The Wunderink study has been discussed here in other blogs (here, here, and here). In brief, using a randomized control design, Wunderink found that in adults diagnosed with a psychotic disorder continuous use of neuroleptics was associated with worse functional outcomes than intermittent use. Higher doses were associated with worse outcomes than lower ones.
These days neuroleptic drugs are widely promoted to treat depression and they are often used “off-label” to treat behavioral problems in children. They are among the most widely prescribed drugs; given the theory that “schizophrenia” affects 1% of the population, it is clear that many individuals – adults and children – who do not have this diagnosis are prescribed these drugs.
Is the Wunderink study relevant to those who do not experience psychosis?
As Joanna Moncrief has argued, there are many reasons to think in a drug-centered rather than a disease-centered way. For instance, it is not controversial to state that the benzodiazepines (Valium and others) affect everyone in similar ways; they will induce a soporific effect on anyone, not just those who have difficulty with sleep.
Although it may be less obvious, we should expect that neuroleptics have similar effects on people regardless of the diagnosis. When we learn that individuals diagnosed with Schizophrenia who take these drugs over several years are less likely to be working, we need to be worried about everyone who takes these drugs over an extended period.
I am not sure child psychiatrists or adult psychiatrists who prescribe these drugs for depression will read the literature on schizophrenia. In a recent report, it was noted that there was a three-fold increase in the incidence of diabetes in children who are prescribed these drugs. It is straightforward and obvious why child psychiatrists should be concerned about that report. But Wunderink’s study raises even more concern.
If psychiatrists choose to prescribe neuroleptics to children, depressed adults, and others, I do not think they can ignore the increasing data on impaired functional outcomes associated with long term use of these drugs.
First do no harm.
Bravo! Well put, succint, to the point.
Even Dr. Ken Duckworth, Medical Director of NAMI (considered “the enemy” by some here in MIA-land), expressed serious caution about the use of antipsychotics with children and stated he never prescribed them to kids.
Duckworth? ooh, yikes. How many quack jokes do you think he’s had to endure? I’m sure he’s above it but even so, Quack Quack. lol
“He is also a family member of a person living with mental illness.”
OH, now I see. The family member has the unfortunate role of carrying the burden (of the Quack jokes).
http://www.nami.org/Template.cfm?Section=Bios1&template=/ContentManagement/ContentDisplay.cfm&ContentID=36882
Shame on me for making fun but I mean, c’mon. WOW.
Thank you, Russerford. What I hear – from good and well intentioned psychiatrists – is this sense that when confronted by people who are suffering that they feel compelled to do “something”. That something may involve prescribing drugs for which the evidence base in support of their effiacy is sketchy. It seems critical to get the word out that these drugs are far from benign and the short term “benefit” of offering “something” is far outweighed by these long term negative effects.
Working in workers comp I deal with many folks with chronic back pain who have been put on these drugs (zyprexa and even more often Seroquel) simply as an industrial-strength sleeping pill. The results can be a devastating pile-up of side effects that are the LAST thing you need if you’re coping with a serious back injury: serious, debilitating weight gain and diabetes, drowsiness. I’m sure the long-term effects on your mental abilities are not good either … of course so many doctors are giving these drugs out in tandem with the Vicoden, Ambien, Xanax and lord knows what all else that fixing the blame can be a delicate task …
I also wonder if these drugs — especially Risperdal — are doing their nasty bit to contribute to the breast cancer epidemic in this country. They do boost prolactin and can cause men and boys to develop female-type breasts. I read last year that women with serious mental illness have three times the breast cancer risk as the average American woman — and breast cancer is NOT strongly linked to smoking so that’s not a likely explanation.
My friend, a guy, was overprescribed Risperdal and developed prostate trouble. This contributed to his losing his job.
I missed periods due to Risperdal. I had bone loss and broke my leg. Then Seroquel caused rapid weight gain and, I assume, a dangerous and risky spike in estrogen. I’d say the only advantage of all that eventually was that my bones healed. I didn’t care for being twice the weight I should have been, nor the discrimination. Not only that, afterward my treatment team denied that I ever had prolactin problems and denied that I had had osteoporosis from it, but it really did happen. This is coverup!
I don’t understand why doctors don’t own up to their errors. I never understood their reluctance to admit Seroquel caused weight gain. At 200 pounds I could no longer walk and was in a wheelchair for three months. And my therapist was telling me to Accept Myself! Hah! And get bigger and bigger? I couldn’t walk nor even stand up, and I was supposed to accept this as inevitable and never ever blame the drugs nor those that gave them to me….
I’m so happy that I told them to go screw in the end. I’d tell that to anyone. Take charge of your health. Just stop believing what doesn’t even make sense to you.
They are not gods. They are not gods. They are not gods. Please stop worshiping doctors. You don’t need their permission to live your life. Don’t let them run your life. Go be happy, be free, be yourself and live.
” I read last year that women with serious mental illness have three times the breast cancer risk as the average American woman”
I wonder – of the serious mentally ill women, how many are within the poverty levels? How many have histories of childhood sexual abuse, neglect and all other abuses? How many are within the middle class (lower middle class? upper middle class?) and how many take yearly family vacations? How many shop for their clothes and shoes at WalMart and how many shop at American Eagle and the mall? How many are upper class (oh, silly me – they’re NEVER included in the statistics, lol).
I wonder some more.
Can sexual abuse cause breast cancer? I’m serious.
