For the last month or so, Mad in America has been hard at work building a directory of “mental health” providers across North America (and eventually, we hope, the world) who will work with people wanting to come off psychotropic drugs. So far, we’ve connected with traditional doctors, osteopaths, naturopaths, psychologists, social workers, counselors, and alternative/holistic practitioners and healers who do this work in varying ways — some have prescribing capacities and some don’t; some do the actual tapering, while others provide psychotherapy; some offer nutritional or supplemental support; others, Reiki and acupuncture.
I’ve been honored to have been tasked with the responsibility of building this directory, and I have to say, it’s been inspiring to talk to people all over the country who do this work, and who “get it”. Closer to the launch date, which we anticipate will be in the next few weeks, I’ll write up more about this project, and thank those who’ve played such a significant part in making it happen. In the meantime, I’ve been itching to write a bit about my own “coming off” journey. While it’s on my mind every day, I’ve been thinking more about it recently, given my work on the directory and the recent release of Daniel Mackler’s new film, “Coming off Psych Drugs: A Meeting of the Minds”. I woke up this morning and my fingers were itching. I knew it was time to write.
In September 2010, I came off the last of my “med regimen”— lithium, Lamictal, Abilify, Effexor, Ativan, and a PRN of Seroquel— and I said goodbye to a life of orange pill bottles and phone calls to CVS pharmacy, of dosage increases and new scripts to be filled, of the floral pill bag that shook like a maraca, and of the complete and total dependency on inanimate chemical capsules to define what I felt, how I thought, and who I was. After over ten years on psychotropic drugs, it had been an agonizing five months of tapering— I realize today that my psychopharmacologist likely had no idea what he was doing— and I would continue on for the next year and a half in the midst of daily physical, emotional, mental, and spiritual pain [for more on this, see my Madness Radio interview]. In the midst of this suffering, however, I was able to put my head on the pillow at night knowing that these pills were out of me. Gone, never to enter my bloodstream again. A decade of daily psychotropic drugs had circulated through my veins, seeping into my organs, my brain, my hair, my skin, my nails. A decade of daily psychotropic drugs had successfully disconnected me from a sense of self, physical health, emotional balance, and social connectedness. A decade of daily psychotropic drugs had nearly succeeded in killing the last scraps of my human spirit, and me, along with it.
On that brisk fall day over two and a half years ago, against the wishes of my “treaters”, and in the midst of hell on earth, I reclaimed myself. My Self. By no means has a second of it been easy, but it’s certainly been the best decision I’ve ever made in my life.
As time’s gone on, particularly in the second and third years of my post-psychiatry life, I have slowly but surely healed from the trauma of my psychiatric “treatment”. It’s been a long road, fraught with physical pain, unparalleled emotional upheaval, gut-wrenching anxiety, and paralyzing fear. In the midst of my worst moments— whether it was the hours upon hours spent lying frozen in fetal position on the sofa, staring blankly at the wall, disconnected from the world; or wondering if I’d ever be able to hold down a job, a relationship, or even the daily task of showering and changing out of sweats; or looking at healthy people functioning in the world around me and feeling baffled by how the hell they could possibly be doing it; or wanting to rip my skin off from the debilitating anxiety, and shut my head down to silence the endless chatter; or crying when I didn’t want to cry, and laughing when I didn’t want to laugh; or feeling like the only alien on planet Earth— I clung on to the one and only reason why I’d started my journey off of psychiatric drugs in the first place, my life preserver, keeping me afloat: I was determined to find myself, the Self I’d lost as a fourteen-year old to a “Bipolar” label, and a life sentence of polypharmacy. This spark of fire, however small it might have been in the beginning, outweighed all the pain, and allowed me to keep trudging forward. I was absolutely, 100% determined to find myself, no matter what the cost.
As a person who’s found liberation from psychiatry, I have learned that the least fruitful path to follow— for me, at least— is one of self-victimization. I served a long sentence that began early in my life and came with the shackles of numerous psychiatric labels and at least nineteen psychotropic drugs. I could say that I had my life taken away from me by Psychiatry, but I simply don’t believe that anymore, for only in finding peace with that chapter of my life’s story, and acceptance of all the suffering, the isolation, the hopelessness, the desperation, the self-sabotage, the self-destruction and the nine years of daily thoughts of suicide, can I say that I’m truly free. I decided about a year into my post-psychiatry life that continuing to think of myself as a victim would mean keeping myself dependent on Psychiatry, locking myself up behind its bars as an emotional slave. I turned my deep-seated resentment and rage at Psychiatry into passionate and productively channeled anger, and suddenly, I took off, shooting forward into a new life that continues to unfold in truly amazing ways now that I’m no longer held back by those toxic emotions, and, of course, the toxic psychotropic drugs.
As I’ve written before, and however backwards it might sound, today, I am grateful to those doctors, even to the first psychiatrist who threw me on Depakote and Prozac as a young teenager. I’m grateful to the locked wards and the internalized oppression and the security-blanket dependency on my “meds” and their numbing and disconnecting effects, because all of it has allowed me to become who I am today: a thirty-year old woman with a life ahead of her, who feels the full spectrum of human feelings and an authentic sense of self and purpose. Had I never found Anatomy of an Epidemic, had I never felt that tiny spark of fire in my belly that told me to take my life back and stand up against my seven-person “treatment team” when they disagreed with my desire to come off psych drugs, and had I never been determined with every ounce of my being to move through all the pain that came along with it, not only would I not have this exciting life ahead of me, but I wouldn’t be alive at all. I know this to be true.
I do not pretend to have expertise on the topic of coming off psychiatric drugs. Nor do I believe there is one right way to successfully do it. What I lay claim to is my own experience, my own lessons learned from constructive choices and destructive ones, and from the intuition I’ve only recently begun to tap into since healing from the trauma of “treatment”. What never ceases to amaze me is how vast the experiences are when it comes to coming off psych drugs— I’ve heard stories about successful cold turkey withdrawal with no symptoms, and ones about unsuccessful slow tapers. I’ve heard stories of those who’ve successfully come off in months, and others who did it in years. I’ve heard of people who found tremendous benefit from supplements, and others who never took a single dose of one and succeeded anyways. I know some people who’ve thrived from strict nutritional protocols, and others who couldn’t care less about cutting out certain foods. Exercise, no exercise. Yoga, no yoga. Meditation, no meditation. I know people who were on psych drugs for many, many years, and have successfully come off, and others who went on for a year or less, and struggle tremendously with the withdrawal. There is simply no one way to come off psychiatric drugs, and no one withdrawal trajectory.
While I certainly agree that the thousands of anecdotal stories out there suggest that a person’s odds of success are increased greatly by slowly tapering off, that doesn’t mean it’s the only way. It wasn’t, for me. I came off of five psychotropic drugs in five months; many would say that this is much too fast of a taper, or even not a taper at all. A wise woman, active in the Psychiatric Survivor movement, once shared with me that tapering off psych drugs very quickly, or stopping them cold turkey, is like Russian roulette— you just don’t know what’s next in the chamber. Maybe I would have experienced withdrawal for a shorter amount of time, or with lesser intensity, had my doctor brought me off in a year instead of five months. Maybe had I been ten years older, I would have struggled more. All I can say is that my journey went the way it did, and here I am today. I know what’s worked for me, but what’s worked for me might not work for someone else. No one told me to do all these things; I simply tested it all out, often times accidentally, and bumbled around until I found my path. I established my own threshold for pain; what I can bear, someone else can’t, and vice versa. I’ve heard many say that when it comes to the world of self-help, it’s important to “take what you want, and leave the rest.” That’s been a helpful motto for me to live by, especially as it relates to the topic of coming off psych drugs.
There are many of us out there who work incredibly hard to support people who are coming off of psychotropic drugs. Among us are psychiatric survivors, medical doctors, psychologists, social workers, counselors, holistic/alternative practitioners, and family members. You can find us in coffee shops, online forums, facilities, clinics, private offices, via Skype, on the phone, or holding banners at protests and yelling in the megaphone. Each of us brings a particular nugget of wisdom, inherently subjective, and not for everyone. There are books, articles, forums, chat rooms, websites, and presentations devoted to the topic of psychiatric drugs and how to come off of them. Each is simply one way to do it.
When I began the process of tapering off of psychotropic drugs, I had none of these resources. Sure, I had that huge “treatment team” who met about me on a regular basis and worked hard to ensure I relied on them to “manage” my life, but other than one social worker, a wonderful man whom I’ll never forget and always be grateful to, I felt zero emotional support from the “mental health” system as I came off. In fact, from looking at my medical records at that time, it appears that my psychotherapist didn’t even realize that my psychopharmacologist was managing my taper, because she reported that I was “non-compliant” and came off my “meds” against medical advice. But I digress… My psychopharmacologist had agreed to bring me off four of the five psychiatric drugs (not Lamictal, which he claimed had been proven effective for “Borderline personality disorder” and thus I needed to stay on it), and this was only because the “team” had decided I’d been “misdiagnosed” Bipolar and really, was just an alcoholic and a Borderline! How interesting! I met with that doctor once a month as he decreased the four drugs, and I came off the fifth on my own, without having read a single paragraph on how to taper off. Never once did I connect with a provider about the pain I was going through; I used my psychopharmacologist to taper me off, and nothing more. This was my experience: not right, not wrong, just mine. There are certainly providers out there— many of whom will be in our directory— who practice in entirely different, humanistic ways, and who are true supports for people coming off. I just simply never crossed paths with one during my time in the “mental health” system.
The bulk of my support came from family, and from the sober community I was very active in at the time. Having a space in which I could express my pain every day, and listen to others do the same, even if their pain wasn’t necessarily connected to psychiatric drug withdrawal, was incredibly beneficial to me, and I believe I wouldn’t have made it through without that support. In part, I bumbled through the first six months or so believing that the excruciating pain I felt was “early sobriety” from alcohol; I had no idea until many months in that it was less my body healing from alcohol and more my body’s desperate attempt to heal itself from all those years of damaging psychotropic drugs. At the end of the day, though, that community worked for me because while the drug was different, the emotional pain was the same. I was also lucky enough to be living with extended family, to have no job (other than being a professional patient, a career I became quite good at!), and to not have the worries of rent, children, or paying the bills. In short, I was incredibly lucky, and incredibly privileged, to be so taken care of. I look back on this today and feel gratitude from the bottom of my heart.
While I was able to withdraw in large part because of the reasons mentioned above— unconditional love, a de-stressed environment, and a space of mutual support, among many things— in truth, my success was not because of how quickly or slowly I tapered, the order in which I came off the drugs, my nutrition (or lack thereof), my exercise (or lack thereof), my sleep (or lack thereof), or the people from whom I sought support. There was something much deeper I had to search for first, something I couldn’t find in an office or on the internet or in a textbook or in a church basement or in the words or wisdom of another person. For me, what helped me successfully come off of over a decade of polypharmacy was the Why. Why do I want to come off psychiatric drugs? What did it mean to me? What was it that I was searching for? After I connected to this deep sense of meaning in the “coming off” process, those factors mentioned above— in other words, the How of the withdrawal—carried me through, and brought me slowly back to health. Discovering why I wanted to come off psych drugs was like putting the key in my ignition and turning it on; the method and the means by which I did it the steering wheel, accelerator, and brake. Had I not found that key, the process would have been mindless and empty, only about tapering, measuring, calculating, adjusting, so on and so forth. Likely, I wouldn’t have been able to continue, had that been the case. When I really connected to the Why of it, I could face the suffering that followed. As I say often to others, in my experience of coming off psychotropic drugs, the only way out was through.
