The United States desperately needs good programs to help people withdraw from neuroleptics, that is, antipsychotic drugs. From all I have seen and heard, there aren’t any — none at least that can reputably claim to get good results on a fairly consistent basis. Again and again I find myself challenged to envision such a program, and in reply to the challenge I have broken down this hypothetical program into various components, each of which I will explore in turn. I do not believe that any particular withdrawal program needs to have all of these components, though I do see some of them, as I will explain, as vital.
Meanwhile, before delving into the components I want to acknowledge how difficult it is to envision almost any good mental health program in the United States (or any Western country I’ve been to), considering the backwards and often human-rights-denying standards of care that programs, to one degree or other, are required to follow. Nevertheless, I wish to put on my thinking cap anyway.
So, the components:
All is voluntary
To me this is the most important component of all. Forcing people to do anything, even subtly forcing them, undermines independence, creates resentments, and in many cases induces trauma. If a neuroleptic withdrawal program practices force it ends up becoming a mirror image of a forced drugging program. Voluntarism, on the other hand, insures that people withdrawing from drugs are willing participants, guided by their own motivation.
A hopeful but realistic attitude and orientation
From top to bottom an organization needs to hold a hopeful, realistic, experience-based belief in the possibility that people can get off the drugs. Without this attitude and orientation, the work of coming off neuroleptics becomes that much harder. But hope mixed with naiveté can be dangerous. Although naiveté can often be harmless, because many people can and do come off the drugs easily, especially if they’ve only been on them a short time, in other cases naiveté contributes to setting people up for failure. It is simplistic to believe that everyone on heavy psychiatric meds can come off fully if they just taper slowly. That is why a hopeful, “let’s give it a try” attitude must remain bounded by reality.
Careful discussion beforehand of what might happen in the coming off process
Although people’s experiences of coming off neuroleptics vary greatly, I think it’s a good idea to let people know the range of these experiences, including what might (or might not) happen to them, before they jump into the process. I find it worth explaining about withdrawal upfront, letting people know that in some cases things might feel worse for them before they feel better. I also find it worth acknowledging that some people who have successfully withdrawn require a long time post-neuroleptics to feel they have returned to full health, and that much of this can come from lingering effects of the neuroleptics themselves. Although I would strongly wish to avoid inducing a nocebo effect in people, that is, inducing harmful effects in them psychologically just by presenting worst case scenario possibilities, I still think it’s vital to put the best, most realistic information at their disposal so they can most actively engage in discussion about the process they’re entering and make the most informed choices possible. (I discuss this more in the section on “Advanced directives.”)
Good support from others who have come off
When we face life’s rough road, it really helps to have others who have already walked that path to lend an ear, share their experience, be a cheerleader, be a support, be a beacon of light, and sometimes offer tough love. Also, a person who has been there can make an excellent advocate, especially when those coming off neuroleptics find themselves losing hope and energy. And finally, programs themselves get a huge boost of invigoration from the simple presence of people who have successfully come out the other side of neuroleptic withdrawal. Their credibility, won by personal experience, goes a long way.
Gather detailed information from those who have tried coming off
Hand in glove with the previous two sections, I believe a good program, in order to really be as systematically useful as possible, should gather a broad amount of detailed information from those who have tried withdrawing from neuroleptics, regardless of outcome, and learn from their experience. Because helping people withdraw from neuroleptics in a systematic way is largely unexplored territory, the real experience of those who have tried it is vital for both building and making use of a knowledge base.
Healthy Routines
Too many people I have known have had the healthy routines of their lives destroyed by neuroleptics. And many had shaky routines before they even got on neuroleptics. Building or rebuilding these routines can be one key to getting off the drugs. Part of these healthy routines can be eating meals at regular times, going to sleep at regular times, waking up at regular times, having emotionally and intellectually nourishing activities to look forward to at regular times, avoiding caffeine and super-stimulating activities in the evening, and having fun things to do at expected times. Having good things to look forward to in one’s day and one’s week can make it all the more easy to wake up, get out of bed, and get moving when one’s inner world or physical world may be screaming for the opposite. Also, routines give life a greater sense of value and purpose. Without routines it’s easy to get stuck in a big rut, which is something many people coming off neuroleptics cannot afford. One program that I love that encapsulates the idea of healthy routines is the Family Care Foundation in Sweden. People in their program live with a family, many times a farm family in the Swedish countryside, and, if all goes well, they become part of the family. Rather than being pressed into artificial institutional routines, which many people (myself included) find insulting, people in this Swedish program want to participate in the regular routines of family life — because it feels good.
Healthy alternative activities
I think it’s great when programs offer alternative activities for people coming off neuroleptics, such as (but not limited to) yoga, meditation, exercise, dance, acupuncture, massage, volunteering, discussion groups, gardening, writing groups, journaling groups, 12-step groups, hiking groups, adventure groups, nature groups… The list can go on and on… Also, I would like to add working for money into this section. For many people there is nothing more inspiring than earning one’s own keep, even if it can add stress for some on government disability, as it can put them at risk of losing their benefits, including their health insurance.
Consider having an experienced psychiatrist on staff
Although there is a credible study (the UK’s MIND study) showing that people are just as likely to get off psych drugs without a psychiatrist as with one, a good psychiatrist can at times be invaluable. The reason I think the MIND study is valid, however, is that I would bet money that most of the psychiatrists whom the people in the study saw were like the far majority of psychiatrists I have met: not well-versed in the ins and outs of neuroleptic withdrawal.
An experienced psychiatrist knows about the science of rebound psychosis, knows all about tapering, has a good sense of how fast and how slow to try going, knows which drugs to suggest coming off first, knows replacement drugs to make the coming off process easier (such as certain benzos, short-term or as-needed, which some people have found helpful), has a lot of experience of seeing others through the process, and isn’t arrogant or power-hungry. An experienced psychiatrist is also a great listener and has a strong sense of intuition — and the highest degree of respect for the person withdrawing, and for their autonomy. An experienced psychiatrist also knows about doing good medical work-ups, knows about testing for toxicity levels of various drugs, knows about nutritional supplements, knows about potential organic causes for psychiatric conditions, and understands potential iatrogenic effects of the drugs themselves. Sadly, such psychiatrists are extremely rare. But some do exist…
A ton of support
From what I have observed, many people coming off neuroleptics need a lot of support: far more than we often recognize. The process can be literally hell for many people, both physically and emotionally, and it’s incredibly helpful to have allies around who are compassionate, nonjudgmental, flexible, and respectful — and, equally importantly, who know when to back off and give people their space. A lot of the people I know who successfully got off neuroleptics had close friends or family to support who filled this role, sometimes 24/7. Thus, it really helps if a program can provide a sort of surrogate family or friendship network for people. But I would never expect a selfless “perfection” from a support system. After all, supportive relationships have to be bound by some sort of limits. Friends and allies can only give so much, and I think it’s helpful for people coming off neuroleptics to know where these limits are. The key here is having supporters who are not selfless, but instead have good boundaries. This is the key to respect.
Support for the supporters
Being there for people who are coming off neuroleptics can be exhausting. Lots of people in support roles burn out. Many people who are in and out of the psychiatric system and have been on and off neuroleptics have become alienated, sometimes permanently, from past allies. Sometimes the pressure was just too great on the allies. For that reason I find it vital that the people who are operating as primary supporters for people coming off neuroleptics also have their own support systems. Again I give a nod to the Family Care Foundation in Sweden. The primary supporters of those coming off their drugs, the surrogate family homes, need their own support, and so they have a supervisor assigned to them — a family therapist who is experienced, respectful, caring, and available — whom they can lean on and bounce feelings and ideas off of not just when the going gets rough, but all the time. Many of these family homes have told me that had they not had this supervisor they simply could not have handled the work. It would have been too overwhelming and they would have quit. But I want to make clear here that I do not think that any of these supporters need be professional. In many cases I think non-professional support can be even better.
Therapy
Although a lot of people who have ended up on neuroleptics resist the idea of going to therapy, not just because therapists are so commonly sub-par in quality but also because therapy is often pushed forcibly, good therapy has proven very helpful to many people coming off drugs. Good therapy can offer a safe space to process feelings that bubble up, or even burst up, during neuroleptic withdrawal. But good therapy for people coming off neuroleptics is very rare. Most therapists that I know have no clue how to be useful here, and instead just prove harmful. Often they mistake common problems of coming off the drugs with problems that they feel require a referral to a psychiatrist for more drugs! In other cases therapists fear their clients or become terrified of clients’ feelings, and also lack insight and empathy into clients’ situations.
A good therapist, on the other hand, empathizes. A good therapist listens well and cares. A good therapist is not afraid to challenge clients, sometimes bluntly, if they are acting or thinking in self-undermining ways. A good therapist is emotionally strong, yet vulnerable all the while. A good therapist maintains utter confidentiality. A good therapist strives to earn his or her clients’ trust, but knows that this takes time. And a good therapist does everything in his or her creative power to help people who want to come off the drugs get off them and stay off them long-term — and stay out of the hospital.
Also, although this goes without saying, a good therapist knows that all good therapy must be voluntary. Otherwise it’s tainted from the beginning.
Basic community rules
Any good program must have rules to protect its members. The main rule I see involves maintaining safety. Program members, be they participants or workers, have the right to feel safe — both physically and emotionally. Thus, violence and threats are not acceptable. Nor is sexual harassment.
But sometimes these matters fall into a gray area, and for this reason a program must have a healthy means for conflict resolution, as a community, as soon as problems arise. Meanwhile, another similar area that often necessitates community rules involves illicit drug and alcohol use. Some programs have a zero-tolerance policy here, yet others are not so strict. The key that I see is protecting the safety and harmony of the community — and the healing paths of its members. Since every community is different, and one community might be different at different times, I prefer a flexible, as opposed to a one-sized-fits-all, approach toward developing community rules. But I also try to remember that all of life has rules. Society and interpersonal relationships have rules regarding what is acceptable, and I find it important that a program, to some degree, reflect this.
Community meetings
Safe, boundaried community meetings offer people a chance not just to share with their fellow community members what’s going on inside them but to get structured, respectful feedback and to process what’s happening in their interactions with others. For so many people, neuroleptics skew their relationships with others, often making it difficult to have solid interpersonal footing or confidence. Similarly, coming off neuroleptics can shake people’s interpersonal confidence. Also, many who end up on neuroleptics experienced interpersonal difficulties before they got on the drugs. Thus, anything that offers people the possibility of building or regaining their interpersonal confidence, and building or regaining it in a safe, open, nurturing, authentic environment, wins my vote.
Free or low-cost
Aside from Soteria-Alaska, which isn’t really even geared for neuroleptic withdrawal, I don’t know a single free or low-cost program for voluntary adults in the United States that even attempts neuroleptic drug withdrawal. Good neuroleptic programs should be available to all who need it, without regard for their ability to pay. It’s stressful enough to come off neuroleptics without having to worry about going into debt or having your parents or other relatives go into debt for you.
As it stands, some of the American programs I know that do offer a neuroleptic withdrawal component are funded largely by adult clients’ wealthy or upper middle class parents. I also know parents who have mortgaged their homes or liquidated their inheritances to finance unsuccessful neuroleptic withdrawal. I have also seen cases where drug withdrawal is going well but parents run out of funds mid-stream — and have to pull their adult children from the program. This can be devastating for everyone. Much better to have finances be a non-issue in the withdrawal process.
Transparency about success and failure rates
I feel a good neuroleptic withdrawal program should share honestly about its rate of success and failure to give prospective clients an opportunity to make more informed choices. I know few, if any, programs — or therapists — that are really transparent in this regard. And some, from what I’ve seen, seem to be purposefully opaque, because this helps them stay in business. And I have seen other programs that I suspect are simply dishonest: they claim good rates of success with neuroleptic withdrawal yet present no evidence whatsoever.
Advance Directives
When people come off neuroleptics things sometimes get ugly, not the least reason being the damage, hopefully temporary, the drugs have done to their brains. Sometimes people can get violent or threatening and sometimes people can present a danger to themselves. A good program strives to avoid these situations whenever possible, but sometimes they may be unavoidable. I have seen many programs handle these situations poorly, with staff members pressing the proverbial panic button before other options have been explored, let alone discussed in advance.
