Hello I Want to Die Please Fix Me

by Anna Mehler Paperny

  “That same magnetic field you could use to evaluate the brain could be harnessed to treat it,” says Jeff Daskalakis, a director at Toronto’s Temerty Centre for Therapeutic Brain Intervention at CAMH. He tells me as we walk through the Temerty Centre’s beige-ish halls that buzzing your brain with magnetic waves every five or ten seconds will depolarize neurons—make brain cells pop on, then off. Keep doing it, and you might change something.1

  The idea behind repetitive transcranial magnetic stimulation (rTMS—repeated zapping) is to do the same thing electroconvulsive therapy (ECT) does but in a lower-maintenance, less resource-intensive, less freaky way. ECT uses jolts of electricity to give your brain a hard reboot through a general seizure. The rTMS technique uses a magnetic field to give more specific parts of your brain a hard reboot and avoids the seizure altogether.

  He explains that “to the brain, magnetic fields and electrical fields are indistinguishable. They both cause depolarization of neurons. But they do it in different ways.” Electrical fields hit the cerebrospinal fluid like a stone in a pond—ripples everywhere, sending those electrical signals all over the brain. Magnetic fields, on the other hand, hit a targeted area and stop. “So when you stimulate an area that big”—he makes a circle with his thumb and forefinger—“it stays that big.”

  The plus for rTMS is that it’s easier to perform and implement, and easier for people to access, accept and attempt. But studies so far indicate it isn’t nearly as effective as ECT.2 And the psychiatrist and ECT evangelist Charles Kellner, of New York’s Mount Sinai, is dismissive of the suggestion that zapping someone with magnetic energy is a viable alternative for people who’d otherwise be candidates for electrically induced seizures.

  “Patients can do whatever they want, but my opinion is that ECT is a serious treatment for a serious illness—rTMS is much more a faddish treatment for very mild depression. They are not comparable. They’re not for the same population and they shouldn’t be confused.”3

  Back in Toronto, Jeff Daskalakis is more diplomatic. He thinks the issue with ECT is twofold: first is stigma, the deep-seated fear that people hold toward it and that often is perpetuated by psychiatrists themselves; the second is ECT’s limited availability—he figures the province of Ontario has the capacity to administer ECT to maybe 1 percent of the people with treatment-resistant depression who could benefit from it. “So rTMS is designed to bridge some of that gap to get people better….[It] is potentially…a lot easier to tolerate. There’s virtually no stigma behind it. And so the idea of having rTMS deployed widely across the province is very appealing.”

  (It didn’t work for me, and my psychiatrist thinks it may have had some unpleasant cognitive side effects: I found myself unable to make the most basic decisions, the struggle to synthesize bits of information sending me into a panicky tailspin. But I tried it during an especially awful fall during which I could barely make it out of bed to go to my rTMS sessions, so perhaps that’s why.)

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  A KINDER VERSION of the shock treatment that sidelined Jack Nicholson in One Flew Over the Cuckoo’s Nest and elicited such horror in Janet Frame’s mid-twentieth-century New Zealand madhouse prose remains, according to the data we have, one of the most effective treatments for cases of depression that defy treatment. Positive response rates immediately following a course of acute ECT, usually several sessions over a week or two, can top 75 percent.4

  Whether you can maintain that remission or degree of improvement is another story altogether. “For people who have very severe depression, it’s a very important option. And it’s used far too little,” Thomas Insel, the former National Institute of Mental Health director, tells me. When I first spoke with him by phone he was helming the country’s public mental health epicentre but would shortly after leave for the world of mental health tech startups.

  How does it work?

  Science is still trying to figure that out. Some theories postulate that the seizures ECT induces somehow spark the creation of new, stronger, more active neurons. Thomas Insel compares it to manually rebooting your computer—“just hitting the reset button.” 5 The single most effective treatment-resistant-depression treatment available is the neurological equivalent of a hard reboot—an IT specialist asking, “Well, have you tried switching it off and then on again?”

