A week before his 23rd birthday, Max Meehan and his boyfriend went to a party at one of their favorite gay dive bars in the Back Bay of Boston. Max had a lot to drink. They danced until they were sweaty and smoked too many cigarettes. At some point, Max left the bar, met his dealer around the corner, and bought some heroin.
Hours later, after getting home, Max went to the bathroom to shoot up, as he had done countless times before. Drunk and high, he passed out on the couch.
The next morning, when he tried to get up, he collapsed onto the floor. His leg wasn’t working, somehow. I must have slept weirdly on my leg, he thought. Scared and in pain, he started to cry.
His boyfriend ran in, helped him back to the couch, and asked him what was wrong. Max stood up, only to sink to the floor again. His leg felt paralyzed. Again the thought struck him, as if brand new: I must have slept weirdly on my leg. He started crying.
Some minutes later, the seemingly new thought flew into his mind. I must have slept weirdly on my leg. He started sobbing frantically.
Many hours and two hospitals later, a slew of tests had failed to find a cause of Max’s leg pain and extreme confusion. His family was terrified.
“He was just kind of laying in bed, wondering what was going on,” said Max’s mom, Laura Frongillo, who was at his side at Lahey Hospital and Medical Center, not far from her home. “It was 21 hours really of not getting any information. It was just really shocking and scary.”
She and Max’s sister would try to cheer him up by showing him one of his favorite YouTube memes, “Sweet Brown.” Even though he had no idea of his surroundings, he was still his goofy self. “We just kept playing the video for Max, and he kept thinking it was the funniest video ever,” his mom recalled. “He would laugh again and again like it was brand new.”
The next day, Max saw Yuval Zabar, one of the hospital’s neurologists. Zabar gave Max a few standard memory tests, like asking him to draw three words and three shapes on a piece of paper. Minutes later, Max could only remember one of the words and one of the shapes. In another test, Zabar hid objects in various parts of the exam room and then asked Max to point where they were. “Sometimes he couldn’t really even tell what I was talking about,” Zabar recalled.
“It was clear to me that he was not just confused,” Zabar said. “This was a more specific problem — the kid was amnestic.”
Zabar ordered an MRI scan, which highlights brain areas that have been damaged by a lack of oxygen, or “ischemia.” Inside Max’s skull, he could make out the gray, jello-like silhouettes of various brain regions. But clustered near the center were two glowing orbs of white.
Zabar was shocked. The spots were perfectly localized, on each side of the brain, to the hippocampus, the seahorse-shaped region that encodes new memories. In his 20 years of treating patients with neurological problems, Zabar said, he had never seen anything like it.
That was 2012. Since then, Max’s case has turned out to be the first of an alarming cluster. In Massachusetts alone, doctors have identified 14 people with damaged hippocampi who suddenly lost the ability to form new memories — and 12 of them had a history of using heroin or other opioids.
Next week, Massachusetts public health officials will officially recognize this as a “reportable disease.” That means that for the next year, doctors will alert the state of any new cases, just as they do for infectious diseases like Ebola or Zika, in the hopes of collecting enough data to figure out how many addicts are suddenly losing their memories, and why.
Is it tainted drugs? Or an unknown side effect of the cheap and powerful heroin alternative, fentanyl? A piece of Max’s genetic makeup that made him susceptible to brain damage? Or perhaps something much simpler: a tragic, if unmysterious consequence of exposing the brain to opioids, again and again.
Max grew up in the Boston suburb of Winchester, middle class but feeling “poor” compared to his millionaire neighbors.
His dad was an arborist and aging punk rocker who long struggled with alcoholism. Max’s mom, a copywriter, left him when their son was 12. Although they were open-minded and unconventional, Winchester was conservative, and Max didn’t feel comfortable coming out. When he got to the idyllic and isolated Green Mountain College in Vermont, it felt like a ticket to freedom.
