First, let's address the cascade of positive information about TMS that can be found online. It's a TMS utopia out there, and while I am not arguing if TMS was right for you or your loved one, I am writing this post to share my story and how TMS was NOT right for me. The moment I realized it did more harm to me than good, I felt shocked, saddened and quite frankly sickened.
Please Note: I am in no way bashing candidates that had successful TMS results. Rather, I am spreading awareness about possible adverse effects to counter the overwhelmingly positive internet search results. TMS did not work for me. In fact, I had serious consequences after only three sessions, and I believe these need to be discussed, studied, and readily available to those considering it as a treatment option.
So what is TMS? Is TMS therapy for Depression only?
If you are unfamiliar with TMS, please read: TMS is a procedure in which a technician uses a device, containing a magnetic coil, to send electromagnetic pulses into a specific area of the brain. The idea behind this is that electromagnetic stimulation of brain cells will encourage neural rewiring. After an initial brain "mapping" session, the typical time commitment for treatment is about 56 sessions over 6 to 9 weeks. During each session, 3,000 electromagnetic pulses will be sent through the brain in under 20 minutes. These pulses are broken up into pulse pattern groupings with several seconds of rest between pulse groups. These electromagnetic pulses have a frequency of 1 Hz (1 pulse per second) or high-frequency pulses at 5 Hz to 10 Hz (5 pulses per second to 10 pulses per second) depending on the settings. The strength of these pulses also vary from 1.5T to 2T (T = Tesla).
During my treatment, the staff placed the device on my left prefrontal cortex about 5 cm superior to my motor cortex (the area of my motor cortex which controls finger movements).
Why TMS?
You might be wondering what led me to seek TMS in the first place as you may find a lot of literature discussing the 80% success rate for anxiety, depression, and OCD. Well, for the past five years I have been working with a few different therapists. While living in Spokane, WA, I was working with a therapist that specialized in Eye Movement Desensitization and Reprocessing (EMDR). Basically, this method of treatment allowed me to access a REM-like state where I could process my traumatic memories and experiences. After we moved to Vancouver, WA, I sought a therapist specializing in talk therapy to help me work on my communication skills, boundaries, and overall thoughts and interpretations of life challenges. Both therapies were tremendously beneficial for me, and each therapist was exactly who I needed at the time. My talk therapist recommended I seek a psychiatrist to help work on stabilizing my mood. From what she observed, I had a cyclical nature of depression that could not be entirely blamed on Pacific Northwest weather, and I also had some deep rooted anxieties from my past.
My husband helped me research a few psychiatrists and we found one who did not administer drug therapy as the first option. I was intrigued. I am often overly sensitive to over-the-counter medication, experiencing a range of allergic reactions like numbness and itching to hallucinations. When we met with this psychiatrist, she spent two hours talking to my husband and I about my past and she made some profound links to my current behaviors that made a lot of sense.
It was like a lightbulb that went off. I felt heard. I felt seen. I walked away from that meeting feeling as though, finally, someone understood what was going on in my head and I was not crazy.
This feeling, of being understood combined with the incredible bed-side manner, was what encouraged me to trust this psychiatrist. I mean, how many doctors spend two-hours with one patient when it's not a surgery?!
After allowing my husband and I to paint a comprehensive picture of my life and current struggles, the psychiatrist explained that my amygdala had been on guard since infancy. The psychiatrist described my amygdala as a big bad bully that was not allowing the rest of my brain to communicate, process, or fire properly, and that TMS would help it calm down by stimulating the dormant areas of the brain and encouraging creation of new neural pathways. The psychiatrist said that, after TMS, I'd get childhood memories back, and my neural pathways would relight or regrow, so I could be a better functioning adult.
I've since learned that neural pathways can take 90 days to build, but at that time I had not fully fact-checked if any areas of my brain (amygdala included) were not properly firing, lighting up, or communicating. With my current knowledge, this can be measured with a positron emission tomography (PET) scan, which shows how the organs and tissues are working.
In my case, I was only given a new patient intake form which addressed the usual background questions - address, phone number, emergency contact - a GAD-7 (an anxiety form) and a PHQ-9 (a depression form). But from this, the psychiatrist informed me that my amygdala was, allegedly, not functioning properly and the rest of my brain was in some sort of a dormant state. How could all of that be determined from a couple of subjective paper forms? It doesn't make sense (this conclusion eluded me until after my first three sessions with TMS, as I was completely sucked into this magical therapy option). I waited until the psychiatrist's office confirmed that insurance accepted their TMS request, and I scheduled my TMS mapping appointment.
