Too Good to Be True: How TMS Damaged My Brain
By James Hall
I am a 37-year-old father of two and husband to a fantastic wife of 15 years. For at least as long, I have struggled on and off with anxiety and depression. Throughout, I have managed them through counseling, diet, and exercise. I have tried antidepressant drugs several times, but they have never done anything for me except make the situation worse. Despite my mental health issues, I had nonetheless been able to contribute meaningfully to my family, my community, and my work in a high-level corporate job.
About a year and a half ago the biggest threat to my stability came not from my anxiety and depression but from a new form of treatment called transcranial magnetic stimulation, or TMS. The Mayo Clinic website describes TMS as “a noninvasive procedure that uses magnetic fields to stimulate nerve cells in the brain to improve symptoms of depression.” They make it sound simple enough: “An electromagnetic coil is placed against your scalp near your forehead. The electromagnet painlessly delivers a magnetic pulse that stimulates nerve cells in the region of your brain involved in mood control….” Based on my experience with it, nothing could be further from the truth. TMS not only has not improved my mental health but also has robbed me of some of the most important things in life. As it stands, there has been little to no research on or awareness around the negative side effects that TMS can inflict. This must change and is more important than ever as this treatment continues to grow in popularity.
Hoping for a “Breakthrough”
My introduction to TMS occurred by chance, during a regular checkup with my primary care doctor. As a part of the checkup, I filled out a questionnaire on depression. At the end of the visit, he asked me, “How long have you been feeling depressed?” After I told him about my history, he brought up TMS, describing it as a breakthrough treatment that did not involve taking a pill. He told me that he believed one day soon, every doctor’s office would have one of these machines, with which they could simply and effectively treat their patients for depression. Having witnessed the horrors of medications firsthand, I was very intrigued and excited about a treatment that could positively affect the brain without the use of a toxic pharmaceutical. My doctor told me to look up Neurostar because it was the “gold standard” for TMS machines.
I left the office that day filled with an unexpected hope that I might find relief from my long-standing battle with depression.
I went home and immediately started researching TMS and Neurostar so I could better understand the treatment and then talk to my wife about it. The first thing I found was a newly opened TMS clinic on the other side of town. That was one hurdle down. Next, I found quite a bit of information on the procedure itself, all positive, with a lot of documentation and testimonials about how it was possible to achieve a miraculous and long-lasting remission from depression. The success rates I found were as high as 80 percent; others stood at around 60 percent. It seemed to validate what I had learned from my doctor.
Next, I researched the potential side effects. I visited several different sites, including Neurostar’s homepage. The side effects listed seemed pretty minimal to me: headaches, lightheadedness, burning sensations on the scalp, and in extreme cases seizures. But these were all said to be temporary and should not last any longer than two to four weeks after treatment. That afternoon, I discussed all my findings with my wife. She admitted she was apprehensive but begrudgingly agreed that I could go down and have a consultation. The next day, I called the clinic and scheduled my first visit.
At the initial appointment, I met with a psychiatrist who asked me about my current and past mental health issues as well as the medications and different treatments I had tried. After we talked through my history, he said I would be a good candidate for TMS. I asked about the risk of seizure. He told me that the only real risk of seizure was at the initial “mapping” session on the Neurostar machine when they discover my “motor threshold,” which is the point at which the electromagnet elicits a physical response from your body. Also, he said seizure was extremely rare and that he had neither heard of nor encountered them in TMS patients.
Then he introduced me to the staff and technicians. I asked them the same questions about side effects, and they all confirmed independently the same risks that I had read about online and reviewed with the psychiatrist. I also signed paperwork that included disclosures saying that I accepted those risks without mentioning any others. The staff offered to set me up with my first appointment the next day and I agreed. Although I was a bit nervous, I was excited at the potential of curing myself of depression at what seemed to be very little risk. I will admit: It did seem too good to be true. But I rationalized away my doubt, believing that modern medicine was now so advanced that this kind of treatment was possible.
