Living With Epilepsy Part One: What Are You Doin’ In My Life?
by Shelby Thompson
According to the latest estimates provided by the CDC, about 1.8% of adults aged 18 years or older have had a diagnosis of epilepsy or seizure disorder. While it’s a little outdated, this means that in the 2013 United States population, about 4.3 million adults suffer from this disorder. I am one of these Americans who is actively seeking treatment to eliminate, or at least greatly reduce, my epilepsy. Here’s part one of my story.
Don’t Do Me Like That: Having a Seizure
The early signs of an oncoming seizure are fast-acting (like Tinactin! Gross) and can lead a person into what is called an “aura” which is the preamble to the seizure itself. These can last mere seconds to minutes too many to count. The signs of my aura are common: I get dizzy, my mouth begins to water, I have a hard time swallowing, and I have a hard time thinking clearly or reading. Depending on how quickly the onset, I often develop a kind of tunnel vision. I have 20/20 vision, so I’m not exactly sure what myopia (near-sightedness) is like, but I imagine it must be like this as I can’t see things that are too far away clearly. My hearing is blurred, and often, I can only hear the sound of my own heartbeat or this weird swishing sound almost like I am under water. This is known as Bruit: an abnormal swishing or ringing sound in the ear caused by blood pulsing through an area of the brain.
Along with these symptoms, I also get mental confusion, including the inability to speak my thoughts coherently, or sometimes, at all. If I am alone, this causes no problems; if I am in public, I cannot communicate my needs. This, you can imagine, scares people. Even now, I can see why it can seem disturbing to see a stranger faint or go into convulsions.
As for the seizure itself, I’m not actually sure how long the convulsions last — but I’ve heard 30 seconds to over a minute at a time. Judging by the severity of bruising along my shoulders, knees, and elbows, and how I feel when I wake up, its probably pretty crazy to watch. The inside of my lips are often riddled with blood blisters and puncture wounds from where I’ve bitten down during my unconsciousness. If you witness what you think is a seizure, the CDC suggests that you help those who are seizing get onto the ground to minimize injury, make sure they can breathe clearly, and time their seizure. If it is over five minutes - call 911. Do not put items in their mouth like you see in the movies.
Since seizures are hard to track, it is not uncommon to see a person have one in public — I’ve had them all over the place. At the airport, in the kitchen, on the sidewalk, in the subway, with a man inside me… Seriously. It can happen anytime, anywhere.
You Wreck Me: Where Do They Come From?
Not everyone is the same, and neurologists are working hard to understand each person’s focal point in the brain, but for me, my epilepsy started in my adult life. My first seizure occurred on July 7, 2004, when I was 22 years-old, while babysitting for a Neuro-Radiologist in Asheville, NC. I was home alone with their three children when I collapsed in the kitchen and slammed my head against the wall, leaving a baseball-sized dent. Their mom pulled into the driveway as I lay unconscious on the floor. This family happened to have a son with various disabilities, including epilepsy, so when she found me, she had a sense that what had happened to me was not normal and immediately called 911.
As I had never had a seizure before I assumed I fainted from the heat or dehydration. I was a recent college graduate after all and hadn’t managed to maintain a good sense of self-awareness or self-control at that time - I still smoked cigarettes for crying out loud! I got to the hospital and after a CAT scan and a Sprite, I waited to be released since I still believed there was nothing wrong with me. Dr. Marx, however, had other plans. When he returned home and heard what happened, he decided to access my images on his home computer and saw something he didn’t like — a blurry dark spot in the CAT scan. He called the hospital and ordered an MRI on my behalf.
The MRI revealed an Arteriovenous Malformation (AVM) that I did not know existed, just like Nate Fisher on HBO’s classic series Six Feet Under. An AVM is an abnormal cluster or tangle of blood vessels in the brain or spine that complicate the normal blood flow. This birth defect happens either during fetal development or directly after birth. AVMs are relatively rare, approximately 300,000 (.14%) Americans have them; but only 12% of those folks experience symptoms. My symptoms presented themselves as — you guessed it — a seizure! So suddenly, I was admitted, put on an IV for anti-seizure meds, and requested to stay overnight to “discuss my options”.
Meanwhile, I couldn’t get in touch with my parents to let them know all of this. This was pre-everyone-has-a-smartphone, and my parents were at a fundraiser having a good time. I finally reached them around 10pm, and conveyed the life-changing information over a staticky hospital phone. My mom was tipsy, and could barely hear me, so when I said, “I’m at the hospital, I had a seizure,” she thought I said I had a “fever”.
“A fever,” she said, “How high could it be!?” Only when I spelled out “S-E-I-Z-U-R-E” did she get the gravity of the situation. They arrived the next morning, along with Dr. Marx, and a slew of other doctors, and I learned all about the brain, the AVM, and my choices for treatment. At the time of discovery in July 2004, the AVM was as big as a golf ball, and had to be treated as soon as possible for fear of rupture was highly likely. My options included either immediate invasive brain surgery to expose the area of the brain and remove the AVM completely; or a non-invasive, longer-healing option of precise radiation treatment with a tool called a Gamma Knife. I chose option two and that September my family and I drove to Charlottesville, VA to obliterate the AVM at University of Virginia’s Gamma Knife Center.
