Maura: A Case of Disfiguring Tics
Late in her therapy, Maura took to lying back in the chair in my office, so relaxed she looked as if she drifted into a peaceful, tranquil state as we spoke. This involved a whole ritual for Maura: taking off her glasses and gently placing them on the small table beside the chair, leaning her head back into the soft headrest, closing her eyes, and relaxing her body, which seemed to melt down into the chair.
I would especially watch Maura's face at these times. A thirty-nine-year-old native of Ireland, Maura had milk-white skin and soft, delicate features framed by ringlets of auburn hair. As she continued to converse, reminiscing about her past, her face was a study in repose.
Unfortunately, this peace, hard won throughout a year of psychotherapy, was shattered by a chance observation on my part as I gazed at Maura's face. Suddenly I began to notice intense twitching all around her eyes. Her closed eyelids pressed more tightly shut. Waves of muscular contractions circled around her eyes. Bursts of this abnormal twitching punctuated periods of relative calm in which the muscles appeared to relax with just faint background activity.
How long had this twitching around Maura's eyes been present? I wondered. Was I just imagining that it was new? But I had been scrutinizing her resting face for months. Surely I would have noticed before. After I had observed the distinctive twitching for a number of weeks, I began to look for it when Maura was sitting upright with her eyes open and glasses on. Sure enough, the twitching was present at this time, too.
The image of Maura lying with her head as though on a pillow with twitches dancing around her eyes like fire came to haunt me because of what it portended. Maura had been in treatment with me for nearly a year. She originally had come for a second opinion about her medication, and had decided to stay on as a psychotherapy patient. The year before, her primary-care doctor had put her on Prozac for mild depression, because of her complaints of feelings of anxiety and tearfulness whenever she drove on highways. In two brief follow-up appointments, her doctor had doubled Maura's dose to 40 milligrams a day and given her a year's prescription for the drug. Primary-care doctors often see patients just once a year for an annual checkup. They frequently write year-long prescriptions for a host of drugs, from blood pressure medications to birth control pills. So when they prescribe serotonin boosters, writing a year's supply fits the routine for primary-care doctors even though this is not really appropriate to psychiatric drugs. At the end of the year, Maura consulted with me.
Maura grew up in war-torn Northern Ireland, in the small town of Ballymena. When she was eleven years old, she and her parents were innocent victims of a car bomb that exploded while they were driving to Belfast. Maura was badly injured, but she survived both the explosion and the trauma of witnessing the brutal death of both her parents. After living with an aunt for several years, Maura first came to the United States while in college. At the time that I met her, she was living in a Boston suburb with her American husband and their two daughters. As we pieced together her long-ignored, painful history, Maura realized that her depression began shortly before her elder daughter's tenth birthday. Like many parents, Maura would occasionally find herself daydreaming about what her life had been like at an age similar to her child's. As we talked, she realized her daughter was approaching the age Maura had been when her parents died. Her sudden sense of sadness and loss was worst while driving on highways, perhaps because it was a reminder of the fateful trip from her town into the city of Belfast. After several difficult months of reliving some of her traumatic memories and gaining a greater understanding of her symptoms, Maura gradually achieved the calm I was seeing when she leaned back in the chair. In anticipation of the well-earned end of therapy, we had decided to take Maura off Prozac and had lowered her dose from 40 to 20 milligrams.
"Have you noticed your eyes twitching lately?" I asked after observing the phenomenon for several weeks.
"No," said Maura, surprised.
I decided to write off the twitching as an anomaly, although now I wish I had made more of it. Not that this would have changed Maura's clinical course. A week later we stopped the Prozac. Prozac is a particularly long-lasting drug, lingering in the body for weeks. Two weeks after her last dose Maura called one day, frantic. "Something dreadful is happening to me," she said. "I need to see a neurologist. My lips are twitching and my tongue keeps darting out of my head." I told Maura that I would make time to see her, and to come to my office immediately. When she came, I was flabbergasted to see Maura's symptoms firsthand. Her lips now displayed twitching similar to that which I had observed around her eyes. But worst of all was the tongue-darting: fly-catcher-type movements in which her curled tongue darted in and out. The tongue-darting together with the twitching was disfiguring.
"Have I had a stroke? Do I have a tumor?" asked Maura, distraught.
"No," I said. "I don't think so. I believe this is a medication side effect."
