My Experience with rTMS (repetitive Transcranial Magnetic Stimulation)

5 June 2008

I've recently had the privilege of participating in a study at the Harvard Medical School, under the auspices of Alvaro Pascual-Leone, MD, PhD, at the Center for Noninvasive Brain Stimulation in the Beth Israel Deaconess Medical Center in Boston. I've learned since starting the study (my first session was on April 9) that Dr. Pascual-Leone is not only one of the leading researchers in the world in this area, but he actually invented a lot of the techniques now in use (both for treatment and now being researched). It's truly an honor to work on the cutting edge of science, even if only as a guinea pig.

Much has been written on rTMS (repetitive Transcranial Magnetic Stimulation), and it is not my purpose here to discuss the technical end of it, but instead to give the impressions of what it was like for me to experience it, and to give a few educated guesses about where things are headed. I will give links to websites and blogs where readers can find more than enough information to satisfy their cravings for details of the process itself.

Dr. Pascual-Leone is featured prominently in Chapter 8 ("Imagination: How Thinking Makes It So") of the book by Norman Doidge, MD (a psychiatrist from Toronto), The Brain That Changes Itself. I had the privilege of meeting Dr. Doidge in Boston. More on that later.

I had first learned about this brain stimulation project back on February 24, when John Robison (author of Look Me in the Eye: My Life with Asperger's) arranged a screening of the indy documentary, Billy the Kid (the story of a high school kid with Asperger's) at the Elms College in Chicopee, Mass. Lindsay Oberman, PhD, one of Alvaro's co-investigators, was there to solicit volunteers. John urged me to sign up. I was skeptical at first, but I figured if he was willing to do it, so was I! It took a while to schedule my first session, because the researchers had been approved to test people between 18 and 45, and I am over 60. I wasn't clear who had to approve the age range expansion (whether it was the Beth Israel Clinical Investigations Committee or the funders -- the Nancy Lurie Marks Foundation and the National Alliance on Autism Research/Autism Speaks), but in any case, the approval was eventually forthcoming, so I went through 3 sessions, outlined here:

April 9: I showed up early in the morning (7:30 AM) for an MRI -- they needed a 3D map of my brain, for reasons that will be obvious later. I then took a few hours off to go to MIT to hear Governor Patrick give a talk on his economic policy at the Sloan School. It was a major press event, and the auditorium was crowded with dignitaries (many of whom I knew); I felt privileged to have been invited. (That's a story for another time; how a kid with Asperger's growing up in poverty, who went on to be a partner in a major Wall Street firm, came to be friends with a kid who grew up in poverty on the South Side of Chicago and went on to become Governor of Massachusetts...) I returned in the afternoon to partake in my first rTMS session. I was ably guided through all of this by Shirley Fecteau, PhD, one of Alvaro's collaborators, and the lead researcher in this particular study.
April 28: John and I arranged to be there the same day so that we could compare notes. I had a hugely busy schedule in between, traveling to Boston on April 15 to attend the Autism Awareness Day ceremonies. I then gave a talk the next morning in Springfield to a coalition of community health organizations who had asked me to explain the budget and tax system in Massachusetts. I went on to give another talk in Hartford at lunchtime to the Harford CFA Society about the foreign exchange markets. So, two talks about economics (my field) but on very different topics. The next morning I headed down to DC to participate in a very informative session sponsored by another group I belong to, the Progressive Business Leaders Network of Massachusetts. From there, I headed to Allentown, Pennsylvania to spend five days working on the Barack Obama campaign in the days leading up to the PA Primary. Hence the long gap between my first and second sessions. It was well worth the wait, however, because, as it turned out, April 28 happened to be the same day that a Canadian Broadcasting Crew came to film the work being done by Dr. Pascual-Leone and his associates, and they taped an entire rTMS session of mine, as John snapped photos. I mentioned Dr. Doidge earlier, who is based in Toronto. He was there with the film crew because they were creating a documentary based on his book. More on the filming in a moment.
May 2: I finished up with an IQ test and two more rTMS sessions.

Since John has written extensively on his blog about all of this, I will simply comment on some of his entries, and not try to duplicate the excellent technical description he has given. I will give links to his writings, accompanied by my own observations about what he has said, and then will share a few pictures that he didn't use, to illustrate some of my own experiences. We each brought cameras to the April 28 session, and took pictures with each other's camera, so the pictures you see in this post were taken by one or the other of us.

