I Had 31 Electroconvulsive Treatments (or was it 30?)

Remembered and not Remembered

Photo by Shapiro

I’m sitting in a chair. I’m wearing a pair of sweatpants and a T-shirt. They are both blue; appropriate because, for seven months, I’ve been feeling blue.

That’s not true. It was worse than feeling blue. On the Hamilton Depression Rating Scale, I score severe depression, the highest number. I was trying to reach the stars. My doctor describes the blue atmosphere of my life as a (get ready for a long string of words) endogenous treatment-resistant major depression.

Endogenous means that I have a problem with my brain neurotransmitters that makes me susceptible to depression. I should have been more curious about my grandmother who had a lobotomy.

My depressive episode means that I’ve worked too hard for the past 17 years, and I’ve commuted two hours to work (okay, not every day, twice a week), and I suffered a loss at an early age (my father died when I was six). In addition to environmental factors, I’m predisposed to suffer depression, not unlike someone with heart disease in their family history is more likely to suffer complications of the heart.

I’m in a large room known as the Neuromodulation Unit. The nurse is checking my veins. She likes my left arm. She smiles and says, “Your left arm is just begging for this needle.” The nurse countdowns from five and when she reaches one she pushes the needle into my vein. The IV drip begins. It is through this mode of transportation that the anesthesiologist will give me a combination of propofol and then succinylcholine. The propofol is the anesthetic. The succinycholine is a muscle relaxant. This relaxant makes the induced seizure less traumatic.

Yes, I’m preparing for another electric convulsive treatment formerly known as shock therapy.

How did I end up in this chair in the neuromodulation unit of the Lindner Center of Hope (near Cincinnati)?

Seven months prior, I became non-functioning. I could talk, barely. I could eat small portions. I slept too much. I couldn’t read. It was as if I had signed my life over to the Zombie Apocalypse.

The first line doctors tried different things. The psychiatrist, one of the best in Indiana, tried raising the Cymbalta dose. Then he added an anti-psychotic called Rexulti. I became highly agitated. I could not sit or standstill. I couldn’t look anyone in the eye. So, he tried Trintellix (here are some samples). He pondered adding Lithium. Then he said, “I think I’ve tried everything I know. Your case is beyond me.”

I didn’t have one doctor. I had two. I saw a compassionate and knowledgable psychologist. We talked about my life’s purpose. He asked me to think deeply about the meaning of my life. Who am I? What is the reason I’m here on this earth? Then he said “I think I’ve tried everything I know. Your case is beyond me.”

So, I went beyond. I traveled west to a mental health hospital that possessed years of impressive results and testimonies of praise (like the New England Patriots hoarding Super Bowl trophies).

I stayed in this large western state at this prized institution for five weeks harvesting a fee of $80,000 (insurance does not cover this particular inpatient experience); equity from our home.

I’m charitable saying that my illness was beyond them too. The doctors were waiting for me to reveal a long-held secret (one dark night when I was twenty-two). Or maybe it was that I could not process my feelings. As the team said, “You are a rock star intellectually but a baby emotionally.” It was as if they were begging me to cry; staff invigorating some Freudian breakthrough. If you read their final report you will find that when I’m quoted the phrase “the patient alleges” abundantly occurs. The treatment team demonstrated less trust in me than a turkey trusts a coyote.

I left after five weeks. The medical team wanted me to stay longer, at least two more weeks. The two additional weeks were going to be over Christmas and New Year’s. Gretchen, my wife, and I had had enough. We didn’t have another $20,000 for the additional weeks, particularly when they would be operating under a reduced holiday staff.

Again, they said, “You should stay, you aren’t ready to go.”

I said, “I’m going.”

Weeks later I read the report the primary physician wrote, “The patient had improved sufficiently to be discharged.” They skipped the “alleged” part of the sentence.

I returned home worse than when I left. Gretchen took me to the Lindner Center of Hope located near Cincinnati, Ohio. I spent a week in their adult acute unit. Then I moved to what is called the Sibcy House.

It is here I am diagnosed with (get ready for a long string of words again) Endogenous Treatment-Resistant Major Depression.

Oh, I am also diagnosed with Obsessive-Compulsive Disorder.

Oh, I am also diagnosed with Obsessive-Compulsive Disorder.

Why not add to it Post-Traumatic Disorder; after all the body does keep score.

The medical team recommends that I receive electroconvulsive therapy (ECT).

I say, “Yes.”

I agree because the people at Lindner treat me like a person who is ill, not someone who has created a crime. I agree because they describe the electro-convulsive treatment as the gold standard of addressing treatment-resistant depression. I agree because they say the side effects would be minimal, perhaps some short term memory loss.

The science that supports the use of ECT is fuzzy in the same way that doctors ultimately say they are not sure how anti-depressants work. Yes, many anti-depressants keep neurotransmitters like serotonin lingering longer between synapses. Yet, the actual efficacy may be occurring somewhere else in the brain. The serotonin increase is a result of a healing process unknown to neuroscientists. The serotonin explanation may be a well-intentioned bait and switch.

Many psychiatrists explain how ECT leads to changes in the brain linked with improvements in mood. Specifically, the hippocampus and amygdala increase in size, or at least in the ability to lift mood.

