Tony: An Internist with Epilepsy

 

In September 1984, Tony was a pre-medical student anxiously awaiting the day he would begin medical school at Georgetown University.  While driving along a congested I-95 along the East Coast, the car immediately ahead swerved and crashed into the median while four lanes of traffic eked onward.  Tony, already equipped with the “helper” mindset that he would hone in medical school, stopped his car and ran to help.  The woman in the driver’s seat of the damaged car was suffering from a generalized tonic-clonic, or grand mal, seizure.

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Tony did his best to ensure the driver’s safety while he waited for emergency personnel to arrive.  Although he didn’t know it at the time, Tony’s first patient was suffering from the same illness that would plague him many years later.

Tony’s life preceding and immediately after his first brush with epilepsy on Interstate 95 was relatively worry-free and picture-perfect.  He grew up in the suburbs of Washington D.C. and was an avid tennis player, skier, and straight-A student.  He attended an esteemed private high school and was quickly admitted to an Ivy League college to continue his education.  While in medical school at Georgetown, he met his wife. Together they moved to Michigan to complete their residency training.

Immediately after completing residency, Tony and his wife found jobs in their respective fields and settled into life in the upper Midwest.  Over the ensuing years, they welcomed three beautiful girls to their family.  Tony and his family remained active and carefree until early in the morning on a winter day in November 2006. Although he does not remember all of the details, Tony recalls waking in the middle of the night with his wife hovering over him and asking him repeatedly if he was OK.  There were also two policemen and paramedics in the room, along with a neighbor sitting next to his bed and watching with concern.

Although Tony’s confusion was profound after his first generalized seizure, by the time he was transferred into the ambulance he had reassumed the physician role and gave advice to the emergency personnel.  The ensuing hospitalization and diagnostic testing led to Tony’s diagnosis of “idiopathic epilepsy” and he began to take the antiepileptic drug Dilantin.

Tony dutifully took his medication for the following year and his seizures disappeared as quickly as they came.  When the medication was weaned one year later, Tony hoped that his experience with epilepsy was a thing of the past.  However, slowly but certainly, smaller, partial seizures marched back into Tony’s life.  He had one in front of a patient, another one month later, and soon he was waking monthly in the middle of the night in the midst of a seizure.

As epilepsy reestablished itself in Tony’s life, further testing revealed a small area of atrophy, or injury, to his left anterior temporal lobe.  Tony and his doctors estimated that the injury most likely occurred years previously when his brain bounced like a ping-pong ball inside his skull after a skiing accident or trauma playing soccer.  Once the atrophic area was identified as a source for Tony’s seizures, he began the arduous process of trying to find a way to stop them.

Tony is currently undergoing evaluation to see if he is a candidate for epilepsy surgery.  He is taking two antiepileptic medications but can list the series of medications that he has tried and failed as if he were reciting a grocery list.

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“Carbamazepine didn’t work and caused horrible constipation,” he said.  “I tried oxcarbamazepine for a few days, and felt like I was stoned without the fun.  Zonisamide didn’t work and caused numbness and tingling in my hands and my feet.”

Tony states that he is currently tolerating phenytoin and levetiracetam relatively well although is emotions are more raw than ever before.  “I don’t know if that’s a medication side effect or epilepsy itself,” he mused.  “Recently my daughters saw me cry for the first time in twenty years.” Tony notes that since his seizures have escalated, his grown daughters have visited more, been in contact more, and are acting increasingly protective of their father. Tony’s wife watches him diligently and protectively.  Moments of silence and contemplation or repetitive movements like scratching his nose now warrant questions from his loved ones about a possible seizure.

Through his experiences with seizures, hospitalizations, testing and medications, Tony finds what’s most frustrating about his epilepsy is how it has changed his perspective of himself.

“My disease conflicts with my inherent personality.  Epilepsy has an incredible ability to change how I feel about myself.”

Throughout his career, Tony has enjoyed tremendous success as a physician.  He has been promoted as a physician leader in his health care system.  He repeatedly achieves the highest quality metrics in the care of his patients.  Despite this, his epilepsy undermines his success and makes him fearful for the future.