I Won’t Back Down: Embolization and Radiation
Shortly after I turned 23, I spent about a week in Virginia with perfect Fall weather, and underwent two non-invasive treatments: the first, an embolization. An embolization is intended to block the blood flow to the area and reduce the size of the AVM by repairing the weakened arteries and veins to stop a rupture. This procedure is considered non-invasive as it is done without opening the skull, but rather through tools inserted into the Femoral artery. Neurosurgeons inject biological glue or other embolic agents into the AVM via specially designed micro-catheters, which are guided directly into the brain via angiography. When I woke up from surgery, my head felt like it might explode from the pressure. I had no official wounds on my head, but I had endured anesthesia, and an embolization. I was allowed to leave the hospital to heal for a few days before returning for the next step: on-spot radiation via Gamma Knife.
The Gamma Knife works by using a helmet to accurately pinpoint the target area of radiation in the brain attached to a head frame (above). The helmet looks a bit like a colander with over 200 holes for the machine to locate exactly where to shoot the radiation into the brain. It takes a specialized team of neurologists, physicists, nurses, neurosurgeons, and others to pinpoint the exact location down to the millimeter to radiate without damaging the area around it. The machine is much like an MRI, you lay flat for a long period of time while loud noises happen around you and people check in periodically to let you know how much longer you’ll be there. It took about two hours for me, not including the prep and loading time as I was strapped into the machine. It’s pretty painless during the procedure, however, the removal of the head gear is excruciating. As they detached the frame from my face, it felt as though my teeth were shattering.
After the first round of treatment in 2004, I tried out a variety of anti-seizure medications from Dilantin to Lamictal to Keppra (which I am still on today), and went seizure free for nearly two years. Then, one calm spring day, I found myself more confused than usual while perusing the fancy cheese section at the local Greenlife (Whole Foods). My seizures had returned unexpectedly. Through annual MRIs to track the progress of the radiation, we discovered that the AVM had not full disintegrated as planned. So, in November of 2007, I went back to UVA for a second round of Gamma Knife radiation to eliminate the rest of the AVM. As I had experienced it before, I knew what to expect, and I was able to request improvements for pain management and boredom while recovering.
After this second round, I continued to get annual MRIs that eventually showed I had nothing left but serpiginous scar tissue in the area, with no bleeding or other indicators that the AVM was active. That makes it sound like a volcano — which, sometimes it seems like to me.
Make It Better (Forget About Me): Bionic Woman
Despite working hard to control my epilepsy, the seizures stuck around. So I began to seek palliative care options. In 2009, while living in Washington, D.C., my neurologists and I attempted to troubleshoot my seemingly increased epilepsy by tracking my diet, exercise, social habits, stress level, sleep pattern, even hormonal balance on birth control, followed by exhausting my Big Pharma options. I was tired of trying different medications and wondering where the side effects would take me, so we decided to try something new: maintain my daily anticonvulsant dosage and add an implanted device called Vagus Nerve Stimulator.
Although technically this device was implanted in my left pectoral muscle, its not that kind of implant. The device works much like a pacemaker. It sends electrical stimulation through the vagus nerve to the brain in regular intervals to help control the activity that can lead to a seizure. When I felt an aura coming on I held very powerful magnet up to my skin, and the generator doubled the amount of electricity sent through the vagus nerve to force the brain to sort of reboot. The goal is to help stop the seizure all together, or at least shorten the duration or intensity.
For the most part, it worked, along with a weird side effect of making me hum in my sleep as the leads pressed against my vocal cords too tight and caused a vibration. We changed the timing and intensity regularly to try and get the right “dosage” to keep me seizure-free. I even added my name to a list of people willing to speak to new patients considering this device, and offered my own story and success rate to encourage those who also found difficulty with medications to control their epilepsy. The only problem, as is often the case with palliative care, I was still prone to seizures, even if they were less intense or prolonged. And, as this medical device is a piece of hardware run on batteries — the power can only last so long.
In 2013, I had the battery replaced at Weill Cornell in a fairly non-invasive out-patient surgery. The only drawback, at the time my health insurance didn’t deem this to be a “required” surgery, so they only covered part of it, and I was forced into medical debt. How special. I carried on for the next 3 years as usual, treating my epilepsy with medication and the VNS, until once again, the battery got low and needed to be replaced. I refused to pay out of pocket for this necessary surgery, so I researched a neurosurgeon who met the following criteria: 1) in my network, 2) familiar with AVMs 3) familiar with VNS devices 4) taking new patients in the immediate future. Through this search, I got a limited number of names, one of which was Dr. Saadi Ghatan at Mount Sinai here in New York City. He met each of my criteria and had a five star review from patients.
I booked an appointment in September 2016 and went in expecting to have my battery replaced in no time. Boy, was I wrong. After hearing my complete medical history and taking a peek at an old MRI scan, Dr. Ghatan had something else in mind entirely. Check out Epilepsy Part Two: Into The Great Wide Open for what came next.
Shelby Thompson is a writer, a poet, and a storyteller. She hosts the Big Irv’s Presents: Ladies Night Storytelling Show in Williamsburg, and participates in various other storytelling events when available. She has been published in The Exposed, BUST, METAL Magazine, among others, and her poetry has appeared in small print collections and art galleries in Brooklyn.
Follow her @shelbsthomcat on Instagram & Twitter.
