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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Eliza, Purple Ribbons, and the Path to a Cure

When Eliza felt like it was time to do her part to raise awareness for epilepsy, she took matters into her own hands.

Literally.

As a recent high school graduate, Eliza took a year off before starting college so that she may have epilepsy surgery.  During her free time in a year otherwise filled with tests, hospital stays, and escalating anxiety, Eliza made a plethora of purple ribbons and informational flyers filled with facts and statistics about epilepsy.

“Wear this for me,” she asked, as she handed the ribbons out to friends and family members, then as she distributed them to local stores and businesses.  When Eliza’s friend, Julianna (see “Julianna and the Full-Circle Journey” for Julianna’s story) announced that she was going to study in Ecuador, Julianna took the purple ribbons with her to Ecuador as well.

Even after surgery was complete and Eliza started college at Hampshire College, Eliza continued her purple ribbon campaign.  During a final project relating to epilepsy for her arts education class, she handed out more purple ribbons and statistics about epilepsy to her classmates.  Now, Eliza reports that she sees a rainbow of purple ribbons on student’s backpacks at school, on neighbor’s coats at home in Vermont, and she dreams of them in homes in Ecuador.  It seems that small amount of purple satin can be enough to raise awareness over thousands of miles.

Although Eliza has had epilepsy since she was three years old, it wasn’t until recently that she was willing to talk about her seizures.  For most of Eliza’s formative years, she was embarrassed by her recurrent grand mal seizures and she tried as hard as she could to pretend that they weren’t there.  Even when Eliza had a generalized seizure in school and the other children were curious, she would shy away from discussing the event and move on to other things as quickly as possible.  Eliza’s parents responded by making sure they raised their daughter without allowing the fear of epilepsy lead to limitations.  Although seizures were a constant threat, Eliza knew the normal childhood joys of being able to swim, ride a bike, play soccer, and hang out with friends.

Looking back, Eliza credits her parents as much of the reason why she has been able to function so well in life despite her epilepsy.  “My parents never treated me differently nor implied that I couldn’t do something because I had seizures,” she remembers.   “Epilepsy was never part of the conversation.  They considered it a lot, but they did a really good job making me feel normal.”

Eliza’s neurologist is also part of why she has been able to do so well. “She recognizes who I am and has always treated me as a whole person, not just a person who has seizures.” For Eliza, the combination of a supportive family and an understanding doctor has made it much easier to get through the challenges of growing up with epilepsy.

The last seizure Eliza had at school happened when she was in sixth grade, then her seizures started to occur only as she was waking up in the morning.  Eliza was forced to miss school secondary to seizures but her illness was no longer as visible to her classmates as it had been before.  Eliza remained very quiet about her epilepsy for fear of others judging her until she was a sophomore in high school and when she began to consider moving away for college.

“Suddenly the gravity of moving away from home hit me,” she explained.  “What if I had a seizure in my dorm as I was waking up and there was no one there to help me?  What if I had a seizure when I was walking alone on campus?”  Eliza realized it was time to make a change.  Antiepilepsy drugs had never completely controlled her seizures and had led to some challenging side-effects.  Eliza knew that her options for better seizure control were a trial of a low-glycemic diet, placement of a vagal nerve stimulator, or epilepsy surgery to remove the seizure focus in her brain.

Eliza applied to college with her peers and got into Hampshire College – her top choice of schools.  Although she was excited and eager to move on to her next phase in life, Eliza deferred her freshman year on the last day possible for deferral.  It was clear to her that she should have epilepsy surgery to try to find a cure for her seizures during her year off from school.

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As Eliza came to grips with her epilepsy and learned to accept the uncertainty in her life as she grew, she also gradually became more comfortable talking about her seizures with others.  When she was 16, she started by painting a picture for the Expressions of Courage art contest for the Epilepsy Foundation.  When her drawing of an earth and the word “hope” written in multiple languages was chosen for the November page in the Expressions of Courage calendar,  Eliza had a tool to gradually step out and speak to others about her epilepsy.  Eliza remembers a teacher from high school as one of the first and most supportive people she spoke openly with about her epilepsy and the possibility of epilepsy surgery.  And once she made the decision about surgery, she began distributing purple ribbons.  “I went from being embarrassed and afraid to share to a complete reversal,” Eliza remembers.

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Eliza had epilepsy surgery on March 29, 2011.  Since her surgery, she has been seizure-free and now has been weaned off half of her antiepilepsy medication.  Her neurologist has plans to eventually wean her off all of her medication if she continues to remain seizure-free.  When I asked Eliza how it feels to be off some of her medications, her response was simple.

“It’s almost overwhelming at times.”

She’s excited for the possibility to be off medication but nervous at the same time.

Eliza is back at school and studying chronic illness and foreign languages. She states, “I hope to use my experience with epilepsy to make other’s experience with chronic illness more positive.”

At the end of our conversation, Eliza left me with one last beautiful image.

“Last year at the end of March, one year after my epilepsy surgery, my friend Julianna, my mom, and I went to the Epilepsy Walk in Washington D. C.  I’ve never felt so not alone.  There were literally thousands of people there and all the people with epilepsy were wearing purple T-shirts and all the people that were friends, family members or supporters wore white T-shirts.  It was amazing and uplifting to walk amongst a sea of purple T-shirts and to realize how prevalent epilepsy is.”