The end result, all too often, is more trauma heaped on already traumatized people. One potential solution for this is that each person, before they enter a program, lead the way in creating an advanced directive for himself or herself. Although I noted earlier that I have no desire to induce a nocebo effect and scare people into thinking that horrible things will happen to them when they come off the drugs, I think it’s vital that people know the range of possibilities of what could happen as they come off the drugs, and then have the primary say in what they want to happen to them in such cases. Would they want to be hospitalized under certain circumstances, or not? Would they ever want to be physically restrained, and if so, how? Would they want to have certain doses of certain drugs raised, if only temporarily? Do they have a different plan? What would they like to happen if they stopped sleeping for a week and lost their rational ability to communicate?
I think people and programs need to come up with rock-solid plans, voluntarily and mutually agreed upon, for how to handle and move through these situations, so no one ends up with the rug pulled out from under them. Meanwhile, if people and programs cannot come up with mutual agreements about these things then I take this as a sign that they shouldn’t end up working together, and that the person should seek, or try to create, other alternatives for drug withdrawal.
However, I am not totally on board with traditional advance directives, because I could still so easily see them being used to take away a person’s rights when they are in a vulnerable position. What if a person later disagrees with his or her advance directive? One possibility here is that a person have the option of canceling the advance directive at any point, no questions asked, on the spot — and simply leave the program voluntarily. I think anyone should be allowed to leave a program at any time, advance directive notwithstanding. For me, the key, again, is that every program for neuroleptic withdrawal needs to be utterly voluntary.
Excellent article. I think the original MIND study found about 50% of people were succesful in comming of thier drugs. I would hope that if proper support was avaialable much more would be succesful.
I know several people who have ended up back in hospital after abrupt withdrawal from these drugs. This can be very discouraging with people thinking they cannot cope coming off but also hating taking the drugs.
While some can indeed come off these drugs with very little harm some cannot. Researching, designing and implimenting good programmes to come of these drugs is a lot of work but something that needs to be done if we are to help people who want to withdraw do so with a reasonable chance of succeeding.
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good points. and good to hear from you, John!
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Daniel,
That this is an *important* topic you’re raising goes without saying. While it has been raised by others (including other bloggers) on this site, this blog post of yours seems, to me, a unique catalyst for discussion – as it covers so many bases.
Amongst those bases, you are (most importantly, in my view) stating, that: such a program would need be voluntary.
In my view, the *voluntary* aspect is absolutely key and vital.
Therefore, about your conclusion (wherein you say, “I think anyone should be allowed to leave a program at any time, advance directive notwithstanding. For me, the key, again, is that every program for neuroleptic withdrawal needs to be utterly voluntary”), I will point out my personal opinion, that: Any advanced directive that might include wording, which could eventually subject a person to *forced* and/or *coerced* ‘medicine’ is purely a mistake.
That’s just my personal opinion; from what you are saying, I suspect you feel similarly; however, your second to last sentence, perhaps, conveys a sense of wavering, on this principle; but, maybe I misread you there.
(I just don’t know what you mean when saying, “I think anyone should be allowed to leave a program at any time, advance directive notwithstanding.” …Perhaps, you could clarify?)
Simply: *never* would I care to involve myself (in any way) in a program that led to forced and/or coerced ‘medical treatment’ of *any* kind.
(In my view, all the worst ills of psychiatry itself are born of its use of force and coercion.)
I may or may not comment again, in this discussion; but, thank you for starting it. I’m very much looking forward to seeing where it goes…
Respectfully,
~Jonah
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hello jonah. i’m enjoying reading these comments. in reply to your comment about my wording of “advance directive notwithstanding”: i guess i mean that if someone puts something in their advance directive that allows for force or even requests it in certain circumstances, and then later changes their mind, then their later decision would trump their advance directive. don’t know if that came across clearly… but this is tricky stuff — it wasn’t easy for me to word it right. personally because i have a lot invested in this subject emotionally. –daniel
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Thank you Daniel for addressing the issue nearest and dearest to my heart: supporting folks who would want to try coming off psych drugs. And moreover, for addressing coming off regarding the most pernicious of psych drugs, the nasty neuroleptics.
I’m all about more dialogue and more action around this topic!
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yes!
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Dan, i absolutely agree with you! This is on my mind a lot, and if there’s any way i can help in this i want to do it. Thanks for your efforts. You’ve clearly thought this through in great detail, and it’s encouraging to know someone else shares my concern about this. Thanks again for your excellent videos on Open Dialogue and Healing Homes, which i purchased and highly recommend to anyone interested in knowing about mental health alternatives that work!
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thanks!
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Dan, fantastic post. You bring up a host of issues which immediately strike as very important and that aren’t much discussed, even on MIA. My personal experience is being the parent of an adolescent on a neuroleptic and supporting him along in the discontinuation. Almost all the points you make in the context of social programs translate directly to what may happen at a family nucleus level.
I do have a few comments that may seem like nit-picking. I intend them to be clarification or elaboration from my perspective on your words. First, when I see the words science and psychiatry in the same sentence I bristle, as in a psychiatrist that “knows … the science of rebound psychosis”. I also would disagree with qualifying as knowledge much of what they believe in. Most people anti-psychiatry – like many victims of psychiatry and myself – will nevertheless agree that biochemistry is a science. So it is important to have someone with an up-to-date understanding of the chemistry of all drugs involved, their physiology with the ramifications, and the clinical studies. You also need someone to prescribe them while they’re still being used. However, so far psychiatry as a discipline has rejected any attention to the study or knowledge of withdrawal; as far as I know the core of that knowledge is currently to be found in books like those of Breggin or Ashton or the Icarus Project or a few others and in the blogs, not in the academic journals. I would even question if the training of a medical or a psychology professional is particularly suited or provides any particular advantage to the general understanding of the withdrawal process. In your text you single out explicitly the psychiatrist as someone needing to “know” about tapering, about the pace, which drugs to go off first, to be experienced in withdrawal, to be a great listener, to have intuition. Those are knowledge and skills that *everyone* on staff should have. The psychiatrist has no particular authority in any of those areas. It reminds me of the story of when Dan Fisher, the blogger on this site, was first hospitalized. The only helpful person was the corpsman. The role of medical doctors in a drug withdrawal program should be like that of the EMS people present in a public gathering. It’s best when they just watch.
The point you avoid making explicitly is that psychiatrists, in the role they currently have in dealing with people suffering, need to be drastically disempowered. This is a huge problem, the biggest obstacle, in the realization of a model in the vein you propose. The bottom line is about power. Last time around Mosher was crushed, but much of his legacy, which you build upon, is far from dead.
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hi PC — good points. you actually help clarify some of what i tried to express. by no means should the psychiatrist be the only one to have many of the skills on his or her skill set. many of those skills should simply be common knowledge. i think part of the reason that i listed many of the skills i think a good psychiatrist should have is that almost none i know possesses them, much less many of them…
but, there are some real benefits of having a trained medical professional as an ally in the tapering process…if only, at the very least, because the drugs cause actual medical problems!
and i also think of grace jackson, m.d. i’ve had some great conversations with her, and they always leave me feeling humbled. she’s a psychiatrist who really knows a lot!
all the best,
daniel
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You’re right, Dan. Anybody in a neuroleptic withdrawal program will be almost certainly sick. By definition. The body may have been perfectly healthy the first time it walked into the psychiatrist’s office, but by the time it walked out, it was destined to become ill. So really, what you are saying is that a medical doctor is needed on staff, to tend to the ills of the body. But originally you specifically call for a psychiatrist and then qualify that they are extremely rare.
When the first such program becomes a reality and you put out the job description for hire, you might be better off by requiring a medical doctor knowledgeable in the pharmacology, physiology and clinical literature of psychotropic drugs. There is a good chance you may have to reject the nine psychiatrists who show up and hire the only non-psychiatrist that wouldn’t have applied had certification been required.
To be fair to psychiatrists, Thomas Szasz, Loren Mosher, Peter Breggin, Marius Romme belong to their ranks. Maybe a good way to define that extremely rare set of psychiatrists you refer to are those who reject most of what they were taught in school.
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Dan,
Well thought-out.
Sounds like a winning approach!
Best,
Duane
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thanks duane!
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Hi Dan,
Thank you for this post. I was wondering if you could clarify the role of the supporters and others who are involved? Is the hope that if this is done well, the person will not experience the problems, for instance, hearing voices, that led to his starting these medications or is the idea that as these experiences occur, people around will help him to tolerate it better? What is the nature of the pain, that people feel as they come off? When you say it can be hard, could you elaborate?
I guess I would make it more explicit that a harm reduction approach is the goal so that if one leanrs that one can reduce by 50% but maybe not stop them completely, that is still worthwile.
Thanks,
Sandy
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I can elaborate on the nature of the pain that people may feel when they come off.
I think people can have the same symptoms as caused them to come into contact with services in the first place but much more severe. So one person I knew felt pins being driven into his ear when he answered the phone when he came off his meds and also heard voices which were much worse than usual. I know someone else who became much more angry than they had been before, resutling in them taking a hammer to a neighbours door, when they came off drugs. So relapses can seem worse when people come of these drugs suddenly if they have been on them for some time than the original problem.
One person became manic, not sleeping and talking fast. He had never been manic before.
I believe there is another article on this webiste which says violence can rise when people come off these drugs.
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hi Sandra,
good questions. hmm……well, i don’t think there should necessarily e a goal in what the supporters would be attempting to accomplish in terms of what will happen to the person reducing meds, instead, i see the role of the supporter as simply to be supportive of what the person himself or herself wants. basically, i see a supporter as a caring, mature, real, open person…
i liked what john said about the pain that some people feel when they come off. maybe i’d add that some people find the process simply torturous: physically … mentally … emotionally… that’s what i’ve heard.
i also like what you wrote about being more explicit about it being a harm reduction approach. and i’d also add that in this hypothetical program there were be tons of free copies of will hall’s “harm reduction guide” for everyone to have.
cheers!
daniel
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Sandra, Daniel’s documentary ‘Healing Homes’ is so helpful to answer your question. In a vacuum, you think about supporting a person going through that and it sounds so overwhelming and scary, but if you listen to the stories of the host families in ‘healing homes’ you realise that in reality, it is just so simple and beautiful. It all seems to be about simply being human, being humans in our suffering, and being humans in helping others through that suffering. The rest just seems to follow, whatever shapes it takes, whatever moment comes next, what matters seems to be that in the ‘now’, we are able to be present and be kind and be compassionate. If Daniel movies teach something, I think, it is that what we need most from supporters is not science, or research, or hospitals or medicines, but human beings that can tap into their humanity and give themselves to others, to allow themselves to be as raw as the person suffering is being. The documentaries also teach that although it is very hard work and the journey can be rather long, we have to trust the process, that at the end it will be a positively transforming experience for everyone involved, and the hard work just seems so worth it, and even magical. Daniel shows us that, as we are all susceptible of going through a extreme state, we are all also capable of supporting others while going through those extreme states.
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Thank you for this practical and thoughtful plan in hand to help people who need to begin this important discussion with their people. It’s a promising tool to offer someone who would like to take charge of starting the tapering process and gathering their community of support.
Please come speak in Vancouver, BC if you’re ever traveling along the West Coast. For many of us, you’ve been an important and generous teacher in the not-for- profit college of treatments that work.
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thanks, diana!
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I’ve worked for over 25 years in addiction treatment and think that the information on “post acute withdrawal” syndrome should be helpful with neuroleptic withdrawal. Also, the is something called the “Discontinuation-Emergent Signs and Symptoms Scale,” developed by Maurizio Fava for antidepressant withdrawal. See his article “Prospective Studies of Adverse Events Related to Antidepressant Discontinuation” in J Clin Psychiatry, 2006:67; supplement 4: 14-21.
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Joseph Glenmullen’s The Antidepressant Solution exhaustively describes how to monitor for withdrawal symptoms while tapering.
There are hundreds of journal articles about psychiatric drug withdrawal. Some of them are collected here http://tinyurl.com/aqg3bjo
Chuck, I would very much like to see whatever literature you have on post-acute withdrawal syndrome. My e-mail is survivingads at comcast * net
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Daniel Mackler, thank you for bringing up this very important issue again. The difficulty of getting off psychiatric drugs shadows every discussion of non-drug alternatives.
But — if I hadn’t been beating my head against the wall for years trying to educate about psychiatric withdrawal, I wouldn’t have believed you could leave out the MOST IMPORTANT aspect of safe psychiatric drug withdrawal.
This should have been the first item on your list: Understanding what TAPERING means.
As in your article, there is a lot of emphasis out there from psychologists on “support” for the person withdrawing, as if the only issue was the emotional distress of dealing with a changed situation or maybe relapse.
