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. []

A Shift in Expectation of Self

I really like this post on body policing, and in particular, how people seem to feel qualified to tell someone with a chronic illness that if they just did X – largely either adopt some quack routine or exercise – that all their problems would go away. In particular, I really liked this:

You’d never run a marathon with pneumonia, but a man with CFS needs to, because expending all that additional energy will make his problems go away?

You hear someone say that their life is awful. You hear them say that they’re in pain. You hear them talk about the medications, the doctor’s appointments, the flare-ups, the feeling of never being able to escape. You hear these things and you say “laziness”, but it never occurs to you that your own illnesses- a cold, the flu- make everyday tasks difficult- difficult enough that, quite often, you will complain about being sick and sometimes even skip out on obligations so you can rest up.

You hate being sick.

Admittedly, this was already on my mind, as this morning the fiancé1 and I were talking about some general goals and ideas of accountability, and he asked me to talk a bit more about how exercise can be a challenge with my chronic pain.2 For the first time, I really had to think about the activity level that I held myself to as “the standard:” I was at one point doing yoga and pilates twice a week each; going to the gym three times a week; hiking and walking all over the University of Washington campus; and going dancing several times a week.

I’ve failed to meet anything even nearing that level of activity since I left Seattle, though, and it’s been discouraging for a number of reasons. Exercising hurts, aggravating my chronic pain. I know I need to do this, but I don’t like being in pain, so it’s a disincentive. The fiancé listened to me complain a bit, and then asked a question that led to a lot of coins dropping all at once: he asked if, after a period of time, I’d “break through” and reach a point where exercising didn’t hurt, like most folks do when they’re just getting in to shape.

And I realized that I? Do not know. Today is really the first time I put together the other half of that equation: I was able to be that active while at UW because I was on a cocktail of medication that managed and controlled my pain. While dosing and makeup varied and was continually being adjusted, during most of this period of time, I was taking: 120mg XL morphine a day; 8-10 vicodin as needed for breakthrough pain; anti-nausea medication; two different anti-depressants to help boost the effectiveness of the painkillers; and a rotating schedule of sleeping pills. Not infrequently, this would all be topped off with an anti-anxiety medication (useful for tests and doctor appointments, which were almost always full of pain). So yes, no wonder it didn’t hurt to exercise – I had done a very good job at stripping away the pain.

It’s a bit weird and a bit of a relief to see that I’m actually not a failure or weak for not being able to live up to that standard of the past; I’ve managed to largely stop taking all medications for my pain (with exception of the occasional vicodin or high dose of Advil), but this also means I need to re-evaluate what I can and cannot do, and stop holding myself to a standard that I was only able to meet due to prescribed medications.

It is a strange shift in belief and concept of self, if nothing else.

  1. Oh yeah – hey, I got engaged! I guess that didn’t make it on to the blog, although it hit Twitter and I assume most of you read this from there. []
  2. Sappiness alert! One of the many reasons I love him: he has taken the time to ask and learn about limitations and range and how life can be impacted by living with a chronic illness, and I’ve never once felt like this was anything other than an effort to get more knowledge so that he can do his best to support and encourage me. []

Tuna Tuesday: Times You Don’t Want to Wash a Cat

“Hey, Kelly? Weren’t you supposed to start writing about a week ago, give or take?”

“Why yes, Anonymous Internet Voice, I was!”

“Well, you didn’t. Why not?”

“It’s a bit of a story, Anonymous Internet Voice, but pull up a virtual chair and I’ll tell you all about it…”

Okay, cutesy conceit dropped, but the point remains. I was supposed to write. I didn’t write. What the hell happened to writing? Well, a record heatwave for this early in the season turned me into a puddle of Not Doing. I don’t have central air in my apartment, and only my bedroom has A/C. (In this photo, Toledo is helpfully illustrating that it’s so hot all his bones melted.)

In fact, it was so hot that, when I wasn’t trying to keep myself cool, I was trying to cool down the cats.
However, I discovered that a wet clothe on the back, much like a leash, leaves kitties forgetting how to walk. So Zeus went for the Supercat look, instead. Very chic.

