mattcolburn, Interesting how those science courts in history never work out……currently Peter Goetzshe MD just got kicked out of Cochrane. They caved in to “public perception”. So much for them being the independant court on drugs and medical devices. Expecting justice from human beings is problematic.
Here is an example of what you will find on TrueHope, this is the formula to which both of us reacted badly. Interestingly, I suggested in emails that I had a problem taking anything with B6 in it, and Teresa ( supposedly The “Medical Director”) talked me into taking it, assuring me that it is essentially safe for all human beings dependent on dosage. Anyone who knows anything about drug withdrawal knows that isn’t true, many people react badly to different vitamin cocktails. For this reason, many withdrawal groups have warnings about supplements. https://psychcentral.com/blog/truehopes-confusing-message-empowerplus-q96-claims-to-treat-bipolar-adhd-depression/
Good afternoon Out, You got the facts right, I believe I included plenty of information for you to follow up on, should you desire. The unsupportable claim is that mental illnesses are determined by nutritional deficiencies. A woman who is given the diagnosis of whatever (Schizophrenia/Bipolar etc) after years of abuse does not recover because she is given a vitamin cocktail. This is the old argument between the Psych professions regarding causation. The ironic thing is that I agree with TEDx, but not for their reasons. Ruckledge’s work may have many positive contributions to the field of nutrition. My concern is a lack of accountability tainting research results, and a continuation of systemic abuse.
Dear J Doe, Thank you for this excellent article. It is a major contribution. My psychiatrization also began with Xanax. It was “safe and effective”…..so I was “mentally ill”. How many millions?
In response to the person who asked “Where is the outrage”, I would answer that outrage is the new normal….which means most people don’t feel triggered to act……fear immobilizes. I take a different view of what’s going on. The writing is on the wall for the end of the pharmaceutical industry because of 3-D printer technology. Patents have run out, or they are running out, and the drugs are being exposed. In Europe more change is taking place; moving away from diagnosing, recommending low dose short term first break intervention….from the standpoint of Bigpharma, all this spells the end. They have the American public in thrall, whipped up into a frenzy over mass shooting….this is Disaster Capitalism. The court systems’ reliance on psychiatry gives the special interests that control our govt the safest way to get as many of these drugs into as many people as possible. Force ’em before everyone figures out what’s happening…….so while we sit here and discuss how little therapeutic gain is to be had, what all this is really about is money. The American public is the perfect target, and not even a moving one.
Fred, Thank you for such a beautiful tribute. I remember how much Bonnie wanted to something with an RV! She had so many, many great ideas. I don’t think many people realised how sick she was. Even back when I first met her in 2009, she had crippling arthritis. It’s so gratifying to hear you say that she changed your perspective on activism. I’m going to quote you on activism, no one could have said it better. Again, thank you. This is exactly what I was hoping might happen……and it is really quite amazing that I’m sitting here writing to people I actually know quite well in important respects, although I don’t know you outside this forum, I do know Judy, and Maria, even Frank from several other organisations and this feels like community. This is good.
When I read Psychiatric Times, I often put myself in the position of being a first year resident, or a medical school student. What really strikes me is how often “anti-psychiatry bloggers” are mentioned and how they are discussed. I can’t imagine anyone coming there and thinking, “Gee, how well reasoned and fair this is. Well, of course, because this is Psychiatry and it’s all about understanding people”. The tone is decidedly eighth grade. “She said this about me, how dare she say this about me. I’m not talking to her or her friends at lunch, and I’m definitely not texting her anymore, so there”. I suspect the effort to enlist more psychiatric residents may well be increasingly difficult.
Y’ALL, Here is another disturbing line from the press release; “The Skills for Life program also includes two other major components – mental health promotional activities in all schools and referrals to mental health specialists for children with the most serious problems – which were not the focus of this study. ”
If I am not misreading……….what does “which” refer to; the children, the serious problems? It sounds like there was a washout of the kids considered to be most troubled. But the wording bothers me…….what was not the focus of this study? This is really seriously scary ground…..
Agree, AA, and Stephen Gilbert. The key phrase in the press release is “there is evidence that non-pharmacologic can be effective”. Inherent in that statement is that drugs are the first line of “defense”. Also buried in the press release is a statement about how this will serve as an opportunity to refer children to specialists. Interestingly, just this week a young adult from Chile contacted me regarding seroquel withdrawal. This person spoke at length about the lack of drug awareness in Chile. I see this development as being very similar to the Chicago Boyz’ coup………a major human disaster.
Dear RichardFleming, Thank you for taking the time to write about your experiences, I hope you will continue to contribute…perhaps even submit a blog? This community gets richer and richer…..
Really B? It’s the opposite for me. This chills me to the bone. Sandy Hook (Newtown) served as the perfect disaster capitalism of Bigpharma. Columbia University’s admission of a false positive rate of 80% on Tennscreen is lost information. The horror of this….the trajectory of massive numbers of teen psych drug hangings from akathisia makes my blood run cold.
Dear humanbeing, I always enjoy reading your comments on various articles, and I think your moniker represents you well. I had to laugh when I read your comment because someone asked me the other day “how” I write, and I answered, “It is often something akin to vomiting”. So people can say this is well written, but I think you have my number.
Hi Fred, I’m very interested in doing workshops and presentations, I would love to do something with Ted. The limiting factors for me are money, travel, drug withdrawal and nerve pain. As most people who have read my first article, “After Seroquel”, know…..my eyes are very painful. I can’t simply “look” at a link or explore an opportunity without help from other people, I think these problems can be worked around, though, and I most definitely see a future in doing presentations.
Hi B, I am a consumer of Chiropractic, Acupuncture, Homeopathy (which is not placebo, and most homeopathic experts would be very disturbed to hear that a practitioner is suggesting that it is ), and Naturopathy. They most definitely are against many things like poisoning oneself, and ignoring causes in favor of treating symptoms. Tell sixteen year old Cassandra, whose family chose natural treatment for cancer and lost custody, who is being forced into chemotherapy in Connecticut against her will and separated from her family…….feel free to tell her, her family, and all the activists organising on her behalf, that only psychiatry oppresses. Still, thank you for your comment.
I meant Point well taken, acidpop5. Chrisreed, you name a very real issue, the problem is, as always, what will fly in a court of law. At PsychRights, we have taken medicaid fraud to federal district courts of appeal, and essentially the response has been, “The government knows about the fraud and doesn’t care”. I am ever hopeful of change but it is going to take more lawyers, more recognition of the need for change, and more whistleblowers.
Thank you for this wonderful article, Tina. I’m encouraged to see this in Mad In America, especially because of an article I wrote two years ago called, “What Do Psych Survivors Want?”. Long story short, after polling a number of groups, the answer clearly came down to two things; validation that they/we are torture victims, and restorative justice. MIA would not print this article, but the The Journal of Critical Psychology, Counseling, and Psychotherapy (published in London) did. I am very encouraged to see that MIA is getting somewhere on this critical issue. It is not enough for Psychiatry to admit to misleading the public, and reform coercive practices. Some people write about about the “social harm” that Psychiatry has caused, but I find this to be essentially a euphemism. A way of avoiding the naming of the reality that crimes against humanity have been perpetrated against persons. Persons with rights, involving the rights of redress. Thank you Tina.
Dear DanielleZ23, Thank you so much for writing. After seroquel, I went into to interdose benzo withdrawal, wound up switching to Klonopin and beginning a liquid taper. I’m still tapering from 1.5mgs, down to .8. My advice to you is to switch to liquid taper. When we dry cut, we lose control of the amount of the drug we’re getting, and as you now know, every tiny bit counts. Liquid tapering with micro cuts daily allows the body to heal at the rate of withdrawal from the drug. My current daily taper cut on Klonopin is .00625 mgs. That means that it will in the end have taken me many years to accomplish this, but it assures that I’m going at the rate my body can handle. I also want to share with you that diet makes all the difference in the world. In the closed facebook withdrawal group I have been in for the last two years, almost everyone is on the paleo diet. Eating organic, eliminating processed foods, and getting grains and legumes out of my diet (carbohydrates) has made a huge difference. There are many paleo websites. Many people report that paleo resolved insomnia for them. For myself, I couldn’t really say because of many other things I’ve done. Acupuncture also helped me enormously. Whatever you can do to improve your general health and immune system is going to support withdrawal. Don’t lose hope, I have seen so many people recover.
Hi Keren, I hope you will receive this note. When I wrote this article in 2012, I believed in the 10% rule. After three more years of study, I emphatically do NOT. Yes, 10% cuts work very well for many people, but many people become disabled by 10% cuts. Liquid titration allows you to listen to your body and find the cut that doesn’t throw you into severe withdrawal symptoms. Everyone is different.
Deargodlovesme, I have just read your post of a year ago, and I want to thank you for sharing your story. I appreciate that this approach has been helpful to you, and I think it’s important that people have informed choices. I did not. I was lied to. Many people are, and you have been fortunate to be able to make this decision with real information available, and without coercion.I hope you are able to support your body through diet and supplements while taking these drugs, and that you have a safe withdrawal plan in place for when you are ready to come off. I recommend the site Beyond Meds as a good place to start.Best Wishes for a healthy future.
Thank you for your thoughtful reply. If I can be of service helping you find someone, PsychRights does compile a listing of vetted “safe practitioners”, and I also have access to The International Society for Ethical Psychology and Psychiatry. The thing is, the real gold is the place where you tire. Where you want to quit. That place where you feel disempowered, violated or “f-ing confused”. Confronting that with someone and moving through it, instead of abandoning ship; that is the messy place where the real work gets done. Essentially, every relationship we have is a mirror of the relationship we have with ourselves. A friend of mine, a Jungian psychoanalyst calls this work “following the red thread”. His name is Michael Anaavi, and he has a book available on Amazon called “The Trusting Heart”. Michael looks at the places where we disengage, the moments where we move to avoid, or distract. Those moments in time often hold the key to moving through obstacles. Because it is relationship that you speak of; the way you perceive your relationship with your mother, “real friends”….these are issues better understood through exploring relationship, and a “therapeutic” relationship could really be a great way to do that. On the other hand, being realistic, “therapy” is not for everyone. There is an inherent perceived power differential, and power is something you have been talking about. No matter how you shuffle the cards, one person is getting paid, and one isn’t. One person is perceived as “having it together” and one isn’t. For many people, including myself (as a matter of fact), that power differential is insurmountable. Life is difficult for everyone, and I appreciate your willingness to be vulnerable. Vulnerability is the requirement for courage. Here is my last word on the drug issue. You will hear many people taking drugs talk about how much they are being helped. You won’t hear the perspective of the people who live with them, or what becomes of them later on, or when they try to withdraw, or encounter unwanted coercion and dependency.. You will hear people talk about how they were successfully helped for a period of time, but you won’t know whether you will be lucky enough not to wind up in a horrendous protracted withdrawal. And the bottom line is that your emotions, difficult as they may be, are yours’ to work through. On mind altering substances, your thought will be altered. Thank you for considering what I have to say, if you would like to contact me for any resources, my email is [email protected].
I was trained as a psychotherapist at Tufts University, I write for The Journal of Critical Psychology, Counseling, and Psychotherapy, and counseling is the large part of my job as Educational Director and Volunteer Coordinator at The Law Project for Psychiatric Rights. I do not receive any compensation for the work I do, other than the great satisfaction of being of service. I do not counsel people online. I do however, connect people with resources online. You are welcome to report me to anyone you like, if that makes you happy.
I agree with you that in the difficult risk benefit analysis, that taking seroquel or another antipsychotic can be the best choice under specific circumstances, and I defend an individual’s right to make that choice freely. Some of the people I support have made that decision, although reluctantly, but in nearly 100% of those cases they recognise that had they not been drugged in the first place things might well have been very different. There are far better alternatives. Brain changes that take place when people are drugged are often irreversible.
I have zero tolerance for people coming to this forum, specifically the forum of an article that I have written, and suggesting that people contact them to recommend taking drugs. If you don’t like that, you are free to leave.
The fact that seroquel is a toxic drug is indisputable, not my opinion, not my emotion. If you are interested in my feelings and emotions, I wish that drugs that gave people relief were not toxic.
I hope that you are indeed one of the lucky ones who are able to discontinue seroquel without consequences, but after five years of listening to people who have come off seroquel at the level you were on (900mgs), my experience has shown that until you have been off for three months you will not know. Some people get into trouble six to eight months off. There is no research, only those of us in the trenches hearing from people in large numbers.
On the subject of seroquel and suicide; seroquel lists suicide as a side effect. And that was the effect that all psych drugs had on me personally, they caused me to have suicidal ideation, which I had never before experienced. My journey with psychiatry began with being prescribed prozac during a divorce, and my adverse reaction ascribed to a bogus underlying neurodegenerative disease which I must have had ” because I was an artist”.
Mad In America is not my website, I am a contributing writer. This is my article. It is a place where people are safe from being lied to about diagnoses and drugs. It is a safe place for people to express themselves without being labeled. You have attempted to have someone contact you for the pursoe of convincing them to take a drug, and you have labeled me “mentally ill”.
Regarding your calling me “mentally ill” and “in need of medication”, I sincerely suggest that you reconsider this attitude towards anyone or consider another field of study.
Dear Chendri887, There is no such thing as someone who “benefits” from a neurotoxin without side effects. The side effect is a shortened lifespan. That is the unfortunate reality of what it means to take a toxic drug. Eventually it will kill you. Some people do choose to do this, I hope you will not be one of them. All of the issues that you are talking about are things you can work on in therapy, if you can find someone you are able to trust. What I see as the obstacle is your sense that anyone would reject you if they understood how powerful you could be. I honestly don’t believe that is either a true statement, or even something that would be possible for you to know about someone else. But I can only speak for myself as a therapist (an unlicensed one). I work with people because I want them to be successful. I benefit personally from witnessing the journey. I want them to find what they are looking for, become the people they want to be. I support their process. And I truly believe that most people who become psychologists or therapists feel the same way. I am not afraid of anyone being more powerful than I am, or doing somthing better than I do, because life is not a competition. There is room for everyone to be the best that they can be, to make the choices they want to make. I hope you will consider the double bind you have put yourself in. On the one hand you feel horrible about yourself and are filled with fear, and on the other hand you harbor feelings of superiority. I don’t think any amount of pharmaceuticals is going to bury this conflict, and I urge you to look straight into the fire and untangle this difficult quandry. Best Wishes.
Thank you Dizzi, I took my 97% stat from a vascular surgeon, and the cornea stat from the Boston Center for Sight. I am no expert on either subject. I believe the 97% stat was in regard to serotonin, but on both subjects I defer to the more educated. Regarding “research your disorder thoroughly”, I’m sorry but that is nonsense. There is no science on any of these so-called disorders, on that account, I hope you will apply your considerable intelligence to getting to the bottom of that. The idea that “Bipolar Disorder” is a life long illness is pure propaganda that protects the pharmaceutical industry from the blame of creating chronic customers. Every year thousands of young people have a singular manic episode for a variety of reasons, and only those who are “guided” into psychiatry have this “lifelong illness”. If everyone who had one or two manic episodes and then went on to a successful and productive life came out of the closet, the field of psychiatry would have to raise the white flag and disappear.
You may, but I will be straightforward for the benefit of other readers. There is enormous controversy regarding supplements in withdrawal. James Harper is a nutritionist who denied for many years the existence of protracted withdrawal syndromes, and continues to adhere to a one size fits all approach. I can no longer recommend his book. I can share what I have done, but I would have done differently, so I’m not sure how helpful I can be. Still, I am happy to connect with you at [email protected]. The safest approach, in my opinion, is to work with a good Naturopath who is knowledgeable or willing to learn about psych drug withdrawal, who can test for both deficiencies and food sensitivities. Beware any group that benefits from the sale of supplements, including Point of Return. I hope this helps, Mino1………time is the best healer, and eating an organic low carbohydrate, high fat diet. Best book; Grain Brain by David Perlmuttter MD, nutritionist and neurologist.
When Richard points to these particular diagnoses as scarlet letters, I feel the need to underscore that. Timothy Kelly may be blind to the reality that holding up a signs that says “I have Borderline Personality Disorder” is exactly the same as holding up a sign saying, “Stay far away from me, I will wreak havoc”. Holding up a sign that says “I have Bipolar Disorder” translates to , “I am Dr Jekyll and Mr. Hyde and I may murder you in your sleep”. There is no excuse for this kind of labeling, none at all, and convincing vulnerable people to identify in this way is the worst possible brainwashing I can even imagine. Brainwashing like this always serves someone else’s agenda, and an agenda like this must be fought tooth and nail. Bravo Richard Lewis, for your well reasoned arguments, your wonderful historical context for the fight against oppression, and thank you for the mention.
Hi Timothy, Thank you for your excellent article. I also really appreciate the discussion. My take on this is that while everything you discuss here about analysis and psychosocial understandings is relevant and critical, there are larger forces at work, whose agenda is very different from yours’, mine, and ours’. To speak about the drugs as if we were really discussing inert chemicals is to obscure the reality that there is a powerful corporate agenda at work. A corporate agenda that laughs at these discussions because they provide distraction. Meanwhile, Thomas Insel makes clear to world leaders that “we” need to ferret out the brain diseased worldwide and subject one and all to our brand of “treatment”. This is not about concern for people, or questions about etiology, this is about market share and profit. I think it is profoundly naive to imagine that in this world of growing corporatocracy and oligarchy that the prevailing forces really are affected by anyone’s understanding or scholarship. They are not. It really does not concern the medical pharmaceutical insurance complex that more people are disabled. Captive audience. I have been covering medical kidnappings for three years now, as well as “child protective services” round ups of sick kids for pharmaceutical research, and they get bolder and more brutal daily. I support Ted C’s analysis that the focus on civil and human rights needs to take the forefront. Regarding the tone police, I hope you will ignore them as I do. The drive to tell other people how they should express themselves is not one that supports freedom of speech. Thanks again for your honest and thoughtful contribution.
Dear Sleves, I can’t find you comment where you claim that depression causes brain damage (the existence of Abraham Lincoln’s presidency alone would discount that possibility) but the fact is that the NIMH denies this. The NIMH makes clear that there is no gene, no lesion, no image to prove the existence of any mental illness (again not to deny suffering and/or altered states), and it is on the basis of this complete lack of evidence that Rdoc has the go ahead for billions of dollars in research. Allen Francis (co author DSM4) states that there is no reason to trust any research out there. This myth that there is evidence of neuro degenerative disease has been promulgated by drug companies, if you have proof otherwise, please post specific studies for the purposes of this discussion. The studies I have read claiming brain shrinkage and basal ganglia enlargement in “Bipolar Disorder” were done on people who had been drugged for years, and the recent studies on neuroleptics have shown exactly that; brain volume shrinkage and basal ganglia enlargement. Perhaps the rebuttals seemed intelligent to you, but to me they were desperate, filled with character assassination, and lacking in substance. The Boston Globe hired a Boston area pediatrician to do the job, and at Dartmouth psychiatric residents were threatened if they either read the book or attended a lecture. Intelligent? Hardly.
“failed the no medication experiment” demands several critical questions. #1 How long had the person been taking a neuroleptic, brain changes are observed after only a few hours in some people…..and the neuroleptics are documented to predispose to “relapse”. #2. Was the person withdrawn abruptly vs. being slowly tapered, discontinuation and withdrawal syndromes are routinely viewed as “relapse”. #3 what underlying issues were unaddressed; inflammation/allergies, nutritional deficiencies, actual pathologies (Lyme’s, etc)……The “no medication experiment” as undefined means nothing. Regarding “uncurable illness”…..I honestly can’t even imagine how someone could suggest this to another person without one shred of medical evidence. Might as well say, “you have an invisible illness, and it will never go away”…….umm, that is what you are saying. The selling of low expectations is a huge part of our burgeoning disability rates.
Dear Sleves, I have been reading these comments and I have come to the place where I feel you are disingenuous. I personally offered to provide you with resources to understand that civil rights violations of people diagnosed are endemic and a matter of course. Your choice was to ignore that continue to make fallacious claims about the legal system. The reason I am responding today is that I am offended by your invalidating response to someone here. You wrote,” I haven’t witnessed antisocial personalities in the mental health field so far. I’m sorry that people here report that they have.”. This kind of invalidation (“people here report”) is very telling, and of the kind psychiatric survivors can spot a mile away. This is not a personal forum for you to face your own cognitive dissonance. Many people, including myself, have reached out to you and offered educational opportunities and resources. Please take advantage of those. I assure you that once you do, you will look back on this conversation with some regret and remorse. Again, The Law Project for Psychiatric Rights (PsychRights.org) is at your service.
Hi Sleeves, I have been sitting back reading your comments and allowing for others to respond to your rose coloured perceptions. I understand that you are passionate about your work and that you believe in what you do. I also believe that you are a compassionate person whom any patient would be fortunate to have serving him or her. Unfortunately your naivety regarding the role that psychiatry plays in our courts and in society in general is holding you back from seeing the bigger picture. I am Educational Director for The Law Project for Psychiatric Rights. Our website is PsychRights.org. I would be most happy to continue a discourse with you privately. My email is [email protected]. Best Wishes.
Hi Sleves, Thank you for posting. I agree that there is a great deal of anger expressed in these comments, but I think you would have to walk a mile in each person’s shoes to judge whether or not it is appropriate. Since you speak about me, I will respond. I sought support after the death of a child, was put on xanax and became suicidal. I was never suicidal without the help of suicide causing drugs. I lost my family because I was suicidal on suicide causing drugs. End of story. Regarding the idea that psychiatrists only “help” people who want help, that is simply untrue. Forced psychiatry is the norm.
Hi Vivek, I’m one of those survivors out in the trenches of the protracted drug withdrawal community. Since my esteemed colleagues have already done such an excellent job providing you resources, so you can learn the entire ugly truth of this public health nightmare, I only want to chime in with my thanks for your writing this article. I have been working as Educational Director and Volunteer Coordinator for The Law Project for Psychiatric Rights for the last four years, and aside from our litigation work, psych drug withdrawal has been our focus, partially because I have spent the last six years in withdrawal myself, with possibly another year ahead of me in my liquid titration from klonopin. The dangerous misinformation we are getting from well intentioned psychiatrists is actually more of a problem that psychiatrists who know nothing. I have been working in conjunction with a few other organisations to build a safe practitioner list, and I am at the point where I only accept people who are willing to “partner in learning”. The situation is desperate. I hope you can, in some way, help to get the ball rolling.
Dear Audrey, Thank you for your article. I have been liquid tapering from klonopin for two years now and it looks like it could be another six months to a year, which will bring the total to three years tapering from 1.5 mgs Klonopin. Unfortunately, tapering and healing from benzos can take years for many people. The rate of tapering of 5% or 10% leaves some people devastated. As much as you went through hell (and trust me, I know), I’m really concerned that someone might read this one account and wind up trashed because they followed what worked for you. I’m also concerned that people reading your experience might turn a suspicious eye towards those suffering for years. This is a huge problem for people in protracted withdrawal; the pressure from people in their lives who cannot understand this devastating iatrogenic illness. I urge readers to learn about liquid tapering (no pharmacy will help, it’s a technique that once learned provides control) and to play close attention to what your own body is telling you. Insomnia is a sign that one needs to slow the taper down or hold till it subsides. Thank you again for your article, Audrey, and best wishes.
Frehley, I’m glad Julie responded because I was stuck in my definition of “functional”. I guess functional is as functional does…..lol. Under “psychiatric care” I lost everything. I rarely left my home, slept enough for three people, and had no relationships with my children who had been taken from me. I had hospitalization after hospitalization for drug induced suicidal thoughts and actions. Imagine what this costs the taxpayers.Normally a person of Faith, the very concept of religion seemed irrelevant to me. I was, however “functioning”. I was a cog in the big corporate wheel which depended heavily on my continued consumption of medical services.In the five years since I walked away from “treatment” and gained my freedom, I have built a deeply fulfilling career serving Psych Survivors, writing articles, and composing new music (still don’t remember the body of work written before electroshock), I am getting married, have found closure with my ex-husband, and one of my daughters considers me her best friend. This is not functioning, this is self actualization.
I have so much for which to be grateful. Am I “healed”? First of all, when someone tells me they are “healed”, I think “Well nothing more to talk about here”. NOBODY is healed. Life Kills. I had to get over the idea, and I have to endlessly affirm that it is not true that I can ever go back to feeling the kind of safety I once felt in the world, or any sense that events will conform to my desires. I am not the same person. But I love the person I have become, who gets to jump out of bed in the morning with a million questions. The person who turns to her God to find her center. The mother who can drop everything for her children. The partner who can deeply love despite so much tragedy and heartbreak. Am I healed? No, I may yet be facing another year of withdrawal from my last drug. My body hurts like hell. Insomnia is the ruler of my kingdom, I rarely leave the house. Am I functional? Hell Yes.