John first wrote about his experience with the lab on April 10, the day after I was there for the first time. He doesn't say exactly what day he was there, but I suspect it was not the same day I was, or I would have run into him. In any case, as I read it, he did only the preliminary work that day (MRI and baseline testing), unlike for me, when I did all of that plus had my first rTMS session.
John's next entry is dated April 17, and in it he addresses the issue of whether autism might (or should) have a "cure" as opposed to being viewed as a neurological difference that has its advantages (creativity, focus, acute awareness of detail, to name a few) and disadvantages (not being able to pick up on social cues, for example). He has long been opposed to the idea of a "cure" (as have I; both of us have expressed a reluctance, even horror, at the prospect of giving up our special talents in order to "fit in" and become what a friend of mine calls "dull normal"). The rTMS technique is already being used in Europe and Canada to treat such things as depression, Parkinson's, and other neurological disorders. Why not autism? Well, one reason to worry is that if neuronal pathways are changed in ways that bypass certain blockages that prevent autistic people from, say, using their mirror neurons effectively, perhaps this process will also short-circuit some of the pathways that lead to the wonderful creative genius or savant behaviors that people with autism often display. So far, John and I aren't worried about that too much -- we both feel there is the potential to unleash hitherto unused or underutilized parts of the brain without changing our basic nature. But that's why this is experimental, and we recognize we are taking some risk here, however small.
The next post of John's is dated May 1 and is entitled "Brain plasticity in action" -- it is mostly a letter he wrote to Alvaro and Shirley, explaining to them the after-effects of his second treatment. In introducing the letter, he states, "...the results I have seen are mind-boggling. It’s like science fiction, but for real." My feelings exactly. I did not experience as dramatic an effect as he did, for reasons I'll explain later. He talks about how his synapses (if that's the proper term, or at least pathways in his brain) had been reactivated after many years of being dormant, and he could "see" musical performance in his mind again, an ability he thought he'd lost.
John's most recent writing on the subject (as of the date of this post) was on May 12, when he wrote "A visit to the TMS lab, and some questions answered" -- I'll have some additional comments on that day, since I was there, too.
His latest post was dated May 30, in which he reproduces an essay written by one of the other participants in the study. I've gotten to compare notes with this person, and will comment on some of the similarities and differences in our experiences.

My first picture shows some of the equipment involved in the experiment. The large computer screen on the left displays four panels. On the upper left is a picture of my brain, with the eight colored dots, some of which are target areas for the rTMS. (I'm not sure what the other dots represent.) I believe the blue dot at the top is the first spot they tried, in my April 9 session. Then, the yellow dot, to the far right was (I believe) the first area they targeted in the April 28 session, the one that turned out to have the most dramatic effect for me. Later that day they did the same area on the left side of my brain, which basically offset the first session. On May 2, I believe they did the area represented by the purple dot, first on the right hemisphere and then on the left. But all of this is speculation right now, since the researchers tried to be close-lipped about what they were up to so as not to influence my reaction. I will find our more when Shirley returns from a short sabbatical in mid-July, and they hold a meeting open to all participants, when they will share the results with us.

The upper right panel shows a "target" that has as its crosshairs the place where the TMS "gun" (or coil, more accurately) is pointed relative to the target selected in the left panel. If the magnetic pulses are pointed exactly at the proper area, a black dot appears right where the red lines cross, as it does here. If I move my head, or the researcher (or assistant) moves the coil, the black dot will drift away, showing how it needs to be adjusted to bring it back to focus exactly on the desired spot in the brain.

The bottom two panels show red crosshairs that define in two dimensions (top view and side view) exactly where the TMS coil is pointed, and the black dot just mentioned is in the center of its target if the coil is lined up properly on both of these views. All of this is done, btw, by having a person carefully hold the coil where it belongs for an hour, so one researcher generally spells the other after half an hour has passed.

On the right table, you will see (besides my water bottle), another computer and a set of headphones with a microphone attached. They haven't told me yet why they recorded my voice, but since two of the three tasks they require after each session require oral answers, my guess is they are looking for such things as slurred speech, accurate differentiation between things like "green house" and "greenhouse" and perhaps emotional content of expression. The third task involves simply pushing buttons in response to short video clips, no words. John and the other participant describe all of this in some detail in their writings, so I won't say more at this point.

Here is a picture of John and Shirley, after I finished my session and John was about to begin his. Notice the absence of a pocket protector!