When the heat finally abated, I found myself suffering the usual side effects someone with a chronic nerve pain condition finds themself in after a 45 degree temperature shift in less than two days: pain. That pain manifested itself Sunday in a migraine, and I spent much of Sunday night throwing up. Because bathrooms are always, always cool refuges of icy tile – and why is that? The rest of your apartment can be an oven, but laying on that bathroom tile is like large paving stones of ice. But I digress. I was in the bathroom retching, and Zeus was in the bathroom with me. Zeus was very concerned – and oh, how sweet, I thought.

Silly me.

Zeus was concerned, yes. He was apparently concerned that I was hiding food or something from him, because during one of the moments I wasn’t holding on to the toilet for dear life, he stuck his head into the toilet to see what was going on. Now this, in itself, may have been fine – if I had been done vomiting.

I, however, was not.

And that’s how I found myself, late Sunday night, washing a cat while every tilt of the head or shift of the shoulder made waves of nausea roll through me. This was not on my list of things I wanted to do…ever.

Aside from mildly wounded dignity and irritation at a fierce ear-cleaning Monday morning, Zeus is fine. I got a healthy amount of sleep the last two nights, and am largely feeling better. Does that mean I’ll be better about posting? Probably not for another week – we’re heading into a heat wave that makes last week look like winter, and my poor, going to die in the heatwave, father, is coming to visit at the end of this week. The savvy reader might well point out that we’re rolling in to summer, when the heat is going to get worse and more frequent, to which I can only say point to you, and hopefully habit eventually wins out.

Trust/Time/Pain Relation

It occurs to me that chronic pain/suffering is the opposite of trust. In fact, it is in many ways the ultimate in broken trust – a broken trust in your body. We have this implicit notion of what the body can be like, and should do. How it should perform, respond, and behave at any given time. We trust that when we want our body to reach for the wine glass, the right hand will raise and do so , that it will not spasm and drop the glass, that it will not be wracked with pain.

Time loops back into the equation because trust and time are intimately bound. One cannot exist without the other. Time itself is a construct; nothing exists but now, the present. We are always in the present, passing through it. We never reach the future, and the past is always behind us.

Trust is based on experience. Experiences that we have moved through in our present as it becomes past, and experiences that we have witnessed others move through.

These events, these singular experiences,
allow us to look at the seemingly endless options in front of us and narrow them down; trust becomes a filter that allows us to make decisions. In the network of life, trust gives us a way of managing what would be incomprehensible.

When emotional trust is broken,

our options become limitless, and we are paralyzed, not in fear, but in choice. We have no way of narrowing down the potentiality of an event/situation without the ability to trust. But we trust – or not – based on prior events, and to override those prior events that taught us that we cannot believe our instincts is something that can only be done on faith.

Chronic pain/suffering is a different betrayal of trust, though. It’s not emotional, and the result is that it doesn’t result in endless options that we can’t filter, being able to say X would be bad, Y would be good, etc. Instead, the opposite happens. Instead of there being a limitless set of options in front of us that we are unable to sift through and properly respond to, our options shrink to few, or none. We learn that we cannot trust our body, that any instruction could result in pain, in broken items, in exhaustion, in – well, the realm of experiences of chronic pain/suffering. But because I can grab a mug one day and have no problems, and grab it another day and would have dropped it if not for the handle catching on my hand, I cannot even have the most basic trust in my body’s abilities. This limits my options, I can’t do anything.

Go to the movies? Maybe, maybe not. might be fine, but it might be so uncomfortable that I am in screaming pain before an hour is out. Go ice skating? Only if I want to risk injury and pain migration. The list goes on and on, until even getting out of bed becomes a chore, a threat. (Depression in sufferers of chronic pain/suffering is, I maintain, a direct result of this, rather than any other factor.)

And regardless, without the ability to trust, whether external or internal forces, the result is that we are everpresent in the now, unable to pass through the present. We become stuck.

…it’s very odd to quote/crib my own writing. If this looks familiar to some of you, well, there’s a reason for that. I suppose I am building a theory! (And at the very least, I am recording a snippet of a longer email conversation for posterity, and further thought.)