Showing posts with label Nancy Andreasen. Show all posts
Showing posts with label Nancy Andreasen. Show all posts

People With Schizophrenia Who Recover

Among the top five factors that limit recovery for people with mental illness:

The false belief that it's all about the medication.

Medication indeed is part of mental illness recovery. It's a bigger part for some mental health issues (like schizophrenia) than others. And its effectiveness varies from drug class to drug class.

I created a bit of a twitter storm when somebody tweeted: Please quote this tweet with a thing that everyone in your field knows and nobody in your industry talks about because it would lead to general chaos.

To which I responded: Antipsychotics cause loss of brain matter.

 Last week's post described the research study that demonstrated that claim. The study was led by Nancy C. Andreasen, MD of the University of Iowa Carver College of Medicine. One should not reject antipsychotics on the basis of the study. They do what they are supposed to do. They reduce the positive symptoms (like, psychosis) that cause so much suffering. Payoffs and price tags. But they don't do the whole healing.

I continue this week with a broader picture, the what else of recovery in schizophrenia. This post was first published in 2013 with the title:

Fabulous People with Schizophrenia

Antipsychotics and Loss of Brain Matter

What are antipsychotics doing in your brain besides preventing psychosis? This is a report on a study conducted from 1991 to 2009 that looked at that question.

Here is the context:

Progressive brain volume changes in schizophrenia are thought to be due principally to the disease. However, recent animal studies indicate that antipsychotics... may also contribute to brain tissue volume decrement. Because antipsychotics are prescribed for long periods for schizophrenia patients and have increasingly widespread use in other psychiatric disorders, it is imperative to determine their long-term effects on the human brain.

Before I get to what the study revealed, here is the investigator, National Medalist of Science winner, Nancy Andreasen.



Anosognosia and Amador

Anosognosia. It means lack of insight. But from the mouth of Xavier Amador, it’s his ticket. He tells you he knows why your son or daughter won’t take meds. And you are desperate for the answer, aren’t you. Because schizophrenia is a terrible disease and your beloved child is sick and won’t take the meds. The meds would make everything alright. So you are desperate and Xavier Amador throws you a lifeline, a promise that once you understand this unpronounceable word, you can learn how to get your child to take the meds.

He must be right, right? Because he is a psychologist and he can pronounce it. And then the kicker, he also loved somebody with schizophrenia, and he says he got him to take the meds. So NAMI invites him to give the spotlight lecture, and for the rest of the convention, parents hear every other presentation through the filter of this new word that they cannot pronounce.

Here is how you pronounce it:



But really, why bother? It means lack of insight. But you have heard of lack of insight before. And you can pronounce lack of insight. So those words don’t have the power to claim you and get you to buy his book like anosognosia can.

Actually his advice is not bad, once you get past the power play. Stop fighting your sons and daughters, stop trying to convince them that they are sick. Instead, build a relationship.

Listen: reflectively with respect and without judgment
Empathize: strategically with emotions stemming from delusions and anosognosia
Agree: find areas of agreement - abandon the goal of agreeing the person is sick
Partner: on those things you can agree on -- not being ill




I like that advice and have given you a clip of the best part of the presentation.

Now if you will permit a word of advice about relationship-building from somebody who has a mental illness and occasionally does not recognize when her symptoms are showing - ask us why we don’t take our meds.

I met a new friend at last month's NAMI convention. I explained that I wasn't going to this presentation, I had heard it a number of years ago. Then I said, "Ask us why we don't take our meds." She said her son says they make him feel terrible. Bingo.

Now it's true, sometimes people with schizophrenia have delusions that make reality testing difficult. Sometimes people with bipolar in a psychotic or manic state do not recognize that state. I have on occasion rejected my spouse's concerns about my hypomania. And some of us do go off our meds in these temporary states.

But NAMI does a disservice to family members by giving them this fancy word that substitutes for believing what their loved ones tell them. These meds suck. They cause ballooning weight gain, leading to heart disease and metabolic disorders which shorten our poor pathetic lives by ten years on average. They evaporate our sex lives (not that parents want to hear about their children's sex lives.) They fog our brains and drain our energy, leaving us with lives that are not worth living.

Nobody talks about what Nancy Andreasen discovered after fourteen years worth of brain scans of people with schizophrenia -- the more antipsychotics you take, the more brain volume you lose. National Medal of Science recipient, one of the world's foremost experts on schizophrenia, yes, Dr. Andreasen remembered to control for things like severity of illness and alcohol/illicit substance use. Neither affected the results. It was level of dose and length of treatment. The more antipsychotics you take, the more brain volume you lose.

[Funny thing, soon after she published her preliminary results, her funding evaporated.]