  ECT has changed in the past half-century: pulses instead of a stream of electricity; general anaesthetic for the pain; muscle relaxant to keep you still; a styrofoam-like bite block so you don’t chomp your tongue; a whole team to do the procedure, including an anaesthesiologist monitoring your heart rate, breathing and blood pressure. You get electrodes on your scalp to measure your brain activity and bespoke voltage titrated to your brain’s needs.6 You turn on the electricity with a button and not, to my chagrin, the kind of fun-size switch I’d envision Dr. Frankenstein using to animate his creation.

  The electrical stimulus is measured in millicoulombs, set at several times the minimum amount of energy it will take to induce a full seizure in a person. At the right dose, four to eight seconds of stimulus makes for twenty to sixty seconds of generalized seizure. The whole thing, start to finish, takes about eight minutes. Then you head to the recovery area and have some breakfast, because you haven’t had anything to eat or drink in the eight or so hours prior to the procedure. Coffee can be good, apparently, especially if you have a post-seizure headache. The fine print is that you need these shocks to your brain repeatedly in order for them to work in the long term—the first round is maybe two or three a week, but “continuation” ECT in the months following the first round make you much more likely to stay well. And even then, your odds aren’t amazing: 37 percent of the people in a 2016 study who got ten extra ECT treatments following their first acute round had relapsed within six months.7 Just as worrying, for many, this treatment can mess with memory and cognition, although studies dispute how long the cognitive impairment lasts and how much of it is due to the depression itself. You’ll probably be groggy for about twenty minutes after the procedure. You shouldn’t drive a car for the next day or so. General haziness may stick around for a couple of weeks. Most people lose some memories—the most vulnerable ones seem to be discrete recollections formed in the weeks or months before treatment; a trip, perhaps, or a new acquaintance. Most people get most memories back within six months of their last round of ECT. But some are gone for good.

  “It’s not as big a concern as most people think,” Charles Kellner assures me over the phone from New York. “There’s no medical procedure without side effects, and some temporary recent memory loss is a side effect of ECT for many patients.” He, for one, is tired of people’s electroconvulsive (do not call it electroshock) therapy freak-outs. “The problem is that most people get their information from the internet….Even Wikipedia, which many people consider reliable, the ECT page has been infiltrated by the Scientologists.”

  He also tells me that ECT is being refined all the time, its negative side effects whittled away. Ultra-brief pulses, for example, seem to minimize cognitive damage; ditto electrical pulses that target only one side of the head instead of both. But these somewhat gentler methods can also be less effective than the blunter versions.

  Charles Kellner refused to talk about what percentage of people who get ECT lose memories they never get back, because “it will be misunderstood.” He says, reasonably enough, that people forget things all the time and it’s tough to separate what the ECT made you forget from what depression messed up in your memory from things you would have forgotten anyway. He thinks we should stop worrying about that, period.

  “What you have to understand is you would never do ECT for a trivial reason….If I were an oncologist instead of a psychiatrist and you came to me with a life-threatening cancer and I said to you, ‘You need chemotherapy to save your life and the chemotherapy is going to cause you to lose your hair for six months’ and you said to me, ‘I’m not going to have my lifesaving treatment becau
se I don’t want to lose my hair,’ it would be the same thing as a seriously depressed patient saying, ‘I don’t want to have ECT because I’m going to have a temporary, small amount of memory loss.’ It’s equally ludicrous.”

  Maybe this argument convinces some patients. Maybe being told you’re being ridiculous and your concerns are silly and memories are no more valuable than hair, silly patient, can actually make you trust a treatment you were leery of before. Call me crazy, but memory loss worries me way more than hair loss. In my early forays into the mood disorder universe, the very prospect of ECT petrified me.

  But it’s easy to foreswear icky interventions a week into beginning treatment for this illness you just realized you had; much more difficult after a decade of debilitation. My ECT antipathy weakened with every new drug regime. Truly, I have enormous respect for the difficult decisions people make about their treatment.

