Seizures, source of hope and fears!

Lorelei McKay awoke with a nervous feeling. The pain came when she coughed.
She could feel where the surgeon had drilled four holes in her head just hours earlier. Neurosurgeon Istvan Takacs had put pea pod-shaped electrodes on the surface of her naked brain.

Gray electrical cords snaked from the white bandages on her head, down the side of the bed, across the floor and up to the video-EEG machine that would capture the activities of her brain and body when she had a seizure. Rows and rows of waves rippled across the machine’s computer screen, each representing electrical activity in a different part of Lorelei’s brain.

Someone had to be in the room with her at all times to call a nurse and hit a button to mark the EEG chart when the seizures came.

Lorelei was ready for them, and she wanted them to come strong and plentiful. Funny, because she had been trying to get rid of those same seizures for the past year and a half. But having seizures now was her best chance to eliminate them forever.

Epilepsy had struck her suddenly in 2004 over the July 4 weekend, changing her from an outgoing entrepreneur to a dependent shut-in.

Her situation seemed hopeless, until she was referred to Dr. Jonathan Halford, a neurologist at the Medical University of South Carolina.

There was a surgery — called lobectomy — that could eliminate her seizures, he told her. These holes in her head were a last step to pinpoint the part of her brain that was damaged. Then surgeons could remove it.

But first, she had to have seizures. She settled in and waited for them to start.
Three days came and went.

No seizures.

She had stopped taking her anti-epilepsy medications, but it seemed that wasn’t enough. Her brain needed a little coaxing.

Sleep deprivation had led to seizures in the past, so her doctor asked her to try to stay awake for extended periods. She hardly slept for several days until Dr. Halford warned her that lack of sleep could make her psychotic.

Anyway, it wasn’t working. They had to try something else.

Technician Maryhelen Britt brought in a pedal and a strobe light attached to a rolling stand. Lorelei pumped the pedal for a few minutes, then Britt flashed the strobe lights in her face for three minutes. Lorelei’s eyes burned as she tried to stare at the lights. Britt told her she could close her eyes; it’s the brain, not the eyes, that the lights were meant to stimulate.

Next came hyperventilation exercises. For three minutes, Lorelei breathed rapidly with her mouth open.

“How are you feeling, Lorelei?” Britt asked at the end of the routine.
“Tingly,” came the answer. “My skin is crawling on my neck.”

Still, no seizures.

Only pain.

Lorelei had a splitting headache, and her jaw ached where the surgeon had cut through the temporalis muscle.

After falling asleep one evening, Lorelei awoke with a start, her heart pounding and her mind confused.

A seizure!

Her husband, Rob, pressed “the button” and called a nurse.
The nurse found no seizure activity on the EEG. False alarm.

WAITING ...

While Lorelei waited for real seizures, a doctor had to re-stitch her scalp. Cerebrospinal fluid had seeped from her head, staining her bandage and pillow yellow. When she sat up so the doctor could better see where to stitch, some of the wetness from her scalp spilled onto her shirt.
“I started laughing, but I wanted to cry,” she said.

But crying would just make her head hurt more, and all she really wanted to do was have a seizure.
The pain in her jaw eased, so Lorelei could pick at some stewed beef, rice, vegetables, banana pudding and apple juice from her hospital lunch tray. She thought about how much her time in Charleston was seeming less and less like a hospital stay.

“For me it’s like a vacation — people serving me hand and foot,” she joked. “Other than this head problem, it’s an improvement over being at home all day. It’s great.”

She passed the time by chatting up attendants and nurses —some even came to visit because they remembered her from her hospital visit the previous year.

As time dragged on, however, her life of leisure began to frustrate her. On the fifth day of her stay, Lorelei swapped her hospital gown for a navy blue-and-white calico shirt, tan sweat pants, and black-and-gray Joe Boxer socks. Putting on more clothes wasn’t something Lorelei always had done willingly — as a child, she would shed her clothes and streak through the house and yard to the amusement of her family and neighbors.

Under the hospital lighting, she dabbed on face powder and pink lipstick from a cosmetics bag she kept nearby. She brushed the stringy red strands of unwashed hair that peeked out from the bottom of her bandage, and curled them with a hot iron.

“It just feels like such a pathetic attempt at looking human,” she said. “This might seem silly, but you feel better when you do something.”

She fussed around, tidying the room so much that her surgeon jokingly suggested she might look into choosing new wallpaper. She tried to do crossword puzzles but couldn’t get past the first clue. She didn’t get far with the books she’d brought, either — a religion-history book, old issues of Country Living magazine from her mother and a little New Testament and Psalms. Finally, she decided to while the hours away by counting the blips running across the computer screen.

At one point, the EEG trace disappeared from the screen. The computer had run out of memory. A nurse got it going again, after much tinkering and the aid of a technician on the other end of the phone line.

“You’re the one who’s supposed to be having the seizure, not the computer,” said Rob, who was on that shift of Lorelei’s seizure watch.

Rob did word search puzzles; read “Spurs and Feathers,” a magazine about sports at his alma mater, USC; and watched ESPN’s SportsCenter on a loop.

“I’m actually just brain dead,” he said. The waiting was driving him crazy, too.

“Have a seizure,” Rob said to Lorelei.

“It’s bad to be wishing seizures on her,” he said, “but that’s why we’re here.”

The sooner she had a seizure, the sooner they could stop racking up hospital bills, and Rob could stop losing money by staying away from his commission-paid job.

Luckily, the couple had good insurance coverage.

Lorelei’s mother, Rob’s parents and other family members had taken turns driving from Columbia to relieve Rob.

“It’s a big fiasco,” Lorelei said. “Everybody’s having to go through all that just to sit with me.”