“The pride in my profession is the brain and our mental ability. Epilepsy is all about how we can hurt our brains. Being a physician with seizures is kind of like telling a football player you can’t bench press anymore.  How do you teach that person who always been the caregiver and first in line to help suddenly say ‘I need help, I need a hug?’ It’s so hard to say that.”

Despite his setbacks and frustrations, Tony has learned to ask for help and accept his limitations.  He’s recently made the decision to decrease his clinic hours in order to reduce his stress levels.  A former marathoner and triathlete, Tony has also backed off on his training and endurance exercise in the past year.  While he’s made these changes reluctantly, Tony is willing to do whatever it takes.  Like so many of us living with epilepsy, he hopes to once again live without the constant worry of when the next seizure will occur.

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Raising Awareness However I Can

Yesterday I was honored to be a guest on the Joy Cardin Show (listen to the broadcast here) on Wisconsin Public Radio to discuss living with epilepsy and my memoir, The Sacred Disease.  I was surprised by how many people called in to share their experiences with seizures, their hopes for the future, and the subtle ways that epilepsy changed their lives.  I walked away from the broadcast both excited to have participated in another forum to raise awareness and saddened that there are so many people who are touched by seizures in many different ways.

The following is a poem I wrote in effort to describe what it’s like for me to live with epilepsy.  I’m sure those of you who are touched by seizures can relate.  I cope with my uncertainty by writing and speaking out as much as I can.  What helps you?  Please share in the comments below.

Living with epilepsy means that I know the distinctive scent of EEG glue as well as I know the scent of my children.

Living with epilepsy means that I’ve learned how to fall asleep in MRI machines, wait patiently in doctors’ offices, and perform neurological tests without prompting.

Living with epilepsy means that I must not be the “Epileptic Patient” but rather “the patient with epilepsy.” I cannot let the seizures own me.

Living with epilepsy means that even some of my most significant days have been accompanied by seizures: the day I delivered my son, my tenth anniversary, Christmas Day, Thanksgiving.

Living with epilepsy means that when the familiar sensations of a partial seizure appear, I find myself searching for a place to sit away from view in case the simple seizure leads to something more.

Living with epilepsy means hiding my illness under a well-designed shroud, afraid that if others know that I have seizures they will lose their faith and trust in me.

Living with epilepsy means I examine my tongue each morning in the mirror to look for the characteristic bite that’s my sign of a nocturnal seizure.

Living with epilepsy means learning to ignore the staggering fatigue that comes with each new medication trial and medication adjustment.

Living with epilepsy means that I can list almost every anti-seizure medication and its associated side effect profile. I have tried them all.

Living with epilepsy means that I treasure the mundane and hold these things as close as possible, for fear of losing them: driver’s license, health insurance, life insurance.

Living with epilepsy means that I will consent to tests that turn off part of my brain, remain tethered to a wall with an extension cord for up to a week, and consent for removal of my entire temporal lobe in hopes for a cure that still eludes me.

Living with epilepsy means that I have created a handful of euphemisms to describe a seizure: head problem, not right, episode, incident.

Living with epilepsy means I feel compelled to join others like me and look down the long, dark road that I pray may ultimately lead to a cure.

Happy Epilepsy Awareness Month!

Happy Epilepsy Awareness Month!  I’m happy to announce that my memoir, The Sacred Disease, will be published on 11/16/15 and hopefully help to raise awareness about epilepsy during this important time.  The electronic version of The Sacred Disease is now available for pre-order on Amazon and the print version will be available for pre-order later this week.  If you’d like to contribute to a fantastic organization (100% of author royalties from the sale of my book will be donated to CURE) or learn more about epilepsy, please consider visiting the link below.

The following is an excerpt from The Sacred Disease when I was pregnant with my first son. . . 

DURING MY SENIOR resident rotation in the Neonatal Intensive Care Unit (NICU), my job was to attend all high-risk deliveries and lead the team of pediatric residents during newborn resuscitations. Most of the time, this job was simple and rewarding. We scrambled into delivery rooms like a team of blue-clad superheroes and gathered medical supplies for every contingency like a well-honed pit crew. After we prepped for the imminent delivery, we often had a few moments to settle back to our appointed spots in the corner of the delivery room and wait.