A conversation about why we should take our meds anyway really has to include an acknowledgement of the fact that these meds suck. True acknowledgement, not some sort of mental crossing of fingers behind the back, with the all-knowing family members chanting Amador's magic power potion, anosognosia, under their breath.

Half the people who won't take their meds think they are not sick. Those are Amador's numbers and I won't dispute them. And if you don't already know that delusions are not the sort of thing that somebody can be talked out of, then I suppose he does a service to tell you that. But are you sure that's why your loved one doesn't take the meds? He's got a whole ballroom filled with people who now believe it, and who take any other protestation to the contrary as proof of anosognosia.

Okay, that's my first objection to NAMI's sponsorship of Xavier Amador's presentation at not one but two of the three NAMI conventions I have attended. Dammit. His half truths.

The second is that his presentation is a parlor trick. Really, two parlor tricks. The first is that unpronounceable word by which he's got you. He has established the power of his credentials over you. He is the expert.

The really disturbing parlor trick is his demonstration of what a delusion is. He gets a volunteer from the audience. Then they do a role play. The volunteer answers questions about his/her spouse. Then Amador does an "intervention." He tells the volunteer that s/he has been stalking said "spouse," who is not actually married to the volunteer after all. The marriage is a delusion. The volunteer has violated no-contact orders, and they are going to get the person help. There are people just outside the door who are going to take him/her to the hospital. This goes on for a while, demonstrating that Amador is indeed not able to convince the person that the so-called spouse is a delusion. Voila! Anosognosia.

Now one interesting thing about this demonstration is that we are to take it as a demonstration of the power of delusion. But in fact, the volunteer is not deluded. The volunteer genuinely is married to his/her spouse, and ends the demonstration still sure of the fact.

What Amador has actually demonstrated is called gaslighting. The volunteer does not fall under the spell, does not forget the spouse. But the audience does. The audience is convinced that this demonstration demonstrates something more than mental cruelty, that they have learned something about the power of delusion, which, again, never existed in the first place. And he knows that this parlor trick is harmful, because at its conclusion he gives the volunteer advice about how to recover from it.

But there are those who do not fall under the spell, those who have seen it before, in some other psychologist or psychiatrist's office during a professional visit. That's why one person left last month's demonstration sobbing, and why I spent an afternoon in concentrated self-care after my exposure to this presentation years ago.

Here is an example: I call my psychiatrist to get help for symptoms I am having from withdrawal from Effexor. She says I don't have withdrawal symptoms, because it is not possible to become addicted to Effexor in the short time that I took it. I persist, I am having the withdrawal symptoms described in the literature and need help. Now who do you believe? She, after all, has a PhD in psychopharmacology as well as her MD. And I am a self-confessed mental case who insists on stopping this medication that she thinks I should be taking.

I took my wife with me to my last appointment with that psychiatrist, so she could report what happened in the office to my therapist who had slapped a new diagnosis on me based on my own reports.

Amador is not that psychiatrist. He is the trigger for the reliving of that psychiatrist because he uses the same techniques:

1. Establish the extreme power differential, in one case her academic degrees over my addled mental state, in the other his five-syllable word over the uninformed audience who cannot wrap their tongues around it.

2. Take the moral high ground of compassion, trying to help, a position over the other.

3. Say whatever the hell you want.

4. Refer any protestation back to #1.

Yes, there is a kernel here. Stop fighting your loved one. Build the relationship. But the parlor tricks do real damage. Isn't it time to retire this presentation from its position as the major Friday night presentation at NAMI conventions?

[By the way,  to add some context: adherence runs at around 50% for people taking high blood pressure medication.]

still from tv show M*A*S*H* from IMGflip.com
graphic of Zombie by Jean-nöel Lafarge, used under the Free Art License
still from the movie Gaslight from vox.com


Schizophrenia -- Taming the Dragon

Imagine you have a dragon in the house.

It has been there a long time.  When it was little, you could hide it.  You knew your parents didn't like it when you talked about it.  So you guarded it as a secret for the longest time, even with its nasty habit of singeing your fingers.  But when the couch caught fire, they knew, and insisted you get help.

They want you to get rid of the dragon.  Some of them think you can.  Others think you can tranquilize it, and the couch will never catch fire again, and nobody need ever know you have a dragon in the house.

Iron Rule #1:  You cannot get rid of the dragon.  It is here to stay.

Missing My Friends With Voices


I sat next to the young man as he told his story in Peer to Peer.  Honestly, he scared me.  I was new to the loony world.  I was getting less scared of people like me (and through them, eventually less scared of me).  But I was still scared of people with schizophrenia.  And this one, especially.  The others had a grip.  My young man had missed a session or two, not yet stable, like, able to tolerate a large room with twenty people stretched around big tables.