Now, it should be noted that I was running A LOT leading up to my first TMS session. I was training for a marathon, so I had multiple long runs every weekend and I was putting in around 50+ miles a week. I was also walking our dogs 3-5 miles a day, practicing yoga, taking a class in psychology, and working a few side gigs for extra income. Why is this important? It's important because, well, you'll see.
So, here is how my experience with TMS unfolded:
Day 1 (28 June): Mapping appointment day
When I made my appointment for the mapping, I said I wasn't interested in starting the actual treatments until after my marathon and a trip to visit family. This was confirmed via text with the office staff.
I went into my mapping appointment, but was confused to hear that the technician thought that I was also to start my first treatment session that day. My husband and I pushed back because the psychiatrist mentioned that TMS was most successful for 60 sessions straight, and with my running and travel schedule, I would have over three weeks of inconsistent appointments. The tech reassured us that it wouldn't be a big deal, but my husband and I opted to wait for the doctor's opinion when she joined us.
While the tech was adjusting the seat and headrest outside of my view, the doctor finally came into the treatment room for the mapping. My husband and I asked her about missing treatment days and how would affect the effectiveness of treatment. We explained that I had a marathon in six days and a red-eye flight to the East Coast after that ( a trip to visit family who I hadn't seen in over a year). I wanted to get mapped and then book the first session when I returned home.
The doctor assured me: (1) It's painless. (2) I really, really need it. (3) I should be recovered by marathon time and travels, and (4) a break in treatment sessions (though not first expressed as a positive) would be fine, so long as it wasn't longer than a week, so that the brain could get used to the treatment.
So, I was talked into starting the first session of TMS that day. The plan was: three days of treatment, then four days off for the weekend and marathon, then three more days of treatment, and then my trip.
The technician placed a piece of tape on the center of my forehead that had three paper ribbons that extended from the tape. One ribbon followed down the center of my head, along the corpus callosum. And the other two ribbons went above my ears and around, connecting in the back of my head like a crown. During the mapping, I was adjusted to the chair to get as comfortable as possible. There was a plate that kept the right side of my head from moving and then the coil was placed on the left side of my head, just above the ear. It all fit pretty snug. The doctor positioned my right hand in a a few different ways and before each attempt at locating my motor cortex, she had me open, wiggle, and relax my fingers.
The goal of the mapping is to locate the motor cortex, and then position the device 5 centimeters forward for targeted treatment. The doctor mentioned that it was best to find the location where the thumb moved and move forward from there. As a patient, I was not aware of when my fingers moved; I could not feel or see them move. In an attempt to locate involuntary thumb movement, the technician and my husband were watching my right hand like a hawk.
The stimulation that occurred during the mapping felt like an extremely concentrated vibration pulse. It wasn't comfortable, but it was not overly painful. The psychiatrist and technician were not able to find movement in my thumb. The closest finger that had movement was my ring finger. After stimulating the motor cortex twice in each direction, the doctor decided to move 5 centimeters from where they found movement in my ring finger. This would be the location of TMS for me.
As a result of the stimulation during the mapping, I thought that the treatment would feel as described: "a hair pull, a rubber band snap, or a peck from a bird". As convinced earlier in the mapping session, my husband and I confirmed that we would be comfortable with beginning treatment after mapping.
The first round of treatment began and it felt like Thor was pounding an ice pick into my brain. My eyes instantly watered. It did not feel like a "hair pull or rubber band snap." I was in lots of pain. I was almost too shocked to process. Sitting in the seat, the machine is loud and I did not have any hearing protection. The electromagnetic shocks were being chimed by the machine, so I knew when to expect the next series.
The doctor asked me for a pain scale 1-10, and I said, "I have an extremely high pain tolerance, but if I'm going with 10 being hospital near-death, I'd go with a 7 or 8." Even after being told of the intense pain, the doctor continued the treatment for the remained of the 19 minutes. The psychiatrist assured me that it was an extremely low shock that it would get better with time, and that my break in sessions would be a good thing because it would give me time to heal. Halfway through the first session, the psychiatrist repositioned the device due to me moving or the sheer terror in my eyes. The psychiatrist appeared flabbergasted at my pain level, but continued anyways.
I was told that it started at a very low rate - 50% of my mapping response - and the goal was to get to 120% as quickly as possible for the majority of the treatments, but mine would go slower, at first, based on my sensitivity.
