Most people think shocking people in mental hospitals stopped decades ago. It’s alive, well and growing in popularity. Doctors and hospital websites say it is safe and effective, but did you know the FDA never required safety testing? Were you aware that ECT has no standardized operating procedures (SOPs) for the “method of administration?” One of the ECT machine manufacturers published an update to their user manual listing seven administration variables associated with a risk in permanent brain damage. Sadly third-party audits to reduce the risk of permanent brain damage aren’t routinely conducted. The FDA doesn’t track how often shock treatments are used on each patients or under what circumstances. We don’t know how many people are getting it. We don’t know how many treatments each person gets. We don’t know what kind of treatment they’re getting. Without SOPs, not all ECT is the same.
One researcher estimated in 2006 that more than two million people receive shock treatments internationally each year. Since 2006, electroconvulsive therapy began making a come-back. The FDA just approved it for use in kids 13 and older. The only requirement is to not having desired improvement after trying two antidepressants. It’s no longer a treatment of last resort.
Memory Loss and ECT
My doctor first talked shock treatment with my parents when I became catatonic. He did no blood work or brain scan to test what could be causing my catatonia, but I wasn’t responding to treatment. The situation became desperate. When my doctor talked to my family about shock treatments, he minimized the risks of permanent memory loss, reassuring my parents that it was “transient” or temporary. He said that only two percent of people have permanent memory loss. That statistic stuck with me. Two percent. In the months after treatment, it became apparent that I was part of that two percent. The more I spoke with other ECT survivors, I began realizing either more people got ECT than I realized or the statistic my doctors gave me was wrong. Far too many of us live with “dense, pervasive memory loss that extending back from treatment.”
I quit shock treatments in 2009 against medical advice. I was supposed to have my 117th treatment, but could no longer envision my parents, family members or friends faces when talking to them on the phone. I couldn’t remember their personalities or shared experiences. It left me feeling disconnected. Relationships are built upon shared memories. That disconnect was more terrifying than the “treatment resistant” symptoms ECT was supposed to fix. It didn’t fix anything.
Instead, I no longer remembered childhood, adolescence or young adult life. It didn’t matter that I lived in the same city as my family and saw them several times a week. I couldn’t imagine their faces or remember what they were like. Nice people called themselves my parents. I had pictures to prove it. But nothing more than their word, historical records and photos tied me to them.
Two years after ECT, and with a lot of self-imposed rehabilitation, I began regaining the ability to create new memories. It’s like I began to exist as a 36 year old. I have 38 journal volumes in my own handwriting which do not trigger memories. Photo albums of my life have the same effect. Flipping through them is essentially a game of “Where’s Waldo.” I scan photos searching faces for my own to see if I was there.
What are the risks associated with ECT?
Informed consent paperwork that I signed stated the most worrisome risks associated with shock treatments were a headache and “transient memory loss.” They are wrong. The migraine immediately after treatment is hardly bearable, but that was the least of my problems. I live with electrical injury.
I’m not alone. Many have similar problems after treatment: memory loss, concentration problems, balance issues, coordination problems, dizziness, headaches, reading difficulties, visual-spatial difficulties, planning, carrying out plans, confusion, inability to remember work or employment experience and difficulty or inability to create new memories.
Where can injured patients get help after ECT?
What’s worse? We have no where to go to get help. There is no official brain injury rehabilitation program for people with injuries relating to repetitive electrical shock to the head. In fact, this type of injury is “outside the scope of practice” for most neurologists. Many ECT survivors injured by treatment try (without success) to get testing or brain scans in an attempt to prove to others how bad things are. Doctors rely on the Mini Mental Status Exam (MMSE) to test for brain injury among in ECT patients. The MMSE doesn’t measure injury to the frontal obes. In fact, some lobotomized patients pass it. Complicating matters, standard MRI or CT scans cannot detect the type of problems caused by thermal electrical injuries. Injuries documented in neuropathology research are difficult to measure in living people. I will share more about how to measure brain injury in people with a history of ECT in another post.