Percocets were everywhere on campus, as common as weed or booze. He started with pills, then switched to needles because that’s what his boyfriend did. Coming from “snobby” Winchester, Max never thought he’d be an intravenous drug user. “I thought it was disgusting,” he said, waving his hand in mock distaste and laughing. After that, he said, “it became a normal thing.”
His boyfriend broke up with him and Max fell into a depression, and moved from injecting Percocet to heroin. His drug use soon consumed him. He moved back to Massachusetts, transferred to UMass Boston, and got a job waiting tables.
After two years of almost daily drug use, Max had the amnesia spell, and his life began to spiral out of control. Unable to remember what year it was or how to get around Boston, he dropped out of school. He had to quit the restaurant job after two dizzying shifts losing people’s orders and forgetting where his tables were.
“I remember feeling, just like, intense dread, because I didn’t know what was happening,” he said. “Because I thought I was going to be like that for the rest of my life. It made me act like a crazy person.”
He felt trapped in a thick fog. Some days, he remembers, he would try to drink a handle of vodka to escape, but his brain refused to get drunk the way it used to. Some days he found himself home alone in his apartment, screaming.
His roommate eventually asked him to move out, saying she couldn’t take care of him any longer. His boyfriend, who hadn’t known about Max’s heroin habit before the amnesia hit, broke up with him. He moved back in with his mom.
But Max kept showing up to his doctor’s appointments. About a month after he was first hospitalized, the doctors at Lahey gave him more cognitive tests to see if anything aside from his memory — like his motor skills, attention span, or vocabulary — had been affected. The tests showed that Max’s memory was still shot, but everything else seemed to be intact.
“I was terrified to think of going to work and having him being home alone,” Frongillo said. She worried he would forget to turn off the oven, or overdose.
A couple weeks later, after getting heartfelt letters from his mom, sister, grandmother, and two friends, Max agreed to go to rehab for the first time. The amnesia “was absolutely a wake-up call,” his mom said. A rehab in Connecticut turned him away because it didn’t have the staff to deal with his memory problem, but his mom eventually found a facility in Florida that would take him.
Max hated rehab. The staff treated him like a child, he recalled, and without the drugs to self-medicate his depression, he felt “empty.” Some days, he’d sneak into offices to call his friend, Ace.
They had met at a bar. Ace, a construction worker 10 years his senior, bought Max a drink, and soon they were in the bathroom doing lines of cocaine. “I fell in love with him, like, immediately,” Max said. The next weekend, they took a trip to Cape Cod. From then on, “we never left each other’s sides.”
When Max got out of rehab, he still struggled to remember things, and dove back into heroin. Ace was undeterred. “So many people had just given up on me at this point, because they were sick of me not taking care of myself,” Max recalled. “He could handle me.”
A year later, Max’s cousin and one of his closest friends, Louie, a 25-year-old star athlete from Cape Cod, died of a heroin overdose. Max had “Louie” tattooed in typewriter font on his wrist, with a red heart in place of the “o,” so that he would have to look at his name every time he shot up. He hoped it would help him stop. Instead, he sank into a deeper depression and began using more often. Ace saved Max’s life several times by giving him naloxone, an opioid overdose antidote. Sometimes, they got high together.
Gradually over the next two years, Max’s memory improved. He got a job at a bakery. Ace bought him a truck, made sure he got his scruffy blonde hair cut, and kept his doctor’s appointments.
At a visit 22 months after that one scary night, Max did much better on his memory tests, and his brain scan no longer showed any sign of the glowing white orbs. His doctors thought about publishing Max’s case, but never got around to it.
“I thought it was a one-off thing,” said Jed Barash, another neurologist at Lahey who consulted with Zabar about the case. (Barash has since left Lahey and is now the medical director of a nearby hospital, Soldiers’ Home.) “In medicine, there’s a lot of things that you come across that you see once — it can be a fluky thing, and you don’t see it again.”