In preparation for each session, the cameras mounted on the wall in front of where I am seated have to be "told" where my head is, so they can locate my brain via the MRI map the computer has of my head. The silver wand Shirley is holding gets placed on the bridge of my nose and on each ear in a certain point and then is "fired" so the machine can match up its visual cues with its internal memory. You can see the antenna with 3 balls; there's also one on the TMS coil and one on the camera so that everything can be synchronized. "Science-fictiony" is the phrase that kept going through my head.

Here's Shirley giving me the full treatment. This was my second session of the day and third session overall (the one that was filmed by CBC), and was on the left side of my brain, unlike the set-up shown in the first picture above, which was taken during the same process on the identical spot on the right side. The black hose coming out of the TMS coil apparatus is a vacuum tube that carries away the heat of the coil.

Here's a close-up, with a better view of the coil, and you can clearly see that I'm wearing earplugs to help block the "popping" noise emitted by the coil. (That's the "r" part of rTMS!)

Next is a view of the whole set-up (notice the camera high on the wall). On the chair next to me is a plastic mouthpiece (like those used by athletes to protect their teeth). I was instructed to insert it and bite down hard if the TMS caused any discomfort, such as muscle spasms. Only once in the five sessions did I really need to use it, and I used it another time simply because there was a minor twitch caused by the pulses. Shirley explained that such reactions have nothing to do with the brain, but what was happening was that there was a muscle that was being inadvertently targeted at the same time, and it was responding to the electric pulses. It wasn't painful, but it was very annoying the one time it was really noticeable. It felt like someone was tapping my head with a small rubber mallet. One the other hand, the first session (on the top of the head) was so rhythmic and peaceful I nearly fell asleep by the end of the hour. It was only my interest in watching my brain changing colors that kept me awake. As the neurons became excited, the picture on the screen became vivid shades of yellow and green in the area being worked on. So it isn't all science fiction or the power of suggestion: something really is going on!

My final picture is one of Shirley being wired for sound by one of the CBC crew so that she could explain things as they progressed. The two of us were interviewed after my session, and they asked me to describe my experience. Shirley explained why I had experienced what I did (more details in a moment), and later told me she was very excited to hear that what I described was what they had predicted! At the time of the interview, she played the cool, impartial academician, simply explaining the technical details. She told me when I came back for my 4th and 5th sessions, "You know way too much!" They generally try to give as little information to their study participants as possible, so as to not influence their behavior/reactions.

To wrap this up, I'll make some comments comparing the subjective experiences of the three people I'm familiar with in the study (me, John, and the person who wrote the essay I mentioned). We all had very different experiences in some ways, yet there were some underlying common themes. In the Aspergian community, we have a saying (originated by Stephen Shore, and morphed into many different versions), "Once you've met one Aspergian, you've met one Aspergian!" The point is that the variation in personalities and skill sets of people with Asperger's is at least as great (probably greater) than in the neurotypical population, and so it's impossible (and dangerous) to make any generalizations about how people with AS will behave or react. So, it's not surprising that the three of us came away with a very different take on things. On the surface, we shared a common experience; yet the results and the subjective experiences were totally different! Without getting into a lot of detail, some of which is covered in the linked blogs I've already mentioned, the biggest difference I noticed in my experiences and those of the other two participants I discussed things with was my lack of attention to detail. In some contexts, I can pay so much attention to detail I drive my friends to distraction (I'm a very picky editor, for example). In this case, my energy was so focused on performing the tasks I was assigned that I blocked everything else out. One of the others noticed, for example, that the video clips we were shown were filmed in two different locations. I barely looked at them, instead concentrating on the spoken words because I was told to judge whether the statements "made sense" and to push the proper button. For me, it was a total auditory experience, and I did not even try to pick up any visual clues. Yet, why would they show video clips (it occurs to me now!) unless there was some information in them not available from a simple voice recording?

Another example is that John was fascinated by the equipment. Of course, a lot of that has to do with his engineering background, which I don't share. For me, I was much more interested in what the equipment was designed to DO and not in how it worked or what it looked like.