While I’m really just scratching the surface here with all I could say about my experience of coming off psychiatric drugs, I’ll leave you with what I believe, in my experience, are the key components to a successful withdrawal. You can take what you want, and leave the rest:
- While it’s important to be well-informed about psychiatric drug withdrawal, too much knowledge— and too much fear— can create a self-fulfilling prophecy. I bumbled through my withdrawal with little to no knowledge of what was ahead, and I actually believe that this helped me tremendously. I didn’t obsessively read up on withdrawal and fill myself with fear about all the horrible things that could happen to me, and thus, I didn’t set myself up for defeat. I think there’s a fine balance here between knowing too little, and too much, and it’s a line that each person has to decide for him/herself.
- There are no universal experts on psychiatric drug withdrawal, because each person’s journey is so different. While it can be really informative and helpful to learn from others who’ve been through this process before you, and there are people out there doing very good and determined work to bring people off psych drugs, you are the only expert on yourself and your experience of the world.
- The mind plays tricks on you. On a regular basis, my mind wanted me to give up, to wave the white flag of surrender. In those moments, I reconnected myself to my sense of purpose— to that determination to find out who I was off of psych drugs— and I did my best to coexist with my thoughts, anxiety, and fear without letting them take me over. It was in times like these that I did my best to reach out to a friend or family member for support.
- Take the time to understand how your body is impacted by nutrition. I was never a believer in the power of nutrition, and this has been a profoundly beneficial discovery for me. Cutting gluten out of my diet, however hard it initially was, has done wonders for my mind and body; cutting out processed sugars and processed foods in general, except for the occasional splurge of course, has proven just as helpful.
- Remove whatever stressors you have control over, to create as de-stressed an environment as possible. For me, this meant staying free from “illicit” drugs and alcohol, from unhealthy or traumatizing relationships, and from responsibilities that I wasn’t required to take on. My body was (and often times still is) incredibly sensitive to the environment I’m in, and thus, managing whatever I did have control over was important for me.
- Listen to your body, however hard that may be. Psych drugs disconnected me from my body and desensitized me in so many ways, so this was certainly a difficult process for me. I know today that my body is always communicating with me, if I just take the time to feel what it’s saying.
- Surround yourself with unconditional support, whether that means family, friends, providers, healers, or some other type of supportive community. I’ve learned that no matter how isolating or painful the journey may be, you never have to be alone.
- When you’re losing hope in yourself, and feeling yourself sinking in the quicksand of withdrawal, place your faith for the time being in those who’ve walked the path before you. There were so many times when I wondered if I could keep going, when any faith left in myself was so pushed down that I could no longer feel it. On those days, I thought about others who’d walked the same path before me, feeling the same pain and the same fear, and who were no longer mired in the suffering anymore. Faith in them was my way of having faith in myself.
- More than anything, connect to the meaning behind why you are coming off psychiatric drugs. This is the seed from which everything grew for me— both the thorns and the blossoming buds.
I could keep going, and going, and going. For your sake, I’ll stop here, and leave you with a quote from Viktor Frankl’s Man’s Search for Meaning, a book that was instrumental to me as I came off of psychotropic drugs. It sums up everything I’ve said here, in one beautiful sentence.
Everything can be taken from a man but one thing: the last of human freedoms – to choose one’s attitude in any given set of circumstances, to choose one’s own way.
Indeed, we’re all in this together, and in the midst of the often tremendous suffering lies freedom.
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.
🙂 Ten thumbs up!!!
Thanks, Jonah 🙂
I do believe that some people have to figure out where they need to think for themselves. I was told so many times that it was me not the drugs and I was not sure what to believe when the psych docs said this. I was on meds that made me feel so bad and then they were telling me it was me. In my own mind I knew it was the meds and I was taking a chance with it, but then I thought well what if they were right. I have been off psych meds for a year with minor returns to try to see if they will help, not really. Just more depression than i wanted to handle and it was enough to throw me for a loop in two days. I refuse to take any type of meds that have mood changes without knowing what it is first. If it is psych med I tell all the docs I am not gonig to take them. I know what they do to me. I had such a reaction to one i took withdrawal over the med itself. It was hard but way more worth my time than thinking how it could get me permanent hosp or my own death. Good for all the people that take care of themselves. It does not matter what people have to say about me taking meds or not, they will not ever know what i went through unless they decide to believe that I can be honest. If not well they do not need to be part of my life and me and when they get it then i will welcome them back with the knowledge they finally saw that i was truthful. Some docs do not think this with me, they call me non compliant. Not so. I feel better for taking me back.
It sounds like you have a really solid sense of what you need, and don’t need, for yourself, regardless of what people around you believe. That has been key for me, too: building an inner foundation that pays no heed to others’ opinions of me, and trusting what my gut tells me.
The weird thing is is that I feel the loss so much at times and the other times, i feel like i have accomplished more than most have by fighting for me. The emotional problems they can cause from hurting anyone should be recognized to more people. it is not about the money when it is you. It becomes much more personal. If I can make a person really see what it is that the medical field has done in their part, then to tell the truth maybe it will show those who do still care not to go with the flow. I say my story more now to show people it is not all good and this stuff gets swept under the carpet so as to make believe it is the survivor who is delusional. Not true. We all no matter what have a stake in our own lives, it should not be up to people who no nothing of who we really are
So poignantly said, Birdie. I too share a sometimes complicated relationship to my past– there are moments I feel the loss (of physical health during those years, of social connectedness, of passion, of hope, etc.), but more often, I feel a tremendous sense of peace and pride and excitement for my future. It is a strange thing to think that all that pain has given birth to all this joy, but I guess maybe it’s not so strange…
I think it’s awesome that you’re sharing your story more often. I have no doubt that it’s impacting people (even the people who disagree with you or call you “delusional”, as you say). You are the only person in the world with your story, and there are many out there who need to hear it.
The pressure to stay on psych drugs is intense. And I’m not even talking about coerced or forced treatment. Their guarantee that I couldn’t live without them turned out to be false. I argued about this recently with my psychiatrist and I mentioned Bob Whitaker’s books. The doctor replied “But he’s not a scientist.” That’s right, he’s not, but it doesn’t take a scientist to point out serious fallacies in a pseudo-science like psychiatry. Next time the topic comes up, I’ll tell him that psychiatry isn’t science — it’s a marketing empire.
You’re so right about the pressure. I was always classified as a “voluntary” patient (I’ve written here in the past about how I was actually involuntarily “voluntary”), so I was never faced with overt force, yet spent nearly half my life on drugs that I didn’t even realize (until the very end, after reading ‘Anatomy of an Epidemic’) were hurting me, because I’d internalized that belief that I needed to be on them for life. That, in my opinion, is force, just applied in an invisible, intangible way. It’s funny— people often challenge what I say by saying, “You’re not a doctor. You have no business saying these things.” My answer is, the fact that I’m not a doctor is all the more reason why I SHOULD be saying these things! Doctors become indoctrinated into the pseudoscience during medical school, and I too was once indoctrinated into the very same beliefs. Ahhh, to think that just six years ago, I admired psychiatrists and wished I wasn’t “mentally ill” because maybe I could have become one myself…
It’s a beautiful thing to be evidence of how flawed psychiatry’s beliefs are, isn’t it? ☺
Buddha taught that one is not to take anything a person of authority says as gospel fact unless it jives with your own sense of what is correct and proper and what makes sense to you. We are not bound to accept what comes out of the mouths of psychiatrists just becuse they have a diplomma, have a title in front of their name, and wear a white coat. Buddha said that this applied even to him and his teachings.
Hear, hear, Stephen. If only our justice system, the media, most parents, the education system; the military, the police, and about 99.99% of our citizens were connected to this insight. I’ve witnessed police and judges defer to a psychiatrist’s declaration; parents left and right, teacher after teacher too. To paraphrase Joseph Biederman, MD, above him, a psychiatrist, is God. While we know how ludicrous this proposition is, sadly, with society so spellbound by Psychiatry, he’s quite accurate.
Wonderful! When I took off mine (cold turkey, against the advise of my psychiatrist), I felt terrible for a couple of weeks. So terrible that I even thought about going back. I was encouraged by the numerous testimonies that I read online that eventually withdrawal effects go away. And they did! Since I was on a cocktail sertraline/clomipramine, the withdrawal effects that I experienced were mostly SSRI withdrawal. The most annoying of all were the so called “brain zaps” http://en.wikipedia.org/wiki/SSRI_discontinuation_syndrome#Neurological .
BTW, I want to take this opportunity to express my most sincere sympathies to all those of you based in Boston (you seem to be quite a few in MIA). You’ve been in our thoughts and prayers. We were all saddened by the unjustifiable loss of innocent life as well as relieved and celebratory when the remaining terrorist was finally caught. You brought the best of America in the aftermath of the attack, which made me even prouder of being a US citizen.
Thanks so much for sharing your experience here; it is vital for others to read. When I was in the hospital after my suicide attempt, the doctors stopped me cold turkey on 30mg of Lexapro, 200mg of Lamictal (recently down from 400mg), and 3mg of Klonopin. As I “came to” after the ICU, I was still too out of it to feel what was happening to me; a few days later, when my insurance told the doctors I had to leave the hospital, they shipped me to the psych ward, and there I faced the worst experience I’ve ever had in my life: cold turkey psych drugs withdrawal. For me, it was completely debilitating: I couldn’t walk or stand (needed a wheelchair, then a walker); I couldn’t sleep; I couldn’t eat or drink; I could barely talk because words sputtered out of my mouth; my mind was racing faster than it had ever raced before and I wanted to jump out of my skin. Cold sweats, migraines so bad I could barely open my eyes. When I went to the nurses’ station to ask why my mind was going so fast, they told me this was my “underlying condition” and that it was evidence of how severely “Bipolar” I was. NO ONE told me I was in acute psych drug withdrawal. I felt like a rabid animal, and couldn’t wait to be put out of my misery. They put me back on psych drugs about four days later, and it took me two more years until I realized I wanted to come off.
I say all of this to show how individualized the experience of withdrawal is: you stopped cold turkey and had some really terrible weeks, but later came back. I experienced what I did (which was compounded, of course, by the fact that I’d had a really bad overdose of a month’s supply of those drugs), and I guess I can’t say what happened after a few weeks off, because I wasn’t given the chance! At the end of the day, each person experiences psych drugs and psych drug withdrawal differently.
Congratulations on your freedom, friend! And thank you for your words about Boston. The last week and a half has been completely surreal. My apartment is a block and a half away from the bombings, so for me it was a week of fear (actually, more than fear, paranoia), anxiety, and of course, deep, deep sadness for those who lost their lives or their physical well-being. I worry that Psychiatry is already feasting off the trauma of this tragedy… and boy do I hope I’m wrong.
