Yesterday, my colleague Jeff Fortuna and I had the pleasure of spending the afternoon with our dear friend Joanne Greenberg. Many of you may know her as the author of the semi-autobiographical novel I Never Promised You A Rose Garden, and also as one of the very highly respected voices of authority around recovery from mental illness—the term she prefers over others such as mental health challenges. As we were leaving the hospitality of her wonderful mountain home, I shared with her that I’d be writing this introduction today and asked if she had anything to pass along about the use, or non-use, of psychotropic medication.
She quickly but thoughtfully replied “in my day, we really didn’t have anti-psychotic meds, just things to help us sleep.” But from there, she sadly went on to explain how a number of her friends have been on too much medication for too long, and that even though they’ve produced some kind of stability, in some cases the side effects have been devastating. Overall, while acknowledging that medications can be highly useful in helping someone come back to the grounding contact of ordinary life and relationships, it was critical that they’re continually assessed for their ongoing usefulness and dosages. Particularly important, is to never communicate that one’s “illness” is a life-sentence, and that because of which, one will always need medication.
Today’s Journal entry is an excerpt from Recovering Sanity (pages 227 – 237). What you’ll read here directly echoes Greenberg’s reflections, while encapsulating much of what Ed Podvoll felt and thought about the usefulness and dangers of psychotropic medication. As this is such complex and emotionally charged territory, his practical, health-based synthesis around how to view their possible use provides valuable clarity. And very importantly, he suggests disciplines that may become tools for a lifelong path of optimal health—with or without medications.
Much has happened in the world of medications since Podvoll first published his work in 1990. Many new ones have been introduced, Integrative Psychiatry is exploring the potency of alternative medications in combination with the power of one’s lifestyle, and a lot has been written on their dangers. Authors such as Peter Breggin MD, Will Hall, Michael Cornwall, and Robert Whitaker have provided valuable education on how to safely reduce or withdraw from its use. Considering all the various new understandings that have developed in the last 30 years on this topic, Podvoll’s insights and practices around the skillful use of medications have held up very well. I hope you find his words helpful.
Discovering Islands of Clarity: Recovery from Medications
An Excerpt from Recovering Sanity
By: Ed Podvoll
By the time Karen left the hospital, she was on a large dose of antipsychotic medication (Stelazine, 80 mg a day). One week after she entered her Windhorse home, I began the steady and incremental reduction of the medication, until at the end of three months she took none. This was a somewhat quick withdrawal, but I felt that Karen had the courage and the state of mind to do it. Above all, she hated the medications for what they did to her body and mind. The withdrawal required not only a great deal of effort on her part, but also a sense of risk for her team. In a similar way, all the patients we worked with in the Windhorse project were more or less withdrawn from their medications. This is one of the goals of the Windhorse style of treatment.
Currently, there is great debate as to whether it is advisable to remove the medications that some believe to be the “life-support system” of those who have been on a long-term program of medications. Some feel that it is even morally and professionally reprehensible to do so. It is both a critical and complex issue involving treatment philosophy, the law, social policy, and a huge psycho-pharmaceutical industry. This combination of social factors has produced enormous debate and confusion about the medications. The proper usage of the chemicals has become the public health issue in psychiatry today.
The view against medication withdrawal is counterbalanced by many former patients who have been forced to take the medications for extended periods, and who warn of the dangers. For people who are on “maintenance” medications, the natural history of the drugs becomes bound up with psychosis itself. Chronic usage of the medications leads to a readjustment of one’s brain physiology and microanatomy. The drugs become part of one’s brain-mind system and produce an unstable state. As was seen in the case of L-dopa, patients frequently cannot live with them or without them. The urge to be “medication free” becomes one of the most powerful motivating factors in one’s life. Then, the struggle against the effects of medications, and finally against taking the medications, can become as great as the struggle against psychosis itself.
In spite of over thirty years of widespread use of these drugs, there has been virtually no thorough examination of their psychological effects on normal “control” subjects or volunteers. Apparently, there is much more fear and reluctance to experience the effects of antipsychotic medications than there is to experience the psychosislike effects of hallucinogens. But anecdotal evidence abounds: these medications cause incomprehensible and painful body sensations and a generalized intellectual deterioration in anyone who takes them. (This can be easily demonstrated. It has been said that anyone can experience this effect when the drug is merely taken for four consecutive days, while others say that even a single dose can give you a glimpse of these effects).