We finished the first session, confirmed schedules, exited the office, and I instantly burst into tears. My headache wasn't quite as severe as the pain of the treatment's electromagnetic shock, but hurt nonetheless. Once home, I sat in bed and stared at the wall for 3 hours before my husband tried to put food at my lap. I wasn't hungry. I felt disassociation. I was sad. I cried at everything. Even hours after the TMS session, I could still feel the wrath of Thor's hammer.
Day 2 (29th June): Second round of TMS
My husband and I decided to go back for session two, but not without first explaining the severe reaction to session one. We felt confident that if we did not feel comforted by the staff and the doctor's response, we would stop treatment immediately.
At this point in time I felt stuck between a rock and a hard place, I did not want to experience the same amount of pain as day one, but I also did not want to stop treatment and miss out on something which could heal me. I believed the doctor when she said the pain would subside during treatment and the headaches would dissipate within hours of each session. I did not want to give up.
When we walked into the office, we told the three girls at the front desk all that had happened the day prior. The secretary and the techs looked at me as though I was speaking gibberish. The secretary consulted a more experienced tech, who took over my appointment and assured me that it would get better, and for now, her job was about trying to reduce the pain as best as possible. She thought the tears after the first treatment may be due to being over-stimulated, but should clear up over time.
I believed her.
She reduced the percentage of intensity to 45, and she said that this was the lowest the machine could do. She also adjusted the coil angle from a 0 degree to a 1 degree change to see if it made any difference in the pain level.
The machine chimed on and signaled the usual chime that the shocks were about to start. I braced for impact and held my breath. The pulses went from Thor's-hammer-slamming-an-ice-pick painful to worst-charley-horse-ever painful...so, not much.
With the noted slight reduction in pain, the more experienced tech said she would put herself on my treatment days going forward to avoid the younger techs handling me. She mentioned that some people have had different experiences with different techs even though the machine and coil is set up the same every time. During the 3,000 electromagnetic shocks, she also called the psychiatrist, and told my husband and me that the psychiatrist would be in the next day to discuss my "sensitivity" to TMS.
I walked out the second day feeling a little dizzy, disassociated, and spacey, but I pushed those feelings aside. I felt reassured knowing that the experienced tech and doctor were going to be in the office on day three. I was still in a lot of pain, but I felt heard. I felt like I had finally found a care team who had my back.
Once home, I told my husband that I felt like a piece of my brain was missing. I felt like a lobotomy patient (no, I've never had a lobotomy, but that's the best word to explain how it felt). I sat in bed, held my face, and drooled. But despite these adverse effects, I figured if I could get through this, the reward at the end would be more than worth it.
Day 3 (30th June): Third and final TMS treatment
In hopes that our issues were finally heard and handled the day prior, we went back for treatment three. The experienced tech was nowhere to be found and nor was the doctor. My husband and I looked at each other trying to read the other's mind and waiting for the other to ask the techs the location of the doctor and the more experienced tech, but we did not. We stood dumbfounded in the waiting room.
One of the younger techs gave me a cap to wear. It was a silky cap that fit snug over my hair. I was told by the doctor during the first treatment that the cap was for actual scalp pain or scalp burning from the electromagnetic pulse. I wore it, but from what I could tell, it did nothing.
This tech this time was the same one that was paired with the doctor on day one. He was mute and uninterested. He tapped on the computer, barely looked in my direction, and other than asking the typical alcohol and caffeine questions, he didn't speak.
The pulses hurt worse than the day prior. It felt like Thor's hammer was back for revenge.
When I got home, I had all the similar symptoms as before - dizziness, disassociation, sadness, headaches, etc - plus a new side effect: motor coordination issues. For example, I reached for a coffee mug and instead of grabbing it, I knocked it off the table and it shattered. This, of course, led me to tears.
This was just the beginning of my experience with TMS. Please keep a look out for more updates on my blog as I plan to continue to share my TMS journey and healing from adverse effects of this "treatment".
If you crave more information, please check out James Hall's information. He has been recovering for five years and has created a Facebook advocacy group, a podcast, YouTube channel, and several well-researched articles about how TMS can harm you, the marketing ploys of TMS, and more. I wish I found his articles before treatment, but the TMS-utopia is a real thing and it's scary. I'm hoping that my blog finds you before you seek treatment.
Victims of TMS Actions Group: https://tms-sideeffects.com
Unshadowed Thought - YouTube podcast recording
All my light. All my love.
Jordan
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