"A medication side effect?" said Maura, dumbfounded.
"Yes. It looks like a tic disorder called tardive dyskinesia."
"Tardive dyskinesia. It's a medication-induced tic disorder."
"But I'm not on any medication. I've just stopped the Prozac."
Could Prozac be causing Maura's tics? I wondered. I hadn't heard of Prozac causing these tics, but I had a lot of experience with them in association with major tranquilizers.
"I don't know why you're having these symptoms," I said, "but with other drugs they often worsen or emerge after patients stop taking them."
"What are you talking about?"
My mouth dry, feeling anxious and confused myself, I explained that tics are a well-known side effect of major tranquilizers. Not only do these earlier drugs cause tics, they can also suppress or mask them, as long as the patient is still on the drug. The tics emerge only after the medication is stopped.
"You're not taking any other medications, right?" I asked Maura.
"Right," she confirmed.
"Have you ever been prescribed any other psychiatric medications?"
Since Maura had been on Prozac for two years and had not taken any other psychiatric medication, it seemed that Prozac was probably responsible for the tics.
"How can the drug be causing something when it's gone?" asked Maura.
"No one knows the exact process by which the tics come about," I said. "But we do know that they are caused by long-term exposure to certain drugs. Sometimes the tics become severe enough to overcome the drug suppressing them. But sometimes they only appear after the drug is gone. Removal of the drug brings out the tics."
In fact, with major tranquilizers the tics are a result of brain damage brought on by the medication, but in our initial conversation I avoided using these words with Maura, because she was already terribly upset.
"Will this go away?" asked Maura.
"There's a good chance it will."
"A good chance? What are the chances?"
"I don't know. I've never heard of this with Prozac."
"What are the chances with other kinds of drugs?"
"Major tranquilizers? In about half of those cases, the tics slowly go away."
"And the other half?"
"Sometimes they get a little better."
"But they're permanent?"
"Can they get worse?"
"In some cases."
"Oh, my God. Is there any treatment?"
This is one of the most difficult questions to answer, because patients are so desperate to maintain some hope. In fact, no treatment has proven effective for these tics. Many treatments have been tried, without success. The results with one treatment, vitamin E, have been inconclusive. Some studies show that vitamin E improves the course of the tics while other studies show that it does not. Since the results are not conclusive, I suggested vitamin E to Maura without creating too high an expectation.
After Maura left my office, I was distracted for the rest of the day. I was certainly familiar with the kind of tics she had. In fact, I had seen much graver cases, but only in patients who had been treated with older drugs. Physicians always feel guilty when their treatments cause new, sometimes worse problems. I hadn't started Maura on Prozac but had maintained her on it for a year. Had Prozac really caused the tics? I asked myself.
At the first opportunity, in a break between appointments, I pulled out the Physician's Desk Reference, a large volume containing the manufacturers' information on every prescription drug. I turned to the information on Prozac and found the section on side effects occurring in the nervous system. Sure enough, "extrapyramidal syndrome" was listed as a neurological side effect. Extrapyramidal syndrome is the technical term for four closely related neurological side effects, including tics like Maura's.
Even more telling was an entry I found under "Postintroduction Reports." This section describes side effects that did not appear during the testing of a drug but only after its introduction to the market. Here I was taken aback to find what sounded like Maura's side effect. It was listed as a "dyskinesia," meaning abnormal movements, and described as a "buccal-lingual-masticatory syndrome with involuntary tongue protrusion," which took months to clear after the drug was stopped. This certainly sounded like the types of tics I was seeing with Maura. Buccal, lingual, and masticatory are technical terms for cheek, tongue, and chewing, respectively. Abnormal movements of the mouth, jaw, and tongue are the most common form of the tics.
Over the next month, Maura's tics worsened. The tongue-darting became more pronounced and more frequent. In addition, she developed chewing-the-cud type movements, indicating involvement of the jaw. I performed a neurologic screening test called the Abnormal Involuntary Movement Scale (AIMS test), used to assess and monitor the severity of medication-induced tics. For the AIMS test, Maura performed a series of exercises while sitting, standing, and walking. I rated a number of different measures of abnormal movements of the hands, arms, torso, pelvis, legs, gait, and mouth, all of which can become involved in the loss of motor control. So far, Maura had only facial tics, the most common form of this disorder. Other facial movements can include grimacing and snorting. Movements around the mouth are typically lip-smacking, blowing, kissing, or puckering.