It was a privilege to witness the shocked look on a baby’s face as she opened her eyes to meet the world. During our evaluation and resuscitation, I loved watching the baby respond to the sensations of touch, sound, and sight. I relished the sight of translucent skin transforming from blue to pink and the sound of each new cry that welcomed the ambient air and swept the fluid out of a newborn’s lungs. I loved the new fathers, reduced to a puddle of tender surprise, who sidled up to the resuscitation table, peered over my shoulder, and watched, mesmerized by life’s first moments. Each time I handed over a dry and bundled baby to speechless parents, I loved to say, “He’s perfect!” while I surreptitiously patted my belly and wished for the same scene to play out in my life.

Unfortunately, not every delivery was picture-perfect. Most of the time, we knew if the baby had a birth defect or major medical problem before the time of delivery, thanks to the accuracy of prenatal ultrasounds. Still, there were a few surprises.

I was working one night when we were called to an emergent Cesarean section of a baby who had an unexpectedly trapped hand poking out of the cushioned confines of her mother’s uterus. Somehow, through twists and contortions in the womb, the baby’s arm became stuck over her head. During the initial phase of labor, her mother delivered the baby’s hand but was unable to deliver the rest of the baby.

I jogged down the hall with the pediatric team, following the gurney that carried the laboring mother. A group of concerned obstetricians swarmed around her. We hurried to scrub our hands and fingernails and donned our surgical masks, hats, and booties before we fanned out to our respective positions in the operating room. I stood sideways next to the infant warmer; my pregnant belly interfered with my ability to fit easily in tight spaces. I wondered what to expect while I watched the obstetric team make a quick incision to free the baby.

Moments later, the pediatric intern swiftly placed the baby on the warmer and we began our assessment and resuscitation. I reflexively dried and stimulated the baby and my anxiety decreased when I noted that she was breathing and crying spontaneously with a vigorous heart rate. Three of her four limbs flexed and extended as expected, but the fourth, the right arm, lay limply at her side like an azure balloon.

I touched and lifted her arm with hesitation. Her fingers looked like five blue sausages attached to a ballooned arm. Her entire arm jiggled like electric-blue Jell-O when I gently laid it back on the table. Soon I sensed the presence of the new father over my left shoulder. Instead of pronouncing the baby perfect and healthy, I explained that we would have the pediatric orthopedic team assess the baby’s hand and arms promptly.

Tears welled in the father’s eyes. Over the cacophony of the noisy delivery room, I gently asked him what they planned to name the baby.

“Elizabeth,” he uttered through tears. “Just look at her,” he continued. “Her eyes are exactly like her mother’s! She has a dimple on her chin like me! And look at that thick head of hair! She’s going to be a beauty.”

I nodded and relaxed, ashamed that I’d thought the baby’s deformed arm and hand would be all a new father would see. Instead, he saw beyond her obvious imperfections and focused on the beauty elsewhere. I wished for a moment that we all could be as authentic and true as a new, proud parent. Whether there was a discolored, swollen limb hanging without purpose or rogue electrical currents coursing through a brain, there was beauty in everyone.

Even this baby.

Even me.

* * *

As the weeks passed leading up to the delivery of our baby, I felt as if my life were mimicking an epileptic seizure. Time and again, I whipped full-force from one role to another. I jumped from physician to patient to expectant mother in a manner similar to the involuntary forceful movements of my limbs when I experienced a seizure. When I collapsed into bed each evening, my persistent dull headache and general exhaustion was reminiscent of the familiar post-seizure lethargy that marked many of my days. The obstinate ambiguity of what to expect for the little boy growing inside mirrored the uncertainty over which days would bring a new epileptic seizure. I fought back fear of how seizures affected our baby and tried to ignore the nagging truth that although I diligently followed all the rules of pregnancy and avoided alcohol, caffeine (mostly), the cat litter and soft cheese, our baby was at markedly increased risk of a birth defect or injury. I felt convulsed and fragile, tacking between invisible but tangible boundaries.

And yet, reveling in my dreams and excitement for motherhood, I was charged with expectation and anticipation. No matter which role I played – doctor, patient, wife or mother – I understood that unpredictability was as important and necessary to life as breath. I acknowledged the unsettled and unknown as things to discover rather than fear. A new and strengthening inner peace chased away my demons.

After years of fighting, I accepted that epilepsy is beyond my control. Patient outcomes are to some degree beyond my control. Our baby’s future was unpredictable but full of promise. Whatever I don’t know is OK. My life is OK. I embraced the uncertainty and relished the surprises that came with each day.