But prescribers all over the world, including the vast majority of psychiatrists, are actively injuring people by not understanding even the basics of TAPERING.
It’s a lie that withdrawal syndrome is mild and lasts only a few weeks. It can be very severe and last for years. It amounts to iatrogenic neurological dysfunction. The risk of withdrawal syndrome can be reduced by TAPERING.
TAPERING means a gradual, progressive, systematic reduction in dosage. The consensus among peer support sites is that 10% is a rate of dosage reduction that minimizes withdrawal symptoms.
People who are sensitive to dosage reductions may need to taper as slowly as 10% per MONTH, calculated on the last dosage (the amount of decrease gets continually smaller). People who are very sensitive may be able to reduce by only a fraction of a milligram per month or longer.
Does this seem onerous? Psychiatric drugs are tremendously powerful. Read case histories here http://tinyurl.com/3o4k3j5
If a person does not have the self-discipline to taper at 10%, even reductions of 10% per week are safer than decreases of 25% or more at any interval.
(NEVER skip doses to taper — this is an old wive’s tale going around among doctors. It’s second only to cold turkey in eliciting terrible withdrawal symptoms.)
Cutting up tablets, using liquid preparations, and customized prescriptions from a compounding pharmacy are a few ways you can accomplish gradual tapering.
You say “helping people withdraw from neuroleptics in a systematic way is largely unexplored territory.” Excuse me???? I’ve got hundreds of pages of information about tapering here http://tinyurl.com/42ewlrl and symptoms here http://tinyurl.com/3hq949z Journal articles are here http://tinyurl.com/aqg3bjo
I spend hours every day giving people tips about tapering.
Let’s stop pretending that neuroleptic withdrawal is a black box. There is actually a great deal known about it. There are some big lies — that withdrawal syndrome is trivial and lasts only a few weeks is the biggest. I’m glad ChuckSigler mentioned “post acute withdrawal” syndrome — many people who believe they’ve relapsed after withdrawal are actually suffering from this.
Prolonged withdrawal syndrome from psychiatric drugs is largely denied by psychiatry. David Healy is one of the very few authorities who have warned about it.
There is no information about success and failure rates, as you mention above, because proper systematic TAPERING is so infrequent.
As far as leaving TAPERING to the “good psychiatrist” you’ll have on board — try to find one. Very few psychiatrists know how to taper. I wish I were exaggerating. This is the only list of such resources that exists http://tinyurl.com/7cp8l8v and it was incredibly difficult to find them. (If you know of a doctor knowledgeable about tapering, please write me at survivingads at comcast * net)
Here’s what patient advocates need to do to provide a safe avenue off psychiatric drugs: Educate themselves and doctors about TAPERING.
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hi altostrata — i actually did mention tapering twice in my article, but could have given it more attention. of course tapering is, in many cases of coming of neuroleptics, vital.
i do challenge you on the following:
I wrote: “helping people withdraw from neuroleptics in a systematic way is largely unexplored territory.”
you replied: Excuse me???? I’ve got hundreds of pages of information about tapering here http://tinyurl.com/42ewlrl and symptoms here http://tinyurl.com/3hq949z Journal articles are here http://tinyurl.com/aqg3bjo
my thought: i agree with what you’re saying, but the only thing i think that’s unexplored is helping people withdraw in a “systematic” way. yes, there’s tons of info out there on withdrawal, but not enough of it has been systematically collected. it would be nice to have it collected systematically.
but everything else you say i agree with.
all the best,
daniel
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If by “systematically” you mean studies by medicine, you are correct.
If we wait for some authoritative study to come out of psychiatry about the proper rate of taper, we will be waiting a very, very long time. The problem of withdrawal syndrome is widely denied by medicine.
In the meantime, millions of people — I am not exaggerating — are at risk of improper tapering and developing long-term withdrawal syndrome.
(Thus, peer support sites like mine offer the only tapering coaching available to many people. There are about a dozen or so such sites.)
If we want any studies, we will have to do them ourselves. That is why I collect case histories here http://tinyurl.com/3o4k3j5 It behooves the MadinAmerica community to respect the knowledge of peer counselors like myself in this area.
Allow me to explain why tapering, and not support, should be the focus of a withdrawal program. If the person develops withdrawal syndrome, a psychotherapist will be supporting someone with a chronic medical condition, not someone with a clear horizon for personal growth.
I must stress — the major risk in psychiatric drug withdrawal is not relapse but withdrawal syndrome.
Psychiatric drug withdrawal programs are misconceptualized as inpatient programs. You will not be able to get most people off psychiatric drugs in a few weeks or even a few months of inpatient care. The rate of taper should be tailored to individual tolerance, not to an arbitrary schedule set by an inpatient program (and insurance coverage).
The addiction medicine model does not apply to psychiatric drug withdrawal. People do not have to be retained as inpatients to make sure they are going off psychiatric drugs. Usually, they are all to willing.
Psychiatric drug withdrawal should be conceptualized as an OUTPATIENT service (with informed inpatient services available to the minority with extreme negative reactions to dosage changes; this is NOT available now). Clearly, it needs to be decentralized to serve the millions who need it. Who should do it? Individual physicians.
How can psychotherapists assist in getting clients the medical help they need in tapering? First, educate yourself about the tapering process. Joseph Glenmullen’s The Antidepressant Solution is probably the best book on this subject (although I disagree with his rate of taper).
Once you educate yourself about the process, you will be able to talk to physicians about it. Any physician you ask will claim to understand tapering; you will need to ask questions to find out how much the person actually knows.
One red flag is a reliance on skipping doses to taper. If a doctor does this, he or she knows nothing about tapering.
Find out from the physicians you have contact with who gets the concept of tapering. Share this information by putting these doctors on a central list that patients, therapists, and other physicians can see.
Speak in your local and regional organizations about the need for careful, individualized tapering to get off psychiatric drugs safely.
I’m sorry to be so grouchy about this, but I’m quite frustrated by the insistence that nothing is known about tapering because the doctors you know don’t know squat, and the genuflection to psychiatric mythology.
Something is definitely known about tapering, and that is: Slower is better, withdrawal symptoms should be all but absent.
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i like the points you make, however, i think you may have somehow gotten the idea that i disagree with what you’re writing. i agree with it, but take tapering as a given for most people, and for that reason perhaps did not emphasize it enough.
all the best,
daniel
p.s. i checked out your website. i’d never seen it before. looks like a very good resource. thanks.
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Yes, it’s clear to me you assumed tapering was a given, and that’s why I’m so exercised about your post.
Your assumption that “tapering is a given” is incorrect, and that you can simply get a psychiatrist on staff who knows how to do it — problem solved.
The ignorance of the medical profession about tapering is why so many people are terrified about going off their drugs. They’ve heard stories of bad tapers, they might have had such experiences themselves, their fears are well-founded.
Now, about one of the points you put forward above: “Gather detailed information from those who have tried coming off.”
I’ve given you hundreds of case histories http://tinyurl.com/3o4k3j5 , scientific literature http://tinyurl.com/aqg3bjo , and even tips about tapering specific drugs http://tinyurl.com/42ewlrl
It’s all tied up in a neat package for you. What are you and your colleagues going to do about it?
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I forgot to add that I’ve run into many people that simply stopped taking the anti-depressants. One got nothing out of the anti-depressants and simply stopped taking them. Had no idea how they were supposed to help, and thought it was ridiculous. Another girl said that they made her violent, but her parents refused to allow her to not take them; so she had to leave the house, and couldn’t tell her parents she wasn’t on them. Another friend had a daughter that had somehow gotten on them, but when I told her about the truth of these “medications,” her daughter was able to get off of them after having a head ache for a couple of weeks.
These are anecdotal stories, of course. But I’ve heard a lot of them.
I wonder that when a person actually is in stress, actually does have real “problems,” that when administered these “medications” it really causes difficulty in withdrawal. Which would truly point out the need for help with withdrawal. The need for therapy. But still, when therapy involves quaking fear for what what’s going on, massing up evidence of the dangers of withdrawal, this can strengthen the hold the drugs have on the body through fear. And it’s the same with therapy which promotes a victim status rather than an understanding of trauma, which promotes an understanding of the human condition in general and promotes an understand of all trauma (including what the perpetrator must have been through to become that part of the story). I have experienced when someone used their reliance on the medications to avoid open dialogue, as well as a victim status (and all the privileges that entails). I think that this is what Marion meant.
There are also many people who would be called “unmedicated,” by the psychiatric profession (and even the legal profession). These people might live a quite odd life, but they really aren’t part of the grind waging wars, creating economic bubbles that burst causing havoc, aren’t running the penal system traumatizing everyone. The only thing they really might “need” is someone to talk to them, to treat them like a human being. A place where they could talk about all the experiences they’ve had in life and fail to be seen as misfits, but validated as having actually lived and experienced……..
And these people I think are often already off of their medications. So, there’s a lot happening where people just got off of their medications when there’s no dialogue with them (whether they are seen as “unmedicated” or not even counted as people that got off of medications). I think if one would engage with these people it would make quite a bit of difference. Certainly the “unmedicated” ones, when simply validated as humans, would show a whole different way of looking at human emotions than depending on “medications” whether it’s in withdrawal or as numbing agents.
It’s fine to have this whole scheme, this whole program, but would it actually embrace so many of these people who already are “unmedicated” and their need for anarchy (artistic dadism); or would they not fit with the program there as well?
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“Allow me to explain why tapering, and not support, should be the focus of a withdrawal program.”
Allow me to explain why I think, the focus should be, as it is in Daniel’s post, on both equally. No matter how carefully planned and carried through a taper, if the issues that underlie the problems the person was prescribed the drugs for in the first place aren’t addressed properly, there’s a good chance the person will end up in dire need for those very same drugs once more. I see it all the time, people who believe their only problem in life to be their psych drugs, and if only they can get off of them safely everything will be just beer and skittles. The bigger the surprise then, when things don’t turn out just beer and skittles. Let’s face it, shall we: people hardly ever end up labeled, and/ or drugged for no reason at all.
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nice points marian. i agree.
altostrata:
you wrote: “Your assumption that ‘tapering is a given’ is incorrect, and that you can simply get a psychiatrist on staff who knows how to do it — problem solved.”
hmm…..i never said that you’d simply get a psychiatrist on staff who knows about tapering and everything will be okay. if i had said that i’d be criticizing my writing too.
also, when i said that i take “tapering as a given for most people,” i mean in the hypothetical “good” program which i’m exploring, not in already existing programs in general.
daniel
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Actually, people often end up medicated to the gills for no good reason.
90% of those on psychiatric drugs in the US are on antidepressants.
My hypothesis — which I believe would be confirmed by a study of systematic tapering — is the horror stories you hear of relapse are severe withdrawal syndrome from too-fast tapering. Those symptoms can include symptoms mistaken for psychosis.
However, with all due respect to psychotherapists, there are many people going off their drugs without need for psychotherapeutic support.
Many therapists, believing psychiatric drugs are essential to treatment, will discourage the person’s plan to go off.
Going off drugs without tapering is risky, but going off drugs without a therapist is very doable.
That said, supportive therapy is a very good thing to have while tapering, if only to work through the distrust for doctors the process engenders and the realization that one has wasted many years in a drugged haze.
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“Actually, people often end up medicated to the gills for no good reason.”
I haven’t met any of them yet. What I have met, though, is people with serious physical health problems being given SSRIs “preventively”, because we know that many of these people have a tendency to get depressed because of their serious health problems. And I’ve also heard how this “preventive” drugging in some cases has been the start of a long career as a psychiatric “patient”. Anyways, even in these cases, to speak of “no good reason” is a little naive, bordering to denial. The question is whether drugs are the answer, or whether things could be dealt with in a different, much less harmful way.
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I’ve lost count of how many people I’ve run into who were prescribed anti-depressants; just because they encountered what anyone else would in life (who knows what, something that the doctor had been drilled to ask them whether they wanted or even tell them they should try an anti-depressant for: anything from social anxiety, loss of a loved on, which happens to everyone, to having any kind of difficulty anywhere). It’s really quite (I want to use the word insane, which has lost it’s meaning already).
It’s really like a war zone and the one consistent thing is that the only way to find peace is to try something different than the violence which is promoted as a solution in war. I’m saying this because the real “problem” people have from the psychiatric system, is so often that they could address things differently than looking for an answer in biology (this may even then involve being so terrified of the withdrawal symptoms, or angered at the psychiatric system, which also causes stress and which also compromises the body’s way of dealing with withdrawal symptoms and other problems, that too much focus on that physical aspect causes stress which causes physical problems). So, yes, these people need support because of what they’ve been through.
