Medical Mystery | Her depression and poor memory had an unusual cause

In the throes of one of the worst crises of her life, Deborah Menzies remembers wondering if she was going to find a place to park her car.

Menzies, then 55, took great pride in her years as a legal secretary, a career punctuated by occasional bouts of severe depression. In August 2018, a problem at the Northern California law firm where she worked “caused me to go off the deep end,” she said.

Menzies told her family she was going to work but instead drove an hour south to San Francisco’s Golden Gate Bridge. She intended to jump and end her life.

She managed to park and was counting backward from 10 when her plan was foiled by a bridge patrol officer.

Menzies was taken to Zuckerberg San Francisco General Hospital where psychiatrists plumbed her medical history, which was marked by seizures that began in elementary school.

A few weeks into her lengthy stay at the public hospital, doctors unmasked the underlying cause of the illness that had plagued Menzies for more than 45 years. That discovery led to successful treatment that eradicated what had been a lifelong source of shame and heartache.

“At least I got the treatment I needed,” said Menzies, now 61. “That’s what matters.”

The episodes her family called “spells” or “fits” started when Menzies was about 8. The youngest of six children raised in a mill town outside Portland, Maine, Menzies said she was told that during the spells, which lasted at most a few minutes, she made odd noises and picked at her clothes.

“I don’t remember anything except that I had these really weird feelings and couldn’t talk,” Menzies said. “It was like I was in a fog.” There was one constant: Each attack was preceded by a zapping sensation in her head known as an aura. Menzies would then smile or laugh briefly for no reason.

When the behavior escalated in frequency and became impossible to ignore, her mother took her to a doctor who diagnosed epilepsy, a neurological disorder that causes recurring unprovoked seizures, which result from excess electrical activity in the brain.

He prescribed Dilantin, a common epilepsy drug, which caused gum disease. When it failed to control her seizures he kept increasing the dose, which didn’t help.

Epilepsy has long been stigmatized; for centuries it was seen as a sign of demonic possession or a curse that afflicted a family. Doctors didn’t explain the disease to her and Menzies’s family made it clear it wasn’t to be discussed at home.

“My parents did not appreciate having to deal with this kind of thing,” she said. “It made me self-conscious. I felt guilty for having seizures.” She was acutely embarrassed by the involuntary outbursts of inappropriate laughter that made her the butt of jokes at school.

When she got older, she recalled, “I’d go to the library and read about it.”

As a teenager she saw a neurologist in Portland. He prescribed a second drug that initially proved to be effective, but grew less so after several years.

Menzies said her first year in secretarial college went well, but the second year was a disaster as her seizures flared. Years later would she learn that the involuntary laughing episodes were gelastic seizures, a rare type.

“Classes were very hard, and I couldn’t memorize anything,” she said. She redoubled her efforts but found that studying harder was pointless because she couldn’t retain what she had just read. “I was exhausted, panic-stricken, and scared to death of the possibility that I would be the first kid in my family to flunk out of college,” she recalled.

Seeing no way out, Menzies, then 19, took an overdose of epilepsy medication. She was hospitalized for a week, dropped out of school and returned home to a glacial reception. Her parents were enraged by her attempted suicide.

“I still remember the look in her eyes,” Menzies said of her mother. “She told me, ‘This is it. I cannot believe you did this. I am done with you.’” Her father, she said, “didn’t talk.”

Menzies moved out, got a job at a Portland law firm, and later began seeing a therapist, which she said proved “invaluable.” She consulted a new neurologist who switched her epilepsy medication, but the new regimen was only partly effective.

“I got really good at knowing if I was going to have a seizure and be unable to talk or begin to laugh,” she said. “I would pretend to yawn or make sure people didn’t see my face.”

In 1990, she moved to Northern California to marry a man she had met several years earlier. For about a dozen years, Menzies, who gave birth to a son, said she experienced no mental health problems.

“Everything was great,” she said. “Everything but the seizures.”

By then Menzies had developed atonic seizures, also known as drop attacks, characterized by a sudden loss of muscle control that results in a fall. One occurred at work when she suddenly fell forward and broke her glasses. She also developed occasional grand mal or tonic-clonic seizures, one of the most disabling types, which result in convulsions and a loss of consciousness.

In 2002, Menzies, her husband John, and son moved back to Maine, which Menzies said she missed. But by 2008 the gelastic seizures, which were occurring multiple times a day, were unabated and causing her great distress. She became suicidally depressed and was hospitalized for a second time.

Studies have repeatedly found that the prevalence of psychiatric problems, particularly depression and anxiety, among people with epilepsy is significantly higher than among the general population. Physiological factors, stigma, and the side effects of antiseizure medications are all believed to play a role.

After weeks of treatment, Menzies’s depression lifted, and she went back to work. In 2013, the couple returned to California to be closer to family.