By now Maura was avoiding social situations. When she did have to go out, she wore sunglasses and scarves in an attempt to hide the tics. Of course her husband was well aware of them and alarmed. Maura suffered from the strain of trying to hide the tics from her children in order not to frighten them.
During this time I began researching the side effects of serotonin boosters. Side effects such as Maura's can take months or years to develop and therefore are not picked up in the short, six-to-eight-week clinical studies required to win FDA approval for new psychiatric drugs. Since the FDA simply does not have the resources for a systematic program for monitoring late-appearing drug reactions, the agency is forced to rely on random, spontaneous reports from individual doctors. As a result, there is no central clearinghouse that makes thorough information on long-term side effects available, even to doctors. Instead, one has to comb through hundreds of often obscure medical journals tracking down spontaneous case reports.
I spent whole weekend days in the bowels of the Harvard Medical School Library poring through esoteric psychiatric journals. I was amazed to find reports estimating thousands of cases of four different side effects involving loss of motor control. The first is tics like Maura's. The second is neurologically driven agitation ranging from mild leg tapping to severe panic. The third is muscle spasms, which, when they are mild, can cause tension in the neck, shoulder, or jaw, but can lock body parts in bizarre positions when severe. The fourth is drug-induced parkinsonism, with symptoms similar to those seen in Parkinson's disease. In this chapter, I refer to this cluster of four, closely related syndromes -- tics, agitation, muscle spasms, and parkinsonism -- as the neurological side effects of the drugs. I found reports that they were occurring with all of the serotonin boosters: Prozac, Zoloft, Paxil, and Luvox. These neurological side effects represent abnormalities in the involuntary motor system, which is a large group of nerves found deep in the older part of the brain. Normally, these nerves influence automatic functions like eye-blinking, facial expression, and posture. When the brain attempts to compensate for the effects of a drug, it can lead to disorganized, chaotic activity in the involuntary motor system and loss of motor control -- an example of Prozac backlash. In my experience, patients with any one of these side effects are at increased risk to develop the others, including tics.
One of the earliest published cases of tics associated with Prozac appeared in April 1992, in the journal Neuropsychiatry, Neuropsychology, and Behavioral Neurology. Dr. David Fishbain was the lead author in a team of five doctors at the University of Miami School of Medicine. The patient was a seventy-seven-year-old woman who was taking Prozac for depression and back pain. Prior to treatment with Prozac, she had no abnormal movements.
Forty milligrams a day of Prozac dramatically improved the patient's depression and pain syndrome. However, she developed severe facial tics -- described as "bon-bon" (candy-sucking-like movements) and "fly-catch" involuntary tongue protrusion. The movements "were repeated on a regular basis at a frequency of about 2-4 times per minute." The Prozac was stopped immediately and both the bon-bon and fly-catcher tics improved significantly within four weeks and disappeared over the course of several months.
Less fortunate was a forty-three-year-old depressed woman who developed tics while taking Prozac. This case was reported in the October 1991 issue of the American Journal of Psychiatry by Drs. Cathy Budman and Ruth Bruun in New York. The patient's "tongue was observed to dart back and forth across her teeth, and it also rolled and curled laterally. There were sucking and blowing movements of her cheeks and intermittent clenching of her teeth. These movements kept her awake at night." This woman's tics subsided but did not fully clear even after the Prozac was stopped.
In the October 1993 issue of the Journal of Clinical Psychopharmacology, Drs. Dinesh Arya and E. Szabadi at the Queens Medical Center in Nottingham, England, reported a thirty-eight-year-old depressed woman who developed tics while taking Luvox. The patient's tics consisted of bouts of dramatic rapid eye-blinking occurring four or five times a minute. Her lips would protrude and twist to the left side in "peculiar, repetitive, involuntary movements." She also developed severe clenching of her teeth, which left the muscles of her gums and jaw in pain.
Another published case is of a twenty-nine-year-old man treated with Prozac for obsessive-compulsive disorder, reported in the February 1996 issue of the Journal of Clinical Psychiatry by Dr. Nat Sandler of Lexington, Kentucky. After more than a year on Prozac, the patient developed abnormal facial movements, especially around the mouth, including tongue-darting. The patient was aware of the movements but not incapacitated by them. However, Dr. Sandler reported, "Concern over gross thrusting of the tongue led to discontinuation of Prozac. Within two months...the tardive dyskinesia symptoms [tics] began to lessen; after six months, there were no signs of mouth movements." Warned Dr. Sandler, "Clinicians should consider the possibility of tardive dyskinesia [tics] occurring in patients taking Prozac."
