In the middle of her chemistry lab, Kaitlin Hardy ’12 suddenly fell to the floor. When she woke up, she was inside an ambulance. It was another seizure — a symptom of her epilepsy.
Epilepsy is a brain disorder characterized by repeated, spontaneous seizures.
The brain sends and receives messages using nerve cells called neurons, which communicate with each other by firing electrical impulses.
A seizure is a disruption of this electrical communication due to an uncontrolled, continued firing of neurons in the brain, leading to a temporary release of the excess electrical energy into surrounding areas of the brain. This excess energy can affect enough neurons to momentarily stop them from functioning.
Although the seizures are often recognized by dramatic situations such as falling, losing consciousness, foaming at the mouth or jerking limbs, some seizures may last only a few seconds, depending on the amount of energy discharge.
In fact, an epilepsy patient may suffer 50 to 100 seizures in a single day without even realizing that they had experienced a seizure, while some seizures may simply result in a nervous tic without any loss of consciousness.
“Anyone can have a seizure. It’s just a matter of the threshold and the extent of the disruption that differentiates one seizure from another,” according to Dr. Justin Montanye, a neurologist from Cayuga Neurological Services.
The Epilepsy Foundation estimated that there are currently almost three million cases of epilepsy in the United States, with some 20,000 new cases diagnosed each year. Still, the clear cause of and treatment of epilepsy is not well known.
“It’s just a guess and check thing. There is no cure, there’s no way of knowing which medication to use other than regularly going through [an] electroencephalogram scan [a recording of electrical signals from the brain by attaching electrodes to the patient’s scalp] to measure my brain irregularity,” Hardy said.
An EEG scan is a recording of the brain’s electrical signals detected by electrodes attached to the patient’s scalp.
The scan helps neurologists determine the origin of the electrical disruption. If the disruption affects the whole brain, however, the scan looks completely different.
While medication can be prescribed to reduce the frequency of seizures, neurologists suggest surgery in extreme cases. During the procedure, the surgeon localizes the disruption and removes that chunk of brain in order to prevent the likelihood of seizures in the future.
The Comprehensive Epilepsy Center at Weill Cornell Medical Center is currently investigating treatments by surgery. In a procedure known as responsive brain stimulation, for instance, surgeons implant a small computer into the patient’s brain. When this device detects a seizure, it immediately sends a counter-shock to block it, minimizing the electric disruption and the chance of a seizure.
“For the most part, if the right medication is found, it will work. No medication can guarantee, however, freedom from seizure for rest of one’s life,” Montanye said.
In fact, after going through numerous medications and the following side effects, Dan Nicholls ’11, a forward for the Men’s Ice Hockey team, said he did not suffer a seizure for two years once he found the right medication.
Finding the right medication, however, is easier said than done, according to both Hardy and Nicholls.
Nicholls, for instance, lost 20 pounds, woke up with a giant rash all over his body and was diagnosed with a possible tumor as a result of previous medications.
Likewise, Hardy experienced short-term memory loss from her first medication, nausea and vomiting from her second and at some point even had to be hospitalized due to the amount of medication she was taking.
What frustrates students like Hardy and Dan even more in the midst of helplessness, confusion and embarrassment, however, is the fact that even a place to ask for help is not clear to them.
When Hardy sought help from the student disability services, the best they could do was to warn her teachers about seizures.
But when the seizure actually happened, the warning could do only so much, as the whole class went to chaos. When Hardy came to, students were unsure about what to do and kept asking, “Are you OK? Do you need to sit down?”
Even in emergency rooms, medical personnel can do little aside from waiting for the patient’s seizure to stop.
“There are lots of misconceptions, [but] there is very little [applicable] medical research being done and it’s a hard thing to tell anyone new about your condition.”
This is part of the reason why Hardy founded FACES: Facts, Advocacy, and Control of Epileptic Seizures. The goals of FACES include erasing stigma surrounding epilepsy and seizures, helping those with seizure disorders, instructing those around them of emergency first aid and, ultimately, fundraising for epilepsy research.
“Right now, I can’t drive a car, I can’t do gymnastics and I don’t like being alone for a long time. But there are those in much worse condition than I am, so you’ve got to keep getting up and keep moving forward,” Hardy said.
Mind over matter: Kylie Repasy ’12 speaks at FACES in the Willard Straight Hall International Lounge on Monday evening, while Dr. Justin Montanye and Michelle Fish of Student Disabilities Services look on.
