My theory on schizophrenia

Hi Alex,
As I read your response, it seems it was I who was pushing your buttons, and for that I apologize.

For clarification purposes, I was speaking earlier of ALL psych meds, not just the anti-psychotics. Are you all speaking specifically to antipsychotics?

Mandy, I guess my comment to you would be that medication effects do not have to be black or white, i.e. totally sedating as in sitting in the corner drooling, or totally useless as in the case of your homeless relative. IMO there is as much art as science in prescribing medications, particularly psych medications. Most schizophrenics that I've treated typically require a "cocktail" of meds and it takes much trial and error to find the right "recipe." During that trial and error period there is no question that the patient may greatly suffer. Some give up before the right combination is ever found. For some, there is no "right" combination. This is a great sadness for me, and a daily burden.

In the state in which I live psychiatrists do not have the legal right to detain, or Baker Act a patient. That decree must come from a CDMHP (County Designated Mental Health Professional.) What a pdoc CAN do is hold a patient until they obtain such evaluation. Additionally, prior to a competency hearing, a patient has the right to refuse all medications for a period of 24 hours prior to appearing in front of the judge. They somehow feel as many do here, that they are better off without medication, and what they find is that with the stress of court, they are not able to control their behavior and are sometimes detained for another 90 days. Also heartbreaking.

We need to know much, much more about how the brain works and all the billions of ways it doesn't.

If I were a bettin' woman, I'd have my 401k on gene therapy.
Take care,
Okie

Gosh, Chris, I wish it were that simple. It just isn't. Psychiatrists in an inpatient setting do get to know the patients, talk to them, get them involved in activities (to the best of the patient's ability), individual and group therapy. Where did the stereotype arise that all pdocs do is overmedicate patients to keep them quiet and compliant??? That's never the goal of a hospitalization.

I agree that human beings are resilient. But mental illness is a result of disease. I concentrate on what's good in my patients every single day and yet they don't all get better. Sometimes they decompensate. Sometimes they can't bear another day of pain and kill themselves. Sometimes they choose the pain over the fear of taking the medications.

You're right. Sometimes we just don't have the answers. But, I'm optimistic that some day we will have lots more of the right answers and that will be a glorious day indeed!
Take care,
Okie

i was focusing specifically on anti-psychotics. why? because there are many many many medications in the world with very different actions and so i'm not sure how many useful generalisations there are about ALL medications or even ALL PSYCHIATRIC medications.

sedation isn't an all or none affair... ones cognitive and motor abilities can be more or less sedated. half a glass of alchohol... a glass of alchohol... a glass and a half of alchohol... two glasses of alchohol... i'm sure you get the general idea.

> Most schizophrenics that I've treated typically require a "cocktail" of meds

do they? they wouldn't be able to get through their episodes (and get back to their lives) if they had a safe place provided for them where they had caring people to talk to about what was going on for them?

many people who are labelled 'anti-psychiatrists' maintain that this is a more optimal treatment to providing sedating medication.

aren't able to control their behaviour...

that is an interesting notion. control their behaviour in what sense? so they stop reporting on hallucinatory / delusional experiences? anti-psychotics seem to be most effective with respect to curbing the positive symptoms of schizohprenia / psychosis. also help with anxiety / agitation because of their sedative effects (there is a reason anti-psychotics used to be referred to as 'minor tranqualisers). WE might feel better to curb their reports and have them calmly lying in their beds but it is unclear that ongoing sedation is the most effective theraputic intervention...

but... it is a hell of a lot cheaper to provide drugs than to provide ongoing caring social supports.

with respect to the genetic basis of schizophrenia. if one is an identical twin then one is genetically identical to ones twin. if ones twin has schiozphrenia then it is more likely than not that one will not have schizophrenia. there is only something like 48% concordance for identical twins with respect to schizophrenia. this undermines the claim that schziohprenia is genetically determined. the environment is doing most of the work.

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okiedokie: ... mental illness is a result of disease.

I have a friend who often reminds me, how do you know what you think you know?

Meantime, in another cyber galaxy not so long ago...

The work of Jonathon Leo illustrates the problem with the genetic theory of schizophrenia. I wanted to highlight this statement...

