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.

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.

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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

 

 

 

Charlie Claire

After struggling to get pregnant, Kristin and Jason were delighted to learn that they were expecting twins. Even though she was carrying a double burden of babies, Kristin sailed through her pregnancy and delivered a healthy boy, Jackson, and a healthy girl, Charlie Claire, just two weeks prior to their due date. The North family rejoiced at the addition of their two blond, cherubic babies.

The first two days of the twins’ lives went exactly as planned. Both Jackson and Charlie fed well and seemed to be adjusting to newborn life. But on the evening of her second day of life, when Charlie Claire’s father was feeding her a bottle, he wondered if her color appeared a little “off.” It was hard to tell in the dimly lit hospital room, but Jason wondered if his new daughter was the color of ominous thunder clouds instead of the expected baby pink. Before Jason and Kristin could think more, the episode was over.

The following morning, however, Charlie had another brief spell where her appearance altered. This time, Charlie was taken quickly to the nursery and was found to have low oxygen levels. Even though Jason had already left the hospital to get things ready for the twins’ expected discharge, a nurse quickly informed Kristin that her new baby had “bought herself a 48-hour stay” in the Neonatal Intensive Care Unit (NICU).

Throughout the day, Charlie Claire had many similar dusky spells. The NICU provider on duty noted that Charlie’s eyes repeatedly drifted toward the right with each spell. Eventually, Charlie’s parents heard a diagnosis that they never expected but that would become alarmingly familiar as time progressed. After monitoring Charlie for the entire day, the NICU provider ventured, “I think she’s having seizures.”

Shortly after this revelation, an EEG confirmed the presence of seizures. A subsequent MRI revealed a malformed region of Charlie’s brain. Charlie was started on the anti-epileptic medication phenobarbital and the spells stopped almost immediately. After over a week in the hospital and careful adjustment of phenobarbital to acceptable levels, Charlie Claire was sent home to join her healthy twin brother.

Things went smoothly initially after Charlie’s hospital stay and seizures began to feel like a distant memory. But when she was two months old, Charlie’s parents noted that she had brief episodes of unusual movements that seemed like muscle spasms. Charlie’s mother recorded the events and showed the video to her neurologist at a routine visit. Unconvinced the episodes were seizures, he arranged for another EEG.

Kristin vividly remembers the day that she took Charlie for her first outpatient EEG. As she sat quietly in the waiting room, she tried not to worry when the EEG technician rushed out of the room and explained that she was going to get the neurologist. Within moments of the doctor’s arrival, the EEG technician again poked her head out of the room and spoke with urgency to Kristin, “The doctor wants to talk to you.”

Charlie’s EEG revealed that she was having almost continuous seizures. She was admitted to the intensive care unit immediately and was started on a series of different antiepileptic medications. Charlie was treated with Keppra, Dilantin, Tegretol, and her phenobarbital levels were increased. Still, she continued to have seizures. Finally, one of her neurologists conceded, “we’ve done everything that we can do. Charlie will need to have brain surgery for treatment of her seizures.”

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One month later, Charlie’s seizures were characterized as infantile spasms (IS). Her diagnosis of the developmentally detrimental IS placed increased urgency on the proposed brain surgery. Still, her doctors warned that surgery was too high-risk until Charlie was six months old. Holding their struggling two-month-old in their steady arms, Kristin and Jason prepared for a long wait.

Months later, Kristin and Jason remember the staff at Virginia Commonwealth University hospital (VCU) as being welcoming, gracious in their explanations, and hopeful while speaking about Charlie’s future instead of focusing on the challenges of today. Charlie had surgery to resect the malformed area of her brain in her right temporal-parietal-occipital lobe in March 2011. Immediately after her surgery, Charlie’s infantile spasms disappeared.

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 But on Mother’s Day 2011, Charlie’s parents noted that she started having another type of event where she would briefly look to the right, flutter her eyelids, giggle, and then return to her normal demeanor 30 – 45 seconds later. This time, Charlie was diagnosed with the more benign simple partial seizures and started treatment with Lamictal. A repeat MRI and EEG confirmed the remaining presence of a malformed portion of her occipital lobe. Charlie had a second resective surgery in the fall of 2011 to remove the remnant of irregular brain tissue. Unfortunately, her second surgery did little to change the nature of her partial seizures.

     

Charlie will be 4 years old in October. Her parents report that by all accounts, she is a normal, active, and happy little girl. Like most young girls, she has memorized all the words and characters in the movie Frozen. She also fosters a fierce bossy streak that lends a charming “sassiness” to her demeanor. Her parents were filled with pride when they took their twins to a birthday party and another parent expressed disbelief upon hearing Charlie’s history of two brain surgeries and epilepsy. “I would never know!” the other parent effused. “She doesn’t look any different than any of the other children!”