So Far, So Good
The first treatment was a mapping session. They set me in what was similar to a dentist’s chair with a large articulating arm on its left side, which was attached to a large computer with a monitor and user interface. Then they moved the articulating arm up to my left temple, so it rested within a few millimeters of my head, handed me hearing protection, and started the mapping. The machine was activated and ran pulses of electromagnetic energy through the tip of the arm that was pointed at my left temporal lobe. It made loud clicking noises while it ran for a number of seconds before stopping for another several seconds and then started up again. Each time they ran the pulse they observed my hands to see if I flinched or seized.
By doing this, they were looking for the best arm placement for the machine against my head so that there would be no motor response from my body. The flinching sensations I felt were disturbing, but not particularly unpleasant, so I did not worry. After about 20 minutes, the technicians were satisfied and said the computer would remember the custom settings for me so that when I came back the next day, I could just sit down and get started. From that point on, each session would last about 25 minutes. We scheduled sessions for five days a week over the next three months. It was a big time commitment, but it was worth the proposed payoff.
The next day I showed up, feeling a bit nervous and unsure of what it would be like to get a full treatment. I also felt a bit of hope that I might go home feeling better that night. The staff was friendly and made me feel very comfortable. We chatted while I got set up in the chair with hearing protection, just like during the mapping session. They fired up the machine and set the articulating arm up to the same spot on my left temple. The tech let me know she was going to start, I agreed, and the machine began clacking away at my head. In all honesty I felt nothing but a bit of an uncomfortable tingling or snapping sensation at the site where the arm was closest to my head. At the end of the session I was pleased that I had felt nothing remarkable.
The tech asked me, “How do you feel?”
I thought about it and replied, “I feel great… a bit lightheaded, but not bad.”
She said, “Great. Now, if you feel comfortable with that, we will turn up the intensity next time. You are at 50 percent and we need to get you up to 110 percent, which is the therapeutic dose.”
I thought, What the hell is going on here? They had not told me anything about having to raise the intensity of this thing. Still, I told the tech OK and left, feeling a bit put off. But then I thought: That session was not so bad, so the next one would be fine.
The second session was the same as the last but they “turned up the intensity” by 5 percent. We settled on the 5 percent out of my instinct to be cautious. They actually asked me how much I wanted to turn it up and said they could go as high as 10 percent each session and that the faster we got to 110 percent of my motor threshold, the faster I would feel better, having gotten the “full therapeutic dose” for longer. This made sense and I wanted to do the full 10, but I had no idea how different that would feel. My instincts nagged at me, and in hindsight I realize that my gut was saying: “If bumping it up by 10 percent was easy, they wouldn’t ask you if it was OK. They would just do it.”
We went through the same procedure at the additional 5 percent intensity. At the end, they asked again, “How are you feeling?” This time, I was a little more apprehensive with my answer. I said, “I am feeling pretty lightheaded… Is this going to get worse? Does everyone get this lightheaded?” They replied that it was normal, temporary, and that there was nothing to worry about. They also said that the feeling typically goes away after the first two weeks. I thought about it for a moment and likened the sensation to having had a few beers and decided, “No big deal, they are probably right.” I would be driving myself home, though, and considered whether driving feeling like this would be a good idea. I felt that different.
After a full night’s sleep, I returned for the next session. I still felt a bit lightheaded, but I was confident that what they were telling me was true and this would all go away after I got through the first few weeks of TMS.
This time, I had my wife drive me to the treatment facility. We repeated the treatment and only turned the intensity up by 5 percent again. By that point, I had built an excellent rapport with the tech. I decided to ask her whether anyone had ever quit because it was too unpleasant. She told me about just one gentleman who’d stopped going because he could not take time off work while receiving the treatment. I considered my own situation. I had the ability to take time off work as necessary, so I did not think that would become an issue. I also asked her if she had seen any side effects that were not mentioned or things she thought were suspicious. I believed her when she said, “No.” She had had one other patient who’d quit because said he did not benefit after a month of treatments, but that was it.