I wanted to comment that, tapering off of Seroquel has illuminated for me, at least in a subjective way, what that “something” Sandy refers to looks like from the perspective of someone experiencing a psychosis (let’s please just call it that for purposes of this post), and then what it looks like for someone who, years later but still on Seroquel but no longer experiencing a psychosis. There has been much said about neuroleptics being little more than tranquilizers that induce people to no longer care about the concerns they have while in the throes of a psychosis. Subjectively, that seems right as a mechanism of action from my experience. While hospitalized, my experience was I suspect no different than many of the other folks on this site. Which is that, the more I communicated my distress and defended my reasons for it, the higher the psychiatrist increased the dosage. Eventually, yes, I was so sedated that I forgot what I was so concerned about and then, by the time sufficient wits had returned to me, I became newly more concerned with immediately practical things such as, most significantly, earning my clothes back and then getting out of the hospital so that I might mitigate damage to my personal relationships and employment situation. Notably, as I suspect is also the experience of many here (perhaps not the people you’ve worked with, Sandy), so long as the offending beliefs were no longer being emphasized by me, no effort was made by the psychiatrist to revisit what exactly the beliefs were about and where they came from. Instead, the (highly questionable in my view, if true) standard of care appears to be to avoid any discussion or further thought of the beliefs, so as to avoid a return to them and the purportedly accompanying high risk of succumbing to them as a result. Fast forward to 8 years later, and, while tapering off I notice something which, subjectively to me was chilling. I’d forgotten a dose and then took one mid-day, to keep up because I am being extremely deliberate and vigilant with the taper, which I very strongly recommend to anyone out there interested, because so far it has been successful even for someone with 4 prior episodes. But I took this mid-day dose only after having been used to the greater clarity I had acquired from having begun the taper. So as a result, what appeared to happen — without my having at all anticipated it — was that, while I was engaging in conversation I encountered greater difficulty than had been the case following the recent cognitive gains, in keeping track of my thoughts. It was as if a thought would flee from me just as I was articulating it. I wonder if this effect has been examined more closely, beyond fuzzy descriptions of tranqulization and reductions of symptoms. This concerns both the un-psychiatrically-diagnosed as well as, also seemingly relevant to Sandy’s post, the diagnosed who are no longer suffering from acute psychosis. As I described elsewhere on this site, Seroquel certainly seems to makes you no longer care about your immediate concerns, and may make you in fact forget any train of thought you happen to be communicating at a given moment. Especially if what you’re trying to communicate is something you care about — the more passionately you feel about something, the more important the point you’re trying to make, the very thing that you’re trying to convey: those thoughts and feelings are snuffed out and silenced by the effects of the drug. The drug stands between the self and the outside world. The intended and actual effect of neuroleptics reminds me of something Nietzche wrote:
“Consider the cattle, grazing as they pass you by. They do not know what is meant by yesterday or today, they leap about, eat, rest, digest, leap about again, and so from morn till night and from day to day, fettered to the moment and its pleasure or displeasure, and thus neither melancholy nor bored. […] A human being may well ask an animal: ‘Why do you not speak to me of your happiness but only stand and gaze at me?’ The animal would like to answer, and say, ‘The reason is I always forget what I was going to say’ – but then he forgot this answer too, and stayed silent.”
“Untimely Meditations,” by Friedrich Nietzsche
I can attest to everything that you mentioned about your experience with Seroquel. I was a “patient” in the state hospital where I live and over and over again I witnessed psychiatrists upping the doses of the toxic drugs for anyone who complained about the bad effects they were experiencing on the damned things. “Patients” were never listened to, just given higher doses of the drug they complained about! How much sense does this make?
As a staff person at this same hospital I witness people who come in very much able to express themselves turn into people who can’t hold one thought in their head. It saddens me to sit with them and listen to them try to express their ideas and not be albe too….they just stop and drift away somewhere and then get frustrted because they can’t say awhat they want to say. I meet these people when they come through Admissions and then I watch them deteriorate into people who can barely state their name. And this is considered the “best practice of care.” I also know that the doctors never, absolutely never, discuss the “offending beliefs” and just keep poking people full of the toxic drugs. So, the end result of this is that people keep coming back again and again through the revolving door in Admissions because no one ever helps them deal with the issues that cause the “offending beliefs” in the first place. And then everyone stands around and wring their hands and lament the fact that the “revolving door” exists! It’s disgusting and sickening and I get to see it all on a daily basis!
Thanks for sharing your experience and I’m glad that you’re getting off the toxic drugs.
I saw many patients sitting in a drugged daze as their family and friends tried to ask the staff what is happening only to be told the doctors knew best. It was particular sad when the family wasn’t English speaking or very elderly so their concerns were easily dismissed.
Thanks, NI. Your comments are of great interest to me. I have never had these experiences so I can only rely on what people tell me and I an interested in all perspectives and experiences.
Your description of no longer caring about immediate concerns may be the clue as to why something that appears in some contexts to be helpful may also have long term problems.
A delusion can be considered to be an idea that someone is intensely concenred about – in the view of others the concern is disproportionate. So if the concern lessens, that would be viewed as a good thing.
But if this lack of concern is not specific, i.e., if it creates a more global lack of concern, then it creates more problems even as it appears to be helping in some way.
What I hear from the people I see in my office is quite variable. some of them appreciate the effects of the drugs while others abhor it.
Sandy
“some of them appreciate the effects of the drugs”
And how can those people be trusted to make that judgement?
What if, underneath it all, what they’re really doing is “behaving appropriately” because they know what is expected of them and want they want is to be seen as a good, cooperative person (motivation: seeking acceptance, approval and praises).
Or, maybe for those people – it *is* the drug talking and they truly feel better because of the drug. But I wonder if there’s any psychological screening to determine whether it’s the successful effects of a drug or if there’s a desperate attempt to win approval and be loved.
How is somebody treated in the clinical world when they report that they’re feeling better? Greeted with smiles? Congratulated? Offered more, better attention? Are they accepted, and do they feel more welcome?
“want they want”
sigh. *what they want.
(edit button?? 🙁 )
Who’s being paternalistic now?
N.I.,
Is that for Dr. Steingard or myself?
Respectfully, it is for you, mjk. I can only speak for myself. And as myself I recognize that, notwithstanding the experiences and grievances we may all have in common, we cannot speak for each other. There are some whose voices are not heard that some of us may feel, with strong basis I believe, we should take it upon ourselves to amplify. There are surely others who lack the ability or information to make sound judgments on their own behalf, who may need the assistance of others. But there are also others whose decisions regarding their use of psychiatric drugs (including decisions to take them, in whatever circumstances) are fully informed: informed by science, by opinion (both mainstream and other opinion), by peers, and, most of all, by their own subjective personal experience. I don’t purport to speak for them, or, for that matter, for anyone else who chooses not to adopt my opinions. Nor could I, because I agree with many of you here that each person is entitled to his or her own decisions about what they do with their bodies, in the end. I would focus my energies as an advocate, if I were one, on making sure that all of those at risk are fully informed in all relevant respects.
So, you think I’m speaking for others?
You may ask me to clarify but please, don’t presume to know my meaning or intention.
“some of them appreciate the effects of the drugs”
Let’s remember that we’re primarily dealing with psychology. Psychiatry is the *response* to the psychopathology.
I made my point clear:
“But I wonder if there’s any psychological screening to determine whether it’s the successful effects of a drug or if there’s a desperate attempt to win approval and be loved.”
I was using critical thought. To expand on that critical thought, the basis of it is precisely this:
Are claims of drug efficacy automatically and passively accepted, without question? We ALL know that many people LIE in locked-ward settings in attempt to get out.
What’s to say the same manipulations aren’t present in clinical settings, including outpatient hospitalizations?
I hope somebody sees the point I’m getting at. I feel like I’m making it very clear.
To anyone,
Oh yeah, and I have to defend myself just a little bit:
I wrote, “Or, maybe for those people – it *is* the drug talking and they truly feel better because of the drug.”