I am sad to report to you that I know of no physician in the USA I can recommend at this point. Please, people reading this; if you know of physicians who are willing to partner with people in learning about safe withdrawal, I NEED THOSE NAMES. Everyone is different, the misinformation
I hear from doctors at national conferences is leading to chaos. At this point, my rule of thumb tends to be that if a doctor claims s/he “knows” about withdrawal…….that doc may be more dangerous than one who is willing to learn. Since you are in Florida, you may have some luck contacting CCHR in Clearwater. Laurie Ansbach (sp?) is the person I know best there, and she might have a resource. I wish you the best, my email is [email protected], let me know what you find?
I know this is discouraging to read, but the bottom line is that educating yourself and being in control of your taper is far better than finding someone who may or may not help. At this point in time. Docs who are open to learning…….OR (and this would be my way to go) a Naturopath working with a Nurse Practitioner. If you can find an “integrative” practice that includes acupuncture…these are people who understand that drugs are not the answer, and more and more I am finding that they are helping people in psych drug withdrawal.
If there is any way you can enlist the aid of natural practitioners, that’s the avenue that has most helped me. Especially acupuncture. We are energetic beings and acupuncture has thousands of years behind it, working with the electrical output of the body. Diet is the primary way of healing. Be careful with exercise; you don’t want your body to slip into fight or flight….because that can trigger insomnia. Connect with nature, that is soooo important. Monica Cassani’s website, “Beyond Meds” is really focused on healing the whole person. I strongly urge you to spend hours upon hours on Monica’s site!!
Regarding “family history of mental illness”, let’s talk about that. Can there be a “family history” of existential crisis, extreme emotional pain, suicide? Yes, there can (as you have experienced yourself)…but let’s be clear here. Without question, trauma has a life of it’s own. And fear is contagious. Trauma even crosses generations….but Trauma can be resolved. People heal trauma. There are many wonderful videos on youtube you can listen to about this; my favorite is Peter Levine.
So called “mental illness” is the place I really want to draw your attention. “Mental Illness” is a myth. There are no brain diseases here. There are no “disorders”. This is why the language is so important. The language of “mental illness” creates a multi billion dollar industry. Every time you say “PTSD” or “Schizophrenia” somewhere someone chants “Ka-Ching”. Money, money, money, this is all about money.
DV, What you have been through is so horrific that all I can think of is that I wish I could command a swarm of loving people to surround you, love you, and support you-the wounded healer- as you emerge into the butterfly you were always meant to be. You deserve a community. We all do.
I may be the least tech savvy person I know. I do know that I get an email every time someone comments on this article, but I don’t know how that works!
DV, Are you on facebook? That is where the community is…….in the cloud. What we here at Mad In America are working towards is community on the ground. Thank you for joining us. As far as “like minded” goes, I think we are anything BUT like minded. But that’s what is truly inspiring here. We have many different voices, and we tolerate those differences. Congress ought to take a lesson………Take Care, DV.
It has taken me a while to respond to you here because I am so moved by your bravery,courage and perseverance. (For people reading this, Julie is one of my heros). Thank you for your participation here. I look forward to all you will be writing. Cyberhug.
Dear DV,
I am so sorry you have been going through this hell. I want to address two points you make. The first, focus. Granted this is just a discussion group, and I don’t know you personally, just about everyone I know who has gotten off seroquel has experienced what you describe. It takes time, but you will heal. Four years out from my last dose of seroquel, my eyes have substantially improved and my focus is better than ever.
Focus, assuming we are even talking about the same thing,…….or cognitive ability, is a complicated issue in withdrawal because there are so many compounding stresses……including being in a medical dust storm of misinformation. How unbelievably stressful is it to be sick, because of the medical profession, and have no one to turn to but strangers who have been through this? Your world has changed, DV,………this is not just the drugs. This is also about TRAUMA.
Regarding “Schizo Voices”, now that you a member of this family (MIA), we don’t use that kind of language because it has no basis in any science, is a massive generalisation, and feeds into the witch hunt atmosphere that we are living in. One third of Ireland hears voices. Seriously. I do hear your distress, and also perhaps the fear of “going crazy”.
What I have learned from my own experience with hearing voices, even though my experiences were drug induced, is that however dislocated, however annoying or uncomfortable….the voices were mine, and they spoke of the needs and concerns about which I was conflicted. Fear of changes inside ourselves are natural, but as I overcame my fear and owned myself as I was emerging again, I began to appreciate the dialogue inside. What I have learned from other people…….is that everyone is different.
Welcome to MIA, DV………I believe your focus will improve just by being here. Follow what interests you and time will fly. Join us in figuring out what all this means.
Dear Johnl, No doubt good medical care is optimal. Your suggestions are excellent. The reason I am replying is that there are very few people today who really have access to the resources you rightly recommend. I was in that position in Asheville NC in 2009. No doctor would see. After expressing my wish to withdraw safely, I was cut off. Not even one GP was willing to see me.. I survived only because someone sent me a huge supply of seroquel XR in the mail. Many people have successfully withdrawn carefully from XR out of necessity. And they will continue………until physicians help people who have no money and few resources. In the meantime people will be withdrawing from XR’s because that is the only choice they have, and those of us coaching will support them.
Thank you Richard, for your response and the book suggestion. It is chilling, indeed, but it does appear that psychiatry is the wastebasket of a medical system that no longer knows how to say “we don’t know everything”.
Dear Ally, There is no happiness that can parallel the joy of waking up in the morning and seeing something right and beautiful, and good. This article feels like a moment of Grace. I remember when I sent my article “Badgers Included” to Bob Whitaker and kermit Cole, and a heated discussion ensued over my strong words. The article was published, and the discussion afterwards is indicative of that fear of really facing the scope of torture that psychiatry has perpetrated. This article shows clearly to me that our time is here.Those of us housebound and suffering…….and working our activist tails off can make a huge difference. The power of our voices, and the power of the human spirit gaining strength has amazed me since I was a little girl in the Civil Rights movement of the sixties. Our struggle is the Human Rights issue of our time, but we need to redefine this movement to include everyone, because no one is immune (pun intended) to medical tyranny. There are past victims, present…….Future. The trauma “gifted” to our children from having their mothers whisked out from under them, drugged into an unrecognizable strangers, and told that everything is fine………this violence, silent and insidious, is the kind of torture that can shatter and splinter souls. There is no turning away. People regularly ask me how I can keep doing this day after day. I tell them my work brings me joy. I feel that joy right now as tears roll out of one swollen eye. I’m about to turn sixty this year, and it is women like Ally who give me hope for my children’s future. Thank you Ally. Let’s Do this.
Dear johnl, I certainly do not appreciate your uncivil tone. I suspect, in fact that this is a psueodonym and that you are the person I coached in benzo withdrawal education, Greg Charambalakis. You have spread your venom all over facebook groups, called my house representing yourself as on old friend to get past my assistant (who also endeavored to help you). Your syntax, Greg, as well as your timing is a giveaway. I know you are very sick and suffering, but you need to get a grip before you hurt someone. I do not “advocate” people dry cutting anything. I do not “advocate” people tapering from a drug which was designed not to be withdrawn from (extended release formulations). Many people , however, have absolutely no choice and, for them, I provide as many resources as I can. If you are not the stalker whom I mention above this is my advice for you; stop looking to drug companies for the truth, no matter what they say. do your own independent research and talk to people with lived experience.
Candarae, Please don’t peddle that “drugs treat mental illness” line here. There is no science to support what you have said and it’s dangerous nonsense that this webzine is here to dispel. No, they are not there because something is wrong, they are there because someone THINKS there is something wrong, or because something has happpened. Please educate yourself, because you seem to have the impression that somehow there is an us and them. There is not. There are at least a dozen disorders for each and every person. The problem is obvious; diagnosis is name calling, not science, and drugs are toxic compounds which may or may not be useful for an individual for short term mitigation of a difficult life transition. This is what the science says. No, the medical community does not want to get rid of it, they want to screen to find more. It is an industry. This is not positive or negative, it is fact. From the place where we all have the facts straight, from there we move forward.
Dear Russerford, Thank you for your comment. I remain in contact with the Lou Pelletier, and trust me when I say they wanted much broader legislation. When you go stomping on the Hill, you soon realize that you have to be realistic. The question changes from “What do I want?” to “What can I get done?”. Lou is involved with many groups, at this point, and one of them is parental rights.org. There is a Constitutional Amendment proposed as well, defining parental rights to make medical, educational, and religious decisions.
Dear B, “Thought Disorder” has personal significance to me. In Asheville, NC, I went to have an EKG, they asked me if I would like to “speak to a clinician” when the test came back normal, I said, “No, as a matter of fact I would not”. They shot me up with Haldol, shipped me off to Broughton on a thirty second court order that read, “Anti-psychiatric Delusions, Off medication”. During the five days I spent there before they decided to get rid of me, (largely because of the information I was sharing with other prisoners but also because Jim Gottstein called, and also recruited Grace Jackson to help)……this is by far my best story;
I had to go to classes based on my diagnosis (“Thought Disorder”). That “thought Disorder” was, apparently, that my parents were whom they were,………. they said that to Grace Jackson…… who googled them. So I had to go to class to learn about my “illness”. The nurse “teaching” the class was wearing an incredibly expensive gold cross and I complimented her on it. She looked into my eyes and said, “I know that Jesus put doctors on earth to prescribe medication”
Dear John Hoggett, Thank you for your comment. I think the point I really want to make is not that these things never happen, but that the medical profession is not an extension of law enforcement. People have rights. In this country we believe in the presumption of innocence, and rule of law.
Hi Johnl, Tips for photosensitivity; SLOW DOWN on a taper. 10% can be way too much for many people. For some people “microtapering” is the safest method. Diluting the drug in 120 ml liquid, keeping good data, and slowly removing tiny amounts (and I mean tiny. 10th of a cc tiny)……..this is what I had to do with my last drug, a benzo. Search online and you will find many people providing instructions. There are even youtube video. The medical profession say, “Oh, yes, now we know about withdrawal syndromes and let’s be conservative and taper 10% at a time”. Based on what? Nothing. There is no research. The people who really know what’s going on are chemists who got stuck on these drugs, doctors who withdrew and suffered benzo hell, people who saw what the drugs really do thirty years ago; David Healy in the UK on ssri’s, Dr. Ray Armstrong in the US on benzo withdrawal. These people have to protect themselves against losing their licences for going against the grain. It’s like Cochrane Institute researcher Dr Peter Gotzsche says……this is organized crime. That’s the bad news. The good news is that as more and more people survive and thrive, we are learning. You are right that XR is not what is preferable for withdrawing, but let’s not scare people who have no choice. I know many people who have successfully tapered off XR and then bided their time until the doctor said, “Aren’t you glad I insisted that you stay on drug X? See how much better you are doing?”. I know one guy who stood up and said, “I have been off this drug for six months now, and all I have to say to you is *!##**!!”…..and walked away a free man. How nice. It just doesn’t go down so smoothly for most people today.So, to recap; 10 percent is a LARGE cut, IMHO. I favor liquid tapering, dry cutting is not good because you loose too much, and XR drugs are not designed for withdrawal but some people have no choice and they do well if they are careful. Very careful.xoxo
Dear Julie, Thanks for the tip on the light colored floor. As far as “permanent” damage goes…..it ain’t over till it’s over. At your memorial service someone may be able to comment on “permanent” damage that you suffered, but until then, I’m holding out Hope. Remember, the world’s greatest “expert” on corneal neuropathy told me my eyes would only get worse. Instead they have gotten progressively better….after several years of getting worse. Will I be able to drive again? Will I ever be free of eye pain? I do not know. I HOPE.
I enjoyed this article but felt there was glaring omission in regard to drug induced suicide. I was never suicidal before psych drugs, I was suicidal the entire time I was on until such point as I understood that it was the drugs…..and then I learned how to respond to those feelings by repeating, “This is not me, this is the drugs”. Until drug induced suicides are discussed in the same breath as non-drug induced, people will continue to be misled like I was. Frankly, it was torture. Brainwashing is torture.
Hi Everybody, In reading this wonderful thread I want to address the misconception that lobotomies are no longer done. They are. And they are now being rebranded as “Psychosurgery”. Insulin shock is not gone either, and when we advise people (I work for PsychRights) on filling out Advanced Directives we include both. People need to understand that because “mental patients” have no rights, anything goes.
Dear Robin1018, I urge you to read “medication Madness” by Peter Breggin. I could easily have written what you have, before I began to understand that the “cocktail” of drugs CAUSES what it is purported to treat….and worse. In fact, I’ll be thinking about you (even though I don’t know who you are). Electroshock is brain damage and you are being badly, badly misled. It is also very frightening to imagine that your family prefers you damaged. Unfortunately, I am not surprised because my family did the same thing. Looking back, safe and truly loved for the person I am, my family’s failure to value me and protect me is a betrayal of massive proportions.
Great to see you here commenting. I think you are wise. Very wise. Balancing the risks of withdrawal with the needs of your family is a very tough one. I do want to say that there is every reason to be hopeful for the future. And when the time is right for you, if you decide to taper. there should be more resources…….maybe even some real acknowledgement and research from the medical profession.Never give up HOPE.xoxoNancy
I know it’s difficult to wrap one’s mind around the idea that the people prescribing the drugs know little to nothing about them, in fact it’s shocking, it’s outrageous………and it is TRUE.
So x, let go of your wishful thinking. That’s my best advice. Since NOBODY has done any research on withdrawal, I feel safe in saying “Don’t look for good advice on the label”.
Schizo-affective, Shmizo-shmaffective………….is another comment I am dying to make. These diagnoses mean absolutely nothing except that you went to a psychiatrist and the psychiatrist categorized you randomly, and then billed for that “expert service”. You are an intelligent person, a highly intelligent person, but you have been had. We all have.
But all that doesn’t really matter right now. What matters is that this drug is harming you. Finding a medical professional who will partner with you is the most important thing, IMO. I found my partner in an Integrative Nurse Practitioner, she already understood the harmful nature of the drugs, and had treated many depressed patients naturally. Christine read Peter Breggin’s book on withdrawal (which has it’s flaws), and many other articles I brought her and together we worked on diet and supplements to address deficiencies, toxicity, and inflammation. Acupuncture and massage were/are also important elements of easing withdrawal for me.
x, In answer to your last question, no. The only thing that ends withdrawal is healing. Anything else is kicking the can down the road. Your psychiatrist will be more than happy to prescribe another drug to mask it. Don’t do it.
The fact that you are going into withdrawal after one missed dose, and that you are having memory issues tells me two things. One; you are not “tolerating” the drug at all (with XR the blood level is more even), and two; you are not a good candidate for taking the drug because you can’t remember to take it. Both conclusions lead me to believe that tapering off may be your best option. I would add that seroquel causes dementia, and your memory issue is not a good sign.
Tapering has several steps. Find a SAFE SUPPLY, do the REASEARCH, create SUPPORT, and throw out the calendar.
I wish you the very best x, my email is [email protected] if I can help you find any resources.
Hi Liloisabride, I had some itching…….that time tends to be a bit of a haze. It did go away, it wasn’t really troublesome. The eye pain has been my bete noir.I appreciate the discussion and am learning some things about the antihistamine connection. High histamine is a major cause of insomnia I’m told. I spent months on the low histamine paleo diet that Monica Cassani was also on. She and I talked recipes for a short time. My love of food and cooking has been a good friend to me. Best Wishes.
Thanks for writing, thanks for finding this site. I think we Americans have much in common with New Zealanders ,being the only countries that broadcast pharmaceutical propaganda over public media.
Yes, what happened to me is outrageous……criminal really, but far from uncommon. I wrote this article three years ago. Several months afterwards I went into benzodiazepine tolerance and the article title I’ve been contemplating is “From Seroquel to Benzo Hell”.
For the last eighteen months I have been going through a liquid microtaper from 1.5 mgs klonopin. I’m down to .12 mgs but the last part tends to be the most difficult and I don’t yet see the end in sight. I have learned so much about drug withdrawal in the last few years, and met so many, many people who are stepping up to learn and help. I very much feel as if I am living in the trenches on a battlefield.
Unfortunately, I am housebound for the most part. Although my eyes have improved a lot, I still can’t drive, and the benzo withdrawal affects me most in muscle pain. Imagine your worst athletic cramps…….and then imagine it not going away, and being unable to exercise. The muscle pain of benzodiazepine withdrawal, added to unremitting insomnia and anxiety, are the reasons some people commit suicide.
What has saved my life is being Loved, and Loving other people through the work of witnessing. Witnessing means two things to me. In Southern Baptist Speak it means speaking the truth of Spirit. Telling the story. In Underground Drug Withdrawal Railroad Speak (I’m making this up as I go along) it means “BEING a witness”. Hearing someone, Listening, and BEING with them.
Pain is not something that can be avoided in life. In fact, the avoidance of suffering causes.. even more suffering. And comparing the magnitude of any one person’s suffering to another’s is almost a way of pushing that person away. A pedestal is as isolating as a prison. Pain and Suffering are also two very different entities, I’ve learned. I am in a lot of pain. Physical and emotional. I have lost so much, and finally safe, I can feel the depth of those losses.
But I am not suffering. I am not suffering because I am no longer reacting in fear all the time, and because I feel more deeply connected to other people and to the community of humankind. And, probably most importantly, I am not suffering because I have a voice. Here I am talking to a young man on the other side of the world who has his entire life ahead of him, about this difficult, difficult subject.
Please take good care of yourself, we need empathetic people in our movement to save lives. You can help in any number of ways, activism looks different on everyone. Educating health professionals is the most important one, IMO. It is not easy. But it has to happen.
I can understand the narcissistic injury it presents………sorry for the clinical lingo…….people don’t want to go through 12 years of a brutal educational environment for the sake of the freedom to practice medicine…….and then have a bunch of angry customers tell them how to do their jobs.
” I mean WHO ARE these people anyway??I’M the one who suffered through Internship and Residency with attendings treating ME like a slave who doesn’t need sleep…..I DESERVE the position of power that society has conferred upon ME.”
Doctors are trauma survivors too. If we want to educate them we need to understand that. I’ll go even further and say that it is rare to find anyone who does not carry unresolved trauma today.
Josh, from what you say I am concluding that you need to taper slowly. No one regrets tapering slowwwwwwwwwwwwwly. Tons of people ( as in piles of bodies)
regret NOT doing it. I hope you understand that staying on Quetiapine is a mistake, unless you just can’t get off it. I now know a lot of people whose body chemistry has changed so much they just have been unable. There is no shame in any of this, there is no right thing……there is only the best thing. The best thing for you.
Sandy, I really appreciate your openness and your honesty. You are right, being wrong doesn’t equal being Evil. I think about where I was five years ago as well. Without question, some of my positions have softened as I meet people and listen to their stories. Being wrong doesn’t necessarily mean evil, but those who know they are wrong, and continue to abuse power…..well, that fairly meets my criteria for evil. You mentioned earlier that “society has given psychiatry vast power”. I suppose that is true in a macrocosmic way, but really that power has been cultivated mostly behind closed doors. Through carefully crafted legislation introduced and supported by private lobbies. The corporate medical coup goes back to the late forties. It was not enough for the Rockefellers to buy medical schools for the purpose of selling chemicals and radiation etc………every other alternative had to be made illegal. And it was. And still is.
WOW is right. This is intense. For me the most intense moment was when the psychiatrist walked into the room…..and the ripples of power set in. Must not upset a psychiatrist…..we all know what happens when the psychiatrist is not happy.
Bob Whitaker popped in with a full salute. OMG, what if Sandra Steingard decided she didn’t want to give this site her magic seal of approval? What if she takes her ball and goes home??? What will we do then??? We can’t have that!!
So let’s not talk about what makes us uncomfortable, after all isn’t that what all this is about? Everyone wants to be comfortable….SO, let’s repackage the truth. Use language in such a way so as not to ruffle feathers.
It was Okay for the doctor (Sandy Steingard, in this case) to suggest to Daniel Mackler that he might not be using his voice appropriately. After all, that is her job right? She gets to be the ultimate expert on what is appropriate, right? The elite condescend, patronize, and infantilize………and no one even says a word. Even in this group.
I’m going to defer to the imagination on how I personally would suggest to Dr. Steingard how she might use her voice in a more appropriate way. People are dying.
Last Saturday week, four thousand people turned out to protest psychiatry in Boston. The case of Justina Pelletier has hit a nerve. The fifty thousand people who have been facebook Justina advocates, from all over , are looking at other Justina’s to help. They are asking naive questions like, “Why is it everywhere I look, Psychiatry is the handmaiden of injustice? CPS, Family Court, Divorce proceedings, schools, hospitals….How could this happen in our country??”
And this really was inevitable. You keep creating victims long enough, and you wind up facing the mob.
So while we sit here and engage in a “civilized discussion” about the genocide that is taking place in front of our eyes, people who are willing to do something about it are the ones making the changes. Texas Congressman Steve Stockman from West Texas has a Bill on the House floor that aims to give parents the power to say no. Lou Pelletier and his legal team have been spending a good deal of time on the Hill, and Lou mentions several people in Congress who have themselves experienced psychiatric coercion during hospitalizations of their children for medical problems.
There is a powerful spark of populism gaining friction in America and the web of fraud, corruption, and murder that the psychiatric profession has perpetrated is hiding in plain sight.
I agree with Chaya Grossberg about what it means to be an artist. I was a recording artist before psychiatrists in Concord, New Hampshire ripped my heart out. Maybe someday I can get back to songwriting, but I have a duty to do for my country, my children, and myself. I have to use my voice and express the people who tell me their stories of torture and of resilience.
Freedom of speech is the fundamental cornerstone of all of our civil liberties . It is a precious, precious right of every human being to express themselves. Any chipping away of it, or rationalization for not protecting it is a gift to darker forces.
I mean no disrespect for Sandra Steingard. I feel sympathy towards her and cannot imagine the pressure of being in her position. I also cannot blame her for my own heightened sense of power dynamics, or at least not her directly.
It heartens me to see that Bob Whitaker is asking important questions about what MIA is doing and what it hopes to accomplish, but in the meantime, I feel such enormous gratitude for the voice that has been given me here, and so many of the other voices here who have become important sources of inspiration, Daniel Macker would be one shining example.
Humanbeing, You can help!!!!! No, you are not too damaged. There are great ways to communicate and get past the myths, and you can save lives!!!!!! There is no greater gift, in my opinion, than knowing that you have informed people…….and knowing that they will not fall prey to this Evil. My job as Educational Director for The Law Project for Psychiatric Rights involves leadership development. You can reach me at [email protected]. I am also withdrawing from Klonopin (my last drug). I’m almost finished!!! xoxoNancy
Since you are already angry with the “pdoc”, be prepared to get angrier. Bipolar is made-up. There is no disease, no medical evidence of any such “disorder” at all. None. This is not to say that people don’t identify their experiences with this label, but that’s all it is. A label.
The weakness in the wrists that you mentioned is something that I have experienced as well. Pretty much anything under the sun can be part of withdrawal because the drug is a toxin, and every cell in the body is affected.
Insomnia is without a doubt the biggest challenge, but it sounds like you have someone who will stand by you, and that is the most important thing. One of the things I have learned about getting sleep is that exercising after five in the evening can overstimulate me. Even being out for a social evening can interfere with my fragile sleep. Overstimulation is very real. Learning your body’s cues will help. There are many good websites on “sleep hygiene”, but taking overstimulation into account is critical. Some people find that reducing electromagnetic fields makes a big difference (turn off all electronics). White noise helps many people.
Watch carefully for what I call “the kick”. For some reason, and in the absence of any research we really have no idea why, what we are seeing is than many people encounter a reemergence of severe withdrawal between four to seven months after discontinuation (your very last dose). If you are not surprised…. IF this happens……you can ride it out without getting diagnosed with fibromyalgia, MS, or whatever your gp can think of. Time is your friend. You will heal.
If I can help you connect with resources, you can contact me at [email protected].
Welcome to the world of Survivors. Best folks in the world.xoxo Nancy
Hi Oli, Good question, my direct sources are Lou and Jennifer Pelletier. I use quotes from Justina herself, but I have not been able to speak to her directly. No writer has.
Inspiring article, Michael. The elephant in the room here is CCHR. The smear campaign against CCHR has been so effective that we are willing to discriminate against people, people who not only share our valid concerns but who are willing to put their money where their mouths are. And the bottom line is that Psychiatry is all about discrimination. Building broad coalitions is the way movements succeed. I’m working on the Justina Pelletier case right now. There are 30 thousand people reading the families’ “Miracle For Justina” facebook page.The Lyme’s Disease community is activated. As I was contacting people to provide resources for the Pelletiers, one person I contacted did not want anything to do with it because Liberty Counsel has gotten involved. This, IMO, is a moment for us all to examine our own personal bigotries and GET OVER THEM. Either we are against the thought police or we are not. If we are against the thought police than we have to defend perspectives that don’t jive with our own. Broaden our coalitions, make it local, WE CAN DO THIS. The Justina case is the perfect way to introduce the issues because every single person who reads about this case understands that what is happening to Justina could happen to anyone. People are getting it.