When my session was complete, the tech asked me the usual question: “How do you feel?” I gave the usual answer. I explained to her that I felt lightheaded and almost intoxicated. She again dispelled this as normal, and I left believing her. My wife drove me home, and I am glad she did as it was clear to me now that I should not be driving in such a state. At the time, I would describe the lightheaded sensation using words such as intense, ethereal, intoxicated, fuzzy, or off. Other times I would say that I just felt dumb.
The next session or two followed the same pattern until I was strongly encouraged to turn the intensity up by 10 percent so that we could get to the “therapeutic” dose on schedule. I agreed and we bumped it up. The lightheaded feeling intensified. It was very unpleasant, but feeling like that put me into a kind of drone state. I figured I would just go through the motions of life until I started feeling better.
I finally got to the full therapeutic dose and asked the staff when I would start to work my way out of this lightheadedness I was experiencing. They replied that I should begin to get back to normal after about a week at this dose. I trusted what they said and eagerly awaited my return to normalcy. I went through another week of treatments but I felt the same after every session. The lightheadedness persisted at all times and through everything in my life, including my work for a Fortune 10 company, which I had been managing to complete from home.
Things were slow at work, which really helped. I know that if work had been moving at full pace, there would be no way I could perform my usual function as a software and database administrator. Just in case things took a turn for the worse, I let my manager know that I was receiving medical treatments and that I might have to take some time off work if I experienced serious side effects. I wasn’t too worried, though; I’d worked for the company for some 15 years and had received excellent evaluations.
When that week had passed, I still felt the same and had the same conversation with the treatment staff about when my side effects might subside. They changed their story a little bit this time, telling me that some patients feel lightheaded through the end of treatment, but that it was always temporary and should let up soon. This news raised some red flags for me, but with everything I had read and everyone I had talked to, I truly believed them. After all, I was just undergoing a magnetic pulse that stimulated my brain’s neuron activity. How could that cause any long-term problems?
Disturbing New Symptoms
I continued the treatment with no relief from the side effects for the next few weeks. Then one night while I was sleeping, I heard the fire alarm go off in my home. I shot up in my bed, scared as hell. My wife was still sound asleep. I scanned the room, frantic, looking for smoke or light from a fire, but saw nothing unusual.
I quickly shook my wife awake and began yelling at her: “Get the hell up, the freaking fire alarm is going off!”
Her eyes opened wide and she said, “Honey, it’s OK! There is no fire, the fire alarm is not going off.”
I demanded, “What the hell is wrong with you? You can’t hear that? Are you deaf?”
I felt scared because my gut was starting to understand that something was wrong within me, although my conscious mind had not figured it out yet. She asked, “What do you hear? There’s nothing there.”
I replied, “What? You can’t hear that? That screaming sound, it’s like incredibly loud ringing.”
She said, “No, there’s nothing there. It’s OK, your ears are ringing. You have never had that before? It happens to me all the time.”
The pieces of the puzzle started filling in for me, but by now I was absolutely terrified. I was experiencing intense tinnitus. I managed to calm down and fall back asleep after some time. The next morning, I still had the tinnitus, but it was not as intense. That day at my treatment session I brought up the sound to the clinicians there. They said that it can happen but again assured me that it would be temporary. I felt so thankful. Because my wife had experienced tinnitus before, I figured it was not a big deal. I learned to cope with it and just moved forward.
After I developed tinnitus, some other minor symptoms came and went as well. I would have dizzy spells and bouts of nausea that had never occurred previously. Before this, the only time I’d ever become dizzy was after I’d spun in circles playing games with my kids or going on a carnival ride. I had only ever experienced nausea in tandem with eating bad food or having the flu. These were side effects of TMS, and when I brought it up in treatment, I was told that it happened, but it was just temporary and would subside after treatment at the very latest.