By this time, it is well known that medications are not a “cure” for psychosis, that they do not specifically affect voices, visions, or delusions. Primarily, they have been given to control behavior. But at times, they do lower the “amplitude” of outrageous sensory phenomena, or they lower the excitement and panic caused when the senses are in disarray. All this is important when the medications are given with great care; that is, when they are given in as small dose a dose as possible, and when they are incrementally withdrawn as soon as their therapeutic effect is achieved. They may give a patient an opportunity to live with some relatively quiet moments, when the sensory phenomena are not so imperious, and when one can turn away from the hallucinatory demands to live in “two places at once.” There may be some precious spare time to relax, to begin to approximate reality, and to gain some semblance of dignity but not appearing to others as continuously distracted and forgetful.
But, for those who rely only on the medications, the “other world” remains just under the surface. And, they find that very gradually, the quality of life in the other world become progressively poorer. A young man, who I had not seen for two years, took me aside at a mutual friend’s birthday party to tell me how the medications had transformed his life. Indeed, he looked transformed, he looked about twenty years older. We quickly found our sense of connection and friendship, in spite of my dismay. Since I had last seen him he had begun a “maintenance program” of medications, and there and then he wanted to share with me a gift of his final deliberation about the medication effect. He said that the medications had not stopped his run-away delusions and interactions with an exotic and organized other world; but they had transformed them into a tawdry and degraded version of their former selves. For years, his life had revolved around a stormy relationship with a beautiful and powerful woman who lived in the cosmic dimension of his other world. The subtle effect of the drug, he said, was that she gradually changed into a demanding derelict. Now the only remnant of her former power to change the universe in a moment was her paltry ability to torture him. I thought to myself, is this what it will take—her loss of power—for him to break this master-slave bondage? But after that happened to her, he said, his own life also began to deteriorate; he was “getting along,” he added, he but had had little enthusiasm for his life because he felt destined to live the same impoverished existence to which she had reduced.
This is one genre of medication-induced recovery, one that I have come to recognize many times since it was pointed out to me. There are many variations. A young college student consulted me about her “depression” and her inability to do her schoolwork. One year earlier she had taken LSD and had a terrifying reaction to it. At first it was ecstatic: She experienced herself as a messiah who been “sent” to help all human beings. She was briefly hospitalized, treated with antipsychotic medications, and sent back to her family to “recuperate.” She was told she would have to remain on medications for a long time, and that if she reduced the dosage her “latent psychosis”—which the professionals felt had been activated by the LSD—might reappear. Because of this threat, she and her family decided to “play it safe”—the medications were never withdrawn, and she resigned herself to a lifetime of medication dependency. As time went on, she became increasingly depressed about the loss of her former life. Since early childhood she had studied music with great interest, had painted, been vivacious, and had many friends. Now, she dreaded awakening in the morning to face a day of vacuity, boredom, lack of curiosity, and a sense of “laziness.” As soon as she and I began to reduce her medications, she had dreams of being in a Garden of Eden, where people were kind to each other and where she glimpsed her lost joyfulness. Within two months after complete withdrawal of medication she started to regain her former energy and exuberance.
From many experiences of this kind, and from the success in withdrawing Karen and others, I have come to believe that medications can and should be reduced when the correct preparations are made, and some guidelines are understood. Such guidelines, for one reason or another, are not available in the “scientific literature.” I find the most informed procedure for drug withdrawal to be in the little-known manual called Dr. Caligari’s Psychiatric Drugs, published by the patient advocacy movement. It advises the “10 percent formula”: a reduction of 10 percent of the original dosage each week, as long as the patient’s response is positive, although smaller reductions may be needed as one approaches the end. It is always best not to do the withdrawal alone. In the Windhorse project a whole team of people were attuned to the withdrawal schedule and helped the patient in what needed to be done. In this way there was a very sensitive monitoring of the body and mind effects of the withdrawal schedule.
