This sounds like a weird question – everyone knows that psychosis is often very disabling, and antipsychotic drugs are widely recognized for their effects in reducing psychosis in at least most people, and most often taking effect in just a few days. And when people become psychotic again, it’s often understood that it’s because they “weren’t taking their meds.”
But what if it’s trickier than that? What if “antipsychotic” drugs make things better in the short term, but make long term problems worse? How would we even know?
In a recent letter to the Psychiatric Times, psychiatrist Sandy Steingard outlined some of the ways we can know that there definitely is a problem with the long term use of antipsychotics. (Note that while she addressed a limited number of studies, that’s just because there actually are very few studies which look at really long term outcomes.)
She started her letter by writing about the Wunderink study, which found dramatically higher rates of recovery among the group that had been randomly selected 7 years earlier to receive a trial in getting off antipsychotic drugs, compared to those maintained on the drugs as usual.
It should be stated that the results of the Wunderink study are not perfectly clear in all respects. For example, of the members of the group that guided discontinuation of the drugs, most had resumed taking at least some drugs over time, though the dosages on average were much smaller than those of the “treatment as usual” group. So some have argued that the positive effects might have come from lower than average doses, and they argue that the study should not be taken to indicate that any use of drugs is detrimental long term.
But Sandy brought up more evidence, and the case against long term use of antipsychotics became more convincing as she continued.
She then discussed the Northwick Park study, where people were randomized to receive either antipsychotics or placebo over a 2 year period. While members of the group on placebo was more likely to relapse into psychosis, they were also more likely to be employed.
And in case you are thinking that it might be worthwhile to have drugs interfere with employability if the tradeoff is reduced relapse, consider that the Wunderink study found that while those taking less drugs were more likely to relapse in the first two years, they were actually less likely to relapse in following years, such that there was no advantage to taking more drugs in forestalling relapse overall.
Then Sandy described a study done by Gleeson and colleagues which attempted to see if helping people “adhere” better to taking medications as prescribed would help people have better outcomes. In the first year, better adherence to drugs seemed to be helping reduce relapse, but after 30 months, overall relapse rates were similar in both groups, while those doing better at taking their drugs were less likely to be working, in other words, they were more disabled.
Finally, Sandy described what is possibly the most damming evidence of all. This evidence comes from a 20 year outcome study done by Harrow and colleagues. It’s a naturalistic study, which means it just follows what people did, so some have argued that the much superior outcomes for those that those who came off drugs during the study period were achieved because these were the people who had recovered, rather than being because the drugs themselves impaired recovery.
But one way to sort out which is which is to look at one came first, the recovery or quitting the drugs. To do this, we can compare those who stayed on drugs over the 20 year period, with those who got off drugs within 2 years and then stayed off them. Here’s Sandy’s summary on that:
At 2 years, 74% of individuals in group 1 [those who stayed on drugs over the whole period] had psychotic symptoms, as did 60% of those in group 3 [the group that quit drugs by 2 years and stayed off]. Although these differences are not statistically significant, the lines diverge at year 4.5 and continue to diverge over the next 15 years. At 4.5 years, 86% of group 1 have psychotic symptoms compared with 21% of group 3. By year 20, the difference is 68% compared with 8%.
68% with psychotic symptoms when staying on drugs compared with 8% psychotic symptoms for those who quit drugs (that are called “antipsychotic”) – that’s about exactly the opposite of what the public has been led to expect! But it’s precisely what we might expect if these drugs impair recovery from psychosis rather than promote it.
So where does that leave us?
Some psychiatrists who are aware of these studies, such as Torrey and Pierre, attempt to defend the drugs by maintaining that while some people can do well by getting off the drugs, others “clearly” benefit from continuing to take them long term.
My question is, how exactly can anyone, psychiatrist or not, know that a medication is “clearly” offering a long term benefit to a particular individual, when we can’t compare the person’s actual history with what would have happened to them had they gotten off the medications?
It seems to me that the closest we can do is to compare groups of people who get off or who are assisted in getting off medications, with people who stay on medications, and see who does better. As outlined above, this kind of evidence strongly suggests, even though it doesn’t absolutely prove, that staying on medications is likely unhelpful compared to getting off.
Of course it remains possible that medications are of benefit to some people in the long run, it’s just that this is not at all clear, and the appearance of clarity can be achieved only by ignoring the facts. This kind of ignoring is unfortunately all too common, perhaps because it is very disquieting for mental health professionals to consider the possibility that in most or possibly even in all cases, long term antipsychotic drug use is more damaging than helpful.
People often think it is “proven” that a particular individual needs to stay on antipsychotic drugs when that individual makes a number of attempts to get off and each attempt results in a relapse. But this in fact is not such proof. I know one person who reported about 20 such attempts before she got off successfully, and while that number is a bit high, many others also have stories of a string of failures before success. If we quit being sure this was impossible, we might put more energy into helping people succeed in getting off drugs and having a better chance at recovery.
The state of mind we call psychosis is often scary and even destructive, and it makes sense to believe that when nothing else seems to work, it may be helpful to reach for the kinds of drugs we call “antipsychotic, at least for awhile. But if we take the long term studies seriously, I think we will work hard wherever possible to find ways of helping that don’t involve using these drugs, and when they are used, we will then work hard to support people in attempting to come off them safely.
Such efforts may not always succeed, but I believe both disability and long term psychosis could be reduced dramatically if we also very dramatically reduce use of the so-called “antipsychotics.”
In other words, yes it is sometimes risky to avoid using “antipsychotics” or to come off once on them, and sometimes and in certain situations starting to use or staying on them may be better than not, but we have to balance the risks of not using them with the risks of using or continuing to use them, and we are starting to see that those risks can be extremely high. It’s not just the risk of “side” effects, things like weight gain and diabetes and permanent movement disorders and/or akathisia, but it’s also a likely increase in the very things the drugs were meant to reduce, the disability and the psychosis.
Discussion about this issue needs to happen throughout our mental health system, so that people can start to make informed choices. Writing this column is one way I’m trying to get the dialogue going: what steps will you take? I’d love to see your ideas in the comment section . . .
* * * * *
This article first appeared on Ron Unger’s blog,
Recovery From Schizophrenia and Other Psychotic Disorders
Ron I very much agree with your statement
‘….. I believe both disability and long term psychosis could be reduced dramatically if we also very dramatically reduce use of the so-called “antipsychotics.”’
There is too much pressure to continue on “antipsychotics” and I think this is driven by fear that a person will become “unwell” once off them. In the UK there is pressure to take “antipsychotics” for two years continuously following an episode of psychosis. I ask myself what good evidence there is for such an approach and can’t really see anything compelling. I bet when people reach the two year mark and then try to taper of an “antipsychotic” it is very difficult to get to zero drugs, I bet most people are persuaded to remain on the drugs.
I think the best approach, at least when looking at a first episode of psychosis, it to avoid neuroleptic drugs if at all possible and if they are used to use in lower doses than usual and as soon as a person is no longer psychotic to look at carefully withdrawing the antipsychotic drug (if one was used). We should reframe how they are used and be fearful of long term use of them.
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I agree with you. I’d just add that maybe using the anti-psychotic in the first place is ill adviced in many cases (in some cases when a person is really frightened and does crazy dangerous things it may make sense) and it should first involve a Open Dialogue like approach with no drugs. Also the doses prescribed should be much lower – I don’t think there is any evidence that upping the dose of a drug which is not working is doing anything more than reducing the person to a vegetative state.
