As you might imagine, I did a lot of thinking about the powerful experiences of that night and day. That afternoon I had received TMS, and for the next little while, nothing obvious had happened. Four hours later I began thinking of—but not experiencing—hallucinations, and talked about them all through dinner. Then I went home, and starting just after midnight, I had visions almost until dawn. Michael had gone home right after his session, and I wondered what had happened to him, but we had agreed not to discuss it till the study ended. When we did talk, a few months later, I was disappointed to hear that he’d felt a sharpening of his senses, but the hallucinations that hit me so forcefully didn’t come to him at all. Was that because it took more to change him? I asked Alvaro, but he didn’t know. Also, Alvaro reminded me that they didn’t stimulate the same areas in each of us that day because the order of the target areas was randomized.
It was as if the TMS had spoken to me by putting my mind on the track of hallucinating and then making it happen. That was very strange. The events of that night had hit me with enough force that before dawn I had written and sent a thousand-word missive to Alvaro as I’d sat upstairs in the dark in my study. He was startled to find it in his inbox when he woke up the next morning.
In my email and afterward, I tried to make sense of it all. Had the scientists just happened to hit a “right spot” in my brain, releasing a flood of imagination and memory? Was there a “secret switch” for that behind my right temple? Or were the hallucinations the cumulative result of energy and changes over the entire series of TMS sessions? Whatever the trigger, the aftermath of the experience was shaping up to be more noticeable with every passing day.
The results of every TMS session seemed to follow a similar pattern. There was an immediate effect, which the scientists tried to capture with their testing. Then there was a short-term effect that I felt in the hours after. Finally, the longer-term effects arrived, and some remain with me now as I write this story, years later. Will they last forever? Only time will tell.
In my five A.M. email to Alvaro, I’d described my vision of the mass of spaghetti in my brain that was sprouting tendrils and weaving itself together. As odd and science-fiction-like as that image was, it may be the best way of articulating exactly what was going on in my head all through that night. Alvaro told me that our brains are making new connections all the time, but that the rewiring is subtle. However, the changes that I’d experienced from TMS and its after-effects were much more profound and far-reaching than the minor rewiring the scientists believed the brain could do overnight. But perhaps they underestimated the brain’s ability to reconfigure itself, or maybe our minds have many alternate pathways and the TMS brought some of them into use.
The ability to hallucinate is latent in all of us. When we take certain drugs like I did the night of my trip to Canada, chemicals get into the synapses between our neurons and trigger strange visions. People with psychosis also hallucinate, without any drugs at all. That happened to my mother—she saw demons and monsters when I was a kid. Her doctor called that “having a psychotic break,” but that clinical term does not even come close to describing how it felt to me, at age thirteen. It was terrifying. Those visions of my mother have remained with me all my life, and they probably deterred me from more enthusiastic experimentation with drugs. But the hallucinations I’d experienced weren’t because I had gone crazy, and no chemicals had been added to my brain. The only addition was energy.
Is energy alone enough to precipitate change? When I’d asked him, Alvaro certainly thought it was. “Think about our depression treatment,” he told me. “We are replacing psychiatric medications with TMS energy and getting excellent results.” That raises a new and vital question. If pure energy can change—and possibly “fix”—the mind, can the mind then direct the body to fix itself? That seems like a valid line of questioning, one that offers the promise that one day, medically validated energy-based therapy may supplant drugs for certain treatments.
In response to my questions, Alvaro shared with me his dream of creating a brain health centre at Beth Israel Hospital. Many of us exercise our muscles, but almost no one exercises their brain. Yet brain health is more important than the health of any of our muscles, except maybe the heart. Diet, activity, and many other factors affect brain health. “I believe a healthy brain will maintain a healthier body,” Alvaro assured me.
“A healthier brain would not necessarily prevent us from getting cancer,” he told me, “but it would help us to adapt better as we age, and that versatility will allow us to make the best of the bodies we have, for a longer period of time.”
We talked about what role TMS might play in brain health, and he described a future in which brain stimulation might guide a person’s brain down a more optimal path as his body aged. That sounded like some pretty high-level stuff, but he assured me it was possible. His words made me suspect that something similar was happening to me now. “Your brain is always optimizing itself,” Alvaro told me, “and we hope TMS guides it to do that job better.”
The delayed effect that I experienced really adds to the mystery. When we swallow drugs, we know some time is required for the chemicals to move into the bloodstream and from there to the synapses in the brain. So a delay of minutes to hours is not surprising when we take medication, as everyone who’s taken a pill has experienced. There’s also the issue of dosage with medication. You may need to take several doses to build up the chemical levels in your body to the point at which something happens. That might take a few days or even a week. And different people respond differently to doses of medication, just as they do with alcohol or drugs. One man’s gentle buzz is another person’s falling down drunk.
I observed that with the antidepressants Martha had taken. When she switched to a different drug, the pills wouldn’t seem to do anything at all for a week, sometimes longer, and then they would start working. Her psychiatrist would always warn her to expect that delay. When the drugs started working—if they did at all—the effects might be mild or dramatic. Waiting to see which would happen was always discomfiting.