<center>5 cases of chronic schizophrenia out of a group of 173 individuals (<font color=red>2.9%</font>)
is not much higher then the general population rate of 1%.</center>

and contrast it with this one...

<center>The cornerstone of Read's tectonic plate-shifting evidence is the 40 studies that reveal childhood or adulthood sexual or physical abuse in the history of the majority of psychiatric patients. A review of 13 studies of schizophrenics found rates varying from <font color=red>51%</font> at the lowest to <font color=red>97%</font> at the highest.</center>

I said then: What I'm wondering is why do we hear so much about schizophrenia and the genetic link and so little about schizophrenia and the traumatic link?

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<blockquote>[*] Psychiatrists who say that so-called schizophrenia is a brain disease like Parkinson's, Alzheimer's, and multiple sclerosis, are distorting medical facts. They are making the so-called "schizophrenic" condition seem much worse than it is. What these psychiatrists do not tell the public is that while neurologists can determine with laboratory testing who has Parkinson's, Alzheimer's, and multiple sclerosis, no neurologist can determine with laboratory tests who has schizophrenia and who does not. No one dies from schizophrenia, even when untreated, and people diagnosed with "schizophrenia" can recover on their own without treatment -- something no person with Parkinson's, Alzheimer's, or multiple sclerosis has ever done.

Dr. Al Siebert</blockquote>
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Not long ago I had a brief discussion with a psychiatrist who told me (and numerous others) that John Nash's recovery from schizophrenia was dependant upon his treatment with anti-psychotic medication. What she didn't know -- perhaps because her belief systems limited her perspective to the extent that she saw no cause for investigation -- was that John Nash stopped taking neuroleptic medication in 1970.

Reference: A Beautiful Mind

See also: Medical students are taught it's all in the genes, but are they hearing the full story?</blockquote>

<blockquote>
Re: The kind of stuff that will break your heart...

There are a number of individuals I remain indebted to, each of whom have helped bring me to this place I am in today. Foremost among these are two dear friends who know who they are. I would not have made it without them and they know as much, for I've told them both, many times over.

I am also indebted to a stranger who reached out to me with compassion and concern during the peak of my "psychosis". A little kindness in the right place goes far. That individual is also aware of the impact they had on my life.

I am further indebted to the internet itself and the wealth of material it delivered right to my doorstep from some of the most innovative and brilliant minds in psychology and psychiatry: Carl Jung, John Weir Perry, Marion Woodman, David Lukoff, Loren Mosher, R.D. Laing, Maureen Roberts, Clarissa Pinkola Estes, Anne Baring, Rufus May, Daniel Fisher, and numerous others.

I am especially indebted to other ordinary human beings like me, who have an intimate understanding of the experience that is known as psychosis/schizophrenia in this culture. They have been some of my greatest teachers...

[*] <font color=#FF4500>It was 1972 when Isaiah decided to drop a hit of acid on the beach with two fellow students in his medical program. At some point in that experience, the sun rose... As it crested the horizon, the sun blossomed into full flower and spoke to Isaiah: The sun told Isaiah that he was a child of god. Isaiah interpreted this to mean that he was Jesus Christ.

Isaiah's friends didn't know what to make of his god trip so they dropped him at the doorstep of the local psych ward. According to Isaiah, he then underwent more than 200 electroshock treatments and more than 200 hours of insulin coma therapy for the crime of believing he was god.

I always respected Isaiah for he was one tough cookie, but I also gave him a wide berth because he was rumored to have killed his psychiatrist. For all I know, Isaiah himself started that rumor. I can see where it would have had a certain degree of usefulness for him. It helped ensure that others -- like me -- kept their distance. After all, Isaiah didn't mind his time spent dancing with the gods; it was the human beings he didn't trust.

Isaiah has never recovered from the trauma of his treatments. In spite of wherever he's been, he's managed to secure a small parcel of land for himself in a beautiful setting, a wife, and children. For what it's worth, Isaiah also happens to still believe that he is Jesus Christ and I -- for one -- am not willing to argue the matter with him.</font>

[*] <font color=#C71585>Hazel was a young mother when she experienced her first psychotic break. She was separated from her husband and children and placed in a lock-down ward where unusual behavior was punished by being stripped naked, hosed down, and placed in isolation. Hazel's behavior strayed into the unusual so often, she finally took to going naked.

