Thursday, October 21, 2010

Is The Cure Worse Than the Illness?

This is the fourth in my series based on talking points raised by Robert Whitaker's eye-opening "Anatomy of an Epidemic."

It turns out Robert Whitaker and I were sitting in the same room, at the same symposium, at the same conference. The venue was the 2008 American Psychiatric Association annual meeting in Washington DC. The session was on "Antidepressants in Bipolar Disorder." Despite the fact that at the time I was writing mainly on my illness, this was only one of two bipolar sessions I recall attending in the five days I was at the conference.

Over the years, I had been expanding the range of my enquiry, which included a lot of research into brain science, as well as illnesses that backed onto and overlapped with bipolar, such as borderline personality disorder, schizophrenia, PTSD, and ADHD. Having experienced a demonstrable improvement in my mental health following a move to rural southern California about 18 months prior, I had also grown interested in the old fashioned "rest cure." So it was that on the first day of the conference, I found myself panning my video camera over a display of postcards of old asylums and spas.

The old institutions had been founded on enlightened principles. They didn't become chambers of horrors till some time later. Whitaker had written quite a bit about this in his 2002 book, "Mad in America." I was moving into Whitaker's world. He was moving into mine.

By two in the afternoon, I was ready to call it a day. My sleep was badly messed up, and this was no time to be a hero. Moreover, I was hardly about to be startled awake by anything new concerning an issue I had been reporting on for years. But the top bipolar experts in the field would be on the panel - two who had written glowing testimonials for my book - and I was not about to miss an opportunity to reconnect, brain dead or not.

Like me, Whitaker was at the conference for other reasons than to listen to bipolar experts. In particular, he was looking forward to a session in which Martin Harrow would talk about long term schizophrenia outcomes. In the meantime, there were two or three hours to kill. As he reports in Anatomy of an Epidemic: "I figured the speakers would simply present trial results that justified, in one way or another, the use of these drugs ..."

Instead, Whitaker found himself furiously scribbling away. I'm glad one of us had the presence of mind to take notes.

First speaker up was Frederick Goodwin, co-author of the definitive "Manic-Depressive Illness," which had come out as a second edition the year before. As Whitaker reports:

"The illness has been altered ... Today we have a lot more rapid cycling than we described in the first edition (which came out in 1990), a lot more mixed states than we described in the first edition, a lot more lithium resistance, and a lot more lithium treatment failure than there was in the first edition. The illness is not what Kraepelin described anymore, and the biggest factor, I think, is that most patients who have the illness get an antidepressant before they ever get exposed to a mood stabilizer."

As I recall, it was not simply a matter of antidepressants making bipolar worse. Dr Goodwin also made a strong case that for many people, clinical depression is bipolar waiting to happen. The rise in the incidence of bipolar, Goodwin noted, coincided with the introduction of SSRI antidepressants. It's not just the bipolar population that is at risk. A lot of those with so-called unipolar depression cycle in and out of depression without ever becoming manic or hypomanic - until you give them an antidepressant. Then they become bipolar.

Other speakers, including Nassir Ghaemi of Tufts and Robert Post, who spent most of his years at the NIMH, backed up Goodwin. Back to Whitaker's account:

Psychiatry, of course, had no "evidence base" for using antidepressants in bipolar disorder, but, Post said, the clinical trials conducted by pharmaceutical companies "are virtually useless for us as clinicians" ... Only a small amount of people, he added, actually "respond to these crummy treatments."

Goodwin further challenged recent pharma studies showing the high rate of relapse once bipolar patients were withdrawn from antipsychotics, noting that the findings were only evidence that "if you suddenly change a brain that has adapted to the drug, you are going to get relapse."

My interest in the whole matter was more than academic. Although it is clear that my bipolar manifested in college, it wasn't till I was 49 that I sought help. I was misdiagnosed with unipolar depression and prescribed an antidepressant which had me bouncing off the walls. Of all things, florid mania proved to be much safer than the suicidal depression I had been in. Ironically, bad psychiatry may have saved my life.

But that same psychiatrist also did something right, for which I am eternally grateful. The second time out, he put me on a low dose mood stabilizer. He didn't overmedicate me or turn me into a zombie. Soon, I was on my way to a new career in mental health journalism. I haven't looked back.

Most patients I have witnessed in more than six years of attending support groups haven't been so lucky. Their mood stabilizer doses were way higher than mine. Plus they were on other high dose meds. These were people in stable condition, but they never got better. Way too often, they got worse.

Whitaker noticed the same thing in the patients he interviewed for his book, but he came to a conclusion I would have never considered: It was the meds that were turning these people into the permanently disabled, he claimed, not the natural course of their illness. There was nothing natural to the course of their illness once the meds structurally altered their brains.

According to Whitaker, back in the old days researchers and clinicians noted that illnesses such as bipolar naturally remitted over a relatively short time. Now something different was going on, and we're not just talking about the side effects most of us know all too well.

As a group, we were more depressed, more manic, more psychotic, more anxious, more stupid, and less able to function than we were before. The medications have changed our brains. And the only answer clinicians have to our meds-induced worsening of symptoms is to respond with - drumroll - yet more meds, in yet higher doses.

How else do you respond to a person in distress? Take him off his meds? Alas, there is no easy answer.

This is a very bleak picture Whitaker paints, but one he is fully justified in painting. I was in the same room as Whitaker more than two years ago. He wasn't making things up. He wasn't taking the speakers out of context. If only we could write him off so easily. But the facts cannot be so easily ignored.

The facts - alas! - the facts.

Much more to come ...