  My psychiatrist and I discussed it in passing but we shared the same concern: even if a workplace disability plan allowed me to take weeks or months off work, even if I were confident of a return to the office at some point in the future, how could I live in the interim, and how could I work with compromised cognitive capacity that could last months or years? I rely too much on work for my life’s purpose and I have no brainpower to spare. It’s not something I’ve ruled out. But it’s something I’d think hard about beforehand.

  I’m not the only one imbued with a deep-seated fear of medically administered brain electrocution. Rebranding electric cerebral jolts as less painful, more humane, less likely to cause grand mal seizures and proven to do wonders for people in the most catatonic states of depression has been only partially successful so far. Psychiatrists are fighting an uphill battle against decades of culturally ingrained, once-well-founded public horror of the procedure—so much that few public hospitals offer ECT.

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  WHAT ELSE IS out there? A hole in your head.

  Your brain has no pain sensors, so you only need a local anaesthetic on your scalp before a surgeon makes a crescent-moon incision across the top, pulls back the tissue, drills a hole through either side of your skull and uses an insulated stylus, metal tip the size of the ball of a ballpoint pen, to burn two mirror-imaged spheres the size of sugar cubes in your brain tissue.

  If you try everything and nothing works—not neurotransmitter reuptake inhibitors, monoamine oxidase inhibitors, mood stabilizers, anticonvulsants, antipsychotics, psychotherapy, repetitive transcranial magnetic stimulation or electroconvulsive therapy—you may qualify for what is called an anterior cingulotomy. The surgery, pioneered in the 1950s and ’60s in the shadow of the lobotomy—the Nobel-winning procedure involving an ice pick through your eye socket to scramble your frontal lobe, frequently performed on men and women (mostly women) without anything resembling consent and with often devastating results—involves toasting two spheres of brain tissue about a centimetre in diameter.

  I contacted Darin Dougherty—a psychiatrist at Massachusetts General, still the only hospital in the U.S. that performs these surgeries for mental illness—to find out more about the procedure. He was friendly and encouraging of my desire to learn more than the nothing I knew about brain surgery.

  In the wake of what he calls “the frontal lobotomy debacle,” the neurosurgery community was seeking a more precise way to slice into the brains of people with mental illness. Neurosurgeons didn’t know where to start so they picked a spot at random. “The idea was to move from these big, indiscriminate lesions…to small, targeted, discriminate lesions,” Darin Dougherty explains to me.8 Apparently we still don’t know how it works, though, or why we target the forward-facing inner fold of brain called the dorsal anterior cingulate cortex, or what that cortex does. But we do know it’s part of the network that’s involved in depression. “Remember this procedure was started in the ’60s…and it just happened to be effective.”

  Similar surgeries were being pioneered at a few sites worldwide around the same time. But some guesses were less lucky. “In Germany they did things like excise part of your grey cortical matter on the brain surface. Yeah, they would just take cortex away, and that wasn’t effective,” he says. You had dozens of people in the mid-twentieth century who volunteered for an experimental craniotomy to treat their intractable depression only to be left with two holes in their heads, still mired in despondency. “Can you imagine?”

  The trouble with these invasive procedures: you can’t do a randomized control trial on a brain surgery procedure. The control would require a fake skull-drilling, brain-tissue-burning operation. All you can do is track what happens to the patients who get it. And the evidence so far shows that the cingulotomy that surgeons stuck with, that toasts two little spheres of your brain, still works better than almost anything for people for whom nothing else works.9

  What’s involved in an anterior cingulotomy? You come in to hospital. You get an MRI “so we know exactly where we’re going.” You get local anaesthetic lidocaine in your scalp, then a frame—the kind that looks like metal scaffolding and is used for people with vertebral fractures—screwed through the skin till it touches bone so as to keep your skull stable. Maybe also a benzo like midazolam for anxiety.