So I *wasn’t* denying or undermining people’s claims of drug efficacy. I acknowledged the possibility (and for some, their reality?) of drug efficacy.
~ mjk
mjk-
This seems to come up again and again. People here who are angry with psychiatry are angry in part because they have not been heard. They are angry, for instance, that if someone protests and says the drugs do more harm than good that this opinion is dismissed as “lack of insight” or anosognosia. I understand that anger.
I have been working in a systematic way to taper the doses of the drugs people who see me are taking. We have frank discussions about the long term problems associated with these drugs.
When the dose of neuroleptic is tapered, there are some who will hear voices or the voices they hear will get louder.
We talk about these voices. We talk about what they might mean. We talk about different strategies to live with them – to engage them, to ignore them. I encourge attendance at the local Hearing Voices group. I hand out copies of the National Empowerment Center’s handbook on living with voices. I am honest about what I do and do not know about these drugs. I do not take a “symptom focused” approach and insist the only goal is to erradicate voices. The only goal to to respect the person who is sitting in my office.
Some people choose to hear the voices than to take the drug or increase the dose.
However, some say that they feel better on the higher dose of the drug. That is what they prefer. To ignore that or to dismiss it as a desperate attempt to win approval (from a psychiatrist who is fully supportive of tapering the dose) seems extremely disrespectful and akin to the kind of disrespect that so many have protested on this site.
Sandy
I’m questioning claims of drug efficacy and not from a place of anger (in fact, there was no emotional component in my comment whatsoever).
Very specifically, and without consideration of how it is applied (delusions, voices, depression, anxiety, etc.), I’m curious to know more about exactly this and, from a psychological point of view:
“some of them appreciate the effects of the drugs”
Do they? That’s almost news to me! You’ve given me an example of how some people appreciate the effects when it is applied to “voices” – yet the comment where that statement originally appeared wasn’t about voices (there was mention of delusion but I wasn’t responding to delusion. I was responding to a VERY SPECIFIC statement, isolated out of context, which I have quoted three times now).
Somebody else here at MIA also noted how claims of drug efficacy are not questioned. At your mention of drug efficacy, I questioned.
—
So, I end up with “paternalistic” and “extremely disrespectful”.
mjk-
I am sorry if I was not clear. I did not intend to accuse you of being angry or disrespectful. I am responding not only to you but to others who have raised similar issues in previous posts.
In about a month, I will post the results of two years of tapering neuroleptics. About 40% of people choose to stop tapering. The reasons vary. Some people do hear more voices and do not like that. Some people find that they have delusional thoughts and they do not like that. Some people just get frightened about having a recurrence of experiences that they did not like. I can say that they are making these decisiosn with a psychiatrist who is very supportive of tapering.
I have no way of knowing to what extent this is withdrawal from the drug vs. the emergence of the initial problem that resulted in drugs getting started or if it is a psychological reaction to doing something that they have been told in the past is bad for them. I am not even sure there is a way to make these distinctions.
It is an interesting thing about “claims of effiacy”. The effiacy of neurolpetics is not really questioned in the psychiatric world – at least not in terms of short term impact on reducing psychotic symptoms – but they are widely questioned here. I am trying to bridge these two worlds.
I do not think it is an effective change strategy to deny all claims of efficacy. I think it is better to be specific about what hose claims are based on (short term studies that focus on a narrow set of “symptoms”) and to point out the limitations of those claims.
But that is just me. No disprespect towards your view is or was intended.
Sandy
I wasn’t intending to deny or undermine claims of efficacy (but I can see how somebody might think so). My mind-set is based on three points:
1. People do lie about drug efficacy
2. I’ve recently oriented my mind to / began focusing on psychology (and psychopathology) itself
3. I’ve learned to think critically
I’ll finish by saying that I think drug efficacy is a very interesting topic and I don’t see much of it on MIA. It is mostly “toxic drugs”, tapering, occasional lawsuits against “big pharma” and out-of-control prescribing practices (apparently, very much NOT including yourself).
I might google drug efficacy today, just because my curiosity is significantly piqued. Hmm.
http://www.peh-med.com/content/6/1/8
“This meta-analysis finds that 42-70% of depressed patients improve with drug and 21%-39% improve with placebo.”
What explains 21%-39% improvement with placebo? Something psychological, maybe? Like, winning approvals?
Does placebo effect make people first-class fools?
If placebo by definition means:
2. Something of no intrinsic remedial value that is used to appease or reassure another.
Are doctors and other professionals not placebos, in some cases?
What if some people can be healed and their symptoms alleviated simply by coming into contact with an actual or perceived exceptional care-giver / care-taker?
Apparently, the point I was making has already been established by somebody else:
“The physician has even been called a funny placebo”
http://en.wikipedia.org/wiki/Placebo#cite_note-20
If placebo effect is so powerful, wouldn’t it be the ultimate treatment for delusions and voices?!
And this person says, “Placebos are a reminder of how little is known about mind-body interaction. The placebo effect may be one of the most versatile and underused therapeutic tools at the disposal of physicians.”
http://www.surveyophthalmol.com/article/S0039-6257%2899%2900060-0/abstract
Ha! Eyeballs. heh heh.
I don’t even want to ask this question: But then what explains 42-70% of depressed patients improve with drug? What if it is a second placebo effect (taking an actual drug but the effect is primarily empowered by an underlying belief that taking the “medicine” will work)?!
From the first link:
“Life may become bleak, empty, or pointless and the individual can experience despair, tearfulness, anxiety, agitation, appetite changes, loss of energy, loss of motivation, sleep disturbances, impaired concentration and attention, low self-esteem, feelings of worthlessness, excessive worry, irritability, temper outbursts, decreased interest in activities including sex, excessive guilt, painful physical feelings, and suicidal feelings and behaviors, including actual suicide. The most severe cases can develop psychotic symptoms, including delusional ideation and hallucinations.”
See, now when I look at that long list I do not see a diseased brain or messed up DNA / genetics. I see somebody who needs a whole lot of QUALITY, genuine attention, care, understanding, support … and all of that we get from Human Beings. Or, more accurate to say – WE DON’T GET – and that’s how and why some people suffer some the worst possible conditions. And if ANY of those needs are being met by a doctor or other professional, and the person is taking a drug, who knows for sure if it is the drug or the relationship that is benefiting the individual?!
Now back to placebo effect (awesome), this is pretty interesting: “Though not everyone responds to a placebo, neither does everyone respond to an active drug. The percentage of patients who reported relief following placebo (39%) is similar to the percentage following 4 mg (36%) and 6 mg (50%) of hidden morphine.[126]”
So only HALF of people given morphine get the intended beneficial effect? I don’t think I’ve ever used morphine (and I know zero about it) but I assume it can and does make some people sick.