Then there are people that really had emotional problems to begin with (and if you’re human you do)….
If people really ended up labeled, and/or drugged for any sensible reason (which makes no sense since the drugs don’t help, and the labels…these aren’t even consistent labels, no objectivity) then it would be those forcing the drugs on people that would be labeled and drugged (it’s much more consistent to look at them; their symptoms are easily identifiable)….except um…. if you drug them up (or drug them up even more than they willingly are) you would have some REALLY BIG problems given the effects of such drugs.
So really, it’s the people that do end up being labeled and/or drugged that probably have the ability to transcend the whole fallacy (something which is made out to be a problem, then). Maybe the only problem is that they actually CAN let go of their anger, of the stress that keeps the system running. So yes, they are going to experience in life, and feel all sorts of things others wouldn’t, couldn’t, won’t, would suppress; but that’s because they can let go of it and re-find themselves rather than being the ones without the problems.
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\\…to speak of “no good reason” is a little naive…///
Marian,
I don’t think Altostrata was being naive; I think maybe you misunderstood what Altostrata was saying – because, otherwise, I can’t understand that objection of yours (which I’ve offered above).
Altostatra said, “people often end up medicated to the gills for no good reason.”
Saying so is not being naive, at all.
In fact, when I read that line, I was a little confused by it, as I thought to myself: ‘I hope Altostrata doesn’t imagine that there could be a *good* reason for medicating someone to the gills!’
What good reason could there possibly be for having anyone “meditated to the gills”?!?!?!!
‘Medicated to the gills’ implies that a person is being heaped *full* of ‘medications’ – at high doses – and/or is being prescribed numerous kinds of ‘medications’ simultaneously (“poly-pharmacy”) – etc..
In my humble opinion, there is *never* a *good* reason for that kind of prescribing – only bad reasons.
Respectfully,
~Jonah
P.S. – Marian, I agree with you when you say, “the focus should be, as it is in Daniel’s post, on both [tapering and support] equally,” and, “people hardly ever end up labeled, and/ or drugged for no reason at all.”
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P.S. – And, yes, *many* people wind up medicated to the gills – especially, here in the U.S.! I.e., Psychiatry here, especially, tends to be about escalation of ‘meds’ use… as a result of the docs’ attempts to ‘off-set’ (or, compensate) for so-called “side-effects” of a “patient’s” current ‘meds’ regimen.
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Sorry I tried to post so that it would appear sequentially after the prior post, but I went up in the thread by mistake. That post is now above rather than below.
No comment on it’s afterlife….
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Nijinsky, I agree that it is often the people who are labeled and drugged who really are one step ahead of those who label and drug them, since it is my firm belief that, in order to bring change about, it needs some sort of crisis, suffering. If everything is just beer and skittles, then why change anything? However, when you say that people who “were prescribed anti-depressants; just because they encountered what anyone else would in life” you ignore the fact that people are individuals and have individually varying reactions to what anyone encounters in life. Actually, yours is the “argument” professionals often employ: “Trauma?! Oh, shut up. What has happened to you has happened to millions of others, and they didn’t go insane!” People have to get up from the couch, leave the house, and go somewhere to get a prescription for the drugs. At least they have to take and swallow the pills when they’re offered to them. Nobody does this completely without any reason. Or everybody would be on these drugs by now. And I can only say that it is a very, very sad thing to witness people end up in the system again and again, just because they think there’s nothing else in their life they would have to deal with than drug withdrawal.
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Jonah, of course there’s never any good reason to drug anybody up on psych drugs, huge or small amount. Psych drugs, just like recreational drugs, do one thing only, they help repression and denial, neither of which has ever got humanity anywhere. So, I wholeheartedly agree that there is no good reason for these drugs to exist at all (I’m a radical in this), and I’m certainly not saying that there could be any. What I’m saying is that nobody whose life actually is all beer and skittles, who has no difficulties dealing with life ever, ends up psychiatrized.
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Well this goes both ways. What I was saying was that… well I’m kind of lost….
The real trauma is the drugs themselves in many ways. And if the drug companies had their way everyone would be on them when they have any “difficulty,” even social anxiety. This is why I mentioned that people encountered something in life that anyone could, and end up on these “medications”. I certainly wasn’t arguing that “millions of people haven’t gone insane so you won’t either,” to belittle anyone’s experience. I was pointing out that the doctors prescribe these “medications” because they act like millions of people have not gone insane thanks to these medications. Like they are some magic balancing agent for your emotions. And that’s not the case at all.
Saying that “Let’s face it, shall we: people hardly ever end up labeled, and/ or drugged for no reason at all.” This is like saying that in a war zone no one is just an innocent bystander. People are told to take anti-depressants for who knows what, just because they are supposed to be some sort of magic. And the people who haven’t invested in the whole fear whole of needing them or not needing them, they seem to not have that much difficulty getting off of them. I think fear is involved. This might point out that you can let go of trauma rather than trying to fix it by adding to it.
And I’m not saying anyone hasn’t gone through anything, or doesn’t have difficulty.
Drugs are treating trauma with trauma, there was no belittling anyone’s trauma.
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Nijinsky — February 28, 9:18 pm — “any ‘difficulty,’ even social anxiety”. That’s my point. Nobody indeed is innocent. We all run into difficulties, even social anxiety, every now and then. It’s called “life”, and it needs our attention. It needs that we learn how to navigate it in the most constructive way possible. What the difficulties we run into tell us is that we haven’t yet learnt everything, that there’s still room for improvement, learning, growth.
There are two ways for us to act on the difficulties we inevitably run into, each and every one of us: we can try to ignore them, deny them, in case the difficulties can’t be entirely ignored/denied, resort to scapegoating: “None of all this is my responsibility! It’s everybody/everything else’s (for instance, but not only; the possibilities are innumerable; the system’s, the drugs’, the withdrawal’s,… )!” Or we can embrace them as the unique opportunity for us to take responsibility and learn they are.
Unfortunately, we have created a culture of denial and scapegoating, a culture of “innocent” narcissists who, whatever the difficulties they run into on their path, are not to be held responsible. It’s the system, the pharmaceutical industry, the drugs… In other cases it’s one’s genes, one’s “mental illness” that you have no agency over (that for instance left the refrigerator door open; it’s truly amazing what “mental illness” is capable of!), in other cases again it’s the trauma that, and this is the decisive part, left you incapable of taking any responsibility for the rest of your life; the possibilities to maintain denial and scapegoating are in fact infinite. But what denial and scapegoating creates is more and more, not less, difficulties.
What are we going to do about it? Are we going to remain sitting motionless, like a helpless child — and children are the only people who are innocent — and simply extend the denial and scapegoating to whatever new difficulties we run into? And this indeed is what the institution of psychiatry was created to do: to put helpless children in grown-up bodies, the result of our culture’s denial and scapegoating, for whom the denial and scapegoating no longer works out of sight. Or are we finally going to listen to what our increasing difficulties have been trying to tell us for a long, long time, are we finally going to grow up and take responsibility?
I know that this is a messy, and very inconvenient subject, and I’m not blaming anybody. I’ve just seen, and myself, having been and sometimes still being a helpless child in a grown-up body, experienced — believe me, each time I choose this “solution” difficulties only increase, it doesn’t make them go away — too much harm done by denial and scapegoating. It’s also a very complex subject, and maybe too complex for a comment thread here. Nevertheless, I think it’s important especially in context with the subject of psych drug withdrawal.
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Hi, Marian,
I think you have isolated the conceptual problem with so much of what we read these days about getting off meds. I do think that we were way overdue to hear the good news, that people don’t necessarily need psych meds for life, that many people are on too high doses and too many drugs. Putting aside the obvious cases of e.g. nurse practitioners and inexperienced doctors diagnosing wrongly, and then making it worse with polypharmacy, there are still people who got the diagnosis because they exhibit all the mental and physical characteristics that can be lined up with a particular DSM category. Take away the drugs and their symptoms come back, even if they have tapered slowly. Can you guess I’m speaking from my own experience with my son? There is a some kind of problem absent the drugs, and maybe he just hasn’t eliminated trauma or matured enough, or else there is something physical that hasn’t been picked up on. There’s a reason he got the label. The label is erroneous, it’s a junk label, but it does say something about his health that hasn’t been fixed by getting off the meds.
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Marian I agree with all of that.
I hope I’m still responding to what’s actually being said, as the amount of responses is starting to add up to Leporello’s Catalogue aria in Don Giovanni.
That’s so true that we have the choice to see that we can deal with what’s going on ourselves, see it as a challenge; or we can do the things that don’t work (blame it on our brains, blame it on others etc..). A Course in Miracles actually says that our “enemies” are our saviors because they facilitate the challenge of how we respond. When we hate them and respond with the same projecting problems outside of ourselves that they are doing, the same lack of love for ourselves and the rest of creation, then this doesn’t help. ACIM uses a word called love saying it has no opposite, and this is the choice we should make. But this is an impossible word to use given the context, because just about everyone will get it wrong, thinking they know what it is. It really is without judgment, unconditional. Without any idea of loss. And also that everything is perfect, that you’re not loving a person to change anything. You might change how you look at what they are doing, but you’re not loving them in order to change them into something else. That way you also let go of the erroneous idea that you need to change them using fear, guilt, penal coercion etc..
I agree with everything you have said, but even talking about trauma can be difficult in this day and age; because people so often start blaming their trauma, and then play victim needing help with it; this becomes the same as blaming it on someone else or the brain. Even when “unmedicated.” I’ve seen people basically make up ego states, and focus on trauma they don’t let go of in order to believe they have found the evil, or the magic answer; and because they know blah blah blah (the answer) they’re perfect. But they haven’t let go of their trauma, only drafted it. And they can go around trying to get everyone else to find their “inner child”, to make up the same blah blah blah and dance around like happy inductees.
It’s unfortunate because the method of actually learning to witness that part of yourself that tries to invest in blaming it on others when to find peace you would need to let go of that (that’s how you learn): this is really a good method. You experience what doesn’t work, that’s how you build up reflexes. And then you don’t judge others either, because you’re learning rather than judging yourself. When you are doing what works this shines because it works; and certainly is there to show what does work no matter how many mistakes people make instead. It sets example rather than promotes judgment.
I’m just concerned how much people invest in suffering, in trauma and in stress. People believe too much that they have to suffer (no pain no gain), they have to experience trauma in order to experience depth, if they aren’t stressed out then they won’t do anything. I don’t believe all of this. When you invest in all those things, you’re investing in what is the engine of what caused what you’re trying to get away from via the stress, trauma etc… In reality you can simply step away from pain, suffering, trauma etc.. But then guilt gets involved and people think they aren’t doing anything, and you get the same pattern all over again. It’s “those people” not doing anything that’s the problem. “They” have to be controlled, be intimidated etc.. This “those people” then ends up being the marginalized part of society; the part that’s supposed to be dysfunctional but in reality might be much more functional (see dadaism). And then “those people” are supposed to pop pills because otherwise they might see, might have the mental clarity to see that it’s all going round in circles and doesn’t work. So, they are all supposed to be scared of their “trauma,” the sadness that they aren’t part of the grind or whatever.
But there’s a big difference between experiencing your trauma to understand the whole cycle of trauma (and let go of believing you need to invest in it), and using it as a means to add up blah blah blah about what you know about yourself so that you’re all fixed up. That you have to right to appropriate make up artistry, the right to be an inductee to cover everything up again.
When I found that the person who was trying to convince me and intimidate me to stifle my voice never had a voice, didn’t know what it was or how to use it; then I stopped trying to change him and simply used my voice; because this shows it exists…
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Nijinsky, March 1, 6:53, I totally agree. As long as people are stuck in their trauma and suffering, and won’t/can’t let go of it, no real growth, no true insight will happen. We don’t need trauma and suffering to grow and gain insight. All we need is to be challenged. Trauma is kind of a meta challenge: you face a challenge, and are told “You can’t!”, or even, with Laing, “Don’t!” That’s what gets people stuck in suffering.
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I was under the care of a now world-famous psychiatrist in 1982 when fortunately I learned about orthomolecular therapy and was able to obtain it for myself. The psychiatrist was furious about this, but when my symptoms subsided, he agreed to let me take a “holiday” from the Haldol he had prescribed for me.
