Long-term Antipsychotics May Be a Medical Mistake

I’ve debated whether or not to post this since seeing Robert Whitaker’s lecture slides and heard about the results of his talk to NAMI from friends who were there, but ultimately decided that since this is an actual personal issue for many people, due to your own health or those of people you love, it’s worth making sure the information is available as far and wide as possible. Consent to medication needs to be informed, blah blah bioethics stuff.

Before the TLDR, the gist is this: evidence suggests that the best treatment for schizophrenia is not continual medication, and that

a significant percentage of those with schizophrenia who did not receive antipsychotics or took them for a very limited time had better long- term outcomes than those who took them on an ongoing basis.

And perhaps even more importantly, there’s significant evidence that the long-term use of antipsychotics creates a vulnerability to future psychotic episodes.

It’s important to note that Whitaker isn’t saying antipsychotics shouldn’t be taken, or aren’t needed by all people who are on them. But he’s gone over something like 60 years of data, a lot of which is from longitudinal studies spanning 20-30 years, and it looks like fully 50 – 75% of patients could make a complete functional recovery sans long-term antipsychotic use:

Medication compliant patients throughout 20 years: 17% had one period of recovery.

Those off antipsychotics by year two who then remained off throughout next 18 years: 87% had two or more sustained periods of recovery.

The data was so compelling by 1992 that Finland switched to a selective-use of antipsychotics that year… and now has the best long-term outcomes of anywhere in the world. Fully 79% of people – not just schizophrenics, but anyone who might be given a neuroleptic for psychiatric issues – are asymptomatic at five years, with 80% either in school or the workforce.

A lot of the issue appears to be what is known as “oppositional tolerance.” Anyone with chronic pain recognizes the concept if not the phrase: it’s what requires a gradual dose increase in medication to continually receive the same pain management. Essentially, the brain compensates for blocked dopamine or serotonin receptors in two ways. In the case of dopamine, postsynaptic neurons increase their receptors for dopamine as presynaptic neurons increase their firing rate. The opposite happens for serotonin: as the presynaptic neurons decrease their firing rate, the postsynaptic neurons decrease the density of receptors. In each case, the brain is trying to compensate for the effects of the drug being released into the system. Depending on the kind of drug being taken, we change the structure of the brain making it even more (or less) sensitive.

And, in fact, it’s the very recognition of concept that makes me wonder if Whitaker’s results can be extrapolated beyond neuroleptic use for management of mental health related illnesses and into chronic pain management; perhaps it’s better to treat acute instances of pain (“flares”) and then gradually decrease dosing until the patient is off medication than to continually dose the body with drugs “just in case.”1

Anyhow, the very accessible and easy-to-read slides for Whitaker’s NAMI presentation can be found at this link, which includes detailed citations for those who’d like to read the journal literature. There’s also a good mother-of-patient perspective from Kathy Brandt at Mad In America. And if you really feel like having a sad today, you can read Carl Elliott’s comprehensive coverage of the death of Dan Markingson in the Seroquel studies, which should be required reading for anyone contemplating participation of themselves or a loved one in a drug study, or exposure to contemporary antipsychotics.

  1. Of course, I also have some admitted bias towards this idea, because it matches my experiences. We could easily call this revisionist history attempting to establish narrative control, too. []

The Invisible Made Visible

While I have never been terribly quiet in discussing my disability, I also acknowledge that I am, for a disabled person, in a privileged class. I can “pass” as normal – that is, I don’t look outwardly disabled. There are a host of issues that come with this, including a lack of “validity” from both normals and disabled folks. (I don’t look “sick”, so how can I be “sick”? Comes from both sides of the aisle.) But, problems aside, I fully acknowledge that it is nice to go out in public and not have the public gaze focused on me. Been there, done that, definitely didn’t like it.

Which is what makes this so strange
The invisible made visible. on Twitpic

I haven’t been visibly identified as disabled in a long time. When I fly, for various reasons, I normally fly United, and I pay for the upgrade that allows me extra leg room and space. This comfortably addresses my issues, and there’s nothing else I really need to do, other than make sure I select smart seating when I am booking my flight.

For various reasons, I am flying Southwest today. I haven’t flown Southwest since I was a child, so I had no idea what to “do”. I tried to contact Southwest air via their Twitter account, and they promptly ignored me. Their customer service agents, over the phone, told me there was nothing they could do – just try to sign in early enough to get priority boarding. Sigh. So I read over the information on the website, and they said to contact customer service at the airport – so I did. I explained that I am disabled and that I do need advanced boarding and he asked for a doctor’s note.

Oh, from the doctor I haven’t had since August. Sure, I’ll get right on that thing that wasn’t mentioned on the website.

I volunteered to show Adam, the customer service rep, the pain patches covering my right arm. He laughed, said that wouldn’t be necessary, and explained my boarding process, handing over the above blue tag.

Now I am sitting here, and irrationally, I feel branded. Like everyone is staring at me – which of course isn’t true, unless you count the adorable moppet who appears to find me the most fascinating thing ever. Still, next to me is this bright blue boarding pass, clearly printed PREBOARD – and why.

Is the person across from me looking over his newspaper to look at me? Figure out what is wrong with me? Wonder why I have armwarmers on, which cover most of the pain patches and hide them from visibility? (Practically speaking, they keep them on, but is that what it looks like?)

Is the woman with the three young children trying to figure out why I get to board ahead of her?

Is that a scowl from the very well-dressed man the fact I might get the seat he wants?

Maybe more importantly, why do I care? Why does it feel so exposed and vulnerable to have people know I get to board a whopping few minutes ahead of them? These are people I don’t know and will never know; we will be spending at most three hours together on a packed flight.

And yet, and yet. I sit here and wonder: should I exaggerate my limp? Avoid full mobile range of my right arm, to emphasize that I am indeed broken, and not just gaming the system? Should I put on airs and affected manners just to verify I am legit, really and honestly? And ultimately, if the gate agents don’t care, why should I?