Thank you for sharing your experience.
Just to clarify one thing on my case, I stopped the drugs cold turkey and never went back (that was the end of it). I thought about going back to them, in order to come off in a more ordered way but I never did. I became very encouraged by the testimonies that I read online that such horrible symptoms were temporary and that eventually go away (as they did). And yes, they included cold sweats and migraines. It’s just that the brain zaps were the most annoying. I remember that a couple of days after I stopped, when I had not started to get really bad I went to watch a movie at the local theater. In the middle of the movie I began to feel so bad that I had to get out of the theater. It was the beginning and it lasted for several weeks. Eventually, things went back to normal (ie, as normal as before being on drugs). Over the course of 1 year I had been (although at different times) on risperidone, olanzapine, lorazepam, escitalopram (ie Lexapro), dextroamphetamine (no kidding!), sertraline (ie Zoloft) and clomipramine. When I stopped, I was only on sertraline/clomipramine. So my bottom line is this: although I would recommend people to follow an ordered withdrawal program, even if you stop cold turkey, symptoms, however horrible, are only temporary. They do go away. So keep the faith!
Regarding psychiatry’s exploiting the Boston tragedy, sure, they’ve been at what they do best for the last week. I’ve watched several so called “psychiatrists” (I think that “mercenaries of human misery” is a much better description) openly saying that psychiatry has drugs to “help” people in times like these and that people should not hesitate to ask for them. Can you believe it? Imagine somebody promoting marijuana or crack on TV to help people deal with life’s issues. They’d be put in jail, and rightly so. However these “psychiatrists” can promote junk that is way worse and they are lauded. Pathetic.
It is pathetic. What is even more pathetic is that the public sits in front of their televisions and accepts what the quacks say, hook, line, and sinker! It’s like they want to be convinced that they have a problem with their brains. They have problems with their brains alright and the problems have nothing to do with any so-called “chemical imbalances!” For the life of me I can’t figure out why people are so gullible and eager to believe all of this stuff that psychiatrists and the drug companies put out.
Pathetic and sickening, indeed!
Thanks Laura, for this passionate and articulate post! I hope to share some of it at a community meeting we will have here in Eugene next week that is about helping people who want reduce or come off psych drugs.
Thanks so much for the kind words! Wow, way cool that you’re hoping to share my post, and even cooler that there’s a community meeting in Eugene focused on helping people who want to reduce/come off! Very encouraging to hear.
Thank you for this empowering post and for your community service in assembling a list of supporters for those seeking to distance themselves from psychotropic toxins.
Psychotropic drugs have numerous harmful side affects besides the well documented physical ones. First, they wrongly imply that they treat a neurological dysfunction (a mental disorder); this pseudo-scientific premise promotes a harmful sense of victimization. Second, they fog the thinking process; this is problematic for people who desperately need to focus on solving real problems that cause emotional distress Third, they cause physical fatigue; again, this is problematic for people desperately needing natural energy to solve real personal problems.
Your post promotes empowerment- the most important element in overcoming emotional distress.
Best regards, Steve
Perfect summation of flaws of the medical model of psychiatry and the impact of psych “medications”. And I agree with you that empowerment is crucial to the process of coming off psych drugs, as well as to moving through intense emotional experiences, and leaving Psychiatry. Your words are clear and concise and hit the nail on the head! Thanks for the support!
As always, in solidarity,
Great work as always Laura. The key components alone would make an impactful book. So my incredibly gifted writer friend – when will this happen?
Thanks for this, comrade. If I could blush through the internet, it would be happening ☺. I can definitely say that somewhere in the future, I plan to write a book on coming off psych drugs. There’s at least one book on the horizon before that, though…
So glad to call you a friend and fellow freedom fighter. The work you’re doing in CT is truly inspiring!
As always, your writing is so inspiring, Laura.
Thanks, my dear friend! I feel the same away about your written contributions to the movement, too (and all the other contributions you make, as well, of course!).
Such a beautiful piece, Laura! As usual there is such a wealth of information and experience here that it takes time and multiple readings to absorb the depth and breadth of it all.
For my tapering and withdrawal, points 7. & 9. were what I used and then nearing a year into withdrawal point 8. came into play with finding you and connecting to others who have gone before me.
I congratulate you on compiling resources on those professionals of varied disciplines who are familiar and friendly to aid those along the coming off process. I would love to help if I can! You know my locale and my contact info so if you’d like me to make calls to people in my area to build the lists for MIA, please invite me in on the protocol.
I look forward to the day your story of recovery from Psychiatry gets blasted far and wide! You have tremendous wisdom to share.
This directory will be an important, and much needed, addition to the MIA community. While there aren’t many who do the work of helping people come off, they’re out there, and we’re doing our best to find as many of them as we can. If you come across any in your own time— whether through Google searches, word of mouth, etc. — definitely email me their info, so that I can reach out to them as a representative of MIA.
Glad to know you, and grateful for your freedom!
In solidarity, and with love,
Thank you for your insights, offered motivation, and for your continued effort towards the creation of a resource directory for those wanting to come off psych drugs. I identify with your withdrawal experience you’ve shared, in several profound ways. My suffering and intense perceptions and experiences which drove me to rely on and trust psychiatry – in a paradoxical way, were overcome by the effects of psychiatry’s drug cocktails being far more intolerable than the agony of my experience of my human existence (which drove me to accept psychiatry after resisting several times initially). The cultural and social norms within which I interacted when I began to experience extreme states of mind – did not promote any arenas other than psychiatry as appropriate responses to or forums for exploring said experiences. So I went to psychiatry and was told that the most viable thing to do was to view my experience through the lens of a chemical imbalance and that any deliberate effort on my part that didn’t include psych drugs (which might cause sexual dysfunction, lower my white blood cell counts, or cause weight gain and or diabetes – would most likely fail (I guess this anecdotal argument was based on the psychopharmacological industry’s revisionist history of the world and human civilization). But some innate or primordial instinct told me that this line of thinking seemed inconsistent with my intuition about me and human communities – and that this plan didn’t seem healthy or likely to be successful. So I left psychiatry and didn’t take their drugs and wasn’t encouraged by anyone to intentionally respond to my overwhelming experience of life in any other way – nor did I take it upon myself to respond to my debilitating experience of life in any deliberate way. And eventually my experience of the world consumed me in a crippling way and I couldn’t function or be present or engaged in my life in any way that satisfied me. So I went back and took their drugs and became a professional patient. I’ve rambled on in an attempt to provide context for my interpretation of a profoundly empowering concept I perceive in your thoughts about coming off of psych drugs. This concept I perceive is that perhaps the most important variable for coming off of psych drugs is having a personal reason that is part of your inner-being, for wanting to come off. For me, my inner-motive for coming off was to give myself another chance to have an exciting and fulfilling life rich in texture and joy. The effects of the ten drugs I was on (at least three and as many as six different ones per day) every day for four years – made my life an exhausting and torturous constant battle against fatigue, involuntary muscle movements, and an irrepressible desire to eat. I slept at least 16 hours per day for over two years. This daily torture consumed me and distracted me from whatever distress propelled me to trust psychiatry. So I decided that my mission was to give myself a chance to live a life that I am engaged in by coming off of psych drugs – even if this life involved extreme states (I vowed to experience them without psych drugs). I tried to come off unsuccessfully several times “outpatient.” Then I checked myself into a psych hospital with no intention of coming off of drugs. I was just tired and beaten on so many different levels and knew that I had to change my approach to life even though I had no clear thoughts about how to do so and wasn’t optimistic about being successful. Many of my psych-survivor friends find what happened next hard to believe. I met with a psychiatrist who encouraged me to stop whining, take responsibility for my own life, and suggested that I had received poor psychiatric treatment and recommended that I come off of all of what he called “psychiatric medications.” This floored me and possibly influenced the trajectory of my life more constructively and beneficially than any other singular interaction. So against, the quite vocal opposition of my “outpatient” “treaters,” I began a rapid detox from klonipin, geodon, risperdal, and effexor – even though I didn’t want to at the moment, I took the psychiatrist up on his suggestion because he had struck on chord with me on a fundamental level because I knew that I had been wanting to come off of drugs for at least two years because I knew that I deserved another chance to enjoy my life and knew on a profoundly deep level that giving myself this opportunity required me to come off of drugs – which I had tried several times and was unsuccessful in frightening ways. My experience suggests to me that coming off of a daily regimen of benzos that I had been on for years – in one week inpatient – was a blessing in disguise. It was a blessing because it was so harrowing and hellish that it sort of desensitized/strengthened me and my resilience. I was in a sur real nightmare full of illusions, constant panic, disturbing noises, intense temperature swings, and sweating – for the time I was inpatient. When I left the hospital benzo free and with a plan to taper off of geodon, risperdal, and effexor, I was still constantly panicked and in a hellish space somewhere between life and death for most of the day every day. But I was resolved to keep going and was committed to listening to whatever I was experiencing and sitting with it and I changed my relationship to my experiences and drastically increased my tolerance for suffering. I found profound comfort in my commitment to try and create/return to a life in which I was present and energetically engaged. And I wasn’t worried about any potential withdrawal experiences from geodon, risperdal, and effexor – after benzo detox brought me to my knees and I found peace and inner ease in accepting that if I died at any moment or something terrible happened at any moment, “so be it,” I wasn’t going to worry about what might happen or be afraid of dying. After about four months my psychological hellish fog lifted, I was drug free, and have been living an exciting and happy life which involves deliberate discipline and structured wholesome activities – ever since.
I am so happy to know you. Your story is inspiring, and I am honored to be a revolutionary with you and Deron and Laura and all of our comrades.
Once in a very great while you do find a psychiatrist who isn’t a quack and a shill for the drug companies. They seem to be far and few between these days but it’s good to hear that you discovered one and that he empowered you to take charge of your own life. Too bad we can’t clone the guy! Glad that you’ve found healing and well-being!
Ahhh, my friend, I loved reading this.
There are so many pieces of wisdom in here. I completely agree that the psychopharmacological industry has written a mind-blowing revisionist history of humanity, and I would take it further to say Psychiatry, as a whole, has, adjusting the story it’s told about human experience to suit it needs, selling it effectively with scientific language, cleverly shifting the publics understandings in subtle and insidious ways.
You touch on so many key components of a successful psychiatric liberation here. I agree fully that listening to one’s “innate and primordial instinct”, as you so aptly put it, is crucial to the process. This, of course, is so hard to do when you’re completely dysfunctional in a drugged life of eating and sleeping and zoning out and shutting off and being physically ill and whatever else comes with that. But like you said, you found your personal reason for coming off, which maybe was catalyzed by that psychiatrist whose path you happened to cross, and that was all you needed. It was the same for me, although the catalyst was slightly different. At the end of the day, I believe each of us had everything we needed inside of us to free ourselves from psychiatry; we just needed to find the way to tap into it.
