Johns Hopkins Magazine -- September 1999
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A first-person
account of life
lived in terror

H E A L T H    A N D    M E D I C I N E

Prone to Panic
By David Levine '73, MA '75
Illustration by Brad Holland

If I had to choose the defining moment of my life, it would a Sunday morning in May 1972, when I woke up afraid that I was dying. I was 19, and my life has not been the same since.

I was a Hopkins junior, spending the year at University College, which is one of the colleges that comprise the University of London. I had just returned from traveling through France, Italy, and Switzerland over spring break and was about to begin my final trimester of classes. I was looking forward to going to Greece for the summer. I never made it there.

I woke up that Sunday morning and felt an impending sense of doom. The feeling was very powerful, yet I was in no pain, and was not disoriented. At first I thought I was dreaming, but the feeling that I was going to die did not go away. It became stronger and stronger.

I stayed in bed, afraid to move, and called out to my French roommate, François, for help. His first reaction was that I was joking. When he saw I was not--he told me my face was ashen and that I was shaking--he said, "You must have had a nightmare. Come get out of bed, wash your face, and eat something." I followed his directions, because I was unable to make any decisions for myself. We went for a long walk, and gradually, I calmed down. I don't remember anything else about that day, except waiting for it to end. I hoped that a night of sleep would help me and I would wake up feeling normal again.

But just like in the movie Groundhog Day, the next day was the same day. I woke up with that same sense of impending doom. I should add that I was not on any drugs, legal or illegal, nor suffering any illness.

François had to teach on Monday. I had classes to attend. I was afraid to leave the apartment, but more afraid to be alone. So I went to school that morning, where I ran into a friend and told her how I was feeling. She looked at me with great concern and took me to the infirmary. The doctor examined me and, except for my racing heart rate, found nothing wrong.

I told her, "I'm scared I'm going to die," but she assured me that these feelings would go away soon. I went to see her a few days later because I felt no better, and she referred me to the school's psychiatrist. He said I was anxious and prescribed Valium to ease my nerves. He advised returning home to the United States as soon as school was over, ascribing my anxiety to being homesick.

François decided I needed to get out of the city. Driving was good therapy. When I felt anxious, I felt paralyzed. So as long as there was movement, I knew I was alive. But, the beauty of the English countryside was not a lasting tonic. I was always relieved to get back to the city, back home to familiar sights and sounds. This proved to be a pattern of behavior I would repeat for many years. Somehow I always felt safer being in my own house, whether it was my apartment in London, my parents' home in Long Island, or my apartment in Baltimore.

If you can imagine holding your breath for as long as you can, then being asked to hold it in longer, that's how I felt. When class was over, I had to get away and breathe.
When I finally returned home to New York in June, my parents did not know what to do. They were puzzled by my feelings, disturbed by my attacks. Unable to believe that my problem was a mental illness, they sent me to their internist. I hated him. Without taking even a second to talk with me about my feelings, he nonchalantly informed me that sudden changes in behavior were often due to a brain tumor. Hardly a very comforting thought. He referred me to a neurologist, who found nothing wrong, and an endocrinologist, who gave me a glucose tolerance test. Hypoglycemia (low blood sugar) was a popular diagnosis in the 1970s, thought to be a cause of anxiety, but I didn't have it.

My medical file was getting thicker and thicker, but doctors could find nothing wrong. Finally, by mid-summer, my internist said I should see a psychiatrist--a big source of embarrassment for my parents. They warned me against telling my friends, my aunts and uncles--even my own sister.

According to the psychiatrist, taking Valium was a mistake. "By now you know the attacks, as bad as they were, do not kill you, even though you believe they will," he told me. "The more attacks you have, and the more you see that they won't kill you, the faster they will go away." He was dead wrong.

In fact, life got worse without Valium. I had attacks daily, up to five in one day, and even less confidence than before. I would later learn that anxiety attacks are a throwback to our ancestors' "fight or flight" response. But an anxiety attack turns that power inward. Because I was not burning up the energy by running or fighting, it's no wonder that every attack left me exhausted to the core.

By some cruel twist, the attacks often came during those rare moments when I felt relaxed--when I was daydreaming, for instance, or taking a walk. The worst attacks struck at the end of dreamless naps. I woke up completely drenched, disoriented, my heart pounding. During the attack, which would last for minutes, sometimes an hour, I felt detached from myself, as if it was happening to someone else, not me. Objects looked strange, even unreal. I felt no sense of the past or future. I was totally in the moment, except instead of feeling one with the universe, I felt terribly alone and afraid.