Not all cases of tics associated with serotonin boosters have been facial. The large muscles of the trunk and limbs can become involved. Doctors Brian Fallon and Michael Liebowitz at the College of Physicians and Surgeons of Columbia University reported in the April 1991 issue of the Journal of Clinical Psychopharmacology on a thirty-eight-year-old woman with mild lupus who was started on 20 milligrams a day of Prozac for depression. On Prozac, the patient developed "truncal dyskinesia [tics]" characterized by "mild involuntary pelvic rocking." Fallon and Liebowitz reported that the "pelvic dyskinesia [tics]...persisted without much change until after the Prozac was stopped."
Even more "complex movement disorders" after long-term treatment with Prozac were reported by Drs. Kersi Bharucha and Kapil Sethi at the Medical College of Georgia in 1996 in the journal Movement Disorders. One patient was a seventy-two-year-old woman admitted to the hospital because of loss of motor control that emerged after two years of treatment with 20 milligrams a day of Prozac. The patient had "constant" movements of her upper lip and jaw that made it difficult for her to speak. She had muscle contractions in the neck, jaw, floor of the mouth, and shoulders. Irregular, jerking movements occurred in both arms and legs. And the patient had involuntary wiggling of her toes. When the Prozac was discontinued "the involuntary movements ceased completely." While some of the patient's tics, twitches, and jerking resembled what is traditionally seen with major tranquilizers, others did not. Bharucha and Sethi advocated the use of the term "complex movement disorders induced by Prozac" because of the combination of a number of different involuntary movements in this and other patients. Much more research is needed to characterize the different types of tics, twitches, and jerking seen with these drugs.
As I told Maura about these and the many other cases I was finding, she asked, "Why aren't patients told about such severe side effects? Why do most doctors not even know?" In a way, this book is my answer to Maura's question, an attempt to remedy the lack of public information on this phenomenon.
While Maura and I anxiously monitored her tics, waiting to see what would happen, she wanted to review why she was put on Prozac in the first place. Here she was like a trauma victim wanting to go over the scene of the crime, looking for clues to how things might have gone differently. In fact, Maura's original symptoms had been relatively mild. For about a month she felt down with sudden feelings of great sadness and loss. She had episodes of feeling particularly upset while driving on the highway. But she had none of the physical symptoms of moderate and severe depression: difficulty sleeping, change in her appetite, poor concentration, inability to function, or suicidality. I thought Prozac was too powerful a drug for her mild distress. When she first consulted with me, I had said this to Maura. She had been taking Prozac for a year, however, and she felt stable on it and did not want to change. Since I had not been aware of the serious side effects emerging with the drug, at the time I did not push too hard for her to stop it. In retrospect, it was awful to think Maura might not have needed Prozac in the first place, given the disfiguring side effect she was now experiencing.
Psychiatric syndromes have two parts: a psychological core and superficial physical symptoms. As we discovered, the core of Maura's difficulty was her parents' traumatic death during her childhood. Long dormant, this trauma was reawakened by her daughter's approaching the age Maura had been when her parents died. Since Maura was not aware of the true source of her upset, she developed symptoms, becoming distressed and tearful, which were a kind of code or flag raised over her distress. Psychotherapy consists of deciphering the code and bringing the flag, or symptoms, down in the process. By contrast, medications only suppress symptoms. They are like crutches or Band-Aids. By themselves, they are never a cure. As such, they should be used only as adjuncts to the real healing, aids used to buy time and protect the healing process. Since medications entail risks and dangers, they should be used only when truly necessary. The least invasive medication should always be chosen, and even then, medication should be used judiciously.
Unfortunately, primary-care doctors do not have the training or time to evaluate and treat the psychological core of psychiatric syndromes. But under managed care and in HMO settings, they are under pressure to treat the psychiatric conditions of their patients. They are trained to follow simple protocols, or algorithms, which look only at the superficial symptoms. Maura, for instance, was medicated according to a simple "If depressed, then Prozac" model. Primary-care clinicians are not trained to explore questions like How mild or severe are the symptoms? How often are they occurring? Why is it happening at this particular time in the patient's life? This more informed, thorough approach requires a specialist -- a psychiatrist, psychologist, or social worker -- none of which were available to Maura until a year later, when she sought a second opinion from me on her own initiative.