The other part of your comment that particularly jumped out at me was where you said, “I changed my relationship to my experiences”. I think you put that so well, and it is something I can totally identify with. A lot of the experiences I was going through (particularly the really painful ones) didn’t change; I simply changed how I related to them. The word I like to use is “coexist”— I learned how to coexist with my suffering, rather than see it as something to be scared of, or to run away from or deny. As the result of embracing the pain, it eventually started to lessen. Sounds like this was your experience too.
I really appreciate you speaking so descriptively about what your withdrawal was like, and think it’s heroic the way you pushed through and didn’t give up. As I said in my piece, each person has his/her own threshold for pain, and it’s not as though some people are “weak” and some “strong”; people just relate to pain differently, and I very much identify with the way you related to yours— pushing through, determinedly, and not going back. Like you said, getting through intense psych drug withdrawal (particularly benzo withdrawal) makes the vast majority of the pain of life on life’s terms a walk in the park… That’s been very true for me!
Thanks for this really thoughtful and articulate piece of writing, comrade!
Thank you Laura. This blog post about coming off you wrote – is important and powerfully impactful. Your post helped me frame several thoughts about my narrative (which I’ve written and spoke about in disconnected forums) – into one reflection which is a tool for myself and can potentially be a tool for anyone who chooses to consider my thoughts about my own coming off story. Like you eloquently expressed in your piece, we can draw strength from thinking about those who have come before us. I have gathered strength in a visceral sense from many of my fellow humans who have been “treated” by psychiatry. I have also drawn strength in an intellectual sense from the words and thoughts of people like David Oaks, Will Hall, and Darby Penny. This intellectual strength is a synthesis of their ideas and words – interpreted by me and infused with my own perceptions. Reflecting on my life via written word is one of the most cherished pursuits I engage. Your words in your blog post apparently motivated me to reflect on my journey through a lens I needed to look through – (hence I wrote a rambling tome as a comment). Thank you for helping me clarify for myself – that my reason for coming off of drugs was an integral part of myself. It was the manifestation of knowing that I owed it to myself to try to overcome my existential pain by moving towards a meaningful and fulfilling life. Instead of either doing nothing or drugging away my humanity. In other words – I innately knew I owed it to myself to engage my existence – which I had failed to do when I first reached out to psychiatry to talk about my life. I knew that if my life was to be worth living – there had to be a way other than drugging myself and other than shrinking from my experience of the world and doing nothing intentional when psychiatry expressed to me – “come back if you change your mind about not drugging away your humanity.”
Every word here, so beautiful :).
“. . . against the wishes of my “treaters”, and in the midst of hell on earth, I reclaimed myself. My Self. By no means has a second of it been easy, but it’s certainly been the best decision I’ve ever made in my life.”
Laura, this statement is so true for me. I am so glad you wrote this part of your story, and I love how open you are. Thinking about where I am in my journey, your writing gives me great hope about my own “Self” discovery. If it were not for the good friend who introduced me to Bob’s book, his immediate response to my email (driven by the spark of rage that awakened me), and your willingness to share my story, I might have lost hope on my path and waved my own white flag of surrender back into psychiatric treatment. I have finally come to a much more meaningful place of surrender – or rather acceptance – where I know I can never willingly go back to that system of endless prisons. Now I am in a limitless space where I actually feel like I am helping others discover their “Selves” as well. Thank you!
Hi Mary Anne,
Isn’t it amazing how the seemingly small, random encounters in life end up having the most profound impact? Just like you had a series of events that started with finding ‘Anatomy’, I did too, and many others along with us, and it’s such a testament to the incredible potential we have as human beings to reawaken and to transform, and that it sometimes only takes a book, or a conversation, or a left instead of a right on the road, if you know what I mean.
To come to the place in which you know, in your deepest heart of hearts, that your voluntary relationship to Psychiatry is over is a beautiful thing. In the beginning, when I was doubting myself on a daily basis, there was a part of my mind that said, “You’re crazy for thinking you’re not mentally ill, and for thinking you can come off these pills. You’re gonna come crawling back to your doctors soon enough…” That voice started to quiet over time, as I healed and felt more and more relief from the withdrawal. Now, it’s hard to imagine I ever doubted myself, for even a split-second.
I’m really grateful for your story, and for your voice, which is so important. The feeling of being in a “limitless space” is one I completely resonate with: it is evidence of freedom, and while the freedom isn’t easy or pain-free a lot of the time, it outweighs being numbed and disconnected behind bars any day, for me!
Thanks so much for writing this out…sharing your experience and giving others lots of latitude to chart their own course and have their own experience.
I’m so sorry the conventional system failed you, but it does seem you have made lemonade out of a lemon windfall and learned many lessons through this dark night. You have great strength in your soul.
Thanks for the message! I know, for me, that there was no way the conventional system could have ever not failed me, for its very foundation is flawed and built around a myth (i.e. that human suffering is a medical condition that needs treatment by medical doctors; or even, that human suffering is always a problem of the mind, and thus needs psychology.) I make sense of my experiences as having always been spiritual in nature, although I was never aware of this because American society never showed me a path to a spiritual life (for me, “spiritual” means being connected to my human spirit, to greater humanity, and to the earth).
Of course, the “mental health” system had no business treating this spiritual dilemma I had (of feeling disconnected from my human spirit and from the human family), because it wasn’t a “mental” problem or a “medical” problem in the first place. While my struggles may have often manifested themselves in the way I thought (aka in my mind), this didn’t mean the problem was my mind, nor was the solution to “treat” my mind. Of course, I only discovered this by spending all that time in the “mental health” system; who knows if I would have found true inner peace had I not first had my sense of Self ripped away from me by the “mental health” system… Thus, I wouldn’t change a day of those thirteen years ☺.
So glad to know you and so grateful for the truly alternative and humanistic work you do!
With love, and in solidarity,
Thank you once again for an informative and fascinating post. I have a few thoughts and questions that I offer not with the intent to challenge you but rather to foster discussion of this important topic.
You write that you initially attributed some of your post drug problems to alcohol withdrawal but then learned that it was due to the psychiatric drugs. How did you exclude alcohol? Although most people are familiar with the serious short term withdrawal from alcohol I have known people who appeared to have quite prolonged withdrawal states that seem to have much in common with what is described by others who are withdrawing from psychiatric drugs. This may be a minor point (because I am not suggesting that your experiences could not be due to everything you had stopped), I am just curious why you think that alcohol withdrawal was not a contributing factor.
My other thought is that in my own mind, I have come to think of the problems of people who were treated for problems that include anxiety and depression as generally distinct from those who experience psychosis. I know that categorical distinctions are always flawed, however, I still find this general distinction to be of value. People who experience extremely dysphoric mood or anxiety states are more often coming to our clinic seeking treatment. Whereas people who are experiencing psychosis are more often in the category of those who do not want treatment. People in the latter category often have others who are insisting they need treatment whereas people in the former category seek it for themselves (I realize that this may not hold up for children and adolescents).
So as a physician, I face different challenges. The person with severe anxiety is often pleading for me to prescribe something even when past experiences with psychiatric drugs have been unhelpful. The person with psychosis who does not want to be on drugs rarely complains about withdrawal. In those instances, the conversation is about avoiding harm from the psychosis, from avoiding getting into trouble from the condition or situation or extreme stress that led to the person being on medications in the first place.
I reiterate that this type of categorical distinction is fraught with exceptions yet I still find it important because the conversations I can have with people who I either I am suggesting stop (or do not add more) psychiatric drugs in the face of their pleas are so different form those who insist on stopping in the face of previous problems they have had that have gotten them into serious trouble.
I don’t know if anxiety/depression is so much different in many cases of psychosis, which word itself is not very rigorously defined. Prolonged stress, anxiety, lack of sleep, etc, can in some persons lead to what will be diagnosed as psychosis. It’s not all psychosis patients, but I think in psychosis patients it’s not all anosognosia, they know from experience or otherwise that their drugs (large doses of neuroleptics) can seriously suck subjectively, or in some cases they know of other dangers. The outward signs of misappropriate behaviour may calm down but often they’re trapped inside their mind in a miserable state. If the drugs made them “normal” they would gladly eat them.
I am not dismissing anyone’s assertions that the drugs are not helpful. I am talking about some individuals who seek drug treatment – even in the face of these drugs causing problems and not being terribly helpful. Although some of this may be due to the hype of the “pharma/mental health industrial complex”, I am not convinced that all of it comes from that.
One of my points was that the psychotic patients maybe know from experience, etc, that their treatment with heavy doses of neuroleptics really suck. Start treating them with heavy doses of benzos or opiates and see if they get more compliant. 😉
The people with anxiety or depression don’t get quite as severe effects from their drugs. The drugs may even help in some way, at least in the beginning.
Thanks so much for starting dialogue here; I really enjoy exchanging ideas with you.
To answer your first question, about how I came to see that my intense suffering was due more to psych drug withdrawal than alcohol withdrawal, I guess I can’t say that I have a clear answer, but would attribute it to a few factors. I didn’t come to this realization until quite a ways into the experience, and have come to believe it to be true more and more as time has gone on and I’ve grown further away from both the alcohol and the psych drugs. The first explanation I’d give is that my destructive relationship to alcohol was very much tied to my prior relationship to psych drugs. Yes, I was a “binge drinker” in high school, but when I look back at that time, I see that my life continued on in a highly functioning way (i.e. grades, sports, social life, passionate interests in things, physical health, etc.). In other words, on school holidays, I got drunk with my friends, and sometimes got myself into trouble, but alcohol was not an “essential” part of my life, in the way it came to be many years later. I now believe that because I was very “non-compliant” with psych drugs during those years, my body was able to metabolize and handle alcohol in a way that didn’t rip my life apart.
When I fully embraced Psychiatry as an 18-year old, and began to willingly take psych drugs every day, my life began its downwards spiral. “Binge drinking” in college was certainly a factor for me, but again, I didn’t really stand out as having a problem with alcohol, although I certainly started to face more consequences (black outs, etc.). Because I somehow managed to play a sport during those years, I’d go months without touching a drop of alcohol (we had to be “dry”), so while I did have more serious issues when I drank heavily, they were, for the most part, few and far between (other than my freshman year in college, when I drank very heavily in the fall and winter).
Hang in here with me… I’m getting to my first point, I promise!! By the time I graduated from college, I was absolutely miserable. I had an inpatient hospitalization under my belt, had already become a professional patient, and was on a slew of psych drugs. I thought about killing myself every day. As I felt so horribly disconnected and hopeless, upon graduating, I began to drink alcohol every day because it made me stop caring about how miserable I was, and about the life-long sentence of “treatment-resistant Bipolar” I’d been given. This is when alcohol really began to be a problem. For the next four years, I drank heavily almost every day, in combination with heavy doses of benzos, SSRIs, antipsychotics, and mood stabilizers.
Of course, throughout this whole downward spiral, I believed it was my “mental illness” at play. Thus, when I got sober, I thought of myself as having a “dual diagnosis” (a concept that I think is completely ludicrous and damaging). Never once did I think the “meds” were making me worse; never once did I think, in fact, that there was actually nothing wrong “with” me. Thus, I got sober in the beginning, thinking that I would have to struggle with my “other disease”, “Bipolar”.