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Book Excerpt: Tragic Perspective

During the same time I prepared for epilepsy surgery, I worked as a pediatric resident at the University of Wisconsin.  Although the pressures of residency were challenging while I dealt with my own illness, the tragic perspective that I gained while caring for hospitalized children kept me focused and centered.  The following is an excerpt from The Sacred Disease recounting one of my most memorable nights in the PICU.

When pediatric residents were assigned to be on call in the Pediatric Intensive Care Unit (PICU), we stayed overnight in a small, cramped call room in the hospital and spent many sleepless hours standing over the beds of the smallest, most fragile patients in the Children’s Hospital. I was on call one night shortly before my scheduled inpatient stay for EEG monitoring.

Soon after I arrived to report for my shift, I was called into young Makayla’s room.

Makayla was a four-year-old with symmetric braids of thick black hair and glistening dimples that marked the middle of her cavernous cheeks. She was diagnosed with a pediatric tumor of the eye called retinoblastoma two years previously, shortly after her father passed away from the same disease. Makayla’s initial round of surgery and chemotherapy was successful, even though one of her bright, mahogany eyes was removed to rid her body of the tumor. Several months before her admission to the PICU, Makayla began complaining of pain in her hip and neck. A CT scan confirmed metastasis of her original tumor to several areas throughout her body.

When I entered Makayla’s hospital room, she was curled tightly in her mother’s lap. Her mother shielded her protectively with her long arms and strong shoulders. Though she cradled her baby in a loving embrace, a mother’s love wasn’t enough to reverse the slow decline in Makayla’s heart rate and shallow breathing. Makayla’s cancer had advanced inexorably enough that she was losing her grasp on life. A nurse was present to administer medications to ease her passage into another world. It would be my job to pronounce her dead.

Makayla’s mother wept quietly as she held her baby and monitored the florescent green line that recorded her heart rate on a monitor nearby. I stood discretely in the corner and tried to blend in with the wallpaper, feeling like I was eavesdropping on an intensely personal moment. A hospice nurse held Makayla’s mother’s hand. Her gentle sobs became louder each time the child’s fragile breathing slowed. Makayla’s bright fingernails, polished a fire engine red, seemed out of place in the somber room.

We stood that way for what seemed like forever. At last, Makayla took a final sigh to announce that she had fought long enough. The bouncing green line turned flat, and the child’s mother wailed and cradled her daughter close to her cheek and cried, “My baby my baby my baby.” I made a note in Makayla’s chart. Time of death: 12:03 A.M. Death was stronger than a pristine child with bright red fingernails and an insatiable cancer.

The familiar vibration of the pager on my belt abruptly pulled me from my thoughts. The story ended in Makayla’s room, but down the hall, the Med Flight team wheeled in another patient in need of acute care. I jogged down the curved hallway and found the attending physician talking quickly to the assembled group at the same time he used an inflatable bag and mask to breathe for an unconscious patient.

“Sixteen-year-old female who ran into a tree while skiing in a race approximately two hours ago. The victim was wearing a helmet but the helmet was crushed during headfirst impact with the tree. The patient was found unconscious and unresponsive on the hill and no longer breathing independently. She was intubated immediately and flown here.”

I studied the patient’s condition while I listened.

“In-flight management included ventilation and fluid resuscitation. So far, we haven’t been able to get any purposeful responses with stimulation. She has an open head wound with visible extruding white matter. Brain swelling and cerebellar herniation is a significant concern.”

As soon as the gurney stopped, a swarm of doctors and nurses flocked to the patient. “Let’s move her over.” Dr. Brady, the attending PICU physician, gestured to the larger bed in the hospital room.

“On my count. 1 – 2 – 3!”

We slid the patient as gingerly as possible to the bed that would become her home for the next three weeks. I inspected the devastated teenager lying before me as the energy and chaos in the room calmed.

