For nearly 10 years, Kate suffered from severe epileptic seizures and lived with life-altering side effects from her many medications. In this video and in her first-person story below, Kate shares her story about how an experimental treatment has changed her life.
Thanksgiving of 1999 was going to be a great day. My mom was coming home from the hospital after having surgery, and our entire family would be together for a big dinner that afternoon. It was shaping up to be a great holiday—that is, until I had my first seizure. I had the seizure at about 7 a.m. but I don’t remember anything except waking up in the local emergency room with a terrible headache and not being able to move my left side. I later learned that although the paramedics who responded to my dad’s frantic call thought I might have had a stroke, I actually had a temporary condition called Todd’s Paralysis from the seizure. I met my first neurologist that day. He reassured me and my dad that kids my age—13— who have a seizure may never have another one and that I wouldn’t need to take medication unless I had a second seizure.
That year, I was an A student who played volleyball, basketball, soccer and softball. I had a very close circle of friends. I played classical piano and was in a rock band. I wanted to go to Julliard to study film scoring after high school. All of that changed when the next seizure happened 20 days later, at breakfast. I was talking with my mom about the math calculator I needed for school and the next thing I knew, I was waking up in the emergency room again. I was told that I fell off a stool and hit my head on the tile floor during the seizure. This time, the neurologist started the first of many anti-seizure medications, EEGs, MRIs, CT scans, blood work, PET scans, SPECT scans, MEG scans and other tests. They have never discovered a cause for my seizures.
The frequency of these seizures increased over time, as did the character of them. During the bad tonic-clonic seizures, I didn’t breathe well and often turned blue. Although medications seemed to control them to some extent, I was having multiple “absence” seizures an hour and up to eight complex-partial seizures daily, which left me tired and with frequent migraine headaches. Some medications caused me to gain weight, others to lose it. At one point, I was down to 80 pounds. I’ve tried 12 different anti-seizure medications in the past 10 years, and at one point, I was taking more than 40 pills a day. All of them caused fatigue, memory issues and mood changes. My grades fell and I had many seizures in school. All of my friends except one or two drifted away. They were young and didn’t understand what was happening to me. My family learned to help me avoid the things that seemed to make the seizures more frequent, like stress, fatigue and flashing lights. But I stopped playing piano and eventually had to stop playing sports.
After about a year, my local neurologist sent me to Children’s Hospital Boston’s Epilepsy Program, in Dr. Blaise Bourgeois’ Division of Epilepsy and Clinical Neurophysiology, where doctors worked hard to adjust my medications. In July of 2003, I had brain surgery to determine the exact spot where the seizures started. The plan was to remove this tiny piece of my brain causing the seizures, which could cure me! But the seizures were much worse while I was in the hospital; I had many tonic-clonic seizures each day and I stopped breathing during several of them. Unfortunately, the doctors determined that there was more than one area in my brain starting the seizures, so they couldn’t remove the epileptic brain tissue. This was a disappointing, difficult time.
After that, medications didn’t seem to help much and seizures were taking their toll on me and my family. In January 2005, I had surgery to get a vagal nerve stimulator in a muscle in my chest that’s attached to the vagal nerve in my neck. Some people with seizures have had success with this device helping to control the seizures. It didn’t seem to work for me, although my parents thought that it sometimes shortened the seizures. I now was sleeping with a pulse oximeter on my finger that would sound an alarm when I had seizures in my sleep and didn’t breathe well. My parents kept oxygen in our house to use when this happened, and the shelf in our kitchen that used to hold cookies was looking more like a pharmacy. My parents were afraid to leave me alone, so someone was with me constantly. Through all this, my Children’s doctors always gave us hope that something would eventually work.
In March of 2006, Dr. James Riviello told me about a new treatment, called transcranial magnetic stimulation (TMS), that his colleague, Dr. Alexander Rotenberg was introducing to Children’s as an experimental treatment for drug-resistant seizures. Dr. Riviello explained that TMS was non-invasive (I wasn’t interested in any more surgeries!). We went to speak with Dr. Rotenberg and with an expert on TMS, Dr. Alvaro Pascual-Leone, at Beth Israel Deaconess Medical Center. They explained how TMS worked, and how it may help patients like me.
I agreed to try TMS and began the treatments slowly. After the first few sessions, I began to have more and more seizure-free days—and most of the seizures that I did have were shorter. Then I started to have seizure free WEEKS!
Dr. Rotenberg took over my care when Dr. Riviello moved away, and he has refined the TMS treatment protocol to what works best for me. I have 15 TMS sessions (about 45 minutes each) every 12 weeks. I have had more than 170 treatments so far, which means that I’ve probably had more TMS treatment for epilepsy than anyone else in the world. In the three-and-a-half years on TMS, Dr. Rotenberg has tapered me off five of my anti-seizure medications. I’m only taking three now, and he plans to continue to taper me off them, slowly, one by one.
It’s now been 10 years since that Thanksgiving I had my first seizure. My family and I will be forever grateful for the wonderful care I have received at Children’s from every doctor and nurse, technician and secretary. I know that the hope they gave me during the darkest days is why I’m where I am today. My last witnessed seizure was in April–that’s seven months ago! I’m taking college courses and getting A’s again. My world is expanding and I have a future to plan for.