Btw, I’ve read the response by Torrey the the article and it was ridiculous. The “funniest” part is when he tells how people decided to go off drugs against his advice and ended up committing suicide or getting killed. Taking aside the “anecdotal evidence” problem he doesn’t mention that they would taper of the drugs slowly and makes me believe that they went cold turkey and that’s what you get. But I guess he denies the existence of a withdrawal effect (which can be seen even after a single dose – every time I took a single and very low dose of Zyprexa I was “unstable” for 1 to 2 weeks). This guy is amazing. I’d risk saying delusional ;).
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I would like to add that a dramatic reduction of “antipsychotic” drug use could be achieved through working with, and within existing systems, all it needs is the will.
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Hi Robb3, I agree with all your ideas, with the exception of the last one. I think existing systems would have to be reformed quite a bit to do things like make a strong effort to help people with psychosis without medication.
Our psych hospitals for example are organized around the idea that it isn’t really necessary to relate that much with the person experiencing psychosis, rather, the idea is to just kind of watch them as they get large quantities of drugs put into them, and then notice when they are “stable.” Lots would have to change to make these hospitals into a place where people felt connected with in a good and healing way.
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Hey Ron- I agree a lot would have to change- but as someone who works in a hospital setting I have seen drug prescribing habits change. There has been a strong movement away from prescribing opiates and now there is movement away from prescribing benzos (though this is sadly being replaced by antipsychotics).
I don’t think its an enormous leap to shift towards a very low or no dose model, or intermittent model of prescribing for people going through initial episodes of psychosis. As these studies are indeed showing long term harm for long term use of antipsychotics, it would indeed be best practice and evidence based to try and limit their use, especially in the beginning when someone is not habituated to them.
Once someone is habituated to antipsychotics, it can become extremely hard to shift gears. In the hospital I work in, I see many people return over and over again after they have stopped their meds cold turkey. Thats not the best time to try and taper a person off…and they likely need to start the drugs again so they don’t have horrendous withdrawal effects.
The time to be extremely cautious with these drugs is in the beginning. If we can shift to a very cautious approach with people who are just starting to experience psychosis, then we may not create entire generations of folks dependent on antipsychotics at risk of iatrogenic psychosis when they stop.
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“away from prescribing benzos (though this is sadly being replaced by antipsychotics)”
Oh, wow. That is sort of a discussion between what’s worse for you: lung or kidney cancer? I think also I may have a clue where these trends come about – just check which drugs are still on patent.
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Yeah, when you are taught to consider what people in psychosis are saying as “word salad” and adviced AGAINST listening to them then it’s hardly possible to do anything but to drug them to unconsciousness. And psychiatrists and other staff are given so much power over people that it creates an atmosphere of high security prison or concentration camp so I wonder why it doesn’t work.
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A person doesn’t need to stay on the drugs long term to be disabled by them. The brain damage and subsequent neurological problems are most often, if not always, permanent. Any use of these drugs for any length of time increases the odds that a person will being doing worse off in the future.
I have been mostly off of psych drugs for nearly 20 years now, and am still disabled by involuntary movement disorders.
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Hi Jeffrey, Sorry to hear about the permanent problem you experienced. The possibility of that kind of thing is yet another reason to avoid using these drugs wherever possible.
I don’t think we know precisely how often damage is permanent versus temporary, but we do know permanent problems are not uncommon, and that fact should make our system much more cautious than it is.
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DRUGS “to be disabled by them” that is just the physical effects. The diagnosis that gets someone to be prescribed the drugs is more powerful in my opinion, as the psychiatric diagnosis poisons the relationship between the person-patient and their family and friends. Who are you without your family and friends?
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The Long-Term Use of a psychiatric diagnosis is the problem. Descriptive words written on a piece of paper. A broken leg does not stay broken forever. A broken (analog) watch is correct twice a day, once in the AM and once in the PM. A prejudice that is not explained to the subject.
Psychiatrist ” I think you need help”.
Patient ” I think this is a jail, a jail before I committed any crime.”
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Good point. The psychiatric diagnosis deny anyone who has a mental health issue at any point of their lives can recover. And that is true not only for the most stigmatising labels of schizophrenia or bipolar but also for depression (I’m not even mentioning “personality disorders”). The idea is that you never recover, you only “control the symptoms” so you’re forever suspect. A single few day hospitalisation can ruin your life, especially involuntary one, as it makes you a possible violent and unreliable person not worth of being able to adopt kids, possess a firearm, serve in military/police etc. – the list goes on. That is not true for any other condition and stems solely from the “broken brain” idea ignoring the fact that many people get out of their problems and recover long term.
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my research and my (husband’s) horrific experience lets me simply know this: if you think it’s ok to take street drugs or drink alcohol to cure what ails you then go ahead and take a legal psychotropic prescription drug. if you agree it would be unwise to turn to street drugs or alcohol then you must never take a prescription drug either. there is no difference. the legal drugs will not cure anything. they might make you feel better temporarily, but so do illegal drugs and alcohol. no drugs will ever, ever cure whatever plagues your mind nad keeps you from living your full life.
every human has the power to put his mind in a comfortable, settled place. the power is in his mind and body- never on a prescription pad, never in a pharmacy, never on a street corner. period.
once a person wakes up to this undeniable truth the healing will begin. regulars on MIA know we as a society have been bamboozled . everyone who knows the truth please, plesae pass it on.
happy labor day. all
erin
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Thanks, Ron!
My response in Psychiatric Times was limited by word count. I have written more on this for anyone interested in my blogs here.
http://www.madinamerica.com/2014/03/neurolpetics-anti-psychotic20-year-follow/
http://www.madinamerica.com/2013/09/taking-anti-psychotics-psychotic/
http://www.madinamerica.com/2013/04/optimla-use-of-neuroleptics-part-3-duration-of-untreated-psychosis/
http://www.madinamerica.com/2013/04/optimal-use-of-neuroleptic-drugs-finale/
http://www.madinamerica.com/2013/03/optimal-use-of-neuroleptic-drugs-part-2/
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Thanks Sandy, for referencing all your other great posts! I did think your letter was especially important, maybe because that word limit made you boil your points down into an incredibly succinct argument.
I actually wrote this post for my blog, so people who just read that would be exposed to your ideas, and wasn’t sure it was worth posting on MIA, since you had already covered the subject pretty well. Kermit though thought it should be posted here, because it is such a key topic. Scary, but so important.
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Thanks for the references to your great blogs here, all of which I have read. However, I would like to be able to give a succinct summary to my daughter’s treating psychiatrist, and a letter limited by word count would be very helpful. Unfortunately I can’t seem to get it at Psychiatric Times. It requires membership, which is free, but the website is not permitting me to register.
Would you be able to post a copy of that letter here?
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Thanks. This blog – which I did not link above- overlaps substantially with the Psychiatric Times letter.
http://www.madinamerica.com/2013/07/a-paradox-revealed-again/
If that is not adequate, e-mail me via MIA and I can send you the letter.
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Thanks for your articles, Ron and Sandy. I was put on an antipsychotic, with no prior mental health issues and no psychosis. (I was suffering the common withdrawal effects of odd dreams, increased libido, and brain zaps from Wellbutrin, given for smoking cessation). I was immediately put on Risperdal.
Two weeks after being put on Risperdal, I suffered from a terrifying psychosis. The antipsychotics can CAUSE psychosis even in the short run, when given to non-psychotic people.