Scientists who study ECT observe significant improvement in about 80% of patients, after say, eight to twelve treatments.

So, 31 times (Gretchen says it was 30) I sit in the neuromodulation unit receiving the intravenous drip of fluid. The nurse pulls the curtain open and asks “Are you ready?” She walks me from this cubicle to the room where the shock is administered. The first time I lay back on the treatment bed I hear a symphony coming from the doctor’s laptop (over time I find that the other doctor who delivers the treatment prefers Led Zeppelin).

The anesthesiologist speaks in a kind voice. She whispers, “You know this goes. I will be very gentle. It will be okay.” She tells me to count down from ten. Her voice sounds like a singer-songwriter from Laurel Canyon in the 1970’s; pleasant, loving, comforting (think Joni Mitchel singing Both Sides now. At seven I feel the propofol. It burns going in. And it provides one, two, maybe three seconds of total relief from the depression. It’s gone. The depression (vanishes for a few seconds as the white fluid soaks my brain.

I’m asleep for, at the most, twenty minutes. Of the twenty minutes, the healing seizure lasts less than one minute.

I wake up. It is as if no time has passed. The same nurse is present. The doctor comes by and gives me a “thumbs up.” I have a slight headache. For the rest of the day, I’m tired. I sleep. The next day I participate fully in the Sibcy Unit activities: art therapy, process group, exercise, individual psychotherapy, and more.

Then, another day of ECT, three times a week.

The first nine times I receive what is known at unilateral treatment; only one side of my brain receives the shock. It is perhaps not as effective but the experience of memory loss is lower.

This gold standard treatment is more like copper to me. I get maybe a little better (though I cannot emphasize enough, again, how humane, intelligent, safe, and friendly this near Cincinnati staff is compared to the highly ranked professionals out West). This Midwest medical facility has a patient-centered culture that, even if healing does not occur, it is a healing place; if that makes any sense.

When the unilateral treatments don’t provide enough relief, the doctor recommends bilateral treatment. The electrodes will go on both sides of my head. The doctor is trying to help.

The first time I receive the bilateral treatment I wake up feeling as if a boxer in his prime had delivered a left hook. I am crying. I’m holding my head. I’m saying “I’m sorry, I’m sorry.” I didn’t know at that time that several episodes of my memory were being canceled.

The treatments continue for five months. I am worn out after each treatment. I sleep most of the days during January, February, March, April, and May of 2019.

Subsequently, I don’t remember anything about — specifically- February, March, and April of 2019.

Psychiatrists who administer ECT note it is likely that a patient will have memory loss, particularly regarding events that happen near the time of the treatment. Such memory loss, a patient is usually told, resolves in a couple of months.

However, a Johns Hopkins document says that 10% may experience a longer term of memory loss.

I am part of the 10%.

At first, when I tell people about my memory loss, the common response is something like, “Don’t worry, your memories will return soon.”

It has been a year and a half. My memories have not returned from their recession to wherever. I have no recollection of the following:

Our youngest son receiving a character award at his high school senior year scholarship convocation,

Taking this same son to college.

Hosting ten friends of his at our house.

Going to dinner with our oldest son at Purdue University.

Going to the theatre with our oldest son at Purdue University.

Move our youngest son out of his first-year college room.

Takuma Sato winning the 2017 Indy 500 (Indy car racing is my favorite sport).

The month of August 2018.

The month of October 2018.

Moving our son to his dorm room for his second year of college.

Going to a half dozen of his percussion concerts.

Going to the theatre to enjoy In the Heights with Gretchen.

Receiving an IPad for Christmas.

Or, remembering anything about Christmas 2018.

Writing a grant proposal to a large philanthropic foundation.

Seeing James Taylor in concert.

There’s more, but you get the idea.

My compassionate and knowledgable psychologist says that now when he is on a medical team recommending ECT, he describes more robustly the risks of memory loss.

I imagine that if I had occasion to describe my memory loss to a staff member at the esteemed Texas institution the response would have been: “Oh, so you allege that you have memory loss.”

After 31 treatments, I call the provider and say that I am going to stop. I leave a message so I don’t know what they think or feel about this.

For some people, the treatment literally saves their life.

I wish it had worked for me.

The memories aren’t coming back.

The depression has lifted some but not because of ECT. The psychologist says it is because I’m a badass. I’ll take that since I’ve spent most of my life trying to be the opposite of a badass.

The ECT did change my hypothalamus in one way.

It is actually more complicated than that.

Listen to Dr. Ray Chan of Texas Health Arlington Memorial Hospital, “Emotion tells your hypothalamus to produce the chemical messenger acetylcholine. Acetylcholine binds to receptors in your brain that send signals to the lachrymal glands — small glands that live beneath the bony rim of your eyes. When these glands are stimulated, they start to produce tears.”

Tears.

The depression didn’t die.

A different mechanism came alive.

Now, I cry several times every day. About anything worth crying about. And, I’ve discovered there are, allegedly, an abundance of experiences; remembered and not remembered, activating a cascade of falling tears.

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Spirituality and Emotional Resilence

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Tim Shapiro

Tim Shapiro

I am an ordained minister exploring the crossroads of religion, spirituality, mental health, and brain science. I can be reached at timshapiro@outlook.com.

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