O.C. Manic-Depressives Find Support in Quest for Control

As they settled around the conference table, one woman confided to her neighbor: “I’m taking five pills now.”

“Are you trembling?” someone else asked no one in particular.

And then, from across the room: “How were those shock treatments?”

Welcome to the weekly meeting of the Depressive and Manic-Depressives Assn. (DMDA) support group, where The Rollercoaster Times is the name of the newsletter and the conversation swings from fast-paced tales of adventure to hopeless, fearful queries about the future.

Manic-depression, or affective bipolar disorder, is a psychiatric illness that plagues about 1% of the nation’s population with severe, uncontrollable mood swings. Untreated, patients alternate between periods of dark, energy-deprived suicidal sadness and hyperactive euphoria marked by uncontrollable behavior and images of grandiosity. On medication, they lead more normal lives but are still vulnerable to intense ups and downs.

The disease made national news this month when Mark Richard Hilbun, a fired postal worker, was accused of stabbing his mother and family dog to death and then going on a shooting spree that left another dead and four wounded. Manic-depression had been diagnosed in the Orange County man, but he was not taking his prescribed medication.

However, experts on manic-depression emphasize that people who suffer from the illness aren’t prone to violence so long as they control their disease.

Hilbun, according to Dr. Rick Massimino, demonstrated “an illness that’s out of control” during his alleged murderous rampage.

“If you surveyed all the people who had out-of-control hypertension, diabetes, etc., you would find some out-of-control behavior, some crime, some danger to society,” said Massimino, founder and president of the John Henry Foundation for chronic psychiatric illness in Orange. “The issue here is whether the illness is in control. It’s easy for other people to control their illness. The mentally ill are working at it 24 hours a day.”

Part of that quest for control is the Brea support group.

Begun 10 years ago, the Orange County DMDA chapter was the first in California. Now, with about 300 members, the patient-run DMDA sponsors monthly educational speakers along with seven support groups--for manic-depressives and their friends and relatives--that meet weekly around the county.

One by one at the meetings, people volunteer to “share,” starting with the obligatory “My name is . . . and I’m a . . . “ of self-help groups and then meandering into a free-form update of the past few weeks. Most start with a vague answer to “how are you” but soon find themselves exposing intimate fears, thrills and sensitivities.

“I thought the drugs were supposed to make me all better,” began Loretta, a twentysomething woman in a pink T-shirt whose straight blond hair was stuck in a headband.

Loretta received her diagnosis a year ago, after she tried to commit suicide, after her husband left. Things were going well, she said, until last week, when she went to bed “feeling perfectly” fine, but woke up “totally depressed” and landed in the emergency room.

“I wonder who’s in control of my life--me or this bogyman? This past year, I’ve just been holding my breath and waiting,” Loretta said, clearly about to cry familiar tears. “Does anybody ever quit getting the depression? Do the drugs really do anything? Am I ever going to get well? “

There is a pause.

Then, searching for an answer, they respond.

“First, it’s been, for me, learning what my limitations are,” offered David Shankin, 31, explaining that he tries to reduce his stress, works only part time, and sometimes just avoids being with people. “Accepting the limitations is even harder.”

“I’ll probably be on it all my life,” chimed in an older woman whose disorder was diagnosed decades ago. “The medicine really helps.”

Betsy, who seems a support group veteran, pointed out: “All of us gets ups and downs.”

But an hour later, the conversation has come back to the same question.

“I’m wondering whether, you know, I’m going to get better, get normal,” said Shankin, who lives in Yorba Linda and has trouble, sometimes, just going to work. “I want to just yell it out: ‘When will it end?’ ”

Doctors warn that the struggles of most manic-depressives do not end. Like diabetics who depend on insulin, manic-depressives must take medicine twice daily to even out their moods.

The most commonly prescribed drug is lithium, a chemical that costs about $10 for 100 capsules. Some patients take prozac, tegretol or other medication, and many combine lithium with anti-depressants. Every patient requires a different prescription.

Though experts believe manic-depression is a biochemical disease, they have yet to find a clear diagnostic test or to isolate its cause. It appears to be hereditary, but doctors have not located a gene that carries it.

Manic-depression strikes without regard to gender, though about twice as many women suffer unipolar depression as do men. The disease is diagnosed in most people as teen-agers or adults, often after a major depression or suicide attempt. Though doctors believe people are predisposed to manic-depression, stress often induces the first serious episodes.

New research conducted at UC Irvine’s brain imaging center suggests that manic-depressives’ brains function differently.