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But despite outward appearances, Charlie still has her share of challenges to face as she grows. She works with a physical therapist, occupational therapist, and speech therapist five days a week to help her maintain and acquire new skills. Her depth perception and vision is affected by the visual field defect acquired through epilepsy surgery.

Charlie’s parents report that her positive outcome has been directly affected by her twin brother, who has been Charlie’s greatest teacher. “All along the way, Jackson has been present to challenge Charlie,” Kristin reports. “Anything that he is doing, she wants to be doing.” Jackson doesn’t remember the periods of time when Charlie was critically ill in the intensive care units, but he was fascinated by the hat of wires she wore during her recent inpatient stay for a continuous EEG.

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While raising twins always has it’s challenges, Kristin states that her experiences with Charlie Claire have taught her a lot of things about parenting.  “I’ve learned to always trust your instincts about your own child,” she said. “When Charlie started having her seizures, I thought that something was wrong and there was.

“I have also learned how to consistently go to bat for our daughter. I’m determined that Charlie will never fail due to lack of effort on our part.

“Charlie has also taught me not to get ahead of myself. Often I have worried about things such as what if she doesn’t pass the next test, what if she doesn’t do well in kindergarten. . . I have been forced to learn to enjoy Charlie today and every day.”

Kristin’s voice is hopeful as she summarizes her family’s journey with Charlie Claire so far. “We didn’t know what to expect. Everyone said, ‘we don’t have a crystal ball,’ now people at birthday party have no idea what she’s been through. We could have only dreamed that we’d make it this far.”

You can learn more about Charlie Claire’s journey on Kristin’s blog: http://www.charlieclaire.com

Please pass it on.

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Merrily: An attorney with epilepsy

The year was 1973 in a small, rural town in northern Texas. Merrily, at the tender age of fourteen, was mourning the recent loss of her mother only months before. One summer night she joined her friends and neighbors at a local party and reveled until the early morning hours. Shortly after she returned home and tucked herself into bed before dawn, her brother found her seizing. Merrily only remembers waking up in the small community hospital.

News of Merrily’s mother’s recent death had travelled quickly through her small hometown. Merrily remembers that the hospital staff questioned her about drug and alcohol use, suspicious that such behavior had brought on the seizure. At least partly because of this, Merrily was not offered a period of observation, evaluation, or any diagnostic tests after her first generalized seizure. Instead, it was assumed that the seizure occurred secondary to a chaotic lifestyle.

Despite her community’s ill-informed fears, Merrily succeeded through high school and went on to college. Six years later, a sophomore in college, she was sitting alone at her kitchen table after work. Abruptly, Merrily found herself on the floor. She was sore with full-bodied muscle aches and confused. Later she would learn to recognize the identical sensations as those she felt as she was recovering from a grand mal seizure. Since she didn’t know how to interpret the event at the time, she moved on with her studies.

Merrily moved from college to law school, where the course work and competition required long hours of studying. While she was studying late one evening with her husband, she succumbed to another seizure and woke with emergency medical personnel standing over her. After this event, Merrily was referred to a neurologist who finally diagnosed her with epilepsy. Merrily was given a prescription for Dilantin but the side effects of Dilantin affected her ability to think clearly and caused significant fatigue. As a second year law student, she couldn’t afford to feel anything less than her best. Later, she was switched to phenobarbital, which she tolerated well but interfered with her future plans to have children.

After Merrily graduated from law school, and thought seriously about having children, she went back to her neurologist and asked to wean off her anti epileptic medications. She hadn’t had a seizure in two years, and she was feeling well. Both seizure and medication free, over the ensuing six years, Merrily delivered three perfect daughters. Fully immersed in her life as a mother and her practice as a lawyer, Merrily was sure that epilepsy was a thing of the past.

But as time passed and her daughters grew, Merrily developed episodes that she thought were panic attacks. The brief episodes were characterized by severe anxiety and foreboding that would appear for ten to fifteen seconds and then pass. Eventually, in 2012, almost thirty years after she stopped taking anti epileptic medication, Merrily had an event that changed her life yet again. She was sitting in her office over lunch, listening to a webinar and watching the slides flip on the screen. Suddenly, Merrily started to feel “funny” with abdominal discomfort and a rising heat that ascended to a tightness and pressure in her head. She struggled to read the words in front of her. She knew the clustered letters were language but she couldn’t make sense of the words. The next moment that Merrily remembers is when she woke on her office floor with trembling muscles and full body pain.

