”Obsessive-compulsive disorder is a superb example of where we`ve been able to go with the new technology that`s being applied to the understanding of mental disorders,” says NIMH`s director, Dr. Lewis L. Judd. ”Knowing that there are many people out there with specific mental conditions for which there are now rational, successful and very effective therapies-certainly for depressive and anxiety disorders and now for obsessive-compulsive disorder-we can offer enormous help to them.”
Several years ago Sydney read a story about an experimental drug for obsessive-compulsive disorder being tested at Yale University`s Neuroscience Research Unit. She enrolled in the study with little hope that she would be helped. But after taking the drug for a couple of weeks, she noticed a significant change. Her mother, as she had often done, was telling Sydney that her restrictive house rules were damaging her children. Normally, such criticism triggered obsessive thoughts about harming her own family, and she would go into a depression.
”She was saying something critical, and I went home,” Sydney recalls.
”I was angry for about a minute or two, and then all of a sudden, it just dropped. I said, `Oh, that`s her problem.` I was no longer obsessed with it. I woke up the next day and felt better. Then, amazingly, the need to clean became less. I was able to not care about cleaning.”
Between the new drugs and behavior-modification therapy, 70 to 80 percent of obsessive-compulsives can be helped, says Rapoport. In behavior modification, patients are exposed to circumstances that would ordinarily trigger compulsive behavior, but they are taught ways to resist the compulsion. For example, the hands of a compulsive ”washer” would be deliberately dirtied and the patient prevented from cleaning them for gradually increasing periods of time.
The brightest hope, however, lies in the new medications that alter brain chemistry. Of these drugs, the most effective so far is clomipramine (trade name Anafranil, by Ciba-Geigy), an antidepressant. On the basis of 15 studies showing that the compound can substantially decrease obsessive-compulsive symptoms in two-thirds of the patients who received it, the U.S. Food and Drug Administration recently rushed through a special dispensation to make the drug available for patients even though it has not yet been formally approved for general use. Despite side effects such as blurred vision, dryness in the mouth, constipation, urinary retention and sexual dysfunction felt by some patients, clomipramine was released on a ”mercy” basis because there is no other drug available to treat this serious disorder and the potential demand for it is great. The only other drug to receive a similar designation is AZT, the compound that prolongs the lives of AIDS patients.
Scientists do not know yet precisely how clomipramine works, but it`s clear that it blocks the loss from the brain of serotonin, an important chemical messenger in the brain. The older inner core of the brain is especially rich in serotonin receptors, and serotonin apparently is needed to override the wrong signals that set loose the obsessive-compulsive urges associated with this part of the brain.
Two other drugs, fluoxetine hydrochloride and fluvoxamine hydrochloride, which, like clomipramine, are antidepressants and act the same way on serotonin, also show early promise and are undergoing clinical trials.
As word about the ”antiobsessional” drugs spreads, Rapoport says she expects to see obsessive-compulsives come out of the closet in unprecedented numbers to seek help. Anticipating that need, Sydney and other sufferers in 1986 formed the Obsessive-Compulsive Disorder Foundation as a support group for patients and their families. The foundation already has more than 4,000 members and has received more than 30,000 inquiries about obsessive-compulsive disorder.
As some scientists work on drugs to tame the overwhelming drives of the disorder, others are looking inside the brain to see what may be going wrong. Using PET (positron emission tomographic) scans to trace the metabolic activity of brain cells as they process thoughts and direct a person`s actions, scientists have identified a characteristic pattern of activity in the brains of obsessive-compulsives.
PET scans of obsessive-compulsives show that their frontal lobes, which are involved with planning and looking ahead, are overworking. The lobes, part of the brain`s newer sections, seem to be caught up in the rituals that normally should be the domain of the primitive parts of the brain-the basal ganglia and the caudate nucleus, deep in its interior.
”Sometimes the connections between the basal ganglia and the frontal lobes do not hook up right, and that causes a `hiccup` or short circuit in the older part of the brain,” explains Rapoport. ”It is the hiccup of the brain that causes the intrusive thoughts and meaningless behavior and makes a person doubt his own senses.
”Some patients will spend two hours going up and down their front steps. They check their door: `Is it locked?` Then they go on to their car and say,
`Wait, is it really locked?` It`s not just that they`re checking. There`s the anxiety, the compulsion to check and always the insight, `Look, I know this is crazy, but . . . .` That`s almost a dead giveaway that they have obsessive-compulsive disorder.”
In a remarkable series of PET scans, Dr. Lewis R. Baxter Jr., a psychiatrist at the University of California at Los Angeles, has shown that in patients whose symptoms subside with drug treatment, the overactivity of their frontal lobes also declines. The drugs appear to restore a more normal balance between these two areas of the brain, Baxter says.
