Focal seizures in childhood
When I was a child growing up in Texas, I wondered what was wrong with me. I fell when my mom walked me to daycare, then struggled to stand up and walk. I tried to be normal like other kids and play outdoors, riding bikes and scooters. But I would lose control of the right side of my body, sometimes out of nowhere.
Getting ready for school when I was older was so difficult. I had to wait for a seizure to be over to get dressed or brush my teeth. I tried to play sports, but I had seizures if I was startled by pain from a basketball hitting me too hard. Every month for most of my life, I had seizures without epilepsy relief.
Struggled to control focal seizure symptoms with medications
A doctor had diagnosed me with focal seizures when I was 7 years old, but she said I would grow out of them. I didn’t receive any treatment, and they got worse, though I always tried to hide them. Sometimes, I would lose consciousness, usually after several seizures in a row.
When I was 17, I experienced my first generalized seizure, which involves the whole brain at once. It was a Saturday morning, and my body shook the entire bed. It woke up my boyfriend (and future husband), who saw me foaming at the mouth and rushed me to an ER. While testing didn’t indicate epilepsy, the seizure stopped once I received medication through an IV.
I tried a number of seizure medications after that, but none provided long-term seizure control. Five years later, I was pregnant and experienced a generalized seizure while waiting for a prenatal checkup. I was taken to the hospital. This time, a neurologist moved me to an Epilepsy Monitoring Unit, where an electroencephalogram (EEG) finally detected my abnormal brain activity.
The doctor added another medication, and that one laid me out. I was on five different anti-seizure medications after having my son.
I swear I missed the first five years of my child’s life because I slept so much. I missed watching my son ride a bike for the first time — I was asleep. I was just not involved in anything. It felt like a losing battle.
The first steps toward neurostimulation for epilepsy
The epileptologist (epilepsy specialist) I see now discussed the NeuroPace RNS® System as a potential treatment for epilepsy relief in February 2018. They told me how RNS would target the place in my brain where my seizures originated and stop them before they started. I was 28 years old, and it was my first time hearing of a focal seizure treatment other than medication.
We began the testing journey at a comprehensive epilepsy center to see if I was a good candidate. It involved a weeklong EEG, and imaging tests such as magnetoencephalography (MEG). The goal was to pinpoint which parts of my brain caused my seizures and learn how they affected my body.
In August 2018, I had brain mapping surgery, a procedure that looked inside my brain to locate the exact source of my seizures. A week later, doctors placed the RNS System in my head. Surprisingly, I wasn’t scared. Doctors shaved my hair in certain areas on my head but that grew back quickly.
The recovery was almost painless, and I treated small pains with Tylenol. Two weeks after being sent home, I went to get my incision staples taken out. That was mostly pain-free, too.
Using the RNS System and identifying seizure triggers
I was kind of surprised to find out how smart and easy the RNS System is. I take my laptop and hold the wand over the device once a day to get information about my brain’s electrical activity.
Then I take a few minutes to send the information to my epileptologist every week. I see my doctor every six months instead of every three months now. It’s really interesting when my doctor shows me how my brain activity changes when the device steps in to control epilepsy.
My doctor told me I could swipe my magnet whenever I felt any seizure activity to make an EEG recording. Most of my seizures are so fast that I barely get a chance to register them before they stop.
If I can’t reach my magnet in time, I use a seizure diary on my phone. That way, even if I have an aura, or a “small” seizure, I can let my doctor know at my next appointment.
My doctor can also cross-reference entries with data from my RNS System to identify seizure triggers. Triggers for me are lack of sleep, stress, and hormonal changes, as well as being startled or caught off guard.
Decreased seizures and fewer medications for focal epilepsy
The RNS System isn’t meant to replace medications. But after the first year, I was feeling healthy enough that my doctor was able to lower the drugs that kept me from feeling good.
I’m now down to a single low-dose medication at night, and I’ve had an astonishing decrease in seizure activity.
Ever since I’ve had the RNS System, I haven’t had a generalized, full-blown seizure — only a few severe seizures due to a traumatic life experience. Since the device recognizes my brain’s unique patterns, my doctor was able to adjust the stimulation to try to reduce the severity of future seizures if similar events occur. I’ve never been able to feel any stimulation.
Experiencing life-changing RNS benefits and improved energy
My life with drug-resistant epilepsy has changed for the better on so many fronts. I’m not sleeping constantly and missing out on everything anymore. We go for walks around our neighborhood and go fishing, and I enjoy playing basketball and getting on the trampoline with my son. I feel alive, not like a zombie. My mood and memory are better, too.
My seizure triggers don’t affect me like they did before the RNS System. I’m scared of wasps and used to lose control of my right side when one flew by me, but that hasn’t happened to me in over a year. The device also helped me feel more confident about going on trips with my family.
Texas State Laws say that if you’ve had a seizure in the last six months, whether in your sleep or awake, you cannot drive. I’m looking forward to the day when my doctor is comfortable enough to say that I can drive. In the meantime, to improve my behind-the-wheel skills, my husband gifted me with an introduction course for driving on a track.
With my newfound energy and epilepsy relief, I strive every day for excellence in our family landscaping business, as a mother homeschooling my 13-year-old son, and in my work-from-home position grading artificial intelligence projects. I really enjoy and soak up the present time I get to spend with my family.
For me, the RNS System was worth it
The outcome of this surgery is so profound. If I had to do it again to have these results, I would.
I’d tell anyone considering the RNS system to be patient and work closely with their doctor. It takes time to get the results you want, and you have to do your part.
One of the biggest blessings for me is that I finally have answers and know for a fact that I actually have epilepsy. Before I got the RNS System, the questions that surrounded me throughout my childhood and the uncertainty of what was wrong hindered me mentally and emotionally.
This burden being lifted off my shoulders is something that I am so grateful for. I believe in myself more than ever.
Take our quiz to see if the RNS System might work for you.
*Every person’s seizures are different and individual results will vary