Eliza is not alone.  We are not alone.  Please pass it on.




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Christine

I have known Christine for what feels like a long time.  Our children, who are now eight years old, used to attend preschool together.  I saw Christine at various birthday parties, classroom celebrations, and milestone events over the course of three years when my son and her daughter spent their days at the bright, angular school with halls filled with the music of children that buzzed with laughter and joy.

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Even though I’ve had countless conversations with Christine at parties and preschool events, it wasn’t until I posted the first entry to One In Twenty Six revealing “My Story” that I heard about her history of seizures.  Christine posted a comment on the blog and wrote, “. . .while I have not had a seizure in over 15 years, my middle-, high school, and early college years were plagued by them. Monitoring sleep, food intake, and stress levels are just second nature now, but auras are always scary reminders that there’s a sleeping electrical storm that could break at any time.”  Christine states that the week she saw the post, she was drawn to reading the blog because she recently had an interaction with her colleagues at the University of Wisconsin, where she teaches technical writing.

After hearing a colleague recount a story where he suddenly lost consciousness and fell off his bicycle, Christine suggested that he should be evaluated for possible seizures.  When the colleague scoffed, Christine pressed on, adding that she had an intimate knowledge of how unpredictable and variable seizures can be, since she had lived with epilepsy for many of her adolescent and adult years.

Christine shared her story with me while we had breakfast on a grey Monday morning that promised only more cold, slush, and snow. “After I told the group about my history of epilepsy, the room suddenly became silent,” Christine remembered, the irritation visible in the smoldering fire of her dilating pupil.  “No one knew what to say. The stigma associated with seizures is still very much there,” she said.  ” Something’s got to change.”

Christine’s journey with epilepsy began when she was an active middle school student at a parochial school in northern Michigan.  Never one to be idle, she was involved in a myriad activities and pushed her body to the limit.  Christine first noticed events where she felt an overwhelming sense of sleepiness that she couldn’t shake even if she was able to get adequate rest.  Then she started to notice paroxysms of involuntary movement of her right hand, evidenced by sudden streaks of irregular writing across her papers at school where her hand jerked out of voluntary control and was suddenly guided by the brewing electrical currents within.  Eventually, when Christine was working her hardest to help prepare for the middle school graduation ceremony, she succumbed to a grand mal seizure.  Her diagnosis of epilepsy ensued and she began treatment with Tegretol.

Christine reports that once she started and increased the dose of her antiepileptic medication, she went from being a straight-A student to “sleeping through a year of high school.”  She was no longer able to participate in a variety of activities because the medication side-effects were too great.  Her grades suffered significantly as well.

After muddling through a sleepy 18 months on Tegretol, Christine was switched to Depakote, which allowed for fewer side effects and better seizure control.  She noticed that she had to exercise almost all the time to avoid gaining weight while taking Depakote. Early in the initiation of Depakote therapy, Christine was warned by her physician that while she was on antiepileptic medication, the risks of potential birth defects would likely preclude her from ever having children.  Too young to worry about it too much at the time, Christine took her medication every morning with hope in her heart that her seizures would one day be a part of the past.

In some ways, Christine got her wish. When she went years without seizures or auras in college, she talked to her neurologist about weaning off Depakote.  She was able to become free of medications before she became pregnant and delivered her first child.  Emmy was perfect, with sandy blond hair, chocolate brown eyes and an expressive smile that could light up the darkest room.  Her daughter’s life seemed unmarred by her mother’s history of seizures.

Then when Emmy was three, Christine and Emmy were walking out of the library together one spring afternoon.  They were smiling at the warming sun and looking forward to the day they would enjoy together.  Suddenly, Emmy’s hand slipped out of Christine’s hand.  Christine turned around and found her daughter spread out, quaking, unconscious, and helpless on the sidewalk.  Knowing that she needed help, Christine had no choice but to leave her daughter alone for a moment while she ran inside to call for an ambulance.

Emmy’s seizure was not associated with a fever or an illness or any of the typical culprits that may lead to benign seizures in children.  In discussion with Emmy’s physicians about use of possible antiepileptic medications to prevent future seizures, Christine states that she was “appalled to find that many of medications that we use in children today are very same with the debilitating side effects that were used for me twenty years ago.”  Currently, Emmy is not on any medications and is doing well, but Christine reports she lives in fear of the day that things may change for both of them.

Christine describes her experience as having a “brush with epilepsy” and states that she has been fortunate to not have seizures and medications affect her everyday life.  Still, while the grey changed to silver outside on a Wisconsin Monday morning, I could see slivers of how a history of seizures and years of mind-numbing medication can haunt you like a ghost forever.  Christine admits that she still monitors her sleep and stress levels diligently.  While she used to be “on the path where she needed to be in control of everything,” now she has learned to let things slide.  She also admits that she dreads the hormonal changes in life more than most women.  Where puberty and menopause are headaches to some, they may mean resurgence of seizures to women like Christine and Emmy.

Christine looks forward to the day when she can talk about epilepsy in a room full of colleagues and not be met with awkward silence.  The more we talk, the more we understand.  Please pass it on.

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Photo source: http://the-second-half-of-my-life.com/2010/09/16/mothers-daughters-9/