Because the attacks were so devastating, I began to live in fear of losing control, of having the next attack. This is not unusual, it turns out. Many people become so paralyzed by this fear that they never leave the house, a condition known as agoraphobia. I have a friend whose mother has not left her home in 20 years.

Since I was living day to day that long, nightmarish summer, I didn't prepare wisely for my senior year at Hopkins. It wasn't until late August that I started make housing arrangements. I belatedly called my two apartment mates from sophomore year, Jack Thayer and David Stevenson, but, not surprisingly, they had already made their own plans. I ended up rooming with two fellow juniors who needed a third person to split the rent.

It became obvious very quickly that the situation wasn't going to work out. Both of my roommates were frightened and puzzled by my behavior. I tended to stay in the apartment most of the time, giving them little time to themselves. I asked for their help when I had attacks. At first they were sympathetic, but after a while they got tired of it. Finally, after one particularly bad attack, they told me they could not cope with it anymore; I would have to move out at the end of the semester. I did not know what to do. I wanted to call my old friends, and beg them to take me in, but was afraid to let them know or see the new me. I felt disappointed, angry, abandoned.

In particular, I missed Jack and David--among the best friends I ever had and probably ever will. We met as freshmen, when we were all living in Baker dormitory. Jack came from a prep school in Rhode Island, but his parents had scrimped to get him in school. David grew up in Lancaster, Pennsylvania. He liked to get into long conversations, usually trying to dominate the floor with his point of view. If I was a little to the left of David, Jack was more conservative, making for a nice balance. We got together each night and took turns getting Cokes and french fries from the snack bar to accompany our discussion on the meaning of life, the Vietnam war, and women.

Our close friendship continued into our sophomore year, when we shared an apartment on St. Paul Street. The tradition of taking turns continued each night at dinner, as one of us would cook a meal, the other had to clean up, and the third got the day off. We stuck to this schedule strictly, whether or not one of us happened to be pissed off at another. Dinner was always at 6 p.m. sharp--the time for Star Trek reruns.

The three of us bonded completely and lastingly, probably because we were going through so many major life events together-- deciding on majors, falling in love for the first time.

Jack felt abandoned when David and I decided to go abroad for our junior year. Even worse, his girlfriend dumped him that fall. He wrote me a letter describing his loneliness, telling how he stared down the quad wondering where his best friends were when he needed them most.

Once I became ill, I understood how he felt. But I held back from telling Jack and David about my illness. Each had found their niche that senior year. They never called me, never invited me over. When we bumped into each other on campus, we talked for just a few minutes. Many years later, Jack told me he could see something was wrong, but since I never said anything, he didn't say anything either.

The Facts About Panic Disorder
Since David Levine's first panic attack in 1972, researchers have made great strides in diagnosing and treating panic disorder, says psychiatrist Rudolf Hoehn-Saric, director of Hopkins's Anxiety Disorders Clinic and co-author with Russell Noyes Jr. of The Anxiety Disorders, Cambridge University Press, 1998.

Prevalence: About 1 to 2 percent of the U.S. population will have panic disorder at some time in their lives. About twice as many women as men are affected. The condition usually begins in young adulthood.

Triggers to Panic Attack: Sometimes precipitated by stress such as overwork, loss of a loved one, surgery, or illness. Cocaine, marijuana, certain prescription medications containing stimulants, or even caffeine can trigger attacks in some people. But attacks can also occur for no apparent reason, says Daniel McLeod, an associate professor of psychiatry at Hopkins. "It can happen out of the blue, when someone wakes up from a sound sleep, is reading a comic book, or watching TV." In some people, relaxation apparently triggers panic.

Diagnosis/Treatment: Patients should first have a thorough medical exam to rule out conditions that can masquerade as panic disorder (such as thyroid problems, certain forms of epilepsy, cardiac arrhythmias). Tricyclic antidepressants and/or psychotherapy have been highly effective treatments. At Hopkins's Anxiety Disorders Clinic, about 60 to 70 percent of patients who are treated with medications are able to taper off and stop their medication without relapsing after a year of treatment, says Hoehn-Saric. About 30 to 40 percent relapse, and a minority of those patients will probably need to remain on medication for life.

Cause: Unclear. Some studies suggest that excess activity in the hippocampus and locus coeruleus--brain regions involved in arousal--are associated. Other research indicates that panic disorder patients have increased activity in a part of the nervous system called the adrenergic system, which regulates heart rate and body temperature. However, scientists don't know whether these differences are the primary sites of a panic attack or secondary changes resulting from an attack.
   Panic disorder appears to run in families, and may affect as many as 40 percent of the members of some families. Scientists are searching for a gene for the disorder.