I look at this history now and see very, very clear evidence that my true transformation into a miserable, hopeless, isolated, suicidal, and dysfunctional human being began the day I began to willingly take psych drugs. Alcohol came in as a true “problem” years after I started my “med regimen.” My emotions, thoughts, and experiences of the world were warped well before I began to “abuse” alcohol, and thus, I believe that the suffering in my withdrawal experience has been much more tied to healing from the trauma of my psych “treatment” than my “self-medication with alcohol”.
I believe that had I never began to take psych drugs, alcohol wouldn’t have been the destructive force in my life that it ended up being. That being said, I have no interest in ever taking a sip of alcohol for the rest of my life, because to me, it’s not worth risking everything that’s been unfolding in wonderful ways around me.
So, to sum up this part of my answer to your question: my relationship to psych drugs was so much longer and more damaging that I have to believe the withdrawal from psychoactive chemicals has been predominantly recovery from those drugs, and not alcohol.
The other thing that I believe distinguishes my psych drug withdrawal from my alcohol withdrawal was the fact that along with the actual detoxification from the “meds” was the existential detoxification (i.e. leaving behind the “mentally ill” identity). This was fraught with emotional pain, confusion, deep sadness, anger and anxiety, of course, so I believe the combo of both the physiological process of withdrawal along with the existential withdrawal of cleansing myself of the “Bipolar” identity was very significant.
The last factor I’d give to you is the fact that when I quit drinking in February 2010, I was still on five psych drugs for several more months. While I was quite a live wire in those months, they were NOTHING compared to what happened when I then started to taper off the drugs around April/May (I need to get the exact timeline of that still, so that’s an estimate). This, to me, is a sign that my body was much more impacted by the psych drugs than it was the alcohol (and of course, it was doubly impacted by the combo of both).
So… that is the very long-winded answer to the first part of your comment. I’ll post this here now, and address the second part of your comment shortly!
Thanks, Laura, for this very thoughtful response to what in some ways was probably a more mundane question, i.e, could alcohol withdrawal have contributed to how poorly you felt. It probably does not matter if alcohol contributed in some way although I accept your view of it since you were the one living it. You also point how that withdrawal was more than a psychiological thing and was related to your whole relationship to the drugs and to psychiatry. I see this all the time and a big question I have is how to help people regain a sense of autonomy. I think some have called it “locus of control.”
One other comment re: dual diagnosis. I suspect that you and I may agree that it seems silly to talk about adding diagnoses when we are not even sure what any of these diagnoses mean. It is all a part of the reification of categories that have such limited validity. I also found it interesting to read of the transition from a diagnosis of Bipolar to Borderline This often is what happens when a person does not have the desired response to a drug. It is not seen as the failure of the drug to be beneficial but a reflection of an inaccurate diagnosis.
Thanks again for your openness. I hope we get to meet someday.
Sorry it’s taken a few days to respond to the second part of your post. Let me see if I’m understanding what your saying correctly: acknowledging the inherent problems with categorizing people’s experiences, you’re saying that some people who come to your clinic (who experience “anxiety” and/or “depression”) really WANT to be on these drugs and thus your role becomes to inform them of the potentially damaging “side” effects of them, whereas others who experience reality in a way that’s gotten them labeled “psychotic” don’t want to be on them at all, so you end up talking with them more in a strategic way about how they can be in the world in a way that doesn’t bring unfortunate consequences. I might have misunderstood what you’ve said here… Apologies if I have.
While I definitely don’t ascribe to the classification method you’ve used (as I know you anticipated I’d say), it seems as though you’re talking about two different groups of people who are distinguishable in the way they relate to psych drugs. This, I think, is a more helpful classification (albeit one that is too reductionist and over-simplified): there are those people out there who have been harmed (or at best, not helped) by psych drugs who identify with being “mentally ill” (i.e. “Depression” , “Anxiety”, etc.), and they continue to want to take psych drugs, hoping that they’ll eventually help; then, there are those people out there who have no interest in psych drugs, who don’t see them as an important or relevant part of their life, and who want nothing to do with them, and these people often to not want any psychiatric “help” in the first place, nor do they see themselves as being “mentally ill.”
In terms of those who really want to take psych drugs, despite a track record of no success, I am a believer in truly informed choice (that is, so long as these drugs are on the market and being prescribed.) By this I mean that a person is told:
(a) there is nothing wrong with your brain that’s causing you to feel this way
(b) these drugs are not actually “medications”/”medicines”, because medications treat disease/illness (which you don’t have); these are psychoactive chemicals that change the way you experience yourself and the world, similar to alcohol, marijuana, cocaine, etc.
(c) thus, these drugs do not “fix” anything that’s “wrong” with you; these are not “antidepressants”, “antipsychotics”, “anti-anxiety” meds, etc., because they don’t act against a particular mood or state of mind (here, I would suggest they read Joanna Moncrieff and David Cohen work); these drug categories are misnomers.
(d) here is the information on the fraudulent and deceptive nature of pharmaceutical studies of these drugs (and I’d show them Ben Goldacre, Leo and Lacasse, Kirsch, etc. etc.); when you see/read/hear ads on the benefits of these drugs, you simply can’t trust what you’re hearing.
(e) here is a list of all the potential effects (which are not actually “side” effects, but main effects that the pharmaceutical industry has classified as “side” effects)…
(f) here is the science on long-term use of psychotropic drugs (and I’d refer the person to ‘Anatomy’, Grace Jackson, etc.)
(g) if you go on these drugs, it might be incredibly hard for you to come off, and the negative effects of withdrawal might outweigh anything you’ve ever experienced
This, to me, is as fully informed as a person can be about these drugs. Until the day they’re pulled from the market, we are stuck with them, and thus, true and accurate knowledge (when that’s even available… at least, knowledge about what ISN’T true or accurate) is our best companion when it comes to the decision about whether or not to go on them.
In terms of those who experience the world in a way that gets them labeled “psychotic”, my first instinct is to want to high-five whomever it is who’s come into your clinic with no interest in being on the drugs. Not only do we know that antipsychotics don’t actually act against “psychosis” (whatever the hell “psychosis” even is), we know that they cause “tardive psychosis” (along with the slew of other horrible effects), so in my opinion, putting folks labeled “psychotic” on antipsychotics doesn’t even make sense from a medical standpoint. I have no doubt that you have difficult conversations with folks who are acting in ways that could get them arrested/fired/divorced/committed/etc., and as a person who’s supported others in that kind of experience, I can definitely attest to the fact that it is very intense, emotional, and draining— I think it’s absolutely wonderful that you actually spend time with people collaboratively so that they don’t get committed/arrested/etc. and so that they can continue on without psych drugs in their bloodstream. I am sure it isn’t easy, but it is so profoundly important that you do it.
There is, of course, a line between supporting someone who’s labeled “psychotic” by helping them strategize on ways to stay free, and becoming paternalistic/maternalistic/etc. I’ve supported people who’ve stopped psych drugs cold turkey and acted in ways that a traditional psychiatrist would call “floridly psychotic”. I’ve shared my experiences with these folks about what happened to me when I was stopped cold turkey in the hospital (i.e. hell on earth, and the worst so-called “mania” I’d ever experienced), and about what happens to the brain when psychoactive chemicals are suddenly removed, and I’ve shared with folks that, “Yah, if you are in the public world doing X, Y, and Z, you might get locked up against your will. Is this a risk you’re willing to take?” However hard it’s been for me to watch people make those choices, and get locked up, I believe in the dignity of risk, and in a person’s right to make his/her own choices, even if the consequences are really awful and oppressive.
I’m not really sure where I’m going here… And I hope I’ve come close to accurately interpreting what you were saying… I think you raise a really interesting point— that different people relate to psychiatric drugs differently, and thus, that the conversations we have about psych drugs end up being very different. If I’ve missed the mark, please let me know, as I really enjoy talking with you, and am so appreciative of your hard work to change the way you are with people at your clinic. It is a noble effort, and I appreciate its tremendous discomfort and complicatedness.
Thanks for the response. I think you did accurately capture my question. You make a good point and a helpful distinction – this is not as much about symptoms as the different relationships people have with taking drugs.
I also love this statement: “I believe in the dignity of risk.” This gives me an interesting framework to think about these very tough discussions. I do not have more to say right now but I will keep this phrase in mind.
I appreciate your view of true informed consent – that is a critical, if not the most critical part of this discussion.
I greatly respect how you have overcome your struggles. But unfortunately, I am about to be the voice of negativity.
I realize that everyone’s experience is different as far as withdrawal but to essentially infer that it is ok to cold turkey because of some people were successful, simply is playing a dangerous game in my opinion.. Yes, some people may be lucky but if you’re not, you could have serious problems big time including suicidal ideation and death. Is that really something we should be telling people to roll the dice on especially when alot of people are getting zero support from their providers regarding withdrawal?
I agree that no one is an expert, including me but when mainstream and alternative professionals and drug companies agree that psych meds should not be cold turkeyed, I think that warning needs to be heeded.
And by the way, cold turkeying successfully has nothing to do with attitude. I cold turkeyed Prozac twice under stressful and wonderful circumstances and still become severely suicidal.
Finally, since I know this is a hot button issue on this board, I would greatly appreciate it if people could be respectful in their replies. I know I am in the minority on this issue and that is why I initially hesitated to say anything. But I felt I had to speak up.
If you read my post, you’ll see that I was very careful to not say that any one way (including cold turkey) was “OK” (or “not OK”); I was simply articulating that people have successfully come off in many different ways, which happen to include cold turkey. None of what I said was an endorsement for a particular way over another, especially cold turkey. Please don’t read meaning into what I wrote that wasn’t clearly there; I select each word I write very carefully to ensure that I do not promote any one particular way, and I also never say that a particular way “can’t” or “shouldn’t” be done.
I, too, know the hell of cold turkey withdrawal. After my overdose in 2008 (I believe I mentioned this in an earlier comment here), I was stopped cold turkey on 3mg of Klonopin, 30mg of Lexapro, and 200mg of Lamictal (that had recently been cut down from 400mg). I wouldn’t wish the experience on my worst enemy— I couldn’t walk or stand, I couldn’t eat or drink, sleep, talk, or think. I had the cold sweats for a week straight, and was completely out of my mind. It was literally hell on earth. Never again would I ever want to endure that experience. So, wherever it was that you interpreted my writing as saying that I think cold turkey is “OK”, you misunderstood.
Additionally, I never said that withdrawal is about “attitude”. If you look carefully at what I said, I wrote that finding purpose and meaning in the withdrawal process, for me, was the first and most important step towards a successful withdrawal. I never ever said that it’s the only thing you need to come off. I’m not sure how you read that into what I said, as I wrote out a whole slew of factors that I think are crucial to coming off, and not one of them was “attitude”.
You are right that this is a hot button issue. I stand firmly in the place of non-judgment when it comes to coming off psych drugs, because I truly believe that there is no “right” or “wrong” way to do it. Thus, I never push an agenda, or one particular “method”, or anything else. There is no denying that some people successfully come off after stopping cold turkey, nor is there no denying that some people successfully come off after tapering slowly over many years, and everything in between. To be wedded to one way and against others is, in my opinion, to be close-minded.
