Millions of people believe that psychiatric medications have saved their lives, while millions of others report that their psychiatric medications were unhelpful or made things worse. All this can result in mutual disrespect for different choices. I can think of no better antidote for this polarization than the recently revised, second edition Harm Reduction Guide to Coming Off Psychiatric Drugs. This 52-page guide, published by the Icarus Project and Freedom Center, is now available FREE ONLINE in English as well as in Spanish, German, and Greek.
Harm reduction is pragmatic and recognizes that there is no single solution for every person. Instead, as the guide states, “Harm reduction accepts where people are at and educates them to make informed choices and calculated trade-offs that reduce risk and increase wellness.” Harm reduction is about providing information, options, resources and support so that people can make choices that fit their situation and who they are.
I wish the Harm Reduction Guide to Coming Off Psychiatric Drugs had been in existence for my entire career as a clinical psychologist. It would have been especially helpful for one particular couple whom I saw several years ago for marital counseling. Cathy and Jim (not their real names) met during their psychiatric hospitalization, both having been diagnosed with serious psychiatric illnesses. After their hospitalization, they dated, moved in together, and married.
Cathy told me, “Jim is an intellectual, smarter than anyone I have ever met in my life”; to which Jim blushed and responded, “Bruce, sometimes it’s good to have a wife who is a little delusional.” Jim then told me that “Cathy is the most beautiful woman in the world”; to which Cathy laughed and said, “Sometimes I worry that Jim is hallucinating about another woman.”
After a year of marriage, their marital bliss began to erode over the issue of psychiatric medications. One day, Jim quit taking his antipsychotic Zyprexa. Cathy, who continued to take her antipsychotic Risperdal, was worried that Jim, without Zyprexa, would become agitated, do something “crazy,” and would be forced to return to the hospital. Jim said, “Even if Cathy is right that I am increasing my chances of going nuts again—and I don’t know that she is right here—the reality is that with Zyprexa I can’t take a decent crap and I can’t concentrate when I read, and books—besides Cathy—are the most important thing in the world to me.” And then Jim added that he was worried about the short-term and long-term adverse effects of Risperdal on Cathy, and that he wished she would stop taking it.
Ultimately, and quite beautifully, both Cathy and Jim came to see that risk in life was unavoidable, and they learned to respect each other’s choices and risks with respect to psychiatric medications. Both would have appreciated the Harm Reduction Guide to Coming Off Psychiatric Drugs, which is all about informed choice that allows one to take the risks that make most sense given one’s situation.
Will Hall, the primary author of the guide, is a former psychiatric patient and is passionate about informed choice when it comes to psychiatric medications. Hall, no anti-drug ideologue, begins by pointing out that in U.S. society there are confusing messages about drugs, and this results in a great deal of fear:
Drugs become demons or angels. We need to stay on them at all costs, or get off them at all costs. We look only at the risks, or we’re too frightened to look at the risks at all. There is no compromise: it’s black and white, all or nothing. It’s easy to fall into absolutist thinking when it comes to psychiatric drugs. Pro-drug advocates focus on the risks of extreme emotional states, while anti-drug advocates focus on the risks of taking drugs. But it is the belief of this guide, and the philosophy of our pro-choice work at the Freedom Center and the Icarus Project, that either-or thinking around drugs is a big part of the problem.
Hall’s serious emotional suffering included “multiple suicide attempts, hearing persecutory voices, extreme mistrust, bizarre experiences, hiding alone in my apartment, unable to take care of myself.” The psychotherapy that he received hadn’t worked, and no one provided him with any other options besides medication. Hall writes, “I was under pressure to see my problems as ‘biologically based’ and ‘needing’ medication, instead of looking at medication as one option among many.”
After spending a great deal of time in hospitals, residential facilities, and homeless shelters (where he lived for nearly a year), Hall began to believe that so-called “expert authorities” had failed him and started his own investigating, “I started judging my options more carefully.” That process led Hall to co-found, along with Oryx Cohen, the Freedom Center, a support community in Western Massachusetts that brings together people asking similar questions. From all of this came the Harm Reduction Guide to Coming Off Psychiatric Drugs.