At the two-month mark, Maura's AIMS test showed her tics had stabilized. They no longer appeared to be worsening.
"They seem to get worse when I'm stressed or anxious. I seem to chew and stick my tongue out more," said Maura, unconvinced they were stabilizing.
"Stress exacerbates these tics, for reasons that are not clear," I explained.
Relating a comment of her husband's, Maura added, "John says my tics disappear when I'm asleep."
"That, too, is characteristic."
By the third and fourth month Maura's tics were gradually improving. At the four-month mark, when I performed the AIMS test, the most dramatic of her tics, the chewing-the-cud and fly-catcher tongue-darting, were gone. By six months Maura's tics had largely cleared. She was left with permanent, subtle twitching around her mouth and eyes, but incorporated into her facial expression, these were not noticeable to the casual observer.
Maura only gradually regained her confidence in social situations. Losing the fear that a tic would suddenly act up in the middle of a conversation took months to achieve. Once she regained most of her former ease and was less self-conscious again, Maura no longer needed to be in treatment. She was finally able to stop therapy a few months after the ordeal of her tics.
Maura's case and my research confirming other, similar cases left me thoroughly sobered about the safety of these new serotonergic drugs, tics such as hers being the dread side effect of psychiatric medications because no effective treatment exists. With major tranquilizers, the earlier class of drugs associated with the tics, they develop silently, are often masked by the drugs that cause them, and can be permanent in as many as 50% of cases. In some cases, the tics lead to wide-based, lurching gaits; swinging and flailing of the arms; or twisting and writhing of the hands. Why some patients develop the tics more quickly than others is not fully understood. They may be caused by cumulative damage resulting from exposure to certain drugs, viral infections, central nervous system diseases, and the loss of brain cells that occurs with normal aging. Thus the elderly are more likely to develop tics quickly, as are people with prior exposure to drugs causing similar damage. When the tics began appearing with major tranquilizers, it was thought that only certain vulnerable populations like the elderly or medically ill would develop them. It is now recognized that anyone can develop them, including young, healthy patients. With long-term exposure to the drugs, the emergence of tics steadily increases over time. A study being conducted at the Yale University School of Medicine has estimated that 32% of patients develop persistent tics after 5 years on major tranquilizers, 57% by 15 years, and 68% by 25 years. In addition to patients who develop overt tics, many have tics that are suppressed by the drugs. When patients are taken off major tranquilizers specifically to look for tics previously not present, 34% of patients have tics unmasked by stopping the drugs. With tics associated with serotonin boosters, we do not know how many patients will ultimately develop them or what percentage might be permanent. Serotonin boosters are still relatively new and these side effects have not been studied systematically. But what we know from the side effects with major tranquilizers is cause for serious concern.
The research I had done in response to Maura's case had taught me that serotonin boosters cause not only the tics but three other, closely related neurological side effects. Having witnessed the first of these disorders, I now wondered if I would see the other three. From my earliest days as a doctor, I learned to expect that drugs that cause one of these side effects will often cause the others as well. In addition to tics, the other neurological side effects are muscle spasms, agitation, and drug-induced parkinsonism. Had I seen them already, I wondered, and mistaken them for something else? Might the "caffeinated" feeling so many people describe when starting serotonin boosters, in fact, be neurologically driven agitation in some instances? Later on, after being on the drugs weeks or months many patients develop "paradoxical fatigue." Most doctors consider this fatigue to result from the nervous system's being in chronic overdrive due to the drugs' stimulating effects. But might it be fatigue caused by drug-induced parkinsonism? How would one differentiate these symptoms from the patient's underlying depression? I wa
Overcoming the Dangers of Prozac, Zoloft, Paxil, and Other Antidepressants with Safe, Effective Alternatives
Overcoming the Dangers of Prozac, Zoloft, Paxil, and Other Antidepressants with Safe, Effective Alternatives
Written by a doctor with impeccable credentials, Prozac Backlash is filled with compelling, sometimes heartrending stories and is thoroughly documented with extensive scientific sources. It is both provocative and hopeful, a sound, reliable guide to the safe treatment of depression and other psychiatric problems.