Sarah was sixteen but she didn’t look a day over twelve, even when shroud with a cluster of medical devices, splints, and dried blood. A turban of bloody gauze clung to her head, and her neck and body were strapped to a rigid board to ensure stability of her spine. Sarah’s eyes were small slits of eyelashes hidden in a sea of swelling and bruises that had previously been her youthful face. There were several untouched locks of caramel colored hair that escaped and flowed down to her shoulders just outside the rigid confines of the cervical collar and head dressing. Looped purple pen strokes marked an unknown phone number on her hand, a remnant of the carefree teenage existence that was crushed to pieces along with her skull against that tree.

We hooked Sarah to the monitors and ventilator in the ICU and inspected her wounds while we waited for the neurosurgery team. She would need emergency surgery to stabilize the swelling in her brain and decompress her skull fracture. We watched her vital signs with trepidation.

Moments later, I tore my eyes away from the monitors around Sarah’s bed and turned to see a cluster of neurosurgeons jogging down the narrow path to the ICU. Their white coats floated behind them as if they were galloping on clouds as they pushed forward to the girl’s room. My shoulders relaxed and my breathing eased when the neurosurgery team wheeled Sarah down the hall to the operating room. Makayla would not live to see adulthood, but Sarah’s future remained a possibility. For this, at least, I was hopeful.

In one night, I met the Unimaginable, Unavoidable, and the Unexpected. Two beautiful girls’ lives altered or ceased while most of Madison slept. Weeping, I walked the lakeshore path to my car. I cried in frustration at how helpless I could be even when cast in the “helper” role. I also was ashamed of my obsession with my own illness. Seizures were frustrating and unpredictable, but I still woke up each morning to welcome the promise of a new day. Anticipation and expectation were still mine to enjoy. Makayla and Sarah now embodied only golden memories or fiery regrets of moments gone tragically awry. I dried my tears and lifted my chin to the sun as I filled my lungs with the cool, early spring air. It was a new day, and I was acutely grateful to be part of the world.

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Book Excerpt! From The Sacred Disease: A Memoir of Life with Epilepsy

For those of you who follow my blog, you may have noticed that my blog entries have dropped to, well, zero recently.  I could tell you that I’ve been busy or that life in general has been overwhelming but the real truth is much more exciting.  I have been writing a book about my journey with epilepsy.  I hope that by telling my story, others will feel more comfortable talking about seizures.  My book is entitled The Sacred Disease: A Memoir of Life with Epilepsy.  It will be published by Booktrope in late summer or fall 2015.  I plan to donate 100% of any profit I make from the book to CURE (Citizen’s United for Research in Epilepsy.)

Hopefully, you’ll want to buy the book just to donate to CURE.  In case I need to entice you, I will be releasing small excerpts from the book on this blog up until time of publication.  The following is the story of the night before my second son was born…

I was scheduled for induction of the delivery of our second son exactly on his due date. My second pregnancy was a bumpy ride of escalating medication doses, increasing seizure frequency, and several unplanned trips to the hospital. My obstetrician advocated for induction, hoping to avoid further complications. It was time to move on.

The evening before William’s scheduled birth was a cool, fall night. The wind blew strong gusts that sent the multicolored leaves galloping across our concrete driveway to accumulate in a pile in a ditch beyond. Inside, our house was warm, alive and festive. One of my husband’s high school friends was in town for the night and we invited him and his spouse over for an impromptu dinner.

When I slipped out to grab the mail, I peered into the windows filled with light and admired my smiling husband, Andrew, and our gregarious two year old. Alex sat on his dad’s lap and chatted animatedly with our visitors. The heartwarming scene inside the house energized me momentarily, but I knew I wasn’t myself.

I pushed myself to the limit that week. My globe-like belly made it almost impossible to sleep and I was working long hours in effort to tie things up at work before maternity leave. I knew that seizures would find me soon.

After our friends left, my husband and I cleaned the kitchen and packed our bags for the hospital. I was thrilled that it was almost – finally! – time to meet William. I took the chance to appreciate the beautiful evening for a last time when I took a bag of garbage to the end of the driveway. Our toddler was in bed, our company was gone, and everything was set for our new baby’s arrival.

I walked and listened to the familiar music of the leaves and the trees when an aura swiftly materialized. I told you so, Epilepsy seemed to taunt through the pulsing heat and confusion, you can’t deny that I am a part of you.

I saw Andrew at the other end of the driveway and walked to him slowly through the developing seizure. Later, Andrew told me that I walked to him with a blank stare and stood quietly before I abruptly became rigid. My unconscious body slumped into his arms and he carefully lowered me to the ground just as the jarring muscle contractions of the seizure began.