Thank you Leah, for this excellent article. Sadly, for me as well as others I know, Family is indeed the enemy. To suppose that every family wants the best for their family members is unfortunately very naive. For many dysfunctional families, Psychiatry has served well to silence and imprison those who dared to long for a better life.
Not to worry MissusSharon, there’s a thread there. People can see my responses in blue. I really appreciate that you responded instead of going away. You are among friends.Best, Nancy
Thank You MissusSharon!!!! It was the line “contact the maker of seroquel and see if they will help you if you don’t want to come off”. That was a red flag for me. Drug companies don’t “help” people by giving them seroquel. This drug kills. This drug is addictive. There is nothing “helpful” that the makers of seroquel are involved with doing.The makers of seroquel lied through their teeth about this drug in order to make a profit. When you suggested contacting them, and suggested that some people might “want” to stay on, my fear was that someone coming to this site might read that comment and think that seroquel was not really so toxic. It is. Thank you so much for your response.
Dear Comingoff, Yes I strongly stand behind James Harper’s “How to get off Psychoactive Drugs Safely” (they will send you a free copy) and I take some of the supplements that the author developed. The supplements are now sold by a new company because the old one changed the formulas. (http://neurogeneticsolutions.com/)
Omega 3’s are fine for everyone. Actually, they are really essential for healing. The brain consumes Omega 3’s at 45% higher rate than the rest of the body. What is variable for people is Probiotics. You are welcome to email me at [email protected] for resources and support.
Dear AgniYoga, Please forgive me, I thought you were commenting on my article when in fact you were responding to someone whom I truly believe is a troll.
Thank you, Monica Cassani and Mad In America, for posting this article in such a timely manner. Yesterday a man named Lou Pelletier and his wife Linda experienced the complete nightmare to which this article alludes. On Valentines Day of last year (2013) the Pelletiers brought their 15 year old daughter to Boston Children’s Hospital in an emergency. Justina had been in treatment for Mitochondrial Disease and came down with the flu in Boston, on vacation. The Connecticut couple did exactly as was recommended by Justina’s doctor at Tufts. They went to Children’s Hospital. There a psychiatric resident, newly minted, hijacked the case without even bothering either to read her extensive medical records or consult with her physician. A court order remanded her into the custody of the state of Mass. on the basis of a diagnosis of Somataform Disorder, and the parents were the recipients of a gag order. Lou’s seriously ill daughter was kidnapped by a Hospital who claimed it was all in her mind. He did what any loving father ought to do. He went on national media. Yesterday the court ruled that Justina (with red lines on her abdomen and muscle atrophy; in a wheel chair) will be dumped into the fostercare system .No family will be allowed contact because they must all be in on this psychological conspiracy to make a healthy child sick. Medical treatment will not be allowed because “she’s making it up” .Remove Psychiatry from this equation and it becomes very simple; if criminal activity, like harming a child, is involved then criminal charges are filed, the trial is public and The Rule of Law must be observed. Any infringement can be appealed. Enter Psychiatry and the landscape morphs into the Gulag Archipelago where anyone can be disappeared, no due process is involved, and no one is permitted even to discuss it on pain of repercussion. This is not the future we are talking about, this is NOW. When a lifelong Democrat and Progressive like myself begins chanting, “God Bless Glenn Beck”, the world has truly turned on its’ head. I have been writing about this case and have had some very small contact with Lou Pelletier, who is prepared to go to jail should that be necessary to save his daughter’s life. A facebook page is connecting people from all over (https://www.facebook.com/groups/freejustina/permalink/234967319960959/) and two petitions are being circulated; one to the Wite House, and one to The New York Times (https://www.change.org/petitions/new-york-times-cover-the-justina-pelletier-case-in-boston). It’s invigorating to see how people are springing into grassroots action, but on the other hand it’s also clear that most of the people stepping up to the plate really have no idea of the extent to which Psychiatry is truly above the law. Over and over people are saying, “How can something like this happen?”. Monica is right in saying that Education is the antidote, but right now that antidote looks to many like poison.
…..Outside the CHURCH (sorry for the freudian slip) was where the Asheville police snatched me. You were certainly correct about depression being the portal through which the torture was imposed on me, and many other survivors I know, but another large group is people who experience disorientation or psychosis due to many causes. I appreciated your last line asking why people experience depression, I thought it was very insightful as well as poetic, but it felt to me as if it was focused on the individual, when my experience has shown that trauma of one kind or another is always involved, and one of the things that needs to change about any mental health system is the assumption that people who present are either to blame or can even necessarily be responsible for the situation. Thank you AgniYoga for your comment.
Assuming makes an ass out of you and me, as the saying goes. I started withdrawing from drugs in 2008. My loving sister came swooped down from Mass. to N.C. and had me arrested and force drugged. All she had to do was call 911 and say I was suicidal, and they came and destroyed my life in North Carolina. That’s when I became an activist. I spoke up and the response was that my prescritions were cancelled, no psychiatrist would see me, no family doctor in Asheville would see me because no psychiatrist would see me, and I knew if I went to the hospital that I’d be shot up and sent off to the state hospital, Broughton (famous for their brownies). That did eventually happen, but not before the CEO of the largest child drugging outfit in Asheville (The Pisgah Institute) called the police and reposted me as a “suicidal prostitute trespassing at a church”. It was a church where I had sung in the choir, and I was scheduled to perform. Father’s Day 2010. The police grabbed me outside the truth, took me to the station and treated me to a sexual assault and kept me without glasses or medication for 24 hrs. I came to Alaska and began working at PsychRights in October of 2010 after Jim Gottstein and Kim Crespi helped get me free. Today I am still withdrawing. Over a year of microtapering from Klonopin.
Dear Dear S, I can only tell you what I would do. I would back the hell up!!! The cardinal rule for me is “no sleep, no withdrawal”. There are many people who have traveled this road and can coach you, even advocate for you. You can email me at [email protected]. If you were hospitalized, they would put you right back on the drug……being hospitalized is to be avoided . I’ll be honest, psychdrug withdrawal in general can set off nerve pain in people who have never had it (as can taking these drugs to begin with). You will have to taper very, very slowly…….and you will need help and support. You have a number of difficult and complicated issues to weigh through, and you must restore your sleep in order even to entertain all these thought. Anyone would. We simply can’t function or heal without sleep. The insurance question is another matter. Educating your doctors could help you resolve that situation, but either way you are going to need a safe supply in order to taper. I have to be honest here, if it were me in your situation, I might be considering lowering the dose as much as possible (Very Sloowwwly) but not taking the chance of completely stopping it. I don’t know your age, but you have to consider both the routes of staying on a lower dose and taking the chance of what would happen if you discontinued completely. There is no research. Lastly, if I were you I would do ANYTHING (even be hospitalized) to avoid being cut off. Cold Turkey off 100mgs was a disaster for me, and I had no complicating health conditions. Your situation is difficult but please remember that many have faced these challenging situations and prevailed. I hope you will consider changing your nom de plume. There were good reasons for your suicidality, and once you figure those out (for me, it was the drugs that caused suicidal thought and actions)you can move forward. Holding suicidality up as your identity is not a good idea. You are not suicidality. You are a living, breathing, multidemensional being who wants to live and heal.
I saw a number of eye doctors who said the same thing. The damaged corneal nerves were seen on a confocal miscroscope. My doctor was Dr Rosenthal in Boston, but he has retired from seeing patients. Here’s the thing; I was told this eye condition is permanent and gets progressively worse. I wrote this article in 2010. Four years later my eyes are improving, still painful but improving.I would suggest to your doctor that he is weaning you far too fast. Show him my article, many people have done that……slow and steady wins the race. Best Wishes, Nancy
What this article accomplishes is to distract the reader from the reality that Electroshock is brain damage. If that alone is not disturbing enough, the suggestion there is that forgetting is an appropriate way of dealing with life events, as if that were even possible. My question is this; are they recommending that everyone else who was involved in these undesirable memories must also be zapped? This is pure science fiction and it scares the hell out of me.
Clearly you reacted the same way that I did, but I’d prefer to reserve judgement. We really don’t know the situation. What I greatly appreciate is the amazing list of resources you have provided, I’m looking forward to following up on the articles and authors you cite. Thank you more than I can say.
And I’m glad I made your day!!! Not everyone appreciates my style of communication as much as you do. Thanks for your kind words.
I apologize for the harshness of my first reply. We trust doctors and it’s hard to believe that they would provide false information, but unfortunately that is now the world we live in.
I can imagine this might leave you in a place of not knowing where to turn. There are people who can help you navigate through this mess, and nutrition is also critical to mental health.
The website I would recommend to you is Beyond Meds.
Equally as important, the real question for your wife is not “What is wrong with her?”, it is, “What happened to her?”. Finding a therapist who can be a compassionate witness may be extremely helpful provided they are well educated in the myths of so-called mental illness.
There really are options and alternatives and I wish you both the very best on this daunting journey. If I can be of service, please let me know.
While I appreciate your thanks, the best I can do here is to tell you the truth. First of all, I find your nom de plume highly offensive. Secondly, I frankly don’t believe that your wife is “Bipolar” for several reasons, the most important one being that you like your wife drugged.The second reason is that I have spent years reading research, and there is absolutely no proof that “Bipolar Disorder” exists. I am not denying anyone’s experience, but in terms of medical evidence, there is none.Any female on the planet can walk into a psychiatrists’ office and be designated “Bipolar”. Lastly, it is clear to me that you are not doing your homework because there literally is no such thing as a chemical imbalance until one takes psychoactive drugs (which can even include some antibiotics). Let me repeat that; There Is No Such Thing as a Chemical Imbalance.It is a marketing fiction. I’m sure you mean well, or at least I hope you do, but from your post I have to be honest and tell you that your post is quite disturbing. If your wife, whom you should never call “crazy”, wants to communicate with me about diet, or anything else in my article, she is welcome to contact me at [email protected].
I really don’t mean to be rude, and I hope you can hear what I’m saying.
Psychiatric drugs are not “medication”, Sir, they are chemical agents which disable the brain and are highly toxic. Used in crisis as respite for a short duration, some people find them helpful, but they “treat” nothing, and taken long term lead to chronicity and relapse.
If this is shocking news to you, I urge you to stay here and read more articles. This is where people come when it’s time to wake up.
Wishing you the best, please let your wife know she is welcome to contact me. And thank you for your comment.
Dear Rittenhouserobz, Yes there are MD’s who look at the bigger picture. Please contact me and I will help you find someone. Contact me @ [email protected]. There is no way of knowing now how a particular person will react to coming off seroquel. This we know; slow and steady wins the race.Supplements supporting withdrawal have been and continue to be critical to my wellness and I’m happy to share resources with you, as well as my own personal experience. Please do not hesitate to get in touch over the holidays. Your assessment of the medical profession resonates with mine. “They” are blessed to have you in “their” corner.
Dear Sweep, Sounds very, very familiar. If I can support you, or you just want to rant, I am at your service. I really appreciate your sharing because you’ve mentioned some important things. You have shown us that two years (as opposed to my example of over ten years)of taking seroquel and tapering slowly still left you in a similar state of crushing insomnia and general disability. This is why I wrote this article; so that we could gather this kind of anecdotal information. Sweep, please consider this; you took this drug during a difficult time. What that means is that just when you needed to move through and process, your brain was assaulted. Not only are you recovering from this assault, you also are likely to be carrying old wounds that need healing (the difficult time that brought you to ask for help). The anger that you feel is likely bound up with this. I know mine was. So what I’m saying is, honor your anger, allow it to be a healing and purifying heat that carries you into a place of freedom to move forward.Other people who tell you you need to let it go are….other people.Sometimes other people are right. Letting go of something you aren’t finished with is not letting go. My healing has been slow but constant. Three years after writing this article, I’m sleeping six hours or more. Supplements really help me. I take L-theanine, melatonin, Seriphos (a cortisol managing natural formula) and passion flower. Of course, I’m still microtapering off my last drug, Klonopin, and benzos have strong insomnia effects, but even so, I’m sleeping. I know you will be too. Take Care of You.
I hear you, Trev. I read things I wrote a few years ago and as hard as it is to believe that I was so bought in to this fraud, it is the very thing that gives me hope for others.Life can change on the turn of a dime. Fantastic that you have discovered Dr. Breggin. His books are invaluable, with the exception of his latest on drug withdrawal. Those of us working with others tapering off know better.Breggin recommends 10% cuts which are fine for some and send others into a world of hurt.His book is also based on zero research, so frankly, I don’t understand what he is thinking.I think I see an activist in you, Brother, so, “Welcome to the Matrix, we’ve been expecting you” (my signature line).Take Care, and keep us posted. Also Trev, there are facebook support groups which are truly excellent. If that interests you, please contact me at [email protected].
Dear Trevonline, DO NOT cold turkey off the seroquel. Not in any way shape or form worth the risk. The fact that you are exhausted suggest MANY things you and your doctor need to look into. Adrenal fatigue is the first thing that comes to mind.Chronic fatigue syndrome (an autoimmune issue) is one of the many things people who have come off psych drugs experience, so I’m not sure I’m on board with your assessment that you are OK. Certainly not OK enough to COLD TURKEY off the least studied class of drugs; neuroleptics. Mine is literally the only article on seroquel withdrawal on the internet. But in truth, NO ONE is safe. It’s Russian Roulette; we have NO IDEA who will walk away and shake off the dust and who will be disabled and in chronic pain. DO NOT COLD TURKEY. Think of all the people whose lives would be affected if you couldd no longer be active in their lives. Think of your daughter. Nancy
I hear you Francesca, but I have to disagree with your example of chemotherapy. Anaesthesia is poison too, but who would want to go through surgery without it? You have a point, but in this case Ernest Hemmingway best described the effects of ECT when he said, “The operation was successful but the patient was lost”. The other thing is that I’m more than unconvinced that people who say they”benefitted” have had the opportunity to assess. If I had been interviewed a couple years after ECT I could easily have been(and maybe was, I don’t remember) someone who said I “benefitted”. But if you had asked my children they would have told a different and very tragic story. Yes, imagining that there’s this harmless procedure that will take away your pain may hold out some appeal to people who don’t understand what’s at stake, but it’s a lie. Like the chemical imbalance lie. I happen to agree with you that suicide should be legal. Having a government force you to be alive is something at which our American founders would have recoiled. The issues of conscience here on Mad in America are many, but I can’t go with you on your statement that banning ect is a “non-starter”. Banning ECT would not be very different from banning slavery. I went to high school half a mile from Stonewall Jackson’s headquarters and I have heard racism in its’ purest form. Travel back in time (or just visit Mississippi) and you can hear people saying that ending slavery is a “non-starter”.
Francesca Allan, I appreciate your support for informed consent and personal choice, but the oath of a physician is not to harm. To confuse recovery with brain damage is the old lobotomy justification. Recovery according to whom and by what definition?
Before the movie “Cuckoos nest” I heard many people justify lobotomies. Brain Damage. “Oh she’s much happier” people would say, and what it really meant was that suffering was out of sight and people were relieved. Imagine how you would feel if you could not remember the births of your children, the day you got married, the people you loved whose faces are vaguely familiar. Wouldn’t it be worth the arduous task of facing fear, oppression, and trauma and come out on the other side of hell with an expanded consciousness? Is it fair to a mother’s children that a physician changes the very identity of their mother? Do they get to be informed and sign consent? No, this torture must be stopped and physicians must be required by law to tell the truth that HOPE is real, anguish is not disease, and brain damage is not a “treatment”.
Great article, Phil and it’s nice to see your face (I’ve been posting Phil’s blog on FB). I’m hoping we get as many ect survivors to add their stories here as we can. My story repeats what has already been made a clear pattern. Depression hit me like a two by four. Like the good doobie I was, I went to the shrink. I had a “chemical imbalance” which safe and effective drugs for life was the answer. Hypomanic reaction to prozac, every drug on the market at the time for my “Unmasked Bipolar Disorder”, became a suicidal maniac and ECT was “medically necessary”. Lost years of memory.My children taken from me. My career shattered. What I find insulting to my intelligence is that these so-called studies rely on self reporting,and I keep asking,how about a study that interviews people who knew someone who had ect before they were assaulted? The person who really sticks in my mind was someone I met a few years ago. She drove around in a van filled with stuffed animals, lived in a trailer (nothing wrong with either) and did her level best to get me hospitalized “for my own good” because of my activism. I later learned that she had a PhD in Literature/Philosophy from Columbia University. That person was gone. The fact is, as you quoted from the textbooks, ECT is brain damage. ECT does not “reduce frontal cortical connectivity in depressive disorders” because depressive disorders are not people. Human beings who are electroshocked, one and all, are victims of closed head trauma. Each of us has our own unique brain injury brought to us directly from those sworn to do no harm. To the person who wrote that ECT is no longer being advertised; look again. ECT is being rebranded. Duke University has mounted a disinformation campaign pushing it (among many others) and think about it for a moment. Put on you Evil Thinking Cap. This past year there has been movement in exposing psychiatric drugs. What better time to push a “non-drug therapy”?? Phil, thanks again for your continuing presence in these dark, dark times.
Dear Maria, I’m so pleased to have the opportunity to thank you and to share my story.So, first, Thank You. I kind of feel like I’m eight years old writing to the President. In 2009, you inspired me to become an activist. I got my first personal computer, and I listened to every interview or video I could find, and I read anything that google could find with your name in it.Thank you so much. You showed me how a Lady does this.Maria, I know in my heart that your son is proud of his mother, just as I know that my little girl lives on. My little Sarah died at four and a half months in 1982. In 1989, I went to a psychiatrist in Concord, New Hampshire, after my fourth daughter was born. I had post partum depression and my husband was trying to hide that he didn’t want to be married. The psychiatrist listened to me for a long time (he was quite the charmer)and then pronounced with great certainty that “In his clinical experience” (imagine someone smoking a pipe and peering at the heavens)the depth of my pain could only mean one thing. I must have been molested as a child. Our work would be to uncover the memory and confront the abuser. What followed was a nightmare worth writing about someday….it was a nuclear disaster. The drugs I was given, and the number of nearly completed suicide attempts I made (all explained as “mental illness”)….mine is a familiar and well documented psych survivor story. What I wanted to focus on was the complete lack of understanding that man had of what it’s like to lose a child, that losing a child is forever, and that after losing a child life itself is never the same. Reframing becomes necessary, and more than once. Our entire identities are changed. This incredibly ignorant and fascist psychiatric elite that charges itself with inventing disease while somehow seeing itself as a gift to humanity had better be prepared to arrest all Jews sitting Shiva. Now here’s an idea for any drug rep who may read this; forget about teen screen, that’s small potatoes. Put surveillance in graveyards and find the people who show up on camera. If grass has grown on the grave, you know the person is mentally ill. Could be big money. That was my way of thanking you for your sarcasm in your article, Maria. It was great. What disturbs me most, the grief debacle, is that it really is targeted at women, and guess what? All of psychiatry is. Yeah, they’ve tried to balance things out with ADHD but this is only perhaps because passivity is now politically correct.Political is what this all is.The politics of greed and power.And the really tragic thing about the very idea of denying grief is that it’s the best possible recipe for making creativity absolutely disappear.So thnk you Mria and God Speed. This is a song I wrote for Sarah,http://nancyrubenstein.com/HomeByTheLight/04-Take%20Me%20toTexhoma.mp3
Dear Ripley, If you would like to communicate with me privately, you are welcome to email me at [email protected] with the understanding that I am not a doctor, and that my sharing of resources and experiences should not be construed as medical advice. For readers seeing my response to Ripley, my remarks are addressed to you all. I don’t believe in Bipolar Disorder.There has been oodles and oodles of money spent on researching “Bipolar Disorder” and the study they trot out to convince you that it’s a brain disease has no undrugged control group. Read that sentence again. The “Bipolar Subjects” had all been fed neuroleptics, ssri’s, mood stabilizers (really “anti-seizure” drugs) and other assorted tranquilizers (including benzos) for years. Their brain scans all showed shrunken frontal lobe and basal ganglia (Grace Jackson MD has documented and written about this). Ripley, at this point I pause to say to YOU; “Friends don’t let Friends Cold Turkey”. Please Ripley, whatever else you may read on this site, Cold Turkey can land you disabled. Disabled, period. People come off these drugs safely without any further harm, but they do it well-informed from many sources, and they do it slowly, and with support. I have something very unpleasant to say now; If I went off 200 milligrams of seroquel cold turkey I wouldn’t be keeping cruise reservations, I would be making medical arrangements.The horror story that I wrote, which I assume you read (because you left a comment)happened after cold turkey from half of what you did. You may be a miraculous toxin metabolizer and you may be fine, or you may be in the roughly forty percent of people who have a problem. There is no research, only anecdotes. Mine is one of very, very few out there. I read about an eight month kick with seroquel; where all of a sudden the shit hits the fan. Because I read that (and that web page has been down for two years now, but the guy had a handle on biochemistry and pharmacology)I was emotionally prepared, in a way, for what happened to me (my eyes).I am not speaking to you as an expert. But what happens if you get really, really, really sick on a cruise? You’ll have to make that decision. There is no research, not even a facebook forum where people who have gotten off of seroquel support others. Why I can only conjecture; when I decided to come off in 2009, the very nice psychiatrist “treating me” said, “People like you don’t come off drugs”. People really had been told, “You need to take this for life”. It’s still happening and I fear that this is what is happening to you. You have a lot going on in your life, you don’t eat well enough or sleep well enough and depression hits you like a two by four. You’re at your very wits end, or beyond, and then someone tells you, “Oh, you poor thing, you’ve got this brain disease that’s making you feel the way you do. There’s no shame in it, it’s a physical disease. Like Diabetes, you need to take medication for the rest of your life”. I believed this for over ten years. The shock of learning it isn’t true has completely changed my life….for the better. There’s no brain disease. But life is hard. And being human is messy.Ripley, I’ll be thinking of you, and wishing you well. The journey you are on that brought you to Mad In America is quite an adventure, and the people here are the best. I spent a couple days deciding whether or not to say these things that I think you need to hear. I thought of some very good reasons not to say anything. And then I changed my mind. Someone should have told me sooner. Many people should have told me sooner.Take Care.
