Friday 5! (Deep Brain TMS)
Let’s talk about Deep Brain TMS (dTMS). I started my dTMS treatments on 5/5/22, and it’s been a life-changing experience. I’m going to run down the most dramatic effects here, so today’s Friday 5 is going to be different. It’s all going to relate to the same subject. I’ll link info on the treatment where appropriate as I write. Some links will take you to pages sponsored by the company that makes the Brainsway machine that’s being used in my treatments and some links will take you to general information I’ve useful.
The average patient does not feel the effects until somewhere between 20 and 30 sessions, but my response was immediate. I felt like someone had reached into my head and flipped a switch. Suddenly I could think clearly. A Twitter friend described the incredible clarity they had the first week, and that describes my experience as well. Everything was and continues to be in high definition. The most important change would take me a couple of hours to notice.
It’s important that you get a run-down of how my drug resistant depression impacted my quality of life, both personally and professionally, before we get into the other details. I’ve never put this down on “paper” before. When this episode started, back in the Fall of 2019, I drove myself to an out-patient facility because I was desperate. They put me on medical leave, and I started partial hospitalization therapy. They put me on an anti-psychotic called Vraylar. I ended up staying on this for almost two years and it was devastating. My wife started doing some digging, and we realized what this medication was doing to me and my team took me off of it. I felt more like myself, but it was all a lie.
I’ve been with my partner for almost 35 years. We met in a bar in college and after a bit of a start and stop, have been inseparable since 1987. She has been my bedrock through this entire fight. My depression was exceedingly difficult for her. It forced her to handle all the day-to-day things needed to keep our family going, all the housework, all the paperwork, all the decisions, everything. She also has had to care for me for the last three years of my illness. She has said that I didn’t make eye contact with her for months at a time during this last episode, and I can only imagine how isolated that left her. My depression impacted every aspect of our lives, including my adult children, who must have also felt like I had cut them off from any emotional connection.
I stopped communicating with all of my friends and, to a lesser extent, my extended family. When we would have family video calls, I’d sit there but would not really be present. I was mute. Before depression, I was the talker in my family. The joker, the crazy one… now I was just crazy. When we would spend time with family, it was the same. I would be there physically, but not present mentally or emotionally. I didn’t talk, joke, laugh, or interact unless prompted. This was driven home to me last summer when I made the rare sarcastic comment and my older brother looked at me and said, “I miss you”. He was not talking about not seeing me as often as he wanted to. He was talking about the fact that I was no longer present in my body. I was a shell animated by a disease I had lost all control of.
I’m a high school social studies teacher. For the past three years, I’ve been on autopilot. COVID has made everyone’s lives hell, and it has impacted teachers in unique ways. I’ve been dealing with that as well as crippling depression. Last Fall I could function at school well. I was better organized and on top of grading in ways I had not been in years, but the cost at home was high. After school, I would go home to sleep for two or three hours, try to eat something, and then go back to bed. Every weekend, I slept. Sunday nights were a mixed hell of anxiety and panic. My presence in my classroom, my “teacher face” was flat and emotionless husk. There was no interaction with my colleagues. I gave them no reason to talk to me or try to engage with me in any meaningful way. I was completely isolated. Some days, I did not talk to another adult from the time I left my wife’s car until she picked me up after school. Oh, I forgot to mention, I’d all but stopped driving. My wife had to do all the driving, including taking me to and from any appointments I had.
I would be remiss if I didn’t discuss what was happening inside my head. Every waking moment, I had intrusive thoughts of self-loathing. My self-hate was reaching the point where I was once again having suicidal ideations. It had been about 15 years since my last actual attempt, but I was gearing up to make another. I had a plan and the only thing that was holding me back was that my wife or children would be the ones who discovered my body and I loved them too much to do that to them. Wow, that’s really hard to write, but it’s where I was. I was going to hang myself in the basement. Ok, that’s even harder to write. Enough details.
Depression lies. It hijacks your thoughts and then turns them against you. Its voice is constantly in your thoughts, whispering self-hate. I could not even look at myself in the mirror. I hated to go out of the house because I did not want to force people to look at me.
Things changed over the winter break of last year. Something just broke inside of me. Seeing my family happy, and trying to pretend I was as well, took too much energy. I crashed. By the time I was back home, I was in rapid decline. I tried to go back to teaching, but it was a disaster; I feel behind in planning and grading. Missed days turned into missed weeks. Something had to change. I changed therapists, and for the first time, I didn’t start this new relationship with the lies I had hidden behind with my previous therapists. I also started telling my long time psychiatrist the truth, that I had been lying to him for years. Depression had me in its grip and I was its puppet.
My new therapist started talking to me about transcranial magnetic stimulation (TMS). In all honesty, my family had been looking into this for a few months, but I was not part of the discussion because I was not myself. My psychiatrist is a specialist in rTMS, which is not as intense as dTMS and when I asked him about it, he agreed with my therapist but thought I would benefit from the more intensive version. He referred me to the only clinic in the area that used dTMS. They use the Brainways system. My wife and my Sister-in-Law did the research, and we decided that this was the way to go. We had a consultation with the doctor who runs the dTMS clinic and he agreed I was a likely candidate. After a few days, my insurance agreed, and I was off to the races. Oh, be sure to check out the Mayo Clinic page on TMS.
Finally, we are ready to talk about what the last week of my life has been like. Have you ever watched those videos of colorblind people trying on those EnChroma® Color Blind Glasses? They are often startled, sometimes to the point of tears. That’s what the past week has been like for me. Everything looks and feels different. After my first two treatments, all of my symptoms were gone. I don’t mean they receded; I mean, they were just no longer there. The voice that had whispered self-hate for years was silent. There were no ideations, I could look in the mirror, I could make eye contact with my wife and children. I could hug them and mean it. I was present in my body and mind and was in control. By 5/6/22, I was driving myself around without a second thought.
The first big test was the weekend. Weekends had been hellish for my wife and me for years. I was moody, slept all the time, and I was demanding in ways that were not appropriate. We hadn’t had a good weekend in recent memory. Last weekend was wonderful. We did things; we spent time together, we talked, we laughed. I had forgotten what the sound of my laughter sounded like, and it was jarring to hear again. I talked and talked, and I had real things to say. Suddenly my voice was mine again. By Sunday morning, I felt the effects slip a bit, and by Sunday night, I was sure that the symptoms were coming back. I went into my third treatment determined to beat this and afterwards I felt wonderful. Each successive treatment has just reinforced the feeling of control. Nobody is using the word “remission” yet, but that’s what this is.
At the time of this writing, I’m about an hour and a half from my seventh treatment and then the next big test, weekend number two. I’m hopeful, so is my family. Yesterday, during my treatment, I had to fight back tears of joy over the way this has changed my life.
This leaves me with so many unanswered questions.
- Why aren’t rTMS and dTMS being used more widely to bring relief to people who live in the hell of depression, OCD, PTSD, and anxiety?
- Why are meds, which do not have nearly the success rate of TMS, the first line of treatment?
- Why are people left on meds for years that are not helping and not offered this option?
- What is the best way for me to use my voice, my Twitter platform, and this blog to help spread awareness?
These questions just scratch the surface. I’ve got my work cut out for me, but I’m going to do it because people need to know that there is hope, even in the darkness.