My name is Erika Dubreuil. I’m 28 years old and I was diagnosed with epilepsy when I was 14, just two weeks into my freshman year of high school. I had my first grand mal seizure on a sunny Sunday morning. I was sitting on my laundry bin trying to decide what to wear.
All I remember is slowly tipping over. My sister found me and when I woke up I was in my parents’ bedroom. I was having seizures back to back so my parents took me to the ER. The doctors did some tests, including a spinal tap. I remember my parents standing by my hospital bed when the doctor came to tell us that I had epilepsy. I didn’t know what epilepsy was and I saw my parents crying so I knew the prognosis wasn’t good. I assumed that the doctor would prescribe me some medicine, [Erika] I would take it and everything would be fine. Unfortunately, this wasn’t the case at all. I went to see a local neurologist. After a few visits and ineffective drug concoctions, it was apparent he had exhausted his knowledge of epilepsy. He finally referred me to a specialist at Stanford.
At first my seizures weren’t that bad; I had three or four grand mal seizures a month but mostly I had absence seizures. But at school it seemed that I had become a pariah because other kids were scared of me. The world that I had known was steadily alienating me. My teachers put me in the back of the class and my physical education teacher wouldn’t allow me to participate in swimming activities because she didn’t want to have to rescue me in the event I had a seizure in the pool. Some of my friends abandoned me and the others I angrily drove away because I didn’t think that I deserved friends – I thought they were better off without me. For a long time I even shut out my own family.
By sophomore year in high school my seizures were progressively worse. I was experiencing 20 to 40 petite mal seizures and as many as five grand mal seizures a week. I was having seizures during my sleep as well, too many to count. I couldn’t take the added stress from school so I went to a therapist who deemed me too mentally unstable to continue attending.
At 17, I underwent three brain surgeries: the first two were for testing, the third they took out a section of my right frontal lobe. After the surgery my neurologist told me that they couldn’t take out all of the seizure-affected areas because they were worried that they might disable part of my speech and motor skills. But my symptoms went away and for one year and nine months I was normal again. I went back to school, got a driver’s license and a part-time job. I was at a stop light a few blocks from my house when my seizures started back up. I remember setting my car keys down and will never forget that hopeless, sinking feeling sweeping over me once again. The seizures were now stronger and more frequent than they were before my surgery. Ultimately, my employer made it extraordinarily inconvenient for me to continue working due to my seizures.
I’ve been examined by every neurologist at Stanford, UCSF and UCLA and have been dispensed every regular and experimental medication in existence. The side effects have had the most impact on my life, though. I’ve suffered from scalp hair loss, increased body hair, sensitivity to bruising, losing gaps in time from a few hours to a few days, behaving much like a zombie.
Recently, I applied to get another brain surgery when I was 26 and was denied because I was having so many seizures that even the most sophisticated high-speed brain scans couldn’t tell where exactly the seizures were coming from. Also, since I already had brain surgery, they couldn’t get any definitive results from the tests that were required in order to proceed with the surgery. The neurological community told me that even if I did qualify for brain surgery, they might have better technology five to ten years from now and they couldn’t undo what they took out. My neurologist suggested waiting five years for better technology to emerge. As a last ditch effort I received a surgically implanted vagus nerve stimulator (VNS). I had my VNS put in December 2011. It’s been over a year and my seizures have gotten worse – not better. It’s rare that the VNS makes seizures worse but it’s too early to tell. It can take up to two years for the VNS to take effect. So, what is it like to live with seizure disorder? I fall a lot and make frequent trips to the ER with major lacerations, bruises or concussions. There is no warning….I fall like a ton of bricks. I break a lot of things….mirrors, doors, furniture, and toilets when I fall. I can’t make a single sound without having the people around freak out and rush to my assistance. Even though I know they mean well, it’s aggravating. And I have suffered from major depression which is normal for people with epilepsy. When I was 16, I tried to commit suicide. I wanted to give up on life. I thought that I didn’t deserve to live and everyone would be better off without me and I thought that they would understand why I did what I tried to do. I had every prescription that didn’t work for me at my disposal. I had a number of epilepsy meds that didn’t work and I took them all. What I didn’t count on was that I would have a seizure; vomiting all of the pills up saving my life. The next day was just like any other day except for the fact that my mom gave me a hug for no particular reason and told me that she loved me and I knew that everything was going to be ok. I have learned that everyday is a blessing because everyday can be my last. Every seizure I have, even the smallest ones I think, “Is this it? Is this going to be my last seizure?” and there are so many things left unsaid, so many things left undone. I try not to go to bed angry because there might not be a morning. That’s a reality that I deal with everyday. The reality that I live with doesn’t allow me to go to the bathroom by myself, I can’t cook my own food in case I burn myself, I can’t even walk from one side of a room to another without someone by me in case I should fall. I’m not eligible for in home support services (IHSS) because it is all “stand by” and because I’m technically capable of doing it myself. I’m capable of functioning on my own – however, this is all irrelevant to them. I am capable, yet I am incapable because of my seizure disorder.
Ultimately, the cure for my affliction is dependent on the funding CURE receives, in order for neurologists to be able to conduct their research. At the moment, my life is on standby. Please help CURE raise the funds that are so desperately needed.