I bring this up because antipsychotics are now being given out willy nilly to lots of children (and no doubt adults) for behavioral problems and reasons other than psychosis. There is medical literature from as far back as 50 years ago pointing out that antipsychotics can cause psychosis in healthy people, but all the doctors I dealt with adamantly denied that the antipsychotics could cause psychosis. Attempted murder with major drug interaction laden cocktails was their solution to covering up this adverse reaction to Risperdal. But from reading lots of patient comments, it seems this appallingly unethical behavior is what the psychiatrists are doing to all the people made sick by their drugs.
The antipsychotics are the same class of drugs the Russian dissidents claimed were torture drugs. The United Nations states “forced psychiatric treatment is torture.”
The antipsychotics are torture drugs, I pray some day the psychiatrists get to the point they can mental comprehend that forcing torture drugs onto other human beings is NOT “appropriate medical care.”
And as to withdrawal from antipsychotics, the antipsychotics do cause withdrawal induced super sensitivity manic psychosis. But one can heal from this, so long as the doctors don’t call this a “return of symptoms,” which is what most doctors ignorantly claim. Remember, my original “symptom” was a desire to quit smoking, not psychosis.
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Hi Someone Else,
The points you make are extremely important. While lots of people experience less psychosis in the short term as a result of the drugs, and only have the drugs lead to more psychosis is the long term, others like yourself experience a beginning of psychosis or increased psychosis right away.
I know a young woman also put on antipsychotics for reasons other than being psychotic, who then while on the drugs started seeing, hearing, and feeling physically touched by dead people!
Unfortunately as you suggest, too many psychiatrists are only familiar with the typical response to drugs, and don’t consider that there are always some people who respond in atypical ways that may be completely the opposite.
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Given the noncompliance rates with antipsychotics, I’m not certain it’s uncommon that they have both severe short and long run adverse effects on most people. But absolutely the psychiatrists do everything in their power to cover up their “Foul ups” with their antipsychotics.
How insane it was to deal with completely hypocritical doctors, who’d promised to do no harm, but were actually so hellbent on covering up adverse effects of their “new wonder drugs” that they’d actually poison a patient with massive major drug interaction laden cocktails, while rationalizing that trying to murder a patient was acceptable by writing in their medical records that a woman who in reality has an IQ in the boarder line genius range, whose supposed to be a “judge” according to 40 hours of unbiased psychological career testing, is “w/o content, work, and talent.”
Truly, some of the psychiatrists, psychologists, and mainstream medical doctors are complete psychopaths. Although in my case, all my doctors had their own greedy little motives for trying to kill me. I didn’t realize that two of the functions of the psychiatric industry were covering up easily recognized iatrogenesis for the incompetent doctors and child abuse for the religions.
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What if psychosis was never really treated w/ antipsychotics, and the drugs just severed connections in the brain, leaving people with less of their memory, less function, less chance for any part of a so called voice or report of psychosis to make it through the brain. The damage being done makes people a new type of psychotic, unable to tell who they are, unable to communicate, defend themselves, they become zombies with the body and voice of the old person but the old personality is wiped out. Their reliability and executive function gone, but they won’t ever admit/realize it and we won’t call em out for fear of calling out a dead moose with family that might defend him. They share some memory too, but aren’t the same person, making people unable to tell he’s been affected. Over time the damage gets real bad, and drugs don’t have effect, and new illnesses from this chemical damage emerge. The person dies 25 years early.. We know that severing the connections does not stop a voice or delusion from trying to get through, it doesn’t correct any brain function. Tell me why we consider this “effective” even in short term.. We don’t even measure this damage or include the long term disability in measuring effectiveness. We also don’t expect peoples brains to actually functionally improve or grow, or get better like a plant does from water and nourishment after planting
.. http://www.OregonStateHospital.net/resources.html
Once a patient gets full blown encephalopathy and dementia from it we don’t even acknowledge it. We don’t call is tardive dysphrenia, or dyskinisia, we call it worsening schizophrenia or schizoaffective.. We don’t even call it a complication from the drug, and no mention is made on the Axis in chart notes.
We also cause peoples diagnosis and symptoms to spiral out of control leading to new diagnosis of worsening conditions. We create bipolar people, chronic depressives, borderline personality disorder, and schizophrenics in people and never acknowledge it.
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We do know that major tranquilizers only have an affect because 80% or greater of connections are severed through blockade on various pathways, normally dopamine. This prevents nerve communication and thoughts, memories, voices, delusions, emotions, and other things are erased or blocked. Dr. Grace E Jackson put that in the affidavit psychrights has for people to use in defense of forced drugging. Now that is a chemical lobotomy by definition, getting rid of brain, getting rid of problem.. Other drugs work similarly by knocking out functionality of nerve pathways and receptors.
Dr. Jackson’s affidavit is on my site that I previously mentioned ..
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Good points Todd,
Ever wonder where the term “shrink” came from?
Reduce mass and volume of brain matter until symptoms disappear.
Shrink – become or make smaller in size or amount.
Time honoured tradition, developing new methods of achieving this end on a daily basis.
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There’s a reason why these drugs are also called “chemical lobotomisers” (btw, I didn’t make that up – it was spelled out by the deal of medical faculty during a neurobiology lecture on psychosis). Since this guy is kind of top of his field I don’t think he just made it up.
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“borderline personality disorder”
One of diagnosis I got while in the process of “finding the right combination”. I had a major breakdown within the first week on the drug and went totally berserk for another 1,5yrs on and off various drugs. It probably was not all the drug effects since I had some major issues due to a very toxic relationship (t got me to take the drugs in the first place) but they certainly made it really bad. Even my toxic buddy at some point told me I should not take drugs because they make me crazy and noticed that it’s enough for me to take a single small dose of Zyprexa to be totally out of my mind and suicidal for at least a week after. And that only in addition to practical narcolepsy, binge eating and restless leg syndrome. Quite a feat for one drug. So even short term use of these drugs can be dangerous.
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The fact that disability rates in Europe and the US have sky-rocketed with the over use of these drugs suggests the very point that you are making in this article. I was “treated” for being high on amphetamines and was disabled by the treatment. There is no way I could work when I needed to sleep until 2:00PM and go to bed at 10:00PM every day. I needed those 8 hours awake to eat and nap. This speaks nothing of the horrific subjective experience of despair that I felt during my 8 hour day.
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Zyprexa: single low dose – 10-15 minutes after taking the drug a major attack of horrible hunger and binge eating then within 1/2h from taking the drug extreme sleepiness or narcolepsy (I fell asleep while riding a bike in the middle of a busy street – no kidding: dismissed by my shrink as: “well, it says in the side effects that you may become a bit sleepy”) followed by at least 10hrs of dead like sleep and terrible tiredness and felling heavy as well as reduced mental and cognitive abilities for at least a day after. Followed by at least a week of withdrawal effect – the exact opposite of what the drug does (hyperactivity, hypersensitivity, anxiety, general “being emotionally unbalanced” and at times suicidality).
Single very low dose.
I don’t want to imagine what happens when people are on this S**t for months and years.
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Excellent piece Ron, and thanks much to Sandy for elucidating these studies. I have o agree with Robb3 that I think the best approach would be to avoid starting antipsychotics at all if possible. We too easily jump to starting people on these drugs if there is a hint of psychosis. I believe it is quite possible that people will go through a period of instability and periodic psychosis that may naturally run its course. During extreme states it may be wise to offer the intermittent use of psych drugs as calmative and hypnotic agents…but it’s when we get into the long term use of these drugs…all of them…that we run into trouble.