Hi Claire, I reread the losing weight comment and I wanted to share that in the last few years I have seen quite a number of people lose the weight they gained on drugs on the Paleo Diet. Pretty much Paleo is about stopping grains and sweeteners (honey is legit).I was on it for two years very strictly while I healed from “leaky gut” (very common these days). My partial understanding of weight gain is insulin resistance, and it’s my belief that this process is also induced by our fake food supply. Here’s what wikipedia has to say;One of insulin’s functions is to regulate delivery of glucose into cells to provide them with energy.[1] Insulin resistant cells cannot take in glucose, amino acids and fatty acids. Thus, glucose, fatty acids and amino acids ‘leak’ out of the cells. A decrease in insulin/glucagon ratio inhibits glycolysis which in turn decreases energy production. The resulting increase in blood glucose may raise levels outside the normal range and cause adverse health effects, depending on dietary conditions.[2] Certain cell types such as fat and muscle cells require insulin to absorb glucose. When these cells fail to respond adequately to circulating insulin, blood glucose levels rise. The liver helps regulate glucose levels by reducing its secretion of glucose in the presence of insulin. This normal reduction in the liver’s glucose production may not occur in people with insulin resistance.[3]
Insulin resistance in muscle and fat cells reduces glucose uptake (and also local storage of glucose as glycogen and triglycerides, respectively), whereas insulin resistance in liver cells results in reduced glycogen synthesis and storage and a failure to suppress glucose production and release into the blood. Insulin resistance normally refers to reduced glucose-lowering effects of insulin. However, other functions of insulin can also be affected. For example, insulin resistance in fat cells reduces the normal effects of insulin on lipids and results in reduced uptake of circulating lipids and increased hydrolysis of stored triglycerides. Increased mobilization of stored lipids in these cells elevates free fatty acids in the blood plasma. Elevated blood fatty-acid concentrations (associated with insulin resistance and diabetes mellitus Type 2), reduced muscle glucose uptake, and increased liver glucose production all contribute to elevated blood glucose levels. High plasma levels of insulin and glucose due to insulin resistance are a major component of the metabolic syndrome. If insulin resistance exists, more insulin needs to be secreted by the pancreas. If this compensatory increase does not occur, blood glucose concentrations increase and type 2 diabetes occurs.[4]. I hope this was helpful. Best, Nancy
No problem Rossa, I’m sure it was how I wrote it. There is no “Cutting pills”, only dissolving them as best as possible (solution and suspension). I believe I used the word “cut” also to mean “Lowering the dose”. So for example, at my most sensitive I was making my solution (Correction, my assistant Laura was doing the work because I can’t see well enough) and then “lowering the dose” by .00125ml (taking that much out and throwing it away), then splitting that liquid into three even doses, which I take at eight hour intervals (for me it’s 6am,2pm,10pm). Please don’t hesitate to ask until we get this clear. It occurs to me we all understand words in the context of culture and experience. I loved high school chemistry. Mr. Morrison used to ask me to play guitar for the class. People make all the difference. Love, Nancy
Hi Rossa, It’s always so nice to see you. People are told to split pills in a pill cutter (or using a razor). When we do that there is dust, and there are bits too small for the eye to see that are lost. Many people have no choice but to do that.It does mean that some of the drug is lost, so really accurate measurements are not possible to make. By diluting tablets in liquid (a solution is better than a suspension; a solution is when the molecules of the drug bind with molecules of the liquid. A suspension means the drug molecules are still distinct from the liquid. Many people have succeeded in tapering from suspensions, but they have to be careful to keep shaking the liquid to get the suspension as even as possible). When I began my taper from Klonopin (which is fat soluble; I use goats’ milk) I was so sensitive that my cuts were .oo125 cc’s. We really wondered if it was even possible that I could get off at all. But as time went on, I got stronger. Started sleeping better. Now my cuts are at 1 cc. That’s pretty huge for me. And they will get bigger. But as we get to the last 25mgs we will slow way down, and then slow down even more as we approach zero. When I’m home free, my assistant and I plan to write about it, but it ain’t over till it’s over. The people I learned to do this from have done a RTC of 180 people who were successful tapering off benzodiazapines. They are waiting for a patent (legal protection) and they will publish as soon as they can. I have applied the same principles to tapering from other drugs. I’ve probably over answered your question, Rossa, but I hope it was helpful.Best, Nancy
Hi Danielle, I’m so glad you wrote. Since I wrote “After Seroquel”, I have been very involved with psychiatric drug withdrawal, and while it’s very true that responsible research has not and is not being done. People are doing tapers and we are learning a lot. I am sorry to say that Dr. Breggin’s book on withdrawal is a joke to those of us out here in the trenches. We know that depending on the person, there can be enormous sensitivity, and that while some people really can withstand single and double digit cuts (1% to 10%) that those who are too sensitive crash and burn. It is a hell of a lot smarter to learn how to taper in steady microdoses, building up the cuts as the body gets stronger and then slowing down again as zero approaches. This is the safe way. I wish doctors would wake up. In the meantime we all have to start educating them. Even that, however, is of minor importance compared to the needs of the many, which is Right Now. I would be happy to communicate with you privately at [email protected]. I will continue on with some common sense observations for anyone else reading. Okay, so think about this; your body chemistry (not just “brain chemistry”) has changed in order to adapt to the drug. Withdrawal is traumatic to the body. Here are some ways we can reassure the body that it is not in crisis. Why is this important? Because when the body believes it is in crisis it also goes through adaptive changes. People sleep less (gotta be ready to run!), they feel anxiety (preparedness for acting on threats), fat storage patterns change (the body makes different choices to remain prepared for flight)…these are just a few. It’s not good to taper under those conditions. Splitting the doses into three eight hour doses (No Dry Cutting; you lose control over the dose) evens out blood sugar, blood pressure, and keeps an even dose of the drug passing through the liver in a 24 hour period. Addressing sleep issues naturally is critical. Being prepared to do that is of equal importance because the single most dangerous thing that happens in tapers is when people stop sleeping. Not only can’t they heal (you really need five and a half hours minimum) but people become suicidal, sometimes psychotic, and are often interfered with as if they were “having a relapse of “mental illness”. By being prepared to deal with insomnia effectively all that can be avoided. Strengthening the immune system is critical, as well as healing the gut, so it can absorb the necessary nutrients; equally important. Thanks so much for writing, you represent the new reality; Neuroleptics are being widely prescribed for sleep. I am beyond outraged. Best, Nancy+
Dear Lynn, I’m so sorry you are going through this. If I can be of any support, my email is [email protected]. In the meantime I would strongly suggest that you go on the low histamine paleo diet which you can read about on Monica Cassani’s website, Beyond Meds. That will help a lot. Best wishes, Nancy
Dear Claire, The answer is yes, you will sleep again. But supporting sleep is very important and when people allow themselves to get to a place of desperation (I know it all too well)we often wind up back in the clutches of medical people who only work with pharmaceuticals. Supporting natural sleep is both a science and an art. I still highly recommend Body Calm Supreme (140 strains of passion flower), which you can obtain through Amazon. I recommend it based on my experience and the experiences of many other people I have supported. Keeping your bedroom on the cool side, limiting stimuli several hours before sleep, processing the positives (counting your blessings) of the day, not eating after five in the evening……all these things have helped me and still do. In terms of supplements, it is critical to understand that your body has been stripped of B vitamins (and in particular Biotin and B12)and these vitamins are vitally important to the function of the nervous system. I take melatonin, many recent studies show that it supports the immune system. Some people don’t like it because of vivid dreams. I welcome that invitation into my subconscious. I also take unisom, a very mild antihistamine which helps me fall asleep and does not have artificial dyes. I suggest you do what you can to restore sleep naturally because it is the single most important factor in healing. There are many who belong to the “grin and bear it” school of thought. When it comes to sleep, I am not one of them. Now, to your real question regarding insulin resistance. In the absence of real research coming from the medical profession which profits massively from insulin resistance, we can only speculate. In the early days of my career as a true believer of the chemical imbalance myth, I gained sixty pounds. My memory of those years is spotty, but I lost it fairly rapidly by starving myself. I had a great deal of experience with that as a dancer; not the healthy route for sure. During the years I took seroquel the weight would creep up, and I would resort back to deprivation. I’m sure that took its’ toll, and I don’t recommend it. When I cold turkeyed off 100 mgs seroquel after many years of “consuming” it, my gut literally fell apart. The best thing I did for myself was to pay nearly 400 bucks out of pocket for a food intolerance test. In the two years since I have been recovering from seroquel, I have transitioned completely to naturopathic care, and even though there is no way I can sensibly explain “muscle testing” as a means of determining food reactivity, I am personally convinced that the results are accurate. Mystifyingly accurate. Along the way I have also explored orthomolecular medicine, accupuncture, and other energy based approaches. These journeys have led me to follow a low histamine paleo diet, and I have been doing this for over a year. What I have found is that removing wheat from my diet (American wheat has 52 chromosomes, it used to have 14) entirely has made the biggest difference of all. While before, I could not tolerate any dairy products, I now can enjoy them judiciously. I could not eat any starchy vegetables or any other grains, beans, or potatoes. Gradually that is changing. I only eat organic, and I do not eat any manufactured or processed foods (How I love John Cusak’s speech in in “Say Anything”). I don’t eat at all after five in the evening. I’m sure this sounds like a prison sentence to some people reading this, but let me tell you; anyone who has gotten to a place of abject terror over food comes to the place of eating to live instead of living to eat. What sounds extremely difficult becomes easy and routine, and feeling nourished and balanced is a far better reward that any momentary delight in indulgence. Having said that, I believe in moderation in everything, including moderation (Here I invoke the spirit of contributor John Shea)and occasionally I can be found at Baskin and Robbins with a scoop of Jamocha Almond Fudge and Mint Chocolate Chip, prepared to pay a larger price than the cost of the ice cream. The issue of insulin resistance is one that needs to be examined by the medical profession, but as an outsider looking in, in seems to me that the culprit has been the food industry since the nineteen fifties combined with the pharmaceutical barrage of symptom management. I personally suspect tha the changes in our food supply have made insulin resistance part and parcel of living in America. Can we heal? It depends upon what we mean by healing. If it means being able to return to the eating habits that brought us to this place, no, I don’t think so. But if healing means living more healthfully, the answer is absolutely yes. I hope this is helpful. You are fortunate, Claire, that you were only on seroquel for 9 months, but pay close attention to the forcast of a six to eight month kickback. If you’re paying attention, and you do have a resurgence of withdrawal effects during that time frame, you will be less likely to wind of going through unnecessary workups for things like fibromyalgia or MS. I’m convinced that we largely underestimate the body’s miraculous healing powers because we have been misled by those whose oath was to help us.
I think some of this is unfair. I read Dr. Shipko’s article as his own clinical experience, and by definition that is a small group. Dr. Shipko also clearly stated the need for research. When people start threatening suicide because they are upset by what an individual clinician has written, this puts the entire website at risk. Each of us, no matter how dire our circumstances, has to take responsibility for ourselves. Either we want these conversations to be frank and open, or we’re asking to be paternalized. Hope is something we develop within ourselves, something we hang on to that serves us, and one doctor’s clinical experience or conclusions is not taking mine away. Personally, I did not read Dr. Shipko’s article as recommending hopelessness at all, and I feel that the comments section fills out the picture.
Dear Dr. Shipko, While I very much appreciated your article, I was alarmed by the way you underplayed the dangers of benzos. It isn’t just the “dependency” or the dangerous withdrawal (not to mention disabling) that people need to understand, and which you did not mention, it is also the fact that dosage has to keep going up, and up, and up, if people are to remain on a benzodiazapine. This is very different that the case with ssri’s. I know people who can remain on a static dose of an ssri for many years if not indefinitely. Benzo tolerance requires increasing the dose continuously, and because they are controlled substances many doctors decide “not to treat” patients who then have to seek another “pusher” who often labels them “drug seekers”, and people often wind up cold turkeyed off high doses by the medical profession. Staying on benzodiazapines is not a realistic alternative for anyone. My partner read you ebook and made a case to me for “staying on” the benzo I am very, very slowly withdrawing from. From my perspective the prospect of remaining a prisoner to the prescription whims of an uneducated medical profession is a horror and infringement on my freedom that far outweighs the possibility that I may have to live with chronic pain. I’m already functionally blind from seroquel withdrawal, but at least I don’t have the indignity of continuing to be labeled “mentally ill” by doctors because of a prescription. I also don’t think you have discussed diet or other lifestyle issues that predispose people towards healing, or modalities such as accupuncture which has been very effective for me and many others I know in recovering from the effects of drug damage. I do want to commend you, however, in using the term “citizen scientists” because I felt it was respectful and appropriate. We are citizens (with the same civil rights as anyone else) and we are indeed becoming scientists, in the absence of the medical profession stepping up to the plate. Thank you for your article.
Thank you annonymous for expressing that you thought I was referring to you, Ron, and Rossa when I wrote “Those who want to go along to get along etc”. I wasn’t at all, and I appreciate the opportunity to set this straight. I could not possibly have any higher respect for Rossa Forbes, whom I have only known as someone who goes out on a limb for the sake of others’, and to the lesser extent that I know Ron, I would still have to say the same. Because I don’t know anything about you, I would not presume to make any judgements……and as far as being judgemental goes, who am I to judge? I think it’s important to keep this what it is, a civilized debate with some disagreement. This is not personal, but it is about people. The fact remains that the statistic I used comes from WHO, and the 25 year claim did not slip by anyone. Both Robert Whitaker and the Editor Kermit Cole read every single word. The editing that we did was on the title. In my last article we did a little more editing. I appreciate the constructive criticism, annonymous, I just don’t happen to agree with you. I think the truth is a higher number than 25, and I’m here watching it happen. As a matter of fact, I have seen other articles by professionals using this same WHO statistic, Jim Gottstein uses it in his presentations, and this is the first time I’ve seen so much controversy over it. I did not write my allegory for the feint of heart, I’m just not that kind of writer, but I will continually be open to feedback, whether or not it influences me one way or the other. I’m sorry you thought I was attacking any of you. I respect all of you too much for that.Sincerely, Nancy
Dear Rossa, thank you for your reply. I agree with you, the statistics are frightening (and our observation here in Alaska is that the statistic lowballs), but as you so effectively point out, statistics are not predictions for individuals, and without question the amount of care and close monitoring can make all the difference. Nonetheless the statistics don’t lie. Included in that onerous number are those who died in their teens and twenties as well as those who live into their seventies or even eighties. It is an average, and still a horrific one. I welcome this debate, and am gratified (thanks to my civil rights worker parents) to be stirring it up. As important as it is to remember that people are not statistics, they are individuals who have the capacity to make choices (even in altered states), it is also important to honor those folks who are unable to get off these drugs, so much has their body chemistry changed, and also those whose quality of life is enhanced, despite the health risks, to the point that their choice to stay on psychotropics represents an expression of their own best interest. That was not the point of my article, however. It was an allegory, and the number I used came from the World Health Organization.The question I have to ask is this, “Which is more frightening; to be told you have a brain disease you will never recover from that requires a life of disability taking drugs that make you feel miserable and sick(as I was told), or that the experience of distress and/or altered perceptions is something that many people recover from completely, or learn to manage with coping skills, and that while there is the option of taking drugs, they are neurotoxins that ultimately likely will shorten the lifespan if taken longterm?”. I would choose the latter, and I would assert that anyone considering taking these drugs has a right to know these statistics, no matter how frightening they may be. Informed consent is a basic right that no one should be denied. In an environment of trust and support we really could turn this around. The alternative approach is, ” Well now we know the truth but we should keep on lying because people will make bad decisions”, and many NAMI supporters take this tack, but in my view it is an unacceptable betrayal of basic human rights, and we have to work through this difficult transition without deceit.
Since last night I have thought a lot about how two of my readers wanted my article changed so they would feel more comfortable about how “others” would see it. This morning my reaction is more well thought out. First of all the allegory involves extermination. The men who discovered the rats who had escaped sought to exterminate them. The allegorical parallel is the long history of brain damaging “treatment” forced upon patients/lab rats which essentially do the same. A psychiatric label all by itself is a sentence of social, if not physical death. I’m not going to argue any further the point that neurotoxins kill. What I think is particularly interesting is how this point ruffled feathers because this is indeed the very schism in our movement about which I wrote. Those who want to go along and get along will take issue with what I’ve written, or suggest I needed “guidance” (which I found very condescending)in shaping my message to be more “politically correct”. Others who read it will undoubtedly cheer that I have the courage to tell the truth without kowtowing to those who seek to censor. This is the divide. I know many psychsurvivor activists who have given up hope on this site because they feel our voices are being silenced for the sake of mainstream psychiatry’s participation here. I have also heard members of the psychiatric profession say they will have nothin to do with this site because survivors are included and they feel it attacks their profession. What I love about what Mad In America is doing is that there is an integrity in its’ inclusiveness. There are many strains of thought here, and for some mine may remain a radical one. I am more than comfortable with that. At the same time, I’m also pleased to be in the great company of scholars and practising mental health professionals with high ethical standards. I believe that this is what makes for movement forward.
Point taken Ron, however the people I have known have died from bowel obstruction due to the drugs, and other organ failures ignored while hospitalized. While at PsychRights, the deaths I have witnessed have had to do with people not taking care of themselves because they were too drugged to do so, or homeless while under court ordered forced injections…..I could go on. So while I agree that I might have written that point in a different way, I still believe the evidence is strong that it is either directly or indirectly the drugs. And frankly, Ron, I simply don’t think it is possible to be too dramatic about what is happening. I think much more dramatic action needs to be taken because standing in front of APA conventions chanting, “What do we want? Human Rights. When do we want them? Now.” just isn’t working.
Dear jm77, It has been over a year since I wrote this article and I have found
that James Harper,the founder of The Road Back Health, is far from an expert in protracted withdrawal. I am unaware as well as uninterested in his religion, be it Scientology or other. He is a nutritionist who has done excellent research and I continue to benefit from several supplements the company sells. Perhaps the most important two are the JNK Aminos and Body Calm Supreme (140 different strains of passionflower). I am sorry you have had bad experiences with a religious group, unfortunately this is not an uncommon experience. I don’t boycott the Salvation Army because I don’t agree with their religious backers. Don’t shoot the messenger. I hear that you have had bad experiences but I also think your advice is dangerous as well. Until doctors are fully informed about withdrawal, tapering, and protracted withdrawal syndromes they are, in fact very dangerous, as are the rehabs which push drug substitutions without the least bit of understanding of the physiological processes involved with each drug.The problem remains as I originally stated. The complete lack of research. The tragedy of completed suicides in the aftermath of drug discontinuation is a very serious issue, and I appreciate your bringing it up. I have also seen this, and have lost friends this way. There is no excuse for doctors prescribing drugs that they cannot help people safely withdraw from, and there is a desperate need for services; places of refuge,support in withdrawal, etc. Thank you for your 2 cents.
Sandra, first let me thank you for your research. It means so much to so many. Secondly, if you have not read my piece, “After Seroquel”, I would rather not repeat myself except to say that the result of my withdrawal has been blindness (worse actually; corneal nerve damage, a condition over which many people commit suicide,and fibromyalgia. The real reason for my comment has more to do with health freedom and the UN convention on the rights of persons with disabilities. As much as I appreciate your caring attitude, this paternalism (or perhaps in this case maternalism?)leads you to believe that informed consent is a process. It isn’t. Either people are informed or they are not, and when they are not, this is a violation of their rights. I know I’m sounding black and white, as if I don’t understand what all is involved. In fact, I’m educational director for PsychRights, and what I do is to listen to hundreds of people per year (it has been since 2009). People who have been lied to and whose basic trust in physicians has been irreparably torn by the denial of their right to informed consent.That “process” you may have been alluding to means one thing to you. To another psychiatrist it may mean saying that ECT is “safe and effective” (as was said to me; it isn’t. I lost all memory of years with my young children, and an entire body of music I had composed).Perhaps a better example is the chemical imbalance lie. The rationale was supposedly caring. There really is a bottom line here, and the UN has made it law. We have a right to the truth and the whole truth.Psychiatrists will have to learn to handle their fears and concerns just like oncologists whose patients may choose not to make the decisions they think are best. This will not be an easy transition and the shape of our systems will have to change and adapt, but the denial of basic human rights to informed consent is not a process.
Thank you, Leah. Jim (Gottstein) read this article to me and I’m heartened by your leadership on the issue closest to my heart. Victims have a right to justice and perpetrators have earned the right to the same consequences as any other common criminals. Jim struggled over the decision to go and confront Torre(sp?). I have been so sick (as a direct result of psychdrugs) that he was afraid to leave me. We both decided that this is a war that has to be fought, no matter what. We decided that it would be better to regret going than not going. There was some behind the scenes communication between the Heritage director, Stuart Butler, and Jim which did, to some extent I believe, set the stage. The presentation was obviously toned down, and Dr. Sally was clearly quite nervous. Jim had gotten permission to film and they knew this would be on youtube. My favorite moment was when Dr Sally admitted that she knew nothing about Open Dialogue…..and therefore has not read, “Anatomy of An Epidemic”. Now, if she really were concerned about science, or suffering people, or even drug company fraud affecting “patients”…..she would have done her homework. She didn’t. This is how it always goes with religious cults. Don’t read both sides of an issue; you might change your mind. And THEN WHAT? So instead she offered this (in a voice nearly swallowed), “Well I don’t know about Open Dialogue but I would question whether our same rigorous standard of measurements was applied” (OK so I may not have it word for word, but I’m close). YOUR RIGOROUS STANDARDS?????? Let’s see. We have the FDA panel suggesting you actually DO research ( as if Breggin’s 1985 APA address never happened)) on electroshock, and we have ghostwritten articles supporting research done by drug companies……..I’m wondering to what she was referring. I also enjoyed the squirming of the Doc beside “Fuller”. Ah, how he and Dr Sally loved Fuller. It was like a dysfunctional family dinner. I doubt the audience missed the continual fact check that took place after Fuller spoke each time. All in all, it seemed like a success…..except that Daniel Hazen didn’t get to handcuff himself to something. Don’t worry, Daniel, there will be more opportunities. Thank you Leah, and thank you, Ted, for your comments. In Solidarity, Nancy Rubenstein Del Giudice
Dear Altostrata,Thank you for the wealth of information and resources you have generously provided for the readers of the piece I’ve written. Thank you also for giving me the specific opportunity to go a step further and say what really needs to be said. If you’ll notice, this was an op/ed, not a “Survivor story”. I’m sure you meant the very best in saying, “I’m happy that you’re healing”. It didn’t come across as I believe you intended at all. It felt like you put a happy face sticker on me. Mine is not a “survivor” story, it is a “Victim” story. First of all, you have made the assumption that I am healing. While I like to think that….hope is a better word…..I now have fibromyalgia and can barely move. Before I withdrew from
the 300mgs of seroquel, I was a NIA instructor, a vegan, had an extensive social life and loved to travel.I never in my life had known the terror of continued sleep deprivation. As a professional dancer (ballet/Jazz) beiginning in my teens, I have taken excellent care of myself all my life. Solely because New Hampshire’s Dr. Karl Lanocha took advantage of me when I was in despair over the imminent end of my long marriage and sold me the chemical imbalance/ drugs like insulin for diabetes lie, I am an invalid for life at 56. Let me be more specific about Corneal Neuropathy. It is 24hr pain. Even with my eyes closed most of the time (air hurts) the pain spreads to the bones in my face and by three in the afternoon, the headache is so bad that I am horizontal. This condition is considered by the world’s leading expert, Dr Perry Rosenthal at The Boston Center For Sight, to be “permanent and progressive”. Before patients are seen for this condition, they like people to see a psychiatrist (sic) to determine to what extent they may be suicidal. I’m not about to sugar coat this. Altostrata, please forgive me if it seems like this is directed at you; it isn’t. The point I want to make is that there is a gap in our mental health reform movement that I think is a symptom of a larger phenomenon. The denial of Victims. As long as this persists, the perpetrators will not be brought to justice, and the Victims will continue to be disappeared; in institutions, in hospitals, homeless, and in unmarked graves. I am not intersted in standing by while the “Mental Health” profession turns to new markets and engages in turf wars. This is genocide. This is not about medecine. It is about murder. Nancy Rubenstein Del Giudice
Dear Vabossnurse, Thank YOU for sharing YOUR story. I wrote this article hoping to get the ball rolling on this topic.Of course it isn’t a topic, it is your life. Three years ago I was in the place you are……but I can tell you some differences between us straight away that may weigh in your favor. First, my last dose was 100 mgs, which I now realize was ill-advised. Also, I had a radical hysterectomy about three weeks later. I was completely uninformed about hormone replacement. I think Malene’s response above is excellent advice. As I mentioned in my article, James Harper’s book was my essential guide, and had I not run out of money for the supplements recommended, I believe things would have gone far better. I use their amino acids, Vitamin E, passion flower (for sleep) and biotin. Harper’s book is available free online. As difficult as this is for you now, clearly you have made an informed decision, and staying positive is crucial. For me and many others, becoming an activist to help others has allowed me to channel my outrage. The survivor/activist community really saved my spirit. You are in my prayers. Nancy Rubenstein Del Giudice
So which is it? “ADHD” is real, or it’s not?
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The only thing I can add to the already great comments is; Decolonize the Decolorizers.
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mattcolburn, Interesting how those science courts in history never work out……currently Peter Goetzshe MD just got kicked out of Cochrane. They caved in to “public perception”. So much for them being the independant court on drugs and medical devices. Expecting justice from human beings is problematic.
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Lol
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Great point, Rachel777
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well said, Oldhead
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Lol madmother, I share your opinion
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Out, I apologize for my tone…lol
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Hi Oldhead, I did discuss it with one of the admins, but this is a different time. …….let me consider.
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And here’s the connection between Julia Ruckledge and Empower Plus;https://www.ensele.com/micro-nutrients.html.
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Here is an example of what you will find on TrueHope, this is the formula to which both of us reacted badly. Interestingly, I suggested in emails that I had a problem taking anything with B6 in it, and Teresa ( supposedly The “Medical Director”) talked me into taking it, assuring me that it is essentially safe for all human beings dependent on dosage. Anyone who knows anything about drug withdrawal knows that isn’t true, many people react badly to different vitamin cocktails. For this reason, many withdrawal groups have warnings about supplements. https://psychcentral.com/blog/truehopes-confusing-message-empowerplus-q96-claims-to-treat-bipolar-adhd-depression/
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Good afternoon Out, You got the facts right, I believe I included plenty of information for you to follow up on, should you desire. The unsupportable claim is that mental illnesses are determined by nutritional deficiencies. A woman who is given the diagnosis of whatever (Schizophrenia/Bipolar etc) after years of abuse does not recover because she is given a vitamin cocktail. This is the old argument between the Psych professions regarding causation. The ironic thing is that I agree with TEDx, but not for their reasons. Ruckledge’s work may have many positive contributions to the field of nutrition. My concern is a lack of accountability tainting research results, and a continuation of systemic abuse.