  Then you get a high-res CAT scan and technicians overlay it on the MRI to give themselves a visual of where they want to go. “It’s basically three-dimensional space geometry stuff.” They bring you into the operating room and screw your metal-scaffolding frame to the bed so you can’t move your head at all. The surgeon slices through your scalp, one incision spanning the desired locations of both holes, which will straddle either side of the front-ish part of your head. “If you drew horns on somebody, that’s where they’d be coming out,” is how Dougherty describes it to me. A precision drill bores a hole into your skull, through the protective swim-cap-like dura, until it just reaches (but doesn’t pierce) your brain. “The drill is foolproof: it’s designed to do this,” he reassures me. “You don’t want a ‘oops, I pushed too hard.’”

  And then?

  “Well, then you’ve got a hole.”

  The surgeon takes the metal probe programmed with the exact coordinates of the spherical hole they want to burn in your brain. Based on the imaging, they push the probe down as far as indicated and lock it in place. Then, they turn the probe on. The probe itself is insulated except for the tip, which heats up to about 85, 90 degrees Celsius. The surgeon leaves it in place for about sixty seconds, and voila. Your lesion. Then you can take it out and do the other side. “And then you just sew them up and that’s it.”

  See? Easy. It’s about an hour, start to finish. You’re home within forty-eight. You end up with mirrored balls burned into your brain. I ask if they’ve ever tried just doing one side. “It’d be interesting to study,” he muses. “The problem is, if you picked the wrong side and you need both, you’d have to do two brain surgeries instead of one. So we’ve never really explored it.”

  He doesn’t do the surgery himself: he’s a psychiatrist, not a surgeon. After the hole’s bored in your skull but before your tissue’s burned, he and his team are doing research with your informed consent to see what’s going on neurocircuitry-wise when you perform different tasks.

  While they’re in there, they can measure single neurons firing during specific tasks. They take electrodes the size of a human hair and insert them in the same place they’re going to burn later.

  If you really want to zero in on a neuron, you’ve got to listen for it.

  “You can hear the crackle of a neuron—we always have the volume up. That’s the best way to identify it.” (Yes, that crackle’s basically the same sound as Rice Krispies cereal.) “That’s when you know you’ve found a neuron—the noise the electron firing makes; that crackle that you hear is an action potential or a firing.” That crackle means the neuron is sending a message—making a connection, issuing instructions. He and his colleagues are listening for changes in the crackling pattern and how your brain is re
sponding, then they chart those noises. “The sound is converted to a curve that we can draw and then we do quantitative evaluation of that curve, measurements and math and that kind of stuff.”

  You go through computerized tasks, keyboard placed for ease of use while you lie on the operating table. They measure your attention, and what happens when they try to distract you; they’ll get you to do gambling tasks and see how your brain responds when you make decisions, when you win or lose. Dougherty and his team are less interested in how you actually do at those tasks than what your brain is doing while you do them—how you make the decision. “Because some people are presented with a high risk and they’re like, ‘I’m going to bet low so I don’t lose as much.’ And some people are like, ‘I’m betting high all the time.’…And then when you hear whether you’ve won or lost, people respond differently, and their brain responds differently. And so we’re interested in what happens at different points all the way along.”

  You can’t compare brain activity before and after the procedure, because the bits you’ve toasted are no longer doing anything.

  About three-quarters of patients who undergo anterior cingulotomy improve within about six to twelve months. This is a good response rate, as far as depression treatments go. Dougherty says there’s no evidence it impairs your cognitive functioning.

  But you’ve still gotta keep taking your meds.

  “The worst thing that can happen is a patient thinking, ‘Oh, I’ve had the procedure; I don’t need to take the medication anymore.”

  The relapse rate is “low, but not zero.” About 10 to 20 percent of people who got better following treatment will lose either some or all of the improvement. (Going all the way back to square one is pretty rare, though.) If you relapse or don’t respond in the first place, if you’re in that unlucky 25 percent that doesn’t get better after having bits of brain burned away, you can come back for a subcaudate tractotomy—that’s basically the same procedure in a different location, toward the lower portion of the brain.