I also think we could app,y the “intermittent dose” idea within the existing mental health framework. Why start people on heavy neuroleptics and cocktails when they are hospitalized? Mainly it’s due to fear of violence or to encourage rest and sleep. But this first step of heavy tranquilizer ion sets up a very difficult road if the person wants to later come off the drugs.
For those in long term treatment, these studies show it makes strong sense to avoid long term usage. However, this can be extremely difficult to do for many folks…and the withdrawal off antipsychotics can engender destabilization and psychosis.
I think we need to be much more adept at encouraging doctors to taper folks off antipsychotics in the shortest time possible and to develop tools and supports for people going through that process. At the same time, I want to honor that there are many people on antipsychotics who feel the risk of tapering off them is just too great and they wish to remain on them. Because of the strong risk of tapering, it would be smarter to not start regular use in the first place.
Thanks Ron and Sandy!
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” think the best approach would be to avoid starting antipsychotics at all if possible.”
I totally agree. But don’t forget about the egregious practice to prescribe these drugs off label to treat such things as anxiety (as so-called “mood stabilizers – happened to me).
I even asked the shrink why the hell was he prescribing me an anti-psychotic when I was not psychotic. “It’s going to make you more calm”. “But I don’t want to be calm, that’s not my problem. I just want to feel better not calmer, that’s not the same” – that part got ignored.
These drugs are used as tranqualisers on both psychotic and every other kind of “mental patients”. Given the side effects and things described in this article, especially the horrific withdrawal (and I had some effects after taking a single low dose lasting for about a week which was repeatable every time I took the drug) these drugs should almost never be prescribed. especially as a first line of treatment or long-term (and by long I mean more than a week – if they don’t “help” you by then then they probably won’t “help” at all and by “help” I mean mostly sedation if that’s what you need).
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I am sorry to hear about your permanent movement disorders, Jeffrey. I developed terrible stiffness early on and notice the newer drugs are even worse.
It is hard to believe a group of “doctors” actually ignores physical disability and pain that they daily create. But they do. They document it as though that were the solution. I stopped complaining when it became clear that the further solution would be another pill, this one for side effects.
I will always be crazy. I am an imaginative person who also believes in God. I am doomed from the outset. So call me crazy, but this psychiatric hoax is killing people with physical disability.
I suspect that part of the reason psychiatrists get away with this is that they concentrate on young people, a group who can tolerate physical assault for longer periods. Also, everyone knows young people are crazy, and they go on living almost proud of the fact.
But, make no mistake, these drugs are physically lethal. The fact that they do nothing much except tranquilize in terms of “craziness” and induce more cooperation because patients want to escape “treatment” should not blind us to the physical toll they are taking. These young people also are being damaged. Many will not be old.
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anothervoice,
“I stopped complaining when it became clear the further solution would be another pill.” I, too, realized within a fairly short time that if you tell a psychiatrist his drugs are making you sick, he just adds more, or switches them. So you realize pretty quickly that the trick to getting weaned off drugs by a psychiatrist is to lie, and say you’re getting better, even if you’re sicker than a dog because you’re on six drugs, all that I now know have major drug interaction warnings. Why is it legal for doctors to poison people?
It’s sad the psychiatric industry is so deluded by the pharmaceutical industry, and their own leaders, and so staggeringly greedy and disrespectful of their patients, that they aren’t even capable of understanding the words, “your drugs are making me sick,” means take the patient off the drugs.
And, as a fellow believer in God, you may get a kick out of this. According to my medical records, the “delusions” psychiatric practitioners claimed I had were belief in the Holy Spirit and God. However, since I live in the US, and we supposedly have freedom of religion in this country, force medicating and torturing people for belief in God and the Holy Spirit is technically illegal. Apparently the psychiatric industry has delusions that antipsychotics “cure” belief in God, they don’t. The wisdom in His bible, trumps the psychiatrist’s stigmatization “bible,” any day.
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I would argue that the opposite is true someonelse.
That when a person is forsaken by their community, family and friends, incarcerated and tortured, the only thing left to them is to turn to God for help. That the lie one needs to tell the psychiatrist is that you no longer believe in a God, and at that point the medications are seen to be effective.
I just loved Paul Newman in Coll Hand Luke.
“I got my head right Boss”
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Oh, boans, you misunderstood me. I agree with what you’re saying. If you tell psychiatrists you believe in God, they drug you. But that’s illegal in the US.
chrisreed, you’re right. Never discuss anything of a spiritual nature with psychiatrists, nothing philosophic, nothing creative, and maybe even nothing more complicated than “all real life problems are caused by chemical imbalances in people’s brains.” At least the psychiatrists I dealt with didn’t seem to be able to think outside that box.
What was kind of odd, however, was (according to all my medical records) after 15 different toxic drugs cocktails mandated for the “delusion” of belief in the Holy Spirit and God, and forced treatment with God knows what actual drug (something that made my heart feel like it was going to stop, supposedly Ciprofloxacin) for a medically provable non-existent UTI, a social worker gave me a bible and told me I should be a Christian. Go figure.
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Hi Someone Else,
I really love your instructions about what to talk about with psychiatrists: “Never discuss anything of a spiritual nature with psychiatrists, nothing philosophic, nothing creative, and maybe even nothing more complicated than “all real life problems are caused by chemical imbalances in people’s brains.” ”
I think the problem you are getting at comes not from the average psychiatrist being stupid, but rather they’ve seem people experimenting with being so far outside the box, in ways that often cause severe problems for themselves and others, that they see their job as re-imposing the box on people’s thinking in order to avoid further problems, and in their short appointments they are looking for any evidence that the box is not completely intact, in case they might need to do something, prescribe more drugs etc.
Of course that whole way of operating ignores the fact that we need people thinking and experiencing outside the box, and that real recovery doesn’t mean giving up ever doing it but means learning how to be a bit safer while doing it, getting the right kinds of support in doing it, etc.
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…I think the problem you are getting at comes not from the average psychiatrist being stupid,
They are not stupid, its just that they last street smarts and common sense. Remember the nerds in high school who sat at the front of the class, got straight A’s on their report cards, aced the SAT’s but could never get a date? These are the folks who by and large become shrinks.
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“Oh, boans, you misunderstood me. I agree with what you’re saying. If you tell psychiatrists you believe in God, they drug you. But that’s illegal in the US. ”
Realised after I had posted Someone Else. See my error now.
I know that here in Australia if you don’t believe that the psychiatrist is God, that’s when they drug you. So a belief in God is fine, as long as it’s the one sitting in front of you lol.
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Well, no topic is safe really. I tried to discuss my diagnosis or ask them questions about the drugs and what they really did and was labelled as oppositional and narcissistic. It’s catch 22 really.
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Several times while in Psych lockup, someone asked me if I was religious? Some how that didn’t strike me as an innocent question.
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That’s weird, they always had my religious affiliation on file.
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“I, too, realized within a fairly short time that if you tell a psychiatrist his drugs are making you sick, he just adds more, or switches them.”
Yeah, that’s how it works almost 100% of the time. It was only once or twice that they person told me that drugs are probably not the answer (after trying like 10 of them) and I think mostly because I was a pain in the a** in other ways.
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“I developed terrible stiffness early on and notice the newer drugs are even worse.”
Could you describe it more? I suffer from some chronic pain problems which seems like nobody can diagnose and they are related to feeling of stiffness.
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I was given Zyprexa for anxiety and insomnia and when I got tired of being a zombie and quit the stuff the withdrawals sent me into a frightening psychosis I never ever had before taking it.
That’s proof to me at least in the case of Zyprexa that anti psychotics cause psychosis.
