been building within me long before I ever received answers.
As difficult as this journey has been, it has also given me a deeper sense of purpose. Discovering that so many of the experiences I struggled with were connected to my epilepsy and neurological condition inspired me to begin writing. For years, I carried confusion, fear, and unanswered questions about what was happening inside my body. Writing became a way for me to process those experiences and transform them into something meaningful for others.
My health journey ultimately led me to write my children’s books, including Lucky Feels Fuzzy and Lucky’s First EEG. Through these stories, I wanted children living with epilepsy and neurological conditions to feel less alone and less afraid than I once did. I wanted families to have conversations about seizures, testing, anxiety, and brain health in a way that felt comforting and understandable.
What once felt like years of suffering and uncertainty eventually became the foundation for advocacy, storytelling, and healing, not only for myself, but hopefully for others navigating similar experiences.
Read more from Joseannie Martinez
Joseannie Martinez, Advocate and Author
After being diagnosed with epilepsy at 16, she dreamed of writing children’s books inspired by her own experiences to help others. In 2022, Martinez published her first book, 'Lucky Feels Fuzzy'. The story features a character with epilepsy and serves as a self-help resource for young readers, teaching them how to express their symptoms and advocate for themselves. By including cats of various colors, she also promotes inclusivity and highlights that epilepsy can affect both humans and animals.