Well, I don’t know how people do this (drugs & “medicines”). It is mind boggling.
You make many important and valid points. See irving Kirsch’s “The Emporer’s New Drugs” for more on the placebo effect.
You make the very important point that the notion of effiacy -which seems in some ways so simple and straightforward – is quite complex.
Sandy
I agree that you make important points here, mjk. As I have read you make in other posts. And I think the concern we have been discussing regarding the potenially detrimental cognitive effects of neuroleptics is underscored by the study just posted on this site today, evidencing that tapering off of certain neuroleptics increases cognitive functioning. See http://schizophreniabulletin.oxfordjournals.org/content/39/5/993.abstract . But my concerns are not limited to cognitive functioning, but extend into emotional and social functioning, which, of course, are both interdependent with each other and with cognitive functioning. The emotional blunting effects, which I can also describe with painfully acute specificity, as well as the decline in social functioning I have experienced (and can recount with similarly horrific detail) are as profound and debilitating as any cognitive effect. Why are these side-effects not acknowledged in the mainstream? The only meaningful discussion of side-effects I can discern in the mainstream are the — likewise very serious — detrimental metabolic effects, such as those described below by aria. Should I conclude that the only reason why those effects are acknowledged is because Big Pharma has been forced to acknowledge them following billions in legal settlements concerning those side effects? Does mainstream science truly believe that cognitive, emotional and social side effects are of limited or no significance? Do scientists and psychiatrists believe that those effects may be adequately explained by evidence that those on neuroleptics satisfy the cognitively/emotionally/socially deficient profile and therefore existing and further research is unimportant, or unimportant when considering the risks of relapse? Setting aside the question of whether people diagnosed within the schizophrenia spectrum can truly be said to be sufferers of “negative symptoms of schizophrenia,” isn’t it clear — as Sandy and others on this thread and elsewhere do and must acknowledge — that neuroleptics are being prescribed to legions of people without that diagnosis (which I acknowledge accept raises many questions — I mean no disrepect to those so labeled)? Does the conventional wisdom also dictate that non-metabolic side-effects of neuroleptics may be explained away by nature or minimalized as unimportant in the face of whatever intended effect — on- or off-label — the drug is supposed to have on a subject?
“And I think the concern we have been discussing regarding the potenially detrimental cognitive effects of neuroleptics is underscored by the study just posted on this site today, evidencing that tapering off of certain neuroleptics increases cognitive functioning.”
BRAIN suppressants, so it makes sense that some functioning will resume once the deadly (DEADLY) drug is stopped (before it’s too late). I’ve got something of a chemical lobotomy (there will be NO recovery for me and I know it).
I am sympathetic with MJK’s point.Not that neuroleptics are not effective in some ways in the short run but that there are always psychological factors that explain why they are helpful to some people, and not to others. As a dissident psychologist I am often criticized in more drug friendly arenas of the Mad movement than MIA because in my recent book I violate what has become a sacred taboo in The Icarus Project: No one has the right to doubt that each patient knows best what drugs are best for her. I argue that all patients would be best if they stayed off “anti-psychotics” http://www.amazon.com/Spiritual-Gift-Madness-Psychiatry-Movement/dp/159477448X/ref=sr_1_1?s=books&ie=UTF8&qid=1379159490&sr=1-1&keywords=farber+gift
This purpose of this taboo was not merely to discourage pro-drug doctors from pushing drugs but to discourage radical psychiatric survivors from disparaging drug-using patients or from implying that the latter were being misled. This became the postmodernist pluralist dogma.
But it is a proscription not an epistemological insight–if it were, there could be no placebo effect. (Most patients who think they are benefiting from SSRIs are experiencing the placebo effect.)When I made this argument in my recent book many in Icarus Project were angry–the fact that I was not a survivor only aggrandized the anger at me. That did not stop me. I was not going to encourage any so called patient to take neuroleptics even subtly by acknowledging that ANYone benefitted from neuroleptics in the long run.AT TIP that IS done.
There were many risks of neuroleptics–many of them are discussed in Bob’s books . I’ll add here another one implied by MJK I think–the internalization of the medical model. I consider it my moral obligation as a dissident psychologist to discourage patients from taking “anti-psychotic” drugs unless they are already addicted. I was using a Moncreiff drug centered approach to argue against neuroleptics for years, in the 1990s. I had not read Moncrieff in the 1990s– I don’t know when she developed her drug centered approach.
My reasoning was that patients like non- patients did not suffer from mental illness but they did suffer from fear, terror and despair. But having witnessed the horrendous effect of neuroleptics–from tardive dsykinesia to emotional blunting (eloquently described by NI above) I could see no reason why a patient who was not indoctrinated would voluntarily take neuroleptics which were compared to
chemical lobotomies by their psychiatrist promoters when they were first introduced in the 1950s.
.
In the first place the “mental patient” who take “anti-psychotics,” too readily draws the conclusions from the temporary relief provided by the drug that she does indeed have a psychotic “illness.” She lives in a culture in which she has heard this since childhood—and is unlikely to have heard of the critics of the medical model. Even the very intellectually gifted leaders of Icarus had not read Szasz or Breggin when I interviewed them in 2009. Sascha DuBrul refused to read them although he devoured Kay Jamison. Why?
I was not able to figure out Sascha’s ambivalence about psychiatric drugs and their critics(I did not have enough information about his personal life) although I tried thus violating the pluralist taboo, and eliciting the anger on many TIPers. (Except for Sascha who does not take criticism personally) NI and Sandra agree that neuroleptics may be helpful because they make patients feel less intensely. NI gives a very insightful non-medical account of why patients sometimes find neuroleptics helpful in the short run, despite its tremendous emotional cost. Sanda agrees.
But again I do not think this justifies the non-medicalist (dissident)psychiatrist’s use of neuroleptics,except as agents of last resort.I do not think any “professional” should make it easy for “patients” to use neuroleptics. They are much worse than most illegal recreational drugs, let alone medicinal marijuana.
Neither NI nor Sandra mention any of Breggin’s books. I changed my naive position on drugs after reading Psychiatric Drugs: Hazards to the Brains and became blacklisted in the public sector just 5 years after getting my PhD. Neuroleptics were hailed when they first came out precisely because they made patients apathetic–and ward management easier.
But neither can we dismiss the placebo effect. MJK is right.
The placebo effect means a patient improves because a drug produces an expectation of improvement. (BTW MJK’s statistics for placebo effect are much too low; they are far lower that the definitive analysis by Irving Kirsch. In fact MJK placebos are arguably AS effective as anti-depressants.) It has been shown that placebo are more effective if the patients has a positive relationship with the psychiatrist dispensing the placebo. As written in No More Diagnoses “ having a good relationship with the prescribing doctor is a stronger predictor of a positive response to an ‘anti-depressant’ than just taking the drug regardless of who prescribes it.” I have observed that this is also true of neuroleptics.This confirms MJK point.