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Also I will never forget when I went to the ER complaining of these horrible withdrawals that also included nausea , vomiting , panic attacks and insomnia from hell the ER nurse came to me and said “the doctor can write you more Zyprexa if we ask him nicely”. Great ask him nicely. Please sir, can I have more of the stuff that made me this sick in the first place ?
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Absolutely, Copycat, one of the withdrawal effects of the antipsychotics is psychosis. Withdrawal from antipsychotics CAUSES psychosis, even if there was zero psychosis prior to being drugged. The psychiatric industry really does need to learn this.
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That is simply because the brain adjust to having it’s dopamine system blocked and produces more signalling. Then you take a drug away and you have an overhaul. that’s also why these drugs don’t work in the long term – the brain adjusts and in the end they may be more psychotic than ever.
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Copy cat: I have been having trouble titrating from Zyprexa. I was down to around 1.5 mg but had to go back up to 2.5 mg the last couple of nights. With stress from work I find that I was waking up during the night and having trouble getting back to sleep. May I ask how high your Zyprexa dosage was.
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I was at 10mg , I got off all of it and went on Ativan for the evil Zyprexa withdrawals and then became dependent on them and clonopin and had to do nasty but not as bad withdrawal from that. Zyprexa withdrawal is benzo withdrawal.
Zyprexa should be banned.
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“Zyprexa should be banned.”
Yeah, Zyprexa is vicious.
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Btw, try checking your blood iron levels and if they are low (below the norm or close to lower limit) try supplementing. It helped me (basically cured me) from Zyprexa induced RLS and it may also help with other withdrawal symptoms. Iron is important among others, for dopamine signalling and that is what Zyprexa screws up. If you’re a vegetarian or have eaten little because of stress you’re particularly vulnerable.
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MIA posters all know too well the dangers of neuroleptics. Being “treatment resistant when on antidepressants” get antipsychotics added to the drug mix. I still wonder why the prescribing psychiatrist haven’t a clue linking these drugs to numerous physical aliments and seem stymied when their patients become sicker and more disabled? Are they truly that blind? When I mentioned my sudden changed behavior on psych drug cocktails to the pdoc he added more drugs saying it was “me”. Once I stopped the drugs my odd behavior was no more and I am so grateful every time I think of this.
Are any of the MIA posters sending this info on to their psychiatrists to read ?? To hopefully have alight bulb go on in their clouded heads?
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I’ve emailed hundreds of medical journal articles pointing out the adverse effects of antidepressants and antipsychotics to my former neurologist. Although he’s such a delusional psychopath, I’m sure he’s still brain damaging as many little children as he can get his greedy little hands on. But at least he knows full well that he’s creating “mental illnesses” in his patients for profit.
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Hey, have you all googled your former or current psychiatrist’s and doctor’s names, and warned other patients of the toxic nature of the psychiatric drugs on the sites that accept patient surveys of medical treatment? That might help to get the word out to others, before they are harmed.
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You could even recommend Whitaker’s (or Breggin’s or others) books to everyone considering psychiatric care on these websites designed for the doctors. If all of us did it with all our former doctors, it might help get the word out.
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http://www.askapatient.com/ is a good site where people who have been subjected to these drugs write about their experience.
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Yeah. And they happily ignore you writing you off as a crazy person who avoids treatment. and a conspiracy theorist. Sending them original research papers from peer reviewed journals does not seem to change the attitude. They just know better.
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hi, aria. my husband (the person in our family who fell for the lies and led our family on a years-long trek to hell) is definitely planning on going back to all the “professionals” who diagnosed and drugged and rediagnosed and redrugged him to show them the truth of what they did. he’s just waiting to be in the know and drug-free long enough so that they will not see his being himself again, finally, as a blip but as a result of dropping all their lies and labels and drugs… if everyone harmed presented the truth to their doctors, wouldn’t soem of them, at least, change their tune even a bit? like you said, are they really that blind??
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erin321,
My prescribing psychiatrist actually broke down in tears saying he was sorry, how wrong he’d been, but by the time I left his office he’d contacted his attorney. He did his best to discredit me to others by saying he’d treated me for a serious mental illness even through other psychiatrists later said I’d never been mentally ill. Talk about heaping dirt over a hurt, he feared for his medical license. What can we do to change a wrong diagnosis that will follow us and impact future medical treatment? I sometimes feel like Hester wearing a scarlet letter. Good for your husband wanting to show them how wrong they were.
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Yes Erin, I’m afraid they are. Blind faith. Belief in a doctrine based on conviction rather than proof. Psychiatry is a church and antipsychotics are the existence of god. If you accept that god exists you can join in whatever other benefits membership of the church may offer. If you don’t believe and sneak away quietly you are banished to a life in the wilderness. Well done you. If you are stupid enough to challenge ‘his’ existence you are subjected to public flogging and trial by ordeal and your children will be abused by the clergy. The only reason survivors of flogging and trial by ordeal are not burned at the stake is that it would attract too much attention and the church would be found out. If your children die at the hands of the clergy its because you were a non believer.
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PS In the UK the donations plate gets passed round every January 31st. They prefer to call it a tax return.
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good analogy, angry dad. it is almost like the mds are the all-knowing gods and we challengers are cast aside. all the proof is crystal clear to my somewhat intelligent mind, yet when i try to explain to others, to “convert” others, they treat me like i don’y know waht i’m talking about. trying desperately to get my close realtive off the nonsense adhd “cocaine” he’s been taking for years and his parents just refuse to acknowledge the truth…
i keep trying
erin
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Tell them not to be surprised if their son will become “bipolar” or “schizophrenic” – ADHD drugs can cause psychosis. It may sound harsh but if they remember it it may help them to realise that it may not be an “underlying condition” but iatrogenic illness and stop that nonsense.
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Btw, the better comparison is amphetamine or meth (in fact some drugs for ADHD are pure amphetamine or methamphetamine, other are chemical analogues). You can read the chemical name on the drug label and challenge them to google it. And look up “side effects” of using meth.
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In the US, the mainstream religions are utilizing psychiatric stigmatization and poisoning to cover up their child abuse. And a pastor was kind enough to confess to me that psychiatrically defaming, discrediting, and drugging clergy sexual abuse victims is the “dirty little secret” way pastors and priests have historically always covered up their child molestations. Now that we all live in the Information Age, however, perhaps that’s no longer the wisest way for the religions to cover up their pedophilia problems?
I think antipsychotics are more like proof of the existence of Satan, than God.
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Yeah. Possible range of responses:
– throwing you out of the office
– claiming “we can’t help everyone and I’m sorry you feel that our treatment was inadequate” or something along these lines – a none apology
– threatening you with a a law suit because you question their professionality
I still think it was worth it but don’t expect miracles.
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…finally some truth in psychiatry…thanks Ron and Sandy!
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Thanks for this post, Ron. One of the steps I’m taking is educating MH professionals about traumagenic psychosis. One study (J.Read) I’ve read indicates that up to 85% of psychotic episodes are attributable to past traumatic exposures.
That we’ve been blinded to such an obvious link for so long, is an indication of how the medical model/brain disease dominates. Once people begin to consider the role of trauma in precipitating severe emotional distress – the more they may have to reconsider the chemical imbalance/illness explanation.
How is Zyprexa supposed to heal the impacts of trauma? Trauma informed care may prove to be an important lever in dislodging reductionistic psychiatry.
