This article first appeared on The War Horse, an award-winning nonprofit news organization educating the public on military service, war, and its impact
Jack Somers struggled to get his bearings.
He didn’t recognize the place. He didn’t recognize the people in the crowd.
It was 2010, and he served as a Marine Corps captain based out of Camp Pendleton, California. He’d commanded an antipiracy platoon off the Horn of Africa and walked the bomb-riddled perimeter of an outpost in a Taliban-dominated part of Afghanistan.
But at the finish line of a turkey trot back in his hometown of Trout Valley, Illinois, he felt lost.
“It’s still a blur,” Somers told The War Horse. “I still don’t remember the second part of the run.”
He’d been back from Afghanistan for less than a week.
It soon happened again, this time while he ran solo in downtown San Clemente, California:
“I have no idea where I am—no idea why I’m running,” he said he thought to himself. “Is someone chasing me?”
He didn’t tell anyone about it—he “just moved on”—but on the first day of a training exercise leading into his next deployment in 2011, he began to understand there was a problem. “I seized,” he said, “just fell back and started convulsing, and apparently pretty violently.”
That was his first grand mal seizure. Nick Bengtson deployed with Somers on both missions. A couple of months after he returned to California, Bengtson went out drinking one night. The next morning, he took a pre-workout supplement. On his way to the gym, he collapsed outside his Camp Pendleton barracks.
He woke up in the hospital.
In each case, the men said the Marine Corps treated the first seizure that landed them in the hospital as a possible fluke. Grand mal seizures, in which people lose consciousness and their muscles contract violently, can occur when people overexert themselves, drink too much, or become extremely dehydrated, according to the Mayo Clinic. Medical professionals assigned both Somers and Bengtson to six months of light duty and required them to stay home during the next deployment.
Then it happened again. To both of them.
“Here I’m just speculating, but you never know whether someone has been deployed in an area where there’s some kind of exposure to infection or to a toxin,” said Dr. William Gaillard, a neurologist and president of the American Epilepsy Society. “This is the Erin Brockovich story, right? So now, when 10 people get cancer on a street, you’ve got to start wondering what’s wrong with the street.”
Bengtson fell out the second time after another night of drinking. And during physical training one day in 2012, Somers suddenly cried out loudly. He fell backward to the ground and started to convulse.
“I woke up after in the hospital,” he said, “and I knew my career was done for.”
By this time, he’d heard about two more Marines from his unit of 29 people with “something going on strange that looked like a seizure-related event.” They had deployed with him and Bengtson both times.
None of the four interviewed knows why the seizures started, when the next one will occur, or whether they’ll ever stop.
Though military neurologists expected a wave of seizures after the wars in Iraq and Afghanistan, they couldn’t have known that this generation’s injuries would differ from those of previous generations. And there does appear to be a surge in seizures—but they’re not what experts originally expected. Both mild traumatic brain injuries caused by blasts, rather than blunt force, and post-traumatic stress emerged as the silent, signature injuries of these wars, and the seizures associated with each can differ significantly from those associated with injuries of past wars, and, possibly, with each other. Add to the mix seizures potentially caused by toxins from burn pits and other hazards, and easy answers can be difficult to find.
Understanding the seizures provides the key to diagnosing them—and to treating them.
‘That Wasn’t Me’
Marines and Navy medics from two companies went on back-to-back deployments, first with the 11th Marine Expeditionary Unit in 2009 and 2010 for exercises. Somers commanded a visit, board, search, and seizure platoon to address pirate attacks in the Horn of Africa region. They then deployed to Afghanistan in 2010 as part of security forces.
In Afghanistan, Somers led a platoon of 60, including Bengtson. They first went to Forward Operating Base Delaram II, where things were quiet. Twenty-nine of the 60, including the two of them, went on to the improvised explosive device-infested southern tip of the Sangin district in Helmand Province.
“The locals did not like us,” Somers said. “They were very clear. We really didn’t feel safe at all.”
The seizures or seizure-like episodes started sooner for Somers and the three others from his unit of 29, who all went to Sangin, than they did for Marines who deployed at the same time to Marjah with another company in his unit.
Beyond that, their cases were similar in that they did not appear to follow any particular pattern for any particular injury or exposure. And until their cases are looked at concurrently, it’s unlikely that a pattern will emerge, said Dr. William Gaillard, a neurologist and president of the American Epilepsy Society, in an interview with The War Horse.