I’m really glad you made this comment, and I hope you know that every word I’ve written here is with the utmost respect for your opinion. I wanted to be sure to correct your misreading of my post.
Let us hypothetically consider an individual whom might share their story of coming off of psych drugs cold turkey and omit the caveat – (which I agree with you is the prudent thing to do) – that cold turkey can be quite dangerous. If an individual shares their personal story of coming off cold turkey and doesn’t state that this can be dangerous or maybe isn’t prudent about when and where they share this story – (which by the way is not at all a sentiment contained in Laura’s words) – are you suggesting that they have done something wrong by expressing their perception of their experience – because someone else may get sick or die coming off cold turkey because they infered that they will likely have a comparable cold turkey experience as someone elese?
I don’t think you’re in the minority here on MIA. I’ve not run into anyone who advises going cold turkey off of these toxic drugs. I had to do it three different times and was extremely lucky but would never advocate anyone doing this unless there just was no other choice when you found yourself between a hard spot and a rock. It would have to be a choice of your life or the drugs as far as I’m concerned.
I never got the idea that Laura is advocating going off these things “cold turkey.” This is just my HO.
I think this is what I was reacting to:
“” I stand firmly in the place of non-judgment when it comes to coming off psych drugs, because I truly believe that there is no “right” or “wrong” way to do it. Thus, I never push an agenda, or one particular “method”, or anything else.””
Aren’t you essentially endorsing cold turkeying when you say there is no right or wrong way to do it? I understand the issue of not being judgmental of people but in my opinion, you can be non judgmental while at the same time, letting someone know that cold turkeying is a very bad idea unless there is a medical emergency.
Perhaps I am splitting hairs but this isn’t the first time I have felt this way after reading posts on withdrawal.
I don’t see how she is endorsing cold turkeying. She is just saying that it may work for others and not work for others, that’s kind of her point, we are diverse.
I mean, yes it’s possible but not often wise to go cold turkey. It works for some people, for others not so well. I don’t think she has made any points about in which situations that would work. We’re in a gray area. Laura was repeating the point that we are diverse in what was we get better.
“Letting someone know that cold turkeying is a very bad idea unless there is a medical emergency” is quite an opinionated statement. There ARE people out there who successfully come off by cold-turkeying. While the odds of this may be slim, and the risks might be exponentially high, who are we to tell them how to come off, and to decide for them how they should live their life? If they’re aware of the potential harm, why shouldn’t they be allowed to come off however they want? I know people who have successfully stopped cold turkey and had no problems at all. Should we deny people the dignity of risk? Isn’t that what the “mental health” system does to people on a daily basis?
If you broke down my tapering experience— five drugs in five months— you could argue that I “cold-turkeyed” off. Here I am, happier and healthier than I’ve ever been in my life. For all the mistakes or lack of knowledge along the way, and yes, for all the intense suffering, should I have been denied the right to come off in the way that I did? Who knows… had I drawn my taper out for an extended period of time, maybe, for me, it wouldn’t have been successful.
If I’m hearing you right, I think you’re saying that by not endorsing one thing, I’m endorsing something else. In other words, absence of endorsement of A means endorsement of B. Let me give an example of how this line of thinking doesn’t make sense to me. With the line of thinking you’re applying here, one could argue that by not endorsing religions that support gay marriage, you’re endorsing religions that believe gay marriage is a sin, and thus, you’re against gay marriage. Or, another example: by not endorsing capitalism, you’re endorsing socialism, or vice versa. It would be really exhausting to believe anything about anything if we were forced to endorse one belief system to show we don’t endorse another… Do you see what I’m saying?
At the end of the day, people DO successfully come off psych drugs cold turkey. Maybe more than we realize, because maybe they just go on with their lives and we never hear about it, and only hear about the struggles in online forums. Or maybe not, and I’m wrong about that. We just don’t know. Saying this does not mean I endorse cold turkey. It’s just stating a fact about cold turkey withdrawal– that people have successfully done it. Who are we to deprive people of the full spectrum of “coming off” methods? To me, it is hypocritical to encourage people to find freedom from Psychiatry, and then to enforce strict protocols for how they can find that freedom. If they’re aware of the risks, why should they be denied the right to make risky choices?
With full respect, and in solidarity,
I think Laura never did NOT endorse cold turkeying. That said, I did it, it was a hell of an experience in the physiological realm ONLY (I was never suicidal not before, during or after the drugs). The only reason I wouldn’t recommend it is because it is severe. However, I would do it again without hesitation. A few weeks later, I was a free man. I was very encouraged by the testimonies I read online that withdrawal effects were only temporary. So while not everybody might have the stamina for it, it’s faster than the alternative.
I got messed up: Laura DID NOT endorse cold turkeying. That’s what I meant.
Hey Laura, Thank you for your post. This is – as others have already stated – such an important issue and it’s going to take many voices to counter the deeply embedded beliefs so many have about medications and psychiatric labeling. On another note, even though I feel like I’ve gotten to know you fairly well over this past year, it’s always great to read bits of your story and learn a little more. You’re such a strong voice and I see your voice being a part of what is helping to draw out so many other voices! 🙂
I feel the same way about you! You’ve been a really important part of my post-psychiatry life, and I’ve learned so much from your experiences, your words, and your wisdom :).
Excellent post. I urged my 29 year old son to read it, to know that there are others his age who have been through what he’s been through. These kinds of stories (including Matt Samet’s most recent) are inspirational. How did you get your family members to buy into the idea of your going off medications? I see this whole area as fraught with difficulties. Perhaps you have been more explicit elsewhere in the answer threads to this post, so I may have missed it. Since you were living at home while going off meds, chances are your behavior/reactions/withdrawal would have been very disturbing to those around you. Relatives get panic stricken and usually want the person back on drugs toute suite. So, how did you finesse this with them?
If I think back to the way my family was with me through this journey, I can’t remember a single time they suggested (or even hinted) that I should go back on the psych drugs. There were certainly many moments of fear, frustration, sadness, confusion, etc. for them, but to be honest, because I was oriented towards the future and towards getting myself back, I think they hung in there with me and trusted the process. Even though the withdrawal was really awful, I never once thought about killing myself, and that was such a change from the nine years of daily thoughts of suicide that I think everyone breathed a sigh of relief, even though it was a really rough road back.
There were definitely tense conversations with family members about the amount of time I spent sleeping (for the first several months, if I wasn’t at the IOP or in a sober meeting, I was passed out cold), or about how horribly depressed and unmotivated I was, or about how irritable and angry I was, but everyone just hung in there with me. None of us really understood at the time that this was directly connected to withdrawal. I know they were concerned, but they never expressed to me worry at the level of “Maybe you should go back on the drugs”, or “Maybe you should go to the hospital.”
As I’m writing this and thinking more about it, I think the key piece, as I said above, was that I never once thought about killing myself during the withdrawal process. Sure, there were plenty of moments in which I wondered if I could keep going, or if my life would just be spent locked up from the world curled up on the sofa, but I never actually wanted to kill myself. That, I think, was probably a big part in helping my family put their heads on the pillow at the end of the day.
I feel a lot of love and empathy for the families of people in the process of freeing themselves from psychiatry. Of course, family members can often get paternalistic/maternalistic and way too involved in a person’s life and decision-making, and this I think can do great harm. The process of coming off psych drugs is about reclaiming one’s agency and sense of self, and thus, if family is acting as the agent, that can really damage the process. But at the end of the day, family members have gone through their own trauma, and it is certainly a painful experience to witness someone else in the midst of struggle, so I understood that often the intentions are good. I think the more that family members can trust the person, and have faith in that person’s ability to find him/herself, the smoother the process. That trust is something the person can feel (at least, I did); it doesn’t have to be said, it just emanates from that family member’s body. I can definitely say that I felt this trust from my family, and it was HUGE in my successful liberation. I knew they believed in me, so when I couldn’t believe in myself, that kept me going.
Beautiful writing, thank you, Laura.
As you know, when I likened cold turkey to Russian roulette, what I was saying was you could hurt yourself very badly by taking that risk.
Yes, it’s true some people play Russian roulette and win the bet. But others do not.
The successful cold turkey-ers testify about how they got away with it, and good for them. The ones who failed are wandering the Internet — or going from doctor to doctor — begging for a cure.
If you’re unlucky and shoot yourself in the head, you could end up with problems much worse than being poly-drugged.
There is no cure but time for severe withdrawal syndrome.
Every single failed cold turkey who’s come to me for advice and support had every intention of winning the game. Each and every one thought he or she would have, at most, a few weeks of feeling lousy and then be finally free.
For a glimpse of the odds of successful cold turkey, see this study:
J Psychiatry Neurosci 2001;26(1):44–8.
[b]Abrupt discontinuation of psychotropic drugs during pregnancy: fear of teratogenic risk and impact of counseling. [/b]
Einarson A, Selby P, Koren G.
Abstract at http://www.ncbi.nlm.nih.gov/pubmed/11212593 with free full text.
Experiments in cold turkey are considered unethical because cold turkey is so thoroughly regarded as harmful. Therefore, observations need to be based on accidental cold turkey.
In the study, out of 34 women who quit abruptly
• 26 (70%) reported physical and psychological adverse effects
• 11 (30%) reported suicidal ideation “because of ‘unbearable’ symptoms,” and 4 were hospitalized
An additional 3 women “used some form of tapering off. This tapering was unsatisfactory, however, because even these patient suffered from adverse effects.”
“One woman had a therapeutic abortion because she did not feel she could go through the pregnancy feeling so awful….”, another considered it.
Correct — severe withdrawal syndrome caused 2 of 34 pregnant women, who had quit antidepressants to protect the babies they were carrying — to consider terminating their pregnancies.
As before, I respectfully and strongly disagree with your position that there is no one way to come off psychiatric medications. If you can manage it, there is only one way — that is to taper at a rate your nervous system can tolerate.
If you are a person who happened to have been successful at cold turkey, you were lucky. Unless you have developed an ability to predict the future, please do not urge others to take this risk.
(If you still insist cold turkey is a “right,” I invite you to join my site, SurvivingAntidepressants.org, and provide emotional support for the people who are suffering from cold turkey gone wrong.)
I am sorry to take this politically uncorrect position yet again on MadinAmerica.com. I am sorry that the prison of psychiatric treatment isn’t easier to escape. These drugs are pernicious from start to finish. It’s hard to get free. That’s just the way it is, and it does no good to anyone to pretend the reality is otherwise.
Yes, you and I have different perspectives on this matter, despite the fact that we both agree that cold turkey withdrawal can be incredibly disabling (I know this from firsthand experience, as I’ve written about several times before— a hospital stopped me cold turkey on 3mg of Klonopin, 30mg of Lexapro, and 200mg of Lamictal, just cut down from 400mg of Lamictal, and it was literally the most painful, excruciating experience I’ve ever had in my life). Contrary to what you implied in your post, I have also had extensive experience supporting people who are suffering from cold turkey withdrawal over these last two years.