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I really enjoyed this article , I will source it when I write my piece about the Psy professions as the religion of the state. Thank you, Dr. Schwatrz
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Dear J Doe, Thank you for this excellent article. It is a major contribution. My psychiatrization also began with Xanax. It was “safe and effective”…..so I was “mentally ill”. How many millions?
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In response to the person who asked “Where is the outrage”, I would answer that outrage is the new normal….which means most people don’t feel triggered to act……fear immobilizes. I take a different view of what’s going on. The writing is on the wall for the end of the pharmaceutical industry because of 3-D printer technology. Patents have run out, or they are running out, and the drugs are being exposed. In Europe more change is taking place; moving away from diagnosing, recommending low dose short term first break intervention….from the standpoint of Bigpharma, all this spells the end. They have the American public in thrall, whipped up into a frenzy over mass shooting….this is Disaster Capitalism. The court systems’ reliance on psychiatry gives the special interests that control our govt the safest way to get as many of these drugs into as many people as possible. Force ’em before everyone figures out what’s happening…….so while we sit here and discuss how little therapeutic gain is to be had, what all this is really about is money. The American public is the perfect target, and not even a moving one.
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“not generally acknowledged”???? More like suppressed for the benefit of the chemical imbalance theory.
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Fred, Thank you for such a beautiful tribute. I remember how much Bonnie wanted to something with an RV! She had so many, many great ideas. I don’t think many people realised how sick she was. Even back when I first met her in 2009, she had crippling arthritis. It’s so gratifying to hear you say that she changed your perspective on activism. I’m going to quote you on activism, no one could have said it better. Again, thank you. This is exactly what I was hoping might happen……and it is really quite amazing that I’m sitting here writing to people I actually know quite well in important respects, although I don’t know you outside this forum, I do know Judy, and Maria, even Frank from several other organisations and this feels like community. This is good.
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When I read Psychiatric Times, I often put myself in the position of being a first year resident, or a medical school student. What really strikes me is how often “anti-psychiatry bloggers” are mentioned and how they are discussed. I can’t imagine anyone coming there and thinking, “Gee, how well reasoned and fair this is. Well, of course, because this is Psychiatry and it’s all about understanding people”. The tone is decidedly eighth grade. “She said this about me, how dare she say this about me. I’m not talking to her or her friends at lunch, and I’m definitely not texting her anymore, so there”. I suspect the effort to enlist more psychiatric residents may well be increasingly difficult.
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Y’ALL, Here is another disturbing line from the press release; “The Skills for Life program also includes two other major components – mental health promotional activities in all schools and referrals to mental health specialists for children with the most serious problems – which were not the focus of this study. ”
If I am not misreading……….what does “which” refer to; the children, the serious problems? It sounds like there was a washout of the kids considered to be most troubled. But the wording bothers me…….what was not the focus of this study? This is really seriously scary ground…..
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Agree, AA, and Stephen Gilbert. The key phrase in the press release is “there is evidence that non-pharmacologic can be effective”. Inherent in that statement is that drugs are the first line of “defense”. Also buried in the press release is a statement about how this will serve as an opportunity to refer children to specialists. Interestingly, just this week a young adult from Chile contacted me regarding seroquel withdrawal. This person spoke at length about the lack of drug awareness in Chile. I see this development as being very similar to the Chicago Boyz’ coup………a major human disaster.
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Dear RichardFleming, Thank you for taking the time to write about your experiences, I hope you will continue to contribute…perhaps even submit a blog? This community gets richer and richer…..
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Walter, The climate in the legal profession discourages it. I’ve had people back out of internships here because of harassment. Follow the money.
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Point well taken, AA.
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Really B? It’s the opposite for me. This chills me to the bone. Sandy Hook (Newtown) served as the perfect disaster capitalism of Bigpharma. Columbia University’s admission of a false positive rate of 80% on Tennscreen is lost information. The horror of this….the trajectory of massive numbers of teen psych drug hangings from akathisia makes my blood run cold.
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Dear humanbeing, I always enjoy reading your comments on various articles, and I think your moniker represents you well. I had to laugh when I read your comment because someone asked me the other day “how” I write, and I answered, “It is often something akin to vomiting”. So people can say this is well written, but I think you have my number.
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Sharon, Thank you for commenting. Could you elaborate? How do you envision the next step? What would that look like to you?
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Hi Fred, I’m very interested in doing workshops and presentations, I would love to do something with Ted. The limiting factors for me are money, travel, drug withdrawal and nerve pain. As most people who have read my first article, “After Seroquel”, know…..my eyes are very painful. I can’t simply “look” at a link or explore an opportunity without help from other people, I think these problems can be worked around, though, and I most definitely see a future in doing presentations.
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B; Agree, and by the way, I settled for the word Corporatocracy. Fascism was my first choice.
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I prefer you this way, too, Frank. Thank you for your comments.xoxo
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Hi B, I am a consumer of Chiropractic, Acupuncture, Homeopathy (which is not placebo, and most homeopathic experts would be very disturbed to hear that a practitioner is suggesting that it is ), and Naturopathy. They most definitely are against many things like poisoning oneself, and ignoring causes in favor of treating symptoms. Tell sixteen year old Cassandra, whose family chose natural treatment for cancer and lost custody, who is being forced into chemotherapy in Connecticut against her will and separated from her family…….feel free to tell her, her family, and all the activists organising on her behalf, that only psychiatry oppresses. Still, thank you for your comment.
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Dear Ted, Thank you for your comment. You are my comrade in arms.
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I meant Point well taken, acidpop5. Chrisreed, you name a very real issue, the problem is, as always, what will fly in a court of law. At PsychRights, we have taken medicaid fraud to federal district courts of appeal, and essentially the response has been, “The government knows about the fraud and doesn’t care”. I am ever hopeful of change but it is going to take more lawyers, more recognition of the need for change, and more whistleblowers.
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Point well taken.
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Thank you for this wonderful article, Tina. I’m encouraged to see this in Mad In America, especially because of an article I wrote two years ago called, “What Do Psych Survivors Want?”. Long story short, after polling a number of groups, the answer clearly came down to two things; validation that they/we are torture victims, and restorative justice. MIA would not print this article, but the The Journal of Critical Psychology, Counseling, and Psychotherapy (published in London) did. I am very encouraged to see that MIA is getting somewhere on this critical issue. It is not enough for Psychiatry to admit to misleading the public, and reform coercive practices. Some people write about about the “social harm” that Psychiatry has caused, but I find this to be essentially a euphemism. A way of avoiding the naming of the reality that crimes against humanity have been perpetrated against persons. Persons with rights, involving the rights of redress. Thank you Tina.
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Dear DanielleZ23, Thank you so much for writing. After seroquel, I went into to interdose benzo withdrawal, wound up switching to Klonopin and beginning a liquid taper. I’m still tapering from 1.5mgs, down to .8. My advice to you is to switch to liquid taper. When we dry cut, we lose control of the amount of the drug we’re getting, and as you now know, every tiny bit counts. Liquid tapering with micro cuts daily allows the body to heal at the rate of withdrawal from the drug. My current daily taper cut on Klonopin is .00625 mgs. That means that it will in the end have taken me many years to accomplish this, but it assures that I’m going at the rate my body can handle. I also want to share with you that diet makes all the difference in the world. In the closed facebook withdrawal group I have been in for the last two years, almost everyone is on the paleo diet. Eating organic, eliminating processed foods, and getting grains and legumes out of my diet (carbohydrates) has made a huge difference. There are many paleo websites. Many people report that paleo resolved insomnia for them. For myself, I couldn’t really say because of many other things I’ve done. Acupuncture also helped me enormously. Whatever you can do to improve your general health and immune system is going to support withdrawal. Don’t lose hope, I have seen so many people recover.
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Hi Keren, I hope you will receive this note. When I wrote this article in 2012, I believed in the 10% rule. After three more years of study, I emphatically do NOT. Yes, 10% cuts work very well for many people, but many people become disabled by 10% cuts. Liquid titration allows you to listen to your body and find the cut that doesn’t throw you into severe withdrawal symptoms. Everyone is different.
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Deargodlovesme, I have just read your post of a year ago, and I want to thank you for sharing your story. I appreciate that this approach has been helpful to you, and I think it’s important that people have informed choices. I did not. I was lied to. Many people are, and you have been fortunate to be able to make this decision with real information available, and without coercion.I hope you are able to support your body through diet and supplements while taking these drugs, and that you have a safe withdrawal plan in place for when you are ready to come off. I recommend the site Beyond Meds as a good place to start.Best Wishes for a healthy future.
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Dear Chendri887,
Thank you for your thoughtful reply. If I can be of service helping you find someone, PsychRights does compile a listing of vetted “safe practitioners”, and I also have access to The International Society for Ethical Psychology and Psychiatry. The thing is, the real gold is the place where you tire. Where you want to quit. That place where you feel disempowered, violated or “f-ing confused”. Confronting that with someone and moving through it, instead of abandoning ship; that is the messy place where the real work gets done. Essentially, every relationship we have is a mirror of the relationship we have with ourselves. A friend of mine, a Jungian psychoanalyst calls this work “following the red thread”. His name is Michael Anaavi, and he has a book available on Amazon called “The Trusting Heart”. Michael looks at the places where we disengage, the moments where we move to avoid, or distract. Those moments in time often hold the key to moving through obstacles. Because it is relationship that you speak of; the way you perceive your relationship with your mother, “real friends”….these are issues better understood through exploring relationship, and a “therapeutic” relationship could really be a great way to do that. On the other hand, being realistic, “therapy” is not for everyone. There is an inherent perceived power differential, and power is something you have been talking about. No matter how you shuffle the cards, one person is getting paid, and one isn’t. One person is perceived as “having it together” and one isn’t. For many people, including myself (as a matter of fact), that power differential is insurmountable. Life is difficult for everyone, and I appreciate your willingness to be vulnerable. Vulnerability is the requirement for courage. Here is my last word on the drug issue. You will hear many people taking drugs talk about how much they are being helped. You won’t hear the perspective of the people who live with them, or what becomes of them later on, or when they try to withdraw, or encounter unwanted coercion and dependency.. You will hear people talk about how they were successfully helped for a period of time, but you won’t know whether you will be lucky enough not to wind up in a horrendous protracted withdrawal. And the bottom line is that your emotions, difficult as they may be, are yours’ to work through. On mind altering substances, your thought will be altered. Thank you for considering what I have to say, if you would like to contact me for any resources, my email is [email protected].
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Dear Soggyboy,
I was trained as a psychotherapist at Tufts University, I write for The Journal of Critical Psychology, Counseling, and Psychotherapy, and counseling is the large part of my job as Educational Director and Volunteer Coordinator at The Law Project for Psychiatric Rights. I do not receive any compensation for the work I do, other than the great satisfaction of being of service. I do not counsel people online. I do however, connect people with resources online. You are welcome to report me to anyone you like, if that makes you happy.
I agree with you that in the difficult risk benefit analysis, that taking seroquel or another antipsychotic can be the best choice under specific circumstances, and I defend an individual’s right to make that choice freely. Some of the people I support have made that decision, although reluctantly, but in nearly 100% of those cases they recognise that had they not been drugged in the first place things might well have been very different. There are far better alternatives. Brain changes that take place when people are drugged are often irreversible.
I have zero tolerance for people coming to this forum, specifically the forum of an article that I have written, and suggesting that people contact them to recommend taking drugs. If you don’t like that, you are free to leave.
The fact that seroquel is a toxic drug is indisputable, not my opinion, not my emotion. If you are interested in my feelings and emotions, I wish that drugs that gave people relief were not toxic.
I hope that you are indeed one of the lucky ones who are able to discontinue seroquel without consequences, but after five years of listening to people who have come off seroquel at the level you were on (900mgs), my experience has shown that until you have been off for three months you will not know. Some people get into trouble six to eight months off. There is no research, only those of us in the trenches hearing from people in large numbers.
On the subject of seroquel and suicide; seroquel lists suicide as a side effect. And that was the effect that all psych drugs had on me personally, they caused me to have suicidal ideation, which I had never before experienced. My journey with psychiatry began with being prescribed prozac during a divorce, and my adverse reaction ascribed to a bogus underlying neurodegenerative disease which I must have had ” because I was an artist”.
Mad In America is not my website, I am a contributing writer. This is my article. It is a place where people are safe from being lied to about diagnoses and drugs. It is a safe place for people to express themselves without being labeled. You have attempted to have someone contact you for the pursoe of convincing them to take a drug, and you have labeled me “mentally ill”.
Regarding your calling me “mentally ill” and “in need of medication”, I sincerely suggest that you reconsider this attitude towards anyone or consider another field of study.
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Dear Chendri887, There is no such thing as someone who “benefits” from a neurotoxin without side effects. The side effect is a shortened lifespan. That is the unfortunate reality of what it means to take a toxic drug. Eventually it will kill you. Some people do choose to do this, I hope you will not be one of them. All of the issues that you are talking about are things you can work on in therapy, if you can find someone you are able to trust. What I see as the obstacle is your sense that anyone would reject you if they understood how powerful you could be. I honestly don’t believe that is either a true statement, or even something that would be possible for you to know about someone else. But I can only speak for myself as a therapist (an unlicensed one). I work with people because I want them to be successful. I benefit personally from witnessing the journey. I want them to find what they are looking for, become the people they want to be. I support their process. And I truly believe that most people who become psychologists or therapists feel the same way. I am not afraid of anyone being more powerful than I am, or doing somthing better than I do, because life is not a competition. There is room for everyone to be the best that they can be, to make the choices they want to make. I hope you will consider the double bind you have put yourself in. On the one hand you feel horrible about yourself and are filled with fear, and on the other hand you harbor feelings of superiority. I don’t think any amount of pharmaceuticals is going to bury this conflict, and I urge you to look straight into the fire and untangle this difficult quandry. Best Wishes.
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Thank you Dizzi, I took my 97% stat from a vascular surgeon, and the cornea stat from the Boston Center for Sight. I am no expert on either subject. I believe the 97% stat was in regard to serotonin, but on both subjects I defer to the more educated. Regarding “research your disorder thoroughly”, I’m sorry but that is nonsense. There is no science on any of these so-called disorders, on that account, I hope you will apply your considerable intelligence to getting to the bottom of that. The idea that “Bipolar Disorder” is a life long illness is pure propaganda that protects the pharmaceutical industry from the blame of creating chronic customers. Every year thousands of young people have a singular manic episode for a variety of reasons, and only those who are “guided” into psychiatry have this “lifelong illness”. If everyone who had one or two manic episodes and then went on to a successful and productive life came out of the closet, the field of psychiatry would have to raise the white flag and disappear.
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You may, but I will be straightforward for the benefit of other readers. There is enormous controversy regarding supplements in withdrawal. James Harper is a nutritionist who denied for many years the existence of protracted withdrawal syndromes, and continues to adhere to a one size fits all approach. I can no longer recommend his book. I can share what I have done, but I would have done differently, so I’m not sure how helpful I can be. Still, I am happy to connect with you at [email protected]. The safest approach, in my opinion, is to work with a good Naturopath who is knowledgeable or willing to learn about psych drug withdrawal, who can test for both deficiencies and food sensitivities. Beware any group that benefits from the sale of supplements, including Point of Return. I hope this helps, Mino1………time is the best healer, and eating an organic low carbohydrate, high fat diet. Best book; Grain Brain by David Perlmuttter MD, nutritionist and neurologist.
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When Richard points to these particular diagnoses as scarlet letters, I feel the need to underscore that. Timothy Kelly may be blind to the reality that holding up a signs that says “I have Borderline Personality Disorder” is exactly the same as holding up a sign saying, “Stay far away from me, I will wreak havoc”. Holding up a sign that says “I have Bipolar Disorder” translates to , “I am Dr Jekyll and Mr. Hyde and I may murder you in your sleep”. There is no excuse for this kind of labeling, none at all, and convincing vulnerable people to identify in this way is the worst possible brainwashing I can even imagine. Brainwashing like this always serves someone else’s agenda, and an agenda like this must be fought tooth and nail. Bravo Richard Lewis, for your well reasoned arguments, your wonderful historical context for the fight against oppression, and thank you for the mention.
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Hi Timothy, Thank you for your excellent article. I also really appreciate the discussion. My take on this is that while everything you discuss here about analysis and psychosocial understandings is relevant and critical, there are larger forces at work, whose agenda is very different from yours’, mine, and ours’. To speak about the drugs as if we were really discussing inert chemicals is to obscure the reality that there is a powerful corporate agenda at work. A corporate agenda that laughs at these discussions because they provide distraction. Meanwhile, Thomas Insel makes clear to world leaders that “we” need to ferret out the brain diseased worldwide and subject one and all to our brand of “treatment”. This is not about concern for people, or questions about etiology, this is about market share and profit. I think it is profoundly naive to imagine that in this world of growing corporatocracy and oligarchy that the prevailing forces really are affected by anyone’s understanding or scholarship. They are not. It really does not concern the medical pharmaceutical insurance complex that more people are disabled. Captive audience. I have been covering medical kidnappings for three years now, as well as “child protective services” round ups of sick kids for pharmaceutical research, and they get bolder and more brutal daily. I support Ted C’s analysis that the focus on civil and human rights needs to take the forefront. Regarding the tone police, I hope you will ignore them as I do. The drive to tell other people how they should express themselves is not one that supports freedom of speech. Thanks again for your honest and thoughtful contribution.
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The people who are “shocked” are those who have not been listening; to people, and to science.
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Dear Sleves, I can’t find you comment where you claim that depression causes brain damage (the existence of Abraham Lincoln’s presidency alone would discount that possibility) but the fact is that the NIMH denies this. The NIMH makes clear that there is no gene, no lesion, no image to prove the existence of any mental illness (again not to deny suffering and/or altered states), and it is on the basis of this complete lack of evidence that Rdoc has the go ahead for billions of dollars in research. Allen Francis (co author DSM4) states that there is no reason to trust any research out there. This myth that there is evidence of neuro degenerative disease has been promulgated by drug companies, if you have proof otherwise, please post specific studies for the purposes of this discussion. The studies I have read claiming brain shrinkage and basal ganglia enlargement in “Bipolar Disorder” were done on people who had been drugged for years, and the recent studies on neuroleptics have shown exactly that; brain volume shrinkage and basal ganglia enlargement. Perhaps the rebuttals seemed intelligent to you, but to me they were desperate, filled with character assassination, and lacking in substance. The Boston Globe hired a Boston area pediatrician to do the job, and at Dartmouth psychiatric residents were threatened if they either read the book or attended a lecture. Intelligent? Hardly.
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“failed the no medication experiment” demands several critical questions. #1 How long had the person been taking a neuroleptic, brain changes are observed after only a few hours in some people…..and the neuroleptics are documented to predispose to “relapse”. #2. Was the person withdrawn abruptly vs. being slowly tapered, discontinuation and withdrawal syndromes are routinely viewed as “relapse”. #3 what underlying issues were unaddressed; inflammation/allergies, nutritional deficiencies, actual pathologies (Lyme’s, etc)……The “no medication experiment” as undefined means nothing. Regarding “uncurable illness”…..I honestly can’t even imagine how someone could suggest this to another person without one shred of medical evidence. Might as well say, “you have an invisible illness, and it will never go away”…….umm, that is what you are saying. The selling of low expectations is a huge part of our burgeoning disability rates.
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Dear Sleves, I have been reading these comments and I have come to the place where I feel you are disingenuous. I personally offered to provide you with resources to understand that civil rights violations of people diagnosed are endemic and a matter of course. Your choice was to ignore that continue to make fallacious claims about the legal system. The reason I am responding today is that I am offended by your invalidating response to someone here. You wrote,” I haven’t witnessed antisocial personalities in the mental health field so far. I’m sorry that people here report that they have.”. This kind of invalidation (“people here report”) is very telling, and of the kind psychiatric survivors can spot a mile away. This is not a personal forum for you to face your own cognitive dissonance. Many people, including myself, have reached out to you and offered educational opportunities and resources. Please take advantage of those. I assure you that once you do, you will look back on this conversation with some regret and remorse. Again, The Law Project for Psychiatric Rights (PsychRights.org) is at your service.
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Hi Sleeves, I have been sitting back reading your comments and allowing for others to respond to your rose coloured perceptions. I understand that you are passionate about your work and that you believe in what you do. I also believe that you are a compassionate person whom any patient would be fortunate to have serving him or her. Unfortunately your naivety regarding the role that psychiatry plays in our courts and in society in general is holding you back from seeing the bigger picture. I am Educational Director for The Law Project for Psychiatric Rights. Our website is PsychRights.org. I would be most happy to continue a discourse with you privately. My email is [email protected]. Best Wishes.
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Hi Sleves, Thank you for posting. I agree that there is a great deal of anger expressed in these comments, but I think you would have to walk a mile in each person’s shoes to judge whether or not it is appropriate. Since you speak about me, I will respond. I sought support after the death of a child, was put on xanax and became suicidal. I was never suicidal without the help of suicide causing drugs. I lost my family because I was suicidal on suicide causing drugs. End of story. Regarding the idea that psychiatrists only “help” people who want help, that is simply untrue. Forced psychiatry is the norm.
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Hi Vivek, I’m one of those survivors out in the trenches of the protracted drug withdrawal community. Since my esteemed colleagues have already done such an excellent job providing you resources, so you can learn the entire ugly truth of this public health nightmare, I only want to chime in with my thanks for your writing this article. I have been working as Educational Director and Volunteer Coordinator for The Law Project for Psychiatric Rights for the last four years, and aside from our litigation work, psych drug withdrawal has been our focus, partially because I have spent the last six years in withdrawal myself, with possibly another year ahead of me in my liquid titration from klonopin. The dangerous misinformation we are getting from well intentioned psychiatrists is actually more of a problem that psychiatrists who know nothing. I have been working in conjunction with a few other organisations to build a safe practitioner list, and I am at the point where I only accept people who are willing to “partner in learning”. The situation is desperate. I hope you can, in some way, help to get the ball rolling.
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Dear Audrey, Thank you for your article. I have been liquid tapering from klonopin for two years now and it looks like it could be another six months to a year, which will bring the total to three years tapering from 1.5 mgs Klonopin. Unfortunately, tapering and healing from benzos can take years for many people. The rate of tapering of 5% or 10% leaves some people devastated. As much as you went through hell (and trust me, I know), I’m really concerned that someone might read this one account and wind up trashed because they followed what worked for you. I’m also concerned that people reading your experience might turn a suspicious eye towards those suffering for years. This is a huge problem for people in protracted withdrawal; the pressure from people in their lives who cannot understand this devastating iatrogenic illness. I urge readers to learn about liquid tapering (no pharmacy will help, it’s a technique that once learned provides control) and to play close attention to what your own body is telling you. Insomnia is a sign that one needs to slow the taper down or hold till it subsides. Thank you again for your article, Audrey, and best wishes.
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Frehley, I’m glad Julie responded because I was stuck in my definition of “functional”. I guess functional is as functional does…..lol. Under “psychiatric care” I lost everything. I rarely left my home, slept enough for three people, and had no relationships with my children who had been taken from me. I had hospitalization after hospitalization for drug induced suicidal thoughts and actions. Imagine what this costs the taxpayers.Normally a person of Faith, the very concept of religion seemed irrelevant to me. I was, however “functioning”. I was a cog in the big corporate wheel which depended heavily on my continued consumption of medical services.In the five years since I walked away from “treatment” and gained my freedom, I have built a deeply fulfilling career serving Psych Survivors, writing articles, and composing new music (still don’t remember the body of work written before electroshock), I am getting married, have found closure with my ex-husband, and one of my daughters considers me her best friend. This is not functioning, this is self actualization.
I have so much for which to be grateful. Am I “healed”? First of all, when someone tells me they are “healed”, I think “Well nothing more to talk about here”. NOBODY is healed. Life Kills. I had to get over the idea, and I have to endlessly affirm that it is not true that I can ever go back to feeling the kind of safety I once felt in the world, or any sense that events will conform to my desires. I am not the same person. But I love the person I have become, who gets to jump out of bed in the morning with a million questions. The person who turns to her God to find her center. The mother who can drop everything for her children. The partner who can deeply love despite so much tragedy and heartbreak. Am I healed? No, I may yet be facing another year of withdrawal from my last drug. My body hurts like hell. Insomnia is the ruler of my kingdom, I rarely leave the house. Am I functional? Hell Yes.