In spite of the harmful and painful side effects many patients trusted the psychiatrists. But, e.g., making a patient more apathetic about her voices is one way of reducing the fear evoked by hearing a voice in a secular society. Giving her a “minor tranquilizer” is another. The latter has many advantages. En-couraging someone is better than making them too dull to care.
Sandra writes: “I will post the results of two years of tapering neuroleptics. About 40% of people choose to stop tapering. The reasons vary. Some people do hear more voices and do not like that. Some people find that they have delusional thoughts and they do not like that. Some people just get frightened about having a recurrence of experiences that they did not like. I can say that they are making these decisions with a psychiatrist who is very supportive of tapering.” But can you say Sandra they have not interpreted the voices or delusional thoughts as symptoms of mental illness? Can you say they are making these decisions in a society and in a setting where altered states of consciousness are not discouraged? Can you say these patients did not choose to stop tapering because they feared heir illnesses were “returning”? Did you assure them there illneses were NOT returning? Or did you take an agnostic position? But we do not live in an agnostic culture. Did you ask the kind of questions to the patients that I am asking now?
I raise this as rhetorical question–I don’t expect you to answer it until you publish your experiment. Even if you did not do this at least you offered some patients the option of getting off the drugs. But my point is not intended as a personal criticism but as a commentary on the System. I would argue despite your good intentions if you treat neuroleptics as legitimate treatments rather than poisons you reinforce the medical model. .
I would like to see this studied with some methodological rigor and with double bind. My own observations is that there is an interaction between the effects of the drugs and the patients’ world views. Yet I have not seen any studies of this. For example take a patient who has been reading Peter Breggin and Bob Whitaker
and give her neuroleptics. I predict the drugs will have a more deleterious effect upon her than someone who had no exposure to psychiatric critics.We know from the recent studies you cited that patients not on neuroleptrics are going to do better in the long run. Throw in Peter Breggin and Bob Whitaker 101—and accounts by people like Laura Delano– and I predict these patients will get better quicker. This is not purely hypothetical: in the late 1980s and 1990s thousands of patients were reading Peter Breggin. Would David Oaks have had no episodes after his breakdown if he had not become a student of Peter Breggin’s work? It did not take 7-15 years for him to recover. Is that a coincidence?. I would hypothesize that those former patients in the movement who read Breggin got better sooner than those I interviewed who were not familiar with Breggin or Szasz or Laing.
Obviously there are some former patients who would have rejected Breggin’s work. They joined NAMI, or became consumers.. One of the variables is a receptivity to the critics of the system. Some patients were by nature more rebellious than others. For example David Oaks had been a long time activist before his breakdown at Harvard. My theory is that reading anti-psychiatric theories will greatly accelerate the speed of recovery. I did not have enough information to explain in my book why Sascha DuBrul felt neuroleptics helped him but I do know he would not read Peter Breggin–although I kept urging him (2007–9) to do so.
Panic is a common symptom of “psychosis”–that is it often accompanies voices or other unusual experiences. We know that in the few experiments done Valium was as effective as neuroleptics in sedating “psychotics.” Why? What is it we want to accomplish?. In my recent book I interviewed 7 former patients. Paul Levy and Ed Whitney agreed with me that what the shrink calls bipolar or schizophrenia is often a spiritual awakening. (I would argue it is never a disease.) Let’s say the patient is having a distressing hallucination. If we give a patient a Xanax –or a glass of wine (as Henry Stack Sullivan did in the 1940s) –you might mitigate the fear without producing a state of apathy. More than apathy the shrinks hailed Thorazine when it was discovered in 1956 because it produced a state of “emotional indifference.” Patients were described as acting and feeling like “zombies.” Benzodiazapines do not produce that effect. Shrinks had rationalizations for avoiding benzos. Is it because benzos are more addictive or simply more pleasurable? The withdrawal effects of neuroleptics are no less intense than those benzos that have a longer half life, but the latter do not produce the same emotional indifference, or the other pernicious side effects.)The ingestion of a neuroleptic in a psych ward is a medical ritual that convinces the patient she has a medical problem.
But assume as I do that for example the voice hearing patient is not suffering from an illness. But she may be very frightened. If the psychiatrist gives the patient a Xanax or a Klonapin the former is implicitly defining the problem as anxiety–she is underrming the medical model. She is giving the patient a drug which “mentally healthy” people use to take the edge off (unless they are addicts).Bruce Levine argues that cocaine and SSRIs are equally effective in the short run for despair––he disputes that either are helpful in the long run. My point is we are dealing with propaganda in the one case—“anti-psychotics” or “anti-depressants.
You are going to tell me that benzos are not without risks. Yes if the patients has a tendency to use drugs excessively Valium may indeed be more dangerous. But my point is that psychiatrists like yourself Sandra should use neuroleptics as a last resort and prescribe them with the same trepidation with which you would prescribe morphine.
Seth Farber, Ph.D.
http://www.sethHfarber.com
Seth,
Thank you for your informative post and links. My concerns about autonomy and choice are not epistemological either, but evidence-based. I have read Breggin and Whitaker and others — with great interest and eyes wide open. Their work is what brought me to this site and gave me the courage and sense of urgency to wean off of Seroquel. Nor have I discounted the significance of the placebo effect in psychiatric care, and I acknowledged in my previous post that the judgments of some are not fully informed or carried out with sufficient capacity. But I have observed first hand my own patently false and sensorily impaired (i.e. objectively inaccurate and subjectively tactless) beliefs and actions on them, well before I ever trusted or even saw a psychiatrist. These beliefs and actions are evidence to me that my brain was not functioning properly. This to me is uncontroversial and without question, and the conclusion is mine to not question. Others are free to and will disagree with me. As for treatment, this is much more thorny. As a person who has experienced what I observed in my own mind as dysfunction, I face a dilemma. I want to believe that the psychiatric medications I’m on are ineffective, or at the very least any benefits are far outweighed by detrimental effects, which would enable me to to believe that I can avoid that dysfunction, as well as dysfunction referred to in psychiatry as depression, without resort to harmful medications. But the risk of being wrong is simply too consequential for me to embrace, without scientific or medical training, scientific and medical conclusions beyond the scope of my knowledge and skill. Nor would I trust my own independent research, lacking the training to be able to arrive at reliable and fully informed conclusions. I’m left with having to face choices on whom to believe. This to me is not easy, and cannot, be based upon empirical assessment with sufficient reliability to warrant taking such high stake risks. Your distinction between addicts and non-addicts, the former of whom you’ve not said should under no circumstances be on neuroleptics (as I understood you), is an important one. As an addict seeking to free myself of Seroquel, and I accept “addict” as a fair characterization of my condition — , I live in a way as an inverse junkie. I want desperately to wean off of Seroquel because of the benefits of reducing, and trying to eliminate, side effects. But, for me, perhaps unlike the conditions of many others, my life is in a very good place, and so the lure of drug-freedom, in some ways like the lure of recreational drug use, is fraught with peril. And so I must take my own Hippocratic Oath and vow not to do myself harm by changing my brain in a way that could undo the gains I have made since last being unstable (i.e. when I tried to switch to another neuroleptic in 2010, and prior to that, before being on any neuroleptic). Whether my stability was in part due to a placebo effect — I don’t discount this possibility though it would only be a partial explanation — I am nevertheless stable. This is an unequivocal fact, because I do get to decide what stability and happiness mean to me, and I am extremely well educated, self-knowing and skeptically minded. Given this calculus, I am of the view that Sandy’s efforts — and those of others displaying similar courage and integrity as medical practitioners and researchers — to help people like me — people who are fully informed and want help — critically important. And I am not the only one in this position. I believe I can take this position and still agree with much of what is said by folks with different views than mind. I don’t see it as a binary choice, but a more nuanced one. We can be allies with each other and with psychiatrists like Sandy without a you’re with us or against us directive.
