"ECT Saved My Life But Destroyed My Memory"
A nuanced perspective of a misunderstood treatment for depression and other mood disordersby Rachel Star Withers Patient Advocate
When you hear about electroconvulsive therapy, also known as electric shock therapy or ECT, images of the 1979 drama One Flew Over The Cuckoo’s Nest may come to mind: zombie patients, or bolts of electricity cracking through a lab as Frankenstein's monster howls out and comes to life. In the second season of Netflix’s Stranger Things, ECT is seen as a horrible torture device that leaves a woman catatonic other than repeating the same words over and over. Many people are shocked to find out ECT is still used today. I have had doctors tell me it’s barbaric and others it is life-saving.
A Suicidal Straight-A Student
In 2007 I was a junior in college with a 4.0, working part-time. I was also a schizophrenic with crippling depression and becoming more suicidal every day. My paranoia played on my hallucinations. Every night I lay wide awake with all the lights on. That didn’t stop the hallucinations but was better than being in the dark with them. I soon fell into a haze of depression. I have no idea how I made it to class, how I did any coursework, or how I made all A’s that third year of college.
When Medication Doesn’t Work
At the time I was also seeing a psychologist and psychiatrist every week and had been cycling through every antipsychotic and antidepressant. One might work for a month or two, but then my body seemed to adjust and the dosage was upped until I hit the max and had to switch. My doctor mentioned electroconvulsive therapy. I was horrified at the thought of basically being electrocuted. One year later, I sat in the doctor’s office begging for it.
At the time I was given the option of electroconvulsive therapy or getting a vagus nerve stimulator implanted in my chest, a pacemaker-like device that is programmed to stimulate the vagus nerve in the neck. Insurance made the choice for me.
ECT saved my life. I essentially traded my reading, writing, and memory for a second chance to live. And I would choose the same again and again.
My mom would drive me to the hospital early in the morning while it was still dark. The nurses would put me to sleep and give me muscle relaxers. The doctor would then perform ECT. I would wake up in a haze and my mom would drive me home. I had six treatments over two weeks. After the first treatment, I had a horrible headache, so headache medicine was added to my sleep and muscle relaxer concoction.
Success Rates of ECT
Here is where my story takes a turn. The treatments worked wonders. My mom says within a month I was smiling and laughing again. The deep, pervasive depression lifted. I still had depression, always have, but I was no longer constantly suicidal. My paranoia also lifted making my hallucinations much easier to deal with.
According to brain stimulation experts from the Department of Psychiatry and Behavioral Sciences at Johns Hopkins Medicine, ECT sessions improve depression in 70 to 90 percent of patients, a response rate much higher than that of antidepressant drugs. In fact, according to results published from the NIMH-funded Sequenced Treatment Alternatives to Relieve Depression (STAR*D) Study, only one-third of the participants achieved remission from depression after 12 to 14 weeks on the antidepressant Celexa (citalopram).
Holes in My Memory
While some parts of my brain seemed healed from ECT, other parts were destroyed. I could no longer read, write, or do anything with numbers. And suddenly holes in my memory would pop up. I would attempt to put on a jacket and not be able to figure out how the zipper worked. I would get lost on my college campus, wandering around on the wrong floor, unable to figure out how to read the room numbers. A woman asked for my birthdate for paperwork. I had no idea. I pulled out my license but couldn’t figure out where to find that information or how to begin to say it.
Intellectually I was fine. I was still making all A’s, but had to make adjustments. The disabilities office made accommodations, where I could turn in my papers as audio recordings. My senior year turned into two years because I dropped to the minimum of classes and only came twice a week. I started relearning to write with big markers and bought a bunch of comic books to help with reading. Two years later after my ECT, I graduated summa cum laude with a 3.9 GPA.
A Blank Page
In terms of memory loss, I have lost around 15 years. My brother showed me a picture from his high school graduation. I didn’t even know I went to the graduation. I didn’t recognize myself in the photo. Sometimes random things will come back, but for the most part, it’s like a blank page. I can tell you facts. For example, I went to college, I worked at this place, I traveled somewhere. But I only know this from being told it or my own records.
Everything I wrote above? It comes from video documentation I did. Before the treatments, I spoke with a woman who had regular ECT treatments and she told me to write down everything I would need to remember BEFORE the treatments. I chose to record it.
My memory loss is still ongoing. The only way I know things happened is by seeing photos or video, but I can’t actually remember the event.
Most electroconvulsive treatments result in some memory loss. Two recent studies published in NEJM Journal Watch measured patients’ subjective memory worsening with ECT. In the first study of 1212 patients, 26 percent experienced memory worsening. However, in the second study with 20 patients with treatment-resistant depression, overall cognitive functioning was unchanged after ECT. My brain damage was rare to get. I know others who have had ECT and had no issues with reading and writing. Their memory loss is minimal.
This Is Important: ECT Saved My Life
Why am I telling you about my horror story with ECT if I endorse it? Because I am the worst-case scenario. I am still here because of the electroconvulsive therapy. It saved my life. I essentially traded my reading, writing, and memory for a second chance to live. And I would choose the same again and again. Too often people are afraid to try electroconvulsive therapy and end up committing suicide. Is it a more extreme option than just taking antidepressants alone? Yes. But being so lost in depression that you are actively thinking of suicide takes you to an extreme place.
I still have depression. I’m still a schizophrenic. Currently, I am on three different antidepressants. Last year I started looking into getting electroconvulsive therapy again. My doctor wants me to try more medications first, so I am. But I made a deal with myself — you’re not allowed to hurt yourself till you try ECT again.