Several times previously I had tried unsuccessfully to withdraw from the Haldol. My “symptoms” always seemed to return with a vengeance, and soon the psychiatrist would say “See, this is what happens when you don’t take your medication.” I’m sure he thought withdrawal would produce the same results again and I could then be convinced to accept being “medicated” for life.
That last time, however, I had two new factors in may favor. First, I had the biochemical support of the orthomolecuar program and diet, and second, I had learned about drug titration.
When I had tried to withdraw from Haldol previously, I had reduced the dosage to one 2mg tablet (the smallest) per day and then just stopped. Now I cut the tablet in two, taking one half per day. After a few days, I started grinding the pill to a powder and taking only a few grains of the powder on a moist finger tip each day, and then just a few grains every other day, and then every third day.
After I stopped taking any of the Haldol I did not sleep for two weeks. I went to bed at my usual time and stayed quiet until morning, meditating and listening to a classical music station with headphones. I felt good, I knew I was closing the door on a very unpleasant chapter in my life, and finally my normal sleep cycle returned.
The famous psychiatrist who was furious about my experiment with orthomolecular therapy? Now he had something else to be angry about. When I told him how I had ground up the the pills and titrated the dose he started to shout about how that was not how he had instructed me to discontinue the Haldol.
After I was both symptom and medication-free for about two months, he stated that I had had a “spontaneous remission” and refused to make any more appointments with me.
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Perhaps we’ve “met” before? Are you the person who found Dr. Hoffer’s books while browsing a garage sale? If so, your story gave me great hope at a time when I needed it.
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Rossa,
I found Linus Pauling’s 1986 book “How to Live Longer and Feel Better” at a garage sale in 1994. In the preface, he describes a meeting he had with a young woman in 1974. The woman thanked him profusely because she had been hospitalized with “chronic schizophrenia” for a number of years in the 1960s when she came across some of Dr. Pauling’s articles. She put his suggestions (he called his approach Orthomolecular Therapy) into practice and soon had a full remission of all symptoms and went on to live an enjoyable and productive life.
I remember thinking, “Hell, it was in 1974 that I was first diagnosed and “treated” for schizophrenia and it wasn’t until 1982 that I learned about orthomolecular therapy and was able to recover and escape the system. Now it is twenty years later and the danger of entrapment is even greater, and escape far more difficult.”
Pauling was of course an associate of Dr. Abram Hoffer. Perhaps you saw my account of this garage sale discovery somewhere. If so, I’m glad it encouraged you to search out the truth. Today, information travels at a much faster rate, but so does disinformation, and the needless suffering continues.
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I believe we were in the same schizophenia chat group. What discouraged me about the group was how many drugs the individual members were taking (and at high doses). It was an eye-opener.
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Ran out of Reply buttons.
In response to Daniel Mackler on February 28, 2013 at 7:02 pm:
Daniel, I’m glad you’re thinking about this subject. Overmedication is so prevalent, affecting tens of millions, the problem of getting people off drugs without further damage to their nervous systems is huge.
But we have to get beyond the hypothetical. (There’s a great deal of the hypothetical on MIA.) What can be done to help the many people who need this assistance now?
First, I contend conceptualizing the solution as inpatient programs is going in the wrong direction. By its nature, gradual tapering takes too long to be an inpatient process.
Funding such inpatient facilities all over the world would be an impossibility. The services need to be decentralized.
The best way to get people off drugs is with localized resources: Educated doctors along with psychotherapeutic support.
You need prescribers to write the prescriptions for tapering. These prescribers should coordinate with therapists supporting the person’s re-entry into non-medicated life.
Educated prescribers are the scarcest resource in this scheme. How can we find them? If we have to train them, how can we reach them and train them?
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good points. i like them. i also agree it’s good to jump beyond the hypothetical and theoretical. for me, now, though, in my life…i want to make sure i have my ducks lined up, which is why i put out this piece. also, i don’t have the energy to start a new program…….wish i did, but i don’t. i burned out on being a therapist…that and i was finding pleasure in doing other things (films, visiting other programs, etc.). actually, tomorrow will be three years since i closed my practice.
but i think it’s great to discuss this — especially with people like you who have clearly thought about it a lot and have a lot of experience. and by no means would i say my experience is the b-all and end-all. that’s why i looked forward to discussions about this piece…though i admit, i was nervous to put the piece up because this stuff can REALLY anger people, and i felt that no matter what i said i would step on someone’s toes, which i didn’t want to do.
thanks for what you’ve shared, and for the links.
daniel
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I’m quite tired myself. When I burn out, I hope there’s someone to take over for me, because I don’t see psychiatrists suddenly seeing the light.
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In response to Nijinsky’s post on February 28, 2013 at 8:41 pm:
Yes, some people can fairly quickly go off drugs with few problems, but others have massive problems. It’s the luck of the draw. It can’t be predicted.
It’s likely you heard from the lucky ones because the unlucky ones….well, they might not be getting out much….
Withdrawal syndrome is not a matter of psychological dependency, it’s a neurophysiological vulnerability. Implying withdrawal is “all in your mind” is as cruel as dismissing any complaint of an adverse effect from a psychiatric drug.
Tapering is a way to reduce the risk of withdrawal syndrome. Cold turkey is a way to dare the fates. Lose the bet and you can be suffering badly for a very, very long time.
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Withdrawal symptoms are both psychological and neurological. When someone can calm themselves, can let to of fear, it’s widely known that this helps the body deal with whatever it needs to deal with. I never was implying that it’s “all in your mind in order to dismiss a complaint of an adverse effect. What I said is that letting go of fear (which gets one away from the flight fight response) that this can help. This also helps with emotional issues….. This might actually help people who are having difficulty withdrawing. I also never said anything against Tapering or said anyone should go cold Turkey.
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Excuse me, but when I just mention that it helps to let go of fear, that quaking more and more fear of what these drugs can do physiologically, that this might actually promote the very fear based (fight or flight) response that shuts down the immune system, that causes stress, that prevent the body from dealing with withdrawal symptoms, or with emotional trauma.
I’m getting these responses from both sides as if I’m dismissing either emotional trauma or physical trauma from the drugs. And I’m doing neither. I’m not saying that the drugs aren’t highly addictive and difficult to get off of (I’m certainly not promoting them either); and I’m also not dismissing emotional trauma.
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Peace already…. Someone mentioned that listening to classical music helped them.
I have this whole youtube site with music was there for me all the years that I supposedly “suffered” with schizophrenia. And music has always been there for people’s emotional healing, before anyone even invented, drugs, psychology, psychiatry, psychotherapy etc…..
The music is the real part, not the “suffering…..”
http://www.youtube.com/oelte
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\\…I think it’s great when programs offer alternative activities for people coming off neuroleptics, such as (but not limited to) yoga, meditation, exercise, dance, acupuncture, massage, volunteering, discussion groups, gardening, writing groups, journaling groups, 12-step groups, hiking groups, adventure groups, nature groups… The list can go on and on…//
I’ve never been involved with any ‘program’ that’s been officially designed, specifically for coming off neuroleptics – but was once on them – and, after a couple of failed attempts, did develop my own ‘program’ for successfully coming off of them. (I mean: it worked for me.) It involved a number of the “alternative activities” which Daniel mentions.
In this comment, I’m focusing on 12-step groups.
But first, I offer a very quick history…
I was introduced to a variety of psych ‘meds’ (beginning with neuroleptics) – forcibly – at age 21.5 – and stayed on a number of them for 2 yrs, at which point I shunned them… and was, very soon thereafter, “hospitalized” and forced back onto them; once out of the so-called “hospital,” I quickly went off of them again and was soon forced back on to them, again; thereafter, I stayed on them for nearly another 1.5 years. By the end, of that time, I was taking *every* class of psych ‘med’; such is to say, I was on an ever-growing number of ‘meds’ – for 3.5 yrs – at which point I *successfully* took myself off *all* of them.
I did so rather quickly (tapered for maybe a couple of weeks).
I do NOT recommend that, to anyone.
Simply, I knew nothing about tapering.
So, at times, the withdrawal symptoms were all but totally overwhelming; however, going back onto ‘meds’ was not an option, in my mind.
I got over the withdrawal symptoms gradually – and credit my success largely to a then-new Buddhist practice and to the subsequent 1-full-year of attending *many* Twelve Step meetings.
The Buddhist practice was particularly good for me; it was helpful in many ways – but, especially, in that: my family approved of it and saw it as clearly helpful to me.
I have been off psych ‘meds’ (*very* gratefully – and, *very* gratefully, free of psychiatry) for over 23 years.
So…
I was helped by various kinds of 12-Step programs…
Mainly, by CODA (Codependents Anonymous); in that program’s ‘First Step,’ one admits one is, “Powerless over others…”
The average person in our society is *not* going to want to confess, “I was powerless over others…”
So, understandably, that is not a program for everyone.
But, I deeply believe this could help many – to establish support, when going through withdrawals…
IATROGENIC ‘DISORDERS’ ANONYMOUS – I.D.A (a modified 12-Step program)
…
I.D.A. Twelve Steps
1. Admitted we were powerless over an iatrogenic ‘disorder’ – that our lives had become unmanageable
2. Came to believe that a Loving (wise and compassionate) Power could restore us to sanity
3. Made a decision to turn our will and our lives over to the care of that Loving Higher Power
4. Made a searching and fearless moral inventory of ourselves
5. Admitted to our Loving Higher Power, to ourselves, and to another human being, the exact nature of our wrongs
6. Were entirely ready to have our Loving Higher Power remove all these defects of character
7. Humbly asked our Loving Higher Power to remove our shortcomings
8. Made a list of persons we had harmed, and became willing to make amends to them all
9. Made direct amends to such people, except when to do so would injure them or others
10. Continued to take personal inventory and when we were wrong promptly admitted it
11. Sought through prayer and meditation to improve our conscious contact with our Loving (wise and compassionate) Higher Power, praying only for knowledge of that Higher Power’s will for us and the power to carry that out
12. Having had a spiritual awakening as the result of these steps, we tried to carry this message to others affected by iatrogenic ‘disorders’, and to practice these principles in all our affairs.
…………………………………………
12 Principles Behind The Twelve Steps (applicable to all 12-Step programs):
Step One: HONESTY
Step Two: HOPE
Step Three: FAITH
Step Four: COURAGE
Step Five: INTEGRITY
Step Six: WILLINGNESS
Step Seven: HUMILITY
Step Eight: BROTHERLY AND SISTERLY LOVE
Step Nine: DISCIPLINE
Step Ten: PERSERVERANCE
Step Eleven: AWARENESS
Step Twelve: SERVICE
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Via http://dictionary.reference.com/browse/iatrogenic
(based on the Random House Dictionary):
i·at·ro·gen·ic
adjective
(of a medical disorder) caused by the diagnosis, manner, or treatment of a physician.
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If there ever is such a thing as an inpatient withdrawal facility permitting tapering as long as it takes, I’d like to see it modeled on a health spa, complete with healthy spa food.
As for the 12 steps, I don’t see why people who have suffered iatrogenic harm have to in any way blame themselves, try to purify themselves of evil, or focus on their shortcomings.
What I’ve seen is that some people suffering in withdrawal try to figure out why the universe is punishing them — this must be an atavistic belief system in humans — and feel terribly guilty for every little error they’ve ever committed.
(There also seems to be part of withdrawal syndrome, there’s something going on neurologically that unearths every painful memory you’ve ever had.)
What I tell them in these situations is to forgive yourself and focus on taking care of yourself. Being pushed to this out of necessity often is a revelation and a spur to spiritual growth. Distressed people often seem to have self-neglect at the root of their troubles, and cherishing their own well-being opens them up.
There is a punitive or moralistic aspect to 12-step programs and other addiction interventions that I do not believe is at all appropriate for people having difficulty in going off psychiatric drugs.
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Altostrata,
You raise some really interesting points (interesting and important, I feel); but, please, realize: it is *you* who brings this word, “evil” into the conversation – when you say the following,
\\…As for the 12 steps, I don’t see why people who have suffered iatrogenic harm have to in any way blame themselves, try to purify themselves of evil, or focus on their shortcomings…//
You interjected that word (“evil”) into the conversation; I don’t know why you did; for, nowhere, in the version of the 12 Steps, that I offered – nor in *any* version of the 12 Steps, that I’ve ever seen – is there *any* mention of “evil”.
But, yes, there’s mention of, “our shortcomings”; Step Seven (as you see, above) reads: “Humbly asked our Loving Higher Power to remove our shortcomings”
You say, “Distressed people often seem to have self-neglect at the root of their troubles, and cherishing their own well-being opens them up.”