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Dear Frehley13,
I am sad to report to you that I know of no physician in the USA I can recommend at this point. Please, people reading this; if you know of physicians who are willing to partner with people in learning about safe withdrawal, I NEED THOSE NAMES. Everyone is different, the misinformation
I hear from doctors at national conferences is leading to chaos. At this point, my rule of thumb tends to be that if a doctor claims s/he “knows” about withdrawal…….that doc may be more dangerous than one who is willing to learn. Since you are in Florida, you may have some luck contacting CCHR in Clearwater. Laurie Ansbach (sp?) is the person I know best there, and she might have a resource. I wish you the best, my email is [email protected], let me know what you find?
I know this is discouraging to read, but the bottom line is that educating yourself and being in control of your taper is far better than finding someone who may or may not help. At this point in time. Docs who are open to learning…….OR (and this would be my way to go) a Naturopath working with a Nurse Practitioner. If you can find an “integrative” practice that includes acupuncture…these are people who understand that drugs are not the answer, and more and more I am finding that they are helping people in psych drug withdrawal.
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Julie Julie Julie…..”mental illness” or so-called “mental illness” puhleeeze?? And Thank you so much for the added trauma insight!
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Dear DV,
If there is any way you can enlist the aid of natural practitioners, that’s the avenue that has most helped me. Especially acupuncture. We are energetic beings and acupuncture has thousands of years behind it, working with the electrical output of the body. Diet is the primary way of healing. Be careful with exercise; you don’t want your body to slip into fight or flight….because that can trigger insomnia. Connect with nature, that is soooo important. Monica Cassani’s website, “Beyond Meds” is really focused on healing the whole person. I strongly urge you to spend hours upon hours on Monica’s site!!
Regarding “family history of mental illness”, let’s talk about that. Can there be a “family history” of existential crisis, extreme emotional pain, suicide? Yes, there can (as you have experienced yourself)…but let’s be clear here. Without question, trauma has a life of it’s own. And fear is contagious. Trauma even crosses generations….but Trauma can be resolved. People heal trauma. There are many wonderful videos on youtube you can listen to about this; my favorite is Peter Levine.
So called “mental illness” is the place I really want to draw your attention. “Mental Illness” is a myth. There are no brain diseases here. There are no “disorders”. This is why the language is so important. The language of “mental illness” creates a multi billion dollar industry. Every time you say “PTSD” or “Schizophrenia” somewhere someone chants “Ka-Ching”. Money, money, money, this is all about money.
DV, What you have been through is so horrific that all I can think of is that I wish I could command a swarm of loving people to surround you, love you, and support you-the wounded healer- as you emerge into the butterfly you were always meant to be. You deserve a community. We all do.
I may be the least tech savvy person I know. I do know that I get an email every time someone comments on this article, but I don’t know how that works!
DV, Are you on facebook? That is where the community is…….in the cloud. What we here at Mad In America are working towards is community on the ground. Thank you for joining us. As far as “like minded” goes, I think we are anything BUT like minded. But that’s what is truly inspiring here. We have many different voices, and we tolerate those differences. Congress ought to take a lesson………Take Care, DV.
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Dear Julie,
It has taken me a while to respond to you here because I am so moved by your bravery,courage and perseverance. (For people reading this, Julie is one of my heros). Thank you for your participation here. I look forward to all you will be writing. Cyberhug.
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Dear DV,
I am so sorry you have been going through this hell. I want to address two points you make. The first, focus. Granted this is just a discussion group, and I don’t know you personally, just about everyone I know who has gotten off seroquel has experienced what you describe. It takes time, but you will heal. Four years out from my last dose of seroquel, my eyes have substantially improved and my focus is better than ever.
Focus, assuming we are even talking about the same thing,…….or cognitive ability, is a complicated issue in withdrawal because there are so many compounding stresses……including being in a medical dust storm of misinformation. How unbelievably stressful is it to be sick, because of the medical profession, and have no one to turn to but strangers who have been through this? Your world has changed, DV,………this is not just the drugs. This is also about TRAUMA.
Regarding “Schizo Voices”, now that you a member of this family (MIA), we don’t use that kind of language because it has no basis in any science, is a massive generalisation, and feeds into the witch hunt atmosphere that we are living in. One third of Ireland hears voices. Seriously. I do hear your distress, and also perhaps the fear of “going crazy”.
What I have learned from my own experience with hearing voices, even though my experiences were drug induced, is that however dislocated, however annoying or uncomfortable….the voices were mine, and they spoke of the needs and concerns about which I was conflicted. Fear of changes inside ourselves are natural, but as I overcame my fear and owned myself as I was emerging again, I began to appreciate the dialogue inside. What I have learned from other people…….is that everyone is different.
Welcome to MIA, DV………I believe your focus will improve just by being here. Follow what interests you and time will fly. Join us in figuring out what all this means.
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Lordy Lord Sharon, Thou dost not mince word! Wonderful discussion.
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Right back at ya. Cyberhug.
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Dear Johnl, No doubt good medical care is optimal. Your suggestions are excellent. The reason I am replying is that there are very few people today who really have access to the resources you rightly recommend. I was in that position in Asheville NC in 2009. No doctor would see. After expressing my wish to withdraw safely, I was cut off. Not even one GP was willing to see me.. I survived only because someone sent me a huge supply of seroquel XR in the mail. Many people have successfully withdrawn carefully from XR out of necessity. And they will continue………until physicians help people who have no money and few resources. In the meantime people will be withdrawing from XR’s because that is the only choice they have, and those of us coaching will support them.
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Thank you Richard, for your response and the book suggestion. It is chilling, indeed, but it does appear that psychiatry is the wastebasket of a medical system that no longer knows how to say “we don’t know everything”.
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Dear Ally, There is no happiness that can parallel the joy of waking up in the morning and seeing something right and beautiful, and good. This article feels like a moment of Grace. I remember when I sent my article “Badgers Included” to Bob Whitaker and kermit Cole, and a heated discussion ensued over my strong words. The article was published, and the discussion afterwards is indicative of that fear of really facing the scope of torture that psychiatry has perpetrated. This article shows clearly to me that our time is here.Those of us housebound and suffering…….and working our activist tails off can make a huge difference. The power of our voices, and the power of the human spirit gaining strength has amazed me since I was a little girl in the Civil Rights movement of the sixties. Our struggle is the Human Rights issue of our time, but we need to redefine this movement to include everyone, because no one is immune (pun intended) to medical tyranny. There are past victims, present…….Future. The trauma “gifted” to our children from having their mothers whisked out from under them, drugged into an unrecognizable strangers, and told that everything is fine………this violence, silent and insidious, is the kind of torture that can shatter and splinter souls. There is no turning away. People regularly ask me how I can keep doing this day after day. I tell them my work brings me joy. I feel that joy right now as tears roll out of one swollen eye. I’m about to turn sixty this year, and it is women like Ally who give me hope for my children’s future. Thank you Ally. Let’s Do this.
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Dear johnl, I certainly do not appreciate your uncivil tone. I suspect, in fact that this is a psueodonym and that you are the person I coached in benzo withdrawal education, Greg Charambalakis. You have spread your venom all over facebook groups, called my house representing yourself as on old friend to get past my assistant (who also endeavored to help you). Your syntax, Greg, as well as your timing is a giveaway. I know you are very sick and suffering, but you need to get a grip before you hurt someone. I do not “advocate” people dry cutting anything. I do not “advocate” people tapering from a drug which was designed not to be withdrawn from (extended release formulations). Many people , however, have absolutely no choice and, for them, I provide as many resources as I can. If you are not the stalker whom I mention above this is my advice for you; stop looking to drug companies for the truth, no matter what they say. do your own independent research and talk to people with lived experience.
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Thank you Richard Lewis for a thorough and excellent article. We at PsychRights stand frmly beside you in our opposition to force.
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Candarae, Please don’t peddle that “drugs treat mental illness” line here. There is no science to support what you have said and it’s dangerous nonsense that this webzine is here to dispel. No, they are not there because something is wrong, they are there because someone THINKS there is something wrong, or because something has happpened. Please educate yourself, because you seem to have the impression that somehow there is an us and them. There is not. There are at least a dozen disorders for each and every person. The problem is obvious; diagnosis is name calling, not science, and drugs are toxic compounds which may or may not be useful for an individual for short term mitigation of a difficult life transition. This is what the science says. No, the medical community does not want to get rid of it, they want to screen to find more. It is an industry. This is not positive or negative, it is fact. From the place where we all have the facts straight, from there we move forward.
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Dear Russerford, Thank you for your comment. I remain in contact with the Lou Pelletier, and trust me when I say they wanted much broader legislation. When you go stomping on the Hill, you soon realize that you have to be realistic. The question changes from “What do I want?” to “What can I get done?”. Lou is involved with many groups, at this point, and one of them is parental rights.org. There is a Constitutional Amendment proposed as well, defining parental rights to make medical, educational, and religious decisions.
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Dear JeffreyC, I’m originally from New York. I still feel that sarcasm is the highest from of humor. Thank you.
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Dear B, “Thought Disorder” has personal significance to me. In Asheville, NC, I went to have an EKG, they asked me if I would like to “speak to a clinician” when the test came back normal, I said, “No, as a matter of fact I would not”. They shot me up with Haldol, shipped me off to Broughton on a thirty second court order that read, “Anti-psychiatric Delusions, Off medication”. During the five days I spent there before they decided to get rid of me, (largely because of the information I was sharing with other prisoners but also because Jim Gottstein called, and also recruited Grace Jackson to help)……this is by far my best story;
I had to go to classes based on my diagnosis (“Thought Disorder”). That “thought Disorder” was, apparently, that my parents were whom they were,………. they said that to Grace Jackson…… who googled them. So I had to go to class to learn about my “illness”. The nurse “teaching” the class was wearing an incredibly expensive gold cross and I complimented her on it. She looked into my eyes and said, “I know that Jesus put doctors on earth to prescribe medication”
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Thank you Ted, that means a lot to me. I’m sure you know that I bogarted the quote?
Y’all, that Frederick Douglas quote is one Ted has uses often.
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Dear John Hoggett, Thank you for your comment. I think the point I really want to make is not that these things never happen, but that the medical profession is not an extension of law enforcement. People have rights. In this country we believe in the presumption of innocence, and rule of law.
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Hi Johnl, Tips for photosensitivity; SLOW DOWN on a taper. 10% can be way too much for many people. For some people “microtapering” is the safest method. Diluting the drug in 120 ml liquid, keeping good data, and slowly removing tiny amounts (and I mean tiny. 10th of a cc tiny)……..this is what I had to do with my last drug, a benzo. Search online and you will find many people providing instructions. There are even youtube video. The medical profession say, “Oh, yes, now we know about withdrawal syndromes and let’s be conservative and taper 10% at a time”. Based on what? Nothing. There is no research. The people who really know what’s going on are chemists who got stuck on these drugs, doctors who withdrew and suffered benzo hell, people who saw what the drugs really do thirty years ago; David Healy in the UK on ssri’s, Dr. Ray Armstrong in the US on benzo withdrawal. These people have to protect themselves against losing their licences for going against the grain. It’s like Cochrane Institute researcher Dr Peter Gotzsche says……this is organized crime. That’s the bad news. The good news is that as more and more people survive and thrive, we are learning. You are right that XR is not what is preferable for withdrawing, but let’s not scare people who have no choice. I know many people who have successfully tapered off XR and then bided their time until the doctor said, “Aren’t you glad I insisted that you stay on drug X? See how much better you are doing?”. I know one guy who stood up and said, “I have been off this drug for six months now, and all I have to say to you is *!##**!!”…..and walked away a free man. How nice. It just doesn’t go down so smoothly for most people today.So, to recap; 10 percent is a LARGE cut, IMHO. I favor liquid tapering, dry cutting is not good because you loose too much, and XR drugs are not designed for withdrawal but some people have no choice and they do well if they are careful. Very careful.xoxo
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Dear Julie, Thanks for the tip on the light colored floor. As far as “permanent” damage goes…..it ain’t over till it’s over. At your memorial service someone may be able to comment on “permanent” damage that you suffered, but until then, I’m holding out Hope. Remember, the world’s greatest “expert” on corneal neuropathy told me my eyes would only get worse. Instead they have gotten progressively better….after several years of getting worse. Will I be able to drive again? Will I ever be free of eye pain? I do not know. I HOPE.
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Hi [email protected], All psychiatric drugs are toxic chemicals and have no research on longterm use or withdrawal. Just Say No.
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I enjoyed this article but felt there was glaring omission in regard to drug induced suicide. I was never suicidal before psych drugs, I was suicidal the entire time I was on until such point as I understood that it was the drugs…..and then I learned how to respond to those feelings by repeating, “This is not me, this is the drugs”. Until drug induced suicides are discussed in the same breath as non-drug induced, people will continue to be misled like I was. Frankly, it was torture. Brainwashing is torture.
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Hi Everybody, In reading this wonderful thread I want to address the misconception that lobotomies are no longer done. They are. And they are now being rebranded as “Psychosurgery”. Insulin shock is not gone either, and when we advise people (I work for PsychRights) on filling out Advanced Directives we include both. People need to understand that because “mental patients” have no rights, anything goes.
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Dear Robin1018, I urge you to read “medication Madness” by Peter Breggin. I could easily have written what you have, before I began to understand that the “cocktail” of drugs CAUSES what it is purported to treat….and worse. In fact, I’ll be thinking about you (even though I don’t know who you are). Electroshock is brain damage and you are being badly, badly misled. It is also very frightening to imagine that your family prefers you damaged. Unfortunately, I am not surprised because my family did the same thing. Looking back, safe and truly loved for the person I am, my family’s failure to value me and protect me is a betrayal of massive proportions.
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Dear Shirley,
Great to see you here commenting. I think you are wise. Very wise. Balancing the risks of withdrawal with the needs of your family is a very tough one. I do want to say that there is every reason to be hopeful for the future. And when the time is right for you, if you decide to taper. there should be more resources…….maybe even some real acknowledgement and research from the medical profession.Never give up HOPE.xoxoNancy
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Dear x,
I know it’s difficult to wrap one’s mind around the idea that the people prescribing the drugs know little to nothing about them, in fact it’s shocking, it’s outrageous………and it is TRUE.
So x, let go of your wishful thinking. That’s my best advice. Since NOBODY has done any research on withdrawal, I feel safe in saying “Don’t look for good advice on the label”.
Schizo-affective, Shmizo-shmaffective………….is another comment I am dying to make. These diagnoses mean absolutely nothing except that you went to a psychiatrist and the psychiatrist categorized you randomly, and then billed for that “expert service”. You are an intelligent person, a highly intelligent person, but you have been had. We all have.
But all that doesn’t really matter right now. What matters is that this drug is harming you. Finding a medical professional who will partner with you is the most important thing, IMO. I found my partner in an Integrative Nurse Practitioner, she already understood the harmful nature of the drugs, and had treated many depressed patients naturally. Christine read Peter Breggin’s book on withdrawal (which has it’s flaws), and many other articles I brought her and together we worked on diet and supplements to address deficiencies, toxicity, and inflammation. Acupuncture and massage were/are also important elements of easing withdrawal for me.
x, In answer to your last question, no. The only thing that ends withdrawal is healing. Anything else is kicking the can down the road. Your psychiatrist will be more than happy to prescribe another drug to mask it. Don’t do it.
The fact that you are going into withdrawal after one missed dose, and that you are having memory issues tells me two things. One; you are not “tolerating” the drug at all (with XR the blood level is more even), and two; you are not a good candidate for taking the drug because you can’t remember to take it. Both conclusions lead me to believe that tapering off may be your best option. I would add that seroquel causes dementia, and your memory issue is not a good sign.
Tapering has several steps. Find a SAFE SUPPLY, do the REASEARCH, create SUPPORT, and throw out the calendar.
I wish you the very best x, my email is [email protected] if I can help you find any resources.
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Hi Liloisabride, I had some itching…….that time tends to be a bit of a haze. It did go away, it wasn’t really troublesome. The eye pain has been my bete noir.I appreciate the discussion and am learning some things about the antihistamine connection. High histamine is a major cause of insomnia I’m told. I spent months on the low histamine paleo diet that Monica Cassani was also on. She and I talked recipes for a short time. My love of food and cooking has been a good friend to me. Best Wishes.
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Dear Julimadblogger,
I am really looking forward to your future articles.
As Ted Chabasinsky writes,
“Love and Solidarity”,
Nancy
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Dear Josh,
Thanks for writing, thanks for finding this site. I think we Americans have much in common with New Zealanders ,being the only countries that broadcast pharmaceutical propaganda over public media.
Yes, what happened to me is outrageous……criminal really, but far from uncommon. I wrote this article three years ago. Several months afterwards I went into benzodiazepine tolerance and the article title I’ve been contemplating is “From Seroquel to Benzo Hell”.
For the last eighteen months I have been going through a liquid microtaper from 1.5 mgs klonopin. I’m down to .12 mgs but the last part tends to be the most difficult and I don’t yet see the end in sight. I have learned so much about drug withdrawal in the last few years, and met so many, many people who are stepping up to learn and help. I very much feel as if I am living in the trenches on a battlefield.
Unfortunately, I am housebound for the most part. Although my eyes have improved a lot, I still can’t drive, and the benzo withdrawal affects me most in muscle pain. Imagine your worst athletic cramps…….and then imagine it not going away, and being unable to exercise. The muscle pain of benzodiazepine withdrawal, added to unremitting insomnia and anxiety, are the reasons some people commit suicide.
What has saved my life is being Loved, and Loving other people through the work of witnessing. Witnessing means two things to me. In Southern Baptist Speak it means speaking the truth of Spirit. Telling the story. In Underground Drug Withdrawal Railroad Speak (I’m making this up as I go along) it means “BEING a witness”. Hearing someone, Listening, and BEING with them.
Pain is not something that can be avoided in life. In fact, the avoidance of suffering causes.. even more suffering. And comparing the magnitude of any one person’s suffering to another’s is almost a way of pushing that person away. A pedestal is as isolating as a prison. Pain and Suffering are also two very different entities, I’ve learned. I am in a lot of pain. Physical and emotional. I have lost so much, and finally safe, I can feel the depth of those losses.
But I am not suffering. I am not suffering because I am no longer reacting in fear all the time, and because I feel more deeply connected to other people and to the community of humankind. And, probably most importantly, I am not suffering because I have a voice. Here I am talking to a young man on the other side of the world who has his entire life ahead of him, about this difficult, difficult subject.
Please take good care of yourself, we need empathetic people in our movement to save lives. You can help in any number of ways, activism looks different on everyone. Educating health professionals is the most important one, IMO. It is not easy. But it has to happen.
I can understand the narcissistic injury it presents………sorry for the clinical lingo…….people don’t want to go through 12 years of a brutal educational environment for the sake of the freedom to practice medicine…….and then have a bunch of angry customers tell them how to do their jobs.
” I mean WHO ARE these people anyway??I’M the one who suffered through Internship and Residency with attendings treating ME like a slave who doesn’t need sleep…..I DESERVE the position of power that society has conferred upon ME.”
Doctors are trauma survivors too. If we want to educate them we need to understand that. I’ll go even further and say that it is rare to find anyone who does not carry unresolved trauma today.
Josh, from what you say I am concluding that you need to taper slowly. No one regrets tapering slowwwwwwwwwwwwwly. Tons of people ( as in piles of bodies)
regret NOT doing it. I hope you understand that staying on Quetiapine is a mistake, unless you just can’t get off it. I now know a lot of people whose body chemistry has changed so much they just have been unable. There is no shame in any of this, there is no right thing……there is only the best thing. The best thing for you.
Nancy
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Sandy, I really appreciate your openness and your honesty. You are right, being wrong doesn’t equal being Evil. I think about where I was five years ago as well. Without question, some of my positions have softened as I meet people and listen to their stories. Being wrong doesn’t necessarily mean evil, but those who know they are wrong, and continue to abuse power…..well, that fairly meets my criteria for evil. You mentioned earlier that “society has given psychiatry vast power”. I suppose that is true in a macrocosmic way, but really that power has been cultivated mostly behind closed doors. Through carefully crafted legislation introduced and supported by private lobbies. The corporate medical coup goes back to the late forties. It was not enough for the Rockefellers to buy medical schools for the purpose of selling chemicals and radiation etc………every other alternative had to be made illegal. And it was. And still is.
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Daniel et al,
WOW is right. This is intense. For me the most intense moment was when the psychiatrist walked into the room…..and the ripples of power set in. Must not upset a psychiatrist…..we all know what happens when the psychiatrist is not happy.
Bob Whitaker popped in with a full salute. OMG, what if Sandra Steingard decided she didn’t want to give this site her magic seal of approval? What if she takes her ball and goes home??? What will we do then??? We can’t have that!!
So let’s not talk about what makes us uncomfortable, after all isn’t that what all this is about? Everyone wants to be comfortable….SO, let’s repackage the truth. Use language in such a way so as not to ruffle feathers.
It was Okay for the doctor (Sandy Steingard, in this case) to suggest to Daniel Mackler that he might not be using his voice appropriately. After all, that is her job right? She gets to be the ultimate expert on what is appropriate, right? The elite condescend, patronize, and infantilize………and no one even says a word. Even in this group.
I’m going to defer to the imagination on how I personally would suggest to Dr. Steingard how she might use her voice in a more appropriate way. People are dying.
Last Saturday week, four thousand people turned out to protest psychiatry in Boston. The case of Justina Pelletier has hit a nerve. The fifty thousand people who have been facebook Justina advocates, from all over , are looking at other Justina’s to help. They are asking naive questions like, “Why is it everywhere I look, Psychiatry is the handmaiden of injustice? CPS, Family Court, Divorce proceedings, schools, hospitals….How could this happen in our country??”
And this really was inevitable. You keep creating victims long enough, and you wind up facing the mob.
So while we sit here and engage in a “civilized discussion” about the genocide that is taking place in front of our eyes, people who are willing to do something about it are the ones making the changes. Texas Congressman Steve Stockman from West Texas has a Bill on the House floor that aims to give parents the power to say no. Lou Pelletier and his legal team have been spending a good deal of time on the Hill, and Lou mentions several people in Congress who have themselves experienced psychiatric coercion during hospitalizations of their children for medical problems.
There is a powerful spark of populism gaining friction in America and the web of fraud, corruption, and murder that the psychiatric profession has perpetrated is hiding in plain sight.
I agree with Chaya Grossberg about what it means to be an artist. I was a recording artist before psychiatrists in Concord, New Hampshire ripped my heart out. Maybe someday I can get back to songwriting, but I have a duty to do for my country, my children, and myself. I have to use my voice and express the people who tell me their stories of torture and of resilience.
Freedom of speech is the fundamental cornerstone of all of our civil liberties . It is a precious, precious right of every human being to express themselves. Any chipping away of it, or rationalization for not protecting it is a gift to darker forces.
I mean no disrespect for Sandra Steingard. I feel sympathy towards her and cannot imagine the pressure of being in her position. I also cannot blame her for my own heightened sense of power dynamics, or at least not her directly.
It heartens me to see that Bob Whitaker is asking important questions about what MIA is doing and what it hopes to accomplish, but in the meantime, I feel such enormous gratitude for the voice that has been given me here, and so many of the other voices here who have become important sources of inspiration, Daniel Macker would be one shining example.
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Humanbeing, You can help!!!!! No, you are not too damaged. There are great ways to communicate and get past the myths, and you can save lives!!!!!! There is no greater gift, in my opinion, than knowing that you have informed people…….and knowing that they will not fall prey to this Evil. My job as Educational Director for The Law Project for Psychiatric Rights involves leadership development. You can reach me at [email protected]. I am also withdrawing from Klonopin (my last drug). I’m almost finished!!! xoxoNancy
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Dear Liloisabride,
Congratulations on finding the Love you deserve.
Since you are already angry with the “pdoc”, be prepared to get angrier. Bipolar is made-up. There is no disease, no medical evidence of any such “disorder” at all. None. This is not to say that people don’t identify their experiences with this label, but that’s all it is. A label.
The weakness in the wrists that you mentioned is something that I have experienced as well. Pretty much anything under the sun can be part of withdrawal because the drug is a toxin, and every cell in the body is affected.
Insomnia is without a doubt the biggest challenge, but it sounds like you have someone who will stand by you, and that is the most important thing. One of the things I have learned about getting sleep is that exercising after five in the evening can overstimulate me. Even being out for a social evening can interfere with my fragile sleep. Overstimulation is very real. Learning your body’s cues will help. There are many good websites on “sleep hygiene”, but taking overstimulation into account is critical. Some people find that reducing electromagnetic fields makes a big difference (turn off all electronics). White noise helps many people.
Watch carefully for what I call “the kick”. For some reason, and in the absence of any research we really have no idea why, what we are seeing is than many people encounter a reemergence of severe withdrawal between four to seven months after discontinuation (your very last dose). If you are not surprised…. IF this happens……you can ride it out without getting diagnosed with fibromyalgia, MS, or whatever your gp can think of. Time is your friend. You will heal.
