riding the waveThe story behind Rare Spike Music started back when I was 2 ½ years old and I began suffering from random strange abdominal pain and distention like you might see in a colicky horse. For about a year, doctors thought it was a weird stomach problem—eventually securing my stomach to my abdominal wall to see if this might help me. My family was hopeful, but unfortunately, it only took a few days for them to realize that it wasn’t the stomach that needed fixing.
In fact, once tied down, it was easy to see that my GI tract was still receiving some sort of errant “signal” to distend. My stomach could no longer bloat as much, but it sure wanted to. As if on cue, my body reacted to being restrained from this outlet by offering new subtle manifestations of this charge like strange eye movements, coordination issues and slurred words.
With the onset of these new symptoms, it was time to abandon the GI team and search for another set of “experts.” Problem was, nobody was sure what path to take. Was I allergic to something strange? Did I have a metabolic or nutritional deficiency? Was I suffering from an obscure mitochondrial disease or genetic anomaly? Was my brain subtly malformed? The list of possibilities was quite literally endless.
The next 18 months, according to my parents, were terrible. They went down every path possible, holistic and otherwise, while simultaneously trying countless medicines to ease my pain. The GFCF diet didn’t work. Tissue samples sent around the world revealed nothing. Scans and procedures yielded inconclusive data at best. Medicines had frightening side effects. (Thankfully I have no memory of any of this!) Indeed, of all the things that were tried, there appeared only one light in the darkness. It was around this time my mom noticed me trying to soothe myself with “music.” Doctors brushed off this “clue” and my parents were even unsure if what they were witnessing was real or just a happy accident.
Perhaps music was simply distracting me from my pain which in turn, kept my other symptoms at bay. Correlation verses causation was difficult to parse out. However, since banging on pots and pans, clanging on the piano, and listening to CD’s seemed to help me, these things became a huge part of my life at a very young age. And so, my parents encouraged all of it to the point that music became my primary medicine. And if you ask my folks, it worked fairly well until such time that I started first grade.
Turns out, eight hours a day without music proved to be disastrous. My symptoms responded with a vengeance, and I too, responded in kind. I wasn’t a happy camper. So, doctors settled on a drug designed to help me “stabilize my mood.” The drug was called Lamictal, and I took it reluctantly. For while it had the least bad side effects, it still caused drowsiness and confusion—two things that made learning even more challenging than it already was. Lamictal was also my last best hope since I had already tried and failed so many other medications.
And so, these prescriptions, music and Lamictal, became my lifeline for the better part of a decade. It wasn’t great because school hours were still such a struggle, but I managed as best as I could until puberty messed up this delicate dance and I could manage school no more. By comparison, as my school hours became increasingly difficult, I retreated further into studying music, and the positive effect these blocks of time had on my symptoms became more obvious. It was no longer deniable. While I was performing, listening or composing—while I was keeping time—I just felt better. Convinced my life could be improved, my mom went back to digging into my extensive medical files to see if there was something she missed.
Increasingly suspicious the cure lay deep in my brain, she pushed for new tests including longer more sophisticated inpatient EEGs. These studies had a better chance at uncovering hidden data than the short versions I received when I was younger—the ones that were inconclusive. Lamictal had worked to some degree so perhaps, she argued, the benefit it provided was from its anti-convulsant properties and not the mood-stabilizing effects for which it was initially prescribed. Finally, after great effort and much luck, I was admitted to an advanced epilepsy monitoring unit and the results were enlightening. The elusive "rare spikes" revealed in the tracer, an anomaly in brain activity, turned out to be the missing link that finally led to my diagnosis of an atypical form of epilepsy called Abdominal Epilepsy.
Armed with this new diagnosis, my parents set out to learn all they could. However, with only 36 cases in the literature to guide them, progress was slow. My growth spurt unfortunately was not. I grew 5 inches in a year. This surge meant that Lamictal behaved differently in my body with larger does required to keep my symptoms in check. Soon, the amount of the drug I needed exceeded levels I could tolerate, often even leaving me too thin and weak even to escape into my music. As my seizure-like activity became more frequent, my only relief came from emergency does of Benzodiazepines administered by the school nurse or in the ER, depending on the severity of my symptoms. Turns out benzos aren’t great for learning either, so after a few years of living like this, by the time I was 15, attending school was a farce.
Thankfully for me though, my salvation was not far off! Inspired by the rare spikes that confirmed a diagnosis and having studied all they could get their hands on about music and epilepsy, my parents came to believe that the Vagus nerve held the key to making me well. Because the nerve is in close proximity to the ear, when we listen to music, the vibrations of the sound resonate in the eardrums before traveling through the Vagus. Depending on what type of music suits us, the nerve can sometimes be modulated to trigger a parasympathetic response that soothes the body into a calmer state. Importantly for me, the nerve is also associated with physical functions like heart rate and digestion, and when it is activated, it sends a signal that it’s time to modulate these functions.
Could it be possible that my Vagus was not getting the appropriate amount of this signal? Were that to be the case, it would make sense that a brand-new implant, a cardiac-based seizure detection and closed loop stimulation system, might have some success at treating my abdominal epilepsy. After all, not unlike rhythms and beats can, this new Vagus nerve stimulator could effectively offer another way to mark time, but with a pulse of energy instead of a note.
With this in mind, my parents felt certain that when uniquely coded to shock me with an intensity, frequency, pulse width, on-time, and off-time that correlated to my symptom suppression, this new VNS could soothe me much in the same way that music had been inadvertently doing since I was a young boy. Thankfully they found an amazing epileptologist and neurosurgeon who agreed.
And the rest, as they say, is history. In 2016 at the age of 16, I became patient 37 in the collection of case studies representing the syndrome called Abdominal Epilepsy. Happily, I also became the first with my condition to attempt treatment with a VNS. Today, because of this amazing device, I now live my life free of pain and seizure activity, and I hope my case study can serve as a guide to others who may suffer from something similar to me.
In closing, I’d like to point out that while many epilepsies are still poorly understood, it should be no surprise that music contributed to my healing. It is well-established that art can be a powerful adjunct to science, and I am thankful that the people who helped me get well recognized and embraced the idea that music was somehow helping me. I am also forever grateful to be one who arrived just at the right point in time—when the power of “keeping time” was finally harnessed. I hope naming my company Rare Spike Music can be my tribute to this gratitude.
For more information on Abdominal Epilepsy and the effect that music can have on epilepsy, please visit the links below. What I offer here is hope. It should not be considered medical advice as I am not a physician.
Abdominal Epilepsy Treated With Vagal Nerve Stimulation: A Case Report
The Acute Effect of Music on Interictal Epileptiform Discharges