He whispered.  They asked him to speak up, but the longer he talked, stretching the three-minute limit to ten or fifteen, the softer his voice got.  I strained to hear him.  I was the only person in the room who could.  The story rambled, hitchhiking around obstacles and through obscure events.  If he hadn't whispered, if I hadn't strained so hard to hear the words, I would have missed it.  I would have missed him.

It actually made sense.  There was a flow.  The connections were loose, granted.  But if I got in the canoe with him, I could ride the river as he paddled through his quest to make sense of it.

That was my introduction to the inner world of schizophrenia.  My life is richer for it.  Yours could be, too.

Caveat -- Mental Illness is Real

Weighing the Costs and Benefits Part III -- How to Measure Costs

The doctor said, You have to weigh your costs and benefits.  Today we continue to figure out how to do that, based on more than gut feeling and desperation.  We are building an algorithm, logical rules applied to objective data to solve a specific problem -- in this case, do you want to put these chemicals inside your body?

On August 19 I listed the factors to consideration, benefits, costs, and other issues that affect how these are calculated.  On September 2 I listed the immediate benefits of medication, and gave you a Down and Dirty way to calculate them.  I call it Down and Dirty, because it leaves out long term benefits.  Your psychiatrist will consider this a serious omission.  But we have to start somewhere.  And desperate people have to start with a time frame they can imagine surviving.  Think about the long term benefits once you feel better, and are thinking about quitting.

Today we turn to down and dirty costs.  This is more difficult to calculate, because the research on costs is filtered through the lens of noncompliance.

When you weigh your costs and benefits, if you should happen to decide the costs outweigh the benefits, it would seem logical to give the medication a pass.  On the other hand, if the doctor recommended the medication, it was because he/she has prejudged the matter and considers the benefits to outweigh the costs.

Yesterday the pharmacy attached a piece of paper to my refill.  Every single prescribing information sheet attached to any prescription I have ever received has said the exact same words.  They come in the section on side effects.  Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects.

Evidently the you in you have to weigh the cost and benefits refers to the doctor, not to you.  If your opinion differs from your doctor's, then you are noncompliant.

The Filter of Noncompliance Distorts Research

The information available about costs is filtered through this concept of noncompliance, the assumption that the doctor knows better than you.  So when they do research about costs, they are asking, Why do patients fail to comply with the doctor's more educated judgment?  The purpose of the research is to find strategies to get you to comply.

Our algorithm, on the other hand, asks a different question -- I believe a more neutral question.  How do the reasons to take the medication stack up against the reasons not to?  I do not presume an outcome, do not make any judgment, and certainly do not presume your decision.  While I am critical of the oversell, remember, I am currently conducting my own thirteenth trial!  But I have to get my information from people who have already made up their minds.

And they call themselves scientists.

Nancy Andreasen, a National Medal of Science Award winner and one of the world's leading experts on schizophrenia is studying creativity and mental illness.  Her first book on the subject is The Creating Brain: The Neuroscience of Genius.  Her initial hypothesis was that writers generally would not have mental illnesses, but that some family member would.

Andreasen's research proved her hypothesis wrong, at least the part about the writers themselves.  80% of writers have a mental illness, mood disorders being the most common.  This is called a robust finding, which means way more than might occur by coincidence.  And it goes some distance to explain the blogosphere, dontcha think?!  The way she puts it, when the data proves your hypothesis wrong, then you know you are on to something.  In other words, your presupposed ideas have not distorted the interpretation of your data.  This disproved hypothesis put her on a track that led to unexpected, new findings.

Nancy Andreasen is a real scientist.

If scientists started out asking Why don't patients take our good advice? and discovered, Because sometimes patients make better decisions, then they would be on to something.  They might even find a new track that would lead to new findings.

Why Use Noncompliance Rates Instead Of Research Results As A Measure of Costs?

Once you put the pill in your mouth, you are no longer playing the odds.  You are getting results.  Other people have preceded you in this chemistry experiment, first in small numbers in the clinical trials, and then in large numbers in the real world.

The clinical trials yield some information.  What happens in the first 6-8 weeks?  How many people experience fewer symptoms of depression?  How many people go into remission?  How many people get what sort of side effects?  How many people quit before the end of the trial, because the side effects are unbearable?  How do all of these results measure up against placebo?

The clinical trials also take place under circumstances that influence the results.  Three lead to a difference between their results and the results that people in the real world experience.

First, the trial subjects (the word for people who put the chemicals inside their bodies) may be cherry-picked.  This means they are people most inclined to get good results.  Researchers try to recruit subjects who have not tried more than one antidepressant already.  Remember, half of those who are experiencing depression for the first time recover and never get it again.  People who do not recover quickly take more medications, and get worse results with each one.