In most traditional medicine the most fundamental and favored type of treatment is the modification of behavioral and dietary patterns, as it is the most gentle manner of therapy and the first to be relied upon for the treatment of anything. The further instructions for diet are more difficult to establish. In general, the daily diet of people who have been on maintenance medications for many years is atrocious, always verging on being toxic. This is usually a reflection of their lack of attention and care of themselves, to the point that any change of their diet is usually resisted as a massive intrusion. But the work of recovery in general, and withdrawing from medications in particular, involves a process of cleansing. This requires quite a shift of attitude. A modified “macrobiotic” cleansing diet is the best that I have seen for this purpose, and obviously, the difficulties of adhering to such a diet are greatly reduced when the whole “household” is on it. There are also two herbal medicines that I have often found useful, valerian and bancha root teas, freshly brewed and taken several times a day. Valerian is noted for its calming effect on the nervous system (and incidentally, the only remedy that John Perceval found useful to him); and bancha tea is known as the great “balancer” in the macrobiotic system.
In coming off the drugs there are some minimum requirements in regard to the instructions for behavior. The right amount of exercise has proven to be important. For example, long hikes are good, not only for helping the body eliminate the drugs, but also to overcome listlessness, stiffness, and uncomfortable body sensations. But, as Dr. Caligari cautions: “Moderation is a key principle: as you increase your activities, do so gradually.”
The actual experience of “coming off” is, of course, very individual and is completely dependent on one’s own attitude, state of health (for example, the amount of drug accumulation in body tissues), and the maturity of the people that one is with. Let us use the example of withdrawing someone from long-term usage of Prolixin (about fifty times more potent than Thorazine). There are bodily reactions to this experience of withdrawal that are surprisingly similar to reactions to withdrawal from opium dependency. The reactions to Prolixin removal may peak during the first week and then gradually diminish: “flu-like symptoms, such as nausea and vomiting (at times severe), sweating, runny nose, insomnia, diarrhea, restlessness, headaches, and aches and pains. With the exception of severe vomiting, all these can be suffered through without special attention.”
The experience of “restlessness,” however, does merit special attention. Fidgeting, leg-swinging, pacing, and agitation are not only signs of being uncomfortable in one’s own body, they are also expressions of surges of energy appearing in the mind. For people who have been taking the medications for a year or more, sometimes even the slightest reductions can unleash a mental speed that they are unaccustomed to handling. And with this comes an extreme sensitivity to the environment, especially to how one is being treated by others. It is a time when one may no longer feel docile, submissive, or simply, submerged in his “own world.”
In this sense, withdrawal from medications and recovery from psychosis are similar: They both expose certain sensibilities. To one degree or another, the recovering one becomes very critical of the treatment he is receiving. And that expands: He is bitter about a long series of treatment failures and disparages many people in the links of the “system” (crisis services, police stations, acute wards, back wards, halfway houses). He speaks corrosively about the faults he uncovers, even those from his childhood, which now he remembers. John Perceval believed that this state of “outrage” was a mandatory state of recovery. Of course, the outrage may also be his undoing. But he feels up against a ruthless paradox: His anger on the one hand may inflame the speed, which leads to a major “imbalance,” yet he feels that anger is his only vehicle to make his voice heard and to avoid the injustices and errors that he sees in his treatment. This Is not simply the result of a mechanical event whereby natural chemicals are released from suppression and exert their psychosis-inducing excitations, the so-called withdrawal psychosis. It is also the time of a generalized awakening to his environment, and to the conditions under which he has suffered.
To him, he feels that if he suppresses this new found freedom of caustic expression he will be reduced to some dumbfounded state of being, where he cannot process at all and where he will once again fall under the dominion of his other world. He may also remember that, in the past, when he clamped his excitement and critical intelligence, he succumbed to a profound depression, the so-called post psychotic depression. In any case, depression seems unavoidable when during islands of clarity he awakens—to disillusionment; to a sense of humiliation and guilt; to fear of what comes next, what to do next; to a feeling of impoverishment, lacking the strength and skills to go further; to a nostalgia for the power and superiority of “manic consciousness”; and to the disloyalty of his shift of allegiance away from the despotic protagonists of his other world.
Patients and doctors seem to generally agree that abrupt withdrawal from long-term medications is ignorant and dangerous; the shock to a nervous system that has been habituated to them is too great, and the whiplash can be overwhelming. Even the graduated withdrawal of medications can be a difficult process. On the other hand, there is a great deal to be learned by the person who gradually withdraws. In small increments, one can experience energies of mind being freed from restraint. Under these conditions one can learn to watch one’s mind in a new way and observe subtle changes in one’s concentration and emotional intensity. Such attention to the details of the real changes that occur during withdrawal from medication has proven to be very important in one’s overall recovery from psychosis; it strengthens one’s ability to discriminate mental events and can give insight into how one functions.