“Here I’m just speculating, but you never know whether someone has been deployed in an area where there’s some kind of exposure to infection or to a toxin,” he said. “This is the Erin Brockovich story, right? So now, when 10 people get cancer on a street, you’ve got to start wondering what’s wrong with the street.”
Gaillard has not been involved in any of the Marines’ cases.
Traumatic brain injuries (TBIs) and post-traumatic stress (PTS) can lead to seizures. Seizures can follow exposure to pesticides, chemical warfare agents, industrial chemicals, pharmaceutical drugs, and traumatic events. And seizures have also been connected to benzene, a chemical known to have been produced by the large burn pits in Iraq and Afghanistan, including at Marjah, where the living was dirty, as well as in Sangin.
Still, none of the Marine veterans interviewed for this story can pinpoint anything specific: They weren’t diagnosed with severe PTS or concussions. None of them remembers a chemical exposure that might have affected them.
All four of the Marine veterans interviewed said they got at least a little banged up while they were in the service: ears rattled, heads bumped hard, a few possible concussions—including one from a bar fight. But no one can single out any one blow, such as from the blast following an explosion, as a likely culprit.
“That would actually make sense,” Bengtson said. “That wasn’t me.”
In Afghanistan, an improvised explosive device (IED) hit a vehicle behind his.
“I definitely sniffed whatever fertilizer was in the air,” he said, referring to an ingredient often used in the explosives. But he wasn’t hurt.
‘Years of Inappropriate Treatment’
As service members returned from Iraq and Afghanistan with both PTS and TBIs, their injuries became more complicated. Physical injuries cause electrical activity in the brain that sparks the seizures, according to the Cleveland Clinic. Those are typically epileptic seizures. But other seizures—nonepileptic seizures—appear to be related to psychological trauma, such as witnessing the death of a fellow Marine. These are real seizures, but they are not caused by electrical activity in the brain. Diagnosis and treatment are different for epileptic versus nonepileptic seizures.
In a 2015 study, VA researchers found that of all veterans diagnosed with seizures and treated with antiepileptic drugs at VA, 16% had been diagnosed with a TBI, and 24% had been diagnosed with PTS.
But for veterans who deployed after 9/11 and who were treated for seizures, 53% had been diagnosed with a TBI and 70% with PTS.
After the Vietnam War, VA saw a rise in veterans with epileptic seizures because of blunt-force injuries, said neurologist Aatif M. Husain, VA’s Epilepsy Centers of Excellence national coordinator. About 44% of Vietnam War veterans included in the Vietnam Head Injury Study, most of whom had penetrating head injuries, developed epilepsy after their injuries, according to 2010 research funded by the U.S. Army and published in Neurology journal.
Vietnam vets’ seizures in some cases began a decade after their service, Husain said, and as late as 35 years after, according to the Neurology article.
Because of the Vietnam War veterans’ experience, in 2008, Congress mandated the creation of the VA’s Epilepsy Centers of Excellence, Husain said. And VA has tracked a two-year uptick averaging about 1,800 more unique patients a year with seizures, epilepsy, or “transient alteration of awareness,” according to the fiscal year 2019 annual report of the department’s Epilepsy Centers of Excellence.
IEDs have been the weapon of choice in Iraq and Afghanistan, which means blast injuries, rather than blunt-force injuries, have become common. Today’s veterans are also more likely to live through blasts because of improved equipment and faster battlefield medical response. But the wave from the blast can cause a TBI, even if no other injuries are apparent.
Husain senses that nonepileptic seizures are rising more steeply than epileptic seizures among Iraq and Afghanistan vets, he said. It’s difficult to tell exactly how many new veterans have epileptic seizures versus nonepileptic seizures because of how patient information is recorded in VA’s system, Husain said.
The nonepileptic seizures may be due to higher rates of mild TBIs, as well as to PTS.
Mild TBIs—which are common in veterans with blast injuries—have been associated with psychogenic nonepileptic seizures, or PNES, according to a 2015 study in the Journal of Head Trauma Rehabilitation. PNES are thought to have psychological roots.
Researchers still don’t know how much of a risk factor post-traumatic stress may be on its own for seizures—though a small 2017 study found that 13 of 16 veterans who received prolonged exposure therapy to treat their PTS stopped having seizures.
One study looking at medical records of active-duty troops from 2007 to 2016 found that troops with a traumatic brain injury or a PTS diagnosis were three to four times more likely to have a seizure. With both diagnoses together, the risk rose two to three times more, the December 2017 Medical Surveillance Monthly Report found.