So, in sum, as an addict, and survivor and past sufferer (subjectively) of brain dysfunction, I feel little choice — given my responsibilities to my family — but to and rely upon the best of psychiatry as a conservative with a “little c.” Knowing that any scientific knowledge (admittedly, even by many psychiatrists, little) is in its infancy, and knowing that had I not started on the drugs in the first place (which might not have occurred without prior use of cannibis), I might not need to engage in the caution I do now. But I must engage in it, and it would be irresponsible for me to assume that the effect of Seroquel on my stability (short or long term) is necessarily and entirely a fabrication of my mind or that of my psychiatrist.
N.I.
Thanks for your comments.
My point when I used the word addicted was that many “patients” could not get off the drug without great difficulty if at all because they had been on them so long their body was habituated to them. For many, like you, it was not practical to even try. Most shrinks are quick to tell any patient who tries to taper and begins to experience adverse effects that their “illness” is coming back. I understand Sandy would not do that but my impression however is that she treats neuroleptics like any other drug– or “medications” as the shrinks all call them. Your observations bolster my argument that neuroleptics are NOT like any other drug, and psychiatrists should never get patients started on them. I cannot help but wonder if Sandy is still unconsciously influenced by the dogma–drilled in every mental health professional’s mind– that “psychotics” need neuroleptics, i.e., “anti-psychotics.” In 1993 the APA published their task force report on tardive dyskinesia. They acknowledged that about 65% of those who took neuroleptics for over 25 years had tardive dyskinesia. They described the devastating effects of TD but insisted that “anti-psychotics” were the treatment of choice for “schizophrenia” a supposedly dreadful disease so patients had no choice but to accept TD–a disease with symptoms like Parkinsons.
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Neuroleptics are not like any other drug. As David Cohen (who co-authored a book withy Peter Breggin) wrote in an essay(review of Exstential Psychology and Psychiatry, Vol23, Special Issue):”[N]euroleptics gained favor in 1950s psychiatry because they stupefied agitated inmates of mental hospitals as well as or better than existing treatments.” David shows
that shrinks were looking for a drug that produced a “parkinisoniform state.” This had the unique advantage of making hospitalized “schizophrenics” easy to control. By the end of the 1950s it was accepted by most psychiatrists that in the words of one, “Agents having very few..toxic effects are without action in the psychoses. Their ability to induce an extrapyramidal action is a sine qua non of therapeutic effectiveness.” Living with a disfiguring and disabling movement disorder was considered necessary by the APA in the 90s–and still is. If less “patients” are afflicted by TD today it is because they are on lower dosages–not because atypical neuroleptics do not cause TD and other syndromes.
By the 1960s there was a consensus among psychiatrists that neuroleptics were the treatment of choice for psychotics. Would it not be a coincidence that drugs that were originally valued because they produced a pathological brain state so severe that it made neglected patients in hellish institutions docile actually had unique properties that were good for “psychotics.”? Yes, too much of a coincidence. These drugs are used because psychiatrists have never come to terms with their own history, because most of them do not know what was the difference between psychiatric treatment in the 19th century and in the 20th century. The previous treatment were based on an assault on the body, eg dunking patient in freezing water, putting them in revolving chair. The 20th century treatments were based on attacking the brain directly–ECT,lobotomies, neuroleptics.The 21st century has not changed.
My impression is that Sandra takes an agnostic approach toward neuroleptics. She regards it as one drug among many, with advantages and disadvantages and she allows her patients to make their own decision. But my point is that putting a patient on neuroleptics who is not addicted to neuroleptics(for example a first or second break “psychotic”) is setting her on a course from which there may be no turning back. Every subsequent shrink she sees will continue the treatment convinced by her drug history itself that she is a psychotic. Simply the fact that she is on neuroleptics will be taken as evidence that she has a severe chronic psychosis.
I have been interacting with “schizophrenics” for years. Many get off the drugs right away and
as the activists in the movement show they are among the most creative, aware and socially responsible persons in their communities. I do not believe neuroleptics have any distinctive advantages for someone undergoing “psychosis.” People who are “schizophrenics” are distinctive persons. Their left-brain traits may be less developed than their right-brained. As Laing and Perry have argued a “schizophrenic” episode may be a healing process, if allowed to run its course– it is also a death/rebirth experience characterized in its initial phases by a liminal state, of confusion, of suspension of the cognitive schemata that order experience. This is followed by a rebirth.If a patient is in a state of anxiety or panic it is humane to offer them a “minor tranquilizer.” There is no justification (except in highly exceptional circumstances) for giving a so-called schizophrenics (who has not been taking neuroleptics for years) neuroleptics. These are poisons with no therapeutic value. Psychiatrists who use them are usually I think unaware of their history–they think they have unique “anti-psychotic” properties. Or they think they are like any other “medication.” Or they are unaware that giving them neuroleptics may convince them that they are chronic psychotics. Psychiatrists iuntroduced these neuro-toxic brain diabling poisons into the “mental health” field. They should take responsibility for phasing these poisons out of existence, along with the lobotomy and with electroshock which has made a come-back.