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I wasn’t able to find a mainstream doctor or psychiatrist for years who was able to understand “concerns of child abuse are not cured with antipsychotics,” even after the medical evidence of the abuse had been handed over. But I was able to find an oral surgeon who understood that, thankfully. And quoting my oral surgeon was what embarrassed my last psychiatrist enough to wean me off an antipsychotic that I’d been telling him for over a year made me sick.
Trust me, neither Zyprexa nor Geodon nor Risperdal nor Seroquel nor any of the antipsychotics or psychotropics “cure” people from real life traumatic experiences. How odd all the psychiatrists believe they do. But I guess keeping the child molesters on the streets raping more and more children does bring in a lot of business for the psychiatric practitioners. It also results in a lot of child suicides in one’s neighborhood high school, however.
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Come on, you’re only maladjusted to the society and have a genetic deficiency in dealing with “normal life stresses”…
“It is no measure of health to be well adjusted to a profoundly sick society.” Krishnamurti
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10 years since my onset of
Schiz
At 26
Used to be schizophrenic
Upgraded recently to
“schizoaffective”
No medication but
Just depacote, I needed it to sleep after 3 weeks when I first
Went Away
I was too terrified to sleep, because I thought “knew” I needed to hold the thread of my mind, before it blew me away forever. No sleep for 3 weeks, until…
The depacote.
I transitioned off depacote with Valerian/chamomile tea. After 2 weeks. Sucked on those tea bags like a baby bottle.
That’s it. Since 2003 the psychosis has never stopped, I lost my ability to work recently.
I’m steadily regaining it.
It makes you
Strong if you survive it.
The world unfolds in so much beauty and meaning
It will blind you if you look
Too long
Like the fire
In repo man’s trunk
Behind the madness and
Mirror Masks
Psychosis is…
Trauma
On Fire
Dangerous
Sharks live there
In your mind…
You have to make friends with them
With every molecule of your fear
I am still here.
Do not trust anything that comes in a bottle.
If you do…
Less is More!!
Thank you depacote,
You held my hand
You made it ok to sleep that
Fourth Week
Do what you need to do to stay alive, but please…
Trust the wide green earth.
Exercise like a madwoman.
Eat raw foods.
Get lots of sun.
Sleep.
Take any opportunity you can find to turn the channels in your head down.
So you can keep working.
Only fly when it is safe.
Keep your Delphi
Silent
Until….
It Gets Better.
More Clear.
Stay with your fear,
There is nothing in your mind that can hurt you,
If you refuse to allow it to.
Jung was right.
Sink or swim.
Chop wood and carry water
Be gentle but
Be fearless
Dive or drown.
Choose.
The Gordian Knot
In your mind
The tesseract
Cannot be cut
Just traced
With love
Not for you
For what remains
Peace is possible
Even in madness
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It’s like you say the psychiatrist just doesn’t know but the problem is they act like they do and it’s a powerful influence.
From my understanding, many psychiatrists will simply tell a ‘patient’ that they have a serious condition and will need to be on medication for the rest of their lives. Based on nothing except their ego.
If a ‘patient’ says they are having problems and want to get off drugs, they will be don’t if they don’t keep taking the drugs they have some arbitrarily high percentage chance of an episode. No advice given on the dangers of withdrawing abruptly. It’s simply assumed the patient will do what they’re told, and if they don’t and there’s a problem, well it’s their illness.
None of this is really helpful, none of it reduces anxiety, makes the person feel supported in doing what they can to really get better. Honestly considering the lack of evidence for these illnesses and the harshness of the treatments for them it’s not hard to see how people that go through this stuff get very angry and have no problem labeling the average psychiatrist as a dangerous fraudster.
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Hi barrab,
I agree with you that it is a big problem when psychiatrists convince themselves and others that they know what is going on when they don’t. That’s why I think one of the big innovations of Open Dialogue was just to have the professionals admit they don’t know what is going on up front, instead they say “we don’t know, that’s why we are here to talk about it.” And they always want to hear more than one view about what might possibly be happening.
I do think psychiatrists have a reason to tell people to be on their drugs forever that goes beyond their ego however. What they see over and over again is people who stop their drugs and then end up in a terrible condition. It’s not surprising they think the best way to stop this is just to convince people to never stop the drugs.
I think what we have to communicate is that it’s more complex than that: that part of the problem is that they drugs create a dependency on them, that people have to be educated about coming off slowly and with support, and that there are important long term advantages to getting off the drugs even though it is quite risky in the short term.
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I think Open Dialog has a lot of advantages, like it’s common sense and truthful. But I’d like to mention that I think it’s important, if and when current psychiatric practitioners are trained in this manner, it be stressed that they’ve essentially been (it seems) brainwashed to believe that they’re treating “mental illnesses” in the patients. And they really need to get rid of that belief system. As Wayne mentioned above, “85% of psychotic experiences are attributable to past traumatic experiences,” this means you’re not treating a “mental illness” in the patient, and must almost assume the patient was harmed by others. And your job is to help to bring about reconciliation and justice for the harmed individual. This is actually what “caring” for another human being is supposed to be about.
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Open Dialogue practitioners don’t see themselves as treating “mental illnesses” in the patients. They don’t see psychosis as something that happens “in” particular people, but more as something that happens in social networks, in exchanges and relationships, which may of course involve abuse but also other kinds of problems. And instead of thinking they know exactly what it is, they see their goal as getting people talking and communicating so that dialogue with multiple views can be created about it.
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I wonder if this approach could not be extended to other forms of “mental illness” like anxiety or depression. They all seem like different demonstration for common problems.
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Hi Ron
Great article!
I would answer yes to both of the questions. I was genuinely disabled and in receipt of a disability cheque while I consumed these drugs, and when I tried to stop I nearly went mad. But I was able to stop with tapering and practical Psychotherapy.
I don’t believe there is any such thing as ‘Schizophrenia’ . I believe it to be a completely false illness. When a person is distressed their thoughts and behaviour are likey to be ‘all over the place’. I did ask for Psychotherapy at the beginning.
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One thing I miss in these MIA discussions is the voices that would stand up for the status quo! It’s actually important to hear those voices – sometimes they are correct, they point out something about the status quo that may be worth saving, other times they are wrong but are still valuable because they give us all experience in responding to them.
So since no one else is offering anything, here’s a defense of the status quo and of antipsychotics that my own mind came up with, tell me what you think…..
In summarizing Harrow’s 20 year data, Sandy had written that “At 2 years, 74% of individuals in group 1 [those who stayed on drugs over the whole period] had psychotic symptoms, as did 60% of those in group 3 [the group that quit drugs by 2 years and stayed off]” and she noted that this difference between the two groups was not statistically significant.
When I first read that, I took it to mean that the two groups could be understood to be having roughly the same degree of a hard time with their “psychotic” experience. However, thinking about it more, I realize someone could argue that the group that was still on antipsychotics might be a group that really had much more serious problems with psychosis on average, and they only seemed to be having about the same level of problem with psychotic experiences because most of their psychosis was being controlled by the drugs they were taking.
So the better outcomes over the next 18 years could have come from a tendency for those with milder psychosis to show recovery, while those with more serious psychosis at two years were much less likely to recover. If this is true, the difference in outcome could have nothing to do with the antipsychotics making the psychosis worse.
Anyway, just a thought. I believe it’s important we look at all the possibilities, so we don’t just become an echo chamber for our own perspectives.
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You could compare the outcomes with those of low and drug free approaches such as Soteria, Open Dialogue and Bertram Karon’s experiments on drug free psychotherapy for newly diagnosed with schizophrenia and see how those outcomes compare with Harrow’s long term outcome study.