I’m not speaking as much from a “rights” perspective (although I do believe that a person has a right to come off in whatever way he/she decides), as from the perspective that you effectively articulated yourself: that people should “taper at a rate your nervous system can tolerate.” While I know you’re speaking explicitly about tapering here, I think the key to what you’re saying is that everyone is different, and can tolerate coming off at different rates. I tolerated coming off of 5 psychotropic drugs in 5 months. Greg Benson tolerated coming off rather quickly himself. Other comrades of mine tolerated coming off rapidly, too. As I’ve made clear numerous times before, other people decide to take longer, in some cases, years longer, because it’s what they feel they can tolerate. You’ve essentially made my point here, Alto— there is no one right way to come off of psychiatric drugs; it is dependent upon what each individual person can tolerate/wants to tolerate. For some, that means a long, slow taper, for others, not.
I am sure that there are many, many, many people out there in the world who have successfully come off of psychotropic drugs rapidly and gone back to their lives. We just don’t hear about them, because they’ve done exactly that— gone back to their lives. We usually hear the war stories, the struggles, the pain. These stories are so very important— don’t get me wrong, I have one of my own— but they might not be the majority of psychiatric drug withdrawal experiences. We just don’t know. I think it is incredibly important that the psychiatric drug withdrawal process not be one wedded to fear, panic, and dread. We need to see the whole picture, here, not just the stories of devastation.
I’ve learned a lot from you, and as I always say, am grateful for your contributions. Meeting you last fall was an important experience for me, and I look forward to our next coffee, which hopefully will be in the near future ☺.
With respect, as always,
Yes, there are anecdotal reports of successful cold turkey, and there are anecdotal reports of disastrous cold turkey. No individual knows what will happen in advance should he or she take the irrevocable step of quitting suddenly.
Although medicine has been indolent about adverse effects of psychiatric drugs in general and pretty much covered up the potential severity of withdrawal syndrome, its injunction against cold turkey has been consistent and universal. Why?
In the beginning, cold turkey was the way everyone was taken off SSRIs, which were assumed to have no withdrawal issues. When the results of cold turkey surfaced — that would be in the Prozac era — they were so horrific that researchers united in warning against cold turkey. (Another myth: Prozac is “self-tapering.”)
If you read the journal literature about withdrawal syndrome, such as that authored by Peter Haddad, you will see that researchers allude to severe “morbidity” from too-fast discontinuation. However, those cases are unpublished. The evidence has been buried, all that remains is the warning.
Not that what psychiatry researchers think has any weight in this crowd; I’m pointing this out because even psychiatry researchers who would much rather ignore the problem felt compelled to warn against cold turkey, it was that serious.
Now let’s look at the validity of anecdotal information. That is all we have, because medicine got bored with psychiatric drug withdrawal syndromes in the mid-2000s. Unless someone does an epidemiological study, it’s unlikely any hard statistics will ever be produced about the danger of cold turkey.
So you know people who did well, and we all know people who did not. You’ve taken 3 years to recover, I’m in my 8th year of recovery (it’s taken a very bad turn lately). You can look forward to a new life, I’m older and my life has been destroyed.
No one who hasn’t experienced severe withdrawal syndrome understands how painful and debilitating it is. A positive attitude can’t erase the minute-by-minute torture. It comes down to a will to live. Few people can grasp the prospect of suffering with no options.
If you say any which way of coming off might suit, you must also take on the moral burden of explaining what happens when the bet goes bad. Otherwise, you present the benefit without the risk.
(Also, if any way of going off might suit, why even bother collating a directory of practitioners who support tapering? Anyone can improvise their own way of going off and take their chances.)
This discussion, which has played out several times on MadinAmerica, makes me discouraged and angry. I run a Web site that is one of the few offering support for people with prolonged withdrawal syndrome. Other sites exclude them. Their situation, which I share, is tragic.
Laura, your formulation “there is no one right way to come off of psychiatric drugs,” which you use in your speaking and writing, unintentionally drives business to my site that, frankly, I don’t want to have.
It is no mystery that most people do okay with going off psychiatric drugs. There’s the famous “2 weeks of mild symptoms” — right up there with “the check’s in the mail” as one of the great lies — that most people quitting SSRIs are supposed to experience.
But some hurt themselves very, very badly by going off too quickly. Perhaps Russian roulette is too romantic a metaphor. A better one might be having sex with strangers. Not every incident results in HIV infection; the risk is estimated at about 1 in 200 encounters.
That’s right — that’s what a huge worldwide public education campaign has been about, a campaign that’s changed the sexual behavior of millions of people, some of whom were quite resistant to that change.
Why, if the risk is only 1 in 200, are people urged to always use condoms? It’s because the outcome of a bad bet is so drastic. Taking precautions is important not because of frequency of infection but magnitude of damage.
I have absolutely no doubt that severe withdrawal following cold turkey occurs much more frequently than 1 in 200. Of the pregnant women I mentioned above, 30% reported “unbearable” symptoms and 12% ended up in the hospital. (What do you think happened to them there? If they were really, really lucky, their antidepressants were reinstated. Back to square one.)
That’s why encouraging people to taper to prevent withdrawal syndrome is so important. You only have one nervous system, and it’s not made of rubber.
And that is why I take exception, yet again, to your “each to his or her own” position. You are hiding the risk of withdrawal syndrome to make a rhetorical point: One can be free of psychiatric drugs. I agree with you on that, but I wish you would encourage people to taper rather than include cold turkey as just one of those preference things.
You say, “If you say any which way of coming off might suit, you must also take on the moral burden of explaining what happens when the bet goes bad. Otherwise, you present the benefit without the risk.” When and where have I ever suggested that a person just come off however they feel like without educating themselves first? I really don’t get how you’ve read that into what I’ve written. I am always clear that awareness of all the risks and benefits of various ways of coming off psych drugs is crucial. Your last line— that I am “hiding the risk of withdrawal syndrome”— is a complete misrepresentation of what I’ve said. Never have I once hidden anything about the risks of cold turkey withdrawal. I speak about them always and often, including in my piece. Please do not misrepresent my words like that.
I do not understand how you or AA have somehow read in my writing that when I say there is no right way to come off, I mean that cold turkey is just fine. I have been clear from the start that cold turkey was a disastrous experience for me and many others I know, and that I never suggest it to those who reach out to me for support. Based on what you said— that people come off at different rates based on what they can tolerate— I just don’t understand how you can disagree with my point: people come off successfully at very different rates. This is not my opinion, but fact, fact that you acknowledge.
To answer your question about whey we’re “even bothering” to create the directory: my personal opinion is that a person does not, in fact, require a provider to successfully come off of psych drugs. The MIND UK study, which you are aware of I’m sure, shows that people are just as likely to successfully come off without a doctor’s support as they are with, and that psychiatrists are regularly seen as the least helpful people involved in the process. However, I think it is still important to have whatever resources we can bring together available for the public, especially because most people assume they need to have a provider’s support to come off, when this doesn’t have to be the case for everyone. When we launch the directory, I will write more about this— that having a provider is not a necessary part of the coming off process, but that it’s one option that can facilitate the process and provide added support. Of course, things get complicated without an MD when it comes to prescription dosages for tapering, but beyond that, I truly believe that the profession as a whole has very little expertise on the matter.
Lastly, I think the percentage of people who frequent withdrawal forums is likely small in the grand scheme of those who are coming off of psychotropic drugs. To assume that you know the capital- T Truth about the withdrawal experience because of what you’ve seen at SurvivingAntidepressants is, in my opinion, a fallacy. I say this with the utmost respect to you, because I think you work really hard to help people, and have built a powerful community of support. I know that you’ve suffered tremendously at the hands of Psychiatry, and it pains me to hear your story. None of what I say here is intended to dismiss you, or your work. Rather, I think it important to look beyond what you see in forums, because I’m sure there are many people out there who’ve come off successfully in a variety of ways without stepping foot in an online forum.
I’m not trying to change your mind about anything; what I am asking, however, is that you stop misrepresenting my words, because your interpretation of my message is inaccurate, and, to be honest, borderline offensive (particularly where you claim that I “hide the risks” of withdrawal.) I have tremendous respect for you, and would never warp your words to suit my needs.
Thank you for the work you do; it is very important, and much needed.
With complete respect,
Laura, this is the fourth or fifth or sixth time I’ve heard or read your phrase “There is simply no one right way to come off psychiatric drugs.”
Each time my reaction is the same: You have carefully formulated this phrase not to exclude cold turkey as a way to come off psychiatric drugs. (As I have discussed with you.)
What would it cost you to change this to “Tapering is the safest way to go off psychiatric drugs. Don’t cold turkey if you can possibly help it.”? Why do you deliberately and repeatedly give tacit approval to cold turkey? Is there a cold turkey lobby?
According to the HIV analogy, here’s your logic:
– There’s no one right way to have sex with strangers.
– Some people don’t get HIV when they have unprotected sex with strangers.
– Having unprotected sex with strangers might be perfectly fine, if that’s what you prefer.
What’s missing: Some people do get HIV from unprotected sex with strangers, and HIV is such a serious condition that you will take precautions against contracting it.
(For what it’s worth, Will Hall ran aground on the same argument here https://www.madinamerica.com/2012/11/medication-withdrawal-or-medicationtapering-a-harm-reduction-approach/ )
Seriously, who wouldn’t prefer having carefree, unprotected sex with strangers? Who wouldn’t prefer cold turkey off psychiatric drugs compared to the work of tapering?
People hardly need permission to cold turkey. They do it all the time. Nothing stops them — they don’t bother to educate themselves (until it’s too late). They hear stories of successful cold turkeys and they think great, I’ll do that too.
Maybe they secretly think if they get hurt, some nice doctor will give them a pill that will fix them right up.
Then, ouch, it doesn’t go so well. But unlike HIV, there is no medical support for withdrawal syndrome and darn little other support. Even in a community such as MIA, a person with withdrawal syndrome will be a pariah, because everyone here wants to believe you can simply go off psychiatric drugs if you want to change your life. Withdrawal syndrome is a reminder that it’s not so simple.
As long as you use “There is simply no one right way to come off psychiatric drugs,” in your speaking and writing, giving tacit approval to cold turkey, we will be working at cross-purposes.
By the way, what I said above was “If you can manage it, there is only one way — that is to taper at a rate your nervous system can tolerate.” By definition, cold turkey is not a tapering method, any more than black is white.
Altostrata, let me preface this comment by saying what an important resource your website is and how helpful it has been for me, even more so than books by Breggin or Will Hall’s Harm Reduction Guide. Personal narratives are so much richer than simple statistics or a few generalities; anecdotes are way underrated, especially when there are hundreds of them.
I don’t think Laura’s position is to deny the risks of cold turkey. Nor is it that the knowledge of risks should be withheld from persons considering discontinuation. Her point is that, ultimately, it is a personal decision.
I’m not sure what your position is. Is it that persons going cold turkey should be somehow fined, like in some jurisdictions motorcyclists without a helmet?
If the discussion is not about fundamental rights, then we are left with speculation about how risky cold turkey really is because of lack of quality statistical studies and of how stern the warnings should be.
You can encourage motorcyclists to wear helmets backed by all the statistics you want. In my state, where it is not illegal to use them, I don’t need a DOT study to know that a significant percentage of riders don’t. I wouldn’t expect anything different from (prescribed) drug users in their withdrawal. Who am I to tell them how to live or what risks they should take?