If what you’re saying there is true (and, I have no reason to argue that it’s not true), then maybe we can reasonably say that, generally speaking: the worst shortcomings of distressed people are habits of self-neglect.
You write to Daniel (on February 28, 2013 at 9:22 pm), explaining, “I’m quite tired myself. When I burn out, I hope there’s someone to take over for me, because I don’t see psychiatrists suddenly seeing the light.”
So, perhaps, you are saying you are becoming *distressed* by your work?
If that’s true, then maybe, in the course of working, you have developed patterns of self-neglect, which require addressing?
As your work is all about helping others, who are more or less distressed, I recommend CODA (Codependents Anonymous); for, perhaps (just maybe), you are taking on others’ emotional burdens, in ways that don’t serve you.
But, CODA is just a suggestion. Truly.
Meanwhile, I point out, simply: People who feel their lives becoming somehow ‘unmanageable’ are the best candidates for 12-Step programs; and, in the course of working the first three steps, one needn’t worry about ‘shortcomings’; one is ‘just’ admitting ones own life has become, in ways, unmanageable; that’s Step 1. Then, (in Steps 2 and 3) one is developing faith in a Loving Higher Power.
You write,
\\…There is a punitive or moralistic aspect to 12-step programs and other addiction interventions that I do not believe is at all appropriate for people having difficulty in going off psychiatric drugs…//
I don’t see *anything* punitive in 12-step programs (nothing whatsoever).
But, there is an amount of self-discipline, that’s called for, in working the Steps. Anyone who chooses to work the Steps simply *must* work them one-at-a-time, sequentially – viewing each step as integral, to the *whole* 12-Step process.
I think, in your never having worked the steps, you are failing to realize (experientially) the *gifts of faith* (in a Loving Higher Power) that could come from investing yourself deeply in the first three steps; not realizing the boon of such gifts, you’ll not fathom the benefits of steps 4 through 10.
All the steps are complimentary – and must come one at a time, in numerical sequence.
🙂 Consider that a ‘moral’ edict, in 12-step programs! [a little joke there]
About your reference to a “moralistic aspect to 12-step programs” and how you, “do not believe is at all appropriate for people having difficulty in going off psychiatric drugs…”
Frankly, there *is* a ‘moral’ aspect to 12-step programs. It is embodied in Steps 4 through 10, especially – and in the “12 Principles” (listed above). To me, it seems that *anyone* could benefit greatly by embodying such principles.
(Should I consider people who are “having difficulty going off psychiatric drugs” to be paragons of virtue? Are they not, quite possibly, in most instances, rather isolated – and requiring the same benefits that are received by people, in 12-Step programs of so many kinds, likewise, overcoming difficult habits?)
You say,
\\…What I’ve seen is that some people suffering in withdrawal try to figure out why the universe is punishing them — this must be an atavistic belief system in humans — and feel terribly guilty for every little error they’ve ever committed…//
And, you add, parenthetically,
\\…(There also seems to be part of withdrawal syndrome, there’s something going on neurologically that unearths every painful memory you’ve ever had.)…//
This is where I take strong exception, with your described methods, of helping: saying, “there’s something going on neurologically that unearths every painful memory you’ve ever had” sounds (to me) like a playbook right out of the average Pharma-psychiatrist’s tool-kit…
(Note: I know you do great good for many people; but, I would *never* speak to anyone that way; indeed, I’d want to get the hell *away* from *anyone* who was telling me such a thing.)
In my view, quite often, when painful memories come up, it’s because they require addressing (maybe not at that exact moment, but soon). The ‘meds’ tend to be utilized (more or less unconsciously) as a means of suppressing negative memories; so, of course, coming off the meds, such memories *shall* arise; people need an outlet – a safe, non-judgmental place – to express such memories. Very often, those memories are expressed in 12-Step meetings. There is no cross-talk allowed; and, each person’s ‘sharing’ is kept in the first-person (i.e., people are asked to speak of their own lives), so that, usually, people will *not* refer directly to the content of a previous speaker’s ‘sharing’. And, the meetings are anonymous; everyone is asked to keep whatever is shared *inside* the meeting (i.e., confidentiality is fully expected).
Of course, no one should go naively into a meeting and divulge their deepest secrets (unless, perhaps, it is a *closed* meeting, where everyone has come to well know and trust each other).
Finally, there are ‘sponsors’ in 12-step programs – mentors. One might share one’s ‘secret’ past with ‘only’ one person in a meeting; that might be being his/her sponsor.
You explain,
\\…What I tell them in these situations is to forgive yourself and focus on taking care of yourself. Being pushed to this out of necessity often is a revelation and a spur to spiritual growth…//
That may work, sometimes; and, when it does, wonderful; but, most people have ‘deep secrets’ that trouble them; they need to be fully heard – and fully accepted.
Respectfully,
~Jonah
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P.S. — Altostrata, note how I say (above): “I think, in your never having worked the steps, you are failing to realize (experientially) the *gifts of faith* (in a Loving Higher Power) that could come from investing yourself deeply in the first three steps…”
Please, do *not* misread me; understand, I am *not* suggesting that you have no sense of connection, to a ‘Loving Higher Power’; I am suggesting, that you may not realize how the 12-step programs do help people, to establish this connection – and what a great boon can, thus, be had by many who work the steps.
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Jonah, some people do find benefit in 12-step programs and some do not. The AA approach is quite controversial.
Your own experience is entirely valid but may not be generalizable.
I have experience with this population, many hundreds of people, and I have put forth my opinions above based on that experience.
From what I’ve seen, pondering and rectifying one’s faults in the 12-step manner would only to the stress of withdrawal syndrome.
Oh, yes, withdrawal does have adverse neurological effects. If you haven’t experienced the harsh emotions emanating from a nervous system destabilized by withdrawal, you are fortunate.
If you’ve changed your mind and you’d like to provide support to people suffering from withdrawal syndrome and thus gain insight into what others are going through, please let me know.
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Altostrata,
First of all, each type of 12-Step group is different; I am NOT recommending AA.
(Many people who struggle with alcohol can offer all kinds of reasons to avoid AA; in many instances, they may be right to offer warnings; yet, others, swear AA saved their lives. Frankly, I can’t be the one to judge – as that wasn’t my issue.)
You say, “From what I’ve seen, pondering and rectifying one’s faults in the 12-step manner would only [add] to the stress of withdrawal syndrome.”
As you say that, I think to myself: ‘Maybe I did not articulate myself clearly.’
So, now I add this: No one in a 12-step program is expected to contemplate his/her own shortcomings before developing a strong sense of connection to a Loving Higher Power.
Plain and simple…
Developing that strong connection to a Loving Higher Power takes time.
(That’s the first three Steps.)
(As a very, very *rough* average, I’ll say that’s 3 to 6 month’s time – but could be longer. It could be a year’s time, because many focus on meetings and don’t take the steps all that seriously – but do eventually get into working them.)
The main thing is this: With that strong sense of connection, to a Loving Higher Power, one is absolutely *not* going to beat oneself up, while contemplating his/her own shortcomings.
Instead, one is going to wind up positively developing ones own character – learning how to live in a more pro-active way.
But, of course, 12-Step programs are not for everyone.
About your saying, “Oh, yes, withdrawal does have adverse neurological effects. If you haven’t experienced the harsh emotions emanating from a nervous system destabilized by withdrawal, you are fortunate”:
Altostrata, of course, withdrawal has neurological effects. Of course, it does. (Sheesh!) But, saying that is very, very, very different from saying that painful memories should be ignored (which is what I get out of the comment you left me, saying, “part of withdrawal syndrome, there’s something going on neurologically that unearths every painful memory you’ve ever had” and, “What I tell them in these situations is to forgive yourself and focus on taking care of yourself.”)
Marian emphasized (and I agree), people coming off ‘meds’ need support – not just focus on tapering.
And, like Nijinsky emphasized, people coming off meds benefit when they learn to, let go of fear.
Developing a strong sense of connection, to a Loving (wise and compassionate) Higher Power, one is (to a large extent, inevitably) letting go of fear.
In my recollection, of withdrawal effects, fear was the main problem to be overcome.
As I recall, the #1 problem, to contend with, when in withdrawals, is quite as Nijinsky describes (on February 28, 2013 at 9:37 pm): there is a, “fear based (fight or flight) response that shuts down the immune system, that causes stress, that [prevents] the body from dealing with withdrawal symptoms, or with emotional trauma.”
Certainly, one should not be troubling oneself, trying to figure out all ones own shortcomings, at that point.
But, once one has developed a strong sense of connection to a Loving Higher Power, one *can* afford to take stock, seek to make amends (in well-reasoned ways) – because one won’t be troubling oneself, at that point. One will be feeling hopeful!
And, please note: hope comes in many forms – including false hope.
I have no interest in encouraging false hope. E.g., people come and go, from our lives; no one can reasonably *expect* to re-connect with those who’ve gone their own way.
But, there is the possibility of making amends, in the course of working 12-Step programs.
And, especially because we are talking about *neuroleptic* withdrawal (that is the topic of Daniel’s post), it should be obvious: many of these people caused others distress, at times.
Eventually, it’s good to do what one can do (i.e., within reason) – to make amends – and *not* for ‘moralistic’ reasons… but because one tends to feels better about oneself, feels more complete, when developing a habit of continually striving to clear up misunderstandings from the past – at least, in ones own way of thinking about the past.
On that note, about your saying, “If you’ve changed your mind and you’d like to provide support to people suffering from withdrawal syndrome and thus gain insight into what others are going through, please let me know,” I must say: I do appreciate the invitation – and the past invites you’ve offered.
But, your site is all about tapering; and, I know *nothing* about tapering.
So, all I can offer is the kind of thing I’m offering here; and, it seems to me, that you are really *not* into what I’m offering. (If I’m wrong about that, please let me know.)
Respectfully,
~Jonah
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Jonah, it appears we are in the realm of the hypothetical again.
It’s a lot easier being an armchair philosopher speculating about what might be good for other people than it is to connect with them one-to-one and try to help them.
There are many people suffering from post-discontinuation withdrawal syndrome on my site. If you think it would help them, you are invited to counsel them in your 12-step approach and see what kind of reception you get.
Otherwise, no, I’m not going to recommend it to the people who come to my site. It doesn’t seem appropriate to me for the purpose of supporting recovery from psychiatric drug withdrawal.
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“It doesn’t seem appropriate to me for the purpose of supporting recovery from psychiatric drug withdrawal.”
Altostrata,
You begin your comment (and end your preceding comment) by *inviting* me to do that which you’re ultimately calling, “inappropriate.”
I tend to read “inappropriate” as a massive negative.
Meanwhile, I’d like to help in any way that is truly reasonable.
So, I’m feeling double-binded.
Respectfully,
~Jonah
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P.S. – Altostrata, maybe I was misreading your last comment?
I’m may have been misreading you, at last – because, rereading, now, it seems to me, that: maybe you’re conveying relative openness to a 12-Step approach for those who are no longer on ‘meds’ – and, nonetheless, opposing it for those in the midst of tapering???
You can let me know if that’s your way of thinking, at this point…
But, please realize: If that is your way of thinking, then, really, I don’t know what I think about any of this – as I’m really *not* at all inclined to want to coddle people; I’d much rather just be entirely myself and allow others to take the risk of looking directly at whatever’s coming up for them; adults should do as they please, as long as they’re not hurting anyone; treating adults as though they were children is not my cup of tea, at all.
I say live and let live…
And, on that note, I’m out for the rest of the night…
🙂
Respectfully,
~Jonah
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A correspondent from a benzo withdrawal group on Facebook, a person “who survived benzo withdrawal and 6 years later, began to feel better,” asked me to post the following.
This person wants to caution against regular use of benzos to counter withdrawal symptoms; benzos themselves incur physical dependency and can be difficult to taper off of.
“I am beyond horrified that [Daniel Mackler] would mention taking benzos to “help” [withdrawal], for obvious reasons. While in post-benzo withdrawal myself for a few years, I was lucky if I could get out of bed.
“I’m concerned for those reading his article that might think 1) taking benzos is ok, and 2) that they will feel more despair, shame, and guilt than they already do in drug w/d if they can’t “get moving” any faster than they are able.”