“After thirty years, epilepsy wasn’t even on my radar. Still, I knew what happened immediately.”

After her seizure in 2012, Merrily again established care with a neurologist and learned about how treatment and evaluation of epilepsy had changed in the interval thirty years. She realized that her self-diagnosed “panic attacks” were actually simple partial seizures.   Through diagnostic testing and further evaluation, Merrily was found to have a developmental venous anomaly (DVM) on the left side of her brain near the junction between the frontal and parietal lobes. Although some experts believe that Merrily’s DVM is unrelated to her seizures, others wonder if previous small areas of bleeding from her venous anomaly could have created a seizure focus.

Since Merrily’s epilepsy resurfaced in 2012, she has tried a variety of medications with various degrees of success. In many cases, the side effects of the medications were intolerable. “Zonisamide made me depressed and stupid,” she said. “Trileptal made me want to eat everything in sight, gave me daily headaches, and made me slow. Lamotrigine worked for a while but not as well as I had hoped.”  Despite multiple medication trials, Merrily continues to persevere and work successfully as a lawyer at a financial firm in Texas.

Merrily reports that one of the most bothersome symptoms that has appeared with her most recent experiences with epilepsy are her struggles with speech and language. “When my seizures started happening again, I was having speech and language issues. I didn’t know if this was occurring as an aftermath from a big seizure or secondary to a smaller seizure. I would be sitting in a meeting, trying to describe something, and then wouldn’t be able to find the right words. I could not get across complex idea and would have to use simple, inadequate language that was uncharacteristic of me. I also started to do weird things and reverse sounds of two words together. When I tried to say hot dog, it would come out as ‘dot hog.'”

She started working with a speech therapist and has gradually seen her speech improve. Despite her day-to-day reality of medications and side-effects, she has not told many people other than friends and family about her epilepsy. She found that the stigma surrounding epilepsy remains shortly after her seizure in 2012.

“After my grand mal seizure in 2012,, I wasn’t able to drive for several months. At lunch with colleagues, I shared my recent diagnosis of epilepsy and looked around the table when I was done talking. No one said a word. They didn’t know how to react.”

Eventually, someone spoke up and said, “the only thing I ever heard was to keep a seizing patient from swallowing their tongue!”

Through her journey, however, Merrily has learned many things.

“I have learned not to doubt myself,” she said. “All those years I was having small seizures, I thought I was overreacting to my symptoms when actually there was a neurologic reason for my sensory events.

“I have also learned to seek help from professionals when I need it. There are many things that go along with a diagnosis of epilepsy — trouble with memory, cognition, emotional and social issues, and considerations for the workplace that I didn’t originally understand.

“I have learned to seek information when my questions were left unanswered. I want to know if there is anything else that can be done about this other than these horrible medications. I don’t hesitate to email doctors who have done studies that I have been interested in.”

And finally, and perhaps most importantly, “I have learned to be patient with myself. This is something that I’m not always that good at, but I try.”

Merrily has also realized that the more she talks about her epilepsy to others, the more she is able to correct lingering misunderstandings amongst friends, colleagues, and family members. She, too, has come to the conclusion that the more we talk, the more we understand.

Please pass it on.

Merrily with her 90 year-old father, Thanksgiving 2012.

Merrily with her 90 year-old father, Thanksgiving 2012.

 

 

Alex and George: Living a Full Life Despite Seizures

Twin brothers Alex and George share many things.  They share their love for the martial arts.  They both have achieved the level of black belt in tae kwon do.  They also love to ski, both near their home in Wisconsin and on the significantly more challenging slopes of Colorado.

Alex and George also share their diagnoses of epilepsy.

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Alex and George snowshoeing in Colorado

 

 

 

The tale of Alex and George was told to me by their mother, Maureen, who talked with a combination of emotion and pride over the bluetooth phone in her car while she drove her slumbering teenage sons back from vacation in Michigan.  Every so often, a mumbled “hhhmph” of assent or “harrumph” of question emanated from the teenagers in the back of the car.

Maureen started our conversation by making sure that I knew how far her boys had come despite the challenges that they had faced with epilepsy.  “My mother socializes with a large group of women in the Michigan area and she is holding a fundraiser to raise awareness about epilepsy next week,” she said.  “One of the goals of the fundraiser is to show the important and relevant realities of the disease and how it affects the whole family.

“On the invitation to the fundraiser, my mother and I wrote:  Since their diagnoses 10 years ago, George and Alex have taken about as many medications that are available, have had a myriad of tests,  George had intracranial EEG monitoring, and George had brain surgery.