Seth Farber,Ph.D.
http://www.sethHfarber.com
Seth,
In my view we don’t have adequate responses to the requests for help of many who seek relief from experiences they view as destructive in their lives — experiences that psychiatry refers to as hallucinations, delusions and psychosis. Where you and I may agree is that it appears to me increasingly plausible (you require no more convincing) that the relief neuroleptics cause in the short and long term are unscientific in nature. Likewise, because of their quite possibly unscientfic mechanism of action, the effects of neuroleptics (and getting off of them) do not in themselves evidence that the person suffers from any brain dysfunction. This especially if people, for instance, suffer from psychosis when they get off of them yet never were psychotic to begin with (they used it as a sleep aid or to treat non-psychotic depression for example), or if people are psychotic in the first place due to use of hallucinogens such as cannibis and PCP. Additionally, I suspect that, with full information on what we know and don’t know, many would choose not to take neuroleptics at all, ever, on the view that the relief is outweighed by the addictive, metabolic, cognitive, emotional and other problems associated with those drugs. Those people might instead seek relief for their psychosis in other ways, or might try to wait it out (even given the costs and risks of doing so). We also agree I suspect that, at least for some people addicted to neuroleptics, it is unwise to abruptly discontinue taking the drugs due to the withdrawal effects, perhaps caused by supersensitivity psychosis, and it may be the case that these addicts cannot safely get off of the drugs at all (at least not entirely). If this is so, we might also agree, at least in some respects, that there’s a role for the best of the world’s psychiatrists to help people wean off of antipsychotics. You would disagree with my view, however, that it is ethical and wouldn’t amount to medical malpractice were a psychiatrist to prescribe a neuroleptic to a person not already on them. But to me, if that patient is fully informed of all known risks, alternative approaches to treatment, and some basic facts about the limits of medical knowledge in this area (and our hopes to find better treatments, medical and other), and if there is a solemn commitment to try to wean the person off once they’ve been stabilized, the psychiatrist can properly prescribe a neuroleptic to provide the short and long term relief desired.
Where we might disagree more, and this is only a little off-topic, is in relation to other psychiatric drugs. Are you an absolutist on the issue of whether *any* drug currently on the market that are FDA approved for use to treat a DSM-diagnoses and regarding which there has long been a consensus among mainstream medical professionals regarding the safety and efficacy of those drugs for those uses? (No need to preach to the choir about the corruption and limited authoritativeness of the FDA) Let’s take two examples: Lithium and (self-servingly), Lamictal, for their purported use as “mood stabilizers.” Do you think psychiatry’s claims of their benefits and tolerable side-effects is a sham, and a sham to such an extent as to warrant an absolute bar on the use of these drugs on people, whatever their conditions and history? Are there *any* drugs that pass muster, e.g. anti-depressants? This is not a rhetorical question; I value your opinion.
And Seth, in case you do want to reply, I want to be clear that my question is not whether the perceived relief experienced after taking antipsychotics, anti-depressants or mood stabilizers evidences the existence of brain or psychological dysfunction. I also accept that we will likely disagree on whether the experiences referred to in psychiatry as depression and mania are forms of brain psychological dysfunction. The narrow question is that, do you understand that mood stabilizers and antidepressants do not as chemical agents provide *any* beneficial effect, or relief, other than a placebo effect misinterpreted as relief from symptoms caused by the drug. I think I understand your conclusion to be that that the only effects that anti-depressants have on the brain are the harmful side-effects, withdrawal-effects, and the induction of mania, and any depression-lifting benefit is purely a placebo? Is that correct and what about so called mood stabilizers? Is your position absolute that there can be no beneficial effect whatsoever other than placebo for any DSM/FDA approved psychiatric drug?
There are reasons why people may “feel better on the drug” which don’t have to do with simply kidding themselves or desperately seeking the approval of doctors and others who have power over them. We now have a black market in Seroquel in this country, both on the streets and in our prisons. My guesses as to the reasons: first, people are dosed with this stuff both in prison and in the US armed forces as a remedy for agitation and anger, nightmares, insomnia and PTSD. Once you’re on it, it appears to be wicked hard to stop, with “rebound” distress that may be worse than the distress you felt before the Seroquel. I do not know if it can actually cause “rebound” hallucinations or paranoia — maybe Sandra does?
Another reason is that people are living in hellish environments and dealing with hellish things (especially in prison and the army which are both producing people with the constellation of suffering we call PTSD). When you’re going through hell, a pill that lets you sleep 12 hours a day starts to seem awfully attractive.
Finally, I’ve never experienced classical “paranoia” but have watched it from the outside (both in people on coke or PCP and those said to have schizophrenia). It looks like a terrifying experience. I would not judge anyone who took Seroquel or Zyprexa in a crisis of this kind. I just think they need to know that these drugs are like chemotherapy, terribly damaging in the long run, and just as you wouldn’t take toxic chemo drugs a day longer than necessary, you should never let anyone sell you Zyprexa or Seroquel as a long-term solution.
Thank you for posting this. There are no easy answers in all of this.
Hi Johanna,
“Once you’re on it, it appears to be wicked hard to stop, with “rebound” distress that may be worse than the distress you felt before the Seroquel. I do not know if it can actually cause “rebound” hallucinations or paranoia ”
At least if Seroquel is taken in “antipsychotic” doses, say maybe 600 mg – 800 mg, withdrawing from that can cause at least in principle “supersensitivity psychosis” like other neuroleptics (see Seeman, etc). I’ve also observed some people trying to quit Seroquel and I’ve quit it myself too, and I think another thing is that at lower doses, even 25 mg or less, it has a very strong sedating effect, largely from its antihistamine action (similar to Benadryl). Because their bodies have got accustomed to these effects, people may have trouble sleeping without Seroquel, etc. Maybe some people find use for its sedating effects. Anyway, yes, I guess most people don’t find it very pleasurable or addictive in the sense of benzos or opiates, but maybe some people want to use it for its sedating effects.
When my son ended up in psychiatric care he was paranoid and totally out of touch with reality. He was coaxed into taking haloperidol and within 15 minutes he was back to being his real self. Two days later he wanted the psychiatrist to help him off the medication but he refused and my son was forcibly drugged with Risperidone. So my son had to pretend that he was getting better to get out of hospital. Nobody took seriously the side effects he was having either. Getting discharged was the only way of getting off the meds, behind doctors backs of course. He developed all the symptoms of Parkinson’s, hyperprolactinimia, couldn’t stop eating, was permanently dizzy etc. and not one doctor took him seriously, they were saying that he was doing. fine. Nobody inquired where his paranoia came from or discussed it with him. They weren’t interested.
I had been on Zyprexa and Seroquel some years ago. I developed Seroquel Diabetes and Seroquel Acute Pancreattis (lengthy hospital stay). These drugs make me incoherent, scared, akathsia, tardive dyskinesia..horrible side effects the psychiatrist dismissed as worsening mental illness.
