Odd 'spells' and 'fits'

Menzies first began to experience seizures began when she was about 8 years old. According to her family, who referred to these seizures as "spells" or "fits," Menzies "made odd noises and picked at her clothes" during these episodes, which typically lasted a few minutes. 

 "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."

After Menzies' seizures became more frequent, her mother took her to a doctor, where she was diagnosed with epilepsy, a neurological disorder known for causing "recurring unprovoked seizures," Boodman writes.

Because doctors failed to explain Menzies' epilepsy diagnosis to her and because of the stigma surrounding epilepsy, she often felt self-conscious and guilty for having seizures, especially as she experienced involuntary laughing episodes that "made her the butt of jokes at school," Boodman writes.

As Menzies went on to attend secretary school, her seizures flared up again. Years later, she learned that her laughing episodes were gelastic seizures, a rare type.

After experiencing issues memorizing important information from her classes and fearing that she would fail out of college, Menzies said she became "exhausted, panic-stricken and scared to death," and took an overdose of her epilepsy medication.

After subsequently falling out with her family and moving to Portland, Menzies got a job at a law firm and began seeing a therapist and neurologist, who switched her medication, though it was only partly effective.

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

A 'shocking and vindicating' 68-day hospitalization

For about 12 years, Menzies, who had then moved to Northern California and started a family, said she experienced no mental health problems. Her seizures, however, were a different story.

By then, she'd developed atonic seizures, otherwise known as drop attacks, which resulted in losses of muscle control and falls, as well as tonic-clonic seizures, which result in debilitating "convulsions and a loss of consciousness," Boodman writes.

After Menzies' gelastic seizures began occurring multiple times a day, she became increasingly suicidally depressed and was hospitalized for a second time. After weeks of treatment, Menzies' depression abated, and she was able to go back to work.

After nearly two weeks in the hospital, Menzies spoke to a neurologist, an encounter she has no recollection of. The neurologist came to suspect that the source of Menzies' depressive periods, memory issues, and seizures lied in a tumor-like growth "buried deep in her brain," known as hypothalamic hamartoma (HH).

HH occurs once in every 100,000 to 200,000 births in the hypothalamus, which is located in the back of the brain and regulates functions such as mood, memory, and hormone release.

HH also causes gelastic seizures, drop attacks, memory problems, cognitive difficulties, and depression, as well as an early puberty. Menzies' symptoms fit the bill.

After an MRI confirmed the presence of a pencil eraser-sized HH, Menzies recalled feeling relieved and eager to undergo brain surgery for the tumor. In early 2019, Menzies underwent a laser thermal ablation, "a minimally invasive procedure that uses heat from a laser to obliterate the tumor," which was performed by neurosurgeon Edward Chang.

After spending one night in the hospital, Menzies discovered that she no longer suffered from the seizures that plagued her for years and haven't returned to this day. Whie she experienced memory loss and electrolyte deficiencies within the first six months post-procedure, she soon saw an improvement there and in her depressive episodes.

As Menzies "continues to grapple with the legacy of an illness that left permanent emotional scars," she hopes her story helps others whose HH cases may go unnoticed, Boodman writes.

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