Five years later, Menzies’s third psychiatric hospitalization was precipitated by a critical email from a lawyer at her firm. Distraught, Menzies said she walked out of the office and drove an hour south to San Francisco’s Ocean Beach where she waded into the surf and planned to drown herself. Unsuccessful, she returned home to discover that her husband had called the police.

Several days later, after assuring her family that she was feeling better, Menzies drove to the Golden Gate Bridge.

At the hospital, Menzies first saw a team of psychiatrists affiliated with the University of California at San Francisco. She said she remembers telling each of them about the aura and the laughing seizures, which she found deeply upsetting.

Because of her epilepsy — Menzies had a documented seizure in the hospital while on medication — psychiatrists asked a neurologist to see her.

About two weeks into her 68-day hospitalization, records show that she saw a neurologist, although Menzies says she has no memory of the encounter.

His strong suspicion, based in large part on her medical history, was that Menzies’s depression, memory problems, and uncontrolled seizures might be the result of a benign growth buried deep in her brain.

Known as a hypothalamic hamartoma (HH), the tumorlike growth is estimated to occur once every 100,000 to 200,000 births. It is found in the hypothalamus, the almond-size structure located at the base of the brain, which regulates an array of functions including mood, memory, and the release of hormones.

Gelastic seizures are a hallmark symptom of HH; drop attacks also occur. Memory problems, cognitive difficulties, and mood disorders, especially depression, are common, as are unprovoked outbursts of rage.

About half of people with HH experience early puberty. Menzies had told the neurologist she had undergone puberty around age 10 and that she had angry outbursts as a child. Her depression, memory lapses, and cognitive difficulties were well documented.

The neurologist recommended that Menzies undergo a specialized scan known as a high field epilepsy brain MRI. The scan, performed the following week, confirmed his hypothesis, revealing a 5 millimeter growth, roughly the size of a pencil eraser.

It was Menzies’s first MRI; in the past she had undergone numerous electroencephalograms, a noninvasive procedure that measures brain waves, and other more common tests for epilepsy, which rarely detect such a tumor.

The result, Menzies recalled, was “shocking and vindicating. I had spent my whole life thinking I was a nutcase.”

After learning the result of the MRI, Menzies said she vividly remembers walking to the wall phone in the middle of the psych unit, calling her husband, and saying, “You are not going to believe this.”

In early October she met with a second UCSF neurologist, Paul Garcia, an epilepsy specialist.

The tumor “might have been seen on an MRI if one had been done earlier,” Garcia said. “But one of the reasons it’s possible to miss it is that it’s not in an area” that usually causes seizures.

From the moment she learned what was wrong, Menzies said she was eager to undergo brain surgery for the tumor. Until relatively recently it had been regarded as inoperable because of its location.

Surgery, often performed in childhood, has become a mainstay treatment. One of the newest approaches, laser thermal ablation, is a minimally invasive procedure that uses heat from a laser to obliterate the tumor. Other procedures include a craniotomy in which part of the skull is removed to access the HH, and gamma knife surgery, which involves targeted beams of intense doses of radiation.

Doctors informed her of possible complications of treatment — stroke, meningitis, memory loss — and told Menzies that her mental health difficulties might not be resolved by surgery and might get worse.

Menzies was unmoved. “I said, ‘Sign me up,’” she remembers telling her doctors.

It wasn’t that simple. The operation was delayed first by her depression, which took weeks to control, and later by her insurance status. At the time Menzies was admitted to the hospital, she was uninsured. Later she was covered through Medi-Cal, California’s Medicaid program.

In early 2019 Garcia and other neurology specialists met to discuss her treatment and recommended laser thermal ablation. The procedure was performed in April by neurosurgeon Edward Chang, who is currently chair of UCSF’s neurosurgery department.

Menzies spent one night in the hospital. She was thrilled to discover that the seizures that had plagued her for decades stopped immediately and have not returned. The first six months after surgery were somewhat rocky, Garcia said. Menzies had problems with her memory and with her body’s electrolyte levels, which help regulate nerve and muscle function; both improved.

The operation, she said, transformed her life. Menzies said it vanquished her depression, although her emotional reactions to certain situations remain heightened. Several years ago, she stopped taking psychiatric medication.

“She’s doing great,” Garcia said. “She’s a very grateful patient and very happy with how things turned out.”

Although belated diagnosis of HH is not uncommon, a nearly 50-year delay is unusual, Garcia noted.

“If a person continues to have seizures that are bothering them, that does deserve a second look,” he said.

Menzies said the HH diagnosis shocked her extended family. Her father lived long enough to learn about it; her mother had died years earlier.

Although detection has dramatically improved — some cases are now diagnosed prenatally — Menzies said she hopes her story helps others whose tumor might have escaped detection. She continues to grapple with the legacy of an illness that left permanent emotional scars.

“It affected [nearly] 50 years of my life,” she said. “I thought if I can help one kid get diagnosed in a timely manner I’ve got to” talk about it.