The new evidence showing that drugs can minimize or even stop obsessive-compulsive symptoms and that PET scans can identify an associated chemical brain pattern, indicate to most scientists that the disorder, like most other major mental ailments, is largely biological in nature. Rapoport and other researchers have also found a genetic link. Twenty-five percent of her patients have a direct family member who also suffers from the problem.
”When someone tells you that this is a biochemical disorder and that you have no more control over it than you do about getting diabetes, that`s a very freeing thought,” says Sydney. ”The most important thing to know about obsessive-compulsive disorder is that there is help, that it seems to be a biochemical disorder and that a person who has it is not `crazy.` ”
The discovery of obsessive-compulsive disorder as a widespread though hidden problem came from the first survey ever done, in the mid-1980s, to assess the mental health of a nation. Called the Epidemiologic Catchment Area program, the NIMH-sponsored survey involved in-depth questioning of more than 18,000 adults living in households in five areas-New Haven, Conn.; Baltimore; St. Louis; Los Angeles; and the Piedmont area of North Carolina.
In individual interviews, people were asked a variety of detailed questions designed to uncover symptoms of hidden mental problems. For example, to elicit symptoms of obsession, the subjects were asked if they had any persistent and unpleasant thoughts about harming a loved one, about their hands being dirty or contaminated with germs no matter how often they were washed or about relatives who were away possibly being harmed or killed. Questions about compulsions delved into feelings of having to do something over and over again-handwashing, checking if doors are locked or appliances turned off, having things in proper order-feelings that persisted even when they clearly appeared silly and were resisted.
The results, released last year, showed that slightly more than 19 percent of Americans suffered from some type of major mental-health problem, including alcohol and drug abuse. Almost 9 percent of the population had anxiety disorders, the biggest subgroup, with phobias accounting for 7.7 percent of this group. Obsessive-compulsive disorder affected 1.5 percent of the population, and panic disorders nearly 1 percent. The study also indicated that the average American runs a 1-in-40 chance of developing obsessive-compulsive disorder during his lifetime
The results revealed not only an unexpectedly high incidence of mental-health problems but also how so few of those afflicted were being helped. Of those with diagnosable mental problems, only 17.1 percent had seen a mental-health professional.
Researchers say that most people cope with their problems as best they can on their own and that the disorders are not reported or even discussed in families. Typically the victims are confused, ashamed and embarrassed by what is going on in their minds, and they think that if they tell
people about it, they will be considered crazy or mad.
The study came at a time when two other important changes were taking place. One was improved diagnosis of mental disorders, the other the development of new drugs to effectively control many of these mental conditions.
”We are identifying not only the extent of mental disorders and where they are but the biological underpinnings of these disorders,” says Dr. Darrel A. Regier, director of NIMH`s division of clinical research, which oversaw the study. ”It`s already had a major impact on the nation`s mental health, and it is giving new hope for making it better.”
The survey`s findings led NIMH to launch an unprecedented endeavor called D/ART, for Depression/Awareness, Recognition, Treatment program, to dramatically improve the diagnosis and treatment of depression.
Experts know that they now have in their hands new drugs and psychotherapy that could miraculously end depression in 85 to 90 percent of patients. Yet the survey revealed that only about one-third of people suffering from major depression were getting any kind of help. NIMH is gearing up to go after other neglected mental disorders in the same way.
”This information has put strong pressure on us at the National Institute of Mental Health to begin to generate programs that will reach out to those people,” says NIMH`s Judd. ”We want to get them to recognize their disorders and to let them know that we have effective ways to treat these problems and here`s the way you go about it.”
As surprising as it was to discover that 1 in 40 Americans will at some time in their lives suffer from obsessive-compulsive disorder, the findings probably underestimate the true incidence, says Dr. Marvin Karno, a psychiatrist at the University of California at Los Angeles, who headed the obsession-compulsion part of the national survey. The study found that symptoms of the disorder typically begin in the early 20s, that obsessions and compulsions affect men and women equally and that the disorder is more common among those who are young, divorced, separated and unemployed and more prevalent among whites than blacks.
”Many people with obsessive-compulsive disorder also have phobias and panic attacks,” Karno says. ”People with these disorders in particular have been misunderstood and misdiagnosed, and the majority have never been seen or treated. But once there is adequate public information about how common these disorders are, we`ll see enormous numbers of people coming in for help.”
Fran Sydney, for one, agrees wholeheartedly. ”I look at it like diabetes,” she says. ”If I have to be on medicine my whole life, so what? I didn`t have a life before. I`m enjoying my children for the first time. I missed their whole childhood. I`ve been able to salvage my second marriage. I feel like I was just born, that I`ve just started living.”
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Further information about obsessive-compulsive disorder, support groups and treatment centers may be obtained from the Obsessive-Compulsive Foundation, P.O. Box 9573, New Haven, Conn. 06535.
Psychiatrists interested in obtaining clomipramine for obsessive-compulsive patients who meet certain criteria under an investigational new drug protocol can contact the manufacturer, Ciba-Geigy, at 1-800-842-2422.