Soon after these symptoms developed toward the end of my treatment, I had a regularly scheduled teleconference meeting with my boss at work. Skipping the formalities and without warning, he told me he was letting me go. When I asked if I had done something wrong, he told me no; there was no cause. Then he briefly answered a few questions and hung up. It sent me reeling. I realized that in less than five minutes, I had lost a job at which I had worked painstakingly for the best years of my life.
I comforted myself by assuming mine was part of a larger layoff of many people in my department, so I asked a few friends still working there about it. They all confirmed that I was the only one. I later learned I was replaced about a week later. Clearly my management team perceived my disability and moved quickly to remove the problem.
I am a pretty pragmatic character, and after I recovered from the initial shock of being fired, I was actually glad I did not have to worry about work anymore and was looking forward to the new possibilities of a life free of depression. So I finished out the TMS treatments without any change in my side effects, even though I still hadn’t gotten any relief from the symptoms that led me to TMS in the first place.
When my TMS treatments were complete, I had an exit interview with the center’s psychiatrist, during which we discussed my marginal results. He seemed to think that I might continue to improve for weeks after my treatment. At this point, I had one burning question for him. When would my side effects let up? I was not even concerned that my depression had not improved. I was so tired of being lightheaded and impaired every minute of every day for the last three months; that is all I could think about. He told me the same thing that all the literature and all the techs had said: “It should dissipate in two to four weeks.”
I then asked him, “What happens if it does not?” He responded that the only reason it wouldn’t is if I had developed a different neurological problem during treatment that was unrelated to TMS. If that occurred, I should go see a neurologist. The small red flag that had been raised at the back of my head from the beginning began flapping in the wind of the now-barren landscape of my mind. No distractions, no doubts, this was it: They were washing their hands of me. In all likelihood, I had made the gravest mistake of my life in trusting them with my mental health.
So I waited. Week after week, I waited for my normal brain function to return. I wanted my sharp, witty mindset back so I could begin my life again. It did not return, and I began to notice more peculiar things about myself besides just feeling drunk or hungover all the time. My short-term memory was kaput.
For instance, one morning I was putting ice into a cup from the dispenser in the freezer and overdid it. Ice cubes spilled out and filled the exterior tray on the front of the fridge. I figured I should set my cup down, turn around, and then clean up the ice. Instead, I got distracted, forgot the ice, and by the time I remembered it, it had melted and made a mess on the kitchen floor. My wife noticed and said, “What happened here?” I told her and said that I would clean it up now. I grabbed some paper towels and started soaking up the water. Then I left for just a moment and did something else. About an hour later my wife approached me again about the mess in front of the fridge and I asked her, “What mess?”
Prior to my TMS treatment, I was a “Type A” personality. I hadn’t left a mess out since I was 10 years old, so this was an extreme deviation from my previous behavior and cognitive ability.
The other change is that I can no longer multitask. If I am doing something and someone talks to me, I forget what I had been doing. If one person is talking to me and another person comes up and begins talking at the same time, I cannot make out what either one of them is saying, even if I focus hard. If there are any distractions in my environment it is now extremely hard, if not impossible, for me to stay on track.
After two months, when I was sure these symptoms were not letting up, I scheduled an appointment with a neurologist. He was very aware of what TMS is and had been to a conference on it. However, he too thought my symptoms would dissipate. To rule out any other factors, though, he ordered an MRI of my head. When that came back clean, he ordered EEGs, bloodwork, and neuropsychological testing. All the results came back normal except for the neuropsychological testing, which showed MCI, or mild cognitive impairment. Almost all of my mental processes were now below average: Storytelling, recall, and cognitive shifts (multitasking) were impaired. At least now I had proof.