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“(S)hort-term or as-needed” it reads to me, not “on a regular basis”. There’s a true benzo panic going on here in Denmark, and I imagine elsewhere too. The result is that people are put on neuroleptics, preferably Seroquel, for things like sleeping problems. I have to say, I don’t know which I think is worse, a drug with a high addiction risk, or a drug that very likely may make you heavily overweight in no time, diabetic, suffering from parkinsonism, and will cause your brain to shrink quite rapidly.
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hi altostrata and marian,
well, i’ve had various people tell me that short-term benzo use was helpful to them in getting off neuroleptics, and that they didn’t get hooked. i’ve also known a lot of people hooked on benzos — absolutely horrible. so basically my thought is that if the benzos are not used short-term or very scantily then they’re too risky. i’m curious what others think about this. perhaps there are a lot more people out there who feel that any benzo use (even very short-term) is just too risky.
all the best,
daniel
p.s. well, again, i hope people don’t take me as the b-all and end-all in neuroleptic withdrawal, because i’m not that! i just have some ideas based on my own experiences, and i wanted to take the risk of putting out those ideas — and to hear others’ feedback. i just think there’s not enough out there on this subject, so that anything that’s fairly well thought-out, however imperfect, would add something…because so much of what is actually being done in practice now is horrible!
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Daniel, “horrible” is an understatement!
Please note that I posted the above on behalf of a correspondent. Personally, I don’t condemn occasional benzo use to deal with withdrawal symptoms post-discontinuation.
Tapering should incur almost no withdrawal symptoms. Withdrawal insomnia indicates you’re tapering too fast.
Rather than relying on benzos during a taper, if withdrawal symptoms occur, the safer thing to to is to slow the taper — hold on the taper or updose slightly, stabilize, and then reduce by smaller amounts.
If withdrawal symptoms start, they’re probably going to continue through further reductions. Here’s where there’s a risk of depending on a benzo: You’ll be tempted to take them frequently.
From my perspective, the danger of occasional benzos to deal with post-discontinuation withdrawal syndrome is that usually the person’s nervous system is sensitized to neuroactive substances (including supplements, alcohol, and marijuana) by withdrawal. Benzos can have a paradoxical effect and if this happens, it can make withdrawal syndrome worse.
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I refer many of my clients to this site for resources. I am a Clinical Hypnotherapist who has been working for years with psychiatric patients…many of them ‘downloaded’ to me after the local institutions ‘maxed out’ their ‘treatments’. Many clients are/were on multiple psychoactive drugs at once and often hooked on alcohol and cigarettes as well. I agree with your list completely except for the addition of a psychiatrist to the mix. If they are like Dr. Peter Breggin who uses no drugs whatever and relies on empathic therapy, fine, but otherwise psychiatric dogma and attitudes are entirely contra-indicated for clients who need empowerment. Psychiatrists do not concern themselves with empathy…they are trained to diagnose and prescribe.
I can say that I have worked with a large number of people who managed to wean themselves off their medications safely enough, but who found the underlying emotional isues were still there. I offer the final piece of the recovery puzzle…regression hypnotherapy to get to and dissolve the root cause of the original issues clients sought help with in the first place. I also embed subconscious anchors that assist clients to manage the inevitable withdrawals, help them set a withdrawal schedule that works for them and which takes into consideration their work schedules, activities,families, etc and I refer them to Dr. Vladimir Topalo a European medical doctor and naturopathic physician (living in BC, Canada) who specializes in the natural detoxification and rebalancing of clients subjected to psychiatric drugs and other mind-altering substances. Diet is extremely important to the successful recovery. By employing the emotional detox (regression hypnotherapy), physical detox and rebalancing and lifestyle changes, responsible and committed clients have seen miracles. Some have been left with permanent brain damage (tardive dyskinesia, etc), but still they are happy, empowered, peaceful and most times back to work and life!
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Grace,
🙂 Welcome!
Your comment is, in my humble opinion, absolutely excellent; I am a strong believer in *all* that you bring to the table; we need more hypnotherapists like you in the world…
Respectfully,
~Jonah
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Hi Grace,
As one who slowly tapered off of 4 psych meds, I am concerned that many people in the withdrawal community are very sensitive to supplements and that detoxification would be the worst thing for many people. Many people (not all) have found that alternative professionals are extremely clueless about withdrawal and suggest remedies that actually worsen the situation.
I am also concerned that what you state that Dr. Topalo “rebalances” clients that this person is still playing on the misconception of psychiatry that people with a so called mental illness have a chemical imbalance that just needs fixing with supplements.
By the way, the only professional I would ever have seen regarding withdrawal issues is a neuropsychiatrist who is unfortunately out of my area. According to people whose judgment I greatly trust, this person greatly understood the issues of withdrawal.
So be careful about stereotyping people as you might be crossing off someone who might be the most helpful professional for withdrawal. I say this as someone who is extremely distrusting of psychiatry and the medical profession in general.
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In the 1960s, psychiatrist Abram Hoffer and biochemists Linus Pauling, John Smythies and Humphry Osmond did find a common “chemical imbalance” in chronic hospitalized patients diagnosed with schizophrenia. This was an unusually high level of metabolites of epinephrine they collectively called “adrenochrome”. I invite you to investigate the “Adrenochrome Theory of Schizophrenia”.
Now, some sixty years later, it appears that this high level of adrenochrome is not a cause or indicator of “mental illness” but is due to a genetic variation,the absence of Glutathione S Transferase.
This variation is common in the populations of Scandinavian countries and the substance Hoffer named adrenochrome was first seen on the retinas of patients of Swedish ophthalmologist Henrick Sjogren in the 1930s. If you research “Sjogren’s Syndrome”, you will find that the offspring of mothers diagnosed with the condition have a greatly increased risk of being diagnosed with schizophrenia later in life. Many people from non-Scandinavian backgrounds can and do develop the symptoms of Sjogren’s Syndrome, including elevated levels of adrenochrome.
For years, allopathic medicine has considered Sjogren’s Syndrome an incurable auto-immune system disease. Recently, however, diet and supplementation has been found to reduce the severity of the symptoms. Search “The Scandinavian Diet”. The basic principals of restoring adrenal health and lowering adrenochrome levels through diet and supplementation have been known since the 1960, and were essentially perfected by 1982 whan I recovered from a diagnosis of schizoaffective disorder with Orthomolecular Therapy. I used and still use the services of Analytical Research Labs, Phoenix AZ http://www.arltma.com
This is not to say that the Adrenochrome Theory explains the cause of all “mental illness”. However, this is one example of how allopathic medicine has ignored a nutritional (including supplementation) which has enabled many thousands of functional cures from schizophrenia and affective disorders in favor of symptom suppression with patented and prescribed neuroleptic drugs. Having high adrenochrome levels does not guarantee that a person will be diagnosed with mental illness. There are many cultural factors involved. Driving a Mercedes at over 100MPH on the highway in Germany is considered acceptable, while in the USA it could result in jail time and loss of license. Sobbing uncontrollably at the funeral of a loved one in the Middle East is understandable, but in the U.K. it could result in a diagnosis of clinical depression, ECTs and medication for life. Every different culture has its own “Thought Police” and its own ordinances which regulate the mental and emotional life of its citizens.
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A great essay Daniel, on a very thorny subject and I note the references to “trauma” in your essay and the comments section.
I’m wondering if there isn’t already an approach and support in place, which is being overlooked in the “hierarchical” perception of the helping professions in our 1st world countries? As we begin to understand more about traumatic experience and stimulation of a “flight” from sensations within the body, are overlooking a whole profession of “body psychotherapists” as a resource to help people manage their experience of drug withdrawal?
Please consider this paper from a well respected body psychotherapist about the mind-body split, and who’s book “Healing Developmental Trauma” I cannot recommend highly enough;
““The Mind–Brain Relationship:
Originally written as a series of six articles for the International Journal of Psychoanalysis (1997), The Mind–Brain Relationship is a small, well-researched monograph with a broad perspective summarizing for the non-initiated the main thrust of contemporary neuroscientific concepts relevant to and shaping
current clinical theories. As such, it is a good introduction for those beginning the journey of integrating neuroscience into their practice.
Regina Pally, a psychiatrist, psychoanalyst, and UCLA professor sums up for clinicians, at the systemic level, the often daunting neuroanatomy, physiology, and experimental data and their clinical implications: (1) how the past influences the present; (2) why we need to feel our feelings; (3) why making the unconscious conscious is therapeutic; (4) why verbalizing feelings is therapeutic; (5) why we need other people; (6) how the mind and body are integrated with one another; (7) why we tenaciously hold on to belief systems, and how belief systems influence our perception, thoughts, and behaviors; (8) how anything we do repeatedly or experience repeatedly can be incorporated at an unconscious level and contribute to habits, character, and our relationship with others; (9) how nonverbal behavior affects both patient and therapist in the treatment situation.
Pally begins with a description of how the development of a child’s neural circuitry directly reflects and is shaped by early environmental influences and reviews how the brain actively constructs perception. She devotes a chapter to the structure, function, varieties and dynamics of memory, another to the unconscious and evolutionary roots of emotions and how emotional processing is the most important link in the mind–body connection. Yet another addresses the fascinating topic of hemispheric asymmetry and specialization, using the new information to offer insights into clinical phenomena such as transference, projection, dreams, and hallucinations. She closes the book by providing a comprehensive overview of the topic of consciousness research, the “final frontier” of neuroscience.
This little book performs a valuable service in that it delivers the main thrust of contemporary brain research. It brings center stage those topics that are of interest to psychotherapy and psychoanalysis, giving us, as body-psychotherapists, a foundation from which to transition our interests to more focused personal explorations.
The Brain and the Inner World:
Gathering and distilling vast amounts of information, connecting it to psychoanalytic theory, and presenting it in a way that can be understood by the neophyte without falling into a *reductionist attitude* is a veritable tour de force. In The Brain and the Inner World, Mark Solms, a neurophysiologist and psychoanalyst, and Oliver Turnbull, a Cambridge-trained neuropsychologist, cover much of the same territory as does Pally but from a different perspective. They approach the mysterious relation of body and mind with a focus on the neuroscience of subjective experience and span a greater order of magnitude, taking us full spectrum through the nested hierarchies of the small-scale neuronal world to the large-scale systems.
Entwined like yin and yang, knowledge of mind and brain, which has resided in the separate fields of psychology, psychiatry, and neuroscience, finds here a respectful blending. In his Project for a Scientific Psychology (1895), Freud had attempted to construct a systematic model of the functioning of the human
mind in terms of its underlying neurobiological mechanisms.
With the primitive knowledge of his time, he was not able to do so and eventually disavowed the project. Thus, for reasons of expediency, the subjective approach to mental science (psychoanalysis) split off from the objective approach (neuroscience), and since then, each discipline has developed along its own path.
Today, we have come full circle; neuroscience has caught up with psychoanalysis and the movement is under way to bridge the historical divide and build interdisciplinary links. In order to understand how mental disorders arise and in order to develop increasingly efficient therapies, Solms and Turnbull make the case that clinicians can no longer afford to be ignorant of the complexities of the neuroscience of human subjectivity. The core of the book demonstrates that a substantial body of neurobiological knowledge now exists which is sufficiently advanced to be of interest to psychology, psychoanalysis, and I would add, somatic psychology. ………………….
………….CONCLUSION:
When I began reading neuroscientific literature, I fell in love with the vocabulary. Words such as neural oscillation, parcellation, and sinusoidal waves, like music, evoked in me a sensory resonance born of a mysteriously intangible recognition. Perplexed, I surmised that this terminology activated contact with a dimension of implicit experience where words bridge the passage of the body through the mind and the mind through the body. I became interested in exploring a rationale for these powerful, yet easily overlooked, responses.
It occurred to me that most of us tend to observe ourselves at the macro-level of organized cognitive and emotional systems and seldom, if ever, attempt to include in our range of daily attention the dynamic processes now observed and portrayed at the microscopic cellular or molecular levels. Do we, or can we,
have a direct experience of ourselves in those smaller ranges, or are they simply too far out of the reach of perception and therefore fated to remain implicit and unconscious?
To those who explore the body in its subtle dimensions via such approaches as Vipassana, Body-Mind Centering, Continuum, or Cranial Biodynamics, it has become apparent that focusing solely on macro systems of awareness curtails a rich web of direct biological experience that, when ignored, leaves us out of connection with the body’s deep knowledge, ancestral wisdom, and healing potential.
We are still at the beginning of understanding the relationship between mental illness and its underlying neurobiological processes. By asking questions such as “What is feeling?” “What is consciousness?” and “What is the self?” neuroscience has moved research to an affective focus that seeks to penetrate the very heart of the body’s subjective life.