For Hall, “This is a guide I wish I had when I was taking psychiatric drugs. Prozac helped me for a while, then made me manic and suicidal. I was sick for days after coming off Zoloft, with counselors telling me I was faking it. Nurses who drew blood samples for my lithium levels never explained it was to check for drug toxicity, and I was told the Navane and other antipsychotics I took to calm my wild mental states were necessary because of faulty brain chemistry.” Hall used many different psychiatric drugs over several years but, he tells us, “the medical professionals who prescribed them never made me feel empowered or informed. They didn’t explain how the drugs work, honestly discuss the risks involved, offer alternatives, or help me withdraw when I wanted to stop taking them.” Hall wrote this guide because, “Information I needed was missing, incomplete, or inaccurate.”
“Making harm reduction decisions,” says Hall, “means looking honestly at all sides of the equation: how drugs might help a life that feels out of control, how risky those same drugs might be, and the role of options and alternatives. Any decisions involve a process of experimentation and learning, including learning from your own mistakes and changing your goals along the way.”
Below are titles of several of the short chapters offered in the Harm Reduction Guide to Coming Off Psychiatric Drugs:
Why Do People Find Psychiatric Drugs Helpful?
How Do Psychiatric Drugs Work?
Do Psychiatric Drugs Correct Your Chemistry?
Who’s To Blame? Yourself? Your Biology? Neither?
How Do Psychiatric Drugs Affect the Brain?
Facts You May Not Know About Psychiatric Drugs
Health Risks of Psychiatric Drugs
How Withdrawal Affects Your Brain and Body
Why Do People Want To Stop Using Psychiatric Drugs?
How Difficult Is Coming Off Psychiatric Drugs?
Staying On Medications and Harm Reduction
Intermittent Use: Taking Psychiatric Drugs From Time To Time
What are the Alternatives to Using Psychiatric Drugs?
Coming Off: Step by Step
In the sometimes silly, routinely hypocritical, and often disrespectful psychiatric drug debate, the Harm Reduction Guide to Coming Off Psychiatric Drugs is an oasis of wisdom and compassion. And the fact that Will Hall, the Icarus Project, and Freedom Center are providing the guide free is an antidote to cynicism—yes, there are some people who are actually more passionate about helping emotional sufferers than making a buck off of them.
Bruce E. Levine, a practicing clinical psychologist, writes and speaks about how society, culture, politics and psychology intersect. His latest book is Get Up, Stand Up: Uniting Populists, Energizing the Defeated, and Battling the Corporate Elite. His Web site is www.brucelevine.net
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
Thanks for sharing information on this book. The title jives with what most physicians should strive for: the variation of the “do no harm” ethical principle attributed to Hippocrates, which really is “do as little harm as possible”. Do you know what is recommended in this book is similar to other strategies that have been relayed in this to getting off medication?
You could read it yourself, Stevie. It would do you good.
Harm reduction is mode of interacting/engaging often found in non-physician led community health organizations (though not exclusive). It’s origins were to provide an alternative to addiction->abstinence->relapse models of substance addiction treatments that a lot of people felt judged in (by themselves, by a higher power, by clinicians, by other patients/clients, etc.) or worthless/hopeless if they relapsed or had hopes of living life not seeing themselves as always addicted, abstaining, or using. This led and still leads many folks who don’t do well in that paradigm to lose hope and stop trying to make any change that they hoped to make in the first place. Harm reduction approaches, on the other hand, allows people to make decisions about their own behavior and the risks they were willing to take, learn about the risks of doing or doing certain things, and get support in living a way that works the best for people at a particular time while always allowing an option for change in the future.
Principles are applied by needle exchange programs to reducing individual and community health risks (HIV/Hepatitis B transmission, skin infections, thousands and thousands of needles not properly disposed, etc.) as well as avoid unhelpful punitive legal intervention for folks using and/or wanting to stop using injected drugs. Condom distribution/education is also considered harm reduction.