 Despite all that, they are active, funny, engaging teenagers.”

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Alex, Maureen, and George at Pope Farm Park in Madison, WI

Maureen’s journey with epilepsy began on a Christmas ski trip in 2003 when 5 year old twins Alex and George were sitting outside having a snack in between runs down the hill.  While sitting quietly in the afternoon sun, George started acting differently and stopped responding to external stimuli.  By the time his parents realized something was wrong, he succumbed to a generalized seizure.  The ski patrol office was right next to where George collapsed, so he was promptly put in an ambulance an taken to the local hospital, where a CT scan and all diagnostic studies were normal.  George was discharged from the hospital the next day and he returned home with his family seemingly unscathed.

But George continued to have seizures.  He established care with the Children’s Epilepsy program at Children’s Hospital of Phillidephia and was started on tegretol.   When George’s family moved to the Milwaukee area, his care was transferred to the Children’s Hospital of Wisconsin, where his neurologist recommended an evaluation for possible resection of the focus of his seizures.  George had surgery for placement of intracranial electrodes and then was monitored in the epilepsy monitoring unit at Children’s Hospital of Wisconsin.  His seizures were found to originate from the left temporoparietal region of his brain, the same portion of the brain that houses, among many other things, the circuitry needed for speech and language.

“I’m a speech pathologist,” Maureen stated.  “When Dr. Zupanc  told me where George’s seizures were coming from, it was a low point in this journey.  I knew that if they resected that region, he would never fully regain his language again.”

Instead of having a resection of a seizure focus, George had a vagus nerve stimulator (VNS) placed, which has been helpful to reduce the number of seizures.  He still has approximately one to two seizures a week, despite taking three anti-epileptic drugs.  George continues to ski in Snowmass with his family with the help of a program called Challenge Snowmass that pairs a skier with disabilities with a ski buddy.  George clips into the chair lift and uses a climbing harness while skiing to keep him safe in case he would have a seizure while skiing.  George has also achieved a black belt in tae kwon do and enjoys swimming with his family at the beach — though never without a life jacket.

When George and Alex were 7, in the midst of George’s evaluation for possible surgical treatment for his epilepsy, Alex began to complain of intermittent periods where he “couldn’t see.”   The visual complaints were determined to be focal seizures and before long, Alex had his first generalized seizure.  With both children undergoing treatment and evaluation for epilepsy, Maureen felt like she was being pushed to her limits.

Alex’s focal seizures didn’t always generalize, but they often did.  He began having about one to two seizures a week, but his seizures didn’t seem to be progressing as quickly as George’s had.  Because she was now struggling with recurrent seizures in two boys, Maureen decided to put both boys on the ketogenic diet when they were eight years old.  “I was bound not to fail for lack of compliance,” she said, “so I measured every morsel of food for one year.  The worst part of it was the daily grind and the limited repertoire of what we could eat.”

Maureen remembers Alex’s last seizure like it was yesterday.  “I took Alex to Michigan in December for a holiday music performance and he had last seizure in the lobby of the Interlochen Music School Auditorium.  After that, we were able to sit down and enjoy the performance.”  Not long after that, Alex stopped the ketogenic diet and was switched to Depakote.  Alex has been on the same dose of Depakote for the past seven years and has not had a seizure since.  His EEG his still active, but his clinical seizures have stopped.

Maureen has realized that raising two boys with epilepsy has not only changed her perspective about seizures, but molded her view of life in general.  For better or for worse, she’s gotten used to watching her sons’ seizures and supporting them through them.  “I’ve seen George have 95% of his seizures.  After the initial panic is over, I’m the one consoling everyone else.  I’ve seen it before and I’m used to it.  George had a seizure on the first day of middle school and the case manager was a wreck.  I was the one that had to calm her down.”

And having Epilepsy as an additional family member has also given Maureen and her family a chance to appreciate the simple things and celebrate the small successes.  She reflected, “It’s pretty easy to get bogged down in the worry about the future.  Every parent gets worried about their kids.  It’s 1000 times worse when you have a child with a medical problem or some sort of special needs.  But, you need to look at every day and the success of each day and see that they accumulate and trust they’ll find their way in the world.”

When I asked Maureen how she’s managed with a life of uncertainty, she replied, “You have to take every day and prepare for the worst, and hope for the best.  It’s a balance between worrying about what’s going to happen and being thankful for every good day that we have.”

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Alex at Cascade Mountain, Wisconsin

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George at the UW arboretum