The experimenters told us that the effects of the rTMS that we underwent would be transient, lasting no more than a few minutes after each hour session. All three of us disagreed. We all agreed that a permanent transformation (however subtle) came from the second session, the suppression of the right-hemisphere point opposite of the language center (I'm still not clear what that region is called, if anything). Shirley explained (during our CBC interview) that by suppressing that region, the equivalent center on the left side of the brain (which is used for language and cognition) had to work harder, and that is why I felt alert and particularly skilled at performing the computer tasks following that session. Then, in the next one, in which they suppressed the functioning of the language center, I came away dull and confused and wasn't feeling particularly confident that I was answering the questions correctly. I had to think really hard before responding, even to simple tasks, like identifying drawings of common objects. Interestingly, when I described this feeling to the CBC interviewer, he said, "That's odd, because I was standing looking over your shoulder as you took the test, and you got the answers faster than I did!" So, maybe it was more a subjective feeling of sluggishness than an actual dampening of performance, though I can say for sure that I blazed through the tasks in the session before -- that, I think, was not subjective.

I also got to talk with John's "mate" as he calls his wife, and she commented both on how John had changed and also her fears that he might change too much!

One interesting thing was that each of the three of us experienced different time delays before they applied the counter-measure to the right-side treatment (the opposite, by dampening the language center). For me, it was only an hour between sessions, while I waited for John to have his session; my next and third (left-side) rTMS was the session the CBC crew filmed. For the other participant, it was a 24-hour gap. For John, he had 2 sessions on his first day, ending with the one that left me feeling alert, and he drove home after that and didn't come back for several days. The thing we all felt in common after the second session was the opening of pathways that we either had not been able to access for a long time or maybe even ever.

In John's case, as I mentioned (and is described in his blog) he was able to "see" music (more properly, the full extent of his musical experience); an ability he thought he's lost when he'd stopped hanging around with rock bands. He played some of his own recordings in his car on the way home, and he was able to visualize the scenes from many years ago during which these recordings were made. He hadn't been able to do that for years. For the other participant, it was a less specific, but nonetheless dramatic change; a transition to a state of being more peaceful, less stressed out, more alert, and so on. For me, it was the same, though for a shorter period of time. I felt mentally all-powerful, like I used to feel when years ago, when as a student and a new job applicant, I took standardized tests all the time. I always did very well on those tests, usually scoring at or above the 99th percentile. I thought I had lost that edge, because when I took the two IQ tests recently (one at MIT and one at Beth Israel) I got almost identical (low, for me) scores; only in the 98th percentile -- a failing mark by my previous standards! Yet, when I was doing the computer tasks right after that second session, the questions couldn't come fast enough, and I was absolutely sure I got the right answer every time!

The amazing thing was that, as we were comparing notes, we all three agreed that whatever had happened in that session has lingered on, despite what the research team told us. John mentioned a general feeling of wellbeing; a lower overall level of anxiety. The other participant felt more focused and more self-aware when dealing with fellow employees, for example. John said he is now able to make eye contact for the first time in his life. Real eye content, not just faking it by looking in the direction of people's eyes. I could see the difference in him. He wasn't making this up. As for me, it's very subtle, but very noticeable. I have less fear of the phone. I got a phone message the other night, from a healthcare provider looking for some information for the insurance company. In days gone by, I would have agonized over finding the information, and then over calling back. Instead, I looked up all the data points re my medication, visits to psychiatrists, etc. that he was asking for, and called back within minutes of receiving the message. That may not seem like a big deal to most people, who probably do this sort of thing all the time, but for me it's HUGE! I feel like my executive function is on the mend.

Another example of increased executive function: I've been talking about my needed medical appointments for many months now; dentist, annual physical, dermatologist, and have been wondering who I can get to help me make appointments. A friend told me she was going to see the new dermatologist in town, so I asked her to make an appointment for me. Then she went and had a car accident and I never got my appointment! So, this past week, I made appointments with all of them. All on my own. I'm getting my teeth cleaned and checked. I'm getting a physical later this month. I had to wait till September for an appointment with the dermatologist, but that's okay since I don't have anything bothering me -- it's purely cautionary.

Now, granted, I did this in person, not on the phone, while I was out running other errands; the point is that I DID IT! And how is it that I attribute this to the TMS? I can't tell you that, any more than I can explain how it is that I understand the Black-Scholes formula better than Myron Scholes does. I can tell you they are related, however. And that after only an hour's session that was counteracted an hour later, both of which were advertised to be ephemeral. Imagine the potential this stuff has as a treatment! Well, I guess we'll know in another month or so when they assemble us to reveal the test results and talk about next steps. Meanwhile, I'll be participating in a different study re plasticity potential this month. Science beckons!