There were times when Martha’s depression kept her from getting out of bed for days, and we wondered if TMS might help her depression, but the depression research trials had ended at Beth Israel and regular patient treatments hadn’t yet begun. Besides, she was somewhat frightened by the effects she had seen in me. Energy seemed like pretty powerful stuff—especially compared to medication that didn’t always seem to work—but perhaps it was too powerful.
Unlike drugs, TMS delivers energy directly to the brain, so we expected that its effects would be immediate. That was why the researchers wanted me to move quickly to do the after testing. But it didn’t really work out that way. Though there were days in the lab when I felt like I’d breezed through their tests after TMS, and other days when I struggled with every question, the immediate effects the scientists were trying to capture with their tests paled in comparison to the bigger changes that unfolded later. In some ways, a drug trip seemed to be an apt comparison. You swallow the drugs, and nothing happens. You walk around, and still nothing happens. You turn to the guy next to you and say, “Hey, man, this stuff is no good. Nothing’s happening.” Then all of a sudden you are on the floor, with long-fanged creatures swarming at you from the ceiling.
Alvaro said he’d seen a cumulative effect using TMS in other research, but the mechanism by which it happened was not fully understood. Later, Lindsay would tell me about homeostatic mechanisms that she called “emergency brakes inside your brain.” They keep our brains from changing too much too fast and becoming unstable. “Because of that,” she explained, “you need to slowly but surely shift the synapses in your brain to be more plastic in the direction that you are aiming for. These mechanisms won’t allow you to do it all at once to ensure that your brain has some stability.”
I had initially imagined the TMS energy as recharging a chemical battery in my head, but it’s not really that simple. Th
e TMS changes one circuit in the brain, and that alters two more. Those two affect ten others, and those change five hundred more. The interconnected effects are so complex that we can’t begin to fully map them with the level of technology available today. That process of sequential change must take some time and it’s a possible explanation for some of the delayed effects I experienced.
Everyone has seen how static electricity makes our hair stand on end, or makes paper stick to our sweaters. That effect is coming from excess energy that we pick up walking around. Something similar may happen, on a submicroscopic scale, inside our heads. When the TMS coil fires its pulses, the energy induced on the wires between our neurons may grab extra ions and pull them onto the biological wires between neurons. When that happens, other neurons may fire unexpectedly, and strange things like hallucinations may occur and new and unexpected reactions may be initiated. Current studies support this idea, and Alvaro, Lindsay, and I had quite a few roundtable discussions about it, but it will be years before such hypotheses can be tested and evaluated. When I recalled Alvaro’s broad hopes and objectives, it seemed as if he envisioned TMS as heightening my senses by suppressing the suppression. That is what I hoped was happening, as opposed to something bad or crazy. There were not yet any published studies of TMS and autism, but there were a number of professional journal articles on TMS and depression, and I scanned those for ideas that might be relevant to my own situation.
One topic I ran across was that of “sham” TMS, where research subjects were made to think they were getting TMS when in fact they were not. Sham TMS was often used as a kind of control, in an effort to determine whether a volunteer’s response to TMS was real. One depression researcher had written, “Most participants reported positive effects, but the ratio of patients reporting positive effects from ‘true’ TMS as opposed to ‘sham’ TMS was about the same. More study is needed.” That was the same thing researchers sometimes found in drug trials, where volunteers who got the placebo drug often reported positive effects. Essentially, those who got pretend TMS reported almost as much benefit from that treatment as the subjects who received the real intervention. I wondered what that might mean, and I realized there were several possible answers.
First of all, there’s a large body of evidence to suggest that belief in a cure makes a cure more likely, and more successful. Pharmaceutical researchers grapple with this issue all the time, as the success rate of placebos and real pills is often surprisingly similar. A few years ago researchers dismissed the placebo response as imaginary and of no medical value. Yet recent studies have shown the opposite: not only can the placebo effect deliver real lasting benefits, but the belief that something is making us sicker can actually lead to real deterioration, even death.
Saying “It’s all in your mind” used to be a way to dismiss unexpected effects, but all of psychiatry is in the mind, so that dismissal is not so relevant when it comes to how we feel. It’s possible that some of us went into the TMS study believing in its power while others were largely neutral and we were now having different experiences as a result. Michael thought that was so. My son wasn’t sure. He went into the study with a mix of indifference and curiosity. He noticed heightened colour and sound sensitivity, but he didn’t try to make anything of it as I had. He didn’t concentrate on pictures or music, and eventually the changes faded to invisibility. I couldn’t talk to the other participants to learn how they felt. Might something similar have happened in the depression studies I read about? When treating a disorder of the mind, “believing it’s so” might well be tantamount to “making it so,” in a way that’s dramatically different from treating chronic disease elsewhere in the body.
There was also another important difference when comparing the placebo effect in TMS and medications. In drug therapy, a placebo pill is truly inert. It’s flour, or sugar, something we know does not have curative properties. That’s not the case with sham TMS. Scientists create sham TMS in many ways, including by firing the TMS coil into space beside your head, firing it at a different area of your head, or firing it at a low power level.