Andrew dragged my pregnant, convulsing body into the safety of our garage with effort. He placed my bobbing head on a pillow of recycled newspapers before he ran into the house to call 9-1-1.

* * *

A stranger’s face hovered over me as the fog cleared.

I was lying on the cold, hard floor of our garage surrounded by unfamiliar lights and sounds. Off in the distance somewhere, someone was calling my name.

“Kristin? Kristin? Can you open your eyes for me?”

I managed a one-eyed glance at the concerned faces around using all the strength I could muster. Just beyond the swell of my abdomen, I saw the furrowed brow of Andrew, who was leaning down to rearrange a blanket draped over my legs.

Where was I?

The unfamiliar man with a soft voice and a warm hand on my wrist introduced himself. “Kristin, my name is Dan. I’m from the Middleton EMS. Your husband called us tonight because you had a grand mal seizure that lasted about 6 minutes. We found you here on the floor of your garage when we arrived, and you’re starting to wake up now. We’re going to get you on to this gurney and head into the hospital to check on you and your baby.”

Baby? Confusion blurred to panic when I remembered my scheduled induction the following day. Tears welled, and strong hands lifted my wayward body off the cold floor and onto a cool bed. I was rolled into the back of the ambulance where the air was warmer and the lights were brighter. Moments later, the familiar silhouette of my brother appeared at the ambulance’s open back door. My brother’s face flashed red and white with the blinking emergency lights. He nodded his hello and reassurance before he went into the house to keep our son company. Andrew’s lips brushed my cheek, the bed was secured, and the truck rolled away.

William Kristofer Seaborg was born the following day, at 8:44 P.M., just an hour after the harvest moon dropped below a golden horizon. He was proportioned exactly the same as his older brother born twenty-seven months earlier: 8 lbs. 4 oz. and 20.5 inches long. His bald head was adorned with a thin layer of hair as fine and blond as the feathers that coat a new baby chick. His large eyes sparkled with hints of the bright blue that would remain. We were in love.

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A Mother Turns Her Experience with Epilepsy Into a Learning Opportunity For All

Over the years, I’ve discovered that that the more I write about epilepsy, the more I have the chance to meet patients and families who are working to change many of the common misconceptions about seizures.  From a group in China that is working to raise awareness about epilepsy in Hong Kong, to the father of a young girl with a rare epilepsy syndrome, the collective work that we are doing to de-stigmatize epilepsy seems to be slowly making its mark.  

A few weeks ago, I received an email from Laura Gray, a mother whose oldest son was recently diagnosed with epilepsy.  Instead of giving in to fear and frustration, Laura took the opportunity to write a feature article for a medical journal to educate others about epilepsy.  Laura was excited to share both her article and personal story here as well.  Read on as Laura shares her family’s story in her own words.

My Son: The Epileptic

Being a single parent of a 12 year old boy is never easy but when that boy has a lifelong condition like epilepsy things can be really tough. I am that mother and my son John was diagnosed with the condition when he was 8. This is our journey.

As a child

From the age of about 4 or 5 I used to notice that John would occasionally ‘space out’ for a couple of minutes. It was as though he couldn’t hear me and wasn’t aware of his surroundings. He’d stare into space and smack his lips. At the time I put it down to his age. He was a young boy with a vivid imagination and I thought he was just lost in his own little world. The rest of the time he was perfectly healthy and because I associated epilepsy with the tonic clonic seizures we see on TV, the thought that his space outs could be linked to that never crossed my mind. It wasn’t until he had his first seizure at the age of 8 that I made the link.

The first fit

The first time John had what many would describe as a ‘traditional’ epileptic fit we were at a local park. It was a hot day and John had been running around for a long time. As I sat on a bench chatting with another mother I saw him fall to the ground and as I rushed over I saw that he was jerking and convulsing on the ground. I was utterly terrified and had no idea what to do. My initial thought was that he was having some kind of heart attack but the other mother, who coincidently had a sister with epilepsy, immediately asked me if he suffered from the condition. Thankfully he came round after a few agonizing minutes and he seemed OK but we still rushed to the hospital to get him checked out.