It took Hazel eighteen years to move through her schizophrenic process; she identifies an empathic therapist as being instrumental in her recovery.</font>

[*] <font color=#000080>Patricia was a woman I encountered through our mutual involvement with a specific website. I'm almost ashamed to say that I don't remember much of Patricia's personal experience. What I do remember is that she was one of the few people who ever took the time to read the account of my experience, and read it with the same, painfully slow deliberation as it was written over those several weeks. She didn't judge, she didn't rush in to make my experience into something more palatable to her. She let it be...

Patricia is not only recovering; she is assisting in the recovery of others.</font>

[*] <font color="#800000">Michael was a graduate of John Hopkins University in their mathematics program. A clearly sensitive young man, Michael also wrote poetry, had been practicing kundalini yoga and experimenting with ethnogens when he began to experience a strange sequence of synchronicities and coincidences. What was most striking to me at that time was that he had encountered three women in swift succession, appropriately named Eve, Helen and Mary.

Michael jumped off a bridge two days before Christmas. He was the teacher who taught me why it's important to share my experience with others -- so they feel less alone in theirs. Michael was 31 years old. I will never forget the anguish of his father.</font>

[*] <font color="#006400">I didn't meet Benjamin. I met his mother. She was a truly beautiful person who was deeply grieving the loss of her son. Benjamin had died due to a rare complication of anti-psychotic medication known as Neuroleptic Malignant Syndrome. The cause of death on his autopsy report was listed as, "Natural".

Benjamin's mother didn't quite know how to wrap her mind around such a word. How could the death of her beautiful son be natural? How could he die as a result of the treatment that was supposed to help him? How could those within the medical community dismiss his death so callously as being "natural"?

Benjamin was 25. His mother is currently recovering.</font>

[*] <font color="#B22222">Marek was a diagnosed paranoid schizophrenic who spent six years in the care of psychiatrists and various medications. I ran across his blog when I followed up on a well placed link. Shortly thereafter, Marek went through another "break". He decided to go into the experience itself and in that process, made some fascinating discoveries about why he was the way he was.

Marek is recovering.</font>

[*] <font color="#191970">xxxxxxxxx was in his late teens when he went through his first "break". Like Marek, I first "met" him through his blog. He could be one of the many young men out there who first encounter this experience called "schizophrenia" in this culture when they are on the verge of adulthood.

xxxxxxxxx has had great difficulty coping with what I call the encounter with the abyss -- a point of annhilation that can be part of the "schizophrenic" process, wherein one experiences oneself as nothing at all. He also has anger at having been cast into this experience that may well mean that no one will ever look at him the same way again. This part of him, angry and alone as it may be, gives me hope. Somewhere, xxxxxxxxx knows he's much more than a label -- he is a human being, having a very human experience.

Our encounters were brief, few, and in between. Still, there was an intelligent mind and a sensitive heart behind that chosen cyber name. I think of him often and hope he finds his own recovery -- in his own way and his own time.</font>

Source: Dedication

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I sincerely believe that every individual who is given the label of "schizophrenic" deserves the best of care. Many of them do not get it.

The least hopeful data tells us that at minimum, one third of those diagnosed will recover fully. I would not be interested in working with any psychiatrist who cannot meet this minimum. Given their opportunity for expertise and an abundance of technological tools, their results should be considerably higher. The fact that they are not is a burden that rightfully belongs in the lap of psychiatry but it is one that, more commonly, their patients will bear on their behalf.

"Schizophrenics" deserve better.