Source (where not cited) The National Institute of Mental Health.

As angry as I was about being abandoned, a large part of the blame was mine. I was distant, simply too embarrassed to talk to them about the anxiety that gripped me--an embarrassment no doubt instilled in me by my parents. Many times I picked up the phone to call my old friends, but I hung up. Since the best experts in the world were baffled by my illness, what was I going to say? It took me 25 years to tell Jack my story. I never got a chance to tell David, and never will. He unexpectedly passed away this spring from a heart ailment. He was only 47 years old.

At Homewood, my case was baffling to the staff of the "White House," the aptly named building that housed the social workers, psychologists, and psychiatrists who dealt with students who had mental and emotional problems. I became well known there. It was frustrating for everyone, because I did not respond to psychotherapy or any of the drugs that were given to me. I was referred to a private psychiatrist, who saw me twice a week. A traditional psychotherapist, she tried to root out the underlying problems. But, despite long conversations in front of her fireplace, the attacks continued.

My life at Hopkins was reduced to seeing doctors and going to classes. I never stopped going to my classes, which, looking back, took a lot of courage. In fact, I threw myself into my work, and my gradepoint average was higher that year than any other. I enjoyed the subject matter but couldn't wait until each class was over so that I could go back to my apartment (where I was now living alone) and hide. Although I feared being alone, I feared having an attack in front of others more.

My tiny black-and-white TV set served as my entertainment and social life, as well as my connection to the world. My favorite night was Thursday, when I watched Kung Fu, The Streets of San Francisco, and The Waltons. (Yes, I hate to admit it, but I liked the series a lot. There was a family and the people were not alone.)

Though I had studied literature during my year in England, I was determined to try something new when I returned. So I signed up for a course in playwriting--Problem Drama. For my first assignment, I wrote a comedy about a man bringing his boss home for dinner. To my amazement, when the class read the play out loud, people laughed, including me. The play was one of five chosen to be presented before a student and an alumni audience. Elliott Coleman, the founder of The Writing Seminars was in the audience and he invited me to apply to their graduate program, a great honor.

Writing became a salvation. After all, writers are supposed to write alone. None of the students in my playwriting classes were people I knew from before, so they had no preconceived notions about me, nothing to measure me against. I was the mysterious loner, the writer who never went out for drinks after class, or stayed for a cast party. I remember one woman who found this intriguing at first, but later divulged that although others in the class admired my dedication to writing, they considered me aloof. I don't remember what I said in response, but I knew I was not aloof. I was afraid. If you can imagine holding your breath for as long as you can, and then being asked to hold it in longer, that's how I felt. I held my anxiety in as long as I could. When class was over, I had to get away and breathe.

BY THE LATE 1970s, researchers had seen enough cases like mine to realize that they were dealing with an illness that did not fit the pattern of traditional anxiety. People had attacks "out of the blue," unrelated to stresses in their lives, to the effects of a drug, or another medical condition. And the attacks could not be treated through traditional medicines for anxiety or talking therapy. They called this new illness panic disorder. However, neither I nor my psychiatrist knew about this. The results of the studies took years to be published.

After finishing up my master's at Hopkins I went back home to Long Island to live with my parents. I stumbled into a career in public relations, working for the county's Department of Drug and Alcohol Addiction. Many of the people I worked with were ex-addicts, ex-alcoholics. I felt right at home, another impaired person.

THEN, IN 1977, FIVE YEARS after my first attack, a strange thing happened. The severity of my attacks dramatically declined. I was able to go into New York City, to begin dating again, to start enjoying life a little more. I rediscovered a sense of play. When your every thought is of dying, you lose your sense of humor and enjoyment over little things--the pleasures of having an ice cream cone, enjoying a sunny day, or reading a book.

This is not to say, however, that I was completely back to being my old self-- the David Levine of my teenage years who loved tennis, rock music, politics, and travel. The David Levine who had no trouble making friends or attracting girlfriends. Though my severe attacks disappeared, I continued to have minor attacks when I took a nap. I became very vigilant, ever waiting for the first signs of anxiety that would signal the return of my illness.

In December of 1981, I went on a job interview in Brooklyn. I was standing on an open air subway platform when the heavens opened up, soaking me to the core. I jumped on the first train that came along and got off at a central station. There was hardly anyone around, but I managed to find a woman who could give me directions back to the city. Her name was Janet. Four months later, in April, we got engaged.