When a doctor and a patient agree to the withdrawal of anti-psychotic medications they should have a common understanding of what they are doing. This common understanding can be summed up in the following “memo” which was given to all staff and patients of a Windhorse-style treatment community.
Medication Reduction Guidelines
There seem to be two broad categories of medication reductions:
-Reduction due to acute toxicity (e.g., liver damage, abnormal movements) or subclinical toxicity (e.g., nausea or drowsiness). Basically, someone is taking more medication than he needs, and the excess is making him sick. As quickly as is possible and safe, dosage should be reduced to the minimum need for stability. There is no immediate goal of further reduction to substantially smaller dosages, though this might follow later.
-Slow, graduated reduction for therapeutic purposes. Someone is stable in his present dose and the team agrees that it is time to reduce gradually. This is a slow and open-ended situation. For example, dosage might be gradually reduced to 50 percent of original dose, held stable for awhile, increased briefly when necessary, and eventually reduced to zero. In order to reduce side effects and enhance stability, no medication should be reduced more quickly than 10 percent of the original dosage per week.
To further support the medication reduction process, life-style changes and disciplines such as those listed below should be encouraged. How one’s overall life will have to change, in addition to simply swallowing fewer pills, will be a major focus of team meetings and basic attendance shifts. The following general guidelines, while somewhat ideal, can be tailored to individual cases.
- Changes in diet. Less consumption of foods that increase toxicity (red meat, sugar, alcohol, coffee) and more use of foods that have a cleansing effect (bancha tea, whole foods such as brown rice and fresh vegetables).
- More physical exercise. Physical activity helps the body process and eliminate toxins, improves overall health, and provides a channel for energy freed up by reducing medications.
- Taking all medications. Ironically, one has to take meds in order to reduce meds. Sporadically “cheeking” or refusing meds undermines the whole medication reduction process. Only by knowing exactly how much of a particular drug is entering someone’s body can we gradually reduce the intake.
- Uplifted environment. Cleaning one’s room, doing chores, wearing clean clothes, and keeping one’s body clean are especially important when reducing medications.
Medication reduction requires open communication between client and team member, and among the community in general. For example. If team members think a client is escalating and might need a slight increase in dose for a while, and the client cannot hear that concern, this could undermine the reduction process. On the other hand, reducing meds may heighten clients’ clarity of mind so that they notice aspects of staff behavior they had overlooked before. So, if a client complains of feeling mistreated by a team member, it Is crucial that everyone listen and be receptive to each other’s views. In addition, it is important that the entire community understand how medication reduction works and who is reducing what. We can actually share a feeling of celebration as a community in this process.
There are a million details we can learn to play attention to: how you feel in the morning, when you feel irritable, how your mind gets speedy and how it slows down, when the world inside demands attention and when the world of sights and sounds seems more important. By tracking these states of mind, as well as bodily sensations and emotions, we can learn how we are affected by medications, diet, exercise and so on.
The prescription and withdrawal of medications can both be made simpler by understanding why the medications are being given. Whatever else a mediation should do, it should address the major suffering of a person at that time. When one is recovering from psychosis, there is no event more constantly disquieting than the struggle of living in “two places at once.” A recovering person may be going along quite well, only to run up against a great fear that “unbalances” him and triggers the demanding presence of that other world, the one that he thought he had left behind like an old nightmare.
A journalist from a British magazine has told the following provocative story of her illness and recovery from a split world. After working many sleepless nights on an article about “sprit possession,” and on her way home one evening, she experienced a seizure of self-revulsion and an “urge to transform”: “I longed to be quit of it all. I longed to get quit of my physical body altogether, by sheer effort of will. I longed with an intensity that made my head begin to feel quite queer and dizzy.” That night, she awoke from sleep and experienced herself split into three different dimensions, from the solid body to the “etheric,” and the “spiritual” body. For the next couple of days, she was in a massive sensory disarray, during which all of her thoughts materialized into vivid reality. Within days The Delusion formed: a “fiend” had gotten inside her body, had seduced her, and now she was forced to bear a fiend-child.