It also makes it difficult to figure out whether the seizure has a physical or psychological cause.
And that complicates treatment. “It is often difficult to determine the causes of seizures and therefore to diagnose epilepsy, which is usually treated with antiepileptic medications,” the researchers wrote. “It is common for a PNES patient to receive years of inappropriate treatment prior to an accurate diagnosis.”
That same report showed the Marines’ seizures came just as the military saw a flood of cases across the board: After looking at military medical records of all active-duty service members from 2007 to 2016 who were not deployed at the time of their seizures (but may have deployed before their seizures), researchers found that the rate of all seizures hit 15.1 per 10,000 person years in 2011, before dropping back down to 9 per 10,000 in 2015. The rate of epilepsy alone—not including PNES—was more than 50% higher in 2010 than that of the U.S. population: 7.5 per 10,000 person years compared to the U.S. rate of 4.8 person years in 2007.
Researchers did not speculate about why the rate went up in 2011, before dropping back down, other than to say the change accompanied the drawdown of forces in Iraq and Afghanistan. During that time, the military also saw the rate of injuries and deaths from IEDs decrease substantially.
Husain usually can’t tell which kind of seizure a person had—epileptic or nonepileptic—based on the individual’s description of the seizure alone. PTS, depression, and anxiety may complicate or exacerbate both broad categories of seizures, while diagnoses of TBIs come with their own set of challenges: Doctors often can’t nail down the definitive cause or severity of the injury. The source of a brain injury was undetermined or unknown in 69% of patients seen at VA’s epilepsy centers in 2019, while the severity was unknown in 65%.
A conclusive seizure diagnosis can require days or weeks of tests, and diagnoses are at times wrong, especially for PNES, Husain said—and it matters because the treatment is different. Epileptic seizures may respond well to medication, while nonepileptic seizures may respond better to therapy. Because PNES are less well understood than epilepsy, Husain said, VA has focused more research there.
Husain said he’s waiting to see if more cases materialize along the same timeline as the Vietnam vets’ cases.
And while he hasn’t heard of any other groups of cases like the ones described in Somers’ unit, “That doesn’t mean it doesn’t exist,” he said. Without direct knowledge, he declined to comment on the specific cases.
‘This is Life’
Frequent medical appointments and tests.
Strict diets, plus eight hours of sleep every night.
And no drinking.
In California, seizures meant they lost their driver’s licenses.
“Try telling that to a 20-year-old kid that just got back from Afghanistan,” Bengtson said.
“It was like, ‘This isn’t the life a 28-year-old wants to live,’” Somers said. And it was all so abrupt: “This is what happened. This is life.”
Somers estimated he’s had a half-dozen grand mal seizures and about 15 absence seizures—the kind he had at the turkey trot where he didn’t recognize anyone, even though he was with people who should be familiar to him.
“It’s like you land on Mars,” he said.
While Somers and Bentson were in Sangin, Brandon Alt served with the Marjah group. By the time he had his first seizure in the summer of 2013, he’d been out of the Marine Corps for two years. Soon, he had grand mal seizures about every three months, as well as milder absence seizures about once a month.
John Hoban went to Marjah, too. His “episodes,” about five in total, started at about the same time as Alt’s. He calls them “episodes” because he did not get a definitive diagnosis.
Bengtson’s seizures continued until he received medication.
Alt, Bengtson, and Somers all say they try to avoid the emergency room when they have a seizure, but sometimes that’s not possible. Two of the four Marines interviewed have fallen and injured their faces. One clocked the back of his head twice. One got in a car accident.
For about the past year and a half, they haven’t had any grand mal seizures. Somers guessed that’s because their medications, diets, and sleep habits control the seizures.
Soon it will have been 10 years since they got back.
‘Can’t Tell Anything for Sure’
The four Marines’ treatments have differed significantly.
After the Marine Corps medically separated Bengtson and Somers because of their seizures, both went to VA.
Somers hopped among three VA hospitals in Southern California. A succession of doctors upped his meds after just about every seizure.
“And that sucked,” he said.
When he reached his limit of one anti-seizure medication, the doctors started “stacking” more, until about three years ago when he was taking three anti-seizure medications at once and felt “super lethargic” and “so tired all day long,” he said. He found it tough to focus, he said.