Previous blog pieces:

The Whitaker Controversy: An Irony in Search of Nuance

If Meds Work as Well as Our Psychiatrists Tell Us, Why Do We Have MORE Mental Illness Today Rather Than Less?

RIP: Chemical Imbalance in the Brain


Porcelaine said...

do you think that this is the case for other mental illnesses? that medication can cause or worsen the state of a person's mental health with other mental illnesses?

John McManamy said...

Hey, Porcelaine. No and yes. For certain populations, meds are a Godsend. The catch is we don't know which populations. Clinical trials don't take bio-individuality into consideration (eg fast vs slow metabolizers, easy-going vs high-strung temperaments, etc, etc). So our docs wind up prescribing meds based on one size fits all when one size clearly doesn't fit all, which means very large percentages are inappropriately prescribed meds. No surprise, for these people, the meds are likely to worsen the course of their illness.

In his book, Whitaker claims that antipsychotics worsen the course of schizophrenia and bipolar, antidepressants turn depressives into bipolars and make bipolar worse, mood stabilizers make bipolar worse, stimulants for ADHD sedate kids and may be responsible for the sudden rise in child bipolar, and benzodiazepines make people feel agitated.

His claims are based on very convincing outcome studies, brain science, and real world observation. It can be argued that Whitaker goes too far, but we need to hear that in the form of a convincing rebuttal.

I'm looking forward to a spirited conversation here on the matter. In the meantime, if you are thinking of going off a med or meds, you need to do a slow taper. That's another point that comes in loud and clear from Whitaker. Suddenly withdrawing from a med doesn't give your brain time to readjust and all hell breaks loose. Again, slow taper.

Anonymous said...

Could economic and social factors determine how people are medicated? In other words do people with more insurance coverage have access to better doctors who are more systematic in medication management(don't put the patient on to many medications all at once)and perhaps fine tune the medication to a greater degree?

John McManamy said...

Hey, Mood Indigo. Yep. Same as for physical illness. The rich get the best docs and treatments. The poor have to make do. The poor often have to deal with an irregular rotation of docs, who keep messing with their cocktails, and for whom the 10-minute meds check is a fact of life. A lot of the poor simply slip through the cracks and don't get treated, then wind up on the streets or getting cycled through emergency rooms or the criminal justice system.

If they're lucky, perhaps those who aren't treated will naturally remit and wind up in better health than those who can afford treatment. But this is not likely to happen. Back in agrarian times, a psychotic break carried far fewer consequences. You can argue there was time and space to naturally remit. In modern times, a psychotic break will have neighbors calling 911. There is no forgiveness in our rigid society. No room to break down and leave healing to nature. Just one episode (be it depression or psychosis) is enough to take away the American Dream from us, to turn us from middle class people in relationships to jobless and friendless with no hope of getting our lives back on track. We don't have the luxury of being sick, over anything. We seek a quick fix which may turn out making things worse.

There are no easy answers. But we need to keep asking questions.

Cathy said...

I am absolutely, completley convinced my Bioplar I was triggered by an overdose of anti-depressants. Until I was hit with a phenomonally large dose at 28, (three times the norm) I had never been manic in my entire life. Depressed yes; a couple of times. Manic, most definitly not.

Also: my only other severe manic episodes, three in all, were linked directly with, you guessed it, use of an antidepressant. Or rather too much of one.

I have been in total remission from BPI for four and a half years ie no depression and no mania. At all. None.

In that time, I have been able to go back to a demanding professional career, I married and for all intents and purposes, I am ''normal''. Whatever that is.

I firmly believe Omega 3 fishoil (1500mg per day) wiped out my recurrent depression completely and tegretol (carbamazapine) is my miracle mood stabiliser of choice. It should be used more often because it does not cause weight gain and it works. I believe better than lithium, which I have never tried due to its scary side effects.

Trouble is, most doctors don't even think of prescribing it any more. (It is off patent thus for US patients, cheap)

I also firmly believe that antipsychotics for people with BP are wrong, wrong, wrong.

Bipolar I - specifically a psychotic episode of it - is triggered entirely by lack of sleep.
Or in my experience it is. Sure, emotional things/pressure might set you off but it is the aggregate lack of sleep that actually tips you into mania that needs hospitalisation.

Nip the lack of sleep in the bud and you beat the illness.

ie I had one period of about three days in the last four and a half years (about 18 months ago) where I had decreased sleep, racing thoughts and increased positivety/creativity. I had been under intense emotional pressure for some time.
But in other words, I knew the signs were not good.

I upped my dose of tegretol immediately by 100mg, and added two benzos to force me to fall asleep.

I slept seven hours the first night, nine the second and 11 the third. By day four, I was back to normal. Completely.

I carried on with the extra tegretol for a week afterwards, just to make sure; then gradually weaned myself off it and got back to my usual dose. (800mg per day, for those who are interested)

I was fine. Illness back in remeission.

It is my firm belief that if you can jump on the sleep thing and get it back in control, you control the illness.

BP psychosis, just like psychosis for people without the condition, is caused by lack of sleep.

The difference for us is that it takes a lot less time ie days rather than weeks to trigger psychosis/major mania from lack of sleep.

If we could get researchers to look at this more closely we may never have to touch an antipsychotic (with all its horrendous health consequences) again.

I have been free of these vile drugs for nearly five years now, touch wood.

Researchers need to look at this with BP. (The drug companies would hate it though)

But surely there are some researchers out there brave enough to try?

John McManamy said...

Hey, Cathy. Congratulations on your wellness! Excellent advice. Please keep posting. :)