The thing is, all those sham actions still have the potential for neurological effect. It’s more accurate to call them “different” TMS because many of the so-called sham techniques are still delivering stimulation to the brain, albeit to a different area or in different form.
The only way to do an effective sham TMS would be to have the TMS machine make a subdued noise and not deliver any energy at all. But the problem with that is that anyone who has experienced real TMS would immediately know something was wrong. TMS has an unmistakable feel—your facial muscles twitch in a certain way, and you feel the zap as energy hits your head. And I felt the meditative state—the trance—almost every time I got TMS in this study.
My own experience with sham TMS during the study left me puzzled. I didn’t know what it was when I experienced it, and I wasn’t shouting “It’s fake!” but I knew something was off and asked the researchers what had changed to make that particular session different from the others. Here’s what I wrote in an email to the scientists after receiving sham TMS in one of the later sessions of the 2008 study:
My first four TMS sessions were all eventful, each in different ways. Therefore, you may be surprised to hear that I’ve virtually nothing to report after the May 6 session.
In most of the prior sessions, I felt myself falling into an almost meditative trance. I’d sit there, with an essentially empty mind, for 30 minutes. Even though my face was twitching, I’d sit there, contented and tension free, and devoid of any internal dialogue.
Yesterday, I did not fall into that state. I remained alert, just as when I arrived. Even though I heard the noise, and felt my face twitch, nothing seemed to happen inside. I know what you’re thinking . . . there are no nerves in there to “feel.” I understand that, but somehow, I did “feel” other TMS sessions and the more I do it the more I pick it up. The expected feeling in my head just was not there, for whatever spot you hit yesterday.
On the way home, I did feel a slight headache, and I felt the tiniest bit of disorientation, but there was nothing in terms of either perceptible main effect or perceptible side effects.
If this was supposed to be another prime area, I’m sorry to disappoint.
No one told me it was sham TMS until later. All I knew was that it wasn’t like the other sessions. If I could recognize the difference—even without knowing why—it highlights a problem for researchers. Pills are pills; you can replace the real ingredients, but the experience of swallowing them is the same. TMS doesn’t lend itself to faking.
I certainly never felt like I was faking in any of my responses to TMS. But as dramatic as some of my experiences felt, I did wonder if I was going crazy and imagining things that were not really there. That was particularly true after the experience of feeling as if I could see into the souls of other people as I did at the Massachusetts Medical Society dinner, which came right on the heels of seeing into music and developing my newfound emotional sensitivity. Those were some of the most intense experiences of my life, and I had to wonder whether they meant I was acquiring superpowers, going crazy, or both.
There was precedent for that in my family. My mother had been absolutely certain of the demons and monsters that chased her to Northampton State Hospital thirty years before. Her younger brother—my uncle Mercer—had been discharged from the service and institutionalized after seeing things that weren’t there and having a psychotic break on a navy ship off the coast of Vietnam. The possibility that my experiences might be equally imaginary was frankly terrifying, especially since I could see that it ran in the family, with Mercer and my mom. None of the scientists ever suggested such a thing, but I still could not help wondering.
Validation of the reality of my experience came out of the blue with a mid-study phone call from Shirley. “I’m hoping you can help us,” she told me. “We’re not supposed to have participants in a study meet each other, but someth
ing’s happened. After you told me about the results of your most recent stimulations, and how you saw emotions and thoughts in the eyes of people around you, I waited to see if anyone else would describe a similar experience. We stimulated several of our other volunteers in the same area as you, and they didn’t report anything. Then today I got a call from a participant who was here for that stimulation yesterday and was beside herself with distress today. She described a lot of the feelings you told me about, but she wasn’t excited about them like you were. Instead she was quite upset. I wonder if you could talk to her, because you’ve had a similar experience but you felt yours was positive, and you might be able to give her some kind of comfort. She’s given me permission to connect the two of you.” With some trepidation, I agreed to give Shirley’s subject a call. “Great,” she told me. “Her name is Kim Davies,* and I’ll get you the contact info.”
I felt a little funny about that, because I assumed all the TMS study subjects knew who I was, yet I knew nothing of most of them. That was the result of me talking TMS on my blog and at lectures, as the public face of the programme, while the other participants were hidden behind a wall of medical privacy. The only participants I knew by name were the ones who approached me before or after they joined. And I tried to keep those contacts to a minimum so as not to influence anyone else’s experiences or expectations.
Shirley must have been very worried, otherwise she would never have allowed us lab rats to speak to one another about our TMS experiences, and I worried about what that might portend. I called Kim, and we agreed to rendezvous that evening at a café. I set out a few minutes later for our appointment. Though Kim and I had never met before, we picked each other out right away, and I could tell she was highly anxious. So was I, because I’d considered my TMS experience to be remarkable, but according to Shirley, Kim viewed hers as awful. All the way to the meeting I wondered if her TMS had unleashed some demon of the mind, and if so, whether something similar might soon be in store for me.
Switched On Page 14