Seizures and Constant Headaches: My TMS Experience

For most of my adult life, I have been trying so many different ways to cope with depression and the demons of my past that still haunt me. I have been on multiple medications, seen multiple therapists and psychiatrists, and read every self-help book I could find. None of these attempts to heal would change my life the way that TMS did—and not for the better.

Since November 2019, I have been struggling with depression to the point of making suicide attempts leading to hospitalizations.  I was at the point of going to an inpatient facility or trying something new that might help me. I was definitely at the end of my rope. Earlier that year, my psychologist had suggested that I get in contact with a psychiatrist she had met who was working in the field of Transcranial Magnetic Stimulation (TMS). He had a private clinic and she had just toured his facility.

So I talked the idea over with some friends and family and decided that I would try TMS and do all I could to make the treatment work for me. I even went so far as to take a loan from someone close to me to cover the cost of the treatments and the drive to and from the clinic, a three hours-plus round trip. I have always been a realist, but this technique sounded like it might help me, and I felt myself becoming almost hopeful for positive results.

I had my first appointment with the psychiatrist, during which he performed an extensive background interview resulting in his approving me for treatment. He said that I had a high chance of seeing great results and told me the side-effects were so minimal that he’d felt confident allowing his own daughter to become his first patient. After doing TMS, she had had a huge decrease in depression and anxiety, he said. I agreed to start the sessions on a Thursday and so I set up an appointment for the mapping session, during which they would identify the section of my brain where they would target the treatment and determine the level at which it would be applied.

Looking back, I sensed that there was something wrong on the very first day. I was seated in the chair and they started to take measurements and put the magnetic coil and headpiece on my head. To say that my anxiety spiked was an understatement, but at that point, I had completely bought into the process, so I toughed it out.

The psychiatrist stated that he was looking for movement in my thumb so that they could determine the intensity needed for the “therapeutic threshold.” The pain in my head that I felt during this session was minimal in comparison to what I’d experience in the future, but something intuitively didn’t feel right.

Nevertheless, I continued to seek treatment. The second day they started at 50% of my tolerance and told me that my anxiety was deterring my ability to reach the proper threshold. In other words, I was too nervous and I would need to calm down if the treatment team was going to be able to increase the intensity to reach therapeutic levels of TMS. I tried my best to tolerate the intense, jolting pain, but on the first full day, I just couldn’t get myself to let them bump up the strength. It took three sessions to get to the point where they said I was at my limit. No words could ever be more literally true.

I drove myself home that day, and the usual 1.5 hours one way took over three because I had to keep stopping. From the pounding headache and light sensitivity to the decreased concentration I was having, I was no match for driving on the highway. I called my aunt and told her I didn’t know what to do, that I sensed the doctor and technicians were judging me, and that I felt like a failure. I have a self-deprecating side anyway, but this experience made me feel like I was wasting my time and money.

Still, I had taken a medical leave from work and was committed to completing the sessions. I had resigned myself to a severe decrease in income in hopes of finding some relief. At the time of the treatments, I was staying at a friend’s house because I was afraid to be alone. I was still depressed, anxious, and in pain.

As I continued to pursue my TMS sessions, I constantly asked the people administering treatment if it was supposed to get better. I wasn’t sleeping, and I had a persistent headache. I told them that when they placed the helmet on me, it felt as if an ice pick were jabbing me in the temple, with the pain radiating all the way to the middle of my forehead. They reassured me that it would get better and that I should just take a Tylenol before coming in to decrease the pain during treatment. I should have stopped it right there, but I was so desperate and wanted to believe TMS could be the thing that helped me and changed my life.

The pain got so bad one day that I called the psychiatrist from the parking lot after a session.  I had left the office but didn’t feel right about driving yet.  He was “too busy” to be seen when I was inside, but he did return my call then. I started crying and told him that I didn’t know if I could make it through and wanted guidance. Was this for me? Was I a good candidate still, even with the intense headaches? He said that I was only a quarter of the way through the treatment and promised that it would get better day by day.  I again believed him, made the trek home, and tried again the next day.