I think the evidence shows it is not the severity of the problems that is important, it is whether the person shows any improvement due to psycho-social support. One of the Open Dialogue workers wrote that if there is a small improvement due the meetings they have then drugs are probably not necessary. That seems understandable to me. If someone improves a bit due to helpful conversation then it seems likely they can improve a lot over a longer period of continued help without drugs. If there is no improvement then some may argue drugs are worth trying.
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Its about keeping an open mind, isn’t it.
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Interesting counterpoint and one that I am guessing most folks supporting the “status quo” would suggest. I’d beet rested to see how folks who have delved I to this study would respond.
I’ve said it before but I would love to see folks like Jaffe, Torrey and many folks from NAMI post and occasionally author pieces here. It would certainly broaden our conversation and lead to more substantive debates. I would also love to see pieces written by NAMI advocates…but hopefully without a string of conversation ending posts.
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Well, we need to devil’s advocates here if the devils are not willing to engage ;).
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Except that as I recall the findings, they had four groups: schizophrenia on drugs, schizophrenia off drugs, less serious psychotic disorder on drugs, and less serious psychotic disorder on drugs. The schizophrenia-off-drugs group did better in the long term than the less-serious-psychotic-disorder-on-drugs group. One would assume that those with the less serious psychotic disorder had a better prognosis and a greater likelihood of recovery without drugs; still, giving them drugs provided a worse outcome profile than those with schizophrenia diagnoses who avoided or weaned off of medication.
I think that pretty much kills off the “they were worse off so they needed drugs” argument. Adding to that, when the long-term outcomes differ so widely (68% to 8% at 20 years), random differences can’t rationally be the causal factor, because you have a bimodal distribution. How would it be possible that there is this HUGE gap between those who naturally recover (92% rate) and those who “need medication” (32% rate) without some kind of artificial intervention? Unless we’re somehow talking about two distinctly different conditions, which of course there was no reason to believe was the case (these people were self-selecting), the only variable that could possibly account for the discrepancy is the drug “treatment.”
—– Steve
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The data I was referring to here was a more recent paper in which he looked at those individual diagnosed with schizophrenia and evaluated for the presence of psychotic symptoms. He divided this group into three: one who was on drug at every assessment point, another who was on at some times but not others, and another who was never on drug at any assessment. The numbers i cite compare those always on drug with those always off. he has a graph in his paper which shows this nicely but I could not figure out how to post it.
I discuss it here:
http://www.madinamerica.com/2014/03/neurolpetics-anti-psychotic20-year-follow/
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That is possible. Although I guess they corrected for “symptom severity” it’s still difficult to quantify what that means. That’s why the patient randomisation studies should be more reliable.
The point is – it’s not just one study and it seems to be consistent with different ways of looking at the problem. Also the WHO study on schizophrenia in 1st and 3rd world seems to point in this direction.
Btw, even if this criticism was right that is still an argument against forced treatment with anti-psychotics since there is no way to predict who will recover and a huge percentage of people do recover.
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Hi Ron
Psychotherapy showed me how my anxiety dynamic worked and how to compensate for withdrawal syndrome – and without that knowledge I would never have become independent.
Would Psychotic symptoms that are not disabling (or illegal) be an issue?
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If “psychotic symptoms” are not disabling or leading to illegal behavior or severe distress, then it starts becoming possible to argue they shouldn’t be called “psychotic” at all.
My nutshell definition of “psychosis” is that it means “being out of touch with “reality” and/or disorganized in a way that causes problems. So if a person is still able to handle reality OK, and is reasonably relating to their own needs and to the rights of others, then they might be having an alternative way of being in contact with “reality’ or an alternative way of being organized, but it isn’t one that requires any kind of “help.”
Of course it gets way more complex than that. Often people get pushed into psychiatry not because they are having real problems but because others are scared that they might be – Eleanor Longden’s story of getting started with psychiatry is a classic version of this. And once one has been identified as being “mentally ill” then people tend to be less tolerant of “alternative ways of being in touch with reality or of being organized” because they worry this will just lead to something bad if it hasn’t already.
One thing we need from a good mental health system is caution about rushing in to “help” when things may be going OK, albeit differently than “normal.”
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@Ron, trouble is the sort of logic you are using here is straight out of the psychiatric play book….. if you “get better” you were never really “ill” in the first place….
It won’t wash….. the whole system functions as a sort of dragnet….. pretending you can chunk up who gets caught in a meaningful way is a doomed enterprise…. imo
Appreciate your comments though….just saying….
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As a person who has personally dealt with altered states of reality due to extreme and ongoing stress I found that at times medication did help. I am now happily off all medication and managed to do it without a lot of help. As a former mental health professional before I came into the mental health patient world I remember a well respected psychiatrist trying to get us at the clinic to try an anti psychotic. No one was willing to try. So the adverse effects if not actually known were apparent. This was in the 1980’s!
The ability to live with altered mental states without hospitalization was well known back then and before. The DSM II has a label of ambulatory schizophrenic. This was for the folks who were either delusional, paranoid or experience altered states but were able to function independently. Some were on meds some weren’t. I don’t understand how this was dismissed and hospitalization became the treatment status qou
I remember trying to gather childhood histories on my clients on the psych unit and almost all had some form of psychical, emotional, or sexual abuse issues that were not being uncovered by the medical students, or medical residents who were doing most of the assessments. This is when sexual abuse recognition was just coming to the forefront.
My best guess is there are multiple and many reasons for alter mental states and we have no idea as professionals and the mental health community all the various factors that trigger it. We have guess and some paths but we are still shooting in the dark. Once again looking at each individual in crisis requires a clear head open mind with accurate and long historical; mindsets. This is true with all medicine ,all forms of help.
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CatNight I agree with nearly everything you say.
I was given ‘antipsychotics’ in the 1980’s and I promise you they had adverse effects. Tranquillizers could work for some people in the short term but they’re still tranquillizers – they’re not medicine.
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Barrab. You’re right, and you hit the nail on the head in your first paragraph.
We now have our son out of the system after a 2year fight, and he is at home with his parents, trying to gradually reduce his meds; it is a nightmare for all of us but at least now we have hope. Neither we, nor psychiatry before us, have a clue what we are doing. The difference is we admit it.
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“some have argued that the much superior outcomes for those that those who came off drugs during the study period were achieved because these were the people who had recovered, rather than being because the drugs themselves impaired recovery.”
Well, that is still an argument against forcing people to take drugs since you can’t predict who will recover and these drugs have debilitating physical side effects. If someone told me: you have a say 30% chance for recovery within 2-3 yrs or almost zero chance and debilitating side effects of drugs which will kill you 25yrs earlier then I’d probably go for the first option.
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Yes, I think it is a key point that the professionals can’t predict who is going to recover, and they don’t know for sure how people are going to do on drugs versus off, so this supports the idea people should be able to choose for themselves.
I do think it’s worth mentioning that there is no good evidence that the drugs are making people die on average 25 years earlier. Diagnosed people have lots of reasons to be dying earlier, from smoking to suicide to low income to living in areas where everyone dies on average a decade or more early (yes they can predict who will likely die early just by zip code.) Drugs are apparently a factor in early deaths, but I think we lose credibility when we keep repeating the 25 year thing when we can’t back it up with evidence that the drugs alone account for the whole 25 year difference.