The diagnosis

At the hospital neurological doctors asked me if all kinds of questions. Had he suffered a recent head injury? Was he on any kind of medication? Had anything like this happened before? It was only when I mentioned his occasional space outs that they seemed confident that John had epilepsy. Still, they ran blood tests and an EEG before finally confirming the diagnosis. At the time I wasn’t sure how I felt. After the shock of seeing him collapse I was overwhelmed with relief that he wasn’t dying but the prospect of having to manage a condition and those fits terrified me. When we got home I did some research and tried to explain the condition to John but at 8 years old I’m not sure how much he took in. He knew something had happened in the park and that he’d had to have tests. He seemed to understand that he’d need to take medicine daily now. But all he was interested in was getting home to play on his computer game.

Life goes on

Since the initial fit 4 years ago John has suffered 6 more tonic clonic seizures. Each time I feel the familiar rise of panic in my chest but with each fit comes a greater acceptance of the condition and more experience in handling them. I put John in a position where he can’t hurt himself, remove any dangerous objects from around him and wait for it to pass. We work together to try and identify what triggered the seizure – usually it seems to be when he becomes overtired so ensuring he gets enough rest is important. John copes admirably with his condition. He is extremely organised and responsible when it comes to taking his medication doesn’t dwell too much. Recently he asked if he could go scuba diving with a group of friends when they visited the beach. Immediately I had to remind him of the dangers of his condition. If a diver were to have an epileptic fit underwater it would almost certainly be fatal. At times when he is unable to do something I can see the gravity of his condition overwhelm him and that’s hard. But he tries to stay positive and I am extremely proud of him.

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Amparo: A Physician in Mexico with Epilepsy

Although she lives hundreds of miles away, listening to Amparo’s story was like looking in a mirror.   As a 29 year-old physician in Mexico City, Mexico, Amparo is also learning how to live with her epilepsy while balancing a family and a career.  Amparo was diagnosed with left temporal lobe epilepsy at age 19 but began having seizures years earlier, before she understood what a seizure was.

At the age of 14, shortly after Amparo started secundaria school (similar to American high school), she began having bizzare events where she suddenly lost consciousness for short periods of time.

“I would be in class and suddenly fall asleep or black out,” she remembers.  “When it was time to go to another class, my friend would wake me up and I would begin again.”  Although she had persistent and recurrent episodes throughout secundaria school, Amparo avoided giving too much thought to her sudden and repeated lapses in awareness.

After Amparo completed high school, she chose her career path and began medical school, as is standard practice for those who study medicine in Mexico.  As a 19 year-old medical student, she was required to attend classes that began at 7 each morning and continued until 3 PM each afternoon.  After a short break, classes would begin again at 4 PM and continue until 8 at night.  Amparo found the rigorous class schedule taxing on both her mind and her health.  During the second semester of medical school, Amparo’s professor asked her a question and she was unable to speak or respond.  The professor encouraged her to schedule an appointment with a neurologist for evaluation of possible seizures.

The neurologist who met with Amparo “asked a lot of questions” and helped identify an event where she sustained significant head trauma as a young child which may have been the inciting incident for her seizures.  An EEG confirmed complex partial epilepsy with secondary generalization.  Amparo was started on the anti epileptic medication levetiracetam but she did not experience any improvement in her symptoms.  In the months that followed, she tried primidone, which made her feel persistently drunk, carbamazepine, topiramate, and valproic acid.

Despite her recent diagnosis of epilepsy and frustrations with medication trials and failures, Amparo did her best to continue in medical school and perform at the level of her classmates.  She excused herself from class when she experienced a seizure but then returned to her work promptly.  She became discouraged, however, when one of her professors quietly urged Amparo to reconsider her decision to be in medical school.  “Because of your illness, you won’t be able to finish medical school and become a doctor,” her teacher warned.

Amparo confided in her perpetually supportive mother.  “Mom, they tell me I’m not able,” she complained, considering what her other career options may be.

Amparo’s mother provided the strong and unweilding voice that she needed.  “Amparo, you’re here.  You’ve already made it to medical school.  You must stay and get your degree.” Amparo also was reassured by the strong support of her younger sister, who assumed the role of eldest child when Amparo had a seizure, and her father, who worked many hours to pay for treatment of Amparo’s epilepsy.