See also: Schizophrenia &amp; Hope

oh yes indeedie. i haven't ever been diagnosed with schizophrenia but i've been diagnosed with borderline personality disorder. psychiatrists and other clinicians told me that i shouldn't go back to university because i couldn't handle the stress. psychiatrists and other clinicians told me that it was unethical to apply to a PhD program overseas because it was likely that i couldn't handle the stress. they told me that i'd experience some alleviation of my symptoms some time in my early to mid fourties.

if i listened to them i would have severely limited my life.

i kinda went '%#@&#! you lot' and did it anyway. sure i struggle at times (but then who the hell doesn't?) but i'm doing it. i didn't let them limit me.

now that i'm doing it they say 'oopsie you were misdiagnosed you never did have borderline personality'. they put me down as a misdiagnosis instead of a case of 'recovered before the age of thirty'. they predict that borderline personality disorder is chronic and every case of improvement they put down as a misdiagnosis. there is thus no empirical way to falsify the claim that the disorder is chronic. if i'd have believed i was chronic and limited my life accordingly they would be saying 'see, borderline personality disorder, chronic, we told you so'.

their predictions are often made true by self-fulfilling prophecy methinks. that is to say that if people who you respect (clinicains, for example) repeatedly tell you that you can't do something then you come to believe that you can't do it and therefore you can't. their prediction (and the effects of their prediction on you when you internalise it) make it so.

'you will never get better if you don't take your medication'
'i can't help you if you won't help yourself (ie take your medication'

how much do these attitudes harm people?

how much does believing that one can't cope without medication make it so?

it hurts me a great deal. clinicians can have all the good (paternalistic) intentions in the world they can still be misguided and they can still dehumanise you and make you worse even with the best intentions in the world.

i'm glad that you have come to an understanding that helps you, spiritual_emergency. i hope that you can inspire / help others who are not quite sure on the predictions that others have made about their lives... i hope that you can inspire / help others to disregard their unhelpful predictions and go on to live a life that YOU consider worth living.

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alexandra_k said:

- some consumers are very much opposed to anti-psychotics. they report that they sedate them and they do not like that.
- some consumers are very much in support of anti-psychotics. they appreciate the sedation.

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Not all anti-psychotics are sedating (Abilify, for example), and others can be taken once a day at bedtime (Seroquel, for example) so the sedation aids sleep but wears off by morning.

I imagine there are cases where certain anti-psychotics are prescribed specifically for their sedating properties, such as in the case of manic or aggitated psychotic states, and it could be argued that this is done for the sake of staff trying to manage patients' behavior, but it is also done for the protection of the patient, who could be a danger to him/herself and others.

<blockquote>
alexandra_k: psychiatrists and other clinicians told me that i shouldn't go back to university because i couldn't handle the stress. psychiatrists and other clinicians told me that it was unethical to apply to a PhD program overseas because it was likely that i couldn't handle the stress.

...

if i listened to them i would have severely limited my life.

i kinda went '%#@&#! you lot' and did it anyway. sure i struggle at times (but then who the hell doesn't?) but i'm doing it. i didn't let them limit me.

You, no doubt, would be a "non-compliant patient," alexandra_k. To which I can only say... good for you.

See also: Recovery: What Helps? What Hinders?

> Not all anti-psychotics are sedating (Abilify, for example), and others can be taken once a day at bedtime (Seroquel, for example) so the sedation aids sleep but wears off by morning.

What is the mechanism of action of Abilify and Seroquel? They work on the dopamine system to inhibit / prevent communication between the frontal lobes and the lower level structures. (The long term affects of that are the 'tardive dementias' that are often taken to be evidence of the neurodegenerative nature of schizophrenia rather than as evidence for the long term brain damage caused by medications messing with the dopamine system). They sedate in the sense that they inhibit communication between the frontal lobes and the lower level structures. They also sedate in the sense that they similarly inhibit communication between the lower level structures and the basal ganglia (which is what reults in the tardive dyskinesias - movement disorders) long term.

one often swears that alchohol hasn't affected one after one has had a glass of wine. cognitive and motor coordination tests reveal that one IS affected, however. one might swear that anti-psychotics aren't sedating during the day. cognitive and motor coordination tests would clear that up, however. it is unclear how much the cognitive differences found in people with schizophrenia are caused by the medication rather than by the supposed degenerative nature of the disorder.

why is it that two thirds of people in developed western nations have degenerative schiozphrenia whereas only one third of people in developing nations have degenerative schizophrenia do you think? surely... it doesn't have anything to do with medication? er... does it?