But they did see it again. In early 2015, a 41-year-old man and his wife came to Barash’s office. The man, who had a history of heroin use but claimed to have been clean for years, was having trouble remembering. His problems had started one weekend when his wife and kids were out of town. When they called him to check in, he seemed confused, repeatedly asking why the kids weren’t in school.
He went to the ER, getting basic memory tests, an EEG, and an MRI, but the doctors found no explanation. They sent him home. Eight weeks later, the family came to Lahey for a second opinion, saying he was still struggling even to remember the rules of board games.
When Barash looked at the man’s brain scans, he was shocked: The hippocampi were two brightly lit orbs in a sea of gray — just like Max’s.
“I was like whoa, this is like, really weird,” Barash said. “At that point, I suspected something unusual was going on. You can see one thing. Once you see two you start getting suspicious.”
Barash, whose laid-back demeanor underplays his desire to be taken seriously in the world of research, ran the images by a neuroradiologist at Lahey, Juan Small, to “make sure I wasn’t seeing things.”
Then Barash, Zabar, and Small started asking their colleagues at the hospital to flag potential cases, and found two more. One was a 33-year old woman who had come to the hospital the year before with severe memory deficits after being revived from a heroin overdose. The other was a 52-year-old woman who had been found unconscious and had lingering breathing problems. Both women tested positive for opioids and other drugs. Both had the same glowing orbs in the center of their brain scans.
When chatting among themselves, the three doctors dubbed the new syndrome “CHIAS,” for complete hippocampal ischemic amnestic syndrome.
“It was kind of a joke,” Barash said, describing how silly it felt to name a syndrome that they still weren’t completely sure was real. He was worried the name sounded too much like “Chia pet.” Zabar said it sounded too much like “cheese.”
In November 2015, Barash notified the Massachusetts Department of Public Health about Lahey’s four amnesia patients. The state, concerned with its booming opioid epidemic, quickly took action.
“West Nile virus may not have been recognized for another year if a doctor in Queens hadn’t called a health department,” said Alfred DeMaria, medical director of the Massachusetts Department of Public Health’s infectious disease division. “We’ve had essentially a doubling of opioid overdoses in the past several years — fatalities. That was on our mind.”
Three months later, DeMaria sent out a letter to the state’s board of registration of medicine, blasting the inboxes of neurologists, radiologists, and emergency room physicians in Massachusetts to ask if anyone had seen more of these bizarre cases. Barash and his colleagues started getting responses within hours.
“It was people who had seen one or two of these cases and didn’t know what to make of them,” DeMaria said. “It wasn’t until they got the note that a light bulb went off that maybe there was something more.”
When Mara Kunst, a radiologist from Holy Family Hospital, saw the alert, “I breathed a sigh of relief,” she said. She had seen two cases in the fall of 2015.
Neurologist Chun Lim was doing his weekly shift at a Boston-based rehab facility when he came across a middle-aged man who tested positive for opioids and didn’t have any idea why he was in the hospital. “He could not retain any new information,” Lim said. Other doctors had assumed his memory loss was caused by the shallow breathing that comes with overdoses, but Lim was highly doubtful. Although studies had found that respiratory arrest is more harmful to the hippocampus than other brain areas, Lim’s own research had shown that the damage would very rarely occur on both sides, and would most often affect other areas of the brain as well.
“When they came out with this call, my patient fit it completely,” Lim said. He later realized that another patient he’d seen who’d overdosed on opioids and anti-seizure medications also fit the pattern. “Never before had I seen the patients that were described here.”
As news of this mysterious new syndrome spread in the scientific community, Max hit a new low, reeling from the deaths of two family members in as many years.
First there was his cousin Louie. Next was his father, who died of his alcoholism at the age of 54.
By October of 2016, Max was falling apart. “I just lost any motivation to change and better myself,” he said. “I really allowed it to have its grip on me.”
One night, while his mom was away on a business trip, Max’s stepdad and stepsister found him unconscious in his room on the third floor of their Winchester home. An ambulance took him to the ER, but Max insisted on going home. At 6:30 the next morning, he got up and went to work. He called his mom and apologized, telling her not to fly home early from her trip. “He talked me into believing he was okay,” his mom said.
