Living with Epilepsy

Epilepsy Overview:

Epilepsy preys on us in the most unlikely circumstances. The early signs of an oncoming seizure are fast-acting (like Tinactin), and can lead you into an aura that lasts mere seconds to minutes too many to count. Mine spring on in the most uncomfortable way. Instantly my mouth begins to water, and I have a hard time swallowing, followed by acute nausea often accompanied by diarrhea.

My head doesn't hurt anymore like it used to, at least not pre-seizure. 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 gets, well, blurry too. As in, I can't hear as usual, 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 also 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 clearly, or sometimes, at all. If I am alone, this causes no problems; if I am in public, I cannot communicate my needs clearly. This, you can imagine, scares people. It is amazing how disturbing it can be to see a stranger faint, or worse, go into convulsions.

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. My lips are often riddled with blood blisters and puncture wounds from where I've bitten down during my unconsciousness.

I've had seizures 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.

My Epilepsy Story:

My epilepsy came on in my adult life as a result of an Arteriovenous Malformation (AVM). An AVM is abnormal cluster or tangle of blood vessels in the brain or spine. This birth defect happens either during fetal development or directly after birth when an infant's organs are still forming. AVMs are relatively rare; approximately 300,000 (.14%) Americans have them, but only 12% of those experience symptoms. My symptoms presented themselves as - you guessed it - a seizure! My first, occurred on July 7, 2004, when I was 22 years-old, while babysitting for a Neuroradiologist. Consider those odds. In addition, Dr. Marx had a son with various mental disabilities, including epilepsy. I was home alone with his three children, and collapsed in the kitchen, hitting my head against the brand new wall, leaving a baseball-sized dent. His wife, Lisa, pulled into the driveway as I lay unconscious on the floor. 10 minutes before and the kids would have still been in the pool outside, 10 minutes later, I would have been driving home.

As I had never had a seizure before, I thought I fainted from the heat, lack of a good diet, and dehydration. I was a recent college graduate after all, I 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, got a CAT scan and a Sprite, and waited to be released. That plan fell apart as soon as Dr. Marx returned home and accessed my scans on his home computer. After seeing a blurry dark spot in the CAT scan, he called the hospital and ordered an MRI. They told me the CAT scan didn't come out right, so I still sat oblivious to my brain condition. The MRI revealed the AVM, and suddenly, I was admitted, put on an IV, and requested to stay overnight.

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 could barely hear me, and 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 I learned all about the brain, the AVM, and my choices for treatment.

My Treatment:

My AVM was located in the front temporal lobe, home of the Wernicke's area - the sections of the brain responsible for speech. The AVM was as big as a golf ball, and had to be treated, as a fear of rupture and bleed were highly likely. My options included either invasive brain surgery - a crainiotomy, to expose the area of the brain, and remove the AVM completely; or a noninvasive, 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 spent about a week in Virginia with perfect Fall weather, and underwent two noninvasive treatments: the first, an embolization to reduce the size of the AVM using biological glue. The glue is injected into the AVM via specially designed microcatheters, which are guided directly into the brain via angiography (insertion via femoral artery). The reduction in size assists with the second treatment: on-spot radiation. The Gamma Knife works by using a head frame to accurately pinpoint the target area of radiation. It looks a bit like a colander with over 200 holes for the machine to locate exactly where to shoot the radiation into the brain.

While it is noninvasive, it is not painless. An angiography opens and inserts a catheter into the femoral artery, one of the body's major arteries, that if not properly closed after surgery, can rupture, causing a patient to bleed out. To close it, doctors have to carefully insert a plug that doesn't disturb the walls of the artery further, but also closes the hole intentionally placed there. The patient must be awake during this plug, and depending on the tactic, the patient must lie still for 4 to 8 hours post-op to confirm that that plug didn't rupture or tear the artery during placement. This plug feels like a what I imagine a gun shot wound may feel like if someone stuck their finger inside it and tried to dig out the bullet.  

After the first round of treatment in 2004, I got on medication, 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). The seizures had returned. In November of 2007, I went back to UVA for a second round of radiation to eliminate the rest of the AVM. Now, I've got nothing left but serpiginous scar tissue in the area, and my MRIs prove no bleeding or other indicators that the AVM is active. That makes it sound like a volcano - which, sometimes it seems like to me.

The seizures stuck around, and I can't be sure as to why. Maybe the brain can't handle that kind of trauma without always having an aftershock. I am confident that the staff at UVA did all they could to treat me, and there is no way they could have known the epilepsy would follow me. But here we are: I wear a medical bracelet, take medication daily, and have a medical device implanted in my body to help me live with this disorder.

My Life with an Implant:

Although technically my device is implanted in my left pectoral muscle, its not that kind of implant. In 2009, after troubleshooting my seemingly increased epilepsy by tracking my diet, exercise, social habits, stress level, even hormonal balance on birth control, and exhausting my Big Pharma options, my neurologist and I decided to try something new. By maintaining my daily anticonvulsant dosage, and removing additional medications that could be adding to my adverse side effects, I decided to get a Vagus Nerve Stimulator.

This device works much like a pacemaker, sending electrical stimulation through the vagal nerve to the brain in regular intervals to help control the activity that can lead to a seizure. When I feel an aura coming on, I hold a very powerful magnet up to my skin, and the generator either stops the flow of electricity, or doubles the amount to force the brain to sort of reboot. This can help stop the seizure all together, or at least shorten the duration or intensity. For the most part, it works. It also makes me hum in my sleep as the lead presses against my vocal cords and causes a vibration. Falling asleep on an airplane is pretty funny. So far, I've had the battery replaced once, and my insurance at the time didn't deem this to be a required surgery, so they only covered part of it. How special.  

How to Handle a Seizure:

The old put-a-spoon-in-their-mouth trick has been generally dispelled by medical community, but has managed to stick around as an aid. Do not do this. Ever. It is true that some people - like me - bite their tongue, cheeks, or lips. But it is generally best to be sure that a person having a seizure is safe from harm by removing objects around them, even putting something under their head to be sure they don't bang it on the ground or whatever surface they find themselves in. Do not leave them alone. Check for a medical ID or bracelet. Some seizures finish themselves in 30 seconds to a minute, if it goes on longer, or another seems to happen immediately, call 911. Sudden Unexpected Death in Epilepsy (SUDEP) is a real thing. This is not meant to scare you, just to keep you aware. Not all seizures require a trip to the ER in an ambulance, but if you are in any doubt, it is better to be safe than sorry.

Questions?

Feel free to reach out to me with any questions about epilepsy, medications I have tried, Gamma Knife, VNS, or anything else! shelbylthompson@gmail.com. Thanks for reading - knowledge is power.