After I better understood what had happened to my mind, I went to see an ENT (ear, nose, and throat specialist) and an audiologist. More testing ensued and the doctors diagnosed me with tinnitus and high-frequency hearing loss. Furthermore, they told me that I am one firework display away from major hearing loss. Their solution was that I should wear two forms of hearing protection whenever I am in loud environments.
By this point, almost half a year had passed, and I felt no improvement. After talking to several different doctors, including some of the best in my state, I was left empty-handed. I continue to search for ways to heal myself and recover from a new treatment whose disabling effects modern medicine has no defined way to counter. When you are taking an anti-depressant or other pharmaceuticals, you can stop taking the pill and your body will naturally flush the chemicals out of your system in time. With TMS, there is no way for your system to do that. All you can do is wait for your brain to adapt as it attempts to restore the damage done by the electromagnetic pulses forced through it. Little to nothing is known about how that process might work, much less how to hasten it. I have talked to quite a few medical professionals who deny that what happened to me is even possible.
Finding the Others
After I learned about the damage TMS caused, I felt desperately alone. My mind turned to the fact that this “treatment” is being performed on so many others, and some of them likely wound up damaged like me. I searched online often but could not find anyone else in my situation nor any documentation for the type of side effects I experienced. I even found research showing that TMS could be used to improve memory and cognitive function. This was vexing, but I could not think of anything I could do about it.
One day, I finally searched with the right phrase, and a TMS forum came up in my results with a specific thread on memory loss. There it was: Years ago, someone had posted that they were having problems with their memory after receiving TMS and could not even remember their wife’s name. I continued to read and found there were many others like us, not only with memory problems but also suffering from other physiological symptoms including tachycardia (rapid heartbeat), numbness, tingling and burning throughout their bodies, detached retina, and loss of control of facial muscles, to name a few. There was also a theme of new and worsening depression, as well as new, extreme anxiety so severe that it had led to a suicide.
After reading these stories, I understood that something very wrong was occurring and being swept under the rug. These symptoms were devastating, yet they were not being disclosed to prospective patients. After additional research, I discovered that these types of symptoms and events have been reported to the FDA for years. Furthermore, the FDA itself has reported these events to the device manufacturers, yet the manufacturers have done nothing to inform patients about them. They are not disclosed on the consent forms we’re asked to sign nor presented in any literature. It’s not on the manufacturers’ websites, not in the materials provided to the clinics that utilize the devices- nor anywhere else I’ve looked.
Let’s be clear: The manufacturers are perfectly well aware that their devices are ruining the lives of some of their patients, yet they do not inform them of the risks of this procedure, no matter how remote this type of harm is thought to be. They advertise TMS as a risk-free or super-low-risk treatment option and it is even described as such on supposedly objective medical websites. This is simply not true, and the damage is amassing every day.
Today my mission is to inform anyone thinking about undergoing TMS about the real potential side effects of the treatment. I am also trying to provide a community for those suffering from the un- or minimally-documented side effects of TMS through a members-only Facebook group, Victims of TMS Action Group (VTAG). If you know of anyone who can benefit from further information, please tell them about us.
The most important lesson I have learned from my experience with TMS is that the mental health community must approach pharmaceutical and device treatments with the highest possible level of skepticism, trusting our instincts when making decisions about our own care. The stakes are just too high and the protections needed are not yet in place to preserve the health of our communities.
My story is but one of many, some of which are truly harrowing. You can read more testimonials on the negative effects of TMS on VTAG as well as this Reddit discussion page and in this blog by psychologist Phil Hickey. You can also search the FDA’s MAUDE database: Enter “Transcranial Magnetic Stimulation” in the “Brand” field and set the search dates to between 01/01/2004 and the current date.
James originally hails from the Pacific Northwest and enjoys spending his time eating well, exercising, and exploring the outdoors with his family. After years battling with his own mental health, James is passionate about having open and honest discussions about the realities of mental health treatments in America.
Originally published at https://www.madinamerica.com on April 21, 2020.