When Evan Lesh began experiencing odd symptoms three years ago, a diagnosis was impossible to pin down. His sweating, shaking, and nausea led some doctors to conclude that he had developed severe anxiety. When medications didn’t help his symptoms, however, he started having tests done. He visited an ear, nose, and throat specialist; had an MRI taken; and used a heart monitor for a week. All of it was inconclusive.
“No one knew what the problem was,” said Lesh, a 29-year-old video game programmer for ArenaNet. “They could never catch any symptoms because they were too erratic, so no one could say anything for sure.”
In early June, however, Lesh got the closest he had come to an answer when he had an unexpected grand mal seizure, which hit him first thing in the morning while in bed at his home in Renton. His girlfriend and roommate were there, and they called for help and kept an eye on him until the EMTs arrived. Lesh, who lost about 20 minutes of memory, woke up to find EMTs in the room.
“I don’t remember it at all,” Lesh said. “The seizure itself affected everyone else more than it affected me.”
The experience itself was terrifying, but it also provided an answer to Lesh’s problems: The three years of unexplainable symptoms had likely been tiny seizure symptoms — or auras — and could be treated as epilepsy.
A year ago, Lesh would have been sent across Lake Washington to see an epileptologist — a neurologist who specializes in epilepsy — because none of the Eastside hospitals had the specialists or the equipment necessary to properly treat epileptic symptoms. In November 2017, however, Dr. Emily Pei’en Fan and Dr. Nicholas Jonas joined Overlake Hospital in Bellevue as the Neuroscience Institute’s epilepsy experts, making it possible to better meet the demands of a growing Eastside population.
“Having (an epilepsy) specialist is one of those gaps that Overlake identified over time,” said Dr. Fan, who has been studying epilepsy intensively for the last three years. “We didn’t have any on the Eastside at all, so all patients were being referred to the Westside. We’re trying to fill that gap in our community.”
Though Overlake’s newly offered services have yet to evolve into a full-fledged epilepsy center, they have been successful in ensuring that Eastsiders experiencing epileptic symptoms see a specialist in a timely manner.
After his first — and only — big seizure in June, Lesh was referred to Dr. Fan to better understand why he had a seizure and how another one could be prevented. The piece of his brain that has been identified as the most likely cause of his auras and seizures, Lesh said, is a cavernoma.
A cavernoma is an abnormal cluster of vessels, and Lesh didn’t know he had one until an MRI revealed it about eight months prior to his grand mal seizure in June. The neurologist suggested that the cavernoma is likely something he has had since birth, though it did not cause him any problems for most of his life. As he has grown older, however, the cavernoma likely began disrupting his normal brain activity, which resulted in the symptoms he experienced for the last three years.
He and his doctors would prefer to avoid surgery to remove the cavernoma: It’s located in his left memory center near his motor controls and short-term memory. A less-invasive solution is ideal.
Dr. Fan has worked with Lesh to help find him the right medication and dosage to keep him seizure-free.
The best way to determine whether a medication is working is by conducting an electroencephalography (or EEG), a non-invasive test that measures brain activity by attaching electrodes to the scalp.
Lesh has experienced the test twice now at Overlake: The first was a routine EEG, which takes 20 to 60 minutes and is done in the hospital; the second was an ambulatory EEG, which takes 24 to 48 hours and is spent at the patient’s home.
“It’s rare that we can catch an (epileptic) episode during the routine EEG,” said Dr. Daniel Fosmire, another neurologist at Overlake. “The odds are small that during a 20-minute period (a patient) will have some kind of episode or symptom. The 24-hour ambulatory EEG increases the duration of the study tremendously, and it also records brainwaves when they’re asleep. This is important because sometimes, when patients are transitioning between wakefulness and sleep, abnormal electrical discharges in the brain — seizures — can occur.”
While the electrodes are attached to a patient’s head, the brain produces approximately one page of data every 10 to 15 seconds. Dr. Fan and Dr. Jonas, who have been performing about one ambulatory EEG a week since January, pore over the thousands of pages of brainwaves to look for anything out of the ordinary. This may look like sharp spikes or slow waves — anything that differs from standard brain activity for that person, which is determined in advance.
For Lesh, the ambulatory EEG was conducted to monitor whether his current dosage of Keppra — one of the most common drugs used to treat epilepsy — is keeping potential seizures under control. If the drug is working correctly, the epileptologists should not see any abnormal brain activity when reviewing the data produced by the EEG.