A short time later, Amparo informed her doubting professor and other medical school faculty members that she wouldn’t leave school before her graduation.  They would learn never to question her abilities again.

Me

Despite her commitment to continuing her studies, Amparo still suffered from persistent seizures.  Eventually, she had to drop some classes in the academically rigorous fourth year.  During her 5th year of medical school (which is similar to Internship in the U.S.), Amparo was expected to work in the hospital for long hours every day.  Her teachers and mentors and spoke with her and elected to take a year off to focus on achieving seizure control.  During this time, she took the classes that she had to discontinue the previous year and tried her hardest to rest and recover.

Although Amparo fared relatively well during her year away from medical training, her seizures returned almost immediately when she returned to school.  Early in the academic year, she suffered a prolonged seizure, or status epilepticus.  In the weeks that followed, Amparo visited her neurologist and was told that epilepsy surgery her best option.  A MRI confirmed a seizure focus deep in her left temporal lobe.   During the pre-surgical testing, Amparo was warned that she may have difficulty remembering names or words to describe objects after her epilepsy surgery.

Amparo had a left temporal lobectomy in March 2009.  Even though she felt great pain as she woke up from anesthesia, she also was enormously relieved to immediately recognize her physician.  As she recovered, she worked with a neuropsychologist to help regain her speech and language capabilities.   Amparo enjoyed two years free from seizures after her surgery.  She completed medical school and began to consider what type of medicine she wished to practice.

Lobectomy

Scar over left temporal lobe after surgery

My sis and me after my surgery

Amparo and her sister after surgery




After two years of seizure-freedom, Amparo talked to her neurologist about discontinuing her anti-epileptic medications.  With his approval, she began a slow wean off her medications with excitement.  But as she weaned to half of her previous dose of medications, Amparo’s epilepsy returned.  She sustained another prolonged episode of status epilepticus and was admitted to the Intensive Care Unit in a medically-induced coma.  Amparo had another prolonged seizure in the days that followed and remained in the hospital for one month.  She reports that she walked the brink between life and death during that hospitalization.  “It was awful.”

Amparo was started back on anti epileptic medications and now suffers approximately one complex partial seizure every two or three months despite her three daily medications.  Because her partial seizures sometimes lead to generalized tonic-clonic seizures, she has sustained a variety of injuries over the years.  She has broken her finger, lacerated her eyebrow, cut her lip, and injured her elbow.  The visible and invisible scars left from injuries related to seizures have affected Amparo deeply.

“Sometimes when I look in the mirror, my reflection causes pain in my heart.  It just doesn’t seem fair.”

However, despite her trials, Amparo continues to maintain a healthy sense of perspective.  “There are always people who have it worse than I do,” she said.  “Others with epilepsy don’t have the opportunity to have the career that I have, or even the family that I enjoy.  I have a problem but I also have lots of opportunity.”

Still, Amparo states that fear of when the “next seizure” constantly haunts her.  “I count each day from a seizure.  My family watches me closely the day of a seizure but as time progresses they back off.  But I am always wondering when the next one will come.”

Amparo also acknowledges that the public perception of epilepsy in Mexico and worldwide is still significantly different than the truth.

“People with epilepsy in Mexico talk less about their disease because it’s better if others don’t know if they have it.  They think that if they don’t talk about it, they will be less affected.

“People in Mexico think that seizures occur because epileptics have some kind of venom. Patients are tied to their desks because they have epilepsy. We have to make a change here. It’s difficult, but we have to do it.

“I feel like I have the responsibility to help make epilepsy acceptable,” she said with determination. In effort to educate others about epilepsy and its associated stigma, Amparo is currently completing her Masters Degree in Bioethics. The title of her thesis is “Discrimination that Suffer Mexican Persons Who Have Epilepsy in the Field of Work.” She chose this theme because she knows what it’s like to feel discrimination, but she also wants to teach others to rise above their seizures and work toward their academic and professional goals.

“I still have problem remembering names of people I have just met and sometime of people I have known for years,” she said. “But even though I have epilepsy, I had had surgery, I have won a wonderful life full of important friends and family that help me, and I have learned that we are always capable of new things.”

Please pass it on.

Art

Artwork that Amparo created after epilepsy surgery

 

 

Family

Amparo, her sister, and parents