Why wasn’t she having seizures? She tried to diagnose the problem. Was she eating less than she usually did at home? Was she too relaxed? Her thoughts, questions and doubts overwhelmed her. She crumpled in tears.

Even though she hadn’t had seizures yet, the doctors were learning something from her EEG. The abnormalities on the chart — sharp spikes that lasted for just fractions of a second throughout the day, and the same types that occurred repeatedly during a seizure — were showing up in the frontal lobe of her brain.

If she had frontal-lobe epilepsy, she still could have a lobectomy — but not at MUSC, which offers only temporal lobectomies. She would have to go to Duke Medical Center in North Carolina. Or she could have a pacemaker-type implant — a vagus nerve stimulator — that could sense and disrupt an oncoming seizure.

Lorelei’s 28th birthday rolled around 11 days after she entered the hospital. Her parents gave her a sewing machine.

What she really wanted was seizures.

Instead, a week after her birthday — almost three weeks after she had entered the hospital — doctors told her they would remove the electrodes from her brain.

Her heart sank.

She would not be cured.

What would people think about all the time she had spent in the hospital?

There would be questions.

And comments.

And jokes.

And whispers.

People had asked why she was so intent on having surgery. Why not wait the seizures out? Some thought she was wasting money by traveling to Charleston. Some thought she was faking the whole epilepsy thing. It all got to her, and sometimes she wondered whether she really had seizures.

MYSTERY

Why had they stopped as unceremoniously as they’d started?

She didn’t know.

The doctors didn’t know.

“It made me second-guess whether she had epilepsy in the first case,” neurologist Halford said. “I really do believe she had epilepsy... . I just don’t know what to say about it.”

Other doctors weren’t sure what to say, either.

“The functioning of the brain remains one of the greatest mysteries in science,” said Adam Mamelak, a neurosurgeon at Cedars-Sinai Medical Center in Los Angeles who specializes in epilepsy surgery. “The fact that the brain works at all. The fact that we aren’t all having a hundred seizures a day, and on top of that the capacity of being creative; the fact that we have conscious and unconscious behavior.”

Considering that the brain is a massive integrated computer made up hundreds of billions of cells each connected to thousands of others, “it’s not terribly surprising that we don’t understand these basic things,” said David Eagleman, a theoretical neuroscientist and assistant professor at the University of Texas Medical Center at Houston.“A single cell in the brain is about as complicated as a city is.”

Until the basic mysteries of the normal brain are unraveled, it’s difficult to even begin to try to understand disorders such as epilepsy, said Eagleman, author of “Ten Unsolved Questions in Neuroscience,” to be published later this year by MIT Press.

Current research into understanding epilepsy includes trying to figure out what genes are involved in genetic epilepsies, and by what mechanisms. Researchers are trying to develop ways to better pinpoint where in the brain seizures arise; others are trying to develop drugs that disrupt pathways involved in epilepsy. Still others test those drugs clinically.

LORELEI’S LIFE NOW

Lorelei left the hospital Nov. 2, 2005, with as many questions as she’d taken with her. And disappointment had forced hope out of her heart.

The bright side was that she was taking a very small dose of medicine, and still her seizures had not come back.

Maybe she had been cured without the surgery.

A miracle?

Surely this couldn’t last.

She was stuck at home with her uncertainty. She didn’t know when the next big seizure would hit her.

A month after leaving the hospital, she stopped going outdoors with the cats and started sleeping longer than usual.

She felt like a huge burden to Rob.

She wondered how many painkillers she would have to take to fall asleep and not wake up.
Her stress was Rob’s stress.

“You’re trying to console your wife every day ... not just because something happened,” he said. “How do I deal with this situation, plus depression?”

Lorelei went back to see Dr. Halford three days before Christmas and got a prescription for the antidepressant Cymbalta and the sleep aid Ambien. The doctor also increased the prescribed dosage of her anti-seizure medication by half a tablet. She declined his offer of a visit with a psychiatrist.

The antidepressant soon helped her to feel better.

But within the next few months, she started waking up at night with her heart racing, teeth clenched, body jerking, difficulty breathing, dizziness, hyperventilation and headache.

The episodes were similar to the ones she had before the first big one hit her in mid-2004. In the daytime, she would stare into space, feel tingling or shaking in her face, or start stuttering uncontrollably. But at least she wasn’t losing consciousness during the day.

Dr. Halford increased her medicine dosage again, and that reduced the symptoms.
But they didn’t go away.

While waiting to see what would become of her, Lorelei carried on with her life.

“I’ve been a lot more active, more productive, working on a lot of little projects,” she said.

She sewed a bathroom curtain for her father’s birthday, and a pink-and-green quilt and Care Bear pillows for her nieces. She started going to auctions and estate sales as she had before the seizures.

But Lorelei, a former bookkeeper, was having trouble cataloguing her inventory using a basic computer spreadsheet.

Rob would tell her, for example, how many items came in a package, then ask her to subtract the number of missing items to find out how many they had in hand. She could hear him, but she just couldn’t do the math. Even if he repeated it.

“I just want to cry, because it doesn’t make any more sense to you than the first time, even if they repeat it or say it louder,” she said. “I’m hearing numbers, but they’re not making sense.”

Lorelei froze in the supermarket while trying to write checks. She got stuck in conversation with store clerks. At her yard sale, Lorelei asked a woman to figure out her own change, and the woman stung her with, “You must be a product of the public school system.”

Incidents like those left her embarrassed and frustrated.

And tired.

At seven months after leaving the hospital, the little seizures weren’t going away.
And they were eerily similar to the ones she’d had just before the first big one struck.