My 15 Year Medication Tapering Journey
I am not out of the woods… yet.
I am down to 2.6301 milligrams from 100 milligrams of Haloperidol. And I am not sure what will happen each time I taper. I am a guinea pig of the Medical system; an experiment. And no expert knows how to successfully help me off this stuff, because very few, until quite recently, have ever considered that we shouldn’t be tampering with the delicate orchestration of the human brain. Once on these drugs you’re told that you need them and that you’ll be on them for life! I am challenging this assumption, and seeing if I will do better and recover off the drugs.
The drugs I was on were too strong and extremely addictive. They changed my brain to an abnormal state. The drugs kept me from seeing my true self for nearly 34 years. I decided to taper from the drugs 15 years ago, but I couldn’t get any help to do this from anyone. So I began the journey on my own.
To be honest, I never felt that Haldol, or any other psych drug that I took, for that matter, did anything beneficial for me. It never changed how I saw the world or how I used my thinking, observing mind; though it shut down my daily functioning to such an extent that I wasn’t living anymore. I had been forced to become a vegetable without spirit, without love or empathy, without aspiration. But I still had my education, my will and my integrity, and I knew deep down that this forced drug “treatment” was all wrong. That the crisis I had been through as a sensitive 23 year old was one of the spirit, not one that could be fixed with any pill, a crisis that many of us through the ages have been through and safely gotten to the other side.
How It All Began
I had fallen into a trance. Not the “trance of unworthiness,” a delusion that the dharma teacher Tara Brach talks about in her books and talks. This was a deep trance into a mystical altered world where everything I had believed to be true up until that point was dissolved into infinite meaningless particles and scattered to the cosmos. Some might call this a psychosis, a break down. Of course, this spiritual experience was pathologized by those around me, so I ultimately ended up on a psychiatrist’s couch. And after just 15 minutes of talking with the doctor, I was given a prescription for Thorizine, Xanax and Elavil. And then my doctor saw me regularly, 3 days a week for 18 years. The cost to my parents was extraordinary. I don’t even want to compute the emotional, spiritual and physical costs I endured, let alone the financial burden on my parents and the government, since I am now on SSD.
These drugs made me feel really, REALLY awful. They took me further away from myself, rather than closer to whom I was. I acquired that “Thorazine shuffle,” I drooled on myself, my head felt constant pressure, I made puckering facial expressions, I slept all day and night, gained 35 pounds, had chronic fatigue, restless legs, and I couldn’t keep still. It was agonizing. The irony of it was that although I was completely disabled by the drugs, I was expected to start working.
So after 3 years of my mother’s home cooking and regular swimming, photography, commercial art and dance classes I began to show a semblance of normalcy. I got acclimated to the drugs, and although I was still very disabled from them, I was able to function just well enough to work as a cog in the proverbial wheel. So my father found me a dismal, skill-less, mindless and uninspired entry-level job in his publishing firm that paid a minimum wage. The work was repetitive and mundane and completely below my skill set as an Art History and Economics graduate with honors from one of the finest universities in the nation.
I had been placed on many, many different psych drugs over the years, in all classes from several different doctors, and I had suffered through several terrifying, coercive and traumatic hospital stays when the drugs didn’t work as expected. I was switched cold turkey from one drug to another upsetting my equilibrium where my neurotransmitters became chronically sensitive and taxed by all the abrupt drug changes done by “experienced” doctors. It was 2001 and my physical health was progressively getting worse. I had switched jobs several times and ended up as a technical support specialist for several different publishing companies. The pay was always low and I never got promoted. I was often bullied by my bosses and was very unhappy in the corporate world.
When Enough Was Enough
It wasn’t easy doing this taper on my own. I would cut pills in half and ask my doctors for smaller pills, often getting resistance. I had to pay tons of money to these doctors because I still needed to see them regularly to fill prescriptions. I also had to pay lots of money for the drugs, which often weren’t generic and were outrageously expensive. My insurance hardly covered any of this.
I soon realized that allopathic doctors were merely pill pushers and never got to the root cause of my health conditions. So I looked into Alternative Medicine to help quell the side effects of the drugs. I researched mega supplement therapy and the Orthomolecular movement and started myself on large doses of vitamin C and niacin. Then I went to an Integrative doctor who helped me with environmental illness and toxicity. I had my mercury fillings removed. I got an air filter and water filter for my apartment. I disposed of all toxic cleaning fluids and body care products, I started taking other supplements as well, and most importantly, I began to change my diet.
By 2005, over one vacation, I took a class at the Kushi Instutute in Massachusetts on “The Way to Health,” and discovered many things about “food as medicine” which was totally fascinating. The thought that you could heal yourself by eating healthy delicious organic foods was mind blowing. The Kushi Institute taught about a Macrobiotic diet, which consisted of whole grains, mostly cooked vegetables, beans, sea vegetables and some fish.
My diet ultimately evolved to a gluten free whole foods diet when I took a year long weekend series in 2007 on health coach certification at the Academy of Healing Nutrition in NYC. I also took many classes at the Natural Gourmet Cooking School in health supportive cooking. I read many books on healing, too, and started learning about Buddhism and Meditation.
By then I had worked at the New York Times in Systems and Technology for 9 years and was completely exhausted. I slept every free moment after work and on weekends. I soon began to miss at least 1 day a week of work from fatigue and depression. As I was reducing my med, I was becoming more and more clear about how I felt about the thankless, grueling, underpaid stressful work I was doing, compounded by the internal stresses of layoffs and buyouts always on the horizon. I was very unhappy. I was also getting rebellious with my boss who later brought me up on charges of insubordination. I eventually walked out on her and the job after she humiliated me in front of everybody in the department including a respected Journalist who happened to be there. I went on an extended family leave and then on disability with the company. I then hired a lawyer and applied for federal disability and was awarded SSD in December 2010. I was finally free to devote myself completely to my healing.