I’m sure many physicians have employed harm reduction principles in regards to addiction/withdrawal issues for both illicit and prescription drugs of all kinds. They have done it because it is often very helpful, is led by the decisions of the person wanting to reduce some level of harm/risk to their own experience, and because of that, can actually be collaborative/non-coercive/non-judgmental.
This resource is great because it is free, comes with a bunch resources one does not usually find when working with a doctor, and actually does a good job of laying out what risks are for all sorts of choices related to psychiatric drug use and all sorts of ways to mitigate some of the harm those choices might have.
Os “do no harm” really “do as little harm as possible?” As I think more about it, “do no harm” and the Hippocratic does “jive” well with harm reduction, more than many approaches that risk patient safety, stability, sanity, dignity, etc, and I’m surprised than that it is not strongly embraced by Medicine (my guess is because it is lay-led and non-directive). To me, harm reduction is a way to engage with situation that is already having undesirable/risky/harmful effects in a way that reduces/mitigates some of that risk/harm in a way that doesn’t risk more and in a way a person in that situation is willing to engage with full access to needed information and full control/responsibility of the decision-making process. I think that fits as “help, or at least do no harm,” not “do as little harm as possible [even if trying to help.]”
The focus is not on the harms associated with the intervention of a clinician/doctor/outreach worker/helper of any kind, but on recognizing how a situation that is already risky/harmful/unstable can be made less so by a person in that situation, and how others who may be interested in helping can support them in reducing some of that risk/harm.
Nathan, I think another issue is what you call “harm.”
There are doctors who believe the sexual dysfunction caused by psychiatric drugs is a trivial side effect.
They will gladly sacrifice a patient’s sex life for some therapeutic benefit that never emerges anyway.
Medication-induced insomnia? No problem. Here, I’ll write you another prescription (and forget to tell you it’s addictive).
What you and I might think are substantial risks mean nothing to doctors. Here’s an area where a dialog is very badly needed.
“Medication-induced insomnia? No problem. Here, I’ll write you another prescription (and forget to tell you it’s addictive). ”
Define “addictive” in your belief system Altostrata.
What do you believe “addiction” is?
It’s a good guide. And there is a conversation happening on this very topic in the madinamerica.com forums.
I’m glad I’m no longer on psychiatric drugs. I used to be, that was a choice my government and the people who choose to work in forced psychiatry stole from me, and it is very important for those of you have had that choice ripped away from you, to consider carefully whether you ever would have taken these drugs had you been given informed consent.
If your government coercion has died down, who knows, maybe you’re lucky enough to own your body this year and not currently be a government slave, maybe it is time to reassess for yourself anew, the pros and cons, of these drugs.
One thing can be said for certain, while there may be a harm reduction approach to coming off psychiatric drugs, there will never be a way to reduce the harm done to so many people by the brutality and cruelty of forced drugging.
First and foremost, every *adult* should be allowed to make their own decisions.
The problem, of course is that making a *decision* is not necessarily making an *informed* decision.
For instance, if someone is told they have a *strong possibility* of *decompensation* if the do *not* stay on their drugs; or if they are told that their *brain disease* will *deteriorate* if they do not stay on their meds, they are being *mis-informed*!
Dr. Peter Breggin describes how the use of neuroleptics causes grave injury to the temporal region of the brain – the part of the brain that makes us fully human – our highest thoughts, or deepest emotions, or socialization… In my opinion, our (secular) soul.
Should people be *informed* of this?
I think so.
Should we also have empathy for those folks who choose not to withdrawal (due to the pain, the lack of support)… those who were forced to take the, who are now chemically-dependent or addicted, who are afraid to try to come off them?
I certainly hope so.
Should we begin to work for justice, to DEMAND that those docs who created this nightmare are held accountable?
Nobody should be forced to get on these drugs.
Or coerced to get off of them.
We need more resources in this country.