Dr. Monte Buchsbaum, who led the UCI study of 12 unmedicated manic-depressives, said those patients had a lower level of activity in the parts of their brain that organize and inhibit behavior, control personality, judgment and future planning, and integrate movement with emotion.

Further, Buchsbaum said, the communication loop linking various parts of the brain is different among manic-depressives than those without psychiatric illness.

Diagnosis is often difficult: A salt-and-pepper-haired 60-year-old support group member, who asked that her name not be used, saw 17 doctors before finally figuring out what was wrong.

Many patients seek doctors’ help only for depression, because they enjoy the manic periods and do not realize that the tremendous “up” is part of the illness.

“When I was manic, people loved to be around me; people love the tremendous energy,” said Kristen Bartunek, 25, who lives in La Palma and counsels manic-depressives at a psychiatric hospital in Bellflower. “I thought that was my neat personality; I thought that was the new me. I was confident, self-assured. I was bold.”

Bartunek laughed as she recalled the support group’s jealousy of a woman who suffered from unipolar mania--all highs, no lows.

But mania leaves people sleepless, unable to concentrate enough to read. Thoughts race, and fantasies of prowess are common. Many patients suffer delusions that they are grand historical figures; others spend vast amounts of money or engage in promiscuous sex, decisions they later regret.

For Melissa Harrelson, 21, mania means an acute desire to leave the state. One afternoon, she jumped in her car and took off for New York. On the way back, the car broke down.

“It’s really an odd feeling because you’re not in control of yourself. I want to do 20 things in one day and I’m positive I can do it,” Harrelson said. “At the time, things sound really good. . . . Afterward, I always feel really bad about what I’ve done.”

At the support group, a middle-age man named Alex “shared” his mania.

Sometimes on the freeway he has a sudden urge to drive fast. Really fast. Sometimes, sitting alone in his living room, he wants to have a conversation. And thinking--he’s always thinking. About the future. What things will be like 20, 200, 2,000 years from now. About the Bible--whether it’s true.

“Sometimes, I don’t feel well,” he admitted. “Sometimes I have the feeling that I might be crazy.”

Nervous laughter, then full-blown laughter, rippled through the room when Alex mentioned conversations with people who are not there. Perfectly sane people talk to themselves all the time, the group consoled him. Someone’s husband is a chatterbox in the dressing room; someone else’s mother has daily conversations with the cat and dog.

The thrill of mania, the boundless energy, is what leads patients--perhaps what led Hilbun--to abandon medication, doctors said.

“If you’ve lived with euphoria for a long time, you find it hard to accept neutrality,” Massimino said. “It’s the same reason people dying of lung cancer smoke in the hospital.”

But the mania inevitably gives way to the depression. And the depression--energy-sapping, mind-blowing, overwhelming depression--lasts longer.

While depressed, patients find themselves literally unable to get out of bed. Uninterested in food, uninterested in people, they skip school or work and just sleep. As the days drag, thoughts of suicide become attractive.

Harrelson, a rapid cycler who can go from high to low overnight, said “the hardest thing is not knowing when the moods are going to change.”

“It’s not like somebody gets upset at you and you get depressed, it just happens,” she explained. “It’s hard to know that you can’t really trust your own thoughts and feelings. What are you except your own thoughts and feelings?”

The intangibility of manic-depression makes it not only harder to diagnose but also harder to live with. Harrelson’s father thinks she will stop suffering if only she embraces God; an old friend insists she will feel better if she eats right.

“I’m tired of everyone telling me to cheer up,” she said at the support group meeting. “I can’t cheer up.”

Val, a Chapman University English major in whom the disorder was recently diagnosed, said people think she is just trying to shirk extra responsibility, using manic-depression as an excuse.

“How did any of you get other people to see that it was real, that you’re not faking it?” Val asked the support group. “I don’t turn blue; smoke doesn’t come out of my ears; there is no sign that I’m doing, being, feeling anything! I say I’m depressed, and they say: ‘What does that look like?’ ”

Around the table, nods abounded. Everyone, it seemed, had been told “it’s all in your head,” had had well-wishers suggest they “snap out of it.”

As the meeting neared a close, Shankin confided that, at times, he is jealous of a deaf co-worker whose disability is better understood. In an interview later, he said he often wishes he suffered from cancer instead of manic-depression.

“No. 1, people accept that, and No. 2, it doesn’t affect your mind,” Shankin said. “When your mind goes, your whole life goes.”