I sit, hands wringing, heart pounding, cross legged in front of my computer in my 2nd floor apartment living room. I hear the refrigerator buzzing loudly, and I feel more than a little bit detached from my body. Such is the result of my decision to finally reduce the dosage of my antipsychotic medication. If it goes well, I may come off of it completely, but who knows? It all depends on how I fare over the course of this next year or two. Year, or TWO? Yes, I am sensitive and aware enough about my own body (and about neuroscience) to know that a typical 3 week weaning process would have me back on the psych ward faster than it would take for any doctor to say “I told you so.” No, I’m too smart for that. And too cautious. If even with this snail’s paced titration, I stop functioning at the level I’d like to professionally and personally maintain, I can always run crying back into the arms of Big Pharma, and hopefully resume my life as the only kind of mental health advocate I can professionally be on a public scale: one who swallows pills and gets others to do the same.
This will be a complicated transition, to be sure. Even with a recent reduction of less than 10% of the D2 dopamine blocker I have swallowed willingly for more than 2 years (following the adherence to a different one for 5), I am experiencing transient hot flashes, depersonalization, a hypersensitivity to light and sound, poor concentration and some intermittent difficulty coming up with words. BUT, instead of the hasty conclusion I always came to when I tried to reduce my meds in the past (that I’m sinking into psychosis again, that I can’t live without pills) I contemplate the idea that maybe my brain is just reacting to a massive neurochemical adjustment, and so I have decided to endeavor to explore this further.
I am by no means a neuroscientist, or a psycho-pharmacologist, but I am lucky enough to include a few of them among my peers. And, I have been studying this stuff myself since 2004 when I began to transition into my first and only psychosis and needed to know what to do. And as everybody knows, hypochondriacs have great memories and abilities to synthesize medical information. Just kidding. Actually, in one sense, the more frightened you are, the more easily you will jump to the most catastrophic conclusions possible, without giving much credence to the notion that your experience might not be so severe or chronic. I did this. I jumped to the most dire conclusions and the worst case scenarios I could find. Yes, the same terror that fed my psychotic processes were also luring me into the belief that my life was over and I would never recover. One can understand why I thought like this, right? I was young, and increasingly less in touch with consensus reality . But sadly, it is the very establishment that is meant to help people like me, that fed this obsession with my own imminent annihilation. It didn’t take more than a one word google search to come across headlines like “youth’s greatest disabler” and “chronic, degenerative brain disease.” It was so-called reputable articles like these that sent me straight to a psychiatrist, pleading to obtain the magic pills that would somehow at least minimize this horrible disintegration process.
7 years later, I have begun to think differently. There are a few things I know now that I was too fearful to absorb back in 2005.
One: evidence does not show psychosis to be biologically degenerative. The same studies that tried to prove that anti-psychotics prevented brain shrinkage have actually contributed to the data that they in fact can cause it. Not to be a fear-mongerer or anything. Brains adapt. It’s probably minimal in any case. Nonetheless, it is of note.
Two: Several American RCTs of patients being given antipsychotics or no meds at all showed that the antipsychotic group got better faster. No surprise there. But here’s the kicker: patients given no meds recovered more slowly, but they had less incidence of relapse and far better long-term outcomes than those given meds.
Three: a Finnish psychosis clinic has now achieved the best recovery rates from psychosis in the western world. It’s clinicians use caring, supportive, nurturing psychotherapy and work with the content and experience of their patients’ psychotic “symptoms”, almost always without meds. Their success rate is 85%, and the incidence of chronic psychotic disorders has decreased by 90% in the region they serve.
Four: According to a number of studies at McGill and elsewhere, dopamine hypersensitivity and an increased density in dopamine receptors is shown to develop in people who stay on anti-psychotic medication over time, hence increasing the susceptibility to relapse of psychotic symptoms once stopped. Hence the evidence accrued in point number two.
Five: In countries where anti-psychotic medications are far less available, recovery rates from psychosis are notably higher. See points two and five.
Do I really have to continue?
Well, I suppose I am still somewhat torn. Psychosis is scary. And now that I’m probably hypersensitive to dopamine, my chances of relapse may be high (hence the decision to drop my dose incredibly slowly, in the hopes that my brain will adapt and prune away some of those extra dopamine receptors). Also, I had experienced a lot of cognitive decline 7 years ago. And a lot of negative symptoms. I was so flat emotionally, that I could barely function. And, this drug has served me well. But just because these last few years have been good to me, doesn’t mean that I owe it all to Big Pharma. I worked hard. I certainly don’t want to experience such terror again, but then again, I think it’s time to stop letting my fear of fear itself turn me into a complacent (but certainly compliant) doormat. I can risk a little. I can figure this out, one milligram at a time.
I should add that by no means do I recommend everyone to avoid psych meds in all situations. If someone’s beliefs put them at risk of harming themselves or others, or if they are suffering immensely and want quick relief, they should be allowed it. And certainly, there is a massive shortage of safe, nurturing places people can go to ride out and ultimately resolve a psychosis. So, with regard to our current system, how could we not use them? We simply do not have the resources allocated to the right places to actually provide ideal care. So, of course, the conundrum of how to effectively treat psychosis in the long term remains. But I have begun to wonder about the road less travelled – the path toward learning and psychological growth and discernment and agency. I don’t want my old self back; that’s just silly. But I do want to dive head first into what life has to teach me, to challenge and transform my tendency toward paranoia and dissociation and confusion. I want to ride the waves that once knocked me over because I was too afraid to move. I want to stop hiding. I want to give this a try. Thoughts?