More support, to include psychiatric drug withdrawal centers.
And we need to get a federal law passed that stops forced treatment, once and for all.
Any doctor who forces someone to take a neuroleptic, without due process of law, should be in prison.
Call me a radical.
“Or coerced to get off of them.”
You need to read the forums, a very interesting story/dilemma has come up there about a father and son.
Thank you for letting us know.
I have no good word to say about psychiatric medication. My mother was prescribed Ativan when my father died unexpectedly. No matter how hard she tried to get off it, she just couldn’t. She was told by the doctors to just stop taking it if she didn’t need it: it turned her into a jibbering wreck although she had been only on it for a couple of months. It turned her life as well as mine into a nightmare. My son developed NMS on olanzapine and doctors did not recognise it. He nearly died. After a breakdown at university because she was overdoing it, my niece was put on clozapine. She turned violent on this drug and nearly killed her mother with a knife. So no, I would NEVER advise anyone to solve their emotional problems with psychiatric drugs. Keep of them if you can! If you have been put on them be ever so careful when coming off them. It can drive you to suicide: my son nearly did when coming off olanzapine.
I love this. I also do not think the issue with medications are completely black and white. Sometimes the drugs allow people to find their feet if used short term. Others genuinely feel their lives have been made better with the drugs. We need to respect those experiences as well. Hopefully the doctors prescribe the lowest effective dose to those folks – full well knowing that the medications are also toxic. Hopefully people are informed of the toxicity. We know they are not currently informed though, and that is one thing we MUST change.
For millions the drugs and the demeaning attitudes we met in psychiatric units were horrific and traumatizing. My own experience was one of “being kicked while I was down”. I wish I could find every single person who did the kicking and hold them responsible. I can’t of course.
About tapering, starting on page 35 of the 2012 second edition of the Harm Reduction Guide:
Coming Off: Step by Step
Reducing Drug Dosage Safely
The following are general considerations, and no single pattern fits everyone:
– Usually it is best to go slow and taper gradually. Though some people are able to successfully go off quickly or all at once, withdrawing from psychiatric drugs abruptly can trigger dangerous withdrawal effects, including seizures and psychosis. As a general principle, the longer you were on the drug, the longer you may need to take going off of it. Some people take years to come off successfully.
Dr. Peter Breggin says the experience can be “emotionally life threatening.”
I cringe at the slightest mention of some people getting off quickly… Cold-turkey withdrawal is dangerous.
I went off the drugs cold turkey without any problems. Lets not be completely black and white in our approach.
Malene, you were taking a very serious risk by going cold turkey. You rolled the dice, and it came up a winner for you. For your sake, I’m glad about that.
Let me explain again why going cold turkey is not a good idea under any circumstances: You cannot know in advance how the gamble will turn out for you.
Once you get withdrawal symptoms, your nervous system is damaged. Even people who get over the symptoms in a couple of weeks often say it was the worst experience of their lives.
If you get severe withdrawal syndrome, it can take you years to recover. You might end up okay, but you’ll never be as good as new again.
You will be suffering greatly much of the time you are recovering. People sometimes kill themselves, the anguish is so great.
It’s cold turkey that’s “black and white” — one day you’re taking the drug, the next day, not.
If you get severe withdrawal symptoms and you know what’s going on, you may realize you need to get back on the drug right away and taper off.
If you don’t know what’s going on, you believe those symptoms mean you need to be on the drugs for life.
Or, you may think you’re going to “bull it through” and wait for the symptoms to go away. Months later, you’re still waiting, and getting sicker.
Now, to me, sliding off the drugs gradually is shades of gray. You can do it the way your body tells you to. You may be able to tolerate a fast taper, or you might find you need to taper very, very slowly. People vary in this.
One thing they do not vary in, though — if you go cold turkey, you’re gambling with the health of your nervous system.
Until you experience the damage, you have no idea how awful it can be. Your nervous system runs every function in your body.
