Coming Off Psychiatric Medications

Coming Off Psychiatric Medications
By Sharon Spieler
Some People in this Country Are Doing It
On January 25, 2015 Community Links sponsored a viewing of the documentary “Coming off Psych Drugs” produced and directed by Daniel Mackner, LCSW. In this film, 23 people came together for a training on how to get off psychiatric medication sensibly, gradually, and with hope and support. The people attending this training consisted of psychiatric survivors, family members, consumers, a social worker, and a therapist. Basically they were people who had already come off their psych meds, those in the process of coming off their psych meds and those thinking about coming off their psych meds as well as two professionals who believed it is possible to treat people with a psychiatric diagnosis with therapy rather than with medication.
The participants in the training actually felt they were coming to a “meeting of the minds” summit. They came for support, education, and comradery. They found what they were seeking.
So how does one actually come off psych meds? The first thing you have to do is find a psychiatrist or medical doctor willing to help safely wean you off the medication. The participants agreed that because of the medical establishment's ingrained belief that mental illness is caused by a chemical imbalance best treated with medication, it was practically impossible to find a clinician willing to do this. One girl had already found a clinician who helped her wean off her meds. When professional assistance fails, you can obtain a copy of the publication titled “Harm Reduction Guide to Coming off Psychiatric Drugs” by Will Hall and published by the Icarus Project (available online). One aspect of the training dealt with this publication. The key emphasis was on coming off the meds gradually.
So what happens when you come off your meds? People cope with “alternative wellness practices” such as meditation, healthy diet, getting enough sleep, pets, nature, peer support, journaling, exercise,  meaningful work, aromatherapy, hot baths, walking, fishing, creative writing, cooking, going to museums, hobbies, swimming, star and moon gazing, acupuncture, etc.
The film's producer/director Daniel Mackner, LCSW, an invited guest, said his motive for making the film was to educate the public about alternative ways of treating mental illness. He revealed that many of those in the medical establishment believed he was being irresponsible and he received occasional threats.
Many of the participants expressed skepticism about getting off their psych meds and for good reason. One woman pointed out that the entire mental health system in our country is built on the premise that mental illness is a chemical imbalance where medication is the only way to correct it and powerful drug companies profit from that belief.
A male participant raised the issue that if you try to get off your meds you could lose your benefits, to which Mr. Mackner replied that the trick is not to tell anyone that you are tapering off your meds. Someone said that for consumers who were not medication-compliant, psychiatrists prescribed injections instead. Mr. Mackner suggested that they should show their psychiatrist that they are trustworthy and start taking pills again. Once they are on pills, they can taper off without mentioning it to the doctor.
I had three bouts with major depression: once in the 1970s, once in the 1980s, and once in the 1990s. I would have suffered less had the doctor kept me on antidepressants. There is a danger in coming off of medication. Illness can reoccur. I do not think I would risk being off of medication again.
One person, a forensic peer-specialist, did not believe that those in charge of the prison system would approve of him telling prisoners that they can come off their psychiatric meds. Mr. Mackner said that the Los Angeles prison system is the biggest mental hospital in the country and that many people receive psych meds for the first time in prison.
Participants wanted to know what supports were out there once you got off your meds. We were merely referred to YouTube and Facebook. Lastly, someone wanted to know of anyone who had successfully weaned off their meds publicly. Mr. Mackner said that most people do not share publicly if they are off psych meds; they simply go on with their lives.

Pullout: “...someone wanted to know of anyone who had successfully weaned off their meds publicly. Mr. Mackner said that most people do not share publicly if they are off psych meds; they simply go on with their lives.”