He eventually checked into the hospital for a five-day seizure study in which the doctors determined all those extra meds weren’t helping. Since he’s been on a normal medication dose for about a year and a half, he said he feels more in control. He’s had a few minor absence seizures. The last one was in February.
Throughout his early 20s, Bengtson refused to take anti-seizure medications because someone told him alcohol canceled out the meds.
“I thought, ‘I ain’t taking the medication if I’m still going to drink,’” he said.
After that, he thought he could link all his seizures to a night of drinking except one.
At VA, each time he reported a seizure, he felt like he had to start over from scratch, telling his whole history again, he said. He started to see a private neurologist, who finally drove home the point about drinking.
Bengtson limits his alcohol now, and he controls his seizures with medication so he can keep working as a small-town police officer.
Alt, meanwhile, has seen in the ballpark of a dozen private neurologists and neurosurgeons. They assume the three possible concussions in his military medical records could have something to do with the seizures.
“But it would all be speculation,” he said. “We can’t really tell anything for sure.”
Medical marijuana made the news in 2018 after much debate about its effectiveness treating epilepsy, gaining FDA approval for two epileptic conditions, according to the Epilepsy Foundation. In Colorado, Alt bought cannabidiol edibles, tinctures, or teas from a dispensary in his neighborhood and took a little at night.
“Zero negative side effects,” he said.
He hasn’t tried going to VA for treatment and instead decided to read up on his own. Realizing that swelling from a possible brain injury could worsen his seizures, he decided to go on an anti-inflammatory diet.
He’s trying growth-hormone replacement therapy, too, because it may reduce the symptoms associated with brain injuries.
He quit taking his anti-seizure medications after getting “crazy harsh migraines” and feeling weak. But he said he’s also lucky: He can sense a seizure coming on far enough in advance to take a one-time dose that wards it off. But he hasn’t used his medications or had a seizure in two years, he said.
Hoban didn’t see a neurologist until after at least three of his “episodes,” two at friends’ houses: His mouth watered; he became queasy; he felt like he’d blacked out but still could hear and see what was going on around him. He felt “huge energy waves, these reverberating pulses through my body”—exactly what he thought it would feel like to have a seizure.
As an emergency medical technician, he knew a little about seizures in general. He hesitates to use the word “seizure” for his own episodes because when he went to the VA hospital in Portland, Oregon, a whole slew of tests found “nothing conclusive.
“There was just nothing,” he said. “They’re always like, ‘Dude, you’re so freakin’ healthy.’”
He’s not getting treatment. He does, however, “smoke a lot of weed.”
Somers, the former captain, said if he ever has to get a 9-to-5 job, he’ll need a boss who’s cool with multiple long medical appointments every month and that he’s not supposed to drive or operate machinery. So he’s decided to be an entrepreneur instead, and he’s studying for a master’s degree.
He’s thankful that, after he appealed his disability rating, the VA increased it to 100%, meaning he has full medical and dental coverage, he said. In fact, VA will pay to replace three front teeth he fractured when he fell during a seizure.
Bengtson, the police officer, has partial disability benefits. He has to stay on top of his paperwork to make sure VA pays for his seizure-related expenses: A trip to the emergency room for a seizure can cost up to $10,000, he said.
Alt, who first brought this story to the attention of The War Horse, is moving from Colorado back to California where he’ll work as a sales manager for a solar company. As long as he feels like he has his seizures under control with the CBD products and anti-inflammatory regimen, he doesn’t plan to go to VA.
Hoban quit the fire department where he worked as an emergency medical technician because, “What if it happens when I’m driving?” Without a formal diagnosis beyond a slight magnesium deficiency, which can cause tremors, he’s not being treated for seizures. Now he runs a cannabis farm in Oregon.
While Somers waited for his medical separation back at Camp Pendleton in 2012, he tried to find some answers, but to no avail.
He hoped to prove what caused the seizures and figure out how they can be prevented.
“It interested people—people knew something was up, something was wrong—but it never really seemed to go past that,” he said. “Maybe it wasn’t in their mission. They had other stuff going on.”
Finding an answer shouldn’t be outside the realm of possibility, said Gaillard, the neurologist and society president.
“The people I know who serve as military physicians are open-minded people, and if there is a cluster that is unusual, then they will try and organize their resources to try and address that problem,” he said. He added that a military or VA neurologist should “determine cause, then get these men who served our country the appropriate treatment.”
“I’ve been asking the same question for the last eight years,” Somers said. “Why is this happening?”