If I can help you connect with resources, you can contact me at [email protected].
Welcome to the world of Survivors. Best folks in the world.xoxo Nancy
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Hi Oli, Good question, my direct sources are Lou and Jennifer Pelletier. I use quotes from Justina herself, but I have not been able to speak to her directly. No writer has.
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Excuse me, now it’s 36.000 people reading the Justina facebook page.
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Inspiring article, Michael. The elephant in the room here is CCHR. The smear campaign against CCHR has been so effective that we are willing to discriminate against people, people who not only share our valid concerns but who are willing to put their money where their mouths are. And the bottom line is that Psychiatry is all about discrimination. Building broad coalitions is the way movements succeed. I’m working on the Justina Pelletier case right now. There are 30 thousand people reading the families’ “Miracle For Justina” facebook page.The Lyme’s Disease community is activated. As I was contacting people to provide resources for the Pelletiers, one person I contacted did not want anything to do with it because Liberty Counsel has gotten involved. This, IMO, is a moment for us all to examine our own personal bigotries and GET OVER THEM. Either we are against the thought police or we are not. If we are against the thought police than we have to defend perspectives that don’t jive with our own. Broaden our coalitions, make it local, WE CAN DO THIS. The Justina case is the perfect way to introduce the issues because every single person who reads about this case understands that what is happening to Justina could happen to anyone. People are getting it.
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Thank you Leah, for this excellent article. Sadly, for me as well as others I know, Family is indeed the enemy. To suppose that every family wants the best for their family members is unfortunately very naive. For many dysfunctional families, Psychiatry has served well to silence and imprison those who dared to long for a better life.
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Not to worry MissusSharon, there’s a thread there. People can see my responses in blue. I really appreciate that you responded instead of going away. You are among friends.Best, Nancy
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Thank You MissusSharon!!!! It was the line “contact the maker of seroquel and see if they will help you if you don’t want to come off”. That was a red flag for me. Drug companies don’t “help” people by giving them seroquel. This drug kills. This drug is addictive. There is nothing “helpful” that the makers of seroquel are involved with doing.The makers of seroquel lied through their teeth about this drug in order to make a profit. When you suggested contacting them, and suggested that some people might “want” to stay on, my fear was that someone coming to this site might read that comment and think that seroquel was not really so toxic. It is. Thank you so much for your response.
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Dear Comingoff, Yes I strongly stand behind James Harper’s “How to get off Psychoactive Drugs Safely” (they will send you a free copy) and I take some of the supplements that the author developed. The supplements are now sold by a new company because the old one changed the formulas. (http://neurogeneticsolutions.com/)
Omega 3’s are fine for everyone. Actually, they are really essential for healing. The brain consumes Omega 3’s at 45% higher rate than the rest of the body. What is variable for people is Probiotics. You are welcome to email me at [email protected] for resources and support.
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Dear AgniYoga, Please forgive me, I thought you were commenting on my article when in fact you were responding to someone whom I truly believe is a troll.
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MisusSharaon, I have to question your authenticity. Drug marketing has no place here.
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Here is the white house petition for Justina Pelletier;https://petitions.whitehouse.gov/petition/order-justice-department-investigate-civil-rights-violations-justina-pelletier-case/7s77z28f#thank-you=p
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Thank you, Monica Cassani and Mad In America, for posting this article in such a timely manner. Yesterday a man named Lou Pelletier and his wife Linda experienced the complete nightmare to which this article alludes. On Valentines Day of last year (2013) the Pelletiers brought their 15 year old daughter to Boston Children’s Hospital in an emergency. Justina had been in treatment for Mitochondrial Disease and came down with the flu in Boston, on vacation. The Connecticut couple did exactly as was recommended by Justina’s doctor at Tufts. They went to Children’s Hospital. There a psychiatric resident, newly minted, hijacked the case without even bothering either to read her extensive medical records or consult with her physician. A court order remanded her into the custody of the state of Mass. on the basis of a diagnosis of Somataform Disorder, and the parents were the recipients of a gag order. Lou’s seriously ill daughter was kidnapped by a Hospital who claimed it was all in her mind. He did what any loving father ought to do. He went on national media. Yesterday the court ruled that Justina (with red lines on her abdomen and muscle atrophy; in a wheel chair) will be dumped into the fostercare system .No family will be allowed contact because they must all be in on this psychological conspiracy to make a healthy child sick. Medical treatment will not be allowed because “she’s making it up” .Remove Psychiatry from this equation and it becomes very simple; if criminal activity, like harming a child, is involved then criminal charges are filed, the trial is public and The Rule of Law must be observed. Any infringement can be appealed. Enter Psychiatry and the landscape morphs into the Gulag Archipelago where anyone can be disappeared, no due process is involved, and no one is permitted even to discuss it on pain of repercussion. This is not the future we are talking about, this is NOW. When a lifelong Democrat and Progressive like myself begins chanting, “God Bless Glenn Beck”, the world has truly turned on its’ head. I have been writing about this case and have had some very small contact with Lou Pelletier, who is prepared to go to jail should that be necessary to save his daughter’s life. A facebook page is connecting people from all over (https://www.facebook.com/groups/freejustina/permalink/234967319960959/) and two petitions are being circulated; one to the Wite House, and one to The New York Times (https://www.change.org/petitions/new-york-times-cover-the-justina-pelletier-case-in-boston). It’s invigorating to see how people are springing into grassroots action, but on the other hand it’s also clear that most of the people stepping up to the plate really have no idea of the extent to which Psychiatry is truly above the law. Over and over people are saying, “How can something like this happen?”. Monica is right in saying that Education is the antidote, but right now that antidote looks to many like poison.
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…..Outside the CHURCH (sorry for the freudian slip) was where the Asheville police snatched me. You were certainly correct about depression being the portal through which the torture was imposed on me, and many other survivors I know, but another large group is people who experience disorientation or psychosis due to many causes. I appreciated your last line asking why people experience depression, I thought it was very insightful as well as poetic, but it felt to me as if it was focused on the individual, when my experience has shown that trauma of one kind or another is always involved, and one of the things that needs to change about any mental health system is the assumption that people who present are either to blame or can even necessarily be responsible for the situation. Thank you AgniYoga for your comment.
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Dear AgniYoga,
Assuming makes an ass out of you and me, as the saying goes. I started withdrawing from drugs in 2008. My loving sister came swooped down from Mass. to N.C. and had me arrested and force drugged. All she had to do was call 911 and say I was suicidal, and they came and destroyed my life in North Carolina. That’s when I became an activist. I spoke up and the response was that my prescritions were cancelled, no psychiatrist would see me, no family doctor in Asheville would see me because no psychiatrist would see me, and I knew if I went to the hospital that I’d be shot up and sent off to the state hospital, Broughton (famous for their brownies). That did eventually happen, but not before the CEO of the largest child drugging outfit in Asheville (The Pisgah Institute) called the police and reposted me as a “suicidal prostitute trespassing at a church”. It was a church where I had sung in the choir, and I was scheduled to perform. Father’s Day 2010. The police grabbed me outside the truth, took me to the station and treated me to a sexual assault and kept me without glasses or medication for 24 hrs. I came to Alaska and began working at PsychRights in October of 2010 after Jim Gottstein and Kim Crespi helped get me free. Today I am still withdrawing. Over a year of microtapering from Klonopin.
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Dear Dear S, I can only tell you what I would do. I would back the hell up!!! The cardinal rule for me is “no sleep, no withdrawal”. There are many people who have traveled this road and can coach you, even advocate for you. You can email me at [email protected]. If you were hospitalized, they would put you right back on the drug……being hospitalized is to be avoided . I’ll be honest, psychdrug withdrawal in general can set off nerve pain in people who have never had it (as can taking these drugs to begin with). You will have to taper very, very slowly…….and you will need help and support. You have a number of difficult and complicated issues to weigh through, and you must restore your sleep in order even to entertain all these thought. Anyone would. We simply can’t function or heal without sleep. The insurance question is another matter. Educating your doctors could help you resolve that situation, but either way you are going to need a safe supply in order to taper. I have to be honest here, if it were me in your situation, I might be considering lowering the dose as much as possible (Very Sloowwwly) but not taking the chance of completely stopping it. I don’t know your age, but you have to consider both the routes of staying on a lower dose and taking the chance of what would happen if you discontinued completely. There is no research. Lastly, if I were you I would do ANYTHING (even be hospitalized) to avoid being cut off. Cold Turkey off 100mgs was a disaster for me, and I had no complicating health conditions. Your situation is difficult but please remember that many have faced these challenging situations and prevailed. I hope you will consider changing your nom de plume. There were good reasons for your suicidality, and once you figure those out (for me, it was the drugs that caused suicidal thought and actions)you can move forward. Holding suicidality up as your identity is not a good idea. You are not suicidality. You are a living, breathing, multidemensional being who wants to live and heal.
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Thank you Jim Gottstein, I stand corrected.
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Dear MisusSharon,
I saw a number of eye doctors who said the same thing. The damaged corneal nerves were seen on a confocal miscroscope. My doctor was Dr Rosenthal in Boston, but he has retired from seeing patients. Here’s the thing; I was told this eye condition is permanent and gets progressively worse. I wrote this article in 2010. Four years later my eyes are improving, still painful but improving.I would suggest to your doctor that he is weaning you far too fast. Show him my article, many people have done that……slow and steady wins the race. Best Wishes, Nancy
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What this article accomplishes is to distract the reader from the reality that Electroshock is brain damage. If that alone is not disturbing enough, the suggestion there is that forgetting is an appropriate way of dealing with life events, as if that were even possible. My question is this; are they recommending that everyone else who was involved in these undesirable memories must also be zapped? This is pure science fiction and it scares the hell out of me.
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Dear Donna,
Dear Donna,
Clearly you reacted the same way that I did, but I’d prefer to reserve judgement. We really don’t know the situation. What I greatly appreciate is the amazing list of resources you have provided, I’m looking forward to following up on the articles and authors you cite. Thank you more than I can say.
And I’m glad I made your day!!! Not everyone appreciates my style of communication as much as you do. Thanks for your kind words.
Sincerely, Nancy
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Response #2 to “Crazy”,
I apologize for the harshness of my first reply. We trust doctors and it’s hard to believe that they would provide false information, but unfortunately that is now the world we live in.
I can imagine this might leave you in a place of not knowing where to turn. There are people who can help you navigate through this mess, and nutrition is also critical to mental health.
The website I would recommend to you is Beyond Meds.
Equally as important, the real question for your wife is not “What is wrong with her?”, it is, “What happened to her?”. Finding a therapist who can be a compassionate witness may be extremely helpful provided they are well educated in the myths of so-called mental illness.
There really are options and alternatives and I wish you both the very best on this daunting journey. If I can be of service, please let me know.
Sincerely, Nancy
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Dear Sir,
While I appreciate your thanks, the best I can do here is to tell you the truth. First of all, I find your nom de plume highly offensive. Secondly, I frankly don’t believe that your wife is “Bipolar” for several reasons, the most important one being that you like your wife drugged.The second reason is that I have spent years reading research, and there is absolutely no proof that “Bipolar Disorder” exists. I am not denying anyone’s experience, but in terms of medical evidence, there is none.Any female on the planet can walk into a psychiatrists’ office and be designated “Bipolar”. Lastly, it is clear to me that you are not doing your homework because there literally is no such thing as a chemical imbalance until one takes psychoactive drugs (which can even include some antibiotics). Let me repeat that; There Is No Such Thing as a Chemical Imbalance.It is a marketing fiction. I’m sure you mean well, or at least I hope you do, but from your post I have to be honest and tell you that your post is quite disturbing. If your wife, whom you should never call “crazy”, wants to communicate with me about diet, or anything else in my article, she is welcome to contact me at [email protected].
I really don’t mean to be rude, and I hope you can hear what I’m saying.
Psychiatric drugs are not “medication”, Sir, they are chemical agents which disable the brain and are highly toxic. Used in crisis as respite for a short duration, some people find them helpful, but they “treat” nothing, and taken long term lead to chronicity and relapse.
If this is shocking news to you, I urge you to stay here and read more articles. This is where people come when it’s time to wake up.
Wishing you the best, please let your wife know she is welcome to contact me. And thank you for your comment.
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Dear Rittenhouserobz, Yes there are MD’s who look at the bigger picture. Please contact me and I will help you find someone. Contact me @ [email protected]. There is no way of knowing now how a particular person will react to coming off seroquel. This we know; slow and steady wins the race.Supplements supporting withdrawal have been and continue to be critical to my wellness and I’m happy to share resources with you, as well as my own personal experience. Please do not hesitate to get in touch over the holidays. Your assessment of the medical profession resonates with mine. “They” are blessed to have you in “their” corner.
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Dear Sweep, Sounds very, very familiar. If I can support you, or you just want to rant, I am at your service. I really appreciate your sharing because you’ve mentioned some important things. You have shown us that two years (as opposed to my example of over ten years)of taking seroquel and tapering slowly still left you in a similar state of crushing insomnia and general disability. This is why I wrote this article; so that we could gather this kind of anecdotal information. Sweep, please consider this; you took this drug during a difficult time. What that means is that just when you needed to move through and process, your brain was assaulted. Not only are you recovering from this assault, you also are likely to be carrying old wounds that need healing (the difficult time that brought you to ask for help). The anger that you feel is likely bound up with this. I know mine was. So what I’m saying is, honor your anger, allow it to be a healing and purifying heat that carries you into a place of freedom to move forward.Other people who tell you you need to let it go are….other people.Sometimes other people are right. Letting go of something you aren’t finished with is not letting go. My healing has been slow but constant. Three years after writing this article, I’m sleeping six hours or more. Supplements really help me. I take L-theanine, melatonin, Seriphos (a cortisol managing natural formula) and passion flower. Of course, I’m still microtapering off my last drug, Klonopin, and benzos have strong insomnia effects, but even so, I’m sleeping. I know you will be too. Take Care of You.
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I hear you, Trev. I read things I wrote a few years ago and as hard as it is to believe that I was so bought in to this fraud, it is the very thing that gives me hope for others.Life can change on the turn of a dime. Fantastic that you have discovered Dr. Breggin. His books are invaluable, with the exception of his latest on drug withdrawal. Those of us working with others tapering off know better.Breggin recommends 10% cuts which are fine for some and send others into a world of hurt.His book is also based on zero research, so frankly, I don’t understand what he is thinking.I think I see an activist in you, Brother, so, “Welcome to the Matrix, we’ve been expecting you” (my signature line).Take Care, and keep us posted. Also Trev, there are facebook support groups which are truly excellent. If that interests you, please contact me at [email protected].
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Awwwwwww, Thanks Warmac. Silver Lining. Take Care.
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Dear Trevonline, DO NOT cold turkey off the seroquel. Not in any way shape or form worth the risk. The fact that you are exhausted suggest MANY things you and your doctor need to look into. Adrenal fatigue is the first thing that comes to mind.Chronic fatigue syndrome (an autoimmune issue) is one of the many things people who have come off psych drugs experience, so I’m not sure I’m on board with your assessment that you are OK. Certainly not OK enough to COLD TURKEY off the least studied class of drugs; neuroleptics. Mine is literally the only article on seroquel withdrawal on the internet. But in truth, NO ONE is safe. It’s Russian Roulette; we have NO IDEA who will walk away and shake off the dust and who will be disabled and in chronic pain. DO NOT COLD TURKEY. Think of all the people whose lives would be affected if you couldd no longer be active in their lives. Think of your daughter. Nancy
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I hear you Francesca, but I have to disagree with your example of chemotherapy. Anaesthesia is poison too, but who would want to go through surgery without it? You have a point, but in this case Ernest Hemmingway best described the effects of ECT when he said, “The operation was successful but the patient was lost”. The other thing is that I’m more than unconvinced that people who say they”benefitted” have had the opportunity to assess. If I had been interviewed a couple years after ECT I could easily have been(and maybe was, I don’t remember) someone who said I “benefitted”. But if you had asked my children they would have told a different and very tragic story. Yes, imagining that there’s this harmless procedure that will take away your pain may hold out some appeal to people who don’t understand what’s at stake, but it’s a lie. Like the chemical imbalance lie. I happen to agree with you that suicide should be legal. Having a government force you to be alive is something at which our American founders would have recoiled. The issues of conscience here on Mad in America are many, but I can’t go with you on your statement that banning ect is a “non-starter”. Banning ECT would not be very different from banning slavery. I went to high school half a mile from Stonewall Jackson’s headquarters and I have heard racism in its’ purest form. Travel back in time (or just visit Mississippi) and you can hear people saying that ending slavery is a “non-starter”.
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Francesca Allan, I appreciate your support for informed consent and personal choice, but the oath of a physician is not to harm. To confuse recovery with brain damage is the old lobotomy justification. Recovery according to whom and by what definition?
Before the movie “Cuckoos nest” I heard many people justify lobotomies. Brain Damage. “Oh she’s much happier” people would say, and what it really meant was that suffering was out of sight and people were relieved. Imagine how you would feel if you could not remember the births of your children, the day you got married, the people you loved whose faces are vaguely familiar. Wouldn’t it be worth the arduous task of facing fear, oppression, and trauma and come out on the other side of hell with an expanded consciousness? Is it fair to a mother’s children that a physician changes the very identity of their mother? Do they get to be informed and sign consent? No, this torture must be stopped and physicians must be required by law to tell the truth that HOPE is real, anguish is not disease, and brain damage is not a “treatment”.
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Great article, Phil and it’s nice to see your face (I’ve been posting Phil’s blog on FB). I’m hoping we get as many ect survivors to add their stories here as we can. My story repeats what has already been made a clear pattern. Depression hit me like a two by four. Like the good doobie I was, I went to the shrink. I had a “chemical imbalance” which safe and effective drugs for life was the answer. Hypomanic reaction to prozac, every drug on the market at the time for my “Unmasked Bipolar Disorder”, became a suicidal maniac and ECT was “medically necessary”. Lost years of memory.My children taken from me. My career shattered. What I find insulting to my intelligence is that these so-called studies rely on self reporting,and I keep asking,how about a study that interviews people who knew someone who had ect before they were assaulted? The person who really sticks in my mind was someone I met a few years ago. She drove around in a van filled with stuffed animals, lived in a trailer (nothing wrong with either) and did her level best to get me hospitalized “for my own good” because of my activism. I later learned that she had a PhD in Literature/Philosophy from Columbia University. That person was gone. The fact is, as you quoted from the textbooks, ECT is brain damage. ECT does not “reduce frontal cortical connectivity in depressive disorders” because depressive disorders are not people. Human beings who are electroshocked, one and all, are victims of closed head trauma. Each of us has our own unique brain injury brought to us directly from those sworn to do no harm. To the person who wrote that ECT is no longer being advertised; look again. ECT is being rebranded. Duke University has mounted a disinformation campaign pushing it (among many others) and think about it for a moment. Put on you Evil Thinking Cap. This past year there has been movement in exposing psychiatric drugs. What better time to push a “non-drug therapy”?? Phil, thanks again for your continuing presence in these dark, dark times.
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Dear Maria, I’m so pleased to have the opportunity to thank you and to share my story.So, first, Thank You. I kind of feel like I’m eight years old writing to the President. In 2009, you inspired me to become an activist. I got my first personal computer, and I listened to every interview or video I could find, and I read anything that google could find with your name in it.Thank you so much. You showed me how a Lady does this.Maria, I know in my heart that your son is proud of his mother, just as I know that my little girl lives on. My little Sarah died at four and a half months in 1982. In 1989, I went to a psychiatrist in Concord, New Hampshire, after my fourth daughter was born. I had post partum depression and my husband was trying to hide that he didn’t want to be married. The psychiatrist listened to me for a long time (he was quite the charmer)and then pronounced with great certainty that “In his clinical experience” (imagine someone smoking a pipe and peering at the heavens)the depth of my pain could only mean one thing. I must have been molested as a child. Our work would be to uncover the memory and confront the abuser. What followed was a nightmare worth writing about someday….it was a nuclear disaster. The drugs I was given, and the number of nearly completed suicide attempts I made (all explained as “mental illness”)….mine is a familiar and well documented psych survivor story. What I wanted to focus on was the complete lack of understanding that man had of what it’s like to lose a child, that losing a child is forever, and that after losing a child life itself is never the same. Reframing becomes necessary, and more than once. Our entire identities are changed. This incredibly ignorant and fascist psychiatric elite that charges itself with inventing disease while somehow seeing itself as a gift to humanity had better be prepared to arrest all Jews sitting Shiva. Now here’s an idea for any drug rep who may read this; forget about teen screen, that’s small potatoes. Put surveillance in graveyards and find the people who show up on camera. If grass has grown on the grave, you know the person is mentally ill. Could be big money. That was my way of thanking you for your sarcasm in your article, Maria. It was great. What disturbs me most, the grief debacle, is that it really is targeted at women, and guess what? All of psychiatry is. Yeah, they’ve tried to balance things out with ADHD but this is only perhaps because passivity is now politically correct.Political is what this all is.The politics of greed and power.And the really tragic thing about the very idea of denying grief is that it’s the best possible recipe for making creativity absolutely disappear.So thnk you Mria and God Speed. This is a song I wrote for Sarah,http://nancyrubenstein.com/HomeByTheLight/04-Take%20Me%20toTexhoma.mp3
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Dear Ripley, If you would like to communicate with me privately, you are welcome to email me at [email protected] with the understanding that I am not a doctor, and that my sharing of resources and experiences should not be construed as medical advice. For readers seeing my response to Ripley, my remarks are addressed to you all. I don’t believe in Bipolar Disorder.There has been oodles and oodles of money spent on researching “Bipolar Disorder” and the study they trot out to convince you that it’s a brain disease has no undrugged control group. Read that sentence again. The “Bipolar Subjects” had all been fed neuroleptics, ssri’s, mood stabilizers (really “anti-seizure” drugs) and other assorted tranquilizers (including benzos) for years. Their brain scans all showed shrunken frontal lobe and basal ganglia (Grace Jackson MD has documented and written about this). Ripley, at this point I pause to say to YOU; “Friends don’t let Friends Cold Turkey”. Please Ripley, whatever else you may read on this site, Cold Turkey can land you disabled. Disabled, period. People come off these drugs safely without any further harm, but they do it well-informed from many sources, and they do it slowly, and with support. I have something very unpleasant to say now; If I went off 200 milligrams of seroquel cold turkey I wouldn’t be keeping cruise reservations, I would be making medical arrangements.The horror story that I wrote, which I assume you read (because you left a comment)happened after cold turkey from half of what you did. You may be a miraculous toxin metabolizer and you may be fine, or you may be in the roughly forty percent of people who have a problem. There is no research, only anecdotes. Mine is one of very, very few out there. I read about an eight month kick with seroquel; where all of a sudden the shit hits the fan. Because I read that (and that web page has been down for two years now, but the guy had a handle on biochemistry and pharmacology)I was emotionally prepared, in a way, for what happened to me (my eyes).I am not speaking to you as an expert. But what happens if you get really, really, really sick on a cruise? You’ll have to make that decision. There is no research, not even a facebook forum where people who have gotten off of seroquel support others. Why I can only conjecture; when I decided to come off in 2009, the very nice psychiatrist “treating me” said, “People like you don’t come off drugs”. People really had been told, “You need to take this for life”. It’s still happening and I fear that this is what is happening to you. You have a lot going on in your life, you don’t eat well enough or sleep well enough and depression hits you like a two by four. You’re at your very wits end, or beyond, and then someone tells you, “Oh, you poor thing, you’ve got this brain disease that’s making you feel the way you do. There’s no shame in it, it’s a physical disease. Like Diabetes, you need to take medication for the rest of your life”. I believed this for over ten years. The shock of learning it isn’t true has completely changed my life….for the better. There’s no brain disease. But life is hard. And being human is messy.Ripley, I’ll be thinking of you, and wishing you well. The journey you are on that brought you to Mad In America is quite an adventure, and the people here are the best. I spent a couple days deciding whether or not to say these things that I think you need to hear. I thought of some very good reasons not to say anything. And then I changed my mind. Someone should have told me sooner. Many people should have told me sooner.Take Care.