> but it is also done for the protection of the patient, who could be a danger to him/herself and others.

yes. paternalism. 'it is for your own good' 'we are trying to help you' and so on and so forth. we are trying to help you so much that we are locking you up in an institution where the nurses all hang out in their nurses station and have minimal contact with patients. we are trying to help you so much that we will spend 10 minutes with you and figure out which cocktail of medications to give you this week. we are trying to help you so much that we won't have caring people on the ward who you can talk to about your experiences and your fears and your worries. we are trying to help you so much that we will consider all of that irrelevant. something that will cease with strategic administration of medication.

misguided...

A few excerpts from Judi Chamberlain's article...

<blockquote>Professionals and patients often have very different ideas of what the word "recovery" means. Recovery, to me, doesn't mean denying my problems or pretending that they don't exist. I have learned a lot from people with physical disabilities, who think of recovery not in terms, necessarily, of restoring lost function, but of finding ways to compensate or substitute for what one may be unable to do. Some of the most able people I know, in the true sense of the word, are activists in the physical disability movement - they may not be able to see, or hear, or move their limbs, but they have found ways to do the things they want to do despite these difficulties, and despite those professionals who advised them not even to try. Without our dreams, without our hopes for the future, without our aspirations to move ahead, we become truly "hopeless cases."

I often hear professionals say that, while they support the ideas of recovery and empowerment in principle, it just won't work for their clients, who are too sick, too disabled, too unmotivated. Whenever I hear these objections, I want to know more about what kinds of programs these professionals work in, and what goes on there. I know that the professionals who knew me as their patient thought the same things about me. That's the dilemma of the "good patient." A good patient is one who is compliant, who does what he or she is told, who doesn't make trouble, but who also doesn't ever really get better. A "good patient" is often someone who has given up hope and who has internalized the staff's very limited vision of his or her potential.

Now, again, I want to make myself clear. I'm not saying that mental health professionals are evil people who want to hold us all in the grip of permanent patienthood, and who don't want us to get well. What I'm saying is that there's something about being a "good patient" that is, unintentionally, perhaps, incompatible with recovery and empowerment. When many of us who have become leaders in the consumer/survivor movement compare notes, we find that one of the factors we usually have in common is that we were labeled "bad patients." We were "uncooperative," we were "non-compliant," we were "manipulative," we "lacked insight." Often, we were the ones who were told we would never get better. I know I was! But twenty-five years of activism in the consumer/survivor movement has been the key element in my own process of recovery.

Let's look at this word "compliance." My dictionary tells me it means "acquiescent," "submissive," "yielding." Emotionally healthy people are supposed to be strong and assertive. It's slaves and subjects who must be compliant. Yet compliance is often a high value in professionals' assessments of how well we are doing. Being a good patient becomes more important than getting well. ... Getting better, we were informed by staff, meant following their visions of our lives, not our own.

...

We need to start encouraging people to dream, and to articulate their own visions of their own futures. We may not achieve all our dreams, but hoping and wishing are food for the human spirit. We, all of us, need real goals to aspire to, goals that we determine, aims that are individual and personal. I feel crushed when I visit programs that are training their clients for futures as residents of halfway houses and part-time workers in menial jobs. And if I, a visitor, feel my spirit being crushed, how do the people trapped in those programs feel?

Researchers have asked clinicians what kinds of housing, for example, their clients need, and been told that congregate, segregating housing was the best setting. At the same time, the researchers have asked the clients directly what kind of housing they want, and been told that people would choose (if they were given the choice) to live in their own homes or apartments, alone, or with one other person they had chosen to live with. At the end of the year, the researchers found, the clients who got the kind of housing they wanted were doing better than the clients that got the housing that was thought to be clinically appropriate. Helping people to reach their goals is, among other things, therapeutic.

One of the reasons I believe I was able to escape the role of chronic patient that had been predicted for me was that I was able to leave the surveillance and control of the mental health system when I left the state hospital. Today, that's called "falling through the cracks." While I agree that it's important to help people avoid hunger and homelessness, such help must not come at too high a price. Help that comes with unwanted strings - "We'll give you housing if you take medication," "We'll sign your SSI papers if you go to the day program" -is help that is paid for in imprisoned spirits and stifled dreams. We should not be surprised that some people won't sell their souls so cheaply.