In the STAR*D study, one of the selection criteria was that the subjects had not already tried any of the meds to be tested.  Those for whom the medication had already been shown ineffective were eliminated.  Which kind of stacked the deck, dontcha think?  Other scientists do.

Second, subjects receive extensive support throughout the trial.  Monitoring itself inevitably influences the results.  When depressed people get to talk about their symptoms, it reduces their isolation and eases the pain that is part of depression.  Even if those administering the medication are trained to be neutral, subjects get better, just because somebody cares enough to ask.

Third, and most significant for our purposes, is that trial subjects receive encouragement, intense encouragement, to endure side effects and finish the trial. 

Your Results May Vary

First, in the real world, even if two antidepressants do not work, consumers are urged to keep trying.  And each subsequent trial reduces the odds that the next one will be effective.

Second, in the real world, consumers are not so carefully monitored.  They are handed a prescription and sent out the door.  Subsequent appointments get briefer and briefer.

Third, in the real world, consumers are less willing to consume chemicals that make them feel worse.  We have jobs, families, lives to live, as best we can.  Nausea, dizziness, blurred vision, anxiety, insomnia... these things make living our lives difficult.

Noncompliance rates over the course of a year measure results the real world.  My guess is that is where you live.

So, how many people have weighed the costs and benefits they experience inside their own test tubes, results, not odds, and run screaming from the door?  Or more likely, tiptoe out to exercise not overt, but covert noncompliance.

What Are Those Noncompliance Numbers Again? 

10% of those prescribed antidepressants never show up at the pharmacy at all.

28% quit within the first month.

50% quit within 60 days.

72% are outta there at six months, 78% within the year.

There are problems with these numbers for our purposes.  All the different reasons for discontinuation are lumped together.  As well, different meds have different rates of discontinuation.  For example, again with the STAR*D study, 16.3% quit Celexa in the first 60 day trial, while 45.5% quit a Lithium/Zoloft combo in the third trial.

Somebody needs to be collecting this data.  Some consumer group, looking at real world data, not the guys seeking permission to sell pills. 

And Why Don't Consumers Consume?

Regarding those first 10%, we just don't know.  We can have some fun guessing.  Top ten list, that sort of thing.  But these guesses do not add to our knowledge.  This is missing data, and we will have to work around it. 

Another 44% say they quit because the medication wasn't effective.

Here we run into a problem.  It takes a while for most of these meds to work.  We don't know how many who quit in the first four weeks could tolerate the medication, but did not give it an adequate trial.

Both providers and consumers have an interest in figuring out this number.  From the provider perspective, these early quitters might respond to a better sales job.  For our purposes, the early quitters fail to give us the information we seek to figure our own odds.

Our algorithm will have to assume that further research will provide the numbers.  Once somebody funds that consumer group.

44% consumers who discontinue medication before their providers would like (the research calls it prematurely) say they did so because it made them sick.  According to the clinical trials, the most common reasons are nausea, headache, drowsiness, and increased anxiety.  These side effects are more common in the 6-8 week time frame.  Eventually, consumers cite weight gain and sexual side effects as the most significant side effects.

These are the types of numbers we will crunch to create our algorithm.  Sketchy as they are, they will be used for illustration purposes, not actual calculations.

But I need another recess -- something fun next week.

Flair from Facebook
Cartoon from Microsoft images
Counseling photo in public domain
Andreasen photo used by permission
Book cover from Amazon.com

PTSD and the DSM: Science and Politics -- Again

Several weeks of what I call "swiss cheese brain" interrupted my series on PTSD.  Now with a couple posts in reserve and a two week cushion, I am trying again.  To get us back on the same page, here is a (tweaked) reprint of March 28, a history of the issue in the Diagnostic Statistical Manual and current context, to be followed by PTSD: The State of Treatment, and then PTSD: Hope for Prevention.

With the ongoing war in Iraq, Post Traumatic Stress Disorder -- PTSD is much in the news nowadays.  We can expect that to continue.

Nancy Andreasen, author of The Broken Brain, traces the social history of this mental illness in a 2004 American Journal of Psychiatry article.  The features of what we call PTSD have long been noted in the annuls of warfare.  More recently, in World War I it was called shell shock, and those who had it were shot for cowardice in the face of the enemy.  In World War II it was recognized as a mental illness and called battle fatigue.  Afflicted soldiers were removed from the front and given counseling designed to return them to battle within the week -- though there is one infamous story about General Troglodyte Patton who, while touring a hospital, cursed and slapped one such soldier for his "cowardice."

The DSM I, from the post-WWII era, recognized battle fatigue as Gross Stress Disorder.  It was removed from the DSM II in the early 1960s , when U.S. society was not regularly confronted with this cost of war.

Popular Posts