The Gym Is My Salvation

The Gym Is My Salvation
By Ryan
Stabilizing Bipolar Disorder Through Fitness, Nutrition, Meds and Music
Some people would call it a “rant.” I call it an arch-nemesis. Yes, people sometimes can be crippled by their own condition. Only if you’re a fighter can you make it. I spent the earlier years of my life during my childhood as “cryin’ Ryan.”  That’s actually what my late grandfather used to call me as a child because I cried so much. Even as a two-year-old, I was moody. It could’ve been the bout of spinal meningitis that caused my bipolar I disorder, but it’s genetic.
Bipolar and unipolar depression run on both sides of my family. When I turned the tender age of ten, I found my behavior to be quite odd. I’d go on binges where I’d starve myself until I had a Catholic school teacher give me a Snickers bar. I would retreat into the mountains a lot, as I’m from California (though I live in Illinois). It has been a battle ever since I was diagnosed with bipolar-I with psychotic features. I’ve had fifteen to twenty hospitalizations and am fortunate to be on my mother’s health insurance.
As much as it troubled me as an adolescent, I was always active in sports—until I got into the later years of high school. My most memorable class was weight training. It just clicked with me. The working out and the walks, runs, sprints as a kid kept me athletic throughout my life. This is what has helped me stay in shape while being on 8-9 medications a day. I choose a sort of diet that’s healthy and take my anti-oxidants, knowing that the medication side effects on the long-term can take a toll.
Most of the time I would be battling with the illness and then go work out when I was able to drag myself to the gym. I also suffered from the effects of electro-convulsive therapy (ECT) for two years. Yes, it helped my severe depression, but ECT rampaged my memory, so my short-term is very bad, but my long-term is intact, thanks to the effects of Acetyl L-Carnitine. I only take a few supplements, just high amounts of anti-oxidants.
I’d say the biggest battle for me besides depression is education. I spent four years at a city college and was at a junior level status at the university since I moved. I’m doing my Bachelor of Arts next because I just got my Associates degree and need employment that is good enough to cover my medication, doctor visits, hospitalizations (if I have any more) and ongoing therapy to help me cope with day to day issues.
I’m 37 now and feel like a dinosaur trying to get mediocre jobs. I’m currently on disability and will be for the rest of my life, but I’ll still have my education behind me that no one can take away from me. Please, no more ECT. The lithium plus the other pills that I take for my illness help regulate my moods so that I don’t have the severity in mood swings. I have a few friends here in Illinois, but they’re living their lives which makes it difficult to get together with them.
I’d much like to consider myself a success story as I always strive to stay in shape by hitting the gym six days a week. I’ve contemplated bodybuilding, but would never put a steroid in me even though I’ve been lifting more on than off for the past twenty-plus years. I’m nowhere near where I’d like to be physically, but I’m getting closer to my goal. The family support I receive has been fantastic. My step-dad and mother are wonderful to me. So again, I’ll remain a success story no longer plagued with disease even though I’ll have it for the rest of my life. Thanks for listening. Be sure to visit my heavy metal website, http://www.secret-face.com/, to view my writing and guitar transcriptions.

Resilient Not Incompetent

Resilient Not Incompetent
By Pamela
Finally Knowing the Reason for My Distress
I think I always knew that I had a problem. When I was young I used to be afraid of everything. I stuck close to my parents and stayed home with my youngest brother Andrew who had cerebral palsy. While my other brother and sister went out and made friends, I was at home.
I hated school. I was bullied and didn't have friends until my senior year. I was a terrible student. I found things very confusing and took a long time to grasp concepts. I would stare off into space and zone out, missing entire portions of my class. I thought I had a learning disability or that something was wrong with my brain, but I just couldn't figure it out. I was afraid to talk on the telephone because of the people on the other end and what they thought about me. What they were saying about me were things that scared me.
It doesn't happen often, but sometimes while having a conversation with someone, I will be in mid-sentence and then I begin what I call “word salad” where I jumble up a bunch of nonsensical words that mean nothing. It’s embarrassing. I can hear myself saying it, but pretend I didn't do it.
I've attempted to go to school to change my career twelve different times, each time leaving for a different reason. My instructor was sabotaging me, I had chosen the wrong field to study, I wasn't smart enough, I didn't feel comfortable in my classes because the students were talking about me under their breath.
I've changed jobs about as many times as school. Left and came back four times at one job. At my last job prior to treatment, I worked with a small group of people who were as frightened of me as I was of them. I was manic and tried really hard to do a good job. I worked and spoke quickly, again speaking word salad, and could not understand why they weren't pleased with my hard work. One day I just fell apart, hallucinating and seeing blue dots all over the floor, ceiling and walls. I thought everyone at work was responsible. I left that job the same day and never returned. After talking to my priest, a criminal psychologist, about my experience, he gave me the name of a psychiatrist. This wasn't the first psychiatrist that I had been to, but the first to name my condition: schizoaffective disorder.
I began the challenge of finding the right medication to help my depression, mania, delusions, paranoia, hallucinations and anxiety. While waiting for relief, I became suicidal. I was at work and had the good sense to tell my supervisor, who took me to the emergency room where I was transferred to a hospital for behavioral health and substance abuse. I was there ten days while they played with my medication. For one week after being released, I had panic attacks every day, causing me to have fainting spells. I would pass out and end up in the emergency room. I thought I was going to get fired. I requested a change in shift from first to second shift, so I would not have to work with too many people.
After five years and two more psychiatrists, I finally have a mixture of medications that work for me. I read all the time about people wanting to get off their meds and take care of their mental illness without them, but for me medication is a necessity. I've needed medication for a long time, and without it I am not lucid.
Right now I'm taking my meds as I should. I know that down the line I'll probably have another break. I think it's inevitable. My symptoms seem to be cyclic and I don't know that I'm in trouble until I’m in the midst of it, when someone tells me something is wrong. I am grateful to be finally aware of my diagnosis. It is a relief to know that it was not my fault to have failed at the many things I've tried so hard to accomplish. For years I believed I was stupid and incompetent, when what I really am is resilient.