Source: Confessions of a Non-Compliant Patient

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alexandra_k said:
yes. paternalism. 'it is for your own good' 'we are trying to help you' and so on and so forth. we are trying to help you so much that we are locking you up in an institution where the nurses all hang out in their nurses station and have minimal contact with patients. we are trying to help you so much that we will spend 10 minutes with you and figure out which cocktail of medications to give you this week. we are trying to help you so much that we won't have caring people on the ward who you can talk to about your experiences and your fears and your worries. we are trying to help you so much that we will consider all of that irrelevant. something that will cease with strategic administration of medication.

misguided...

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Alex, has this been your experience in a psychiatric hospital? If yes, I'm really sorry. That sounds barbaric and not at all my experience working in psych hospitals, current or past, although some definitely are better than others.
Take care,
Okie

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okiedokie said:

Alex, has this been your experience in a psychiatric hospital? If yes, I'm really sorry. That sounds barbaric and not at all my experience working in psych hospitals, current or past, although some definitely are better than others.
Take care,
Okie

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I must say that Alex's experience is not dissimilar to mine. My last hospital experience was in 1990, so things may have changed since then. But the 1990 hospital was one of the prestige institutions in the city, and associated with a university. Not everything which has status and prestige merits it.

I really am enjoying this thread. I didn't know there were so many "rebels" here. It's nice to hear familiar names such as Alice Miller, Dr. Mosher, Judi Chamberlain...

<blockquote>
pachyderm: I really am enjoying this thread. I didn't know there were so many "rebels" here. It's nice to hear familiar names such as Alice Miller, Dr. Mosher, Judi Chamberlain...

Some of these discussions have been ongoing for quite some time. Archive space is apparently in short supply for schizophrenics and their kin but it appears those threads are still available if you know where to find them. Here's one of my personal favorites you may also enjoy: Schizophrenia & The Hero's Journey

Meantime, do feel free to share more of your own experience and what you have found most helpful in your own recovery. Some people find drugs helpful, some don't. Some have found tremendous healing in their relationships with professionals, some haven't. Some have used alternative methods, others have never even heard of them. I think it's extremely beneficial to hear from many different voices because our experiences are unique but by sharing what has helped us personally, we may be able to help others.

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spiritual_emergency said:

Meantime, do feel free to share more of your own experience and what you have found most helpful in your own recovery. Some people find drugs helpful, some don't. Some have found tremendous healing in their relationships with professionals, some haven't.

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My "recovery" is a continuing thing, spanning decades now. I have found no psychotropic medications useful, and I've taken a lot of them. My relations with "professionals" ranges from massively destructive (to me) to, finally, very helpful in the last few months. What has been most helpful is a lot of reading, finding stories of the many people who have, mostly on their own, fought their ways out of despair -- and coming gradually to a sense of my own worth and accurate perception of what the origins of my experience are. For a long time, especially after my first attempts to find a sense of self-worth were beaten back, I tried the recommendations of others. They didn't work. So however frightening it is (and it is) I embarked on a path of my own, attempting to explore the fear. So far I am only partially successful at doing that. But I see now some reinforcements in the pages of your and other Web sites.

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pachyderm: My "recovery" is a continuing thing, spanning decades now. I have found no psychotropic medications useful, and I've taken a lot of them. My relations with "professionals" ranges from massively destructive (to me) to, finally, very helpful in the last few months. What has been most helpful is a lot of reading, finding stories of the many people who have, mostly on their own, fought their ways out of despair -- and coming gradually to a sense of my own worth and accurate perception of what the origins of my experience are.

I more or less consider myself to be recovered although I am still continuing to learn from that experience. I did live very quietly for a number of years and to a certain extent, still do. Despair was certainly part of my recovery -- tonglen practice and finding others who could identify with my personal experience helped considerably in that regard. There's much to be said for the benefit of time as well.

Like you, I've also done a great deal of personal reading in order to understand my experience. I've summed up my recovery experience here should you care to read it: My Personal Definitions of Recovery. Do feel free to wander through either of my blogs as the spirit moves you.

Meanwhile, it's always tremendously encouraging to hear from others who have been there and have found their way back to stable ground. This is particularly so, I think, for those who have been only recently diagnosed and wonder what is to become of their life. It's very important for them to know that recovery is a very good possibility for them, as is a life of meaning and purpose.

Nice to meet you pachyderm.