Thousands of voices later, her other world took on great shape and complexity and involved many characters. For long periods she lived only in that world. It was interspersed with episodes of blood curdling screams and shrieks and all the torments of living in the realm of “hell.” But, all that time, she says, I was fully aware that I had gone mad… fully aware, from that indescribable shattering of my brain- substance by those screaming voices, that I had gone out of my mind.” And then she lost awareness and passed into a delirious unconsciousness. Awareness of her situation came and went.
She was brought to the hospital and there she lived through vivid experiences of her death and revival, being pulverized to dust and reformed, over and over again. Separate zones of consciousness either fully dominated to the point of trance or might disappear altogether. Once, for days she lost all bodily consciousness whatsoever, yet at the same time, her auditory consciousness was absorbed in a continuous hallucination of single musical composition.
She was entangled with the voices. They attacked her, commanded her, beguiled her, and promised her damnation or beatitude. She struggled continually by reasoning and arguing against them, until finally she would give in and do what they told her, no matter how ridiculous. All of this was happening in the other world, which she called the “thought world.” During this, her body felt lifeless and she appeared to be dead. Then, after about two weeks: “one evening I suddenly awoke to normal consciousness—I mean consciousness of my real, bodily surroundings—and found myself out of bed, with two nurses standing on each side of me, supporting me. I remembered all that had been occurring, and I felt so weak and ill I could scarcely sit up.”
That shock of awareness, followed by immediate reaction of horror and revulsion, led to a quick relapse. The voices returned, as enticing and tormenting as ever, even more so. Other short-lived islands of awareness would then occur, only to become also quickly covered over. Soon, these “lucid” intervals came more often: “I began to gain more consciousness (at intervals only, most fragmentarily) in the following days.” She became convinced that the medications (probably bromides) which she was forced to take, caused her to lose her awareness. She said that each time she was given the medication, her “heart stopped” and she would become lost in the frantic activity of the “thought world.”
The islands gathered and seemed to peak with her singular experience of a physical and mental “clicking in.” When this happened, she had no choice but to speculate about this experience, which she labeled the “moment of recovery.” Later she developed her own theory—a “metaneurology,” as Custance would have called it—and it was based on exquisite bodily experiences. She theorized about a particular kind of “imbalance” that she felt was worthy of “scientific” scrutiny. Briefly, it is this: a “dislocation of the physical brain-apparatus takes place in acute mania, and no mad person can ‘recover his sanity’ until that dislocation has become re-set. From her point of view, losing one’s mind is a terrible mind-body desynchronization. The consciousness of self becomes separated from the physical body. And the physical body is separated from the “etheric” body (still another expression of being in two places at once). She says that this can happen by degrees: “The trouble in madness is that a separation has taken place between two ‘sheaths’ (the physical and the etheric) which should never be separated during the lifetime of the physical body; and which cannot be separated, partially, without causing serious physical injury, or completely, without causing the death of the physical body.”
From all such accounts, a general rule of recovery could safely be stated: Anything that promotes body and mind synchronization will further the appearance of islands of clarity, and anything that induces or accentuates body and mind separation can become a fatal obstacle to recovery.
Can there possibly be a medication that would address this situation? Wouldn’t the search for such a medicine be more fruitful than the current narrow pursuit of chemicals that always disorganize the neurotransmitter network? Supposedly, it once existed. It has been called “Sanjivani”: a drug used since ancient times in India because of its tendency to “draw back” the mind into the body again and knit it more closely together—thus insuring the normal unity that they should have. This medicine is said to have the effect or property of “bringing back” the consciousness, after it has been “driven out” by an anesthetic or otherwise.
What is Sanjivani? What is in it? No one seems to know if Sanjivani still exists or ever existed. No Indian or Tibetan herbalist I have asked has ever heard of it. In Hindu mythology it was said to have been an herb that grew in the foothills of the Himalayas and only on the south side of certain mountains. Even the Hindu deity hanuman could not find it. He had been instructed by Lord Krishna to gather the medicine and bring it back. Hanuman found the mountain but could not identify the herbal plant, so he brought back the whole mountain instead. If it is a mythical medication, it certainly seems to be the ideal medicine to heal the body-mind problem of psychosis.
Edward Podvoll, M.D., (1936–2003) was a psychiatrist and psychoanalyst, and founder of the Contemplative Psychotherapy Department at Naropa University in Boulder, Colorado, which he directed for twelve years. He was also the founder and medical director of the Windhorse Project, an experimental and highly lauded psychiatric community whose focus is on compassionate treatment that emphasizes the patient’s potential for sanity.