Editor-At-Large/As I See It: The Dangers of Lithium

Editor-At-Large/As I See It: The Dangers of Lithium

A Column by NYC Voices' Business Manager Marvin Spieler

Exercise Your Consumer's Right to Choose

After being on the medication Lithium Carbonate (Lithium) for twenty-one years, I became toxic. I knew potentially I could become toxic, but I was playing the odds. However, I lost in the end. Now I am on dialysis as a result, as Lithium ruined my kidneys.

The kidneys: we all have two of them, they filter our body’s blood to keep it clean. The kidneys excrete the waste products through the urine. Now as a result, I am with two kidneys that are almost useless. Dialysis acts as my artificial kidneys. Without dialysis, I would die. That’s the bottom line. Go on dialysis or die.

Here’s the problem that I now have as a result. I must go to a dialysis center three times a week. I spend approximately five hours each day there. Actually, three hours on the dialysis machine, and usually about two hours in transportation time to and from the center.

The result is that I waste three days of what used to be productive time doing other things. I used to be a mental health advocate. However, I had to drop my advocacy work. I can no longer attend meetings, go to conferences, or go on trips to Albany with NYAPRS members to keep legislators from cutting the mental health budget.

At first I became depressed over my new reality, but that has passed. I am used to my new lifestyle. I finally accepted the fact that I had to drop my mental health advocacy work. However, it is a great loss.

Why am I telling you all this? GET OFF LITHIUM NOW IF YOU TAKE THIS DRUG!! Fortunately for you, now there are substitutes like Depokote or Tegrotal that work just as well for most mental health consumers. Only in rare cases, a few consumers have no choice but to stay on Lithium. I tried Depokote and Tegrotal. Tegrotal is now my drug of choice. I am doing as well on Tegrotol as I was on Lithium. Like Lithium, I need periodic blood tests to see that the level is in balance, so that in itself isn’t new for me.

Again my advice to you is this. Seriously, have a discussion with your psychiatrist. See what he says. Listen to his point of view. But in the end you have “the right” to determine what meds you take and don’t take. That is a right you have. Use your judgment. Mental illness doesn’t kill your right to think or choose. Use your brain to control your health.

When I went on Lithium there wasn’t much else to control my moods. It worked. I had twenty-one glorious years of continuous freedom from psych wards on Lithium. I built a life for myself. I made long-term friends, met a wonderful woman and married her. We decided on no children as we both had mental illness and didn’t want to potentially pass it onto our children. That is my only regret. Children would possibly have been a blessing, but that was our choice back then. Medications were crude and usually not very effective. We didn’t and couldn’t anticipate a modern second generation on psychiatric meds. So my advice is get married and have kids if you desire to. However, be ready for the turmoil your kid or children may have initially with mental illness. Mental illness is like no other illness I know of.

By the way, I am proud to say I am hospital-free for over thirty years now, a record I am proud of. This is one of my major accomplishments in life. To be free of the goons in psych hospitals is a real joy. To no longer worry about a hospitalization as long as I take my meds daily, I do thank medical research and modern drug production.

How Long Have You Been On Meds?

To be blunt, the drug companies in this country have pushed their products to the point of being the totally acceptable panacea to help the mentally ill. It is my understanding that in Europe, medications are used as a last resort.

Also, drug company representatives, meaning salesmen and psychiatrists who represent drug companies, have brain-washed most of our American psychiatrists. We consumers, as a result, have been practically forced to take meds for life. It is my assumption that after “x” number of years on medication, it is almost impossible to get off meds on our own.

Most psychiatrists swear never to take you off meds. That is what they are probably taught. Otherwise, why is it so hard to find a psychiatrist who will help get you off? In the end, we ourselves begin to believe the common line of thought about staying on them.

After a lifetime of medication, my concentration and memory are shot. As a result, I haven’t been able to read a book in years. I guess I must be thankful not to be hospitalized for years on end. Thank you, drug industry. HAH!!