Through the lens of neuroscience, symptoms are increasingly seen as the dysregulation and disorganization of neural networks; as a result of this new research, there is a growing need to expand the conception of what constitutes viable and successful clinical interventions.
The old idea of a predetermined and static brain, which from today’s perspective appears to have been a kind of neural fatalism, is replaced by the knowledge of a neural plasticity that allows the brain to constantly reshape itself to meet new circumstances.
We are in need of clinical approaches that better utilize the neurobiological mechanisms of learning and change that are based on use and enriched experiences. As body-centered psychotherapists, our somatic perspective has trained us to consciously focus attention on subjective experiences that arise, bottom-up,from within the bodily self.
We are in a unique position to contribute a distinctive point of view to clinical applications that (1) encourage an ever-growing interaction between consciousness and its biological roots, (2) challenge our assumed neurological limits, and (3) take us beyond the indelibility of developmental critical periods. It is hopefully more than a visionary dream to imagine that somatic psychotherapy can draw on its rich tradition to contribute valuable insights to the practical application of neuroscience with approaches that harness the plasticity of our nervous systems by stimulating neural connectivity, expand the inner reaches of the brain, regulate and control unnecessary destructive impulses, and enhance the interactive cooperation between sensations, emotions, and thoughts—and thus maximize the potential for gene expression and brain growth.” _ALINE LAPIERRE, PSY.D.
Aline’s website has a host of information about the “somatic” approach to healing trauma and I personally believe body psychotherapy to be an invaluable resource, for helping manage the so-called symptoms of medication withdrawal, as the body’s natural healing resources recover from their enforced sedation.
http://www.cellularbalance.com/
Best wishes to all,
David Bates.
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What is in a state of the art tool box for pysch-drug withdrawal beyond what is already being advised? #1 a pysch-survivor #2- Hal Huggins Dentistry #3-YuenMethod a Chinese energy healing system. It’s advantages – can test before even beginning for the best withdrawal strategy for a specific individual,on 6 different levels, spiritual,psychic,mental,emotional,psychological,and physical.#4 Traditional Naturapathy and Homeopathy #5 The inventions of Fred Abbe, including a safe do it at home replacement therapy for ect or for those times a person feels they need to be going into a psych-hospital.It uses the green colored mineral bath called Batherapy several handfuls in a hot water filled bath tub ,after taking specific amount of niacin according to body weight(1000 mg for a person weighing 180lbs).,after red blotchs appear on skin , enter tub and rub body down with a swedish spong loofa .You’ll probably fall asleep so wear an inflatable collar around neck to prevent drowning or have someone else in the bathroom with you.If you have heart problems ,niacin could be counter indicated. When you wake up you will feel wonderful. Another invention is the Gem Stone Tranquilizer neckless which puts a person in a zen state.Made with lots of Amber,Amethist,Rose Quartz,and Lapis. Make one yourself. Best Wishes to all. fred
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Here’s 2 more essential state of the art tool box item’s .#5 You would be short changing yourself if you did not own a vegetable juicer before you started your attempt at tapering off .(I mostly agree with Altostrata and will check out all links provided).Here is Fred Abbe’s, Total Relax Vegetable Juice Formula.8 ounces of freshly made juice mixed with 8oz. spring water twice a day. Ingredients,organic if possible dark green lettuce,green cabbage,beet,celery,garlic,ginger,cucumber,parsley,brocolli,Thumb size piece of carrot,one third of an organic lemon.Remember this freshly made juice will go right to the brain just like alcohol does and you will feel it’s wonderful relaxing effect.#6- Drink Doc’s (Joesph Liss ND )tea ,you’ll have to make it yourself . Equal parts fennel,alfalfa,elderberry,nettle,anise,dandelion,uva ursi,yarrow,comfrey. Drink it whenever you want to. If you really need something stronger. Get a herb preparation book and make a herbal extract out of the same formula equal parts. If for some reason you can’t do this at least drink chamomile tea .You can always tell if you are using to much of the extract .If you get a headache or diarrhea just simply back off on the amount your’re using.Remember the most important thing is to go slowly even if it takes 2 years or more.I know success will be yours. Best Wishes,Fred Used juicers can be found in resale stores for $15 or $20 .They may be dirty ,the secret is they can be totally cleaned with powdered automatic dishwasher detergent .Just soak the non electrical parts for a while ,then wipe off then thourghly rinse off. Plug in and try to run the juicer before buying to make sure the motor is good.Take Care,Fred I hear the sounds of freedom.
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Many commentators here are addressing relapse or treatment of “mental illness.” Some non-drug treatments are indeed effective.
But it is crucial to differentiate between the iatrogenic condition induced by psychiatric drug withdrawal and natural neurological variation.
For the most part, the symptoms of psychiatric drug withdrawal syndromes are caused by autonomic dysfunction of a type that is not seen in nature — except in cases of chronic exposure to toxins.
The autonomic nervous system is as complex and mysterious as it is important, as it runs all the “automatic” functions of your body, such as heartbeat, blood pressure, digestion, etc. through a poorly understood web of feedback mechanisms. Dysautonomia can have an intense effect on cognition and emotion as well.
Even cardiologists and neurologists only very, very carefully attempt treating the autonomic nervous system. When you “adjust” one area, it tends to cause disruption in another.
You cannot treat psychiatric drug withdrawal syndrome as a psychiatric illness. It is not an emotional state, it is dysautonomia. This is why careful tapering to the tolerance of the individual is key to going off psychiatric drugs. Once autonomic dysfunction takes hold, recovery can take a very long time.
There are no silver bullets for dysautonomia. For the most part, you have to adopt healthy habits that are gentle on your nervous system and wait for it to heal.
I urge anyone who is concerned about getting people safely off psychiatric drugs to look at many, many case histories to see what’s involved.
Don’t try to guess what people need from one case or a handful of cases, or from a theory of what might work. See what people who are trying to go off psychiatric drugs actually need by reading their stories.
There are a couple dozen peer-run Web sites for psych drug tapering and about the same number of Facebook groups. Search by the name of the drugs, for example: “Seroquel withdrawal”, “Effexor withdrawal”, “Ritalin withdrawal”, “Xanax withdrawal”. You’ll see hundreds of thousands of posts from people who are going through withdrawal.
To be sure, the ones who never had any problems going off their drugs are not posting on the Web. But if you’re planning a withdrawal program or are otherwise interested in the subject, you would be best prepared to understand the worst that could happen.
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I quote Joeseph Liss ND one of the greatest natural doctors that ever lived and who taught me. “They hide what they don’t know behind terminologies.” If there is any life left nature will always cure it.” “There is much in little, and how!”Give nature half a chance.”
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TLDR; thanks for the article! I think anyone who has any experience in this “system” understands that what is needed the most is a glide path for those individuals experiencing this trauma. My efforts are focused on what I can do right now to bring relief to all those suffering this trauma. I believe it’s time for all of us to starting filling in potholes in this road at each and every step along the way, from prevention, support during the crisis (involuntary treatment), and long term recovery.
Hi everyone. I’m not going to get into my life story or why I am getting involved. Let’s just say I have never been on any of these drugs, but I know someone who has been and have seen the damage first hand for the individual and everyone else involved. 15 years of being on the worst of the worst of these drugs for this individual has indeed created a landscape of a war zone.
I do have a couple of observations, suggestions, and points that I will attempt to list here.
1.) Thank you to the author and all of the other resources I have found in my brief look at the alternatives to treatment. You have no idea how much hope it gives me after facing off with what I call pseudopharmachiatry.
2.) My personal background I believe is well suited to being a key component in bringing about change that everyone is talking about.
a.) I have a family member suffering this “system” for 15 years
b.) I am professional web developer of 10 years
c.) I have been a political activist and have ties to large scale educational campaigns (presidential runs in 2008 and 2012 and gearing up for 2016)
3.) It seems like all of the information for “alternative” treatment is out there and that is all well and good. From my perspective however, this information is “static”. In my profession, static information is not really information at all. A perfect example is this article. It was written over a year ago, there was a flurry of commentary on the information, and then the information got swallowed up by the internet. So unless someone happened to come along at this exact moment in time, they missed a chance to activate.
4.) One of the things the “patient” that I am emotionally tied to has always wanted to do is have a radio program. He tried and tried, I tried to help him, but never really materialized or had a purpose.
What I propose, as a way get this information and message out there in a dynamic/non static format is for ME to build a radio program. The goals of this program are very lofty in it’s production capacity, however I think the purpose would be very clear.
I want dynamic content. I want a place on the internet where people can go and tune in to a program that is entirely focused 24/7 on sharing this information.
There are certainly enough incidents occurring to have plenty of content. There are certainly enough professionals who are deeply vested in this core societal issue to give the program credit.
In the coming weeks, I will be laying the ground work for this radio program. I will be looking to start gathering up ALL the static information that is out there, including the many videos films and documentaries, chats, forums etc etc.. and turn this into a dynamic source for “patients”, families, activists, and anyone else who wants to participate in the radio program.
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Thank you, Daniel, for this excellent article. And thanks to the comments, as well. Coming to this discussion late, after looking for and not finding any program anywhere that could help my daughter, I’m desperate for someone to set this up NOW. Or as soon as possible. Who here would like to form a feasibility study team?
I think the two main obstacles will be (1) funding — because this needs to be free or as close to it as possible, and (2) the time it takes to SAFELY taper off neuroleptics — especially when there is poly-pharmacy involved and the need to get off several debilitating drugs sequentially.
Funding: Grants, endowments from wealthy donors, possible low fees for housing based o % of income. Government funding seems improbable, but perhaps not.
Time: People need to be able to stay for as long as it takes. This will vary individually, but most will need at least several months to a year to taper their drugs, maybe more. And that much time will also be needed for therapy to help with the psychological issues that were repressed/deadened by the drugs and still there, as well as to develop new healthy routines and social skills.
I think that this needs to be residential. Many people who have been on these drugs have little or no social/family supports, and doing this alone on an “outpatient” basis is the luck of the draw whether they can find supportive therapy and doctors, much less help with diets, cooking, and finding their way back into engagement with life.
I like the idea of a “health spa” type approach. But also feel it is important to involve people in their own care and healing through responsibilities of various kinds that contribute to a “community” atmosphere — as they are able. Ability will wax and wane.
Altostrata’s comments about the effects of the neurotoxins on the Central Nervous System, and therefore, avoiding withdrawal syndrome as much as possible through slow tapering are very well taken. There are also underlying psychological issues for many if not most that require a lot of care and empathy and therapy.
Again, is there anyone who would like to be involved in a feasibility task force? I have some professional background with grassroots fundraising, though not grant writing, and would gladly put a lot of time and energy into supporting this project in any way I can.
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In addition, I believe most if not all of what manifests in life as “psychosis” stems from early childhood trauma. We will need very skilled healers to help people address these issues. This is not easy, and withdrawing from neuroleptics will almost inevitably bring these issues to the fore, as well as the countervailing resistance and denial that was a necessary survival response to unbearable pain at a very young age. When these things come up, they threaten to overwhelm, and the desire to retreat back into the deadness of psychiatric drugs can be strong. This will require a lot of support, patience, and skill … and human wisdom.
Finding the right “team” to staff this will be crucial, and must be made up of people with a passion for healing and caring and loving other people in trouble.
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Does any such people in the UK exist in facilitating a withdrawal plan ?
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I realize this is an old post but what is somebody in my own situation supposed to do now? I have been sick for nine months straight, suicidal through most of it, and I now have a whole slew of neurological problems from the drug zyprexa. I still am taking neuroleptics and would see a doctor if it would help.
I learned of survivingantidepressants too late, as I had already destabilized my nervous system. Reinstating zyprexa doesn’t help me, no drugs can help me, a therapist is cute and support is great, but there is something physically wrong with me. Can anyone help me? I am quite sick and have been for a while, after almost a year I still don’t feel much better? Conjecture and theorizing is great but this is an urgent matter that most doctors are arrogantly ignorant of.
How do I cope with this? Realize that people are killing themselves over this. Many people in my shoes would have been to the ward numerous times in my situation, but I know better than that. It is a solitary feeling when the doctors that drug you up in the first place are nowhere to be found when you decide it is time to move on with your life and get free of these so called ‘meds’. They turn there back on you, insist it is a return of your symptoms, and shun you because you don’t buy into their particular brand of pharmacology.
I applaud you for your efforts but being chalked up as collateral damage is infuriating. We need help now or better yet, when these drugs came out in the first place!
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