In June, my illness returned with a vengeance. My attacks continued and got worse. Over the years, I had learned to hide the effects of my attacks quite well, so for a long time Janet did not know how bad they were. By coincidence, Janet's brother was a psychiatrist studying panic disorder, and he was looking at the effects of beta blockers (which actors often use to temper performance anxiety) on panic attacks. I spoke to him about what was happening to me. He was the first medical specialist to give a name to my illness and he showed me a book listing all its symptoms--the very same symptoms I'd been experiencing all these years: fear of dying, shortness of breath, dizziness, etc. Best yet, he told me there were ways to treat panic disorder. He referred me to a colleague, who confirmed the diagnosis and began treating me.

I still see the same psychiatrist today. In doing my research for this story, I asked him if getting engaged had triggered the return of my attacks back in 1982. His answer: no. He pointed out that during those years my attacks disappeared, my parents divorced, I changed jobs, apartments, and girlfriends. The basic answer is that the attacks would have come back anyway.

Having an undiagnosed illness is very frustrating. I have worked at a cancer organization and have interviewed many cancer patients for stories. I was very surprised to learn that they felt better once they had a diagnosis, even if it was cancer. The uncertainty was more frightening to them than being told they were going to die.

I felt a similar sense of relief when my brother-in-law diagnosed me. But I was also very angry. All those tests, doctors, drug treatments, and therapy I had endured over the years had been a waste of time. The drugs given to me did not work because they were the wrong drugs. Today, doctors know that panic disorder is most effectively treated with antidepressants, such as Tofranil and Prozac. Although antidepressants like Prozac and Zoloft are relatively new, tricylic antidepressants such as Tofranil, and MAO inhibitors, such as Nardil, were used in treating depression as far back as 1972.

There is no question that my illness has affected my marriage. Panic attacks are not cured by medicine or therapy, only controlled. Drugs have side effects; the worst for me is insomnia, and I often wind up using my weekends to catch up on sleep. The drug I take, Nardil, has significant food restrictions, for example I cannot eat cheese or have red wine or chocolate. If I unknowingly eat a food that has been marinated, smoked, or dried, I run the risk of sending my blood pressure to dangerously high levels. Over the years I've tried going off my medication, and experimenting with other drugs, but no other drug has worked for me.

I worry, too, about my children, Rachel, who is 14, and Ben, who is 11. When I see them get worried about something, or seem a little down, I worry that I have passed on genes that will cause them trouble in the future.

Janet and I went for counseling to deal with many of the issues surrounding my illness, and I have made progress in some areas. I've started flying again, for instance--an activity I had given up for life, or so I thought, after my return flight from London in 1972. I now fly all over the United States and the world, alone, with the whole family, and on separate trips with my children.

My hope is that by writing with candor about my own experience, I can help dispel some of the stigma that continues to cling stubbornly to mental illness. To those who have suffered, or are suffering, mental illness, please realize that you are not alone.

Finally, last June, the time felt right to return alone and face my personal demons. If there was a key to the puzzle of my illness, I thought, it might lie in London.
One of my friends at Hopkins, who called me when David became ill, confided in me about the struggles he has had with mental illness as an adult. He said I must have had tremendous courage and strength to deal with it at such a young age.

In fact, many mental illnesses strike young people when they are college age. Most cases of panic disorder begin in young adulthood, as do depression, obsessive-compulsive disorder, schizophrenia, and manic-depression. To develop mental illness in college--without the social support of family and friends-- is very difficult.

My generation was brought up to think that we can solve all our problems (and the world's) without help. But that is not reality. You cannot wish a panic attack away and you cannot order a depressed person to cheer up. I know, I've been there. But, I feel that I am a lucky man because I survived, and I'm still here. There are many who are not.

Although I've traveled to France several times over the last few years, I had never returned to London until this past June. Finally, the time felt right to return alone and face my personal demons. If there was a key to the puzzle of my illness, I thought, it might lie in London.

I spent several hours strolling around the grounds of University College, and many memories did come rushing back. But they were good ones. I was happy to see my old school. I was happy to be back in London. Being there did not summon up the terrible memories I had feared.

The key to the puzzle was not in London. In fact, there is no key to the puzzle. The current thinking is that I was genetically programmed to have panic disorder on that May morning in 1972. A morning I just happened to be waking up in London.

David Levine is a medical editor for Pfizer Inc. and a contributing editor for Physician's Weekly. His articles have appeared in American Health, Good Housekeeping, and Woman's Day.