The Wheel of Withdrawal
But things didn’t go well with the withdrawal. I was doing a “water taper” that I learned about online; by cutting and crushing the drug and mixing it with measured amounts of water, but I couldn’t keep track of the reductions and I soon landed in the hospital again, and then again several more times in 2012 from rebound psychosis that occurred from the withdrawal. Again and again I was placed on high doses of drugs. Again and again I began reducing them on my own, once I had the chance.
In late winter of 2012 I became highly sensitive to electrical magnetic charges coming from almost everywhere and I had a reaction of intoxication or “spell binding” from the withdrawal effect. This resulted in a spontaneous decision to fly to Florida, taking my cats with me, and having no arrangements when I got there. I don’t like to think of this time and I tragically lost one of my cats there. I was hospitalized in Miami for several months while not knowing what had happened to my other cat and I was at my lowest point.
Once I got back to NYC, I had to rebuild my life again. Fortunately, I got one of my cats back. He was rescued by my sister in Florida, flown back to NYC and placed in a foster home by my brother during my hospitalization.
I was hospitalized again in NYC soon after my return, angrily stopping the drugs cold turkey, and I refused the drugs in the Hospital as usual, later to be sent to a kangaroo court and ordered by the judge to be on forced medicated – extremely high doses of Haldol and Cogentin. I was coerced and threatened and attacked by hospital attendants where they forced me down on my bed and injected me with several syringes of drugs at once. A sideways glance was all that it took.
This time the hospital staff was even more threatened by my intelligence and resourcefulness and would not discharge me unless I consented to forced treatment in my home for a few years. This was the newly implemented AOT program, or Assisted Outpatient Treatment plan. I was never violent or disrespectful but they said I was a danger for noncompliance. Plus they claimed, I cost the hospital too much money from repeated stays.
I was even more determined and quietly vowed that after this forced program ended, I would successfully and very cautiously, slowly and safely get off these toxic drugs once and for all. So I endured the treatment for two long years and got physically sicker and sicker. I gained tons of weight, had metabolic syndrome, couldn’t control my bowels and bladder, became suicidal, and lost a lot of my hair. I also began getting serious tremors and seizures.
A Healing Partnership
Meanwhile, I had been perusing through various websites about the psychiatric survivor movement and I chanced upon the Mad in America site. I liked what I read. There was a section on locating helpful doctors in your area and I came across a new name: Dr. Kelly Brogan. I checked out her website and saw that she was helping women get off their psych meds with diet and other non-harmful protocols. I was thrilled and contacted her immediately by email. That was in 2013.
She was very knowledgeable and told me she could help me, though I knew she mostly worked with antidepressants and not as much with antipsychotics. I was also in my mid-fifties and she looked so young. But she was aligned with my beliefs on diet and health. Plus I was very excited about her confidence and strong will to help. There was still the problem of being on court order to see a state appointed psychiatrist, whom I detested. So for a while I was seeing both doctors. Forced treatment was continuing and finally when I had my follow up with the AOT administrative doctor, I told her as calmly and as rationally as I could that AOT was never helpful for me and I wanted to see my own doctor who would prescribe the meds and work with diet and supplements as well.
The administrative AOT doctor coincidentally had gone to the same medical school as Dr. Brogan and knew her. Her ounce of compassion, and perhaps a recognition that AOT had failed me paid off, and I was “graduated” from AOT and began only seeing Dr. Brogan. There was also a social worker assigned to me that I kept on, even though I could have discontinued that as well. The social worker was quietly rooting for my success tapering off the drugs as she could see how I was improving as I got on lower and lower doses, and she was a good additional support for me.
Then, over two years of slow steady withdrawal under Dr. Brogan’s care and slowly reducing the drug using a compounding pharmacy, the taper went by without too much suffering and I was reducing the drug by 1% a month. I spent that time meditating as a direct way to truly understand myself, reading inspiring books, cooking healthy meals, taking some supplements regularly and resting a lot, because of chronic fatigue from the withdrawal.
In a recent meeting with Dr. Brogan, she asked me if I had experienced a transformation. Since I am not off the drug yet, I still have some residue of being shut down in certain areas, but I have been undergoing transformation for the last 15 years, when I first started reducing the drugs.
And transformation is not a “finding Jesus” moment or anything extraordinary. Rather I am finding out who I am. I spent the entire last year simplifying my life and cleaning and de-cluttering my living space. I am finding that simplicity is the key to a good life and happiness, and the more ordinary my life, the better. I am also finding beauty in many things I once took for granted. And I take refuge in solitude.
As I receive regular news of my dying father in his last stages of life and the crazy neurotic dance of my relatives running around like chickens with their heads cut off, I see that busyness is not the answer to understanding the profundity of life and death. Taking lots of time to sit alone watching my thoughts and being aware of the changing and impermanent nature of the world around me gives me a grounded security in groundlessness. I feel fearless from this understanding. There are moments of terror when I think about my father suffering and imminently dying, but I have also grown to have a deep compassion for him and everyone else, and I am now able to tell my father that I love him; I have forgiven him for all of the past inadvertent harm he has done me. All that is important in life now is love, and I will spend my time seeking it out. But as Sogyal Rinpoche says in The Tibetan Book of Living and Dying, “What we have to learn, in both meditation and in life, is to be free of attachment to the good experiences, and free of aversion to the negative ones.” I am not looking to stagnate in life anymore. I am looking to evolve and experience my life fully with whatever happens.