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That is of course true. But I’d love to see a study which actually addresses that – what is it that the SMI folks actually die from these 25yrs earlier. Because so far it’s been turned mostly into a discussion between “anti-psychotics cause it” and “suicides and smoking and other bad habits due to an illness” cause it. Of course even if you show that 85% (random number) are from metabolic syndrome the drug proponents will start to look for genetic risk associating metabolic syndrome with schizophrenia (call me cynical…) but that would look even more bogus given it’s a well described drug side effect. Also if the main cause for death was say suicide (which is unlikely) it is still not clear how much it’s due to original problem and how much because of the drug induced disability. So a study would have to look at the cause of death and on whether the person was on drugs, waht drugs and for how long and a plethora of other factors.
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I have some suggestion about the treatment of people who suffer from psychosis – but as I have no personal experience – feel free to criticise:
1) one which may not be helpful to most people with the first episode since it’s rarely something one expects, maybe from rare cases of “family history”) but may make a huge difference for people with recurring psychotic episodes- advance directives or psychiatric testament. A person will be able to make decisions about how they should be treated, who can treat them, with what and if they were to become suicidal due to strong delusions/hallucinations should someone be able to use force (and what kind of force) on them (I strongly believe that letting people make this decision makes use of force less traumatising and essentially a person’s choice). That would also allow a person to refuse treatment entirely (including the right to suicide) which should be the right of every patient. In this case the argument about people in psychosis unable to take decisions is gone since the decision has been taken while the person was “sane” (and should be done in presence of a lawyer). I think access to such lawyers should be offered free of charge as patient advocacy.
2) offer every patient out there a leaflet which contains the information about long-term outcomes and possible consequences on staying on drugs vs using them sporadically vs getting off them entirely together with comprehensive information about side effects and withdrawal syndrome and how to best get off drugs
3) provide services, including professional medical help, that help people in drug withdrawal
4) help people with any social and economic problems that may arise because of psychosis or drug withdrawal (housing and employment options, counselling, assisted living)
5) offer peer support and safe respite homes at voluntary basis
6) create alternatives to drug treatment of 1st episode psychosis based on Open Dialogue project and follow up the results to compare them with so called “standard treatment”
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Two more:
– offer people psychological therapy in addition or as an alternative to drugs – that should include counselling on how to do with hallucinations if getting rid of them is not possible or not a preferred option by the individual
– educate the public about psychosis, the best is by organising open talks and meeting with people with lived experience
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Thank you for the service provided by this website and the articles/resources therein. Psychiatry/pharmaceutical companies have excelled in depicting a single binary outcome for those diagnosed with schizophrenia: “antipsychotic” medication compliance vs discontinuation and relapse.
In my experience, psychiatrists tend not to discuss the immediate and long-term side-effects of the former course of action, and they downplay or dismiss outright the possibility of mental health much less flourishing post-discontinuation of meds.
I stand up to be counted as one who has been free of both meds (of any kind) and psychosis for over two years, after a three month adherence to that regime – and a psychiatrist’s prognosis that I would be on meds, in ever increasing doses, for the rest of my life.
I took a job less than two months after my diagnosis (having rejected the disability pension proffered), and I have remained employed in the same area (of a major university) ever since. My employers have no knowledge of my former diagnosis and would be utterly shocked were I to disclose it. I’ve been called upon to work in ever-more demanding roles (including with respect to interpersonal facility and attention to detail) and I’ve excelled at each (still, I wait for the Peter’s Principle to take effect :)).
I live alone and independently in beautiful and harmonious surroundings, effortlessly paying my taxes, rent, bills and dues in general. I cook delicious and nutritious food for myself and for family and friends (especially if they are in need). I am yet to set the world ablaze, and I will never accumulate impressive wealth or fame (personally abhorrent!), but I think it’s safe to say that I’m a “productive member of society”.
I really want people – and especially psychiatrists, who hold so much power – to know that there are MORE possible outcomes of schizophrenia than there are people thus diagnosed. I’m not qualified to suggest that everyone will do well off meds, but I’m pretty sure that a larger number could than is conventionally envisioned.
With liability and insurance issues, alongside the persuasiveness of the pharmaceutical industry (from medical training right through to the Merck manual, conferences etc), there are significant disincentives/disinclinations to taking/supporting/advocating any kind of risk in terms of discontinuing meds (strangely, the risks of remaining on them seem invisible and nonthreatening to liability/insurance).
I’m lucky that I’m strong-minded and -willed enough to have seized control of my own health and destiny – in the face of both professional and family opposition. My family have since accepted and acknowledged that I took the right course of action for me. The psychiatrists, well, we’ve been out of touch, but I may yet update them.
My message is this: if you/those who care for you are up to the task of assessing the manifold dimensions of you and your psychosis, are willing and able to research and enact healthful practices and, after weighing the pros and cons, have confidence that you might succeed off meds… then at least keep considering and researching it, and seeking a sympathetic psychiatrist who might support your discontinuation.
In many ways, life off meds might be more challenging than staying on them (if you keep going as you were pre-psychosis, well…) – you’ve got to learn and change in order to get anywhere in life, and that includes dealing with psychosis.
My very best wishes go out to anyone suffering from/diagnosed with schizophrenia, and to anyone who genuinely cares. Keep on doing your best!
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Thanks for this comment! Your story and the clear way you tell it points out so much that is wrong with current approaches to treatment and risk. It’s very valuable when people like yourself find a way to speak out, even anonymously, because you represent a truth that is so often suppressed.
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My true personal experience : When I started to hear voices in 1999, I had no psychotic disorders. In 2009, I stopped taking antipsychotics and it is only at that time that I suffered from psychotic disorders. From 2009 until today, I am gently recovering from psychotic disorders while I still hear many voices in the mind. Also, smoking cannabis has never been a problem for me, never. Cannabis erase all the voices I hear all the time and does not make me psychotic. Alcohol has always been a big health problem for me and since I stopped taking antipsychotics I have to recognise that I can not drink alcohol anymore because it makes me psychotic and very ill.
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When my “genius” son is off antipsychotic medication he is sooo paranoid. I really want him to stop taking them but not good on them but worse off. When off meds if someone says something across the room or on on tv it is a message to him which can be pretty scary but the meds seem to make them less intense. He is 19, not in school and has so much to offer the world. Any suggestions how to live with messages? He was diagnosed with OCD/schizophrenia.
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I agree with Fiachra that one thing that can cause paranoia when stopping the drugs is just the rebound effect, the brain is used to the dopamine blocking effects of the drug, and with that gone, it starts over-reacting, like too much paranoia or suspicion. Of course, there’s also the problem that people can just be caught up in habits or patterns of thinking in ways that are too suspicious, the drugs dampen that down (by making everything seem less important) but then it bounces back when the drugs are stopped. So I would suggest starting to learn how to question one’s own paranoid thinking, by reading books like “Overcoming Paranoid and Suspicious Thoughts” and/or seeing a counselor who knows how to help with that – and then quitting the drugs only very slowly, so not too much paranoia comes out all at once.
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Yes, any body taking these type of drugs that comes off them without a a suitable drug taper and without suitable support is likely to become “soo paranoid”. Its known as rebound syndrome.
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Severe Anxiety is a bit like a Panic Attack. When someones in it, “whats possible” seems “very real”. But when the mood softens things seem a lot different.
People that withdraw from Valium get exactly the same thing. But either way the answers are in the talking treatments.
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momsad,
“..An overview of the current state of knowledge in the field, concluding that psychosis can be understood and treated in the same way as other psychological problems such as anxiety or shyness…”
British Psychological Society
https://www1.bps.org.uk/networks-and-communities/member-microsite/division-clinical-psychology/understanding-psychosis-and-schizophrenia
(Free Download)
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