Harmless Insanity

I’m going to write about work more. This is a good/weird space to process what’s happening and I want to have something to look back on to remember the good days (and also the bad ones). Today was such a good day. We had 3 clients when I expected to have none and one of them is a girl I’ve struggled with before. There was one hard moment where she was having a hard time and we handled it really well. B went for a bike ride with the other two and I hung out with her and we went for a walk to get her some cool nail decals and some potatoes for dinner. When we were leaving safeway this guy asked us for a dollar but I thought he asked for a button and she thought this was hilarious. I love having these small moments with kids where they’re having a really hard time and their life is in this crazy state of chaotic limbo and they can switch from being really upset to just laughing about something really silly. We ate a delicious dinner and played apples to apples and told cheesy jokes. Then I took this other kid with me to go rent a movie. He talked to me about what is stressful in his life and then started asking me some personal questions about what its like to be in your 20s and what friendships are like. I turned it back on him and he started telling me about how he doesn’t have a lot of friends and feels really socially awkward all the time, and it seemed like he was scared he won’t ever have friends. It was one of those weird moments where I wished that I didn’t have these professional boundaries and I could tell him how much like him I was as a teenager. That was me, and I was so scared that I would be isolated forever. Thinking about this now, I realize that this is one of those moments where having those shitty experiences helped me be more empathetic and able to connect with him, which is so cool. Then there’s this other new kid in the shelter who is SO SMART and he was talking to us about “transit justice” and how he’s working with the city to try to get free passes for all youth and made some joke about how capitalistic monopoly is. It was one of those days where I feel in awe of how amazing the youth I get to work with are, and feel like I’m good at doing my job. I wish every day could be like this.

This sounds like a weird question – everyone knows that psychosis is often very disabling, and antipsychotic drugs are widely recognized for their effects in reducing psychosis in at least most people, and most often taking effect in just a few days. And when people become psychotic again, it’s often understood that it’s because they “weren’t taking their meds.”

But what if it’s trickier than that? What if “antipsychotic” drugs make things better in the short term, but make long term problems worse? How would we even know?

In a recent letter to the Psychiatric Times, psychiatrist Sandy Steingard outlined some of the ways we can know that there definitely is a problem with the long term use of antipsychotics. (Note that while she addressed a limited number of studies, that’s just because there actually are very few studies which look at really long term outcomes.)

She started her letter by writing about the Northwick Park study, where people were randomized to receive either antipsychotics or placebo over a 2 year period. While members of the group on placebo was more likely to relapse into psychosis, they were also more likely to be employed.

And in case you are thinking that it might be worthwhile to have drugs interfere with employability if the tradeoff is reduced relapse, consider that the Wunderink study found that while those taking less drugs were more likely to relapse in the first two years, they were actually less likely to relapse in following years, such that there was no advantage to taking more drugs in forestalling relapse overall.

Then Sandy described a study done by Gleeson and colleagues which attempted to see if helping people “adhere” better to taking medications as prescribed would help people have better outcomes. In the first year, better adherence to drugs seemed to be helping reduce relapse, but after 30 months, overall relapse rates were similar in both groups, while those doing better at taking their drugs were less likely to be working, in other words, they were more disabled.

Finally, Sandy described what is possibly the most damming evidence of all. This evidence comes from a 20 year outcome study done by Harrow and colleagues. It’s a naturalistic study, which means it just follows what people did, so some have argued that the much superior outcomes for those that those who came off drugs during the study period were achieved because these were the people who had recovered, rather than being because the drugs themselves impaired recovery.

But one way to sort out which is which is to look at one came first, the recovery or quitting the drugs. To do this, we can compare those who stayed on drugs over the 20 year period, with those who got off drugs within 2 years and then stayed off them. Here’s Sandy’s summary on that:

At 2 years, 74% of individuals in group 1 [those who stayed on drugs over the whole period] had psychotic symptoms, as did 60% of those in group 3 [the group that quit drugs by 2 years and stayed off]. Although these differences are not statistically significant, the lines diverge at year 4.5 and continue to diverge over the next 15 years. At 4.5 years, 86% of group 1 have psychotic symptoms compared with 21% of group 3. By year 20, the difference is 68% compared with 8%.

68% with psychotic symptoms when staying on drugs compared with 8% psychotic symptoms for those who quit drugs (that are called “antipsychotic”) – that’s about exactly the opposite of what the public has been led to expect! But it’s precisely what we might expect if these drugs impair recovery from psychosis rather than promote it.

So where does that leave us?