During the course of treatment, despite being on short-term disability, I was still working half days, leaving at lunch to drive to the clinic, then coming back to crash and try to get rid of the resulting pain before work the next day. In my second week of TMS, I even had to skip a Friday appointment because my headache was so bad from the previous day’s treatment. They just told me to come in Monday and we would add the day to the end of treatment.

Business as usual for them. For me, it felt like a crushing defeat.

Still, I felt that I had to push through, that I would be letting everyone down if I quit. I had attempted suicide the previous month, so I felt like I just couldn’t let my family and friends believe I had given up again. Since I had taken that loan, I felt that I owed it to the person who gave it to me to keep trying.

Also during the second week, I started to bring my service dog, Bodhi, to my TMS sessions. Having him there definitely decreased my anxiety but did nothing for the physical pain that I was enduring. He could tell I was in distress and was very alert to my pain during treatment, nudging me by placing his paw on my lap and trying to raise my hand with his head.

Bodhi was trained to help me during panic attacks, has also gone through scent training, and is pretty accurate in “alerting” to me; he knows me better than I know myself. I put him through a lot of sleepless nights as I suffered through panic attacks, night terrors, and endless bouts of crying before and during the TMS treatments. I didn’t know that he would be put to the ultimate test during my final round.

I don’t remember much about my last treatment. At that point, I had had only 10 sessions under my belt. I was supposed to get a total of 36. However, during this particular session, I had a grand mal seizure, which put an end to my treatment altogether.

I was hooked up to the helmet and was in the process of receiving the magnetic pulses (which felt like shocks) when Bodhi really started alerting on me. I thought that he was just picking up on my stress, so I tried to pet him and reassure him that I was fine. The pain that day was pretty intense. I remember asking the administering person if they could turn it down and also biting my cheek hard during one of the “shocks.” She told me that some people use mouth guards to protect against that. So once again, I thought there must be no problem; I was just being a baby.

The last thing I remember was grabbing Bodhi’s leash and then trying to tell the administrator that I didn’t feel well.

I woke up to find myself surrounded by paramedics and feel Bodhi lying on my lap. They told me that I had had a seizure and had been in full grand mal for 45 seconds to a minute. They recommended transferring me to the ER right away, and I complied, even though I rejected the idea initially because I was worried about how much an ER visit and ambulance ride would cost. Thankfully, my dog was with me through it all, showing that he was up for any test that I could put him through.

At the hospital, I was given a CT scan and an EEG, and later told to follow up with a neurologist, which I have been doing ever since. My EEG came back abnormal. I also received a new diagnosis: epilepsy.

I am now trying to understand what life is like with a seizure disorder and have to take antiseizure medication. Before the TMS treatment, I had never had a seizure in my life. After TMS, I have had more than five in the past month and a half. The last one occurred at work. So now, besides having lost money and time from my job, I have lost my sense of security and feeling of confidence in doing the smallest of things. I worry that now I am a ticking time bomb, just waiting for the next seizure to hit me. Besides this, I have not gone a day without a headache since I started TMS treatment last August. And I still suffer from fogginess, trouble concentrating, and can no longer drive due to state laws.

TMS has indeed changed my life. It was supposed to be a saving grace, but instead has been nothing but a nightmare.

One silver lining is that I found an online group of people like me who have had negative effects from TMS. It feels good not to be alone in this, but it is also disturbing to see that so many people are suffering short- and long-term side effects from this treatment. Many of these people, like myself, went into it with confidence in their doctors’ recommendations and did everything they could to make it work. Like me, they were desperate, looking for an answer, seeking something to switch their path and take them in a different direction. None of us knew that this direction would be so life-altering.

I want to make sure that people know my story and listen to others who are having the same issues. TMS is an FDA-approved treatment option for people like me who have had treatment-resistant depression symptoms. We trusted it and believed our doctors. Doctors have to swear an oath to “do no harm,” but I just don’t see how they can keep that oath and knowingly persuade people at their darkest of times to do something that might damage their livelihoods and quality of life. My life is different now, for the worse, so persistence and the will to get better will have to hold me together so I can keep fighting and keep moving forward. I am trying to work with a lawyer to learn my options.

And the TMS facility? Haven’t heard a peep from them.