How would you, for instance, like to lose the ability to sleep? That’s for years, not days. (That happened to me. I’ve been recovering from Paxil withdrawal syndrome for 8 years.)
If you’re interested, you can read hundreds of case histories here http://tinyurl.com/3o4k3j5
Withdrawal syndrome is not a myth. It is not trivial and does not always last only a few weeks. That is a lie coming from pharmapsychiatry. Any withdrawal symptoms at all represent neurological damage.
Cautioning people to go off the drugs gradually is not a plot to keep them on the drugs. It’s a way to go off them safely and get away from the clutches of psychiatric treatment.
“Once you get withdrawal symptoms, your nervous system is damaged. ”
I see. And the name of the doctor who proved your nervous system is damaged? and the tests he carried out to prove it?
Are people who go trough smoking withdrawal or alchohol or coffee withdrawal, are their nervous systems “damaged” as well?
And that the damage occurred at the time you say it did?
“How would you, for instance, like to lose the ability to sleep? That’s for years, not days. (That happened to me.”
People die after a few months without sleep even if they have fatal insomnia disease. And unless you have a real disease, the longest anyone has been able to stay awake is like 18 days.
“Any withdrawal symptoms at all represent neurological damage.”
I’ll remember that next time around someone who is moody from quitting smoking. I’ll be sure to tell them it is just the “neurological damage” talking.
Sure, bodies adjust when a drug is pulled, but to go around with the certainty that you do, about what is allegedly damaged/happening inside your nervous system, isn’t scientific.
“Even people who get over the symptoms in a couple of weeks”
Are those people (millions of them exist, and millions more had no great problems stopping at all), are they “neurologically damaged”?
There is always much more to the story than mere “luck”, and SPECULATIONS about “neurological damage”.
Many people have a hard time adjusting to life without all sorts of substances they have habitually used. It is a more complex story than what is often told on various “SSRI withdrawal syndrome” websites.
For me it depended on how long I was on the drugs.
If I was only on them for a few weeks (forced in the hospital), I could go cold turkey and be all right. I did that a bunch of times and was fine for years at a time.
But once I started being forced onto them for longer periods of time (2+ months), I couldn’t come off like that – terrible panic, sleep problems, and more, to the point where I thought I was going to die. Also, I was suffering the effects of trauma from violent hospitalizations.
As they say, the longer you’ve been on them, the more your body has adapted and the harder it is to stop them. Mix that in with the trauma of what’s happened to you, and it’s a difficult situation.
Now, after being forced to stay on them for 5-6 years, I’ve been slowly tapering because I do definitely get withdrawal symptoms, even from that. It usually takes around a week for the withdrawal symptoms to abate (e.g. for my sleep to return to normal), and I am left feeling more functional due to the lower dosage, and then I wait another 2 or more weeks to make sure I feel solid going into the next reduction.
Plus, if you’ve been drugged for a very long time, you’re not used to dealing with your own strong emotions. So I think it’s good to go slowly enough that you can get comfortable with the “real you” bit by bit. In my case I’ve also been able to deal more with being traumatized, too, and basic issues like self-esteem and identity.
When I tried to cold turkey the past few years, I was thrown into a state of chaos. So others around me said I was “sick” again, basically.
This may be different for others, and also based on what type of drugs they’re taking.
Benzo – within a week or two I had terrible anxiety, that lasted 1-2 weeks then went away. And this is with clonazepam decreases of 1/4 of a 0.5 mg pill.
Seroquel – feeling more emotional (to the point of being overwrought), insomnia, faster thoughts, dilated pupils and tachycardia (120 beats/min). Usually have to take OTC sleep aid for a few days. And this is with decreases of only 12.5 mg.
This is a very reasonable and rational comment.
As are other people’s stories. People need to find what works for them.
Does anyone know if the ‘Get Kids Off Medicine Program’ at LSU is still up-and-running?
If so, could it be added to the ‘Resources’ section on MiA? –
This would be valuable for parents on this site.
I called LSU today. They said the program is n o longer operating.