That night, his grandmother, who had come stay with them to keep an eye on Max, heard a bang from upstairs. It was Max’s head slamming against his headboard — he had overdosed again.
Max’s family staged an intervention, begging him to get help. When he refused, his grandmother and his aunt, Louie’s mom, went to the courthouse to get him forcibly committed to a hospital. The police arrested him at the flower shop where he worked.
“I was so sad, but I was also so relieved about it at the same time,” his mom said. “Obviously if he was overdosing two nights in a row, he was a danger to himself. It was awful.”
Max was placed in involuntary custody at Bridgewater State Hospital, which the Boston Globe has dubbed “a medium-security prison masquerading as a mental health hospital.” He was there for just under a month, including for his 27th birthday.
While there, Max got so bored that he finished his first book since the amnesia event: The World According to Garp, which follows a man struggling to become a writer. He stole it from the library, and read its 600-odd pages cover to cover.
In January of this year, Barash and DeMaria published a paper for a CDC report, assembling 14 cases that clearly fit the mold first set by Max. They had all showed up in emergency rooms in eastern Massachusetts between 2012 and 2016, and 12 had a history of opioid use.
Whenever Barash talks about what could be going on here, he invariably mentions the “frozen addicts” of 1982. That’s when California doctors reported a cluster of seven heroin addicts who suddenly developed symptoms eerily similar to Parkinson’s disease. Their bodies were stiff and rigid, their movements spastic and uncontrolled. After some detective work, doctors discovered that the addicts had all been using a synthetic opioid that had been contaminated with a toxin that mimicked Parkinson’s.
When Barash and Zabar had first searched the literature for any examples of hippocampal damage similar to Max’s, they found only a handful of scattered case reports: a couple of cases involving cocaine use, one case from Korea involving carbon monoxide poisoning, and one person who had brain damage brought on by the flu.
The cluster of new cases in eastern Massachusetts, which began with Max's case in 2012, appears to be growing in step with the nationwide opioid epidemic. Opioid overdoses have quadrupled in the last 15 years, driven largely by a rise in heroin use and, more recently, by fentanyl, an opioid 50 times more powerful than heroin. In Massachusetts, where overdose rates have doubled since 2012, 75% of people who died of an unintentional overdose last year had fentanyl in their system.
Some doctors, including Lim, believe that fentanyl could be driving the rise in amnesia cases. “The only thing that seems to parallel this is fentanyl use,” Lim said.
Others aren’t so sure. “There’s a lot of people using fentanyl and there’s only 14 of these cases,” Barash said. It’s more likely, he said, that the drugs these patients took were contaminated with some sort of toxin that specifically targets the hippocampus.
There are lots of other theories. Perhaps some people have a genetic predisposition that makes them sensitive to something in the drugs. Maybe repeatedly using fentanyl, which causes severe respiratory depression, could weaken the sensitive hippocampal neurons over time, making them especially vulnerable to an overdose. Someone even sent Barash a paper about a cluster of people in Canada who developed amnesia after shellfish poisoning, suggesting maybe there was a common thread in the structure of the toxin involved.
Or perhaps there is no mystery. An opioid overdose causes severely slowed breathing. With thousands of people in Massachusetts now using opioids, perhaps these unlucky few lost oxygen for just enough time to damage the sensitive hippocampal cells, leaving the rest of the brain unscathed.
“I would fully expect this to happen with respiratory depression or respiratory arrest from opioids,” said Gary Franklin, a research professor in neurology at the University of Washington. In 2005, Franklin was the first to report that people could die from overdoses due to prescribed opioids. “If they think that something extremely special is going on here, like one of these drugs did something very targeted, I don’t think so.”
Lim, Barash, and DeMaria all dismiss this idea, arguing that if it were true, far more of these cases would have been reported before. “From a purely statistical standpoint,” Lim said, “having a whole series of these cases makes me think there is something else going on.”