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Hi Claire, I reread the losing weight comment and I wanted to share that in the last few years I have seen quite a number of people lose the weight they gained on drugs on the Paleo Diet. Pretty much Paleo is about stopping grains and sweeteners (honey is legit).I was on it for two years very strictly while I healed from “leaky gut” (very common these days). My partial understanding of weight gain is insulin resistance, and it’s my belief that this process is also induced by our fake food supply. Here’s what wikipedia has to say;One of insulin’s functions is to regulate delivery of glucose into cells to provide them with energy.[1] Insulin resistant cells cannot take in glucose, amino acids and fatty acids. Thus, glucose, fatty acids and amino acids ‘leak’ out of the cells. A decrease in insulin/glucagon ratio inhibits glycolysis which in turn decreases energy production. The resulting increase in blood glucose may raise levels outside the normal range and cause adverse health effects, depending on dietary conditions.[2] Certain cell types such as fat and muscle cells require insulin to absorb glucose. When these cells fail to respond adequately to circulating insulin, blood glucose levels rise. The liver helps regulate glucose levels by reducing its secretion of glucose in the presence of insulin. This normal reduction in the liver’s glucose production may not occur in people with insulin resistance.[3]
Insulin resistance in muscle and fat cells reduces glucose uptake (and also local storage of glucose as glycogen and triglycerides, respectively), whereas insulin resistance in liver cells results in reduced glycogen synthesis and storage and a failure to suppress glucose production and release into the blood. Insulin resistance normally refers to reduced glucose-lowering effects of insulin. However, other functions of insulin can also be affected. For example, insulin resistance in fat cells reduces the normal effects of insulin on lipids and results in reduced uptake of circulating lipids and increased hydrolysis of stored triglycerides. Increased mobilization of stored lipids in these cells elevates free fatty acids in the blood plasma. Elevated blood fatty-acid concentrations (associated with insulin resistance and diabetes mellitus Type 2), reduced muscle glucose uptake, and increased liver glucose production all contribute to elevated blood glucose levels. High plasma levels of insulin and glucose due to insulin resistance are a major component of the metabolic syndrome. If insulin resistance exists, more insulin needs to be secreted by the pancreas. If this compensatory increase does not occur, blood glucose concentrations increase and type 2 diabetes occurs.[4]. I hope this was helpful. Best, Nancy
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No problem Rossa, I’m sure it was how I wrote it. There is no “Cutting pills”, only dissolving them as best as possible (solution and suspension). I believe I used the word “cut” also to mean “Lowering the dose”. So for example, at my most sensitive I was making my solution (Correction, my assistant Laura was doing the work because I can’t see well enough) and then “lowering the dose” by .00125ml (taking that much out and throwing it away), then splitting that liquid into three even doses, which I take at eight hour intervals (for me it’s 6am,2pm,10pm). Please don’t hesitate to ask until we get this clear. It occurs to me we all understand words in the context of culture and experience. I loved high school chemistry. Mr. Morrison used to ask me to play guitar for the class. People make all the difference. Love, Nancy
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Hi Rossa, It’s always so nice to see you. People are told to split pills in a pill cutter (or using a razor). When we do that there is dust, and there are bits too small for the eye to see that are lost. Many people have no choice but to do that.It does mean that some of the drug is lost, so really accurate measurements are not possible to make. By diluting tablets in liquid (a solution is better than a suspension; a solution is when the molecules of the drug bind with molecules of the liquid. A suspension means the drug molecules are still distinct from the liquid. Many people have succeeded in tapering from suspensions, but they have to be careful to keep shaking the liquid to get the suspension as even as possible). When I began my taper from Klonopin (which is fat soluble; I use goats’ milk) I was so sensitive that my cuts were .oo125 cc’s. We really wondered if it was even possible that I could get off at all. But as time went on, I got stronger. Started sleeping better. Now my cuts are at 1 cc. That’s pretty huge for me. And they will get bigger. But as we get to the last 25mgs we will slow way down, and then slow down even more as we approach zero. When I’m home free, my assistant and I plan to write about it, but it ain’t over till it’s over. The people I learned to do this from have done a RTC of 180 people who were successful tapering off benzodiazapines. They are waiting for a patent (legal protection) and they will publish as soon as they can. I have applied the same principles to tapering from other drugs. I’ve probably over answered your question, Rossa, but I hope it was helpful.Best, Nancy
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Hi Danielle, I’m so glad you wrote. Since I wrote “After Seroquel”, I have been very involved with psychiatric drug withdrawal, and while it’s very true that responsible research has not and is not being done. People are doing tapers and we are learning a lot. I am sorry to say that Dr. Breggin’s book on withdrawal is a joke to those of us out here in the trenches. We know that depending on the person, there can be enormous sensitivity, and that while some people really can withstand single and double digit cuts (1% to 10%) that those who are too sensitive crash and burn. It is a hell of a lot smarter to learn how to taper in steady microdoses, building up the cuts as the body gets stronger and then slowing down again as zero approaches. This is the safe way. I wish doctors would wake up. In the meantime we all have to start educating them. Even that, however, is of minor importance compared to the needs of the many, which is Right Now. I would be happy to communicate with you privately at [email protected]. I will continue on with some common sense observations for anyone else reading. Okay, so think about this; your body chemistry (not just “brain chemistry”) has changed in order to adapt to the drug. Withdrawal is traumatic to the body. Here are some ways we can reassure the body that it is not in crisis. Why is this important? Because when the body believes it is in crisis it also goes through adaptive changes. People sleep less (gotta be ready to run!), they feel anxiety (preparedness for acting on threats), fat storage patterns change (the body makes different choices to remain prepared for flight)…these are just a few. It’s not good to taper under those conditions. Splitting the doses into three eight hour doses (No Dry Cutting; you lose control over the dose) evens out blood sugar, blood pressure, and keeps an even dose of the drug passing through the liver in a 24 hour period. Addressing sleep issues naturally is critical. Being prepared to do that is of equal importance because the single most dangerous thing that happens in tapers is when people stop sleeping. Not only can’t they heal (you really need five and a half hours minimum) but people become suicidal, sometimes psychotic, and are often interfered with as if they were “having a relapse of “mental illness”. By being prepared to deal with insomnia effectively all that can be avoided. Strengthening the immune system is critical, as well as healing the gut, so it can absorb the necessary nutrients; equally important. Thanks so much for writing, you represent the new reality; Neuroleptics are being widely prescribed for sleep. I am beyond outraged. Best, Nancy+
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Dear Lynn, I’m so sorry you are going through this. If I can be of any support, my email is [email protected]. In the meantime I would strongly suggest that you go on the low histamine paleo diet which you can read about on Monica Cassani’s website, Beyond Meds. That will help a lot. Best wishes, Nancy
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Dear Claire, The answer is yes, you will sleep again. But supporting sleep is very important and when people allow themselves to get to a place of desperation (I know it all too well)we often wind up back in the clutches of medical people who only work with pharmaceuticals. Supporting natural sleep is both a science and an art. I still highly recommend Body Calm Supreme (140 strains of passion flower), which you can obtain through Amazon. I recommend it based on my experience and the experiences of many other people I have supported. Keeping your bedroom on the cool side, limiting stimuli several hours before sleep, processing the positives (counting your blessings) of the day, not eating after five in the evening……all these things have helped me and still do. In terms of supplements, it is critical to understand that your body has been stripped of B vitamins (and in particular Biotin and B12)and these vitamins are vitally important to the function of the nervous system. I take melatonin, many recent studies show that it supports the immune system. Some people don’t like it because of vivid dreams. I welcome that invitation into my subconscious. I also take unisom, a very mild antihistamine which helps me fall asleep and does not have artificial dyes. I suggest you do what you can to restore sleep naturally because it is the single most important factor in healing. There are many who belong to the “grin and bear it” school of thought. When it comes to sleep, I am not one of them. Now, to your real question regarding insulin resistance. In the absence of real research coming from the medical profession which profits massively from insulin resistance, we can only speculate. In the early days of my career as a true believer of the chemical imbalance myth, I gained sixty pounds. My memory of those years is spotty, but I lost it fairly rapidly by starving myself. I had a great deal of experience with that as a dancer; not the healthy route for sure. During the years I took seroquel the weight would creep up, and I would resort back to deprivation. I’m sure that took its’ toll, and I don’t recommend it. When I cold turkeyed off 100 mgs seroquel after many years of “consuming” it, my gut literally fell apart. The best thing I did for myself was to pay nearly 400 bucks out of pocket for a food intolerance test. In the two years since I have been recovering from seroquel, I have transitioned completely to naturopathic care, and even though there is no way I can sensibly explain “muscle testing” as a means of determining food reactivity, I am personally convinced that the results are accurate. Mystifyingly accurate. Along the way I have also explored orthomolecular medicine, accupuncture, and other energy based approaches. These journeys have led me to follow a low histamine paleo diet, and I have been doing this for over a year. What I have found is that removing wheat from my diet (American wheat has 52 chromosomes, it used to have 14) entirely has made the biggest difference of all. While before, I could not tolerate any dairy products, I now can enjoy them judiciously. I could not eat any starchy vegetables or any other grains, beans, or potatoes. Gradually that is changing. I only eat organic, and I do not eat any manufactured or processed foods (How I love John Cusak’s speech in in “Say Anything”). I don’t eat at all after five in the evening. I’m sure this sounds like a prison sentence to some people reading this, but let me tell you; anyone who has gotten to a place of abject terror over food comes to the place of eating to live instead of living to eat. What sounds extremely difficult becomes easy and routine, and feeling nourished and balanced is a far better reward that any momentary delight in indulgence. Having said that, I believe in moderation in everything, including moderation (Here I invoke the spirit of contributor John Shea)and occasionally I can be found at Baskin and Robbins with a scoop of Jamocha Almond Fudge and Mint Chocolate Chip, prepared to pay a larger price than the cost of the ice cream. The issue of insulin resistance is one that needs to be examined by the medical profession, but as an outsider looking in, in seems to me that the culprit has been the food industry since the nineteen fifties combined with the pharmaceutical barrage of symptom management. I personally suspect tha the changes in our food supply have made insulin resistance part and parcel of living in America. Can we heal? It depends upon what we mean by healing. If it means being able to return to the eating habits that brought us to this place, no, I don’t think so. But if healing means living more healthfully, the answer is absolutely yes. I hope this is helpful. You are fortunate, Claire, that you were only on seroquel for 9 months, but pay close attention to the forcast of a six to eight month kickback. If you’re paying attention, and you do have a resurgence of withdrawal effects during that time frame, you will be less likely to wind of going through unnecessary workups for things like fibromyalgia or MS. I’m convinced that we largely underestimate the body’s miraculous healing powers because we have been misled by those whose oath was to help us.
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I think some of this is unfair. I read Dr. Shipko’s article as his own clinical experience, and by definition that is a small group. Dr. Shipko also clearly stated the need for research. When people start threatening suicide because they are upset by what an individual clinician has written, this puts the entire website at risk. Each of us, no matter how dire our circumstances, has to take responsibility for ourselves. Either we want these conversations to be frank and open, or we’re asking to be paternalized. Hope is something we develop within ourselves, something we hang on to that serves us, and one doctor’s clinical experience or conclusions is not taking mine away. Personally, I did not read Dr. Shipko’s article as recommending hopelessness at all, and I feel that the comments section fills out the picture.
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Dear Dr. Shipko, While I very much appreciated your article, I was alarmed by the way you underplayed the dangers of benzos. It isn’t just the “dependency” or the dangerous withdrawal (not to mention disabling) that people need to understand, and which you did not mention, it is also the fact that dosage has to keep going up, and up, and up, if people are to remain on a benzodiazapine. This is very different that the case with ssri’s. I know people who can remain on a static dose of an ssri for many years if not indefinitely. Benzo tolerance requires increasing the dose continuously, and because they are controlled substances many doctors decide “not to treat” patients who then have to seek another “pusher” who often labels them “drug seekers”, and people often wind up cold turkeyed off high doses by the medical profession. Staying on benzodiazapines is not a realistic alternative for anyone. My partner read you ebook and made a case to me for “staying on” the benzo I am very, very slowly withdrawing from. From my perspective the prospect of remaining a prisoner to the prescription whims of an uneducated medical profession is a horror and infringement on my freedom that far outweighs the possibility that I may have to live with chronic pain. I’m already functionally blind from seroquel withdrawal, but at least I don’t have the indignity of continuing to be labeled “mentally ill” by doctors because of a prescription. I also don’t think you have discussed diet or other lifestyle issues that predispose people towards healing, or modalities such as accupuncture which has been very effective for me and many others I know in recovering from the effects of drug damage. I do want to commend you, however, in using the term “citizen scientists” because I felt it was respectful and appropriate. We are citizens (with the same civil rights as anyone else) and we are indeed becoming scientists, in the absence of the medical profession stepping up to the plate. Thank you for your article.
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Thank you annonymous for expressing that you thought I was referring to you, Ron, and Rossa when I wrote “Those who want to go along to get along etc”. I wasn’t at all, and I appreciate the opportunity to set this straight. I could not possibly have any higher respect for Rossa Forbes, whom I have only known as someone who goes out on a limb for the sake of others’, and to the lesser extent that I know Ron, I would still have to say the same. Because I don’t know anything about you, I would not presume to make any judgements……and as far as being judgemental goes, who am I to judge? I think it’s important to keep this what it is, a civilized debate with some disagreement. This is not personal, but it is about people. The fact remains that the statistic I used comes from WHO, and the 25 year claim did not slip by anyone. Both Robert Whitaker and the Editor Kermit Cole read every single word. The editing that we did was on the title. In my last article we did a little more editing. I appreciate the constructive criticism, annonymous, I just don’t happen to agree with you. I think the truth is a higher number than 25, and I’m here watching it happen. As a matter of fact, I have seen other articles by professionals using this same WHO statistic, Jim Gottstein uses it in his presentations, and this is the first time I’ve seen so much controversy over it. I did not write my allegory for the feint of heart, I’m just not that kind of writer, but I will continually be open to feedback, whether or not it influences me one way or the other. I’m sorry you thought I was attacking any of you. I respect all of you too much for that.Sincerely, Nancy
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Dear Rossa, thank you for your reply. I agree with you, the statistics are frightening (and our observation here in Alaska is that the statistic lowballs), but as you so effectively point out, statistics are not predictions for individuals, and without question the amount of care and close monitoring can make all the difference. Nonetheless the statistics don’t lie. Included in that onerous number are those who died in their teens and twenties as well as those who live into their seventies or even eighties. It is an average, and still a horrific one. I welcome this debate, and am gratified (thanks to my civil rights worker parents) to be stirring it up. As important as it is to remember that people are not statistics, they are individuals who have the capacity to make choices (even in altered states), it is also important to honor those folks who are unable to get off these drugs, so much has their body chemistry changed, and also those whose quality of life is enhanced, despite the health risks, to the point that their choice to stay on psychotropics represents an expression of their own best interest. That was not the point of my article, however. It was an allegory, and the number I used came from the World Health Organization.The question I have to ask is this, “Which is more frightening; to be told you have a brain disease you will never recover from that requires a life of disability taking drugs that make you feel miserable and sick(as I was told), or that the experience of distress and/or altered perceptions is something that many people recover from completely, or learn to manage with coping skills, and that while there is the option of taking drugs, they are neurotoxins that ultimately likely will shorten the lifespan if taken longterm?”. I would choose the latter, and I would assert that anyone considering taking these drugs has a right to know these statistics, no matter how frightening they may be. Informed consent is a basic right that no one should be denied. In an environment of trust and support we really could turn this around. The alternative approach is, ” Well now we know the truth but we should keep on lying because people will make bad decisions”, and many NAMI supporters take this tack, but in my view it is an unacceptable betrayal of basic human rights, and we have to work through this difficult transition without deceit.
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Since last night I have thought a lot about how two of my readers wanted my article changed so they would feel more comfortable about how “others” would see it. This morning my reaction is more well thought out. First of all the allegory involves extermination. The men who discovered the rats who had escaped sought to exterminate them. The allegorical parallel is the long history of brain damaging “treatment” forced upon patients/lab rats which essentially do the same. A psychiatric label all by itself is a sentence of social, if not physical death. I’m not going to argue any further the point that neurotoxins kill. What I think is particularly interesting is how this point ruffled feathers because this is indeed the very schism in our movement about which I wrote. Those who want to go along and get along will take issue with what I’ve written, or suggest I needed “guidance” (which I found very condescending)in shaping my message to be more “politically correct”. Others who read it will undoubtedly cheer that I have the courage to tell the truth without kowtowing to those who seek to censor. This is the divide. I know many psychsurvivor activists who have given up hope on this site because they feel our voices are being silenced for the sake of mainstream psychiatry’s participation here. I have also heard members of the psychiatric profession say they will have nothin to do with this site because survivors are included and they feel it attacks their profession. What I love about what Mad In America is doing is that there is an integrity in its’ inclusiveness. There are many strains of thought here, and for some mine may remain a radical one. I am more than comfortable with that. At the same time, I’m also pleased to be in the great company of scholars and practising mental health professionals with high ethical standards. I believe that this is what makes for movement forward.
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Point taken Ron, however the people I have known have died from bowel obstruction due to the drugs, and other organ failures ignored while hospitalized. While at PsychRights, the deaths I have witnessed have had to do with people not taking care of themselves because they were too drugged to do so, or homeless while under court ordered forced injections…..I could go on. So while I agree that I might have written that point in a different way, I still believe the evidence is strong that it is either directly or indirectly the drugs. And frankly, Ron, I simply don’t think it is possible to be too dramatic about what is happening. I think much more dramatic action needs to be taken because standing in front of APA conventions chanting, “What do we want? Human Rights. When do we want them? Now.” just isn’t working.
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Dear jm77, It has been over a year since I wrote this article and I have found
that James Harper,the founder of The Road Back Health, is far from an expert in protracted withdrawal. I am unaware as well as uninterested in his religion, be it Scientology or other. He is a nutritionist who has done excellent research and I continue to benefit from several supplements the company sells. Perhaps the most important two are the JNK Aminos and Body Calm Supreme (140 different strains of passionflower). I am sorry you have had bad experiences with a religious group, unfortunately this is not an uncommon experience. I don’t boycott the Salvation Army because I don’t agree with their religious backers. Don’t shoot the messenger. I hear that you have had bad experiences but I also think your advice is dangerous as well. Until doctors are fully informed about withdrawal, tapering, and protracted withdrawal syndromes they are, in fact very dangerous, as are the rehabs which push drug substitutions without the least bit of understanding of the physiological processes involved with each drug.The problem remains as I originally stated. The complete lack of research. The tragedy of completed suicides in the aftermath of drug discontinuation is a very serious issue, and I appreciate your bringing it up. I have also seen this, and have lost friends this way. There is no excuse for doctors prescribing drugs that they cannot help people safely withdraw from, and there is a desperate need for services; places of refuge,support in withdrawal, etc. Thank you for your 2 cents.
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Sandy, thank you for clearing that up for me, as well as making it clear that victims are being heard.
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Sandra, first let me thank you for your research. It means so much to so many. Secondly, if you have not read my piece, “After Seroquel”, I would rather not repeat myself except to say that the result of my withdrawal has been blindness (worse actually; corneal nerve damage, a condition over which many people commit suicide,and fibromyalgia. The real reason for my comment has more to do with health freedom and the UN convention on the rights of persons with disabilities. As much as I appreciate your caring attitude, this paternalism (or perhaps in this case maternalism?)leads you to believe that informed consent is a process. It isn’t. Either people are informed or they are not, and when they are not, this is a violation of their rights. I know I’m sounding black and white, as if I don’t understand what all is involved. In fact, I’m educational director for PsychRights, and what I do is to listen to hundreds of people per year (it has been since 2009). People who have been lied to and whose basic trust in physicians has been irreparably torn by the denial of their right to informed consent.That “process” you may have been alluding to means one thing to you. To another psychiatrist it may mean saying that ECT is “safe and effective” (as was said to me; it isn’t. I lost all memory of years with my young children, and an entire body of music I had composed).Perhaps a better example is the chemical imbalance lie. The rationale was supposedly caring. There really is a bottom line here, and the UN has made it law. We have a right to the truth and the whole truth.Psychiatrists will have to learn to handle their fears and concerns just like oncologists whose patients may choose not to make the decisions they think are best. This will not be an easy transition and the shape of our systems will have to change and adapt, but the denial of basic human rights to informed consent is not a process.
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Thank you, Leah. Jim (Gottstein) read this article to me and I’m heartened by your leadership on the issue closest to my heart. Victims have a right to justice and perpetrators have earned the right to the same consequences as any other common criminals. Jim struggled over the decision to go and confront Torre(sp?). I have been so sick (as a direct result of psychdrugs) that he was afraid to leave me. We both decided that this is a war that has to be fought, no matter what. We decided that it would be better to regret going than not going. There was some behind the scenes communication between the Heritage director, Stuart Butler, and Jim which did, to some extent I believe, set the stage. The presentation was obviously toned down, and Dr. Sally was clearly quite nervous. Jim had gotten permission to film and they knew this would be on youtube. My favorite moment was when Dr Sally admitted that she knew nothing about Open Dialogue…..and therefore has not read, “Anatomy of An Epidemic”. Now, if she really were concerned about science, or suffering people, or even drug company fraud affecting “patients”…..she would have done her homework. She didn’t. This is how it always goes with religious cults. Don’t read both sides of an issue; you might change your mind. And THEN WHAT? So instead she offered this (in a voice nearly swallowed), “Well I don’t know about Open Dialogue but I would question whether our same rigorous standard of measurements was applied” (OK so I may not have it word for word, but I’m close). YOUR RIGOROUS STANDARDS?????? Let’s see. We have the FDA panel suggesting you actually DO research ( as if Breggin’s 1985 APA address never happened)) on electroshock, and we have ghostwritten articles supporting research done by drug companies……..I’m wondering to what she was referring. I also enjoyed the squirming of the Doc beside “Fuller”. Ah, how he and Dr Sally loved Fuller. It was like a dysfunctional family dinner. I doubt the audience missed the continual fact check that took place after Fuller spoke each time. All in all, it seemed like a success…..except that Daniel Hazen didn’t get to handcuff himself to something. Don’t worry, Daniel, there will be more opportunities. Thank you Leah, and thank you, Ted, for your comments. In Solidarity, Nancy Rubenstein Del Giudice
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Dear Altostrata,Thank you for the wealth of information and resources you have generously provided for the readers of the piece I’ve written. Thank you also for giving me the specific opportunity to go a step further and say what really needs to be said. If you’ll notice, this was an op/ed, not a “Survivor story”. I’m sure you meant the very best in saying, “I’m happy that you’re healing”. It didn’t come across as I believe you intended at all. It felt like you put a happy face sticker on me. Mine is not a “survivor” story, it is a “Victim” story. First of all, you have made the assumption that I am healing. While I like to think that….hope is a better word…..I now have fibromyalgia and can barely move. Before I withdrew from
the 300mgs of seroquel, I was a NIA instructor, a vegan, had an extensive social life and loved to travel.I never in my life had known the terror of continued sleep deprivation. As a professional dancer (ballet/Jazz) beiginning in my teens, I have taken excellent care of myself all my life. Solely because New Hampshire’s Dr. Karl Lanocha took advantage of me when I was in despair over the imminent end of my long marriage and sold me the chemical imbalance/ drugs like insulin for diabetes lie, I am an invalid for life at 56. Let me be more specific about Corneal Neuropathy. It is 24hr pain. Even with my eyes closed most of the time (air hurts) the pain spreads to the bones in my face and by three in the afternoon, the headache is so bad that I am horizontal. This condition is considered by the world’s leading expert, Dr Perry Rosenthal at The Boston Center For Sight, to be “permanent and progressive”. Before patients are seen for this condition, they like people to see a psychiatrist (sic) to determine to what extent they may be suicidal. I’m not about to sugar coat this. Altostrata, please forgive me if it seems like this is directed at you; it isn’t. The point I want to make is that there is a gap in our mental health reform movement that I think is a symptom of a larger phenomenon. The denial of Victims. As long as this persists, the perpetrators will not be brought to justice, and the Victims will continue to be disappeared; in institutions, in hospitals, homeless, and in unmarked graves. I am not intersted in standing by while the “Mental Health” profession turns to new markets and engages in turf wars. This is genocide. This is not about medecine. It is about murder. Nancy Rubenstein Del Giudice
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Dear Vabossnurse, Thank YOU for sharing YOUR story. I wrote this article hoping to get the ball rolling on this topic.Of course it isn’t a topic, it is your life. Three years ago I was in the place you are……but I can tell you some differences between us straight away that may weigh in your favor. First, my last dose was 100 mgs, which I now realize was ill-advised. Also, I had a radical hysterectomy about three weeks later. I was completely uninformed about hormone replacement. I think Malene’s response above is excellent advice. As I mentioned in my article, James Harper’s book was my essential guide, and had I not run out of money for the supplements recommended, I believe things would have gone far better. I use their amino acids, Vitamin E, passion flower (for sleep) and biotin. Harper’s book is available free online. As difficult as this is for you now, clearly you have made an informed decision, and staying positive is crucial. For me and many others, becoming an activist to help others has allowed me to channel my outrage. The survivor/activist community really saved my spirit. You are in my prayers. Nancy Rubenstein Del Giudice
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