Some psychiatrists who are aware of these studies, such as Torrey and Pierre, attempt to defend the drugs by maintaining that while some people can do well by getting off the drugs, others “clearly” benefit from continuing to take them long term.

My question is, how exactly can anyone, psychiatrist or not, know that a medication is “clearly” offering a long term benefit to a particular individual, when we can’t compare the person’s actual history with what would have happened to them had they gotten off the medications?

It seems to me that the closest we can do is to compare groups of people who get off or who are assisted in getting off medications, with people who stay on medications, and see who does better. As outlined above, this kind of evidence strongly suggests, even though it doesn’t absolutely prove, that staying on medications is likely unhelpful compared to getting off.

Of course it remains possible that medications are of benefit to some people in the long run, it’s just that this is not at all clear, and the appearance of clarity can be achieved only by ignoring the facts. This kind of ignoring is unfortunately all too common, perhaps because it is very disquieting for mental health professionals to consider the possibility that in most or possibly even in all cases, long term antipsychotic drug use is more damaging than helpful.

People often think it is “proven” that a particular individual needs to stay on antipsychotic drugs when that individual makes a number of attempts to get off and each attempt results in a relapse. But this in fact is not such proof. I know one person who reported about 20 such attempts before she got off successfully, and while that number is a bit high, many others also have stories of a string of failures before success. If we quit being sure this was impossible, we might put more energy into helping people succeed in getting off drugs and having a better chance at recovery.

The state of mind we call psychosis is often scary and even destructive, and it makes sense to believe that when nothing else seems to work, it may be helpful to reach for the kinds of drugs we call “antipsychotic, at least for awhile. But if we take the long term studies seriously, I think we will work hard wherever possible to find ways of helping that don’t involve using these drugs, and when they are used, we will then work hard to support people in attempting to come off them safely.

Such efforts may not always succeed, but I believe both disability and long term psychosis could be reduced dramatically if we also very dramatically reduce use of the so-called “antipsychotics.”

In other words, yes it is sometimes risky to avoid using “antipsychotics” or to come off once on them, and sometimes and in certain situations starting to use or staying on them may be better than not, but we have to balance the risks of not using them with the risks of using or continuing to use them, and we are starting to see that those risks can be extremely high. It’s not just the risk of “side” effects, things like weight gain and diabetes and permanent movement disorders and/or akathisia, but it’s also a likely increase in the very things the drugs were meant to reduce, the disability and the psychosis.

Discussion about this issue needs to happen throughout our mental health system, so that people can start to make informed choices. Writing this column is one way I’m trying to get the dialogue going: what steps will you take? I’d love to see your ideas in the comment section …

Ron Unger, Does Long-Term Use of “Antipsychotic” Drugs Result in More Disability, and More Psychosis?

[bold mine]

(via madness-narrative)


gettin’ real at dinner
Thank you all for your kind words about Graveyard Quest’s ending. We will see a physical release of it eventually, just not this year. Next year. Definitely by next TCAF at least.
Friday I announced that I’m starting up a new comic: an adaptation of the original Pinocchio story! It’s gonna be good. Starts up on Sept 15th, right after SPX, which I will be at with Topatoco.

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gettin’ real at dinner

Thank you all for your kind words about Graveyard Quest’s ending. We will see a physical release of it eventually, just not this year. Next year. Definitely by next TCAF at least.

Friday I announced that I’m starting up a new comic: an adaptation of the original Pinocchio story! It’s gonna be good. Starts up on Sept 15th, right after SPX, which I will be at with Topatoco.

And if Michael Brown was not angelic, I was practically demonic. I had my first drink when I was 11. I once brawled in the cafeteria after getting hit in the head with a steel trash can. In my junior year I failed five out of seven classes. By the time I graduated from high school, I had been arrested for assaulting a teacher and been kicked out of school (twice.) And yet no one who knew me thought I had the least bit of thug in me. That is because I also read a lot of books, loved my Commodore 64, and ghostwrote love notes for my friends. In other words, I was a human being. A large number of American teenagers live exactly like Michael Brown. Very few of them are shot in the head and left to bake on the pavement.

The “angelic” standard was not one created by the reporter. It was created by a society that cannot face itself, and thus must employ a dubious “morality” to hide its sins. It is reinforced by people who have embraced the notion of “twice as good” while avoiding the circumstances which gave that notion birth. Consider how easily living in a community “with rough patches” becomes part of a list of ostensible sins. Consider how easily “black-on-black crime” becomes not a marker of a shameful legacy of segregation but a moral failing.

— Ta-Nehisi Coates, being amazing. (via politicalprof)