One thing they all agree on: Addicts with mental confusion show up to ERs all the time, and some unknown number of them likely have damaged hippocampi. Next week’s announcement from the state health department should help researchers get a more precise count. Officials will now be systematically monitoring all reported cases and looking for common links, such as what drugs they’re using, whether naloxone was used, or how long they were unconscious.
With so few cases, it’s not at all certain that they’ll find clear answers. “The reality is that science and medicine, they’re messy. You see a lot of things that don’t necessarily get answered. You have to live with that,” Barash said. “But would I be satisfied if we don’t find the answer? No, I wouldn’t be satisfied.”
To Franklin, however, all this attention on the mysterious cluster misses the far more important public health issue.
“The bigger point is that people overdose and then they go back into the community and keep doing it, because they’re not reporting it and nobody’s paying attention to these people. And then they overdose again and they die,” he said. “Don’t you think that’s a bigger picture than these sort of rarified findings?”
The four original amnesia patients who went into Lahey reflect this sad reality. The 41-year-old dad died less than a year later. The two women eventually lost contact with the doctors. Only Max is still around.
When Max got out of Bridgewater, at the end of last year, he and Ace tried to cut down on their drug use. Especially Ace. “He wanted so badly for this to not be in our lives anymore,” Max said.
This January, Ace went to Florida to do asphalt construction projects, like he had many times before. But unlike years past, he went with an older crew who didn’t use drugs. The plan was that when he returned, he and Max would get an apartment, get a dog, get married, and get sober.
But two days before Valentine’s Day, Max got a phone call saying that Ace had died in his sleep. He’d been found in his bed with empty baggies in his pockets.
“He was the best friend I’ve ever had,” Max said, crying. “I don’t even know what to do now that he’s gone. It’s so fucked up. I just got so used to him being there for me. There was nothing I could do that would make him leave me. He was so gonna be there for the rest of my life.”
One day in early March, Max’s mom came home from work and went upstairs. She pushed open the door to Max’s room and saw him lying on the floor, face gray. It was the first time she had seen him after an overdose.
His mom immediately told her husband to call 911. She grabbed the naloxone, which she kept on a bookshelf outside of Max’s room, fumbled with the first one, and eventually stuck the second one up his nose. The ambulance got there while she was still on the floor, holding Max.
“It was the scariest thing I’ve ever seen in my life,” she said. “That feeling, I carry it with me, all the time.”
On March 23, Max went to his first appointment at Lahey in three years. He sat slumped in a chair in the exam room, wearing a tiny ace of hearts charm around his neck for Ace, and a small silver fishing hook for his dad.
He coasted through his cognitive tests, reciting words back in order, drawing shapes, and rattling off dozens of words that began with the letter “F.” But he told Zabar he still struggled to focus on bigger tasks, like reading books or writing. He had managed to finish a book. He wanted to go back to school.
He told him about Ace, his crushing depression, and his new therapist. He told him he was still using, but buying his drugs from a different dealer since the amnesia episode. He didn’t want to go back to rehab. Instead he was trying to get clean with ayahuasca, a powerful psychedelic drug that's being studied for treating people with PTSD or addiction.
The next day, we talked about his habit. Since Ace died in February, he said he’s done heroin maybe three times, instead of daily; the stakes are much higher now, without Ace around to revive him from an overdose. He couldn’t quite say that he’s ready to quit, but kept repeating, "I want to want to stop.”
If his mind fog ever clears, he’d like to write a book about everything that he’s been through. “I want to show that it happens to normal people,” he said. “But I can’t write a book yet because I don’t have the resolution or whatever. I want to be able to tell people, ‘I made it out alive.’” ●
Azeen Ghorayshi is a science reporter for BuzzFeed News and is based in New York. Her PGP Fingerprint is 672A 7C08 9443 A95F 9D85 78FB 91EB 9C30 B197 5963.
Contact Azeen Ghorayshi at firstname.lastname@example.org.
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