“If I wasn’t on the Keppra, I would expect something to probably happen in 24 hours,” said Lesh. “Six months ago, if I had a 24-hour EEG, I definitely think there would have been abnormal activity.” In his first month of taking Keppra after his seizure, Lesh’s symptoms have taken an extreme turn for the better: He has gone from having three episodes (auras) a day to only two in a month.
For others, the ambulatory EEG is helpful in establishing whether a patient is actually experiencing seizures. The disease affects every brain differently, explained Diane Lee, the EEG technologist responsible for attaching 24 electrodes to Lesh’s head prior to his ambulatory EEG.
“(Seizure symptoms) could be a stare. It could be throwing something out of your hand when you don’t want to. Some seizures are unique to that person alone.”
For this reason, many people — like Lesh for three years before his big seizure — don’t realize that the odd symptoms they experience are in any way related to seizures, and are therefore hesitant about taking medication for epilepsy, said Fosmire. The ambulatory EEG allows epileptologists to identify whether symptoms are in fact connected to seizures; if they are, the neurologists have evidence of symptoms and brain activity that a patient might have been completely unaware of. This, in turn, makes patients more comfortable taking a medication, like Keppra, even if they have never knowingly experienced a seizure.
Sudden seizure onsets are surprisingly common for adults, said Lee. Epilepsy is the fourth-most-common neurological disorder in the United States, with 4 percent (1 in 26) of Americans developing epilepsy at some point in their lives. Anyone can develop epilepsy at any time, and often the causes are difficult to identify. For some adults, sudden seizure onsets can be the first clue that there is a tumor present somewhere in the brain. For others, factors like stress, lack of sleep, or poor diet can accumulate to push a person over his or her “seizure threshold,” an unknowable limit that every person has — which is why having specialized doctors on the Eastside is crucial. Before Overlake started treating epilepsy patients in January, referrals were getting jammed up at other hospitals, said Dr. Fosmire.
“Before we started having the ambulatories done here, we had to send them out to other facilities, and it would take three or four months — or longer — to get the study done, because there was such a high capacity of need,” he said. “Now we can get (the studies) done much more quickly here, (because) we have fellowship-trained epilepsy specialists who can read the studies and then try to correlate symptoms with the findings on the EEG. It’s increasing care dramatically.”
The wait to have an ambulatory EEG done for Eastsiders like Lesh is now closer to a couple of weeks.
Overlake is on its way to being a full-fledged epilepsy center. The specialists — Fan and Jonas — hope to make headway in the coming months toward becoming a center of excellence for epilepsy by developing an inpatient unit for ambulatory EEGs, which are currently only done at a patient’s home.
Having the capacity to monitor certain patients for extended periods of time while in the hospital would allow the epileptologists to treat severe cases that need to be watched closely. It would also help them to treat patients who need significant changes to his or her medication: Someone can be taken off their medication for observation only in a highly controlled environment, with medical professionals on-hand. This kind of study is impossible until the inpatient unit becomes a reality.
Luckily for Lesh, it does not appear as if more-intensive measures will be necessary. His test results came back with no abnormalities detected, meaning the Keppra is doing its job and he can avoid a risky surgery to remove the cavernoma in his brain, according to his doctors.
Should Lesh experience more difficulty with seizures in the future, however, he can rely on the quickly expanding services at Overlake to provide follow-up care — right from his own backyard.
Epilepsy by the Numbers
- 65 million people worldwide have epilepsy, a chronic disorder that is defined by recurring and unprovoked seizures.
- 80% of epilepsy patients live in developing nations without access to medication needed to prevent seizures.
- 60% of epilepsy cases have no known cause.
- 60 different types of epilepsy exist.
- 4% of Americans develop epilepsy at some point in their lifetimes.
- 10% of Americans will have at least one seizure at one point in their lives.
Data courtesy Epilepsy Foundation and Epilepsy Action Australia
How an ambulatory EEG Works
1. EEG technologist Diane Lee begins applying electrodes to Lesh’s scalp. Red dots on his forehead mark where several of the 24 electrodes will be placed.
2. Green bars signify electrodes that are attached and properly monitoring brain activity. Red ones are electrodes that have yet to be applied.
3. Attaching the electrodes to his head requires the use of collodion, also known as “airplane glue,” according to Lee. The glue will be washed out of his hair once the EEG is over.
4. All 24 electrodes are attached and working well. Wires are wrapped at the back of Lesh’s head so that he doesn’t accidentally catch one during the 24-hour study.
5. Lesh holds the box that the electrodes connect to. The box makes it possible to record Lesh’s brainwaves during the study.
6. Finally, Lesh’s head is wrapped to protect the electrodes from damage or movement for 24 hours.