The drugs were given to me because my psychiatrist deemed me crazy and changed drugs and doses every visit. To everyone but him saw a drugged obese woman who rambled and couldn’t sit still. These drugs took away my will, my life and make a non ill person sick. I tapered off all my psyche drugs and fought a determined battle with the withdrawals that I won.
I was told by other physicians I’d never been mentally ill and the damage from long term atypical prescribing?? Physically I’ll never be well but my mental clarity is beautiful and the return of drug free calmness is describable.
It will always boggle my mind I was prescribed atypicals and how they caused me great harm. In no way did they help me.
I meant to say “the return of drug free calmness is IN-describable”.
I was chemically raped for twenty five years when I reported to doctors about my
distress stemming from being sexually assaulted and battered for the first 16 years of my life. The coma-like sleep from the drugs was a relief, but like suicide, psych drugs are a permanent “solution” to a temporary problem. My brain was not broken before, but it, and every body system, is sure broken now, by the people who said they were helping me.
I appreciate what you do Sandy, but this is a holocaust and your voice is a whisper in the roaring flames.
I have dealt with psychotic mania that was like paranoid schizophrenia and that was one of few times as a bipolar patient I was compliant with it.
I was looking for documentation on the effect of antipsychotics on dopamine firing. I was given multiple antipsychotic drugs over many years and I was never psychotic. The first was Thorazine. I kept telling them I had an eating disorder and when I said “the drug isn’t working” I meant “It isn’t helping my eating disorder” but since they didn’t recognize that I had ED, refusing to acknowledge that ED was anything that mattered, they had no clue what I was talking about nor how much I was suffering. They only raised the drugs, thinking I was complaining about something vague and psychosomatic. I ended up on three antipsychotic drugs that did not help my eating disorder. They were raised to the highest doses, including Seroquel 900 and other antipsychotics. None of these drugs helped me. I needed to be listened to, not drugged. The side effects were horrific, including bone density loss from Risperdal. When my weight shot up 110 pounds my bones mysteriously healed, I believe because my estrogen must have hit the roof from rapid weight gain from the Seroquel. Then they had the nerve to tell me I never had bone loss since somehow they ” misplaced” the old records. They couldn’t deny that I had broken my leg, though.
I lost all that weight and then some. I kept wondering about what taking all those antipsychotics would do to me long-term. I have heard your dopamine can get badly screwed up because your brain is signaled to overproduce it. So maybe that is why I couldn’t sleep all the sudden. Five years of that insomnia, it was bad bad bad. Also, i get hiccups all the time, which is embarrassing and sometimes I choke from the hiccups. I heard that could be dopamine. I just don’t tell anyone about my former life anymore.
34 years slavery to psych…..Lost years. No one should have their life stolen from them like that.
My boyfriend was force-drugged with Clozaril and he’s dead now.
One day, maybe around 1992 or so he said to me, “Jules, maybe I am not mentally ill because I know when I was diagnosed they didn’t take alcohol withdrawal into account. But I learned in AA that what I went through was alcohol withdrawal.”
I know at that time, both of us were very scared to defy our doctors or deny that we had illnesses. It would have angered our families. So we stayed on the drugs. We were stuck being designated patients, but lucky to have each other for many years. I believe it wasn’t just smoking that killed him.
I also see that my siblings expected me to stay a patient forever. Aw, shucks. Did I disappoint them that I didn’t stay stuck in that godawful role? Uh oh, here comes trouble……
Hi Julie,
I identify with your boyfriend. One of the reasons people are so happy to join the AA is because they are immediately surrounded by people who understand them and have their best interests at heart.
The experts on alcohol and alcohol withdrawal are the AA – not the medical profession.
Any heavy drinker can see things and hear things and experience panic, anxiety, strange ideas – when they stop drinking.
A regular and controlled drinker (anyone) can experience lots of ‘symptoms’ six months further down the line.
Alcohol dependency can have no physical symptoms. A controlled and dependent drinker can pass all the health checks – but still appear mad when they stop. And there’s no special rule for what normal drinking is.
So what does AA say about nondrinkers? That was a difficulty I had. I had ED for sure, but no interest in booze whatsoever. I have tried it but just do not like it. I have no interest in a chemically-induced high, certainly not in drinking booze. And yet the stereotype ED is a person who is also alcoholic. But I’m not. And I’m not an obsessed perfectionist, either. So since I didn’t fit that stereotype I guess I got bypassed by the ED crawlers, too. And I never liked benzos, had no interest nor any interest in getting high off of painkillers. I found it easy to quit cigarettes. But damn, I was tempted to starve myself all over again for a very long time. It continued to lure me, like a drug I couldn’t say no to.
Julie,
I don’t know what the AA exactly says about ED. But you’re right it is very common in the AA (among both sexes).
My boyfriend usually told people that alcoholism was different from drug addiction and he was very hesitant to comment when he felt that this was an area where he had no experience. He felt that the mentality was different. I know he felt helpless and frustrated when younger members asked him to help with certain drug addictions and he felt he should hand them to someone else. He said he would rather be honest than go out on a limb. He said the same about ED with me although he was far more helpful to me than he realized. He told me he didn’t want to make incorrect assumptions and I respected that.
Julie,
I used to attend (a lunchtime meeting) in a big city and people from all walks of life used to come, some dressed in expensive suits with briefcases. During this meeting people would acknowledge all kinds of lunacy (beyond anything I’ve heard in a mental hospital).
After the meeting all the professional (attendees) would get up and go back to their banks and law offices as if nothing happened.
(In these settings – I’m deliberately vague)
Fiaschra, in my various attempts at asking MH “professionals” for “help” I would confess to my various crazy things I would do with food or around food or various “tricks” I would do to not eat. This included eating out of garbage containers, or eating rat-infested food or eating things that by all means were not food. When I read about a famous guy a long time ago who apparently ate rats and cats alive, I was not surprised. They said he would eat anything and seemed to not be able to control his urges. Apparently finally they decided he had brain damage, but never figured it out. I was very scared of stomach rupture, since these things can happen and often after you die it’s mistaken for a heart attack. I was so afraid of dying like that and no one ever finding out what I really suffered from. I knew so many suffered in silence and our voices went unheard, that we showed up in emergency rooms and were told our complaints were trivial. I was even told it was “impossible” to eat what I had eaten, and one doctor told me he’d send his kid to an ER if he ate what I ate. Hey doc, where do you think I am? No one heard, no one cared, no one listened. Following their advice only made me worse, and being weight-monitored was like a strait-jacket for me. Getting away from therapy was the only way I could survive, and following my own instincts ended up the right thing for me. The biggest crime they do to young people is to tell them their bodies are lying to them. Geez. That turns them into permanent dependent patients.