Oops. I meant it *is* legal not to use them (helmets).
My position is that people like Laura and Will Hall, who are sometimes in a position to influence large numbers of people in their speaking and writing, should not encourage cold turkey, implicitly or explicitly, because cold turkey is dangerous and creates lasting injuries.
I’d rather people be cautious in going off drugs so they DON’T end up on my Web site.
The warnings about cold turkey are already quite stern. This is what they amount to: DON’T DO IT.
This is one warning from the medical establishment that everyone on MIA should be supporting and yet it’s an uphill battle. Why?
Nothing in Laura’s writing has ever communicated to me that she advocates going off medication abruptly. She is simply acknowledging the fact that people will, whether they are educated about the risks or not. I admit to doing it with a couple of my psychotropic medications, simply because the side effects were so debilitating. I admit that it wasn’t a good idea to do without knowing what would occur, but I was not exactly in a reasonable place (due to the effects of the medications). And thankfully, I did not suffer too much from withdrawal. I consider myself to be quite educated, but let’s be honest here . . . there is no clear or general guide about how these medications affect people – going on them, staying on them, or coming off of them. While taking them, many practically lose their minds, and you could argue that they lose the ability to make a wise decision about quitting. Therefore, to spend so much energy trying to get people to be reasonable, when the drugs themselves aren’t reasonable seems quite ridiculous to me.
I think the focus should be on what types of support people have in their lives when they are trying to come off of these medications. Who are they connecting with, and what resources to they have? I have worked with hundreds of people considered “seriously mentally ill” in my community, and it has felt the most helpful to connect them with people who understand them and who they can trust. If I had tried to tell someone on five different medications not to stop “cold turkey” that would have had little to no impact with those I worked with considered most severely impaired by their “disorders.” It is clear now that most of them were most impaired by the medications themselves.
I am interested in learning more about what people are doing in their communities to prevent the serious effects of stopping medication quickly. I definitely agree that going off medications abruptly should not be advocated or glorified.
Altostrata, It is good to put things in simple terms as in DON’T DO IT. I respect your position like I respect the ER doctor who on a weekly basis tries to save the lives of maimed motorcyclists and wishes that motorcycles were outright banned. From a medical perspective, recommending excessively rapid discontinuation is malpractice.
Will Hall and Laura Delano do not take as categorical stance as you do. Both effectively did cold turkey themselves and they are aware, as you should be, that the proportion of people that succeed at cold turkey is not negligible. Both agree with you that a significant proportion of people who do try cold turkey suffer long term consequences. Neither reject your Russian Roulette analogy. But to allege that they are recommending cold turkey, either implicitly or explicitly, is wrong. Laura has reason to take offense. Your reaction when someone doesn’t agree 100% with you, is not justified.
I don’t know what Will Hall is saying in his public speaking these days. His post on MIA (linked in my comment above), uncharacteristically muddled, showed a great deal of ambivalence about cold turkey.
Yes, I do believe people who are speaking and writing for audiences who might be considering going off their psychiatric medications should be UNEQUIVOCAL about cold turkey.
I’ve given many examples of how to consider the risk. As I pointed out in HIV transmission, for any one unprotected sexual encounter, the risk is approximately 1 in 200. And yet what gay activist would be suggesting if people feel like having unprotected sex, they should go ahead and do it?
(By the way, in the early days of AIDS, there was quite a bit of resistance to the idea that one should always use protection, with the same kinds of rationalizations. In the general population, there still is.)
We are all horrified by the prescribing of psychiatric medications to pregnant women, yet in truth, the absolute risks to the developing baby are much, much smaller than the risk of damage after cold turkey.
For example, the risk of an autism spectrum disorder after valproate treatment is put at 4.42 percent according to a recent study http://www.medicalnewstoday.com/articles/259597.php
Translated to psychiatric medications, this means Laura might meet 96 people who got away with cold turkey before she meets 4 who didn’t (if they were able to get out, that is).
What this conversation demonstrates is the inability of even intelligent people to grasp the idea of medical risk. It’s not a majority vote.
Laura and others should take this as a caution against making assumptions that their audiences 1) will do any research in the risk of cold turkey; 2) be able to assess such information about risk if they do find it; and 3) make logical decisions about going off psychiatric drugs.
I regret very much pounding on Will and Laura about this, but I believe the stakes are very high. People need to be reminded about how dangerous it can be to go off psychiatric drugs suddenly — they’re inclined to do it anyway. They don’t need additional approval or permission for a risky action.
Alto, I happen to agree with your position about a strict protocol for minimizing the risks of severe and prolonged withdrawal syndrome. And I agree that it should be promoted vigorously, like the anti-smoking campaign or safe sex. I don’t have a problem if you badger Will about being muddled or Laura about being wishy-washy. But I believe when you cross the line and accuse them of promoting cold turkey, you’re damaging your credibility and doing a disservice to your cause.
Thank you for your support, PC.
Suppose I were an AIDS activist speaking to a crowd of sexually active people. Someone says, “Is it really crucial to use protection every time you have sex with strangers?” Suppose I answered, “Well, a lot of people have unprotected sex and do not get infected. It’s up to you to decide.” Would I be promoting unsafe sex?
Saying “all people get infected” – which is a lie – is worse than saying “a lot of people don’t get infected *and* a lot of people do get infected” – which is true. Not that you’re doing the former, but Will is doing the latter. The critical parts to doing the right thing are a) “you decide” and b) all the available and pertinent information is facilitated, even if sparse or contradictory.
First of all, no self-respecting AIDS activist would say “you decide” when it comes to unprotected sex, except sarcastically.
With HIV/AIDS, an intensive world-wide health education campaign has done a pretty good job of telling people what will happen if “you decide” leads them to unprotected sex.
After many years of horror stories, they have been scared out of their pants and into condoms.
This was not facilitated by AIDS activists being wishy-washy with “sparse or contradictory” information — even when information was sparse and contradictory — or offering a libertarian “you decide,” but AIDS activists uniting and giving an unambiguous message: “It’s dangerous, don’t do it.”
Can you tell me how the general public is being educated about the dangers of cold turkey or too-fast discontinuation of psychiatric medications? Has the worst-case scenario been made explicit? Most doctors will deny it.
If you think people know what’s in store for them with severe withdrawal syndrome, read 10 of these stories http://tinyurl.com/3o4k3j5
What a triumphant reflection on the past few years! I can’t wait to see the new directory and thank you all so much for taking the initiative to make that happen. It is going to be such an important resource.
I’m so glad you’re out there, doing what you do, being who you are. It’s amazing, the transformation that takes place. There is nothing more beautiful nor more human than becoming who we are in spite of what we are told we might never be.
Hey, Laura, the other day I did a quick off the top of my head tally of the folks I am aware of who were put into the psych system prior to age 18. I could think of a fair number…but, not so many considering all the kids that have been affected.
Where did they all go? Where are all the other survivors?
I can’t wait to read your book…and I hope that some of the adults who were kids in the system read it, too.
Thanks so much for this comment! Really means a lot to me. It’s been so wonderful getting to know you since you posted your story here way back when. To be honest, I can’t remember when that even was, as time has moved in such unpredictable ways in the last couple of years! The new launch of MIA in January 2012 feels like ten years ago!
You ask such an important question: where are all the psych survivors who were thrown into The System as children? I agree with you fully that there are many more out there than those we are aware of. I wonder if many of them just got out, without ever connecting to the oppression/liberation framework in which they were a part, or realizing there was a community to go to. Maybe they just felt annoyed with their doctors, or with the drugs, and they got out, not realizing that they were never “mentally ill” in the first place, but just wanting nothing to do with The System anymore. If so, awesome for them!
I feel this same way about people who’ve come off psych drugs— I believe that many out there just got off, and went on with their lives, without connecting to the psych survivor community.
But going back to your question about what happened to the kids who were thrown into The System young… My greatest fear, of course, is that today, they’re going through the motions of life in their twenties, thirties, forties, fifties, and not much above that, with obesity, diabetes, serious cognitive damage, life-long disability checks coming in the mail, in group homes, with families who’ve abandoned them, and so drugged up that they don’t even remember they were once human. All of this, of course, the direct result of Psychiatry. That is my greatest fear, and while I have no doubt that’s happening around us as we speak, by the many, many thousands, I really do hope that there are tons of ex-patients (maybe they don’t think of themselves as “survivors” because they don’t realize the The System was something to survive?) out there who are free.
I’m curious to hear the tally you came up with…
So grateful to know you and to know that your voice is out there in the world through your writing, your art, your speaking, your advocacy ☺.
Thank you so much for sharing your story… you are so brave and I have learned so much from what you wrote. I also so appreciate your nonjudgmental attitude of how we all need to find what works best for us and that one size definitely doesn’t fit all. Victor Frankl’s quote at the end is one of my favorites. Bless you and thank you for all that you are doing to heal your own self and others.
Hi. I am a 32 year old women who has been on meds for severe anxiety and panic disorder with severe panic attacks since I was 16. About 2 months ago I decided I wanted to go off my meds. I wanted to find out who I was without pills. How I felt without pills.The way I felt was that my psychiatrist was just throwing pills at me at this point like hey try this or lets up this and down this and add this. I felt like an 80 year old women with my weekly pill containers. I figure with the amount your brain changes between 16 and 32 I didn’t know who I was without prescription drugs. I have successfully come off of zoloft and Lomotrogine so far and am currently coming off of Clanozopam and then I have 2 more after that. I am doing this with the support of my psychiatrist, my family, and my wonderful boyfriend. I am not saying that I won’t need meds ever again. I don’t know yet. I just want to find out. To find the me without pills and give myself a chance to feel the feelings I need to feel to see what my next step will be. Its hard both physically and emotionally and sometimes I want to give up but I am trying to get through it the best way I know how…Lots of sleep lol
When I was 16 I was hospitalized after a suicide attempt. The first night there, before any doctor even saw me, I was put on an antipsychotic and an antidepressant (TCA, this was in the 70’s). I had a severe adverse reaction but I was forced to continue taking the drugs. Over the next year and a half I was on a half dozen antipsychotics, an equal number of antidepressants, a drug for sleep, and a drug for the side effects of all the other drugs. Shortly before I turned 18, I left the doctor’s care and left my abusive home. For the next 20 years I rejected all psych meds. Then, for many reasons, I agreed to take one of the amazing new antidepressants that were so much safer and had minimal side effects. I had a severe adverse reaction, becoming hypomanic, but since the doctors didn’t recognize it as such, my dosage was increased. I became unable to function and ended up on disability. Over the next 25 years a whole pharmacy of drugs was added, mostly to treat the side effects of venlafaxine. Today I am 61 years old and have re-started tapering the venlafaxine. I’ve already tapered the pregabalin down to 25mg from 300mg, the buspirone from 120mg to 30, the zolpidem from 10mg to 5. There are other meds but they’re on my back burner.
I’m 61. I’m doing this come hell or high water. That said I keep wondering, will I have any healthy years left in my life to follow my dreams.